National Lymphoedema Strategy Programme. End of Year Report 2012/13 and Work Programme for 2013/14. Fiona Jenkins /Jane Fitzpatrick / Melanie Thomas

Transcription

1 National Lymphoedema Strategy Programme End of Year Report 2012/13 and Work Programme for 2013/14 Sponsoring division: Contact: Who will present: Public Health and Health Professions Christopher Dawson Fiona Jenkins /Jane Fitzpatrick / 1. Purpose The purpose of this summary report is to- Inform CEO / EDT members of progress made by the National Lymphoedema Strategy Programme during 2012/13 Seek endorsement of the proposed work programme for the National Lymphoedema Strategy Programme during 2013/14 2. Recommendations It is recommended the work programme for 2013/14 be endorsed 3. Introduction and Background Lymphoedema is a chronic swelling due to lymphatic system failure. It can occur from a congenitally determined lymphatic abnormality or from lymphatic damage by inflammation, infection, trauma, tumour, surgery or radiation. It is chronic and incurable and requires lifelong management. Lymphoedema can affect people of all ages and can occur in any part of the body. It may not occur for sometime after the initial trauma or surgery and patients remain at risk of developing Lymphoedema for the remainder of their lives. Lymphoedema affects individuals physically, psychologically and socially. It has a significant impact on quality of life and the ability to undertake normal activities of daily living. Reported issues include:- Massively swollen limbs that leak Poor functional ability Decreased mobility Unable to wear normal shoes and limited on choice of clothes Stigmatised Increased pain levels Unable to work Frequent admissions into hospital with cellulitis Scared, anxious and depressed Unable to cope and lost control Based on the prevalence of Lymphoedema found in the 2003 South West London study of 1.33 per 1, 000 there would be an estimate of 4000 Lymphoedema sufferers in Wales. However, reviewing the current statistics we have a caseload of 7,000 patients with an incidence of 2.5 per 1000 population. Until January 2012, there were wide variation in the organisation and delivery of Lymphoedema services across Wales due to limited funding available and was not a result of patient need. Unfortunately as was discussed in the Welsh Government Lymphoedema Strategy 2009, most people with Lymphoedema went undiagnosed and untreated for long periods of time. Date: Jane Fitzpatrick / Version Final 1

2 The main aims of the 2009 Welsh Government Lymphoedema Strategy were; Raise the awareness of Lymphoedema and how simple treatment strategies could improve patient s quality of life Improve health and well being by empowering patients to maximise their own independence and minimise the risks associated with Lymphoedema Integrate, develop, reconfigure and more effectively plan and manage Lymphoedema services throughout Wales in line with the seven Health Boards and Velindre NHS Trust Improve patient access to Lymphoedema services ensuring that patients receive the right treatment at the right time by the right professional in the right place Provide a comprehensive preventative approach to all patients at risk of developing Lymphoedema thereby reducing the demand on other NHS services Build on the strengths of the current tertiary and secondary care Lymphoedema services integrating services across organizational boundaries incorporating community, primary care and social services Develop and build on the current available Lymphoedema education enabling health care professionals to easily access local courses to implement in their own practice Clarify the actions needed to implement Lymphoedema services across Wales and improve service delivery 3.1 In April 2011, Welsh Government (WG) made available 1 million pounds on a recurring basis to implement the Lymphoedema Strategy and NHS Wales Chief Executives and WG agreed the distribution of these funds across NHS Wales and the principles regarding the allocation of monies. In addition :- Jan Williams, Chief Executive of Cardiff & Vale University Local Health Board (ULHB) was appointed as the lead Chief Executive across Wales and was asked to champion Lymphoedema services. Following the retirement of Jan Williams in April 2012, Fiona Jenkins, Director of Therapies and Health Sciences, Cardiff and Vale ULHB has assumed this role on behalf of the NHS Chief Executives., Lead Macmillan Clinical Lymphoedema Specialist in ABM ULHB, was appointed as National Lymphoedema Clinical Lead to direct the implementation of the Strategy. Jane Fitzpatrick, Director, Programme Management Unit / Strategic Programmes has been the Lymphoedema Programme Director, supporting the implementation of the Lymphoedema Strategy since September Claire Thomas, Programme Manager, Strategic Programmes has been the Lymphoedema Programme Manager since October See Annex 1 for Terms of reference of the Lymphoedema Network Group Date: Jane Fitzpatrick / Version Final 2

3 4. Progress achieved Significant progress has been achieved throughout in the establishment and formation of Lymphoedema Services across NHS Wales and Annex 2 provides detailed information on the achievements based on the work programme and Annex 3 is the key actions required from the Welsh Government Lymphoedema strategy In summary: 4.1 All NHS Wales Lymphoedema Health Board Services are developed and been operational for over 18 months. Patient quality of life has shown to be improved with an All Wales Lymphoedema Survey. Additional costs have also reduced in associated health care expenditure including reducing hospital admissions for cellulitis and reducing community nurse appointments through the inception of Chronic Leg Clinics in all the Lymphoedema services. This one-stop clinic reduces the need for patients to be waiting for other appointments as all specialities ( Lymphoedema, dermatology, tissue viability and podiatry) see the patients in one visit reducing travelling times. It is recognised that neglecting chronic oedema/ Lymphoedema ultimately results in a massive drain on NHS resources. 4.2 The Lymphoedema Strategy recommended that all services integrate, develop and reconfigure including the South east cancer patients with lymphoedema should be seen within their own local Health Board Lymphoedema Service thereby reducing the need to travel to the Velindre NHS Trust Lymphoedema Service. Repatriation of current Velindre Lymphoedema staff and resources will take place in October This will then ensure that all lymphoedema patients will be seen by specialist based lymphoedema services within their health board. 4.3 Improving patient access and integrating services across organizational boundaries incorporating community access has seen the collaboration between All Wales Lymphoedema services and the Voluntary sector Tenovus Cancer Charity. This collaboration in utilising the Tenovus Chemotherapy Mobile Unit across South Wales has reduced the need for patients to travel across the breadth of their health Board to access care and treatment. In ABMUHB for example all Bridgend residents now access the mobile unit in MacArthur Glenn shopping village reducing the need to travel to singleton. Similarly, Powys, Cardiff and Vale, Hywel Dda and Aneurin Bevan all access the unit on a monthly basis. An independent evaluation with patients and staff was so positively received that a dedicated Lymphoedema Mobile Unit will be launched in the Senedd on October 8 th This will allow the services to have weekly access instead of monthly clinics in so doing improving patient capacity and flow. 4.4 The Lymphoedema Network and Lymphoedema Clinical Network have representation from all the Health Boards and Velindre NHS Trust ensuring that All Wales protocols, policies, care pathways and standards of Lymphoedema are being met. This enables patients to receive standardised appropriate treatment bringing an end to current inequity of service provision. All Wales Lymphoedema patient information leaflets have been written and are in the process of being published under the Public Health umbrella. See Annex 4 System level Indicators for Lymphoedema Service Provision. 4.5 Prevention of lymphoedema is vitally important, thus all Lymphoedema Health Board Services in Wales now have a robust programme of care delivered to all patients undergoing axillary intervention following a breast cancer diagnosis. Breast cancer patients receive evidenced based information to decrease their risks of developing lymphoedema and advice on cancer rehabilitation and general good health. 4.6 In November 2012, the National Research and Educational Lymphoedema Specialist post was appointed and is job shared by Cheryl Pike and Karen Morgan. Their work plan is developing and a 6-month report is available at Date: Jane Fitzpatrick / Version Final 3

4 4.7 Two new research projects have been developed, one has been commissioned reviewing the impact of developing lymphoedema services from a patients perspective and a second study researching the health economic overview of developing lymphoedema services will be out to tender shortly. 4.8 Accredited Lymphoedema education has progressed significantly this year with 12 units now approved ranging from patient awareness to assistant and specialist level specific skilled units. 41 members of staff have received certificates and a further 60 course units are awaiting accreditation. Cheryl Pike has completed part one of Lymphoedema teacher course to assist qualified lymphoedema teacher in delivering specialist level courses. Developing and delivering courses within Wales enables all staff to develop accreditation locally. Education Pop-ups have been created for use within each of the health Boards to raise awareness for staff and patients. An audit of their effectiveness will be completed in Further developments within the Lymphoedema Services Procurement Group (LSPG) have occurred with presentations to the All Wales Medicines Management Group in reducing waste, harm and variation within prescribing compression garments through community pharmacy budgets. A collaborative project with Community Pharmacy Wales will include an audit to improve the prescribing process and reduce unnecessary waste and delays in patients accessing their garments. The audit will commence in November The Lymphoedema Services Procurement Group is also working collaboratively with SMTL in the delivery of an All Wales Lymphoedema contract and an All Wales Lymphoedema Formulary for primary and secondary care. The contract is aiming to start September 2014 and the National Formulary available in October Work is underway in assessing the need for dedicated paediatric lymphoedema services within Wales. Initial evaluation has revealed that families of children with lymphoedema have experienced long waits for care and assessment leading to huge anxiety and stress. Paediatric patients are also expected to travel to numerous hospitals outside Wales. An audit of referrals has revealed over 30 cases of childhood lymphoedema in Wales. Further awareness is planned for Lymphoedema services and personnel have won numerous accolades during the Tenovus / Lymphoedema development won an excellence award at the Third Sector Excellence Awards in September 2012; was awarded an outstanding achievement Fellowship at the Macmillan Cancer Support awards as well as Service Improvement award. Two Welsh Lymphoedema Specialists won the best novice poster and oral presentation at the British Lymphology Society conference October In June 2013 Melanie was honoured with a MBE for her services to lymphoedema patients in Wales The first Lymphoedema Newsletter has also been published with 2 versions one for patients and one for Health Care Professionals and management. Annex Throughout , the Programme Team have been working with the Deputy Director of Finance, Cardiff & Vale ULHB to ensure that robust financial management arrangements are implemented for the allocation of monies for Lymphoedema Services. To further strengthen the existing arrangements and support the Clinical lead, work will be undertaken with Public Health Wales and Cardiff & Vale Finance and Procurement departments during All Wales Lymphoedema Activity and Staffing The Lymphoedema Service has been capturing standardised information on an All Wales basis since January The following table highlights the data collected from within each of the health Boards and Velindre NHS Trust during the last year April 2012-March The total numbers of new referrals into the services is just over 3500 patients. The activity is slowly increasing but is manageable within the services. Date: Jane Fitzpatrick / Version Final 4

5 Number of New Lymphoedema Referrals received (1st April st March 2013) What is apparent however is the complexity of cases is higher in the newer services due to the delay in lymphoedema servicee provision. Each service should have a maximum of 220 patients per therapist this is under and over in services based on their infancy. The newer services have less capacity but more complexity compared to older services which have a higher capacity but lesser complexity. Total Number of Patients on caseload (1st April st March 2013) Date: Jane Fitzpatrick / Version Final 5

6 Each of the lymphoedema services have achieved the current target of seeing patients within the 26-week from referral. The target for required patients to be seen within 22 weeks of referral. However the lymphoedema services since April 1 st 2013 have been working and achieving a targett of 18 weeks from referral. Thus no new lymphoedema patients will be waiting longer than 18 weeks to be seen. During 2012/ ,119 patient contacts were undertaken by the All Wales Lymphoedema Service, which represented both Cancer and Non-Cancer activity. Lymphoedema All Wales Activity (Cancer & Non Cancer) 1st April st March Cancer Non Cancer TOTAL ACTIVITY Date: Jane Fitzpatrick / Version Final 6

7 Lymphoedema All Wales Activity 1st April st March 2013 All Wales Lymphoedema Activity Cancer Aneurin Bevan UHB Abertawe Bro Morgannwg UHB Betsi Cardiff & Cadwaladr Vale UHB UHB Cwm Taff HB Hywel Dda HB Powys HB Velindre Trust TOTALS New Patient Follow up In Patient Intensive Rx Home Visit Prevention Unable to Attend Did Not Attend TOTALS (excluding UTA/DNA) All Wales Lymphoedema Activity Non Cancer Aneurin Bevan UHB Abertawe Bro Morgannwg UHB Betsi Cardiff & Cadwaladr Vale UHB UHB Cwm Taff HB Hywel Dda HB Powys HB Velindre Trust TOTALS New Patient Follow up In Patient Intensive Rx Home Visit Prevention Unable to Attend Did Not Attend TOTALS (excluding UTA/DNA) Aneurin Bevan UHB Abertawe Bro Morgannwg UHB Betsi Cardiff & Cadwaladr Vale UHB UHB Cwm Taff HB Hywel Dda HB Powys HB Velindre Trust TOTALS All Wales Total Lymphoedema Activity Cancer All Wales Total Lymphoedema Activity Non Cancer TOTAL ACTIVITY Aneurin Abertawe Bro Bevan UHB Morgannwg * 4 months data UHB Betsi Cardiff & Cadwaladr Vale UHB UHB Cwm Taff HB Hywel Dda HB Powys HB Velindre Trust TOTALS Number of New Referrals received Number of Referrals on Waiting List Total Number of Patients on caseload Total number of discharges All Wales Lymphoedema Activity Staffing Levels Lymphoedema All Wales Staffing Levels 2013 Aneurin Bevan UHB Abertawe Bro Morgannwg UHB Betsi Cadwaladr UHB Cardiff & Vale UHB Cwm Taff HB Hywel Dda HB Powys HB Velindre Trust TOTALS Qualified Unqualified Date: Jane Fitzpatrick / Version Final 7

8 Analysis of All Wales Lymphoedema Staff Band 8b Band 8a Band 7 Band 6 Band 5 Total Qualified Staff Band 4 Band 3 Band 2 Total Unqualified Staff Total Staffing Aneurin Bevan UHB HB Staffing Level 2011 (pre Strategy funding) Strategy Funding WTE Totals HB Staffing Level June Variance Abertawe Bro Morgannwg UHB HB Staffing Level 2011 (pre Strategy funding) Strategy Funding WTE Totals HB Staffing Level June Variance Betsi Cadwaladr UHB HB Staffing Level 2011 (pre Strategy funding) Strategy Funding WTE Totals HB Staffing Level June Variance Cardiff & Vale UHB HB Staffing Level 2011 (pre Strategy funding) Strategy Funding WTE Totals HB Staffing Level June Variance Cwm Taff HB HB Staffing Level 2011 (pre Strategy funding) Strategy Funding WTE Totals HB Staffing Level June Variance Hywel Dda HB HB Staffing Level 2011 (pre Strategy funding) Strategy Funding WTE Totals HB Staffing Level June Variance Powys HB HB Staffing Level 2011 (pre Strategy funding) Strategy Funding WTE Totals HB Staffing Level June Variance Band 8b Band 8a Band 7 Band 6 Band 5 Total Qualified Staff Band 4 Band 3 Band 2 Total Unqualified Staff Total Staffing All Wales Position HB Staffing Level 2011 (pre Strategy funding) Strategy Funding WTE Totals HB Staffings Level May Variance Date: Jane Fitzpatrick / Version Final 8

9 Analysiss of the total number of staff providing services to Lymphoedema patients across NHS Wales highlights the fact that since the Lymphoedema strategy monies were made available in 2011, there has been an increase of WTE across NHS Wales Health Boards. The total number of Lymphoedema staff providing services across Wales in May 2013 equated to 49.6 WTE (qualified and unqualified staff). Comparison of All Wales Lymphoedema Stafff WTE AfC Grades a 8b HB Staffings Level May 2013 Staffing Levels April WTE Lymphoedema Staff 15 In September 2013, Powys HB has informed us thatt their WTE has reduced from 2 to 0.4WTE due to staff resigning. Work is underway in repatriating some funds from the voluntary sector and collaborating with the Bracken Trust to form a more robust service. 6. Outline Work Programme The outline work programme for Lymphoedema Service development for has been includedd as Annex 6 and the key themes focus on :- Maintaining the Lymphoedema Network supporting network leads in securing appropriate facilities and capacity management Further developing the Lymphoedema Services in line with the Velindre repatriation Supporting the All Wales Service across North/South and bridging the gap Implementing the cellulitis care pathway and supporting lymphoedema professionals in completing the nonmedical independent prescribing course Education and Training Patient Education throughh All Wales leaflets and programmes supporting self care models Development of Research & Education including auditing impact of new Mobile Lymphoedema Unit and auditing the integrated care pathway Development of the All Wales Lymphoedema Compression Formulary and Contract Reviewing and auditing Paediatric Lymphoedema Services There are a number of areas of concern currently in relation to Lymphoedema Services and the programme of work over the next 12 months will strive to understand thesee issues and make recommendations to Welsh Government and NHS Wales Chief Executives on an appropriate solutions. Areas of concern currently include:- Date: Jane Fitzpatrick / Version Final 9

