Collation of responses to GW. 1. Please state the definitions that you use for different forms of palliative and end of life services

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1 Collation of responses to GW 1. Please state the definitions that you use for different forms of palliative and end of life services Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments National Council for Palliative Care (2010) End of life care is care that helps all those with advance, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support (DoH 2008) 2. Please confirm whether end of life care was included in your most recent joint strategic needs assessment a. If yes, please provide a copy of your joint strategic needs assessment The most recent joint strategic needs assessment was completed in 2009/10. End of Life Care was not specifically included in that assessment. The Joint Strategic Needs Assessment is currently being re-drafted and end of life care will specifically be included. 3. Please confirm or deny whether you hold records of the number of people with motor neurone disease in your PCT We have a dedicated nurse specialist who provides care and support to people in Milton Keynes with MND. As of 8 th November 2011, she has 18 people on her caseload. Over time, these numbers remain fairly constant. There is a robust care pathway in place for people with MND so from diagnosis throughout the trajectory of the disease there is input from the nurse specialist in conjunction with a wide range of services from acute hospital care, rehabilitation services to community and palliative care. The nurse specialist works very closely with the local branch of the Motor Neurone Disease, and this helps to provide a co-ordinated service for local people. Locally, we are in the process of reviewing the operation of a strategic planning group for Neurological conditions, where key organisations will work together with service users and carers to ensure better planning and commissioning of services for people with a range of conditions, including MND. I have attached some information about the services provided in Milton Keynes, which you may find of interest. Please see attachments. a. If yes, please provide details of the number of people with motor neurone disease in your PCT See above current numbers on caseload are 18. 1

2 4. Please confirm or deny whether you hold records of the number of people requiring (i) specialist palliative and (ii) end of life care in your PCT a. If yes, please supply details on the number of people requiring (i) specialist palliative and (ii) end of life care in your PCT (i) Specialist Palliative Care is provided by the Clinical Nurse Specialist (CNS) Team from a Hospice in the community. There were 180 people receiving specialist palliative care from the CNS team in September (ii) There were 314 people on the end of life registers at 4 th November 2011, and identified as being in the last year of life. Of those 314, 294 patients have been given the opportunity to discuss and develop an advance care plan. 186 have actually specified a preferred place to die. In January, February and March of 2011, there have been 155 deaths at home, in October, November and December 2010 there were 136 deaths at home. Of the 289 patients that died over that 6 month period, 154 were on the Liverpool Care Pathway, this is an increase of 76% compared to the previous year. 5. Please confirm or deny whether you hold details on expenditure on (i) specialist palliative and (ii) end of life care services for (a) 2007/08 (b) 2008/09 (c) 2009/10 (d) 2010/11 in your PCT a. If yes, please supply details of this expenditure Costs are for the Hospice and MK CHS only. 2007/08 1,066, /09 1,253, /10 1,244, /11 1,127,000 Additionally, within the NHS Community Provider Service the End of Life Care team has an annual direct cost budget of 80,390 for 2010/ Please confirm or deny whether you hold details of expenditure on motor neurone disease for (a) 2007/08 (b) 2008/09 (c) 2009/10 (d) 2010/11 a. If yes, please supply details There is a dedicated post of clinical nurse specialist for MND, and the annual cost for this post is 60,000 per annum. It is difficult to be definite about the other costs as people with MND use health and social care services that are funded from generic contracts such as those held with the acute hospital or community services. 2

