North Thames Teenager and Young Adults Cancer Network Coordinating Group (TYACNCG) Annual Report

Transcription

1 North Thames Teenager and Young Adults Cancer Network Coordinating Group (TYACNCG) Annual Report V0.9

2 Agreement Chair of the TYA Cancer Network (11-7A-201,202) Position: Divisional Director Name: Alex Berry Organisation: London Specialised Commissioning Group Date Agreed: 3 January 2013 Position: London Cancer and PTC Lead for TYA Name: Dr Rachael Hough Organisation: London Cancer, Integrated Cancer System Date Agreed: 19 December 2012 North Thames TYACNCG members agreed this Annual Report on Date Agreed: 7 December 2012 Annual Report Review Date: December 2013 This Annual Report will be circulated to: All TYA Network local authorities All TYA designated Trusts All PCT Clusters Teenage Cancer Trust CLIC Sargent The Annual Report will be published on the ICS London Cancer website.

3 Contents 1. Introduction Service Development / Improvement (11-7A-207) Achievements Formation of the North Thames TYACNCG with London Cancer Completion of TYA Hospital Designation Process North Thames TYA Cancer Engagement Event Development of TYA MDT at UCLH Challenges Establishment of directory of TYA Leads for the North Thames TYA Cancer Network Development of TYACN Patient Pathways Proposals for Service Development TYACNCG Meetings (11-7A-205) Discussion of Clinical Trials (11-7A-211) Audit (11-7A-210) Place of Care Audit What Really Matters to Patients? Patients view of supportive services offered at UCLH PTC Appendix 1 Workload Data at UCLH TYA PTC

4 1. Introduction The North Thames Teenager and Young Adults (TYA) Cancer Network delivers cancer services to young people across north London, Hertfordshire and Essex. It encompasses the constituent organisations within the defined areas below (Figure 1): London Cancer Integrated Cancer System (North East London, North Central London, West Essex) London Cancer Alliance Integrated Cancer System (North West London only) Essex Cancer Network Mount Vernon Cancer Network The North Thames TYA Cancer Network serves a population of 6.7 million people. TYA cancer services are delivered through the Principle Treatment Centre (PTC) situated at University College London Hospital (UCLH). The PTC provides cancer treatment for 13 to 24 year olds. In addition, patients aged years are offered choice between receiving their care at the PTC or a designated trust closer to home. Services for children are delivered through a joint PTC formed by Great Ormond Street Hospital (GOSH) and UCLH, working closely with designated Paediatric Oncology Shared Care Units (POSCUs) and their respective catchment areas. GOSH treats patients 0 12 years and UCLH primarily treats children for bone sarcomas and patients over 12 years. Teenagers receiving treatment at UCLH may receive shared care at a POSCU closer to home, depending on their age. The London Specialised Commissioning Group (SCG) is the lead SCG for the North Thames TYA Cancer Network and in collaboration with other SCGs oversees the co-ordination of commissioning of children s and TYA s cancer services across all constituent bodies of the North Thames network. Figure 1.Geography of the North Thames Teenager and Young Adult s Cancer Network. 4