10 Paediatrics: A Paediatric Lymphoedema service is not currently available in Wales and children are referred to London to receive treatment from a number of specialties including Plastic Surgery and Dermatology. There is an opportunity to repatriate this funding, to support the development of a Regional Paediatric Lymphoedema Service in conjunction with the Children s Hospital for Wales. Further work is ongoing to ascertain number of children with lymphoedema as awareness of lymphoedema in paediatrics is extremely poor. Cellulitis Guidance: There is a 47% risk of developing cellulitis when you have lymphoedema, repeated cellulitis infections also lead to lymphatic damage and lymphoedema. An All Wales approach is needed in developing all Wales Cellulitis Guidance and having dedicated information included on lymphoedema. Further work is needed with the All Wales Medical Director and All Wales Medicine Management Group. Training and Education: Although good progress has been made in raising awareness of Lymphoedema in NHS Wales, there is recognition that there is a poor level of knowledge amongst health professionals and the public of this disease i Support is necessary in allowing community staff to attend learning event to acquire new skills. Compression Garment Funding: Analysis of usage has highlighted the fact that therapists are not able to access flat knit garments from FP10 prescriptions unless ordering made to measure which are at twice the cost. This area needs urgent review and changes to current practice to ensure resources are used appropriately. 7. Recommendations 7.1 CEO s and members of the EDT team are asked to note the progress made by the National Lymphoedema Strategy Programme in the past twelve months and endorse the proposed work programme for 2013/14. i Welsh Government (2010) Strategy for Lymphoedema Designed for Lymphoedema, Welsh Government, Cardiff Date: Jane Fitzpatrick / Version Final 10

11 Annex 1 Programme Management Unit (NHS Wales) Uned Rheoli Rhaglenni (GIG Cymru) All Wales Lymphoedema Network Group Terms of Reference (ToR) Author:, Jane Fitzpatrick, Claire Thomas Owner: All Wales Lymphoedema Network Group Date: 11/06/2013 Version: 0.4 Publication/ Distribution: Revision History Revision date Previous revision date Summary of Changes Changes marked Purpose and Summary of Document: To inform members/partners/stakeholders of progress made against the National Lymphoedema Strategy. Work Plan reference:

12 Programme Management Unit All Wales Lymphoedema Network Group Terms of Reference 1 Background Lymphoedema is a chronic swelling due to lymphatic system failure. It can occur from a congenitally determined lymphatic abnormality or from lymphatic damage by inflammation, infection, trauma, tumour, surgery or radiation. It is chronic and incurable and requires lifelong management. Lymphoedema can affect people of all ages and can occur in any part of the body. It may not occur for sometime after the initial trauma or surgery and patients remain at risk of developing Lymphoedema for the remainder of their lives. Lymphoedema affects individuals physically, psychologically and socially. It has a significant impact on quality of life and the ability to undertake normal activities of daily living. Based on the prevalence of Lymphoedema found in the South West London study of 1.33 per 1,000 there would be an estimate of 4000 Lymphoedema sufferers in Wales. However, looking at the prevalence rates for the last 5 years in the established Welsh clinics shows a rise every year and the average is well over 2 per 1,000. Thus in Wales with a population of 2.9 million at least 6,000 people will have Lymphoedema. Until January 2012, there was wide variation in the organisation and delivery of Lymphoedema services across Wales. Some Health Boards (HBs) offered full Lymphoedema services; others offered services that could only be accessed by cancer patients and then certain areas did not provide any services. Clinics ranged from lone practitioners to small teams; some with administration support others without. Waiting and treatment times varied as well as treatment options. This vast diversity was not a result of patient need and was not patient centred. Unfortunately most people with Lymphoedema went undiagnosed and untreated for long periods of time. This is a consequence of the poor level of knowledge amongst health professionals and the public of this disease. In December 2009, Welsh Government (WG) published the Strategy for Lymphoedema in Wales. The main aims of the Lymphoedema Strategy were; Raise the awareness of Lymphoedema and how simple treatment strategies could improve patient s quality of life Improve health and well being by empowering patients to maximise their own independence and minimise the risks associated with Lymphoedema Integrate, develop, reconfigure and more effectively plan and manage Lymphoedema services throughout Wales in line with the seven HBs and Velindre NHS Trust Improve patient access to Lymphoedema services ensuring that patients receive the right treatment at the right time by the right professional in the right place Provide a comprehensive preventative approach to all patients at risk of developing Lymphoedema thereby reducing the demand on other NHS services Build on the strengths of the current tertiary and secondary care Lymphoedema services integrating services across organisational boundaries incorporating community, primary care and social services Date: 11 June 2013 Version: 0.4 Page: 2 of 8

13 Programme Management Unit All Wales Lymphoedema Network Group Terms of Reference Develop and build on the current available Lymphoedema education enabling health care professionals to easily access local courses to implement in their own practice Clarify the actions needed to implement Lymphoedema services across Wales and improve service delivery In April 2011, WG made available 1 million pounds on a recurring basis to implement the Lymphoedema Strategy and NHS Wales Chief Executives and WG agreed the distribution of these funds across NHS Wales and the principles regarding the allocation of monies. In addition:- Jan Williams, Chief Executive of Cardiff & Vale University Health Board (UHB) was appointed as the lead Chief Executive across Wales and was asked to champion Lymphoedema services. Following the retirement of Jan Williams in April 2012, Fiona Jenkins, Executive Director of Therapies and Health Sciences, Cardiff and Vale UHB has assumed this role on behalf of the NHS Chief Executives., Lead Macmillan Clinical Lymphoedema Specialist, Abertawe Bro Morgannwg University Health Board (UHB), was appointed as Clinical Lead to lead the implementation of the Strategy. Jane Fitzpatrick, Director, Programme Management Unit / Strategic Programmes has been the Programme Director, supporting the implementation of the Lymphoedema Strategy since September Claire Thomas, Programme Manager, Strategic Programme. 2 Objectives The All Wales Lymphoedema Network Group has been established to maintain a strategic oversight of the Strategy for Lymphoedema in Wales Designed for Lymphoedema. The Network Group will be coordinated through a virtual network approach, for NHS Wales and will: Oversee the planning of services for NHS Wales, ensuring the recommendations in the Strategy are implemented locally; Oversee clinical education and training requirements for the network area; Advise on how HBs should respond to strategic developments as they arise; Provide the source of composite advice of HBs to WG when required; Advise on allocation of funding as services change or as funding arrangements change. To provide WG, HB and relevant Boards/ Committees with an overview of activities, responsibilities and performance associated with the delivery of Lymphoedema services to cancer and non cancer patients across the HBs. Review progress, agreeing any necessary actions required to ensure that key milestones and timescales are met. All Lymphoedema patients have access to Lymphoedema services for assessment and management as per the 1million allocation. Date: 11 June 2013 Version: 0.4 Page: 3 of 8

14 Programme Management Unit All Wales Lymphoedema Network Group Terms of Reference Individual HBs (and Velindre NHS Trust) will remain responsible for the delivery of services locally, and Chief Executives will retain accountability for local service delivery. 3 Deliverables i. Recruitment of Lymphoedema staff ii. iii. Education of all Lymphoedema staff Lymphoedema education awareness sessions within HB Establish a Lymphoedema link nurse scheme within community nursing teams Undertake an education and training needs analysis in each LHB Establishment of new Lymphoedema clinics to include suitable and dedicated: Accommodation Equipment Access to correct compression garments Comprehensive IT/Lymcalc process Assessment and standardisation of Lymphoedema treatment needs within the LHB Links with other services tissue viability, dermatology, dietetics Establishment of chronic leg clinics for complex patients iv. Development of evidence based Lymphoedema care pathways including utilising All Wales Referral Criteria All Wales Referral Form All Wales Assessment Forms Cellulitis guidance Integrated care pathway v. Review existing Lymphoedema compression garment protocols Development of links to FP10 prescribing data on compression garments, bandages and stockinet using CASPA incorporation with Community Pharmacy and All Wales National Lymphoedema Formulary vi. vii. viii. Establishment of Lymphoedema prevention sessions For breast cancer patients For other patient groups Establishment of the Lymphoedema data sets for audit Establishment of the Lymphoedema clinical outcome codes Lymcalc data analysis Availability/Establishment of Patient Support Groups, including: Date: 11 June 2013 Version: 0.4 Page: 4 of 8

15 Programme Management Unit All Wales Lymphoedema Network Group Terms of Reference Signposting to EPP Availability of information to patients/carers Availability of dedicated patients information leaflets 4 Scope To provide a forum where actions, timescales and current performance against agreed criteria or performance indicators are monitored and discussed. The Network Group will also develop appropriate additional guidance and quality indicators/metrics, monitor activity and service improvement initiatives. The scope will not include monitoring of other specialities utilising lymphoedema guidance, protocols and polices in their effect and competence levels. 5 Key Activities Establish project team for the repatriation of Staff into Health Boards Standardise Lymphoedema approach Wales Wide Develop care pathways To work closely with colleagues in Community Pharmacy to establish new prescription advice form Develop paediatric lymphoedema policy Establish community Lymphoedema clinics utilising Tenovus mobile unit Develop links with NWIS in implementing lymphoedema minimum data sets Establish support from Public Health Wales communication team for publication of lymphoedema literature and web site 6 Timescales The Velindre NHS Trust Cancer Lymphoedema Service Repatriation of Staff into Health Boards - 1 st October 2013 Standardise Lymphoedema approach Wales Wide - January 2014 Develop care pathways - December 2013 To work closely with colleagues in Community Pharmacy to establish new prescription advice form - September Resources & Membership The Network Group will be made up of the following: Lead Executive Director of Therapies and Health Sciences National Clinical Lead HB Executive and Management Leads Date: 11 June 2013 Version: 0.4 Page: 5 of 8

16 Programme Management Unit All Wales Lymphoedema Network Group Terms of Reference Velindre NHS Trust Clinical and Management Leads Director representative of the Cancer Networks* Patient representative (through representative third sector body) Primary Care representative (HB AMD for Primary Care) Chronic Condition Management/Self Care Representative (WG policy lead and HB lead) * as part of her role within the Cancer Network will inform the group of lymphoedema developments. The Network Group will be supported by a sub-group (the Lymphoedema Clinical Leads), chaired by the National Clinical Lead, made up of the individual HB clinical leads (when in post) and Velindre NHS Trust Clinical Lead, and will undertake operational activities to support implementation of the Network Group s work programme. The Network Group will be administratively supported by the Lymphoedema Service (in conjunction with the Programme Management Unit). The minutes and actions from the meetings will be formally recorded and circulated to members within one month of the meeting. The existing Welsh Association of Lymphoedema Specialists (WALS) will be reconstituted as a Reference Group, chaired by the National Clinical Lead. The Network Group may co-opt additional persons to attend at any time should there be a need for specific knowledge or expertise. These persons will be recorded as being in attendance. Membership of the Network Group will be: Name Role Organisation Fiona Jenkins CHAIR VICE CHAIR Jane Fitzpatrick Claire Thomas Executive Director of Therapies and Health Sciences, National Clinical Lead Director, Programme Management Unit / Strategic Programmes Programme Manager Cardiff & Vale UHB Lymphoedema Services South Wales Cancer Network Programme Management Unit Programme Management Unit Les Hammond Jane Hart Assistant General Manager Cancer Services Lead Nurse Cancer & Palliative Care Abertawe Bro Morgannwg UHB Aneurin Bevan HB Date: 11 June 2013 Version: 0.4 Page: 6 of 8

17 Programme Management Unit All Wales Lymphoedema Network Group Terms of Reference Mike Hague Lead Cancer Services Manager Aneurin Bevan HB Anne-Marie Rowlands Deputy Director of Nursing Betsi Cadwaladr UHB Paula Lawrence Alun Morgan Fiona Wood Deputy Lymphoedema Network Manager Assistant Director of Therapies and Health Sciences Senior Nurse - Primary/Community Resource Team Betsi Cadwaladr UHB Cardiff & Vale UHB Cwm Taf HB Rebecca Luffman Head of Out of Hospital Redesign Cwm Taf HB Vicky Stevenson Audrey Rogers Clinical Physiotherapy Services Lead Assistant Director Therapies and Health Science Hywel Dda HB Hywel Dda HB Helen Annandale Head of Physiotherapy Hywel Dda HB Jason Crowl Lead Locality Nurse Powys Teaching HB Andrea Hague Director of Cancer Services Velindre Cancer Centre Helen Tyler Therapies Service Manager Velindre Cancer Centre Barbara Burbidge Patient Representative Cheryl Pike / Karen Morgan National Education and Research Lymphoedema Specialists Lymphoedema Services 5 members of the Network Group must be present to hold a meeting to include the Chair or Vice Chair. A representative from each Health Board must be in attendance or a suitable representative should attend on their behalf. The Network Group will meet quarterly in the first instance, to be reviewed after one year. The Mid and South Wales and North Wales Networks will meet separately twice a year, and together twice a year. Date: 11 June 2013 Version: 0.4 Page: 7 of 8

18 Programme Management Unit All Wales Lymphoedema Network Group Terms of Reference 8 Dependencies & Constraints Successful delivery is subject to the following: Dependencies: Health Board engagement Tenovus and Macmillan Cancer Support Constraints: Possible lack of funding to undertake the programme of work that is required Timescales for completion of the programme work Accommodation Increase capacity leading to failure in meeting targets 9 Governance Arrangements All Wales Lymphoedema Network Group will be accountable to the Lead Executive Director of Therapies and Health Sciences and WG. The individual HBs (and Velindre NHS Trust) will remain responsible for the delivery of services locally, and Chief Executives will retain accountability for local service delivery. Date: 11 June 2013 Version: 0.4 Page: 8 of 8

19 Annex 2 DESIGNED FOR LYMPHOEDEMA OUTLINE WORK PROGRAMME 2012/13 PRIORITY WORK AREA LEAD MILESTONES PROGRESS 1. Maintaining the Lymphoedema Network Agree Terms of Reference Establish quarterly meetings of Network(s) Establish Lymphoedema Clinical Leads Group Jane Fitzpatrick & March 2012 November 2012 March, June, September, December 2012 for meeting held in November 2012, regular quarterly meeting with clinical leads throughout Wales. Network to review LHB quarterly updates to WG to inform future development of the work programme Jane Fitzpatrick March, June, September, December 2012 for Service Development Monitor TENOVUS Mobile unit usage Develop patients user satisfaction surveys with Cardiff University LHB Clinical Leads May The findings of the Satisfaction surveys were presented at the BLS National conference. Develop practitioner user satisfaction surveys with Cardiff University July 2012 In addition, the service won a Third Sector award for the utilisation of a chemotherapy unit for lymphoedema. Support TENOVUS with the Business case for a dedicated. Business case developed and funding for a second Tenovus Mobile unit secured. Designed for Lymphoedema Work Programme Page 1 Progress Report August 2013 v1 Final

20 Annex 2 PRIORITY WORK AREA LEAD MILESTONES PROGRESS Lymphoedema mobile unit Establish Additional Clinics New clinics to be established in all LHB leads March 2012 LHBs Care Pathways and Treatment Outcomes Develop and audit the new integrated care pathway for lymphoedema & Lymphoedema Clinical Leads March Integrated care pathway audit tool has been developed and an audit will be undertaken in This milestone has slipped as a result of delays in the implementation of the Lymcalc system. Support the development of chronic leg clinics in all the LHB Develop the cellulitis care pathway Develop the breast cancer prevention classes throughout Wales September 2012 December 2012 July 2012 in C&V, CT, Powys, ABM, HD and BC. Delays in ABHB will occur in Autumn Work in this area is still ongoing. Pathway accepted in AMB but needs to be implemented in other HB s. Meeting arranged with Interim director of Microbiology for Public Health Wales in September Prevention sessions now available throughout Wales, In the South east combined with Breast Cancer Care. Develop links between lymphoedema services and obesity links Audit the treatment outcomes and establish numbers of patients not following the ICP December 2012 December 2012 Development of Obesity pathway completed and will be implemented in work programmes., however further work is required in as further data collection is necessary.. Designed for Lymphoedema Work Programme Page 2 Progress Report August 2013 v1 Final

21 Annex 2 PRIORITY WORK AREA LEAD MILESTONES PROGRESS Audit the discharge codes and establish numbers being transferred back to primary care December Supporting Services LymCalc Database Purchase licences for each LHB Work with IT in each of the HB to ensure a safe and smooth transition in downloading information and upgrading existing Lymcalc & Jane Fitzpatrick March 2012 April 2012, however further training needed for ensuring ongoing updates. Dates arranged for January Ensure ongoing updates/maintenance arrangements in place October 2012 in certain HBs, however further education in the South East Wales HBs is required. Date arranged for further training. Use LymCalc to inform development of consistent data sets for use locally and nationally May/ August 2012 Develop Lymcalc training for all Lymphoedema staff Purchase of Compression Garments Additional compression garments purchased for 2011/12 and C&V Procurement March 2012 Organisations to undertake, November 2012 Designed for Lymphoedema Work Programme Page 3 Progress Report August 2013 v1 Final

22 Annex 2 PRIORITY WORK AREA LEAD MILESTONES PROGRESS baseline assessment of spend for 2010/11 plus LHB Leads and One Value Wales project Further meetings with One Value Wales project for central purchasing of compression garmentsestablishing an All Wales Contract & Jane Fitzpatrick Ongoing All Wales Lymphoedema Procurement Group established. All Wales compression garment contracts tender process live from October further work highlighted for work programme with All Wales Medicine Management group. Establish links with all pharmacy managers within WG and LHB reviewing spend on FP10 on the CASPA system. & Jane Fitzpatrick Ongoing Identify true costing of garments being prescribed including postage and package fees plus distributer costs & Jane Fitzpatrick Ongoing 4. Education and Training All education and training packages to be accredited by Agored Cymru All lymphoedema staff to complete Agored Cymru assessment unit Clinical lead and practitioners to LHB Clinical leads March 2013 August 2012 Ongoing 6 units completed work underway on others. Designed for Lymphoedema Work Programme Page 4 Progress Report August 2013 v1 Final

