Select Committee on Work and Pensions Written Evidence


Memorandum submitted by The Parkinson's Disease Society

1.  THE PARKINSON'S DISEASE SOCIETY

  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 DISEASE

  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 FOR PEOPLE WITH PARKINSON'S DISEASE IN THE WORKPLACE

  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.[31]

  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 uncoordinated manner.

  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.

4.  PARKINSON'S DISEASE SOCIETY VIEWS IN EMPLOYMENT ISSUES

  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"[32] 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 the workplace.

  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 CONCERNS OF THE PDS

  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 Parkinson's disease.

    —    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 TO SPECIFIC QUESTIONS POSED WITHIN THE WORK AND PENSIONS COMMITTEE INQUIRY

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.

Assessment

  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 in.

  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 of work.

Health professionals

  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 work.

  The Society has recently surveyed members regarding employment and many participants in the Society's Employment Survey[33] 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 work fails.

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 mental health.[34] 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 Parkinson's Disease

  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%.[35] 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 over 80%.[36] 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.[37] 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 employment.

Claire Moser

3 October 2005




31   Parkinsonism, Balliere's Clinical Neurology, Quinn N, 1977. Back

32   Parkinson's disease and Employment, the Employment study, published by the Parkinson's Disease Society, May 2004. Back

33   "Parkinson's disease and Employment", the employment survey published by the Society, May 2004. Back

34   Pathways to work-Helping People Into Employment, Department of Work and Pensions, November 2002. Back

35   Parkinson's disease: Studies in psychological and social care, Ray Percival and Peter Hobson, 1999. Back

36   Parkinson's disease: Studies in psychological and social care, Ray Percival and Peter Hobson, 1999. Back

37   Time To Make A Difference, Parkinson's Disease Society's Election Manifesto, May 2005. Back


 
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