Select Committee on Health Written Evidence


APPENDIX 41

Memorandum by the Parkinson's Disease Centre of the United Kingdom (PC 61)

1.  ADVANCED/PALLIATIVE STAGE PARKINSON'S DISEASE

  Parkinson's disease is a progressive neurological condition which is recognised as having five stages: pre-diagnostic, diagnostic, maintenance, complex and advanced/palliative. Each stage has different management strategies and different challenges not just for the professionals but also primarily for those living with the condition. Parkinson's Aware in Primary Care, published by the PDS provides a summary of each stage.

2.  ADVANCED/PALLIATIVE STAGE ISSUES IDENTIFIED IN THE PDS STUDY

  The Society will shortly publish the findings in full from a major research study conducted over the last 18 months. It is clear, however, that some important issues have been identified in the study:

    —  Lack of information for both patients and carers: "you become invisible", in the words of one respondent.

    —  Lack of specialist input at the advanced stage. The common theme reported by respondents is: "we cannot do any more for you" which means that families are left to cope without access to specialists or to therapists.

    —  The wishes of patients regarding care and support at home are not being met.

    —  There is also evidence showing that carers' needs being met.

    —  Further, the lack of provision of adequate care at the right time for the patient and carer eg "Tuck in services" which may be limited to 45 minutes twice a day and do not meet needs or medication timings.

    —  Inadequate feeding advice, poor PEG feeding regimens.

    —  No access to hospice services for the overwhelming majority of people because the condition is not malignant and is not viewed as terminal.

3.  WHAT ARE THE COMMON SYMPTOMS FOR PEOPLE WITH PARKINSON'S AT THE ADVANCED/PALLIATIVE STAGE?

  People with Parkinson's in the advanced stages of Parkinson's will experience deteriorating function that may include:

    —  Increased immobility and slowness with increased risk of falling.

    —  Bowel and bladder problems—including constipation and incontinence.

    —  Increased communication difficulties—resulting in withdrawal from activities and social life.

    —  Low blood pressure—increases the risk for falling.

    —  Swallowing problems—which may lead to weight loss and malnutrition if not treated. These can also affect compliance re medication.

    —  Sleep and nocturnal disturbances.

    —  Difficulties with drug treatment including side-effects such as motor fluctuations and hallucinations.

    —  Depression and anxiety.

    —  Confusion and fear.

    —  Dementia.

  It has been noted that these symptoms frequently mirror those of patients with malignant conditions receiving palliative care.

4.  ISSUES REGARDING CARE COSTS AND SUPPORT FOR CARERS

  Care needs and costs increase significantly at the palliative stage, as does the burden on the carer.

  Key issues identified in the Study include:

    —  Major anxiety regarding paying for care and the process of gaining an assessment of needs;

    —  availability and quality of local respite care services;

    —  availability and quality of residential/nursing home care;

    —  hospital admission and the management of Parkinson's symptoms;

    —  provision of adequate levels of care at home with health and social care professionals working together as an integrated, multidisciplinary team; and

    —  support for the carer's needs.

5.  FURTHER FINDINGS FROM THE STUDY

  The Study drew on evidence provided from more than 252 questionnaires and detailed interviews conducted with people with advanced stage Parkinson's or who cared for someone at the advanced/palliative stage. The evidence gathered in the Study shows the impact of a range of symptoms that has a very damaging effect on quality of life for the individual and a severe impact too on the carer.

  Further, the Study shows that access to care and therapists remains extremely uneven:

    —  1 in 5 respondents had not had access to a physiotherapist.

    —  1 in 4 respondents had not had access to an occupational therapist.

    —  More than 1 in 3 respondents had not had access to a speech and language therapist or a podiatrist.

    —  More than 1 in 4 respondents had no access to a social worke.r

    —  Some 59% of carers reported that they spend most or all their day caring.

    —  Around 80% said they had uncertainties of how to care.

    —  59% of carers reported health problems from their caring role and 71% said that it had an affect on their emotional and mental state.

6.  THE PARKINSON'S DISEASE SOCIETY OF THE UNITED KINGDOM

  The Parkinson's Disease Society is a national charity established in 1969 and now has some 29,000 members in the UK and more than 300 branches and support groups across the country. The Society aims to be a leading neurological charity serving all people with Parkinson's and pursues three primary objectives:

    —  To help people with Parkinson's and their carers and families by providing support, advice and information.

    —  To collect and disseminate information on Parkinson's disease and its impact for people living with the condition and for the health and social care professionals who provide care, treatment and support.

    —  To encourage and provide funds for research into Parkinson's.

  The PDS is the only UK charity dedicated to helping people affected by Parkinson's. It is funded almost entirely by voluntary donations.

References:

  (PK Morrish 1997, Parkinson's disease is not a long-latency illness. Movement disorders; 12 (6)849-54)

  (Clarke CE, "Parkinson's Disease in Practice", The Royal Society of Medicine Press Ltd, 2002, ISBN 1 8531 5486 5))

  (Quinn N (editor), "Parkinsonism", Balliere's Clinical Neurology, Balliere Tindall, 1997)

  (Zhang ZX, Roman GC, "Worldwide Occurrence of Parkinson's Disease: An Updated Review", Neuroepidemiology 1993, 12 (4) 195-208)

  -www.parkinsons.org.uk

  (Parkinson's Aware in primary care. 2003 Parkinson's disease Society Primary Care Task Force. PDS London).

  The PDS Information Sheets on Care, Communication, Swallowing, Choices for Care, Going into hospital are all available on the "Living with Parkinson's" section of our Web—www.parkinsons.org.uk

  A glimpse into the latest research on Parkinson's disease Melton L British Library and PDS Science in Progress SP1, 2004.



 
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Prepared 26 July 2004