23 Annex 2 PRIORITY WORK AREA LEAD MILESTONES PROGRESS receive lymphoedema update course Clinical leads to provide local awareness training March 2013 and included in work programme Present Welsh Lymphoedema Strategy implementation update at British Lymphology Society Conference 2012 and Jane Fitzpatrick October 2012 Support Clinical leads to complete abstracts for BLS conference July posters presented as well as oral presentations Develop an annual All Wales Sharing Good Practice Day and Jane Fitzpatrick March 2013 Development of an All Wales Lymphoedema Website 5. Patient Education Development of 12 booklets for conditions including : - Upper limb lymphoedema prevention and treatment - Lower Limb lymphoedema prevention and treatment - head and neck oedema and Jane Fitzpatrick Lymphoedema Clinical Leads Group March 2013 March 2013 Website intranet developed and available via HOWIS Patient web site under development and will include relevant waiting times corresponding to Health Board area. All Booklets completed and written will be published in the Autumn Designed for Lymphoedema Work Programme Page 5 Progress Report August 2013 v1 Final

24 Annex 2 PRIORITY WORK AREA LEAD MILESTONES PROGRESS - genital oedema - exercises - multi layer lymphoedema bandaging - MLD massage - Scar massage - Emotional effects of lymphoedema Accreditation of patient qualifications and Agored Cymru March 2012 Review of lymphoedema support groups in Wales and Clinical leads January 2013 Patient information boards available within all services specific supports groups are establish but ongoing work as to patients benefit needs to be ascertained. Development of 3 patients support days North, South west and South east and Clinical leads March 2013 Work ongoing- first patient conference commences on September 16 th Development of a Research and Education Post Dedicated 1 WTE in education and research for Wales Promote research and audit in all Lymphoedema services and Jane Fitzpatrick April 2012 All completed, post started November Journal club and patient s satisfaction survey completed. Designed for Lymphoedema Work Programme Page 6 Progress Report August 2013 v1 Final

25 Annex 2 PRIORITY WORK AREA LEAD MILESTONES PROGRESS Become the principal investigator in trials within Lymphoedema services New RCT commencing in September Review Paediatric Lymphoedema services Establish numbers of paediatric cases on case loads and Jane Fitzpatrick March Develop links with paediatric specialist services linked with Community Nurses all Wales/ meeting with WG Paediatric Officials Discover current welsh paediatrics case loads in other hospitals. Business case for paediatric lymphoedema specialist practitioner Work ongoing need further information prior to business case being developed Designed for Lymphoedema Work Programme Page 7 Progress Report August 2013 v1 Final

26 Annex 3 Welsh Government Lymphoedema Strategy Objectives Key Actions Required Outcomes Benefits Realised Improved Access Planning and delivery groups must ensure that all patients have access to lymphoedema services for assessment and management Better Services Develop Evidence based lymphoedema care pathways and implement across all health care settings to manage lymphoedema and the obstacles to recovery Review and standardised patient information leaflets on preventative strategies and self management Implement education and training packages for all health care professionals to support better management of lymphoedema and reduce associated risks Develop evidence based cellulitis care pathways and implemented use across all health care settings All breast cancer patients must have access to lymphoedema prevention and education schemes to reduce their risk of developing lymphoedema. All lymphoedema services in conjunction with physiotherapy and dietetics will offer an active management programme for obese patients. Assessment tools and referral forms must be centrally developed and implemented for use across all lymphoedema services in Wales Develop and implement lymphoedema referral protocols and criteria Ongoing All Health Boards have dedicated Lymphoedema services providing equitable care for all sufferers regardless of lymphoedema cause ending the previous postcode lottery. Care pathways have been created in delivering standardised lymphoedema referral, assessment and care across Wales. Patient regardless of their location in Wales can access the same good quality care All Patient leaflets have been developed and written and will be published Autumn units have been accredited by Agored Cymru with a further 6 units to be written by All Lymphoedema education is now standardised in Wales with learners accessing work based qualifications if they so desire. Cellulitis care pathway has been developed and accepted in some health Boards but needs further work in achieving at an all Wales Level. Meetings arranged with Microbiology and further support needed form Welsh Government. All breast cancer patients undergoing axillary intervention are now offered routine lymphoedema prevention advice and rehabilitation throughout Wales. The Lymphoedema Obesity Policy and procedure document has been developed and will be formally launched in November Following launch of policy further collaboration with dietetics and physiotherapy services within each of the Health Boards will occur. All referral and assessment tools are standardised throughout Wales. All referral protocols and criteria are standardised throughout Wales. Welsh Government Lymphoedema Strategy Objectives August 2013 Version v1 Final Page 1

27 Annex 3 supported by appropriate training across all health care settings to aid early assessment and diagnosis of lymphoedema An Audit or review must be carried out to evaluate services and examples of good practice dissemination Assess and review the ongoing needs of lymphoedema patients in conjunction with chronic condition management Establish community lymphoedema sessions for lesser complex patients to be delivered in community hospitals /GP surgeries Individual patient care plans must include a category for self management, for access to weight reduction programmes and signposting patients to Expert Patient Programmes Review appropriate information and support groups available for all lymphoedema/ chronic oedema enabling patient signposting Implement unpaid carers to be actively involved in the joint care planning to help them look after the patient and ensure they are working safely to prevent stress or injury to themselves Implement lymphoedema education and training packages, aimed at all levels of staff to support better management of lymphoedema / chronic oedema and reduce associated risks like cellulitis An education and training needs analysis must be undertaken to determine the training required in each of the An all Wales service evaluation was completed in January This highlighted the excellent work that was occurring through Wales and included patients statements regarding the care received. Further work planned for impact of new services in Focus Groups to be completed by December 2013 All Wales service review and further research being tasked. Patient integrated pathway developed and accessed across Wales. New Tenovus Mobile Unit offering community care throughout Wales. Chronic Leg clinics occurring in community venues and GO surgeries across Wales. All care plans developed and accessed across Wales. Patients self managing Agored unit available. All Health Board Lymphoedema services have patient information boards with relevant information on for patients. Patient lymphoedema Walking groups and Choirs have been established in certain areas of Wales for Lymphoedema patients with good researched benefits. Carers advice sheets have been developed and are available throughout Wales 12 Agored Units are available and a further 6 will be developed throughout A lymphoedema education needs analysis was completed in Ongoing training needs to highlighted with the new National education and Research Lymphoedema specialist post Welsh Government Lymphoedema Strategy Objectives August 2013 Version v1 Final Page 2

28 Annex 3 HB enabling the implementation of the proposals in this report. Carry out an audit of lymphoedema patients gaining access to assessment, treatment, cellulitis, and prevention schemes. Carry out an audit of all lymphoedema referrals and documentation. Implement lymphoedema data sets that can be utilised throughout Wales. All lymphoedema services providing care must complete data sets to be analysed through the LymCalc computer programme. Data must be reviewed and monitored against the Diagnostic and Therapy waiting time targets Report annually on levels of lymphoedema clinical outcome codes and make recommendations based on audit findings to further improve lymphoedema services Review and implement lymphoedema compression garment protocols and improve central purchasing. Ongoing All patients in Wales with Lymphoedema can access assessment and treatment. Issues still exist with paediatric cases in Wales but development work is underway All referral information is audited within the health Boards and statistics are reported on a monthly basis to the National Posts All services in Wales have access to the Lymcalc programme. Teething problems are occurring with different servers and meetings are planned with NWIS in developing minimum data sets. All Lymphoedema services are meeting the therapy time waiting targets. In Fact all services are meeting the targets of 18 weeks. Outcome codes are completed and reported on a monthly basis. The services which are long established have increased capacity but lesser capacity where as the newer services are seeing less but complexity is sever. Task and finish and implementation groups for the All Wales compression Garment contract and Formulary are well under way. The contract will be out to tender in September 2013 with implementation of the contract and formulary in October 2014 Welsh Government Lymphoedema Strategy Objectives August 2013 Version v1 Final Page 3

29 Annex 4 Quality Domain Patient Views Lymphoedema Service Indicator All lymphoedema services throughout Wales have user/support groups available on at least a quarterly basis Information and signposting to Healthy Living Schemes, Expert Patient Programmes should be available in waiting room in lymphoedema clinics Linkage to Health Care Standards 1, 2, 6, 7, 10 12, 29, 31 Outcome for Patients Patients with Lymphoedema become Expert Patients able to manage their chronic condition, and be aware of community support services to further enhance their independence Means of Measurement Evidence of the establishment of User/support groups and frequency of meetings. Evidence of availability of information and signposting in lymphoedema clinics to Special Patient Programmes. Outcomes/ Benefits Realised by July 2013 Lymphoedema Support groups occur in Swansea/ Neath Port Talbot, South East Wales and North Wales. Further work is needed in promoting support group conception in other areas. Patient Information boards are available in all services giving patients relevant access to leaflets and information. An All Wales Lymphoedema Newsletter has just been developed and has been disseminated August 2013 Agored patients living with lymphoedema unit is available for all patients to access throughout Wales Patient communication and choice Patients and carers engage in joint planning of their treatment. Patients can access the most suitable location where they can gain treatment 1, 2, 5, 6, 7,12,15,30, 31 Empowered to manage their condition on a daily basis An option to access the most suitable lymphoedema treatment centre Audited Networked or All Wales Patients Satisfaction Questionnaires South Wales patient s day being held in September All patients are involved in their care planning and developing skills in self managing lymphoedema. All Wales satisfaction survey completed in November New research study commencing this summer discovering patients Quality Indicators for Lymphoedema v1 Final

30 Annex 4 within their area. perceptions of attending lymphoedema services. Service Delivery/Timelin ess Clinical Competence Agreed waiting times for palliative (2 weeks), urgent (4 weeks) and routine referrals (26 weeks). Evidenced based effective efficient management of lymphoedema available throughout Wales. Lymphoedema Therapists should be fully lymphoedema trained and attend lymphoedema updates every 2 years to maintain competency. 2, 3, 10, 11, 12, 13, 22, 23, 28, 30 2, 4, 5, 8, 11, 12, 14, 15, 19, 26, 27, 28, 29 Reduction in waiting times for first assessment at specialised Lymphoedema clinic Patients are offered the best evidence based treatment within the resources of the service Patients are treated by therapists who are fully trained in lymphoedema Waiting times recorded throughout Wales and breaches reported All Wales audit of treatment protocols and availability Lymphoedema Therapists competency skills are recorded on an annual basis Lymphoedema services now available throughout Wales additionally have access to the Tenovus Mobile Unit for local delivery of lymphoedema services. All waiting times are recorded in Wales. All services have met the 26 weeks target and for this has been reduced to 18 weeks. An audit has commenced in July 2013 for 6 months recording waiting times for palliative and argents as well as routine patients. A significant amount of work has been completed in ensuring effective management of lymphoedema patients. Protocols, Procedures and Policy document have now been developed in all aspects of care ensuring standardisation across Wales in all treatments modalities. Education Needs document and competency now live and updated monthly. Quality Indicators for Lymphoedema v1 Final

31 Annex 4 Effective Treatment and Care Compliance with the British Lymphology Society international consensus on management of cellulitis 2, 3, 11,12, 13, 16, 27, 29, 31 Reduction in the frequency of episodes of cellulitis for lymphoedema patients Audit of Patients admitted to acute units with cellulitis. Cellulitis management needs further work to ensure standardisation across Wales. ABM UHB and BCHB have Lymphoedema/ chronic oedema guidelines for lymphoedema included within their antimicrobial policies this need unifying and dissemination across Wales. Meetings are ongoing with All Wales Medicine Management Group and meeting planed with Director of Microbiology for Public Health in September Quality Indicators for Lymphoedema v1 Final

32 Annex 5 Lymphoedema Wales Welsh Government Issue 1 Summer 2013 A warm welcome to the first edition of Lymphoedema Wales, your National Lymphoedema Newsletter! Included are stories, news and reports of service developments from each of the Lymphoedema Services across Wales. This will give you an idea of the wonderful work that is taking place near to you. Telephone numbers for all the services can be found at the back of the newsletter. If you have any queries please make contact with your local lymphoedema service. Thank you to all the lymphoedema staff for submitting to this first Newsletter. We hope you enjoy the write ups and share the work that is being achieved. With kind regards, Cheryl and Karen Foreword Lymphoedema services in Wales have dramatically changed over the last few years and this is due to the hard work of key individuals, most especially Eilish Lund, who has now retired blissfully in France knowing that she has laid the foundation for patients to access lymphoedema services throughout Wales. We have been fortunate with support from Welsh Government and the Programme Management Unit in taking lymphoedema into a strategic direction. I am delighted with this the first newsletter - Lymphoedema Wales - which showcases what we have achieved in such a short space of time. Congratulations and well done to all those involved, but remember, this is just the beginning! Kind regards, MBE National Clinical Lead Lymphoedema All Wales Lymphoedema Network Group The All Wales Lymphoedema Network Group was set up in 2011 following the 1 million investiture into implementing the Welsh Government Lymphoedema Strategy (2009). This Group is a led by Fiona Jenkins (Executive Director of Therapies and Health Sciences, Cardiff and Vale UHB), Chief Executive of Lymphoedema Services on behalf of the NHS Chief Executives;, National Lymphoedema Clinical Lead who is directing the implementation of the Strategy, Jane Fitzpatrick, Programme Director, Programme Management Unit / Strategic Programmes, and Claire Thomas, Programme Manager, Strategic Programmes and Health Board Network Leads. The All Wales Lymphoedema Network Group has been established to maintain a strategic oversight of the Strategy for Lymphoedema in Wales Designed for Lymphoedema and will: Oversee the planning of services for NHS Wales, ensuring the recommendations in the Strategy are implemented locally; Oversee clinical education and training requirements for the network area; Advise on how Health Boards should respond to strategic developments as they arise; Provide the source of composite advice of Health Boards to Welsh Government when required; Advise on allocation of funding as services change or as funding arrangements change; Provide Welsh Government, Health Boards and relevant Boards/ Committees with an overview of activities, responsibilities and performances associated with the delivery of Lymphoedema services to cancer and non cancer patients across the Health Boards; Review progress, agreeing any necessary actions required to ensure that key milestones and timescales are met; All Lymphoedema patients have access to Lymphoedema services for assessment and management as per the 1million allocation. Individual Health Boards (and Velindre NHS Trust) will remain responsible for the delivery of services

33 Annex 5 locally, and Chief Executives will retain accountability for local service delivery. Congratulations to Melanie! Fiona Jenkins, Chair of the All Wales Lymphoedema Network Group, would like to inform all colleagues of how proud we all are of (Lewis), who has been awarded an MBE in the recent national awards. This is testimony to Mel's leadership and passion for improving services for Lymphoedema which all of Wales has benefitted from, and now has the much deleveraged national recognition...well done Mel! National Lymphoedema Roundup With the funding from Welsh Government in 2011, lymphoedema services have been set up throughout Wales to ensure equity of access and care for all people with lymphoedema/chronic oedema, regardless of the cause. (nee Lewis), the National Clinical Lymphoedema Lead for Wales has worked tirelessly with the various Health Boards in setting up new lymphoedema services and ensuring established services were able to provide the required level of care according to the All Wales Lymphoedema Strategy published in In an effort to support the aims and objectives of the Strategy, a National Lymphoedema Education and Research Specialist role was created with Karen Morgan and Cheryl Pike being appointed a job share. Karen, Melanie and Cheryl A breakdown of the work that has taken place over the last six months is summarised below: Education One of the first roles was to develop education courses that would be accredited and would recognise the level of skill and knowledge that participants would be achieving. Newly accredited modules for the management of lymphoedema have been, and continue to be created in collaboration with Agored Cymru. The modules that have run thus far include Skin Care, Simple Lymph Drainage, Key Worker Skills for the Management of Chronic Oedema, Lower Limb Multi-Layered Bandaging (MLLB), Upper Limb MLLB and Exercise in Lymphoedema. To date 27 lymphoedema staff have successfully completed the Simple Lymph Drainage (SLD) module and 14 lymphoedema assistant staff have completed the Skin Care module; all staff have passed their assessment and are awaiting their certificates of accreditation. Future courses being planned include Casley-Smith Manual Lymphatic Drainage (MLD), Update in MLD, Specialist Skills for Head & Neck, Breast, Gynae and Obesity related Lymphoedema; Compression Garments, Advanced Assessment Skills and an exciting opportunity for patients and carers to do a module called Living with Lymphoedema. All Wales Lymphoedema Service Survey In October and November 2012, an All Wales Lymphoedema Service Survey was undertaken and the results were presented at the Sharing Good Practice study day in Bridgend in April This survey was a trial for future audit purposes but it did demonstrate the excellent work the various services are doing. Of the 591 forms that were returned for evaluation, 24 forms had to be excluded as the incorrect forms had been issued; thus 567 forms were audited. Some of the results from the audit include: 82% of people did not have difficulty accessing their lymphoedema service 96% answered that lymphoedema had been explained to them

