Memorandum submitted by the Parkinson's
Disease Society (OP 12)
The Parkinson's Disease Society is pleased to
have an opportunity to put forward its views regarding the "Lessons
from the "One' Pilots". We welcome the commitment to
supporting people with disabilities and health conditions in employment
and have set out our detailed comments below based on the evidence
gathered by our small team of Welfare and Employment Rights advisors.
Parkinson's disease is a progressive neurological
disorder, which currently affects around 180 thousand people in
the United Kingdom. Although the majority of those who have this
disability are over the age of 60, as many as one in 20 is under
the age of 40 when diagnosed and one in 7 is under the age of
50 at diagnosis. Many of these are still trying to remain either
in full-time/part-time paid employment; because of the progression
of their condition others are now, however, unable to continue
in employment and are claiming or have an underlying right to
claim Incapacity Benefit.
3. THE PARKINSON'S
The Society is the only national charity which
works with and for people who have Parkinson's disease. A significant
part of our work is providing information, advice and advocacy
on welfare and employment rights through our national welfare
and employment rights service. This service gathers evidence and
it is this evidence that has been used in our response.
4. THE ONE PILOT
We have found considerable variations in their
effectiveness around the UK. In some areas there has been a voice
of approval the way in which ONE staff have responded to identified
needs. For example, the flexibility of an appointment time has
Many people with Parkinson's experience
periods of the day when as a result of a number of factors, movement
becomes either very difficult or impossible. When this happens
the person with Parkinson's will have no alternative but simply
to wait until movement ability returns, often at a reduced level.
This may take between 30-120 minutes. Therefore keeping an appointment
time can be extremely difficult when an individual is managing
such fluctuations in the condition.
Access for some people has not been
easy and trying to cope with limited space and confined areas
has not always been most helpful prior to an interview about work.
We strongly believe that these access issues must be addressed.
A person with Parkinson's may experience
a number of problems all of which are relevant to an interview
with a work placed adviser. These include:
Tremorwhich can often be quite
pronounced and may become very much worse when a person is tense.
Softness of speechwhen the
strength of the voice is suddenly affected by the disorder and
a person becomes almost impossible to hear and to understand.
Loss of mobilitywhen as the
result of a change in their condition a person may either become
either totally immobile or else reduced to a level of mobility
which is slow and very painful.
Lack of ability to writedue
to the nature of the disorder and the added tension (and embarrassment)
of trying to do this in a public place.
Swings and changes throughout the
day which can affect the ability of the person to respond to questions
at interviews. This will often be caused by the effect of medication
changes as many people are seeking to achieve an appropriate balance
from a number of drugs for their condition.
5. THE QUALITY
Again, the evidence from around the country
has shown wide variations. In some areas an adviser has taken
considerable time to listen to the interviewee and try and understand
the nature of problems that may be experienced either on a fairly
frequent level or at more irregular intervals. In other places,
however, the response has been less than helpful. Answers have
been expected which almost fit into a simplistic "yes/no"
category, and give no opportunity to expand upon the answer.
6. THE WAY
The majority of people with Parkinson's, of
whatever age, wish to continue to lead as full a life as possible
within the community wherever they can do so. Further, those who
have Parkinson's disease wish to continue to work for as long
as it is possible if they are of working age. The time does come,
however when decisions have to be made about gainful paid employment
and these can be painful and difficult decisions. It is at a time
like this that the support and understanding of other agencies
is most appreciated and welcome. We would like to propose the
following in our submission.
Reduce the 16 hours a week rule for
claiming Disabled Person's Tax Credit. For many people with Parkinson's
this would be seen as a very positive statement of support from
Government. Many wish to work but cannot always manage to complete
a 16 hour week and therefore are ineligible to make a claim for
Disabled Person's Tax Credit.
Raise the awareness of the needs
of People with Parkinson's by providing information and training
for staff who will be working in "Jobcentre Plus" from
April 2002. As a national organisation we are able to provide
information and advice which would be of help and benefit to staff
in understanding the complexity and fluctuations of Parkinson's
7. THE PERSONAL
This has been an issue of concern for a number
of people with Parkinson's. It has been reported to us on several
occasions that medical advisers are not giving a person undergoing
a medical assessment sufficient time to explain the affect of
the debilitating circumstances and fluctuations of the condition.
Frequently, misunderstandings appear to arise due to the unwillingness
of the examiner to listen to the evidence of the client. As a
result the evidence provided from a medical examination may not
fully reflect the level of support required for the person with
the disability. We believe our evidence suggests that wrong decisions
have been made on occasions for people with Parkinson's.
People with Parkinson's wish to continue to
make a contribution to the economy of the country through their
work placed experience. However, for that contribution to continue
we would hope that those who are responsible for the initiation
and staffing Jobcentre Plus from April 2002 will be aware of the
needs of those who have this condition and the possible effects
of its progression. For many, coming into and going out of the
benefit system on a regular basis is not the best way to enable
that person to make a contribution. We believe that a much more
realistic approach with less emphasis on meeting the requirement
rules and more personal support in the work place would be extremely
The DEAs are often the key worker with
whom a person with Parkinson's will have first contact. Many people
with Parkinson's have indicated disappointment that very little
information is available to help the adviser understand the needs
of the person with Parkinson's. The system does not seem able
to cope with the variance of the disorder. We are aware and sensitive
to the burden that is placed upon the Employment Service, of course,
and may be able to provide further training and information in
9. IN CONCLUSION
We trust that the information provided in out
response paper will be helpful. We thank the Work and Pensions
Committee for this opportunity. We are willing to submit further
information and evidence, which may be helpful to the Committee
in its future deliberations.
Director, Policy, Research and Information
8 October 2001