Memorandum submitted by

The Parkinson's Disease Society (DM 30)


We welcome the opportunity to submit a Memorandum of Evidence to this Inquiry.


1. Summary


We would like to highlight the following areas for particular attention:

Poor understanding of the complex and fluctuating nature of Parkinson's leads to mistakes - decision makers should have a basic level of training about the condition

Because they are non means tested the decision making process for DLA and AA is relatively transparent and clear - if the claimant can demonstrate sufficient incapacity they will get benefit

The decision making process for ESA is highly ineffective and is unclear to claimants

More time needs to be allocated for medical assessments for complex conditions such as Parkinson's

Apparent regional variations in ESA decisions should be investigated to ensure consistency of decision making process across the UK

ESA decisions must not just be based on medical assessments and should properly reflect the evidence within medical notes


2. About the Parkinson's Disease Society


2.1 Parkinson's Disease Society (PDS) was established in 1969 and now has 30,000 members and over 330 local branches and support groups throughout the UK. It provides support, advice and information to people with Parkinson's, their carers, families and friends. It also provides information and professional development opportunities to health and social services professionals involved in their management and care.


2.2 This year, the Society is expected to spend 4 million on research into Parkinson's Disease. 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 people affected by Parkinson's.


About Parkinson's Disease


2.3 It is estimated that 120,000 people in the UK have Parkinson's. Parkinson's is a progressive, fluctuating neurological disorder, which affects all aspects of daily living including talking, walking, swallowing and writing. The severity of symptoms can fluctuate, both from day to day and with rapid changes in functionality during the course of the day, including sudden 'freezing'.


2.4 Parkinson's affects people from all social and ethnic backgrounds and age groups. The average age of onset of Parkinson's is between 50-60 years of age, though one in seven will be diagnosed before the age of 50 and one in 20 will be diagnosed before the age of 40.


Evidence base


2.5 Evidence from the PDS members' survey published last year[1], which was completed by 13,000 people, showed that 82% of people with Parkinson's were reliant on benefits and/or pension; including 10% on Incapacity Benefit, 41% on Attendance Allowance and 30% on Disability Living Allowance. Nearly a third of people with Parkinson's reported that they were 'just getting by' or 'getting into difficulties with' their finances.


2.6 The PDS has a network of 120 local Information and Support Workers, now in place in nearly every area of the UK, who provide information and advice to people with Parkinson's and their families and assist those than need help in completing forms. Our Information and Support Workers helped people with Parkinson's and their carers make benefit claims worth 2.5 million during 2008.


2.7 The PDS does not represent clients in appeals, so our evidence is based mainly on feedback from our Information and Support Workers and Helpline staff who have assisted and advised people, data from our members' survey[2] and findings from a survey of people claiming Employment and Support Allowance (ESA).

Issues and evidence


3. Are there sufficient numbers of decision makers and is the training they receive adequate?


3.1 Long waits for decisions are a common complaint, which would suggest that there are insufficient decision makers, though we have no further evidence to support this.


3.2 Many claimants tell us that their assessor had a poor understanding of Parkinson's, often meaning that they misunderstood or overlooked a key symptom of their condition. Common problems include a failure to understand the fluctuating nature of the condition and the mental health symptoms associated with Parkinson's.


3.3 Whilst it would be unreasonable to expect decision makers to have expertise on every condition and disability, complex and fluctuating conditions such as Parkinson's are more likely than others to be misunderstood and there is a strong case for ensuring a basic level of training about the condition and about neurological conditions generally.


3.4 Monitoring of successful appeals would be one way to identify those conditions where mistakes are more likely to be made in first instance and this may be one way of targeting training most effectively.


How effective is the decision making process? Could it be improved, if so how?

How well does the decision making process operate for different benefits?

4. Disability Living Allowance and Attendance Allowance


4.1 AA and DLA are popular benefits amongst our membership. One of the main advantages of these benefits is that it is clear what people will get if they meet the criteria. Because they are non means tested the decision making process is transparent and clear - if the claimant can demonstrate sufficient incapacity they will get benefit. There is no confusion over their amount of savings, wealth, income, or national insurance contributions and there are clear national benefit rates that they will receive to meet their needs.


4.2 Given the range of disabilities and variations in individual symptoms, decisions regarding Attendance Allowance and other disability benefits can never be an exact science. However, feedback from our Information and Support Workers does highlight inconsistencies in the decisions relating to different clients that could be avoided if staff were trained to better understand Parkinson's.


4.3 DLA and AA are both largely successful in getting extra money to people that need it. One of the main reasons that such a high proportion of our members have successfully claimed DLA or AA is that they are able to appeal if they believe that the decision is wrong and to reapply if their condition deteriorates. However, addressing error in the initial decision making would save the cost and inconvenience of many appeals.


"I receive the highest rate of allowance, but had to appeal twice...However I don't think there's a limit to the number of times you can appeal, so keep going until you wear THEM down!" Person with Parkinson's

5. ESA

5.1 Initial feedback from people with Parkinson's claiming the new benefit, indicates that the decision making process is highly ineffective and leaves many people who have considerable physical and mental disabilities being placed in the Work Related Activity Group, and in many cases onto Job Seekers Allowance.