34 Annex 5 60% of people knew what the risk factors were to developing lymphoedema 96% stated that the management of lymphoedema was explained to them 83% of people felt it was very easy to follow the advice given by their therapist; 10% felt it was easy Have you received any of the following? Yes No N/A 1. Skin care advice 86% 3% 1% 2. Exercise, movement and activity advice 3. Simple Lymph Drainage (SLD) (self-massage) 81% 5% 3% 64% 16% 6% 4. Garment care 74% 5% 7% 5. Weight management advice 59% 16% 12% Pop-Ups 14 informative pop-ups have been printed and distributed to all lymphoedema services across Wales as an educational and promotional tool. Plans to audit the effectiveness of these pop-ups are being discussed and each service will have the freedom to decide on the format of the audit they would like to perform. We look forward to finding out what impact these pop-ups will have on patients and staff! Standardisation of Lymphoedema Services As part of ensuring all clinics provide equitable services, policies and procedures are being drafted for the various skills and equipment currently being used within the services. These include: Measuring Limb Volumes to Determine Lymphoedema Outcome Lymphoedema Vascular Assessment Policy (Toe Brachial Pressure Index / TBPI) Lymphassist Protocol for Lymphoedema THOR Laser Protocol for Lymphoedema Deep Oscillation Protocol for Lymphoedema Management Strategy for Lymphoedema Patients with a Body Mass Index (BMI) equal or greater than 30 kg/m² Lymphoedema bandaging and lymphoedema care plans have been designed to aid staff and carers in assisting patients manage their lymphoedema. We are awaiting final approval from the Lymphoedema National Network prior to dissemination across the country. Lymphoedema management leaflets are in the final stages of redrafting prior to approval by Public Health Wales for printing. As part of their National role, Melanie, Karen and Cheryl provide clinical support and supervision to all services. Those services having had this support have reported positive feedback and all have requested future dates for these sessions. Independent Prescribing Currently there are 3 independent prescribers in Wales which has contributed to a comprehensive and timely treatment for patients. As we all know the current system in prescribing garments utilising General Practitioners and Pharmacies is proving challenging. To rectify this we have had a series of meetings with the Welsh Medicines Management Group and the Community Pharmacy Wales Group, looking at improving the system throughput. A pilot has commenced in ABM UHB where 2 independent nurse prescribers are issuing prescriptions for garments, antibiotics and bandages direct for patients to take to their pharmacy. This is taking the GP practice out of the system. This pilot is in its infancy; however definite improvements can already be seen. The plan for the near future is that each health board lymphoedema service will train staff so that each service will have an independent nurse prescriber within their team.

35 Annex 5 Paediatric Services An audit of paediatric lymphoedema patients is underway. We currently have in excess of 30 children with lymphoedema in Wales. A new protocol for management is being created with support from the Community Children s Nurses. Meetings and presentations have occurred with the All Wales Community Children s Nurses and Welsh Government officials for paediatrics, and further work is underway. The long term goal is a dedicated Lymphoedema Paediatric Specialist. Welsh Compression Formulary We have been working extremely closely with shared procurement services and SMTL in creating a tender document as well as an evaluation which is robust and patient focused. In the forthcoming months the tender process will commence which will enable us to formulate the National Lymphoedema Formulary. This will ensure that patients are having the best products and the NHS will be purchasing at the best price. Round-Up from Services across Wales Aneurin Bevan Health Board The lymphoedema service is based at St Woolos Hospital, Newport which means patients suffering from lymphoedema/chronic oedema can now have access to expert care and a high quality service. A spokesperson said that, Aneurin Bevan Health Board have established and will improve dedicated lymphoedema services in their localities to ensure patients receive the right treatment at the right time by the right professional in the right place. Wellbeing Day Aneurin Bevan Lymphoedema Service was established in the autumn of 2011 and provides treatment for all types of lymphoedema. They recently held a Health and Wellbeing Day for patients attending the Lymphoedema Clinic at St Woolos Hospital, Newport. Sister Kim Wyness said The patients really enjoyed the day; we invited 25 people to the unit and we offered them massage treatments, facials, skincare workshops and relaxation techniques throughout the day. We also had speakers at the event talking about how to reduce stress, tips for a good night s sleep and how to reduce the risk of infection. During the day, ten patients signed up to a new walking group which started in April; although the nursing staff are already walking three times a week at lunchtime. The group is called `Walk With Us` and has been funded by the cancer charity, Tenovus. Staff from the clinic also walked across the Severn Bridge in their onesies! in May to raise funds for the St David's Foundation. Betsi Cadwaladr (North Wales) Lymphoedema Service The last year has seen interesting changes with the retirement of Eilish Lund (happily living in France without a care in the world!) and Wrexham Clinic moving into their new accommodation. We have welcomed new members of staff and really consolidated the existing North Wales team, meeting regularly to share ideas, case presentations from staff members and peer reviewing, taking the service for North Wales ever forward. The pace of service improvement has been rapid and we have as a group, been able to take advantage of 3M training - a subsequent audit of the efficacy of this new bandaging system is being

36 Annex 5 done - Kinesio Taping and MLD updating. All of this activity adds to our existing practice and provides extra management options for the patients sometimes combining the more established management options with exciting new ones! All clinics are now equipped with a Deep Oscillation Hivamat and there are 3 THOR lasers circulating within North Wales, thanks to some very generous donations of money. These pieces of equipment are being tested to the maximum to investigate the most effective treatment protocols for our patients. There has been exciting advancement of the existing weight management clinic in Wrexham with input from Dr. Richard Corney, Consultant Psychologist, which is being audited to assess its strengths and evaluate how best to move this very important aspect of Lymphoedema management forward. In the future - hopefully not too far away now - two of the clinics currently in Glan Clwyd and St. David s Hospice, Llandudno, will move to new accommodation in order that services can be truly multidisciplinary and work with other Allied Health Professionals such as Physiotherapy, Tissue Viability, District Nursing, Occupational Therapy and Podiatry. This collaborative working is harnessing the expertise of all these services to achieve greatest benefit for each of the services and maximises patient management, because as we all know, Lymphoedema rarely comes alone. Satellite clinics for those in rural areas have been commenced and there is now access for Anglesey patients to be seen at Cefni; and for those from Dolgellau, a satellite clinic is held at Allt Wen. Looking to the future with a service moving from St. David s Hospice, Llandudno, there has been a satellite clinic established at Llandudno General Hospital every Friday morning 9am-12pm, so that patients East of Bangor up to Llandudno and down to Pentrefoelas only need travel as far as Llandudno; keeping travelling time to under 30 minutes to a clinic. With so much that has happened in a year it is difficult to do everything we have done justice, and we as a team are looking forward to the next twelve months to see what it will bring. Velindre NHS Trust Work for the proposed repatriation of the Velindre Cancer Centre Lymphoedema Service to the Cardiff and Vale, Aneurin Bevan and Cwm Taf Health Boards is ongoing. The new proposed date for the repatriation is 1 st October In the interim new cancer related lymphoedema clinics have been under development through collaboration with the various health boards. A qualified staff clinic based in Whitchurch Hospital for Cardiff and Vale patients commenced in April 2013; and qualified and support worker clinics in Dewi Sant Hospital for Cwm Taf patients will commence on 21 st May Following a service review audit that was completed in February 2013, alterations to service delivery have been implemented to ensure that standards of care are enhanced and waiting times are reduced. These have included dedicated new patient clinics both in one to one and group format. The new patient groups will take place on the Tenovus Mobile Unit and an audit of the effectiveness of new patient assessment, and comparison of group versus individual assessment is about to commence. It is hoped that this work will ensure that patients are seen sooner for their initial assessment and that the service being delivered is as effective as possible. A further audit that has been completed recently is regarding the information patients know about lymphoedema following treatment for breast cancer. This audit was completed to support the collaborative work being undertaken with Cwm Taf, Cardiff and Vale and Aneurin Bevan Health Boards and Breast Cancer Care for the development of Lymphoedema Prevention for Breast Cancer patients. The results demonstrated that 48% patients felt they were informed of breast cancer related lymphoedema pre-operatively and 61% felt they were given information post-operatively.

37 Annex 5 Although we know breast care nurses provide all patients with lymphoedema advice, this evidence suggests that patients are not recalling or remembering this information and supports the need for development of further lymphoedema prevention intervention. Cardiff & Vale University Health Board A ST DAVIDS DAY TO REMEMBER!! Friday March 1st, 2013 saw the launch of the new Lymphoedema Service in Cardiff & Vale University Health Board (UHB). The NEW clinic has been established to provide advice, help and support for people with lymphoedema living within Cardiff and the Vale of Glamorgan; and it is proving a success. The clinic has already helped hundreds of patients and has recently enjoyed an official opening ceremony. Fiona Jenkins, the Director of Therapies for Cardiff and Vale University Health Board, said: The new therapist led Lymphoedema Service is based in a newly refurbished department at Whitchurch Hospital and has been set up in line with the Welsh Government s Lymphoedema Strategy. There are already more than 250 people making regular use of the service which is helping to improve their quality of life in a number of ways and I would like to thank everyone involved in setting up the service for a job well done. The service is aimed at non-cancer related lymphoedema patients and as a prevention service for cancer patients whose treatment may increase their risk of developing lymphoedema. Treatments that are offered consist of a combination of skin care advice, movement and exercise information, compression (garments and multi-layer lymphoedema bandaging) and lymphatic drainage techniques. The clinic works in collaboration with other services within the UHB to ensure the patient receives appropriate holistic care that is required to manage this chronic condition. Tanya Ball, the clinical lead for the lymphoedema service, said: The new service has been very well received by patients. It is making a real difference to their care and helping to manage the condition. Service users Jacqueline Rattray and Nadir Robani were invited to the launch, both expressing their sincere gratitude for this new service and the benefits they have gained from receiving treatment at the Whitchurch Clinic. Jacqueline and Nadir officially open the clinic MAKING A DIFFERENCE Since January 2012 the new lymphoedema service at Cardiff & Vale UHB have been working hard to improve the lives of those people in the Cardiff & Vale area who are living with Lymphoedema. As we know, current statistics report that lymphoedema affects around 6,000 people in Wales and has an emotional, as well as a physical, impact on the individuals living with this chronic condition. Following the initial set up of the service which involved visiting people at their own homes (and moving offices three times!) the team of five have been based at their new clinic in Whitchurch Hospital since September 2012 and continue to make a difference to patients lives. Many patients treated at the clinic have been able to make lifestyle changes with the advice and support provided by all levels of staff at the clinic. One patient felt that the new service has changed his life, and receiving a letter for treatment was like Christmas day! Since undergoing a course of multi layer lymphoedema bandaging this gentleman is now self managing his condition with skin care, attending the gym and use of

38 Annex 5 compression garments. The treatment Before has made such a difference to After his life that following 8 years of being unemployed he stopped receiving benefits and has been phased back into full time employment. Another success story of a young lady, referred to the clinic by her tissue viability nurse, has also successfully undergone lifestyle changes. She now has a more positive outlook on her everyday life. Personal hygiene needs were addressed along with weight management issues. Together with support from the community resource team and treatment which included a course of bilateral below knee lymphoedema bandaging she has lost five stone in five months. This weight loss was aided by the loss of 8 litres of fluid from each leg during her intensive treatment phase. With assistance from her father she has continued her self-management regime and weight loss plan with the hope of losing more weight. Pre- and post-bandaging (MLLB) Of the more than 250 patients that have been seen at the Whitchurch Clinic, these are only two examples of the impact this new service is having on peoples lives. The team as a whole continue to strive to spread the Lymphoedema word and improve patient s lives. Cwm Taf Health Board Cwm Taf Health Board Lymphoedema Service was successfully launched in November 2012 with the Health Board s Deputy Chair opening the service. Since commencing the service Cwm Taf Lymphoedema team now has 140 patients on its caseload. Karen Wingfield, the clinical lead for the lymphoedema service said, Since we started we have moved our clinics in the north of the Health Board from the old St Tydfil s Hospital to the purpose built Keir Hardie Health Park, Merthyr Tydfil, where the clinic rooms are spacious and very suited to seeing our patients. Clinics are held across two sites: Pontypridd and Merthyr Tydfil. Various education and training events have taken place including a training day for Practice Nurses and District Nurses in March and May Presentations to the Cancer Multi-Disciplinary Teams, GP practices, Continuing Professional Development Forums and podiatry services have also been held. Forthcoming talks will be for the community podiatry teams, practice manager forums and the District Nurse team leader meetings. Exciting new service developments have been commenced including: Joint complex leg clinics are being held with Tissue Viability Nurses (TVNs) every 4 months. In between these clinics the TVNs and podiatrists attend clinics if there is need for a joint treatment plan with each of these specialist services. Diane Jehu, Lymphoedema Nurses, is leading on educational sessions for the Prevention of Lymphoedema following Breast Cancer treatment which commences in May 2013, and will be held alternatively between the Pontypridd base and Merthyr Tydfil clinics. Wendy Dury, Lymphoedema Assistant, is hosting classes to teach Simple Lymph Drainage which is an important self-massage to aid in the management of lymphoedema. Karen Wingfield says A big thank you to all colleagues, patients and the public for your ongoing support, patience and tolerance whilst we have been setting up our services!

39 Annex 5 Hywel Dda Health Board Hywel Dda Lymphoedema Service provides a service to the entire population of Hywel Dda in whatever environment suits an individual s needs at that point in time - the service has the flexibility to adapt and treat a patient in any environment from inpatients, outpatients, satellite clinics, community, multi-disciplinary joint visits or clinics. The overall clinical objective of all services is to prevent hospital admissions by promoting and facilitating self management, patient education, and Health Care Professional awareness and education. Treatment interventions are directed towards ensuring maximal independence and selfmanagement. Each of the 3 services provide their service to meet the needs of that population: - for example, the Ceredigion Lymphoedema Service commenced officially in September 2011 with funding via the Welsh Assembly Governemnt; in line with this, the service has a strong community link and aims to provide a service as close to the patient s home as necessary. There are currently 1195 patients across the Health Board receiving active treatment, and during the period April 2012 to March 2013, 550 new patients were seen. From the data on lymcalc we did a snapshot of people s Body Mass Index (BMI) levels and below is a table showing average percentage number of patients on the active caseload who have a BMI of over 30: Patient Obesity Levels Region Percentage of BMI >30 Carmarthenshire 40% Pembrokeshire 62% Ceredigion 51% Hywel Dda Average 51% We are currently treating a lady with a BMI of 97which has proven extremely challenging! However, through bandaging her right leg twice a week over 3 weeks, we have been able to reduce her limb volume from 38,363 litres to 19,460 litres - this equates to a loss of fluid of 3 stone in weight! There were obviously immediate positive implications with this excellent outcome in that she had better movement of the leg, her activities of daily living were easier to perform, and the goal of treatment is to enable the lady to sit in her wheelchair. Once this has leg reduction has been stabilised, we plan to bandage her left leg. Service developments for the Health Board include: Prevention and Support Groups: the new Tenovus Mobile Unit will host the Lymphoedema Prevention across the 3 counties in the near future. We also envisage that hydrotherapy courses and Tenovus Walk With Us groups will be established and introduced across the 3 counties. Welsh translation recording for Simple Lymph Drainage: the lymphoedema assistant working in Ceredigion is to undertake this task because the Ceredigion locality has a high population of welsh speakers, and she feels strongly that it is very important to develop a welsh language description of SLD for these patients. This will be done in a professional recording studio and CDs will be leant to our patients. Lymph-Assist clinics have been set up throughout the 3 counties with good results. National Talks and Presentations: The Lymphoedema Service Lead in collaboration with the Head Nuclear Medicine Radiographer presented a study in the use of lymph-assist at the British Lymphology Society s (BLS) Annual Conference in October The Ceredigion team are to do a joint presentation on Excellence in Collaborative Work with Dr. Rowlands (GP) and the Practice Nurse based in Brynmeddyg Surgery, Llanybydder, recognising the fantastic development of Multi-Disciplinary Team working in the community setting. Pembrokeshire lymphoedema service is currently partaking in a joint audit with the Cancer Bank Clinical Nurse Specialists to look at

