Memorandum submitted by The Parkinson's
1. THE PARKINSON'S
The Parkinson's Disease Society (PDS) was established
in 1969 and now has 30,000 members, 23,000 supporters and over
300 branches and support groups throughout the UK.
The Society provides support, advice and information
to people with Parkinson's disease, their carers, families and
friends, and information and professional development opportunities
to health and social services 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 and campaigns for
changes that will improve the lives of people affected by Parkinson's.
2. ABOUT PARKINSON'S
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 idiopathic Parkinson's,
one in 500 of the general population. Approximately 10,000 people
are diagnosed with Parkinson's each year in the UK. Usually symptoms
appear after the age of 50 and the risk of getting Parkinson's
increases with age. However, of the 10,000 people in the UK diagnosed
each year, one in 20 will be aged under 40.
Parkinson's symptoms occur when there is a significant
loss of cells that produce the neuro transmitter dopamine. Dopamine
is one of the chemical messengers in the brain and it enables
people to perform coordinated movements. As yet it is not known
what causes these cells to die.
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 any ethnic background and any age group.
As the condition progresses, it becomes more
difficult to manage the complex range of symptoms and this can
result in an increased dependency on support from social services.
Assistance may be required in all activities of daily living,
to allow the person to maintain mobility and independence as far
as possible. Without this assistance and support the person will
become socially isolated and this will result in a further deterioration
in their quality of life.
3. THE PROBLEMS
The average age of onset of Parkinson's disease
is estimated to be around the age of 60, however one in seven
people are diagnosed before the age of 50 and at the time are
likely to be engaged in the workplace.
The onset of Parkinson's is insidious and in
the earliest stages the diagnosis is often difficult. While tremor
is the most common presenting symptom and is more noticeable when
people are under pressure, it may be absent and some individuals
present with other symptoms including fatigue, pains or muscle
cramps or feelings of tension and restlessness. Hypokinesis (literally
"reduced movement") include a number of components including
delay in initiation, imprecision and slowness of movement (bradykinesis)
fatigue and impairment of sequential actions. Thus there may be
hesitation in starting to carry out an action and the size and
the speed of the movement may be reduced or carried out in an
Parkinson's disease can result in a loss of
manual dexterity and consequent changes in handwriting and turning
the pages in a book or newspaper. People may experience problems
with defective enunciation and an impaired voice, but there are
also changes in the distribution of stress and intonation, which
comprise the melody of speech or prosody. The problems may result
in hesitant almost stuttering speech, enunciation is often imprecise,
words may come out in short rushes and impaired breathing control
may give a breathy voice quality.
The Parkinson's Disease Society welcomes the
differentiation between people with severe conditions who genuinely
cannot work and those with potentially more manageable conditions.
The PDS welcomes the commitment to encourage people to return
to work where possible and to give increased support to those
for whom work is not possible on health grounds.
The results of a Society-funded research project
"Parkinson's disease and Employment"
revealed that people with early stage Parkinson's disease who
are able to work need tailored, personalised support, and the
PDS supports programmes that enable people to remain in or get
back into the workplace.
Many younger people with Parkinson's find that
work makes a key contribution to their health and well-being.
The PDS supports the extension of the Pathways to Work scheme,
which provides early intervention and rehabilitation to Incapacity
Benefit claimants. The success of the Pathways pilots proves that
with a good package of support people can be helped back into
Employers should be encouraged to introduce
policies such as flexible working and adjustments to the working
environment to accommodate the needs of disabled employees. This
will result in important benefits such as the retention of staff
who have become disabled. For example, an assistive keyboard to
minimise the effects of tremor for people with Parkinson's can
enable them to continue at their workstation.
5. THE KEY
The PDS welcomes the reforms to the Incapacity
Benefit system, which will help people return to the workplace
and will provide financial security over the long term to people
with more advanced Parkinson's disease who are unable to work.
