Developing Palliative Care Support for People with Parkinson

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Developing Palliative Care Support for People
with Parkinsons Disease

• Moving Forward Together
• Lucy Sutton
• National Policy Lead

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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)

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Causes of death
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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)
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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.

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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.

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Pd is it all palliative?

• Diagnosis
• Maintenance
• Complex
• Palliative

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... the early application of palliative care
principles is very relevant to Parkinsons
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 2003179S41-S43
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National Council
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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

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Changing This

• Good 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

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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

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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

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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

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To Know More

• Contact me at l.sutton_at_ncpc.org.uk
• Telephone [phone]
• Website www.ncpc.org.uk
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