40 Annex 5 numbers of patients with IDC (invasive ductal carcinoma) that are referred on to the service. The results will hopefully be presented jointly as a poster in 2013/ Powys Lymphoedema Service Powys Lymphoedema Service was established in December 2011 with Delia Keen and Elizabeth Coveney sharing the Lymphoedema Clinical Lead post, and supported by Karen Jones, the Lymphoedema Assistant. Accommodation for the service has been challenging, however in April 2012 the service was able to set up base in Builth Wells Community Hospital, mid-powys. A satellite clinic has also been established in North Powys based at Llanidloes Hospital. Powys is currently in the middle of reorganising how services are being delivered and as a consequence the service base will soon have to move from Builth Wells, however, as yet, there is no indication as to where a suitable alternative base may be found. Since December 2011 the service has received 191 referrals, of which 137 are on the active caseload, and 11 on the waiting list (the longest waiting time is less than 4 weeks). Patients have been repatriated from Hereford Lymphoedema service and Usk House (a Charity service based in South Powys), and stronger links are being built with the Bracken Trust (a Charity service based in mid Powys). The aim in the next few months is to set up a referral process for patients needing lymphoedema prevention advice and support following cancer treatment. This will be quite a challenge as Powys patients receive treatment for cancer at Velindre and Swansea, but also Shrewsbury, Gloucester, Hereford, Birmingham and Liverpool! We have used Juxta Cures with 3 patients as an alternative to bandaging when there has been ulceration present. The case study below is to be published in a Nursing Journal during June April 2012 April 2013 Strong links have been established with the District Nursing teams through the weekly Leg Clubs taking place across Powys. On the back of this, a Link Nurse/ Key Worker group has been set up and they meet twice yearly to keep up to date with service developments and training. These nurses take the lead within their teams for collaboratively providing care, particularly with toe bandaging and Multi- Layered Lymphoedema Bandaging (MLLB), and recognising when a referral to the lymphoedema service is required. The lymphoedema service leads have both been involved with teaching on the Palliative Care Masters Level Module, a University course which is held in Powys. Delia has also presented to the Powys Clinical Effectiveness Committee about the work of the new lymphoedema service. Our congratulations to both Delia and Elizabeth for completing their Masters Degrees! They are an inspiration to all their colleagues! Abertawe Bro-Morgannwg University Health Board (ABM UHB) Lymphoedema Service ABM UHB provides lymphoedema services to all those living in Swansea, Neath, Port Talbot and Bridgend localities. Although the base is at Singleton Hospital, Swansea, the team provides inpatient services to all hospitals; we hold clinics on the Tenovus Mobile Unit in Bridgend, and we work collaboratively with the community, tissue viability and dermatology nurses for those patients less able to travel to a hospital or clinic site. From November 2012 the majority of breast surgery has moved to Neath Port Talbot hospital which forced the team to re-think their pre- and

41 Annex 5 post-operative care for the Lymphoedema Prevention and Rehabilitation Scheme. We have employed two Band 4 Lymphoedema Assistant Practitioners who have been fully trained to provide this level of care, and to date the feedback has been very positive from the patients, and the team have fully integrated this new pathway. In this new venture we have seen our caseload of Breast Cancer patients double since then! Kaja Hopper and Susan Pugh our Band 4 Assistant Practitioners! Complex clinics/ joint working were set up in Neath Port Talbot in Since then 117 patients have been managed collaboratively, 89 are now maintained in compression hosiery and their wounds have healed. Collaborative working not only provides the patients with a seamless, efficient pathway of care, but also supports the sharing of knowledge and education between specialities. As a result of the cost effectiveness of our initial joint clinic we have established this within other areas locally and have successfully run clinics in Pencoed. Primary Care antimicrobial guidelines now include cellulitis guidance for patients with Lymphoedema / Chronic Oedema: Patients with lymphoedema/chronic oedema presenting with cellulitis may require antibiotics for 14 days or longer (this reflects the guidance within the BLS/LSN Cellulitis Document). ALL patients with lymphoedema/chronic oedema and cellulitis should be referred to the Lymphoedema Service. Independent prescribing project will commence 1 st June this is a pilot study where the two independent prescribers will prescribe all garments on FP10 instead of issuing GP recommendation forms. This is aimed at reducing the delay in obtaining garments, ensuring the correct garment are issued and so reduce waste and improve the service for the patients. Tenovus performed an audit of the use of the mobile unit which showed that patient activity and referrals have doubled over the last year, and that the number of non-attendance (UTA/DNA) of patients has significantly reduced since holding clinics in Bridgend. We now hold two clinics a month in the Bridgend locality, which are fully subscribed and a waiting list for appointments is being carefully monitored. We also hold Breast Cancer Lymphoedema Prevention and Rehabilitation sessions on the Tenovus Mobile Unit at Morrisons, Morfa (Swansea) and at Morrisons, Baglan (Port Talbot); and there are plans afoot to hold a session in Bridgend in the near future. As part of one of the Agored Lymphoedema Management modules, a patient was advised to perform daily skin care and was given simple exercises to build thigh muscle strength and improve mobility until multi-layered bandaging (MLLB) could be performed. Below are photos of the patient at his assessment, and the after photo showing the improvement of his skin condition and the dramatic change in limb shape in the two weeks from his assessment until the start of the MLLB! It just goes to show how effective our advice is when patients take it on board the basics of looking after their skin and taking on a more active lifestyle. Before After Continuing professional development is actively encouraged in the team and Jodie has now passed first year of her Master s degree. Melanie is hard at work with her Doctoral Programme, and Cheryl is about to embark on her Doctoral Programme come October 2013! Rebecca is due to do her Casley- Smith MLD training which will be shortly followed

42 Annex 5 by her independent prescriber s course in September 2013! Up and coming events for the ABM UHB Lymphoedema Service: The majority of the team will be running, walking and probably crawling as part of a Health Board initiative to get the staff moving! We are naming ourselves the Lymphomaniacs and hope to all cross the 10 kilometre walk/run/jog in Llanelli on 30 th June. In an effort to promote Lymphoedema Awareness and provide education for our patients, we will be holding a Lymphoedema and Me : a patient information day on 16 th September 2013 at Margam Park, Port Talbot. STOP the PRESS: we have just had formal confirmation that the ABM UHB lymphoedema team have now been adopted by Macmillan Cancer Support! We have also been short listed for the Macmillan Team Award! Go Team! Lymphoedema Service Contact Details Health Board Base Telephone St. Woolos Aneurin Bevan Hospital, Newport Abertawe Bro- Morgannwg UHB Singleton Hospital, Swansea Wrexham Maelor Betsi Cadwaldr Hospital, Wrexham Whitchurch Cardiff & Vale Hospital, Cardiff Dewi Sant Hospital, Cwm Taff Pontypridd Prince Phillip Hywell Dda Hospital, Breast Carmarthenshire Unit, Llanelli Bronglais General Hywell Dda Hospital, Ceredigion Aberystwyth Withybush General Hywell Dda Hospital, Pembrokeshire Haverfordwest Builth Wells Community Powys Hospital, Builth Wells Melanie, Karen and Cheryl can be contacted at Singleton Hospital, Swansea; Hope you enjoyed the read!

43 Annex 5 Issue 1 Summer 2013

44 Annex 6 Lymphoedema Work Programme v1 Final DESIGNED FOR LYMPHOEDEMA OUTLINE WORK PROGRAMME 2013/14 PRIORITY WORK AREA LEAD MILESTONES PROGRESS 1. MAINTAINING THE LYMPHOEDEMA NETWORK Agree Terms of Reference Jane Fitzpatrick, Claire Thomas & August 2013 Sustain quarterly meetings of Network(s) November 2013 good attendance at all meetings Sustain Lymphoedema Clinical Leads Meetings within South and North Wales Meet with North Wales Service for review of National Roles Karen Morgan Cheryl Pike & Jane Fitzpatrick South every month and North three times annually July 2013 Network to review LHB updates to WG every 4 months to inform future development of the work programme 2. SERVICE DEVELOPMENT Tenovus mobile unit Audit activity on the existing Tenovus Mobile unit Launch the new Tenovus mobile unit in October 8 th 2013 Develop an tool to evaluate the new Tenovus mobile unit for patients and professionals Broaden usage on the unit to encompass prevention, rehabilitation and support Jane Fitzpatrick LHB Clinical Leads July, November 2013, March 2014 October 2013 March 2014, reviews being sent as requested

45 Annex 6 groups PRIORITY WORK AREA LEAD MILESTONES PROGRESS Establish dedicated lymphoedema accommodation Support Powys LHB in maintaining dedicated accommodation, Claire Thomas & Jane Fitzpatrick LHB Clinical Leads March 2014 Support Ceredigion in sustaining accommodation Care pathways and outcomes Audit the new integrated care pathway for lymphoedema Develop a cellulitis care pathway for lymphoedema patients Implement Lymphoedema guidance in all antimicrobial /cellulitis policies within Wales Implement the new Obesity and Lymphoedema Policy/pathway Audit treatment outcomes across Wales with reference to changing case complexity Karen Morgan Cheryl Pike LHB Clinical Leads January 2014 September 2014 March 2014 November 2013 November 2013 Lymphoedema Work Programme v1 Final

46 Annex 6 Audit discharge codes amongst all the lymphoedema services in Wales Audit service capacity November 2013 January 2014 Support and develop independent prescribers within each of the lymphoedema services Arrange funding for Lymphoedema specialists to attend the prescribing course Collaborate with TVN Sustain the development of chronic leg clinics in all the LHB and develop a clinic with TVN in ABHB Create a Chronic Leg pathway win collaboration with TVN 3. SUPPORTING SERVICES Sustain breast cancer prevention classes in ABM, HD, BC and support development in C&V, CT and ABHB Karen Morgan Cheryl Pike LHB Clinical Leads Karen Morgan Cheryl Pike LHB Clinical Leads Karen Morgan Cheryl Pike LHB Clinical Leads March 2014 March 2014 March 2014 Provide clinical support, November 2013 Lymphoedema Work Programme v1 Final

47 Annex 6 supervision and ensuring standardisation amongst all the LHB Lymphoedema services LymCalc Database Ensure ongoing updates/maintenance from manufacturer and IT Develop links with NWIS to create minimum data sets for all Wales services Karen Morgan Cheryl Pike LHB Clinical Leads Melanie Lewis & Jane Melanie Fitzpatrick Thomas, Claire Thomas & Jane Fitzpatrick Karen Morgan Cheryl Pike LHB Clinical Leads March 2012 April March December 2013 All services have been given Lymcalc programme and IT equipment. All HB must have Lymcalc installed and working by September 1st 2012 Support the ongoing training needs for lymcalc March 2014 Lymphoedema Compression Garments Development of the National Lymphoedema Formulary Development of the All Wales Lymphoedema Compression garment Contract, Claire Thomas & Jane Fitzpatrick Karen Morgan Cheryl Pike LHB Clinical Leads March 2014 November 2013 Evaluation of existing compression garments with SMTL December 2013 Creation of a business case for all Wales Medicine Management Group October 2013 Lymphoedema Work Programme v1 Final

48 Annex 6 Pilot between lymphoedema services in ABM, CT, BC and community Pharmacy Wales in improving Waste, Harm and Variation in prescribing September EDUCATION AND TRAINING Develop further Agored Lymphoedema Units in:- o Compression garments o Genital Oedema o Head and Neck oedema o Breast oedema o Lymphoedema/Electrother apy o Prevention Lymphoedema Support Clinical leads in providing local HB community Lymphoedema agored unit Develop an abstract to be submitted to the British Lymphology Society Conference 2013 Develop and evaluate a patient Lymphoedema day Karen Morgan Cheryl Pike LHB Clinical Leads December 2013 December 2013 October 2013 September 2013 Lymphoedema Work Programme v1 Final

49 Annex 6 Arrange collaboration with Public Health Wales communication team in the Development of an All Wales Lymphoedema Website September PATIENT SUPPORT, INFORMATION AND EDUCATION o o o o o o o o o o o Update and publish the Lymphoedema patients information booklets in: Upper limb lymphoedema prevention and treatment Lower Limb lymphoedema prevention and treatment head and neck oedema genital oedema exercises Multi layer lymphoedema bandaging MLD massage Scar massage Emotional effects of lymphoedema Simple Lymph drainage Weight Management Karen Morgan Cheryl Pike LHB Clinical Leads March 2014 Promotion of Agored Accreditation of patient qualification March 2014 Lymphoedema Work Programme v1 Final

50 Annex 6 Review and development of lymphoedema support groups in Wales February 2014 REVIEW PAEDIATRIC LYMPHOEDEMA SERVICES Audit existing paediatric cases within Wales Continue to liaise and promote lymphoedema awareness with All Wales paediatric services Karen Morgan Cheryl Pike LHB Clinical Leads December 2013 March 2014 Audit figures of paediatric cases acquiring IPR funding for out of area referral July 2013, over 30 cases registered. Lymphoedema Work Programme v1 Final

51 Annex 1 Programme Management Unit (NHS Wales) Uned Rheoli Rhaglenni (GIG Cymru) All Wales Lymphoedema Network Group Terms of Reference (ToR) Author:, Jane Fitzpatrick, Claire Thomas Owner: All Wales Lymphoedema Network Group Date: 11/06/2013 Version: 0.4 Publication/ Distribution: Revision History Revision date Previous revision date Summary of Changes Changes marked Purpose and Summary of Document: To inform members/partners/stakeholders of progress made against the National Lymphoedema Strategy. Work Plan reference:

52 Programme Management Unit All Wales Lymphoedema Network Group Terms of Reference 1 Background Lymphoedema is a chronic swelling due to lymphatic system failure. It can occur from a congenitally determined lymphatic abnormality or from lymphatic damage by inflammation, infection, trauma, tumour, surgery or radiation. It is chronic and incurable and requires lifelong management. Lymphoedema can affect people of all ages and can occur in any part of the body. It may not occur for sometime after the initial trauma or surgery and patients remain at risk of developing Lymphoedema for the remainder of their lives. Lymphoedema affects individuals physically, psychologically and socially. It has a significant impact on quality of life and the ability to undertake normal activities of daily living. Based on the prevalence of Lymphoedema found in the South West London study of 1.33 per 1,000 there would be an estimate of 4000 Lymphoedema sufferers in Wales. However, looking at the prevalence rates for the last 5 years in the established Welsh clinics shows a rise every year and the average is well over 2 per 1,000. Thus in Wales with a population of 2.9 million at least 6,000 people will have Lymphoedema. Until January 2012, there was wide variation in the organisation and delivery of Lymphoedema services across Wales. Some Health Boards (HBs) offered full Lymphoedema services; others offered services that could only be accessed by cancer patients and then certain areas did not provide any services. Clinics ranged from lone practitioners to small teams; some with administration support others without. Waiting and treatment times varied as well as treatment options. This vast diversity was not a result of patient need and was not patient centred. Unfortunately most people with Lymphoedema went undiagnosed and untreated for long periods of time. This is a consequence of the poor level of knowledge amongst health professionals and the public of this disease. In December 2009, Welsh Government (WG) published the Strategy for Lymphoedema in Wales. The main aims of the Lymphoedema Strategy were; Raise the awareness of Lymphoedema and how simple treatment strategies could improve patient s quality of life Improve health and well being by empowering patients to maximise their own independence and minimise the risks associated with Lymphoedema Integrate, develop, reconfigure and more effectively plan and manage Lymphoedema services throughout Wales in line with the seven HBs and Velindre NHS Trust Improve patient access to Lymphoedema services ensuring that patients receive the right treatment at the right time by the right professional in the right place Provide a comprehensive preventative approach to all patients at risk of developing Lymphoedema thereby reducing the demand on other NHS services Build on the strengths of the current tertiary and secondary care Lymphoedema services integrating services across organisational boundaries incorporating community, primary care and social services Date: 11 June 2013 Version: 0.4 Page: 2 of 8

53 Programme Management Unit All Wales Lymphoedema Network Group Terms of Reference Develop and build on the current available Lymphoedema education enabling health care professionals to easily access local courses to implement in their own practice Clarify the actions needed to implement Lymphoedema services across Wales and improve service delivery In April 2011, WG made available 1 million pounds on a recurring basis to implement the Lymphoedema Strategy and NHS Wales Chief Executives and WG agreed the distribution of these funds across NHS Wales and the principles regarding the allocation of monies. In addition:- Jan Williams, Chief Executive of Cardiff & Vale University Health Board (UHB) was appointed as the lead Chief Executive across Wales and was asked to champion Lymphoedema services. Following the retirement of Jan Williams in April 2012, Fiona Jenkins, Executive Director of Therapies and Health Sciences, Cardiff and Vale UHB has assumed this role on behalf of the NHS Chief Executives., Lead Macmillan Clinical Lymphoedema Specialist, Abertawe Bro Morgannwg University Health Board (UHB), was appointed as Clinical Lead to lead the implementation of the Strategy. Jane Fitzpatrick, Director, Programme Management Unit / Strategic Programmes has been the Programme Director, supporting the implementation of the Lymphoedema Strategy since September Claire Thomas, Programme Manager, Strategic Programme. 2 Objectives The All Wales Lymphoedema Network Group has been established to maintain a strategic oversight of the Strategy for Lymphoedema in Wales Designed for Lymphoedema. The Network Group will be coordinated through a virtual network approach, for NHS Wales and will: Oversee the planning of services for NHS Wales, ensuring the recommendations in the Strategy are implemented locally; Oversee clinical education and training requirements for the network area; Advise on how HBs should respond to strategic developments as they arise; Provide the source of composite advice of HBs to WG when required; Advise on allocation of funding as services change or as funding arrangements change. To provide WG, HB and relevant Boards/ Committees with an overview of activities, responsibilities and performance associated with the delivery of Lymphoedema services to cancer and non cancer patients across the HBs. Review progress, agreeing any necessary actions required to ensure that key milestones and timescales are met. All Lymphoedema patients have access to Lymphoedema services for assessment and management as per the 1million allocation. Date: 11 June 2013 Version: 0.4 Page: 3 of 8