5 2. Service Development / Improvement (11-7A-207) Due to local policy changes in London, the cancer governance structure of the North Thames Network has been in transition: in 2010 NHS London published the model of care for cancer services 1 which sets out the expectation that providers work together as Integrated Cancer Systems (ICS) with the aim of delivering seamless cancer care pathways in the capital. Two ICS have been commissioned for London: (i) from 1 st April 2012 hospital providers in North Central London, West Essex and North East London formed the ICS London Cancer; (ii) from 1 st October 2012 hospital providers in South and West London formed the ICS London Cancer Alliance. Thus, whilst the North Thames TYA Cancer Network covers the ICS London Cancer in its entirety, it only covers the north west part of the ICS London Cancer Alliance. In addition to the changes seen at the provider level, the commissioning landscape within London and surrounding areas has been evolving rapidly and announcement of the revised structure is expected for Achievements Formation of the North Thames TYACNCG with London Cancer On 1 May 2012 Dr Rachael Hough, TYA Lead Clinician for the UCLH PTC, was appointed as Lead for TYA cancer pathways for the ICS London Cancer. In agreement with the London SCG, Dr Hough and Alex Berry, SCG Divisional Director, were appointed as Co-Chairs of the North Thames Teenager and Young Adults Cancer Network Coordinating Group (TYACNCG). The generic membership of TYACNCG is specified in the peer review measure 11-7A-202 and includes representatives from all constitute organisations within the TYA Network. Due to the size of the North Thames Network this would equate to a full membership of over 42 individuals, which would make the meetings ineffective. For this reason the Chairs devised a modified governance structure of the TYACNCG that is adjusted to the size and complexity of the North Thames Networks. The modified governance structure has been agreed by the Chair of the ICS London Cancer that hosts the PTC and was formally acknowledged and approved by Clare Langslow and Donna McKenzie, Quality Managers for the National Cancer Action Team, on 15 November The governance structure is based on the model of London Cancer s executive Pathway Boards and in agreement with the London Specialised Commissioning Group. The TYACNCG acts as steering group with a smaller, skills-based membership that provides strategic guidance for TYA services and co-ordinates delivery of the annual work plan on behalf of the North Thames Network. Clinical input and intelligence on local requirements is sought from the TYA Cancer Clinical Working Group that provides a forum for all clinical staff, patients and constituent organisations within the North Thames Network (Figure 2). 1 NHS Commissioning Support for London.A model of care for cancer services Clinical Paper. August [Online] 2 National Cancer Action Team.Manual for Cancer Services: Children Teenage and Young Adults Measures. July [Online] 5

6 Figure 2.Governance structure of the North Thames Children, Teenager and Young Adult s Cancer Networks. Clinical staff, carers, patients and charity representatives were encouraged to nominate themselves for TYACNCG membership. Appointments to the TYACNCG took account of the peer review requirements, included advocates for patients and carer issues and ensured adequate representation of individual networks and clinical skill sets. The North Thames TYACNCG was formally established in November 2012, up until then the North Thames Children and Young People s Cancer Network Coordinating Group (CYPCNCG) had fulfilled the function of the TYACNCG Completion of TYA Hospital Designation Process The process for designating local TYA services was agreed in 2009 for North and South Thames. The commissioning process to designate TYA services started but could not be completed until the final version of the peer review measures was published, as greater clarity was required about the model for young adults with cancer. The final TYA measures were published in July The TYA hospital designation process led by the London SCG together with the East of England SCG was completed in February It is a key priority for the TYACNCG to develop robust relationships with all TYA designated hospitals to implement appropriate patient pathways and effectively support local staff in the delivery of excellent TYA cancer care across the system. The TYACNCG will regularly consult with all staff at designated hospitals to identify local needs, monitor the quality of services and provide expertise and support where needed. 6

7 The following hospitals were designated for providing care for young adults with cancer: Network TYA Designated NHS Trust(s) Barking Havering and Redbridge University NHS Trust Barts Health NHS Trust (for Barts and the Royal London) London Cancer ICS Royal Free Hampstead Hospital NHS Trust (Specialised pathways only e.g. Skin Cancer) Whittington Health NHS Trust (shared care only) London Cancer Alliance ICS (NWL part) Essex Cancer Network Mount Vernon CN Chelsea & Westminster Hospital NHS Trust (HIV and skin only) Imperial Healthcare Hospitals NHS Trust Southend University Hospital NHS Trust Colchester Hospital University NHS Trust Mid Essex Hospitals Trust Basildon and Thurrock University Hospital NHS Trust (shared care only) East & North Hertfordshire NHS Trust (Mount Vernon Cancer Centre / Lister hospital) North Thames TYA Cancer Engagement Event On 10 December 2012, the TYA Cancer Network Coordinating Group hosted an engagement event for patients, partner charities and clinical staff working in TYA services in the North Thames region. The event provided the first opportunity for clinical staff from the eleven TYA designated hospitals and the TYA PTC at UCLH to jointly discuss the future of TYA services within the region. The event combined active discussion with education elements on the latest progress in clinical trials research for TYA patients and outcomes of patient experience surveys. All presentations can be downloaded from the TYA section of the London Cancer website ( The TYACNCG will host a minimum of two engagement event per year that will be open to all clinical staff, interested patients and charities in the North Thames region Development of TYA MDT at UCLH On 4 May 2012 the TYA multidisciplinary team (MDT) was established at the UCLH TYA PTC as agreed by commissioners and the Chairs of the TYACNCG. The UCLH TYA MDT is the only TYA MDT in the North Thames Network. On 3 September, Maria Jose has been appointed to the position of TYA Cancer Service Project Coordinator to coordinate and support the work of the TYA MDT. Funding for this post has been obtained for an initial period of 6 months. The UCLH TYA MDT convenes weekly on Wednesdays, from 15:00-17:00. Teenagers aged years are referred to the UCLH PTC for treatment. Young adults aged years (who have chosen to receive treatment at a TYA designated hospital in the North Thames Network), the respective site-specific MDT will liaise with the TYA MDT at the PTC via video-conference (see Appendix 1 for workload data). 7

