DMH 295 Memorandum from the Parkinson's
Disease Society
215 Vauxhall Bridge Road, London SW1V 1EJ
Tel: 020 7931 8080 Fax: 020 7233 9908, 020 7963
9360 www.parkinsons.org.uk
The
Parkinson's Disease Society
1.1 The Parkinson's Disease Society (PDS) was established
in 1969 and now has 30,000 members, 19,000 supporters and over 300
local branches and support groups throughout the UK.
1.2 The
Society provides support, advice and information to people with
Parkinson's, their carers, families and friends, and information
and professional development opportunities to health social services
and care professionals involved in their management and care.
Each year the Society spends more than £2 million on
funding research into the cause, cure and prevention of Parkinson's,
and improvements in available treatments. The Society also develops
models of good practice in service provision, such as Parkinson's
Disease Nurse Specialists, community support, and campaigns for
changes that will improve the lives of all people affected by
Parkinson's.
About Parkinsons disease
2.1 Parkinson's disease is a progressive neurological
disorder. It affects all activities of daily living including
talking, walking, communication, swallowing and writing. It is
estimated that 120,000 people in the UK have Parkinson's, with
the cause still unknown. That is one in 500 of the general population.
Approximately 10,000 people are newly diagnosed with Parkinson's
each year in the UK.
2.2 Parkinson's
occurs as a result of a loss of cells that produce the neuro transmitter
dopamine. Dopamine is one the chemical messengers that we have
in the brain which enables people to perform co-ordinated movements.
As yet it is not known why these cells die.
2.3 The three main symptoms are tremor, muscle rigidity
and slowness of movement. However not everyone will experience
all three. Other symptoms include a lack of facial expression,
difficulties with balance, problems with an altered posture, tiredness,
speech difficulties, pain and depression. Parkinson's affects
people from all ethnic background and all ages. The majority
of people are diagnosed over the age of 60, however it is estimated
that one in 20 people are diagnosed Parkinson's under the age
of 40.
Summary
As 'mental disorder' has been defined so broadly
in the Bill the Society believes that people with Parkinson's
and other neurological conditions may be subject to its regulations.
The definition therefore, must be coupled with tight criteria
for the use of the compulsory powers outlined in the Bill. People
with Parkinson's may experience one or all of three conditions
affecting their mental health - psychosis, dementia and depression.
The Society believes that for anyone with Parkinson's to be treated
under the Bill, the treatment must be necessary in line with the
conditions in the Bill and to address the person's psychiatric
symptoms. It is essential that any assessment and treatment is
conducted by a specialist in Parkinson's and that regular consultation
is made with a Pd specialist team throughout the course of treatment.
Of particular importance in treatment is the interaction between
Pd medication and neuroleptics as these drugs are well documented
as heightening the symptoms of Parkinson's.
We are therefore in favour of a 'Best Practice' guideline
being developed for the treatment of the mental health aspects
of neurological disorders - including the joint management of
mental health symptoms by both neurological and psychiatric health
professionals.
Finally the Society is concerned that there needs
to be in place quality mental health services which have the capacity
to treat people with mental health conditions -in particular we
support the use of Crisis Resolution Teams to be extended to neurological
conditions.
4. Parkinson's and Mental Health
4.1 Mental health is a very important and
sometimes overlooked aspect of Parkinson's disease and its management.
Although not all people with Parkinson's experience mental health
problems, deteriorating mental health is often associated with
the advanced stages of Pd. The three most common conditions that
people with Parkinson's experience are psychosis, dementia and
depression. One challenging and often misunderstood feature of
Parkinson's is the fluctuations experienced by those diagnosed.
These occur without any pattern within a day. It is important
that any mental health professional dealing with a person with
Parkinson's has an understanding of the disease, the fluctuations
in a person's condition and the interactions between medications.
4.2 Psychosis, though it can occur at any stage of the illness,
is particularly prevalent in the complex and advanced stages of
the disease. In comparison to psychosis with a psychological
origin, Parkinson's related psychosis results in more visual hallucinations
and sleep disturbances. Disruption of thought processes and delusions
are less common. Psychosis is often caused by underlying dementia
with Lewy Bodies or as a result of the person's Pd medication
- the latter being a much more common cause of psychosis. When
such symptoms develop, the accepted first step is to reduce anti-Parkinsonian
medications were possible. However there are currently no clear
guidelines on the treatment of psychosis in Parkinson's.
4.3 Dementia occurs in 15-20% of Parkinson's cases and the treatment
of dementia is a specialist area that requires involvement of
a team with expertise in treating both Parkinson's and dementia.