3 7. Please confirm or deny whether you hold contracts with providers of (i) specialist palliative and (ii) end of life care a. If yes, please supply a) the names of organisations with whom a contract is held b) the value of each contract and c) the specification of each contract a) Specialist palliative care is provided under agreement with a local Hospice. End of life care is provided by NHS community provider services and numerous external providers eg nursing homes b) The combined value of the agreement with the NHS community provider service and the hospice is as per the figures in 5 above. c) The specifications with the hospice and the NHS community provider service for the End of Life Care Team are currently under review. 8. Please confirm or deny whether you hold data on GP practices in your PCT that have established an end of life care register a. If yes, please supply details of the proportion of practices that have established an end of life care register ALL GP practices have established an end of life care register. (22 practices) 9. Please confirm or deny whether your organisation has developed any local tariffs for a) specialist palliative or b) end of life care a. If yes, please supply details There are no such local tariffs. 10. Please confirm or deny whether your organisation has agreed CQUIN schemes with providers of palliative or end of life care services a. If yes, please supply details of the CQUIN indicators agreed CQUINs are in place with the NHS community services provider, but there are none that relate to palliative or end of life care services. 11. Please confirm or deny whether your organisation holds information on performance against CQUIN indicators on (i) specialist palliative or (ii) end of life care a. If yes, please supply details of (a) indicator thresholds and (b) if thresholds were met As per 10 above, no such indicators exist. 12. Please confirm or deny whether your organisation has made payment on CQUIN indicators relating to (i) specialist palliative or (ii) end of life care a. If yes, please supply details on payments made As per 10 above, no such indicators exist and so no such payment has been made. 3

4 13. Please confirm or deny whether your organisation publishes data on (i) specialist palliative or (ii) end of life care services in your area a. If yes, please supply details No. The PCT does not publish data on (i) specialist palliative or (ii) end of life care services 14. Please confirm or deny whether your organisation provides written information for patients on (i) specialist palliative or (ii) end of life care services in your area a. If yes, please supply details The End of Life Care Team (EOLCT) provide information about the Liverpool Care Pathway, Advance Care Planning and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) for patients and their relatives. EOLCT also have a lot of info on the patient page of their website, accessed via the PCT web site. The PCT are currently developing bereavement information leaflets. 15. Please confirm or deny whether your organisation provides guidance to GP practices in your area on (i) specialist palliative or (ii) end of life care services a. If yes, please supply details of this guidance The PCT have provided every GP practice with a resource file with an array of information relating to palliative and EOLC. Every individual GP has been sent a copy of the General Medical Council guidance for end of life care. The EoLC team and post out any new National documents which are relevant such as the Royal College of Nursing s guidance relating to how to respond when an EOL patient ask health care professionals to hasten their death. We have given every GP and practice manager information leaflets around DNACPR. The GPs are also encouraged to visit the EOLC website 16. Please confirm or deny whether your organisation has in place agreed pathways of care for (i) specialist palliative or (ii) end of life care services a. If yes, please supply details Yes: Liverpool Care Pathway Gold Standards Framework Preferred Priorities for Care DNACPR 17. Please confirm or deny whether contracts your organisation has in place for out of hours services contain standards relating to (i) specialist palliative or (ii) end of life care services a. If yes, please supply details See answer to question 7. 4

5 Report of the working party set up to develop a co-ordinated approach to the support of people with Motor Neurone Disease in the Milton Keynes Area Background A meeting was held on 13 th January 1999 at Milton Keynes Hospital at the invitation of the Milton Keynes branch of the Motor Neurone Disease Association. The meeting was chaired by Dr David Hilton Jones and attended by managers & practitioners from Bucks Health Authority, Milton Keynes Council Neighbourhood Services, Milton Keynes General Hospital Trust, Milton Keynes Community Health Trust, Milton Keynes Community Health Council, a General Practitioner & representatives of the MND Association. Brian Wilson reported on the findings of a survey conducted amongst people with MND and their carers living in the area covered by the Milton Keynes Branch. (Milton Keynes, Aylesbury Vale, Leighton Buzzard) The survey responses highlighted insufficient information about sources of help and how to gain access to services insufficient communication between agencies and professionals responsible for providing services A working party was set up to explore the means of achieving a more co-ordinated service for people affected by MND in Milton Keynes. 1 This is the first report of that working party. Its recommendations are as follows: 1. Needs of People Affected by MND and their Carers The progression of MND is often rapid, severe and unpredictable, imposing a series of problems and forced adjustments in lifestyle. Average length of survival is estimated to be between 2 5 years. In a sample of 65 deaths in this region since 1997, average survival time from diagnosis was 14 months. There is no cure for MND and only one drug (Rilutek) offers the possibility of a modest extension to life expectancy. The whole approach to care is palliative, requiring a collaborative partnership between doctors, nurses, therapists, social workers and specialist palliative care. Objectives of care are that people affected by MND are: 1 Appendix 2 5