However, the Society does have a number of concerns:
People with "invisible"
impairments like mental health problems or with fluctuating conditions
are likely to be the worst affected by the proposals if these
impairments are not understood or recognised.
The assessment differentiating
between people as having a more manageable or a more severe condition
will be based on a medical assessment not by clinical condition.
The assessors may lack the knowledge
about the fluctuating and individual nature of Parkinson's disease,
which could result in the condition being misunderstood and wrongly
classified as "more manageable".
If an assessor incorrectly classes
a person as having more manageable symptoms of Parkinson's disease
then the stress of attending work focussed interviews can exacerbate
their Parkinson's disease and add to the stress and difficulty
in managing their condition.
If the individual feels too
ill to attend the work-focussed activities then this failure to
seek work will cut the payment to Jobseeker's allowance rate.
A dangerous amount of discretion
will be given to Jobcentre Plus staff who will make judgments
about whether someone is too ill to fulfil the work conditions.
Initially the changes apply
to new claims, but existing claims can be "recycled"
so that they come under the new rules.
6. THE PDS RECOMMENDS
That appropriate training in
Parkinson's disease must support the new role to be undertaken
by GPs and health professionals as assessors.
It is imperative that training
and clear guidance is in place to enable Incapacity Benefit Personal
Advisers (IBPAs) to decide which of the two benefits and packages
of support individuals should receive, particularly those with
progressive or fluctuating conditions, and to allow them to understand
the interactions between the condition and the medications.
That in the assessment, the
assessor has regard not only to the physical nature of Parkinson's
disease but also to the additional mental health problems that
a person can experience.
Directing people back into the
workplace after a period of unemployment caused by health problems
can be unsettling and many people may lack confidence and struggle
with a lack of stamina. It is clear that re-entering the labour
market requires effective support, understanding and encouragement
tailored to the individual.
That the approach needs to be
flexible; in particular, Incapacity Benefit Personal Advisers
(IBPAs) must be able to adjust the number of and the timing of
the mandatory interviews and a flexible attitude by senior officials
is required to the current targets for the numbers of people that
the IBPAs should place back into the workforce, in order to allow
adequate time for the assessment of complex conditions such as
There is a wide range of support,
such as occupational therapy and speech and language therapy that
needs to be in place before people with Parkinson's disease can
be enabled to return to a supportive work environment.
The Pathways to Work programme
should be extended to cover a greater percentage of the country.
An increase in both awareness
of and use of the Access to Work scheme to assist employers, to
ensure that people who are looking for work are not denied opportunities
on the basis of their condition.
7. PDS RESPONSE
7.1 Reforms to Incapacity Benefit
The dual structure of Incapacity Benefits
Some people with Parkinson's disease will be
able to and want to work and we are pleased that the focus of
the Incapacity Benefit will change to reflect people's desires
to both stay in and return to the workplace. This recognises people's
abilities and supports and empowers them to take charge of their
own life. However, some people with more advanced Parkinson's
disease regardless of age will be unable to return to work and
the Society are pleased that the "Disability and Sickness
Allowance" will provide financial security over the long
term and recognise the severity of their condition.
One challenging and often misunderstood feature
of Parkinson's disease is the fluctuations experienced as the
condition progresses. These can occur without any pattern both
within a day and from day-to-day. There is a real concern that
the assessors may lack the understanding about the impact and
the fluctuating nature of Parkinson's disease, which could result
in their condition being misunderstood and wrongly classified
as "more manageable". This would result in many people
with Parkinson's being placed into a stressful situation, compelled
to attend interviews and perhaps then penalised if they are unable
to take up paid employment.
The PDS is concerned that the mandatory requirement
of a work-focussed interview is managed sensitively. Consideration
should be given to appropriate training of those undertaking the
assessments, including disability equality awareness and DDA training.
