Select Committee on Work and Pensions Appendices to the Minutes of Evidence


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.


  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.


  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 been appreciated.

    —  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:

    —  Tremor—which can often be quite pronounced and may become very much worse when a person is tense.

    —  Softness of speech—when the strength of the voice is suddenly affected by the disorder and a person becomes almost impossible to hear and to understand.

    —  Loss of mobility—when 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 write—due 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.


  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.


  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 disease.


  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 helpful.


    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 this area.


  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.

Robert Meadowcroft

Director, Policy, Research and Information

8 October 2001

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