54 Programme Management Unit All Wales Lymphoedema Network Group Terms of Reference Individual HBs (and Velindre NHS Trust) will remain responsible for the delivery of services locally, and Chief Executives will retain accountability for local service delivery. 3 Deliverables i. Recruitment of Lymphoedema staff ii. iii. Education of all Lymphoedema staff Lymphoedema education awareness sessions within HB Establish a Lymphoedema link nurse scheme within community nursing teams Undertake an education and training needs analysis in each LHB Establishment of new Lymphoedema clinics to include suitable and dedicated: Accommodation Equipment Access to correct compression garments Comprehensive IT/Lymcalc process Assessment and standardisation of Lymphoedema treatment needs within the LHB Links with other services tissue viability, dermatology, dietetics Establishment of chronic leg clinics for complex patients iv. Development of evidence based Lymphoedema care pathways including utilising All Wales Referral Criteria All Wales Referral Form All Wales Assessment Forms Cellulitis guidance Integrated care pathway v. Review existing Lymphoedema compression garment protocols Development of links to FP10 prescribing data on compression garments, bandages and stockinet using CASPA incorporation with Community Pharmacy and All Wales National Lymphoedema Formulary vi. vii. viii. Establishment of Lymphoedema prevention sessions For breast cancer patients For other patient groups Establishment of the Lymphoedema data sets for audit Establishment of the Lymphoedema clinical outcome codes Lymcalc data analysis Availability/Establishment of Patient Support Groups, including: Date: 11 June 2013 Version: 0.4 Page: 4 of 8

55 Programme Management Unit All Wales Lymphoedema Network Group Terms of Reference Signposting to EPP Availability of information to patients/carers Availability of dedicated patients information leaflets 4 Scope To provide a forum where actions, timescales and current performance against agreed criteria or performance indicators are monitored and discussed. The Network Group will also develop appropriate additional guidance and quality indicators/metrics, monitor activity and service improvement initiatives. The scope will not include monitoring of other specialities utilising lymphoedema guidance, protocols and polices in their effect and competence levels. 5 Key Activities Establish project team for the repatriation of Staff into Health Boards Standardise Lymphoedema approach Wales Wide Develop care pathways To work closely with colleagues in Community Pharmacy to establish new prescription advice form Develop paediatric lymphoedema policy Establish community Lymphoedema clinics utilising Tenovus mobile unit Develop links with NWIS in implementing lymphoedema minimum data sets Establish support from Public Health Wales communication team for publication of lymphoedema literature and web site 6 Timescales The Velindre NHS Trust Cancer Lymphoedema Service Repatriation of Staff into Health Boards - 1 st October 2013 Standardise Lymphoedema approach Wales Wide - January 2014 Develop care pathways - December 2013 To work closely with colleagues in Community Pharmacy to establish new prescription advice form - September Resources & Membership The Network Group will be made up of the following: Lead Executive Director of Therapies and Health Sciences National Clinical Lead HB Executive and Management Leads Date: 11 June 2013 Version: 0.4 Page: 5 of 8

56 Programme Management Unit All Wales Lymphoedema Network Group Terms of Reference Velindre NHS Trust Clinical and Management Leads Director representative of the Cancer Networks* Patient representative (through representative third sector body) Primary Care representative (HB AMD for Primary Care) Chronic Condition Management/Self Care Representative (WG policy lead and HB lead) * as part of her role within the Cancer Network will inform the group of lymphoedema developments. The Network Group will be supported by a sub-group (the Lymphoedema Clinical Leads), chaired by the National Clinical Lead, made up of the individual HB clinical leads (when in post) and Velindre NHS Trust Clinical Lead, and will undertake operational activities to support implementation of the Network Group s work programme. The Network Group will be administratively supported by the Lymphoedema Service (in conjunction with the Programme Management Unit). The minutes and actions from the meetings will be formally recorded and circulated to members within one month of the meeting. The existing Welsh Association of Lymphoedema Specialists (WALS) will be reconstituted as a Reference Group, chaired by the National Clinical Lead. The Network Group may co-opt additional persons to attend at any time should there be a need for specific knowledge or expertise. These persons will be recorded as being in attendance. Membership of the Network Group will be: Name Role Organisation Fiona Jenkins CHAIR VICE CHAIR Jane Fitzpatrick Claire Thomas Executive Director of Therapies and Health Sciences, National Clinical Lead Director, Programme Management Unit / Strategic Programmes Programme Manager Cardiff & Vale UHB Lymphoedema Services South Wales Cancer Network Programme Management Unit Programme Management Unit Les Hammond Jane Hart Assistant General Manager Cancer Services Lead Nurse Cancer & Palliative Care Abertawe Bro Morgannwg UHB Aneurin Bevan HB Date: 11 June 2013 Version: 0.4 Page: 6 of 8

57 Programme Management Unit All Wales Lymphoedema Network Group Terms of Reference Mike Hague Lead Cancer Services Manager Aneurin Bevan HB Anne-Marie Rowlands Deputy Director of Nursing Betsi Cadwaladr UHB Paula Lawrence Alun Morgan Fiona Wood Deputy Lymphoedema Network Manager Assistant Director of Therapies and Health Sciences Senior Nurse - Primary/Community Resource Team Betsi Cadwaladr UHB Cardiff & Vale UHB Cwm Taf HB Rebecca Luffman Head of Out of Hospital Redesign Cwm Taf HB Vicky Stevenson Audrey Rogers Clinical Physiotherapy Services Lead Assistant Director Therapies and Health Science Hywel Dda HB Hywel Dda HB Helen Annandale Head of Physiotherapy Hywel Dda HB Jason Crowl Lead Locality Nurse Powys Teaching HB Andrea Hague Director of Cancer Services Velindre Cancer Centre Helen Tyler Therapies Service Manager Velindre Cancer Centre Barbara Burbidge Patient Representative Cheryl Pike / Karen Morgan National Education and Research Lymphoedema Specialists Lymphoedema Services 5 members of the Network Group must be present to hold a meeting to include the Chair or Vice Chair. A representative from each Health Board must be in attendance or a suitable representative should attend on their behalf. The Network Group will meet quarterly in the first instance, to be reviewed after one year. The Mid and South Wales and North Wales Networks will meet separately twice a year, and together twice a year. Date: 11 June 2013 Version: 0.4 Page: 7 of 8

58 Programme Management Unit All Wales Lymphoedema Network Group Terms of Reference 8 Dependencies & Constraints Successful delivery is subject to the following: Dependencies: Health Board engagement Tenovus and Macmillan Cancer Support Constraints: Possible lack of funding to undertake the programme of work that is required Timescales for completion of the programme work Accommodation Increase capacity leading to failure in meeting targets 9 Governance Arrangements All Wales Lymphoedema Network Group will be accountable to the Lead Executive Director of Therapies and Health Sciences and WG. The individual HBs (and Velindre NHS Trust) will remain responsible for the delivery of services locally, and Chief Executives will retain accountability for local service delivery. Date: 11 June 2013 Version: 0.4 Page: 8 of 8

59 Annex 2 DESIGNED FOR LYMPHOEDEMA OUTLINE WORK PROGRAMME 2012/13 PRIORITY WORK AREA LEAD MILESTONES PROGRESS 1. Maintaining the Lymphoedema Network Agree Terms of Reference Establish quarterly meetings of Network(s) Establish Lymphoedema Clinical Leads Group Jane Fitzpatrick & March 2012 November 2012 March, June, September, December 2012 for meeting held in November 2012, regular quarterly meeting with clinical leads throughout Wales. Network to review LHB quarterly updates to WG to inform future development of the work programme Jane Fitzpatrick March, June, September, December 2012 for Service Development Monitor TENOVUS Mobile unit usage Develop patients user satisfaction surveys with Cardiff University LHB Clinical Leads May The findings of the Satisfaction surveys were presented at the BLS National conference. Develop practitioner user satisfaction surveys with Cardiff University July 2012 In addition, the service won a Third Sector award for the utilisation of a chemotherapy unit for lymphoedema. Support TENOVUS with the Business case for a dedicated. Business case developed and funding for a second Tenovus Mobile unit secured. Designed for Lymphoedema Work Programme Page 1 Progress Report August 2013 v1 Final

60 Annex 2 PRIORITY WORK AREA LEAD MILESTONES PROGRESS Lymphoedema mobile unit Establish Additional Clinics New clinics to be established in all LHB leads March 2012 LHBs Care Pathways and Treatment Outcomes Develop and audit the new integrated care pathway for lymphoedema & Lymphoedema Clinical Leads March Integrated care pathway audit tool has been developed and an audit will be undertaken in This milestone has slipped as a result of delays in the implementation of the Lymcalc system. Support the development of chronic leg clinics in all the LHB Develop the cellulitis care pathway Develop the breast cancer prevention classes throughout Wales September 2012 December 2012 July 2012 in C&V, CT, Powys, ABM, HD and BC. Delays in ABHB will occur in Autumn Work in this area is still ongoing. Pathway accepted in AMB but needs to be implemented in other HB s. Meeting arranged with Interim director of Microbiology for Public Health Wales in September Prevention sessions now available throughout Wales, In the South east combined with Breast Cancer Care. Develop links between lymphoedema services and obesity links Audit the treatment outcomes and establish numbers of patients not following the ICP December 2012 December 2012 Development of Obesity pathway completed and will be implemented in work programmes., however further work is required in as further data collection is necessary.. Designed for Lymphoedema Work Programme Page 2 Progress Report August 2013 v1 Final

61 Annex 2 PRIORITY WORK AREA LEAD MILESTONES PROGRESS Audit the discharge codes and establish numbers being transferred back to primary care December Supporting Services LymCalc Database Purchase licences for each LHB Work with IT in each of the HB to ensure a safe and smooth transition in downloading information and upgrading existing Lymcalc & Jane Fitzpatrick March 2012 April 2012, however further training needed for ensuring ongoing updates. Dates arranged for January Ensure ongoing updates/maintenance arrangements in place October 2012 in certain HBs, however further education in the South East Wales HBs is required. Date arranged for further training. Use LymCalc to inform development of consistent data sets for use locally and nationally May/ August 2012 Develop Lymcalc training for all Lymphoedema staff Purchase of Compression Garments Additional compression garments purchased for 2011/12 and C&V Procurement March 2012 Organisations to undertake, November 2012 Designed for Lymphoedema Work Programme Page 3 Progress Report August 2013 v1 Final

62 Annex 2 PRIORITY WORK AREA LEAD MILESTONES PROGRESS baseline assessment of spend for 2010/11 plus LHB Leads and One Value Wales project Further meetings with One Value Wales project for central purchasing of compression garmentsestablishing an All Wales Contract & Jane Fitzpatrick Ongoing All Wales Lymphoedema Procurement Group established. All Wales compression garment contracts tender process live from October further work highlighted for work programme with All Wales Medicine Management group. Establish links with all pharmacy managers within WG and LHB reviewing spend on FP10 on the CASPA system. & Jane Fitzpatrick Ongoing Identify true costing of garments being prescribed including postage and package fees plus distributer costs & Jane Fitzpatrick Ongoing 4. Education and Training All education and training packages to be accredited by Agored Cymru All lymphoedema staff to complete Agored Cymru assessment unit Clinical lead and practitioners to LHB Clinical leads March 2013 August 2012 Ongoing 6 units completed work underway on others. Designed for Lymphoedema Work Programme Page 4 Progress Report August 2013 v1 Final

63 Annex 2 PRIORITY WORK AREA LEAD MILESTONES PROGRESS receive lymphoedema update course Clinical leads to provide local awareness training March 2013 and included in work programme Present Welsh Lymphoedema Strategy implementation update at British Lymphology Society Conference 2012 and Jane Fitzpatrick October 2012 Support Clinical leads to complete abstracts for BLS conference July posters presented as well as oral presentations Develop an annual All Wales Sharing Good Practice Day and Jane Fitzpatrick March 2013 Development of an All Wales Lymphoedema Website 5. Patient Education Development of 12 booklets for conditions including : - Upper limb lymphoedema prevention and treatment - Lower Limb lymphoedema prevention and treatment - head and neck oedema and Jane Fitzpatrick Lymphoedema Clinical Leads Group March 2013 March 2013 Website intranet developed and available via HOWIS Patient web site under development and will include relevant waiting times corresponding to Health Board area. All Booklets completed and written will be published in the Autumn Designed for Lymphoedema Work Programme Page 5 Progress Report August 2013 v1 Final

64 Annex 2 PRIORITY WORK AREA LEAD MILESTONES PROGRESS - genital oedema - exercises - multi layer lymphoedema bandaging - MLD massage - Scar massage - Emotional effects of lymphoedema Accreditation of patient qualifications and Agored Cymru March 2012 Review of lymphoedema support groups in Wales and Clinical leads January 2013 Patient information boards available within all services specific supports groups are establish but ongoing work as to patients benefit needs to be ascertained. Development of 3 patients support days North, South west and South east and Clinical leads March 2013 Work ongoing- first patient conference commences on September 16 th Development of a Research and Education Post Dedicated 1 WTE in education and research for Wales Promote research and audit in all Lymphoedema services and Jane Fitzpatrick April 2012 All completed, post started November Journal club and patient s satisfaction survey completed. Designed for Lymphoedema Work Programme Page 6 Progress Report August 2013 v1 Final

65 Annex 2 PRIORITY WORK AREA LEAD MILESTONES PROGRESS Become the principal investigator in trials within Lymphoedema services New RCT commencing in September Review Paediatric Lymphoedema services Establish numbers of paediatric cases on case loads and Jane Fitzpatrick March Develop links with paediatric specialist services linked with Community Nurses all Wales/ meeting with WG Paediatric Officials Discover current welsh paediatrics case loads in other hospitals. Business case for paediatric lymphoedema specialist practitioner Work ongoing need further information prior to business case being developed Designed for Lymphoedema Work Programme Page 7 Progress Report August 2013 v1 Final

66 Annex 3 Welsh Government Lymphoedema Strategy Objectives Key Actions Required Outcomes Benefits Realised Improved Access Planning and delivery groups must ensure that all patients have access to lymphoedema services for assessment and management Better Services Develop Evidence based lymphoedema care pathways and implement across all health care settings to manage lymphoedema and the obstacles to recovery Review and standardised patient information leaflets on preventative strategies and self management Implement education and training packages for all health care professionals to support better management of lymphoedema and reduce associated risks Develop evidence based cellulitis care pathways and implemented use across all health care settings All breast cancer patients must have access to lymphoedema prevention and education schemes to reduce their risk of developing lymphoedema. All lymphoedema services in conjunction with physiotherapy and dietetics will offer an active management programme for obese patients. Assessment tools and referral forms must be centrally developed and implemented for use across all lymphoedema services in Wales Develop and implement lymphoedema referral protocols and criteria Ongoing All Health Boards have dedicated Lymphoedema services providing equitable care for all sufferers regardless of lymphoedema cause ending the previous postcode lottery. Care pathways have been created in delivering standardised lymphoedema referral, assessment and care across Wales. Patient regardless of their location in Wales can access the same good quality care All Patient leaflets have been developed and written and will be published Autumn units have been accredited by Agored Cymru with a further 6 units to be written by All Lymphoedema education is now standardised in Wales with learners accessing work based qualifications if they so desire. Cellulitis care pathway has been developed and accepted in some health Boards but needs further work in achieving at an all Wales Level. Meetings arranged with Microbiology and further support needed form Welsh Government. All breast cancer patients undergoing axillary intervention are now offered routine lymphoedema prevention advice and rehabilitation throughout Wales. The Lymphoedema Obesity Policy and procedure document has been developed and will be formally launched in November Following launch of policy further collaboration with dietetics and physiotherapy services within each of the Health Boards will occur. All referral and assessment tools are standardised throughout Wales. All referral protocols and criteria are standardised throughout Wales. Welsh Government Lymphoedema Strategy Objectives August 2013 Version v1 Final Page 1

67 Annex 3 supported by appropriate training across all health care settings to aid early assessment and diagnosis of lymphoedema An Audit or review must be carried out to evaluate services and examples of good practice dissemination Assess and review the ongoing needs of lymphoedema patients in conjunction with chronic condition management Establish community lymphoedema sessions for lesser complex patients to be delivered in community hospitals /GP surgeries Individual patient care plans must include a category for self management, for access to weight reduction programmes and signposting patients to Expert Patient Programmes Review appropriate information and support groups available for all lymphoedema/ chronic oedema enabling patient signposting Implement unpaid carers to be actively involved in the joint care planning to help them look after the patient and ensure they are working safely to prevent stress or injury to themselves Implement lymphoedema education and training packages, aimed at all levels of staff to support better management of lymphoedema / chronic oedema and reduce associated risks like cellulitis An education and training needs analysis must be undertaken to determine the training required in each of the An all Wales service evaluation was completed in January This highlighted the excellent work that was occurring through Wales and included patients statements regarding the care received. Further work planned for impact of new services in Focus Groups to be completed by December 2013 All Wales service review and further research being tasked. Patient integrated pathway developed and accessed across Wales. New Tenovus Mobile Unit offering community care throughout Wales. Chronic Leg clinics occurring in community venues and GO surgeries across Wales. All care plans developed and accessed across Wales. Patients self managing Agored unit available. All Health Board Lymphoedema services have patient information boards with relevant information on for patients. Patient lymphoedema Walking groups and Choirs have been established in certain areas of Wales for Lymphoedema patients with good researched benefits. Carers advice sheets have been developed and are available throughout Wales 12 Agored Units are available and a further 6 will be developed throughout A lymphoedema education needs analysis was completed in Ongoing training needs to highlighted with the new National education and Research Lymphoedema specialist post Welsh Government Lymphoedema Strategy Objectives August 2013 Version v1 Final Page 2