There is a fine line between encouragement to work or think about
work and inappropriate pressure at what is already a difficult
phase in a person's life. Equally, those with more severe disability
excluded from the mandatory requirement should be able to opt
Further, the PDS is concerned that even those
assessed as having the most severe health conditions or impairments
will still be required to engage in some work focused interviews
and that they will also be encouraged to engage in return-to-work
activity wherever possible. This will add to the stress and difficulty
experienced by the most vulnerable group of IB claimants in managing
their conditions. The PDS would urge that those with more severe
health conditions should not feel coerced into work-focussed activities
which could exacerbate the impact of their condition and lead
to a loss of morale.
In addition changes to benefits must ensure
there is sufficient flexibility for people with fluctuating conditions,
such as Parkinson's to be able to work at a level appropriate
to them rather than an "all or nothing" system, which
penalises those only able to do a limited or intermittent amount
The PDS strongly recommends that appropriate
training in Parkinson's disease must support the new role to be
undertaken by GPs and health professionals as assessors. Knowledge
of a condition is vital if health professionals are to be able
to take a greater role in assessing a person's capability and
assisting them back into work. It is imperative that this training
is in place for the assessors to understand the interactions between
the condition and the medications and to make the correct judgements
in assessing a person's capability in assisting them back into
The Society has recently surveyed members regarding
employment and many participants in the Society's Employment Survey
reported that even their hospital consultants lacked insight and
experience in dealing with the complex symptoms experienced by
individuals with Parkinson's disease.
Specialist team and IBPA's
The PDS welcomes the introduction of a specialist
team, comprising of Incapacity Benefit Personal Advisers (IBPAs)
as well as Disability Employment Advisers. However, the Society
has concerns over compulsory work-focused activities, which could
leave people feeling under constant surveillance and at risk of
losing their benefits. Directing people back into the workplace
after a period of unemployment caused by health problems can be
unsettling and many people may lack confidence and struggle with
a lack of stamina. It is clear that re-entering the labour market
requires effective support, understanding and encouragement.
The PDS recommends senior officials adopt a
flexible approach to the current targets for the numbers of people
that the IBPAs should place back into the workforce, as the pressure
to reach targets may lead to people being prematurely directed
back into the labour market without adequate preparation and rehabilitation.
There is also a danger that direction back to work can create
a climate of fear leaving claimants at risk of taking an unsuitable
job. People thrive in an environment of support and encouragement
and the Society emphasises that the approach needs to be flexible
in particular, IBPAs must be able to adjust the number of and
the timing of the mandatory interviews.
Jobcentre Plus staff
The PDS welcomes with one important caveat the
considerable levels of discretion that the proposals give to Jobcentre
Plus staff who are making judgements whether individuals can fulfil
the work conditions. The caveat relates to the individual and
fluctuating nature of Parkinson's, which is difficult to understand
for non-specialists, and may result in poor judgement by staff
carrying out assessments. This underlines the need for staff to
receive appropriate training and support.
Access to Work
The PDS welcomes the need for increased involvement
and assistance by employers to help people stay in or return to
work. However, the PDS is concerned that the focus may shift primarily
onto Incapacity Benefit claimants and employers' involvement may
lose priority. In the "Parkinson's disease and Employment"
study only four out of 10 participants reported that their employer
had been supportive in helping them overcome difficulties related
to Parkinson's and only a very small number of participants received
support through "Access to Work". Both awareness of
and use of the Access to Work scheme to assist employers must
be increased to ensure that people who are looking for work are
not denied opportunities on the basis of their condition.
Other Income Benefits
Joining and completing training courses as a
first step to work should not affect people with Parkinson's entitlement
to benefits. Clear advice must be made available about the whole
range of financial implications of working and not working. Moving
into work from income support will mean a loss of a number of
pass-ported benefits such as free prescriptions, all of which
need to be taken into account when making a decision.
It is essential that the reforms to Incapacity
Benefit genuinely offer security to people with Parkinson's disease
who rely on Incapacity Benefit. Some people with Parkinson's disease
fear that their disability living allowance (DLA) will stop if
they begin work. For some people with Parkinson's disease a move
into work could be taken as a signal that their condition has
improved and trigger a review. The potential loss of DLA can be
a huge disincentive to return to work, particularly if people
are already worried about their ability to cope with paid employment.