5.2 The decision making process relating to ESA is unclear to claimants, which may partly be explained by staff still learning about the new benefit, or by claimants confusing ESA with its predecessor Incapacity Benefit.


There are a number of common concerns expressed with the process:


5.3 Lack of time for the medical assessment - Claimants state that the medical assessor did not allow them time to properly answer the questions. This is likely to have a disproportionately negative impact on people with complex and fluctuating conditions such as Parkinson's, who are likely to need more time to discuss the wide range of symptoms and the fluctuations in those symptoms. This problem is exacerbated by a general poor understanding of the condition, which means that the assessor does not understand the combined impact those symptoms are likely to have on the person's ability to work.


5.4 Medical notes and reports from specialists are not properly taken into account in decision - Feedback from ESA claimants with Parkinson's suggests that decisions are made based on how the person presents during the medical examination, with scant regard to their medical notes and the opinion of specialist consultants involved in their care, meaning that people with fluctuating conditions such as Parkinson's are often wrongly assessed.


5.5 Parkinson's symptoms fluctuate during the course of a day, depending upon when their medication was taken and similar factors, symptoms can also fluctuate from day to day, meaning that someone who is mobile one day can have great difficulty moving and many other complications the next day. It is essential that proper consideration is given to the medical notes so that these fluctuations can be properly taken into account.


"He felt reasonably well at the time that his Work Capability Assessment (WCA) meeting started. However, he says that if it had started at a different time of the same day, the results/points would have been quite different, and his entitlement to ESA would not be at risk." Information and Support Worker


5.6 The mental health elements of Parkinson's are frequently overlooked. It is unclear whether this is due to poor understanding of the condition, or the time pressures discussed above that prevent detailed discussion of both mental and physical symptoms, though both are likely to be factors. Improved training and increased time for assessments would be sensible adjustments to address this.


5.7 Apparent regional inconsistencies in decision making - Initial feedback from our network of Information and Support Workers, suggests that there are stark variations in how Employment and Support Allowance is applied across the country. One Information and Support Worker has supported three people to claim the benefit, all were unsuccessful, despite serious disabilities in all three cases. Recent media reports have stated that 90% of ESA claimants were turned down in some areas, which suggests that there are major regional inconsistencies in how ESA is applied. Unfortunately the data on which the media coverage is based are not yet in the public domain, but we would urge the Committee to investigate these regional inconsistencies.


"X was involved in a Road Traffic Accident where he sustained a Traumatic Brain Injury and afterwards PTSD (Post Traumatic Stress Disorder) - (ongoing).  He was diagnosed with Parkinson's within 2 years of the accident... He has all the usual symptoms of P.D. - freezing, slow and quiet speech, difficulty with swallowing, shuffling, poor balance, dribbling (mouth), accidents when he can't reach the toilet on time, he has difficulty getting in and out of bed, nightmares, needs help with personal hygiene, and assistance with getting dressed.. He was given NO POINTS and advised to join JSA at Jobcentre Plus."  Carer of person with Parkinson's


6. How could the decision making process be improved?


6.1 Employment and Support Allowance


More time needs to be allocated for medical assessments for complex conditions such as Parkinson's. Parkinson's has a range of symptoms, including both mental health and physical symptoms, which fluctuate in intensity.

Apparent regional variations in ESA decisions should be investigated to ensure consistency of decision making process across the UK.

Decisions must not just be based on medical assessments and should properly reflect the evidence within medical notes


7. How is the review stage of the decision making process?


7.1 Reviews can cause a great deal of stress to claimants. AA and DLA are essential sources of income that help people with Parkinson's and their families meet the additional costs that their condition brings. In many cases people don't know why the review is happening, this needs to be better explained to claimants.


7.2 Parkinson's is a progressive and degenerative condition, and if a person has been disabled and in receipt of AA or DLA for a long time it is sensible to assume that in the vast majority of cases the review should be found in their favour and it would be anticipated that many people on the lower rate would benefit from a review and be placed onto a higher rate, though this rarely seems to happen.


7.3 The PDS does hear from claimants with Parkinson's who have had AA or DLA for a number of years who have had this withdrawn following a review. Often, this decision is reversed following appeal.




8. How does the appeals system work from the claimant's perspective? Is the timeframe of appeals reasonable?


8.1 Appeals are daunting for claimants and the support available does vary across the UK. However, the appeal system does seem to work, in that many people with severe disability who have initially been turned down are able to reverse the decision.


8.2 Our Iinformation and Support Workers report a lack of transparency in evidence used to decline claims in some instances, i.e. if a GP has made a report the appellant should have the opportunity to make comments on that report. They also report a lack of consistency between decisions, with the reasons for refusal often inadequate and not case specific.


8.3 The long time taken for appeals to take place can be an unnecessary stress for claimants. This delay adds to the stress faced by appellants and makes it very difficult for them to manage their finances, given the uncertainty of the eventual outcome. Delays in appeals can lead to an added complication in relation to a degenerative condition, as it can become unclear whether claimant's current disabilities were presented at the time of the original claim.

September 2009


[1] Life with Parkinson's today - room for improvement, Parkinson's Disease Society, 2008

[2] Life with Parkinson's today, op cit