8 2.2 Challenges Establishment of directory of TYA Leads for the North Thames TYA Cancer Network After February 2012, the London SCG informed all trusts of the outcomes of their bids to become designated for the care of TYA cancer patients. However, at subsequent meetings of the CYPCNCG in May and September 2012 it became evident that clinical staff remained uncertain of the designation status of their trust. Furthermore, contact information for TYA Leads at designated trusts as provided in trusts applications to the SCG was found to be inconsistent: in some cases the designated members of staff had left the trust and no replacement had been appointed or individuals were unaware of their lead role for TYA cancer care. Thus, the relationships between the TYA PTC and TYA designated hospitals are still in the developmental stage and this is a priority area for the TYA Network to address Development of TYACN Patient Pathways In accordance with the TYA Improved Outcomes Guidance (IOG), young adults (19-24 years) must be given the choice to receive treatment at the TYA PTC or at a designated hospital. In the latter case all treatment decisions should be agreed jointly between the TYA MDT and the respective local site-specific MDT at the designated Trust. Thus, robust patient referral pathways for young adults covering all tumour types that are applicable to all designated hospital sites must be agreed. The Chairs of the TYACNCG are producing a referral pathway for all tumour types for patients reporting to a TYA designated hospital. The pathway aims to cover the patient journey from diagnosis to treatment to living with and beyond cancer and follow up care. This TYA pathway will be communicated to the network site-specific groups (NSSGs) for approval by the respective NSSG s Chair. This process will be initiated; however, it will take some time due to the size and complexity of the North Thames Network: the North Thames TYA Cancer Network covers two cancer networks and two integrated cancer systems, each governed by ten site-specific groups covering brain, breast, colorectal, gynaecology, haematology, head and neck, lung, skin, upper GI and urology cancer. Thus, approval has to be obtained from 40 Chairs, some of which have yet to be appointed by the respective cancer network/integrated cancer system. The TYACNCG has therefore focused on developing strong links with the TYA Leads at the respective TYA designated hospitals to ensure that all sites adhere to the referral procedures as outlined in the TYA IOG. We will provide further evidence on this during the peer review visit in February

9 2.3 Proposals for Service Development Development Area Service Objective Implementation Timeline Establishment of the TYA MDT appointment of TYA Clinical Lead for UCLH PTC Completed - May 2012 appointment of TYA Project Manager to coordinate the MDTs activities Completed - May 2012 Facilities Workforce Training and Education Establishing a dedicated young adult unit at the UCLH PTC Establishing a Network Lead Nurse for TYA Defining workforce needs to enable designated hospitals to support TYA patients Development of a standardised training programme for TYA nurses Conducting a place of care audit to identify what matters most to TYA patients during Completed - May 2012 in-hospital stays Producing designs for new young adult unit based on patient feedback Completed - May 2012 Opening of young adult unit: year olds, 12 beds T13S Completed - December 2012 Funding for a band 8a nurse appointment obtained from the Teenage Cancer Trust with Completed additional funding to 8c grade agreed by UCLH Advertisement of post and appointment To be completed by January 2013 Scoping exercise to be undertaken across all designated trusts, led by the 8c network November 2013 lead nurse when in post development of content obtain funding and accreditation Clinical governance and quality improvement Data collection Establishment of the TYA Cancer Clinical Working Group Monitoring patient flows and quality of service Chairs of the TYACNCG to agree membership of the Clinical Working Group in line with peer review measure 11-7A-202 Convene Clinical Working Group minimum 2 times per year develop a directory for clinical staff working in TYA cancer services at designated hospitals, to be updated as appropriate at every meeting of the TYACNCG Developing a report card for TYA designated hospitals, to be completed quarterly Completed - November 2012 First meeting held in December 2012 Completed - December 2012 To be completed by March 2013

