All-Party Parliamentary Group on Motor Neurone Disease Inquiry into Access to Specialist Palliative Care for People with Motor Neurone Disease in England Call for Evidence 8 December 2009
Introduction The All-Party Parliamentary Group (APPG) on Motor Neurone Disease (MND) is a cross-party group of MPs and Peers with an interest in MND. The Group is holding a public inquiry into access to specialist palliative care services for people with MND living in England. This is the first inquiry to be held by the Group. The inquiry will look at access to specialist palliative care by people with MND in light of, and with reference to the following guidance/reports: the National Service Framework for Long-term Neurological Conditions (Quality Requirement 9) the End of Life Care Strategy the National Audit Office report into end of life care Further information on these documents can be found in the Appendix on pages 5 and 6. Scope of the inquiry The inquiry will look at access to specialist palliative care for people with MND in England. It will seek to establish the extent of variations in the provision of specialist palliative care; identify examples of good practice and identify gaps in services. The World Health Organisation describes palliative care as 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. Specialist palliative care can help people with MND achieve quality of life and dignity in death, and can influence their end of life decisions. With half of those with the disease likely to die within 14 months of diagnosis, specialist palliative care is an important service for people with MND. This inquiry will cover England only and will not consider any issues related to assisted suicide. 1
Terms of reference 1. The inquiry will focus on the following areas. Please describe from your perspective the current situation, issues and any concerns regarding the following: (a) the identification of people with MND within the community (and hence who can benefit from specialist palliative care) (b) the planning and co-ordination of specialist palliative care for people with MND (c) Fast-track access to specialist palliative care as needs arise, including 24 hour access (d) Access to specialist palliative care in all locations - a person s home, a hospice, a care home, hospital (e) The management of all symptoms of MND by specialist palliative care providers (f) The specific management of interventions such as percutaneous endoscopic gastrostomy (PEG)/ radiolgically inserted gastrostomy (RIG) and non-invasive ventilation by specialist palliative care providers (g) The specific management of communication difficulties in the provision of specialist palliative care (h) The specific management of people with MND with cognitive impairment in the provision of specialist palliative care (i) The role of rehabilitation within palliative care, for example access to physiotherapy and occupational therapy (j) The provision of psychological, social and spiritual support for people with MND (k) Support for family carers of people accessing specialist palliative care, including bereavement support (l) The provision of information on the full range of specialist palliative care provision available locally and how to access it (m)the roles, and co-ordination, of different health and social care professionals in the provision of palliative care GPs, neurologists, district 2
nurses, palliative care consultant, hospice staff, care home staff, hospital staff (n) The role of MND Care Centres, commissioners and third sector organisations in the provision of specialist palliative care to people with MND 2. What do you think are the barriers to provision of high quality specialist palliative care services to people with MND? 3. There are currently three good practice guidelines for the provision of palliative and end of life care the Gold Standards Framework (for the last 12 months of life); the Liverpool Care Pathway for the Dying (for the last 72 hours of life) and the Preferred Priorities of Care. Do you agree that these are being used effectively for people with MND? 4. In your experience is access to specialist palliative care determined by need and not diagnosis? Or do some conditions have priority access to palliative care? 5. The MND Association recommends that everyone with MND is referred to specialist palliative care services soon after diagnosis due to the often rapid progression of the disease and the expertise of specialist palliative care services in managing a condition that is incurable. In your experience, does this happen? 6. Do you think the End of Life Care Strategy has improved access to specialist palliative care for people with MND? Has the funding attached to the Strategy reached the services it was designed for? 7. Is it your experience that funding for specialist palliative care services for people with MND is determined equitably? The Group would welcome the views of respondents on these questions and any others which fall within the scope of the inquiry. The APPG is inviting written submissions from all interested parties, including people with personal experience of MND, organisations representing service users, organisations representing health and social care professionals, commissioners, regulatory bodies and individual health and social care professionals. The Group will be holding a small number of oral evidence sessions during January 2010 and aims to publish its report in spring 2010. 3
Submitting evidence Submissions of written evidence should be sent to: Alison Railton Secretary to the APPG for MND PO Box 246 Northampton NN1 2BG Tel: 01604 611842 or emailed to: alison.railton@mndassociation.org Please include the following: A brief introduction to the person(s) or organisation submitting the evidence Full postal address and contact details of the sender Submissions should be no more than 5,000 words and address one or more points within the terms of reference. Supplementary evidence may also be sent (leaflets, articles etc) but it would be helpful if the main points from the supplementary material were also contained in the main body of evidence. The deadline for submitting evidence to the inquiry is Friday 22 January 2010. 4
APPENDIX About the APPG on MND The APPG on MND is a cross-party group of MPs and Peers with an interest in MND and was established in 2002. The Group is chaired by Mark Todd MP. The aim of the APPG is to raise awareness and understanding of MND amongst Parliamentarians and to influence policy to improve services available to people affected by MND. The APPG meets several times a year and focuses on different aspects of MND the provision of health and social care and the promotion of medical research. The MND Association acts as the Secretariat to the Group. About the NSF for Long-Term Conditions In March 2005, the Department of Health published the NSF for Long-term Neurological Conditions. The NSF establishes quality requirements for the delivery of health and social care for people with a neurological condition in England. Quality requirement 9 on palliative care aims to enable people in the later stages of long-term neurological conditions to receive a comprehensive range of palliative care services when they need them to control symptoms; offer pain relief and meet their needs for personal, social, psychological and spiritual support. The NSF states that people with rapidly progressing conditions benefit from early referral to palliative care services soon after diagnosis as symptoms may arise very quickly and survival may be short. This is particularly important for people with motor neurone disease who may lose their ability to speak, making it much more difficult for them to take part in full discussions about their care plan. About the End of Life Care Strategy The End of Life Care Strategy Promoting high quality care for all adults at the end of life was published in July 2008. The Strategy was the first comprehensive framework promoting high quality care in England for all adults approaching the end of life. The Strategy aims to lead to better identification of people approaching the end of life; better care planning at the end of life; better coordination of care, more rapid access to care as needs change; and the delivery of high quality care in all locations. It aims to give people more choice about where they die and provide better support to carers to enable more people to die at home. 5
About the NAO Report on end of life care In November 2008 the National Audit Office (NAO) published a report into End of Life Care. The report found that end of life care services are not meeting the basic needs of many people approaching the end of their life. Whilst most people wish to be cared for and die at home the vast majority of deaths occur in hospital. The report claims that by reducing the amount of time people spend in hospital unnecessarily it could make resources available to support them more effectively at home. The MND Association s Year of Care Pathway was cited as an example in the report of a condition specific initiative to improve end of life care. Research by the MND Association was also included in the report that estimated in the last year of life each person with MND receives informal care which would cost 101,000 to provide professionally. The report recognised that care is provided by informal carers such as family members, close friends or volunteers and concluded that they should be provided with more support. 6