6 confident that they know who will help & how enabled to make informed choices about living with the disease given appropriate support when they need it able to attain the best achievable quality of life. Service providers should be: informed about the nature of the disease informed about the circumstances of people affected by MND. informed about relevant resources & how to get them clear about roles & responsibilities able to respond in a needs led time scale 2. The Care Pathway Care Pathways are structured, multi-disciplinary care plans which set out essential steps in the care of specific conditions. They have typically been used for management of episodes of care in acute settings. The model proposed here is intended to provide a secure & structured framework for care throughout the course of the disease & to enable professionals to work in partnership across organisational boundaries. In the opinion of the working party, the severity, speed & unpredictability of progression in many cases of MND justifies the use of such an approach. 6

7 The proposed Milton Keynes MND Care Pathway for MND will aim to: Provide access to information about MND & sources of expertise Provide for the assessment of need and negotiation & agreement of continuous care packages Set out a structured framework for responding to problems 3. Proposed Organisational Structure 3.1. The lead agency will be the Physical Disability Resource Team (PDRT). The team is comprised of multi-disciplinary team of qualified professionals, (Physical Disability Co-ordinators) with a wide range of experience and knowledge relating to physical disability and neuro-degenerative conditions including MND A member of the team will be nominated as MND Specialist Adviser. The role of the MND Specialist Adviser will be to develop and lead a service which effectively co-ordinates the provision of timely and sensitive support and services to meet the changing needs of people affected by MND and the needs of their carers in the Milton Keynes area All people with MND will be offered referral to the PDRT at diagnosis or when moving into the area Each person with MND, will be offered a Case Co-ordinator according to their need and choice. The case co-ordinator will be a Physical Disability Co-ordinator, a Social Worker or a District Nurse working singly or in partnership with the MND Specialist Adviser. The role of the case co-ordinator will be to assess the changing needs of the person affected by MND and their carers and to arrange that appropriate services are provided in a structured & timely manner. 4. Proposed Communication Structure 2 Purpose To ensure that the person affected by MND and all involved professionals are kept up to date at intervals appropriate to the progress of the disease. To ensure that each professional is clear about their responsibility & how it interrelates with those of others The Case Co-ordinator will be responsible for co-ordinating the care pathway & acting as a central point of reference for person with MND & carers collating information and producing reports within an agreed time schedule Communication will be based around a cycle whose time interval is determined by the current progress of the disease The first cycle will be initiated by the Case Co-ordinator following diagnosis / referral Two documents will be completed: A Registration document giving personal details of the person with MND and contact details of all professionals & agencies currently or intended to be involved. A Statement of Need lists actions to be taken & professionals responsible. This complete document will be circulated to all those involved, including the GP & consultant. It calls for a response from professionals on completion of action or by the review date, whichever is the earlier. This response details action taken & further needs identified. Review The Case Co-ordinator will compile a Review Report from the responses and produces a new statement of need. 2 Appendix 1 7