10 3. TYACNCG Meetings (11-7A-205) In 2011/12 meetings of the TYACNCG and its predecessor, the CYPCNCG, took place on the following dates: 12 April June September February May September December 2012 Planned meeting dates for 2013 are as follows: 11 January Discussion of Clinical Trials (11-7A-211) The TYACNCG has supported opening of the BRIGHTLIGHT study at all eleven TYA designated hospitals including the TYA PTC at UCLH. The BRIGHTLIGHT study evaluates the how specialist services affect the success of treatment and how well young people return to normal life such as education or work after treatment. The recruitment to this study began in November 2012 and is actively promoted by the TYANCG. The TYACNCG has requested from the Cancer Research Networks covering the North Thames region a report that informs the TYA MDT on clinical trials available to young adults (19-24) at the TYA designated hospitals covering the following malignancies: Leukaemia Haematology NSSG Lymphoma Haematology NSSG Germ cell malignancy Urology & Gynaecology NSSGs Bone and/or soft tissue sarcoma Sarcoma NSSG Brain and CNS malignancy Brain & CNS NSSG Malignant melanoma Skin NSSG The report and the suitability of individual clinical trials for TYA patient enrolment will be discussed at a meeting to be attended by Alex Berry (Chair of the TYACNCG), Dr Rachael Hough (Lead Clinician of TYA PTC), Dr Jeremy Whelan (TYACNCG Research Lead) and Prof Nick Lemoine (London Cancer Head of Research Implementation who liaises with all Research Cancer Networks within London Cancer and surrounding areas) or named delegates. The meeting will be scheduled in early Under current regulations, Research Networks in Mount Vernon, London Cancer and Essex do not hold data on the age of patients recruited into clinical trials. Thus, it has not been possible to produce a current report detailing the number of TYA patients enrolled in cancer clinical trials in these areas. Going forward, clinical trial enrolment will be jointly decided by the TYA MDT and patient s respective sitespecific MDT, appropriate records will be held at the UCLH TYA PTC. The Research Networks are: North London Research Network North East London Cancer Network Essex Cancer Research Network Mount Vernon Cancer Research Network

11 5. Audit (11-7A-210) The TYACNCG recognises the spirit of service review and improvement and the value of audits. A number of audits have been carried out by the UCLH TYA MDT, which is the only TYA MDT for the network. 5.1 Place of Care Audit What Really Matters to Patients? The TYA MDT at UCLH wanted to create an environment that promotes patient experience. All TYA patients attending the UCLH PTC over a one month period (state when) were invited to take part in a questionnaire. The returned questionnaires (40 in total) were analysed using descriptive statistics, with comments reported separately. The key findings from the audit were: TYA patients highly value being cared for in a unit alongside others of the same age group, with access to a recreational area and a resident carer. Sex segregation was generally considered unimportant. Creating separate teenage and young adult areas, with an age cut off of around 18/19 years, was the most popular configuration for the in-patient facility. As a result of this audit a new young adult in-patient facility will be imminently established on T13S, which will consist of two 4 bedded bays and 4 side rooms. It is hoped that this unit will be operational by December 1 st Patients view of supportive services offered at UCLH PTC The TYA MDT initiated an audit to explore the different aspects of support provided at UCLH. A questionnaire was developed in partnership between the senior TYA service team at UCLH, the Teenage Cancer Trust and CLIC charities. It covered the following areas: Demographics Access to support Groups Support network days End of treatment Questionnaires were given out to TYA patients aged years attending in-patient, out-patient, daycare or ambulatory care facilities during a one month period (July 2012). Families of these patients were also offered the chance to participate in the audit. TYA CNSs also sent out s to all TYA patients with a link to complete the same questionnaire via on on-line survey. In total 55 questionnaires were received, of which 35 were completed on paper and a further 20 online. 45 (82%) patients and 9 (16%) parents or carers responded. 1 person did not state whether he / she was a patient or parent/carer. Of the 45 patients, 27 patients were aged between years and treated in the CYPCS, 18 patients were aged years and were treated in adult cancer services. 11