68 Annex 3 HB enabling the implementation of the proposals in this report. Carry out an audit of lymphoedema patients gaining access to assessment, treatment, cellulitis, and prevention schemes. Carry out an audit of all lymphoedema referrals and documentation. Implement lymphoedema data sets that can be utilised throughout Wales. All lymphoedema services providing care must complete data sets to be analysed through the LymCalc computer programme. Data must be reviewed and monitored against the Diagnostic and Therapy waiting time targets Report annually on levels of lymphoedema clinical outcome codes and make recommendations based on audit findings to further improve lymphoedema services Review and implement lymphoedema compression garment protocols and improve central purchasing. Ongoing All patients in Wales with Lymphoedema can access assessment and treatment. Issues still exist with paediatric cases in Wales but development work is underway All referral information is audited within the health Boards and statistics are reported on a monthly basis to the National Posts All services in Wales have access to the Lymcalc programme. Teething problems are occurring with different servers and meetings are planned with NWIS in developing minimum data sets. All Lymphoedema services are meeting the therapy time waiting targets. In Fact all services are meeting the targets of 18 weeks. Outcome codes are completed and reported on a monthly basis. The services which are long established have increased capacity but lesser capacity where as the newer services are seeing less but complexity is sever. Task and finish and implementation groups for the All Wales compression Garment contract and Formulary are well under way. The contract will be out to tender in September 2013 with implementation of the contract and formulary in October 2014 Welsh Government Lymphoedema Strategy Objectives August 2013 Version v1 Final Page 3

69 Annex 4 Quality Domain Patient Views Lymphoedema Service Indicator All lymphoedema services throughout Wales have user/support groups available on at least a quarterly basis Information and signposting to Healthy Living Schemes, Expert Patient Programmes should be available in waiting room in lymphoedema clinics Linkage to Health Care Standards 1, 2, 6, 7, 10 12, 29, 31 Outcome for Patients Patients with Lymphoedema become Expert Patients able to manage their chronic condition, and be aware of community support services to further enhance their independence Means of Measurement Evidence of the establishment of User/support groups and frequency of meetings. Evidence of availability of information and signposting in lymphoedema clinics to Special Patient Programmes. Outcomes/ Benefits Realised by July 2013 Lymphoedema Support groups occur in Swansea/ Neath Port Talbot, South East Wales and North Wales. Further work is needed in promoting support group conception in other areas. Patient Information boards are available in all services giving patients relevant access to leaflets and information. An All Wales Lymphoedema Newsletter has just been developed and has been disseminated August 2013 Agored patients living with lymphoedema unit is available for all patients to access throughout Wales Patient communication and choice Patients and carers engage in joint planning of their treatment. Patients can access the most suitable location where they can gain treatment 1, 2, 5, 6, 7,12,15,30, 31 Empowered to manage their condition on a daily basis An option to access the most suitable lymphoedema treatment centre Audited Networked or All Wales Patients Satisfaction Questionnaires South Wales patient s day being held in September All patients are involved in their care planning and developing skills in self managing lymphoedema. All Wales satisfaction survey completed in November New research study commencing this summer discovering patients Quality Indicators for Lymphoedema v1 Final

70 Annex 4 within their area. perceptions of attending lymphoedema services. Service Delivery/Timelin ess Clinical Competence Agreed waiting times for palliative (2 weeks), urgent (4 weeks) and routine referrals (26 weeks). Evidenced based effective efficient management of lymphoedema available throughout Wales. Lymphoedema Therapists should be fully lymphoedema trained and attend lymphoedema updates every 2 years to maintain competency. 2, 3, 10, 11, 12, 13, 22, 23, 28, 30 2, 4, 5, 8, 11, 12, 14, 15, 19, 26, 27, 28, 29 Reduction in waiting times for first assessment at specialised Lymphoedema clinic Patients are offered the best evidence based treatment within the resources of the service Patients are treated by therapists who are fully trained in lymphoedema Waiting times recorded throughout Wales and breaches reported All Wales audit of treatment protocols and availability Lymphoedema Therapists competency skills are recorded on an annual basis Lymphoedema services now available throughout Wales additionally have access to the Tenovus Mobile Unit for local delivery of lymphoedema services. All waiting times are recorded in Wales. All services have met the 26 weeks target and for this has been reduced to 18 weeks. An audit has commenced in July 2013 for 6 months recording waiting times for palliative and argents as well as routine patients. A significant amount of work has been completed in ensuring effective management of lymphoedema patients. Protocols, Procedures and Policy document have now been developed in all aspects of care ensuring standardisation across Wales in all treatments modalities. Education Needs document and competency now live and updated monthly. Quality Indicators for Lymphoedema v1 Final

71 Annex 4 Effective Treatment and Care Compliance with the British Lymphology Society international consensus on management of cellulitis 2, 3, 11,12, 13, 16, 27, 29, 31 Reduction in the frequency of episodes of cellulitis for lymphoedema patients Audit of Patients admitted to acute units with cellulitis. Cellulitis management needs further work to ensure standardisation across Wales. ABM UHB and BCHB have Lymphoedema/ chronic oedema guidelines for lymphoedema included within their antimicrobial policies this need unifying and dissemination across Wales. Meetings are ongoing with All Wales Medicine Management Group and meeting planed with Director of Microbiology for Public Health in September Quality Indicators for Lymphoedema v1 Final

72 Annex 5 Lymphoedema Wales Issue 1 Summer 2013 A warm welcome to the first edition of Lymphoedema Wales, your National Lymphoedema Newsletter! Included are stories, news and reports of service developments from each of the Lymphoedema Services across Wales. This will give you an idea of the wonderful work that is taking place near to you. Telephone numbers for all the services can be found at the back of the newsletter. If you have any queries please make contact with your local lymphoedema service. Thank you to all the lymphoedema staff for submitting to this first Newsletter. We hope you enjoy the write ups and share the work that is being achieved. With kind regards, Cheryl and Karen Foreword Lymphoedema services in Wales have dramatically changed over the last few years and this is due to the hard work of key individuals, most especially Eilish Lund, who has now retired blissfully in France knowing that she has laid the foundation for patients to access lymphoedema services throughout Wales. We have been fortunate with support from Welsh Government and the Programme Management Unit in taking lymphoedema into a strategic direction. I am delighted with this the first newsletter - Lymphoedema Wales - which showcases what we have achieved in such a short space of time. Congratulations and well done to all those involved, but remember, this is just the beginning! Kind regards, MBE National Clinical Lead Lymphoedema Welsh Government All Wales Lymphoedema Network Group The All Wales Lymphoedema Network Group was set up in 2011 following the 1 million investiture into implementing the Welsh Government Lymphoedema Strategy (2009). This Group is a led by Fiona Jenkins (Executive Director of Therapies and Health Sciences, Cardiff and Vale UHB), Chief Executive of Lymphoedema Services on behalf of the NHS Chief Executives;, National Lymphoedema Clinical Lead who is directing the implementation of the Strategy, Jane Fitzpatrick, Programme Director, Programme Management Unit / Strategic Programmes, and Claire Thomas, Programme Manager, Strategic Programmes and Health Board Network Leads. The All Wales Lymphoedema Network Group has been established to maintain a strategic oversight of the Strategy for Lymphoedema in Wales Designed for Lymphoedema and will: Oversee the planning of services for NHS Wales, ensuring the recommendations in the Strategy are implemented locally; Oversee clinical education and training requirements for the network area; Advise on how Health Boards should respond to strategic developments as they arise; Provide the source of composite advice of Health Boards to Welsh Government when required; Advise on allocation of funding as services change or as funding arrangements change; Provide Welsh Government, Health Boards and relevant Boards/ Committees with an overview of activities, responsibilities and performances associated with the delivery of Lymphoedema services to cancer and non cancer patients across the Health Boards; Review progress, agreeing any necessary actions required to ensure that key milestones and timescales are met; All Lymphoedema patients have access to Lymphoedema services for assessment and management as per the 1million allocation. Individual Health Boards (and Velindre NHS Trust) will remain responsible for the delivery of services locally, and Chief Executives will retain accountability for local service delivery.

73 Annex 5 Congratulations to Melanie! Fiona Jenkins, Chair of the All Wales Lymphoedema Network Group, would like to inform all colleagues of how proud we all are of (Lewis), who has been awarded an MBE in the recent national awards. This is testimony to Mel's leadership and passion for improving services for Lymphoedema which all of Wales has benefitted from, and now has the much deleveraged national recognition...well done Mel! National Lymphoedema Roundup With the funding from Welsh Government in 2011, lymphoedema services have been set up throughout Wales to ensure equity of access and care for all people with lymphoedema/chronic oedema, regardless of the cause. (nee Lewis), the National Clinical Lymphoedema Lead for Wales has worked tirelessly with the various Health Boards in setting up new lymphoedema services and ensuring established services were able to provide the required level of care according to the All Wales Lymphoedema Strategy published in In an effort to support the aims and objectives of the Strategy, a National Lymphoedema Education and Research Specialist role was created with Karen Morgan and Cheryl Pike being appointed a job share. Karen, Melanie and Cheryl A breakdown of the work that has taken place over the last six months is summarised below: Education One of the first roles was to develop education courses that would be accredited and would recognise the level of skill and knowledge that participants would be achieving. Newly accredited modules for the management of lymphoedema have been, and continue to be created in collaboration with Agored Cymru. The modules that have run thus far include Skin Care, Simple Lymph Drainage, Key Worker Skills for the Management of Chronic Oedema, Lower Limb Multi-Layered Bandaging (MLLB), Upper Limb MLLB and Exercise in Lymphoedema. To date 27 lymphoedema staff have successfully completed the Simple Lymph Drainage (SLD) module and 14 lymphoedema assistant staff have completed the Skin Care module; all staff have passed their assessment and are awaiting their certificates of accreditation. Future courses being planned include Casley-Smith Manual Lymphatic Drainage (MLD), Update in MLD, Specialist Skills for Head & Neck, Breast, Gynae and Obesity related Lymphoedema; Compression Garments, Advanced Assessment Skills and an exciting opportunity for patients and carers to do a module called Living with Lymphoedema. All Wales Lymphoedema Service Survey In October and November 2012, an All Wales Lymphoedema Service Survey was undertaken and the results were presented at the Sharing Good Practice study day in Bridgend in April This survey was a trial for future audit purposes but it did demonstrate the excellent work the various services are doing. Of the 591 forms that were returned for evaluation, 24 forms had to be excluded as the incorrect forms had been issued; thus 567 forms were audited. Some of the results from the audit include: 82% of people did not have difficulty accessing their lymphoedema service 96% answered that lymphoedema had been explained to them 60% of people knew what the risk factors were to developing lymphoedema 96% stated that the management of lymphoedema was explained to them

74 Annex 5 83% of people felt it was very easy to follow the advice given by their therapist; 10% felt it was easy Have you received any of the following? Yes No N/A 1. Skin care advice 86% 3% 1% 2. Exercise, movement and activity advice 3. Simple Lymph Drainage (SLD) (self-massage) 81% 5% 3% 64% 16% 6% 4. Garment care 74% 5% 7% 5. Weight management advice 59% 16% 12% Pop-Ups 14 informative pop-ups have been printed and distributed to all lymphoedema services across Wales as an educational and promotional tool. Plans to audit the effectiveness of these pop-ups are being discussed and each service will have the freedom to decide on the format of the audit they would like to perform. We look forward to finding out what impact these pop-ups will have on patients and staff! Standardisation of Lymphoedema Services As part of ensuring all clinics provide equitable services, policies and procedures are being drafted for the various skills and equipment currently being used within the services. These include: Measuring Limb Volumes to Determine Lymphoedema Outcome Lymphoedema Vascular Assessment Policy (Toe Brachial Pressure Index / TBPI) Lymphassist Protocol for Lymphoedema THOR Laser Protocol for Lymphoedema Deep Oscillation Protocol for Lymphoedema Management Strategy for Lymphoedema Patients with a Body Mass Index (BMI) equal or greater than 30 kg/m² Lymphoedema bandaging and lymphoedema care plans have been designed to aid staff and carers in assisting patients manage their lymphoedema. We are awaiting final approval from the Lymphoedema National Network prior to dissemination across the country. Lymphoedema management leaflets are in the final stages of redrafting prior to approval by Public Health Wales for printing. As part of their National role, Melanie, Karen and Cheryl provide clinical support and supervision to all services. Those services having had this support have reported positive feedback and all have requested future dates for these sessions. Independent Prescribing Currently there are 3 independent prescribers in Wales which has contributed to a comprehensive and timely treatment for patients. As we all know the current system in prescribing garments utilising General Practitioners and Pharmacies is proving challenging. To rectify this we have had a series of meetings with the Welsh Medicines Management Group and the Community Pharmacy Wales Group, looking at improving the system throughput. A pilot has commenced in ABM UHB where 2 independent nurse prescribers are issuing prescriptions for garments, antibiotics and bandages direct for patients to take to their pharmacy. This is taking the GP practice out of the system. This pilot is in its infancy; however definite improvements can already be seen. The plan for the near future is that each health board lymphoedema service will train staff so that each service will have an independent nurse prescriber within their team. Paediatric Services An audit of paediatric lymphoedema patients is underway. We currently have in excess of 30 children with lymphoedema in Wales. A new protocol for management is being created with support from the Community Children s Nurses.

75 Annex 5 Meetings and presentations have occurred with the All Wales Community Children s Nurses and Welsh Government officials for paediatrics, and further work is underway. The long term goal is a dedicated Lymphoedema Paediatric Specialist. Welsh Compression Formulary We have been working extremely closely with shared procurement services and SMTL in creating a tender document as well as an evaluation which is robust and patient focused. In the forthcoming months the tender process will commence which will enable us to formulate the National Lymphoedema Formulary. This will ensure that patients are having the best products and the NHS will be purchasing at the best price. Round-Up from Services across Wales Aneurin Bevan Health Board The lymphoedema service is based at St Woolos Hospital, Newport which means patients suffering from lymphoedema/chronic oedema can now have access to expert care and a high quality service. A spokesperson said that, Aneurin Bevan Health Board have established and will improve dedicated lymphoedema services in their localities to ensure patients receive the right treatment at the right time by the right professional in the right place. Wellbeing Day Aneurin Bevan Lymphoedema Service was established in the autumn of 2011 and provides treatment for all types of lymphoedema. They recently held a Health and Wellbeing Day for patients attending the Lymphoedema Clinic at St Woolos Hospital, Newport. Sister Kim Wyness said The patients really enjoyed the day; we invited 25 people to the unit and we offered them massage treatments, facials, skincare workshops and relaxation techniques throughout the day. We also had speakers at the event talking about how to reduce stress, tips for a good night s sleep and how to reduce the risk of infection. During the day, ten patients signed up to a new walking group which started in April; although the nursing staff are already walking three times a week at lunchtime. The group is called `Walk With Us` and has been funded by the cancer charity, Tenovus. Staff from the clinic also walked across the Severn Bridge in their onesies! in May to raise funds for the St David's Foundation. Betsi Cadwaladr (North Wales) Lymphoedema Service The last year has seen interesting changes with the retirement of Eilish Lund (happily living in France without a care in the world!) and Wrexham Clinic moving into their new accommodation. We have welcomed new members of staff and really consolidated the existing North Wales team, meeting regularly to share ideas, case presentations from staff members and peer reviewing, taking the service for North Wales ever forward. The pace of service improvement has been rapid and we have as a group, been able to take advantage of 3M training - a subsequent audit of the efficacy of this new bandaging system is being done - Kinesio Taping and MLD updating. All of this activity adds to our existing practice and provides extra management options for the patients sometimes combining the more established management options with exciting new ones!