Dementia symptoms in Parkinson's can be exacerbated by side effects
of the anti-Parkinsonian medication, so sometimes reducing the
drug dose or withdrawing a drug may help, particularly with problems
such as hallucinations. However a reduction in the dose or the
withdrawal of some drugs may result in the symptoms of Parkinson's
being less well controlled.
4.4 Finally problems with mood and depression are
common in people with Parkinson's and many will experience a degree
of depression at some time during the course of their Parkinson's.
Though recent studies suggest that 'major depression' is only
slightly more common in Parkinson's than in people without Parkinson's
of the same age, as many as 30-40% of people with Parkinson's
may experience significant feelings of depression at some point
during the course of the condition. Currently depression, often
mistaken for the lack of facial expression inherent in the disease
process, is under-treated and again there are no clear guidelines
on the management of depression in Pd. Treatment options include
counselling, anti depressant drugs and in extreme depression,
electroconvulsive therapy - though this is rare and not widely
accepted as a treatment of choice.
5. Concerns with the Draft Bill
5.1 The PDS is particularly concerned with the definition
of mental disorder and the conditions for treatment and care under
compulsion. We share the concerns of the Joint Committee on Human
Rights that the definition of mental disorder is so widely drawn
that it could cover conditions such as Parkinson's or other neurological
conditions as these can interfere with brain functioning. We therefore
believe that such a broad definition of mental disorder must be
coupled with tight criteria for the use of compulsory powers on
the face of the Bill, and in accompanying Codes of Practice and
guidance for professionals and those working in mental health
services involved in implementing the Bill.
5.2 The provisions of the Bill must clearly set out
that simply having a diagnosis of Parkinson's disease or another
neurological condition will not automatically mean a person can
be treated under the legislation and that only where there are
severe psychiatric symptoms which require treatment to protect
the person or others can someone be treated under the Bill.
5.3 In cases where Parkinson's Disease is the primary
neurological condition in a person displaying mental disorders,
assessment by a specialist in Parkinson's is the most appropriate
first line of treatment. The Bill and its accompanying guidance
should reflect this clinical pathway. It should also direct that
mental health professionals should regularly and routinely consult
with the Pd specialist team throughout the course of psychiatric
treatment. See paragraph 5.5.
5.4 The most important practice point in the management
of a person with Parkinson's, with a mental disorder, is caution
in or preferably avoidance of, the use of neuroleptic medications
that are the mainstay of anti psychotic treatment in other patient
groups. These drugs are well documented as heightening the symptoms
of Parkinson's.
5.5. We are therefore in favour of a 'Best Practice'
guideline being developed for the treatment of the mental health
aspects of neurological disorders - including the joint management
of mental health symptoms by both neurological and psychiatric
health professionals. For both psychosis and dementia in Parkinson's
there are no such guidelines for clinicians. We would also recommend
that in addition to the support given by Parkinson's Disease Nurse
Specialists, a key health professional in such joint management
should be an occupational therapist specialising in neurology
who can therefore provide a combination of knowledge in neurology
and community psychiatric treatment.
5.6 Finally the Society is concerned that there needs
to be in place quality mental health services which have the capacity
to treat people with mental health conditions regardless of whether
the conditions or treatment are covered by the Bill. We are keen
that services such as Crisis Resolution Teams providing 24-hour
emergency support, development of crisis house provision, intensive
home help and out of hours social support should be widely available
to those in need of mental health support. There is growing evidence
that this approach is having the earliest and greatest impact
on service quality, effectiveness and efficiency. While these
teams were not originally set up to cater for brain damage or
other organic disorders including dementia, the evidence suggests
that this specialist approach would benefit people with Parkinson's.
It is vital that once a person with Parkinson's has been identified
as needing mental health support, the services provision is available.
References:
Playfer J R and Hindle J V Parkinson's Disease in
the Older Patient, Arnold Publishing 2001.
Clarke C Parkinson's Disease in Parkinson's Disease
in Practice, Royal Society of Medicine Press, 2001.
Wint D P, MD, Okun M S, MD, Fernandez H H, MD,
Psychosis in Parkinson's Disease, Journal of Geriatic Psychiatry
and Neurology Vol. 17, No. 3, September 2004.
Parkinson's Disease Society Information Sheet 56
Depression and Parkinson's, Updated May 2004-10-29
Parkinson's Disease Society Information
Sheet 58 Dementia and Parkinson's, Updated March 2004.
Parkinson's Disease Society Information Sheet 38
Drug Induced Parkinsonism Updated March 2004.
Submitted by the Parkinson's Disease Society of the
United Kingdom on 1st November 2004.
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