12 The audit identified a number of priorities for TYA patients and their parents and carers. Most Important Things to Patients Access to written and other information when needed and at an appropriate rate ( step by step ) Attitude of all staff and team working Having contact numbers and knowing who to speak to Key members of team providing support (ward nurses, CNS, CLIC social worker & activity coordinators) Access to 24/7 room and activities Access to school and teachers Pleasant environment Most Important Things to Parents / Carers Identified CNS Access to CLIC social workers Access to information in non-medical terms Staying with patient and access to Paul s House Contact numbers In general, patients felt well supported during their treatment at UCLH. No significant differences were found between different tumour groups or age groups. The data from this audit will be used as the basis of review of supportive services and provision of psychosocial support for young adult patients. The following areas for improvements were identified: Travelling for tests which could have been performed locally More social work input Difficult to contact ward More practical and emotional support for family members Practical advice at end of treatment Better contact information for the local hospital The full report is still in preparation and will be presented to the MDT for discussion.. It is anticipated that these results will inform strategic change in the delivery of supportive care to TYA patients throughout their journey, including group work, the support network and preparation for the end of treatment. The audit will also be used as the basis of a review of TYA supportive services and how the PTC will collaborate with the designated hospitals. It will also look at the provision of psychosocial support for young adult patients, both at the PTC and locally 12

13 02/11/ /11/ /11/ /12/ /12/ /01/ /01/ /02/ /02/ /03/ /03/ /04/ /04/ /05/ /05/ /05/ /06/ /06/ /07/ /07/ /08/ /08/ /09/ /09/ /10/ /10/ /10/2012 No. of New Patients Discussed Appendix 1 Workload Data at UCLH TYA PTC TYA MDT 10 TYA Weekly Activity Nov Oct MDT Date Activity Weekly number of new patients discussed between November 2011 and October 2012.

14 02/11/ /11/ /11/ /12/ /12/ /01/ /01/ /02/ /02/ /03/ /03/ /04/ /04/ /05/ /05/ /05/ /06/ /06/ /07/ /07/ /08/ /08/ /09/ /09/ /10/ /10/ /10/2012 Number of Patients Discussed Activity TYA MDT MDT Date Cumulative Number of NP Cumulative Number of ER Number of New Patients Discussed (NP) Activity There were 151 patients discussed between November 2011 and October 2012, of whom 33 were external referrals. 14

15 02/11/ /11/ /11/ /12/ /12/ /01/ /01/ /02/ /02/ /03/ /03/ /04/ /04/ /05/ /05/ /05/ /06/ /06/ /07/ /07/ /08/ /08/ /09/ /09/ /10/ /10/ /10/2012 Number of Patients Discussed -Psychosocial MDT Psychosocial MDT 20 TYA Weekly Activity Nov Oct MDT Date Activity Weekly number of patients in psychosocial MDT discussed between November 2011 and October

16 02/11/ /11/ /11/ /12/ /12/ /01/ /01/ /02/ /02/ /03/ /03/ /04/ /04/ /05/ /05/ /05/ /06/ /06/ /07/ /07/ /08/ /08/ /09/ /09/ /10/ /10/ /10/2012 Number of Patients Discussed Activity Psychosocial MDT MDT Date Cumulative Number of Patients discussed - Psychosocial MDT Number of Patients Discussed -Psychosocial MDT Activity There were 282 patients discussed between November 2011 and October