76 Annex 5 All clinics are now equipped with a Deep Oscillation Hivamat and there are 3 THOR lasers circulating within North Wales, thanks to some very generous donations of money. These pieces of equipment are being tested to the maximum to investigate the most effective treatment protocols for our patients. There has been exciting advancement of the existing weight management clinic in Wrexham with input from Dr. Richard Corney, Consultant Psychologist, which is being audited to assess its strengths and evaluate how best to move this very important aspect of Lymphoedema management forward. In the future - hopefully not too far away now - two of the clinics currently in Glan Clwyd and St. David s Hospice, Llandudno, will move to new accommodation in order that services can be truly multidisciplinary and work with other Allied Health Professionals such as Physiotherapy, Tissue Viability, District Nursing, Occupational Therapy and Podiatry. This collaborative working is harnessing the expertise of all these services to achieve greatest benefit for each of the services and maximises patient management, because as we all know, Lymphoedema rarely comes alone. Satellite clinics for those in rural areas have been commenced and there is now access for Anglesey patients to be seen at Cefni; and for those from Dolgellau, a satellite clinic is held at Allt Wen. Looking to the future with a service moving from St. David s Hospice, Llandudno, there has been a satellite clinic established at Llandudno General Hospital every Friday morning 9am-12pm, so that patients East of Bangor up to Llandudno and down to Pentrefoelas only need travel as far as Llandudno; keeping travelling time to under 30 minutes to a clinic. With so much that has happened in a year it is difficult to do everything we have done justice, and we as a team are looking forward to the next twelve months to see what it will bring. Velindre NHS Trust Work for the proposed repatriation of the Velindre Cancer Centre Lymphoedema Service to the Cardiff and Vale, Aneurin Bevan and Cwm Taf Health Boards is ongoing. The new proposed date for the repatriation is 1 st October In the interim new cancer related lymphoedema clinics have been under development through collaboration with the various health boards. A qualified staff clinic based in Whitchurch Hospital for Cardiff and Vale patients commenced in April 2013; and qualified and support worker clinics in Dewi Sant Hospital for Cwm Taf patients will commence on 21 st May Following a service review audit that was completed in February 2013, alterations to service delivery have been implemented to ensure that standards of care are enhanced and waiting times are reduced. These have included dedicated new patient clinics both in one to one and group format. The new patient groups will take place on the Tenovus Mobile Unit and an audit of the effectiveness of new patient assessment, and comparison of group versus individual assessment is about to commence. It is hoped that this work will ensure that patients are seen sooner for their initial assessment and that the service being delivered is as effective as possible. A further audit that has been completed recently is regarding the information patients know about lymphoedema following treatment for breast cancer. This audit was completed to support the collaborative work being undertaken with Cwm Taf, Cardiff and Vale and Aneurin Bevan Health Boards and Breast Cancer Care for the development of Lymphoedema Prevention for Breast Cancer patients. The results demonstrated that 48% patients felt they were informed of breast cancer related lymphoedema pre-operatively and 61% felt they were given information post-operatively. Although we know breast care nurses provide all patients with lymphoedema advice, this evidence suggests that patients are not recalling or remembering this information and supports the

77 Annex 5 need for development of further lymphoedema prevention intervention. Cardiff & Vale University Health Board A ST DAVIDS DAY TO REMEMBER!! Friday March 1st, 2013 saw the launch of the new Lymphoedema Service in Cardiff & Vale University Health Board (UHB). The NEW clinic has been established to provide advice, help and support for people with lymphoedema living within Cardiff and the Vale of Glamorgan; and it is proving a success. The clinic has already helped hundreds of patients and has recently enjoyed an official opening ceremony. Fiona Jenkins, the Director of Therapies for Cardiff and Vale University Health Board, said: The new therapist led Lymphoedema Service is based in a newly refurbished department at Whitchurch Hospital and has been set up in line with the Welsh Government s Lymphoedema Strategy. There are already more than 250 people making regular use of the service which is helping to improve their quality of life in a number of ways and I would like to thank everyone involved in setting up the service for a job well done. The service is aimed at non-cancer related lymphoedema patients and as a prevention service for cancer patients whose treatment may increase their risk of developing lymphoedema. Treatments that are offered consist of a combination of skin care advice, movement and exercise information, compression (garments and multi-layer lymphoedema bandaging) and lymphatic drainage techniques. Tanya Ball, the clinical lead for the lymphoedema service, said: The new service has been very well received by patients. It is making a real difference to their care and helping to manage the condition. Service users Jacqueline Rattray and Nadir Robani were invited to the launch, both expressing their sincere gratitude for this new service and the benefits they have gained from receiving treatment at the Whitchurch Clinic. Jacqueline and Nadir officially open the clinic MAKING A DIFFERENCE Since January 2012 the new lymphoedema service at Cardiff & Vale UHB have been working hard to improve the lives of those people in the Cardiff & Vale area who are living with Lymphoedema. As we know, current statistics report that lymphoedema affects around 6,000 people in Wales and has an emotional, as well as a physical, impact on the individuals living with this chronic condition. Following the initial set up of the service which involved visiting people at their own homes (and moving offices three times!) the team of five have been based at their new clinic in Whitchurch Hospital since September 2012 and continue to make a difference to patients lives. Many patients treated at the clinic have been able to make lifestyle changes with the advice and support provided by all levels of staff at the clinic. One patient felt that the new service has changed his life, and receiving a letter for treatment was like Christmas day! Since undergoing a course of multi layer lymphoedema bandaging this gentleman is now self managing his condition with skin care, attending the gym and use of compression garments. The clinic works in collaboration with other services within the UHB to ensure the patient receives appropriate holistic care that is required to manage this chronic condition.

78 Annex 5 The treatment has made such a difference to his life that following 8 years of being unemployed he stopped receiving benefits and has been phased back into full time employment. Another success story of a young lady, referred to the clinic by her tissue viability nurse, has also successfully undergone lifestyle changes. She now has a more positive outlook on her everyday life. Personal hygiene needs were addressed along with weight management issues. Together with support from the community resource team and treatment which included a course of bilateral below knee lymphoedema bandaging she has lost five stone in five months. This weight loss was aided by the loss of 8 litres of fluid from each leg during her intensive treatment phase. With assistance from her father she has continued her self-management regime and weight loss plan with the hope of losing more weight. Pre- and post-bandaging (MLLB) Of the more than 250 patients that have been seen at the Whitchurch Clinic, these are only two examples of the impact this new service is having on peoples lives. The team as a whole continue to strive to spread the Lymphoedema word and improve patient s lives. Before After Cwm Taf Health Board Cwm Taf Health Board Lymphoedema Service was successfully launched in November 2012 with the Health Board s Deputy Chair opening the service. Since commencing the service Cwm Taf Lymphoedema team now has 140 patients on its caseload. Karen Wingfield, the clinical lead for the lymphoedema service said, Since we started we have moved our clinics in the north of the Health Board from the old St Tydfil s Hospital to the purpose built Keir Hardie Health Park, Merthyr Tydfil, where the clinic rooms are spacious and very suited to seeing our patients. Clinics are held across two sites: Pontypridd and Merthyr Tydfil. Various education and training events have taken place including a training day for Practice Nurses and District Nurses in March and May Presentations to the Cancer Multi-Disciplinary Teams, GP practices, Continuing Professional Development Forums and podiatry services have also been held. Forthcoming talks will be for the community podiatry teams, practice manager forums and the District Nurse team leader meetings. Exciting new service developments have been commenced including: Joint complex leg clinics are being held with Tissue Viability Nurses (TVNs) every 4 months. In between these clinics the TVNs and podiatrists attend clinics if there is need for a joint treatment plan with each of these specialist services. Diane Jehu, Lymphoedema Nurses, is leading on educational sessions for the Prevention of Lymphoedema following Breast Cancer treatment which commences in May 2013, and will be held alternatively between the Pontypridd base and Merthyr Tydfil clinics.

79 Annex 5 Wendy Dury, Lymphoedema Assistant, is hosting classes to teach Simple Lymph Drainage which is an important self-massage to aid in the management of lymphoedema. Karen Wingfield says A big thank you to all colleagues, patients and the public for your ongoing support, patience and tolerance whilst we have been setting up our services! Hywel Dda Health Board Hywel Dda Lymphoedema Service provides a service to the entire population of Hywel Dda in whatever environment suits an individual s needs at that point in time - the service has the flexibility to adapt and treat a patient in any environment from inpatients, outpatients, satellite clinics, community, multi-disciplinary joint visits or clinics. The overall clinical objective of all services is to prevent hospital admissions by promoting and facilitating self management, patient education, and Health Care Professional awareness and education. Treatment interventions are directed towards ensuring maximal independence and selfmanagement. Each of the 3 services provide their service to meet the needs of that population: - for example, the Ceredigion Lymphoedema Service commenced officially in September 2011 with funding via the Welsh Assembly Governemnt; in line with this, the service has a strong community link and aims to provide a service as close to the patient s home as necessary. There are currently 1195 patients across the Health Board receiving active treatment, and during the period April 2012 to March 2013, 550 new patients were seen. From the data on lymcalc we did a snapshot of people s Body Mass Index (BMI) levels and below is a table showing average percentage number of patients on the active caseload who have a BMI of over 30: Patient Obesity Levels Region Percentage of BMI >30 Carmarthenshire 40% Pembrokeshire 62% Ceredigion 51% Hywel Dda Average 51% We are currently treating a lady with a BMI of 97which has proven extremely challenging! However, through bandaging her right leg twice a week over 3 weeks, we have been able to reduce her limb volume from 38,363 litres to 19,460 litres - this equates to a loss of fluid of 3 stone in weight! There were obviously immediate positive implications with this excellent outcome in that she had better movement of the leg, her activities of daily living were easier to perform, and the goal of treatment is to enable the lady to sit in her wheelchair. Once this has leg reduction has been stabilised, we plan to bandage her left leg. Service developments for the Health Board include: Prevention and Support Groups: the new Tenovus Mobile Unit will host the Lymphoedema Prevention across the 3 counties in the near future. We also envisage that hydrotherapy courses and Tenovus Walk With Us groups will be established and introduced across the 3 counties. Welsh translation recording for Simple Lymph Drainage: the lymphoedema assistant working in Ceredigion is to undertake this task because the Ceredigion locality has a high population of welsh speakers, and she feels strongly that it is very important to develop a welsh language description of SLD for these patients. This will be done in a professional recording studio and CDs will be leant to our patients. Lymph-Assist clinics have been set up throughout the 3 counties with good results. National Talks and Presentations: The Lymphoedema Service Lead in collaboration with the Head Nuclear Medicine Radiographer

80 Annex 5 presented a study in the use of lymph-assist at the British Lymphology Society s (BLS) Annual Conference in October The Ceredigion team are to do a joint presentation on Excellence in Collaborative Work with Dr. Rowlands (GP) and the Practice Nurse based in Brynmeddyg Surgery, Llanybydder, recognising the fantastic development of Multi-Disciplinary Team working in the community setting. Pembrokeshire lymphoedema service is currently partaking in a joint audit with the Cancer Bank Clinical Nurse Specialists to look at numbers of patients with IDC (invasive ductal carcinoma) that are referred on to the service. The results will hopefully be presented jointly as a poster in 2013/14. Powys Lymphoedema Service Powys Lymphoedema Service was established in December 2011 with Delia Keen and Elizabeth Coveney sharing the Lymphoedema Clinical Lead post, and supported by Karen Jones, the Lymphoedema Assistant. Accommodation for the service has been challenging, however in April 2012 the service was able to set up base in Builth Wells Community Hospital, mid-powys. A satellite clinic has also been established in North Powys based at Llanidloes Hospital. Powys is currently in the middle of reorganising how services are being delivered and as a consequence the service base will soon have to move from Builth Wells, however, as yet, there is no indication as to where a suitable alternative base may be found. Since December 2011 the service has received 191 referrals, of which 137 are on the active caseload, and 11 on the waiting list (the longest waiting time is less than 4 weeks). Patients have been repatriated from Hereford Lymphoedema service and Usk House (a Charity service based in South Powys), and stronger links are being built with the Bracken Trust (a Charity service based in mid Powys). The aim in the next few months is to set up a referral process for patients needing lymphoedema prevention advice and support following cancer treatment. This will be quite a challenge as Powys patients receive treatment for cancer at Velindre and Swansea, but also Shrewsbury, Gloucester, Hereford, Birmingham and Liverpool! We have used Juxta Cures with 3 patients as an alternative to bandaging when there has been ulceration present. The case study below is to be published in a Nursing Journal during June April 2012 April 2013 Strong links have been established with the District Nursing teams through the weekly Leg Clubs taking place across Powys. On the back of this, a Link Nurse/ Key Worker group has been set up and they meet twice yearly to keep up to date with service developments and training. These nurses take the lead within their teams for collaboratively providing care, particularly with toe bandaging and Multi- Layered Lymphoedema Bandaging (MLLB), and recognising when a referral to the lymphoedema service is required. The lymphoedema service leads have both been involved with teaching on the Palliative Care Masters Level Module, a University course which is held in Powys. Delia has also presented to the Powys Clinical Effectiveness Committee about the work of the new lymphoedema service. Our congratulations to both Delia and Elizabeth for completing their Masters Degrees! They are an inspiration to all their colleagues!

81 Annex 5 Abertawe Bro-Morgannwg University Health Board (ABM UHB) Lymphoedema Service ABM UHB provides lymphoedema services to all those living in Swansea, Neath, Port Talbot and Bridgend localities. Although the base is at Singleton Hospital, Swansea, the team provides inpatient services to all hospitals; we hold clinics on the Tenovus Mobile Unit in Bridgend, and we work collaboratively with the community, tissue viability and dermatology nurses for those patients less able to travel to a hospital or clinic site. From November 2012 the majority of breast surgery has moved to Neath Port Talbot hospital which forced the team to re-think their pre- and post-operative care for the Lymphoedema Prevention and Rehabilitation Scheme. We have employed two Band 4 Lymphoedema Assistant Practitioners who have been fully trained to provide this level of care, and to date the feedback has been very positive from the patients, and the team have fully integrated this new pathway. In this new venture we have seen our caseload of Breast Cancer patients double since then! Kaja Hopper and Susan Pugh our Band 4 Assistant Practitioners! Complex clinics/ joint working were set up in Neath Port Talbot in Since then 117 patients have been managed collaboratively, 89 are now maintained in compression hosiery and their wounds have healed. Collaborative working not only provides the patients with a seamless, efficient pathway of care, but also supports the sharing of knowledge and education between specialities. As a result of the cost effectiveness of our initial joint clinic we have established this within other areas locally and have successfully run clinics in Pencoed. Primary Care antimicrobial guidelines now include cellulitis guidance for patients with Lymphoedema / Chronic Oedema: Patients with lymphoedema/chronic oedema presenting with cellulitis may require antibiotics for 14 days or longer (this reflects the guidance within the BLS/LSN Cellulitis Document). ALL patients with lymphoedema/chronic oedema and cellulitis should be referred to the Lymphoedema Service. Independent prescribing project will commence 1 st June this is a pilot study where the two independent prescribers will prescribe all garments on FP10 instead of issuing GP recommendation forms. This is aimed at reducing the delay in obtaining garments, ensuring the correct garment are issued and so reduce waste and improve the service for the patients. Tenovus performed an audit of the use of the mobile unit which showed that patient activity and referrals have doubled over the last year, and that the number of non-attendance (UTA/DNA) of patients has significantly reduced since holding clinics in Bridgend. We now hold two clinics a month in the Bridgend locality, which are fully subscribed and a waiting list for appointments is being carefully monitored. We also hold Breast Cancer Lymphoedema Prevention and Rehabilitation sessions on the Tenovus Mobile Unit at Morrisons, Morfa (Swansea) and at Morrisons, Baglan (Port Talbot); and there are plans afoot to hold a session in Bridgend in the near future. As part of one of the Agored Lymphoedema Management modules, a patient was advised to perform daily skin care and was given simple exercises to build thigh muscle strength and improve mobility until multi-layered bandaging (MLLB) could be performed. Below are photos of the patient at his assessment, and the after photo showing the improvement of his skin condition and the dramatic change in limb shape in the two weeks from his assessment until the start of the MLLB! It just goes to show how effective our advice is when

82 Annex 5 patients take it on board the basics of looking after their skin and taking on a more active lifestyle. Before After Continuing professional development is actively encouraged in the team and Jodie has now passed first year of her Master s degree. Melanie is hard at work with her Doctoral Programme, and Cheryl is about to embark on her Doctoral Programme come October 2013! Rebecca is due to do her Casley- Smith MLD training which will be shortly followed by her independent prescriber s course in September 2013! Up and coming events for the ABM UHB Lymphoedema Service: The majority of the team will be running, walking and probably crawling as part of a Health Board initiative to get the staff moving! We are naming ourselves the Lymphomaniacs and hope to all cross the 10 kilometre walk/run/jog in Llanelli on 30 th June. In an effort to promote Lymphoedema Awareness and provide education for our patients, we will be holding a Lymphoedema and Me : a patient information day on 16 th September 2013 at Margam Park, Port Talbot. Lymphoedema Service Contact Details Health Board Base Telephone St. Woolos Aneurin Bevan Hospital, Newport Abertawe Bro- Morgannwg UHB Singleton Hospital, Swansea Wrexham Maelor Betsi Cadwaldr Hospital, Wrexham Whitchurch Cardiff & Vale Hospital, Cardiff Dewi Sant Hospital, Cwm Taff Pontypridd Prince Phillip Hywell Dda Hospital, Breast Carmarthenshire Unit, Llanelli Bronglais General Hywell Dda Hospital, Ceredigion Aberystwyth Withybush General Hywell Dda Hospital, Pembrokeshire Haverfordwest Builth Wells Community Powys Hospital, Builth Wells Melanie, Karen and Cheryl can be contacted at Singleton Hospital, Swansea; Hope you enjoyed the read! STOP the PRESS: we have just had formal confirmation that the ABM UHB lymphoedema team have now been adopted by Macmillan Cancer Support! We have also been short listed for the Macmillan Team Award! Go Team!