Prior to considering a move back into work,
the linking rule entitlements must be clearly explained to the
individual and how to secure them. Re-instatement of benefits
under the linking rules must be prompt, so people need not fear
the consequences for their benefit income if their move back into
7.2 The Future Rollout of Pathways to Work
It is well documented that the longer a person
is out of work the greater is the decline in their physical and
The PDS welcomes the success of the Pathways to Work programme,
which offers comprehensive assistance to allow people to balance
work and their condition and demonstrates that with the right
support many people on Incapacity Benefit can move back into work.
The PDS would urge that this scheme is extended as widely as possible.
7.3 Mental Health Problems in People with
Mental health is a very important and sometimes
an overlooked aspect of Parkinson's disease and its management
for a significant proportion of people with Parkinson's. Evidence
indicates that mental health difficulties are associated with
one third of those living with Parkinson's disease. The three
most common conditions that people with Parkinson's experience
are dementia, depression and psychosis.
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.
Recent studies suggest that depression affects about half of all
cases, although reported frequencies vary from 20% to 90%.
Some of this variability is due to differences between hospital
and community cases, studies of individuals at different stages
of the condition and the diagnostic criteria for depression used.
The depression in Parkinson's disease is characterised by pessimism
and a sense of hopelessness, reduced drive and motivation and
increased concern with health.
Literature on the frequency of dementia and
cognitive impairments in Parkinson's disease varies from 10% to
The variation in diagnostic criteria used and patient selection
methods help to explain the differences. The treatment of dementia
is a specialist area that requires involvement of a team with
expertise in treating both Parkinson's and dementia.
Psychosis, although 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.
The PDS is concerned about the lack of specialist
support in many parts of the country for people living with mental
health conditions. It is vital that once a person with Parkinson's
has been identified as needing support for emotional or mental
health symptoms that the necessary support is provided.
7.4 Condition Management Programme
Parkinson's disease is a complex condition to
manage. People with Parkinson's disease welcome better provision
of information resources and programmes to promote control over
and self-management of their condition. For many people with Parkinson's
disease self-care initiatives are an invaluable source of information
and support in managing their Parkinson's, and improving control
over their symptoms, treatment and coping with their condition.
The PDS welcomes the condition management programme, which can
help people understand their Parkinson's and empowers them to
consider returning to work.
8. OTHER COMMENTS
The PDS emphasises the importance of developing
work retention strategies to prevent people leaving the labour
market in the first place. Early interventions are required to
stop people falling out of the labour market and effective mechanisms
to support people back into long-term work need to be developed.
It is extremely important that the reduction
in Jobcentre Plus staff and the number of offices do not increase
the difficulties in accessing offices in rural and in other areas.
It is important that clients are offered continued
support following placements, to tackle any emerging difficulties.
The PDS would welcome an investment in the number
of disability employment advisers. With the closure of the New
Deal for Disabled People in March 2006, it is essential that substantial
resources are invested into the Pathways to Work programme to
support the needs of people with Parkinson's disease who are seeking
3 October 2005
31 Parkinsonism, Balliere's Clinical Neurology, Quinn
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Parkinson's disease and Employment, the Employment study,
published by the Parkinson's Disease Society, May 2004. Back
"Parkinson's disease and Employment", the employment
survey published by the Society, May 2004. Back
Pathways to work-Helping People Into Employment, Department
of Work and Pensions, November 2002. Back
Parkinson's disease: Studies in psychological and social
care, Ray Percival and Peter Hobson, 1999. Back
Parkinson's disease: Studies in psychological and social
care, Ray Percival and Peter Hobson, 1999. Back
Time To Make A Difference, Parkinson's Disease Society's
Election Manifesto, May 2005. Back