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.
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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