developing palliative care support

THE NATIONAL COUNCIL FOR PALLIATIVE CARE

Developing Palliative Care Support for People with

Parkinson’s Disease

Moving Forward Together

Lucy SuttonNational Policy Lead


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.’ (NICE, 2004)


Causes of deathTotal Deaths = 512,993 England and Wales 2005 (ONS)

36% 26% 14% 20%

3% 1%

0% 20% 40% 60% 80% 100%

Circulatory Disease Cancer

Respiratory Disease Neurological Conditions

Renal Failure Other


Change in rhetoric - but little change in reality?

2004/5 1996/7

Hospital Support 11% 4% 5% 1.5%

Day Care 8% 2.5% 6% 2%

Home Care 5% 1.5% 3% 1%

Inpatient 5% 1.5% (MDS Access Data)


Long Term Conditions NSF Quality Requirement 9

People in the later stages of long-term neurological conditions are 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, in line with the principles of palliative care.


NICE• The needs of patients in the palliative care stage of PD

are often under-recognised and considered too late in their care.

• Better understanding of the complexity of the manifestations of the disease, its innate variability, and the roles of the extended team members, which may or may not include the palliative care team, can help to improve care and reduce distress.

• Care needs to be supported by good care planning since many problems can be predicted or avoided with appropriate strategies.

• Palliative care requirements of people with PD should be considered throughout all phases of the disease.

• People with PD and their carers should be given the opportunity to discuss end-of-life issues with appropriate healthcare professionals.


DiagnosisMaintenanceComplexPalliative

Pd – is it all palliative?


... the early application of palliative care principles is very relevant to Parkinson’s disease because ...

a. the disease is progressiveb. it has no cure and management is essentially symptomatic and supportivec. it has significant effects on the immediate family and also friends etcd. all care in Pd is well suited to a team

based multidisciplinary approach New Dimensions in palliative care: a palliative approach to neuro- dgenerative diseases and final illness in older people. Linda j Kristjanson, Christina Toye and Sky Dawson. MJA 2003;179:S41-S43


National Council


Neurological Conditions Policy Group Priorities

• Questionnaire

• Models of Good Practice

• Linking into LTC NSF/NICE - What are the end-of-life palliative care needs of PD patients and what treatments are available? These aspects are currently being explored within the neurological conditions policy group of the National Council for Palliative Care, working closely with the PDS. www.ncpc.org.uk/policy_unit/neuro_pg.html

• Palliative Care Pathway

• Sharing the Learning


Changing ThisGood Practice – not ‘recreating the wheel’

• White Paper• End of Life Care Strategy• End of Life Care Programme• Examples - Wisdom Hospice, Coordinator role,

Nottingham, Hospice at Home, Cornwall• *But no costing, detailed service models on

which to base commissioning and HRGs*


Questionnaire• Overall gaps in palliative care services for

people with LTNC were perceived by 94% of palliative medicine consultants, 75% of neurologists and 79% of rehabilitation consultants.

• Access • Good practice and links between services

were seen as adhoc


Older People Policy Group

• The characteristics of palliative care needs of older people

• Looking beyond health and social care to housing

• Care homes, Community Hospitals• Creative approaches to user involvement• Dementia discussion document– service

needs; service models• Dementia event 19 October 2006, London


Key messages

• Future in educating, empowering and linking to each other

• Developing shared care models for the future

• Does not mean large scale expansion of specialist palliative care delivery


To Know More:

• Contact me at [email protected]

• Telephone: 020 7697 1520

• Website www.ncpc.org.uk

• Sign up to E-News

• To receive all that the Policy Unit

produces, subscribe to National Council

developing palliative care support

Documents