8 Benefits The benefits, which would result from the changes proposed in the preceding sections are dealt with under three headings, Patients and Carers, Professionals, Participating Organisations Patients and Carers The approach is aimed at putting people affected by MND in control by giving them an easily accessible person who will discuss developing problems, arrange appropriate, agreed and timely support, and who will fulfil a co-ordinating role throughout the illness. There is no doubt that this will be a considerable gain in the quality of the service Professionals. With a properly co-ordinated approach and regular reports, other professionals (speech therapists, O.Ts, physiotherapists, dieticians etc) will be enabled to plan their input in partnership with each other thus avoiding duplications & gaps in service provision Participating Organisations. With more effective use of time, it should be possible to use resources more efficiently. More effective contact time allows more time for patients who really need help, professional time for more patients, or time for personal & service development. There could also be savings in travelling costs Partnership The working group believes that this approach will strengthen and develop the partnership between statutory and voluntary bodies. The MND Association is committed to supporting this initiative by providing support for educating professionals as well as continuing its established role in providing equipment and funds directly to people affected by MND, 5. Costs There may be increased travelling costs for PDRT members and minor printing costs for new documentation, which would be required for improved communications to back-up the improved co-ordination approach. Against the potential savings in using resources more effectively across all the participating organisations, it is not felt that the above costs are significant. 6. Next steps The proposals are not put forward as the final, definitive model. They are presented as a step towards that end. The working group hopes that managers and their teams will feel that the proposal is worth instigating. It is proposed: To implement the proposed changes within one month To review in six months. To learn from the experience and introduce any necessary further changes. To continue to improve and develop co-ordinated care of people affected with MND and their carers. It is hoped that there will be a continuing evolution of the approach over time and that the model of co-working developed will prove useful in pointing to the improved care of people with complex and rapidly deteriorating conditions - not only in Milton Keynes but nationally. It is proposed to launch this scheme at a study day to be held in the autumn of

9 Stages in MND Care Pathway Appendix 1 Event Responsibility Action Documentation Measure of outcome 1 Diagnosis Consultant Verbal explanation to PaMND Sensitive & truthful statement of diagnosis [MNDA leaflet 1?] PaMND aware of diagnosis 1.1 Offer of follow up appointment Written confirmation to follow Date set for follow up 1.2 Information about support services Milton Keynes MND Services leaflet [see example] MNDA Helpline card 1.3 Referral to PDRT Registration document (Form 1) 1.4 Inform GP Copy of Form 1 2 Referral to PDRT Specialist Adviser Appointment of Case Co-ordinator 3 Appointment of Case Co-ordinator PaMND has access to information & advice Case co-ordinator Initial contact offer appointment for home visit Contact made within 5 working days. Appt. offered at contact 3.1 Initial Assessment including social, emotional, functional needs Form 2 Statement of Need - documents actions needed & referrals made 3.2 Statement of need negotiated with PaMND Patient held record [Forms 1 & 2] PaMND knows what to expect & from whom 3.3 Make referrals to appropriate agencies /professionals Forms 1 & Inform Consultant, GP, Neighbourhood Services + all agencies currently involved 3.5 Set review date 4 Actions Nominated professionals As agreed 4.1 Feedback Feedback to PDRT 5 Periodic Review Case Co-ordinator New assessment 5.1 New Statement of Need Stages are repeated to form Continuing Care Pathway. following referral information & own assessment at completion or interim report by review date Summarise actions, results, anticipated needs Forms 1 & 2 Completed Form 2 Circulate as before New Form 2 Form 3 Review Report All professionals aware of needs & actions initiated All aware of current position Documentation to be developed 9

10 Appendix 2 Motor Neurone Disease Working Party Chair Lynne Hudgell, Physical Disability Co-ordinator Milton Keynes Community Health Trust David Hilton-Jones Consultant Neurologist Milton Keynes General Hospital NHS Trust Brian Wilson Deputy Chairman MND Association, Milton Keynes Branch Anna Fisher Social Worker Neighbourhood Services, Milton Keynes Council Carole Kingston Regional Care Adviser MND Association Denise Middleton Physical Disability Co-ordinator Milton Keynes Community Health Trust Sarah Monday Nurse Willen Hospice Julie Reece Committee Member MND Association, Milton Keynes Branch Christopher Clifford Senior Nurse, District Nursing Milton Keynes Community Health Trust Motor Neurone Disease Clinical Specialist: Anna Kent RGN BSc(HONS), Tel: Milton Keynes Primary Care Trust, Physical Disability Resource Team, Bletchley Therapy Unit, Whalley Drive, Bletchley. MK3 6EN Anna.Kent@mkpct.nhs.uk 10

11 Assessment Review Monitor & Adjust Plan Action 11

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