Written evidence from Emily Bedford (PEA0221)

1. I am a community outreach support worker for the National Autistic Society in Bristol and South Gloucestershire. . I support adults with Asperger’s Syndrome (Autism), learning difficulties, OCD, ADHD, depression and anxiety. I have supported several people to fill in their PIP forms, as well as DLA in the past and have attended their medical assessments with them.

2. I think the first and foremost thing for the government to understand is that a lifelong health condition is just that! It isn’t a short term illness which may change within a year or two and need to be re-assessed time and again. Autism is a difference in the development of the brain which people can learn to cope with, in some cases, so that they can try to lead some semblance of an ‘ordinary’ life. However, it takes an enormous amount of energy to interpret, understand and find a place in society. Similarly, a learning difficulty is also something that may be overcome to an extent growing up, but it is fundamentally the inability for the brain to interpret, understand and retain information, resulting in them needing lifelong care and support.

3. As a result of a lifelong, long term or chronic mental or physical illness, people become depressed and anxious and worry about their future. The experience that I have seen of the whole PIP assessment process is that it is extremely worrying and stressful for the persons I support. With constant cuts to welfare and benefits, they live in constant fear that they will lose these and be forced to work, be unable to cope as a result and end up destitute.  This is often how people with physical or mental health issues become homeless.

4. The forms themselves are daunting, as there are too many pages to them. Not everyone can read or write well enough to tackle it and not everyone receives the support they need. The thought of filling in a long form when you are struggling to cope with day to day living is often too much. On top of that, most people have read or heard the news from others about how many of the applications are turned down and have to be appealed. This puts people off even more. As a result, many people who would qualify for PIP will not even apply for it. If you are depressed and anxious, the fear of the application being rejected and having to appeal is too great.

5. People who have a diagnosis of ADHD, OCD or Autism find it hard to know what to write because they pay an incredible amount of attention to detail. They become so stressed by the thought of something being worded incorrectly, missing something out or not being explained well enough, that they lose focus of the form as a whole. It takes a lot of energy for them to sit down and put it all together and it can be difficult to focus at all for that length of time. Many people find it hard to organise their time and prioritise and filling in the form can seem like an insurmountable task.

6. For example, I supported a woman with chronic pain due to a broken back, as a result of a physically abusive relationship. She was also obsessive about detail, depressed and anxious. Although she had support, she was unable to complete and submit the form for 6 months after the deadline, because she believed she had to write pages and pages to explain herself or her claim would be rejected. Similarly, a man I supported, who has OCD, ADHD, Asperger’s, depression and anxiety was unable to focus on tasks for long periods and was also convinced he had to write in great detail or he would be turned down.

7. The face to face assessment makes many people feel embarrassed, stupid worthless and upset. Not only do they have to fill in the form about all for their failings in life, they now have to sit through an interview and prove it. This is particularly harrowing for people who have PTSD or have suffered any kind of abuse or trauma (which applies to many disabled or mentally ill persons) as they have to retell and relive it time and time again.

8. One problem with the process is that the assessor and the decision maker are not the same person. On paper, many of the adults I support come across as intelligent, articulate, capable people. However, day to day they lack the ability to focus, struggle with the concept of time keeping, have problems with executive functions (organising, priotising etc), cannot cope under pressure, may be meticulous, literal and obsessive, have problems remembering things and sequencing and lack social understanding. The only reason they are doing as well as they are is because of the support they receive.

9. I support a man in his 60s who lives with his older brother in their childhood home on the border of Bristol and South Gloucestershire. Both men are autistic and have a learning disability.  The elder brother has not left the house in 11 years and only speaks to his brother.  They both received an invitation to a PIP assessment in Weston Super Mare. This is 31 miles away. I called up with him to get it moved and he received a new invitation to Gloucester, which is 36 miles away. He was told on the phone that is could only be changed once. I called up again and explained and he finally got an appointment in Bristol (7 miles away).

10. I attended the interview with him and he answered the questions to make himself look as capable as possible, because he is proud of his achievements. Many people I support like to please others by telling them what they think they want to hear and do not want to be a disappointment or to feel like they are any bother.  Some don’t feel worthy of other people’s time. To the decision maker, what they see on the page is what they base their decision on, however, it does not always tally up with what the person is actually like on a daily basis. 

11. Another man I support is 30. He weighs 36 stone and has Autism, PTSD, a binge eating disorder, asthma and diabetes. He binges to cope with trauma that he suffered in his youth. He used to work at a supermarket and drive his own car, but as his health deteriorated he was no longer able to work. As a result, he became depressed and more obese to the point where he could not drive his car. He applied for PIP and after the assessment he was not awarded the highest rate of mobility, even though he cannot walk more than a few hundred meters without stopping. He had to appeal the decision and won.

12. All of the people I have ever supported would like to work and lead a straightforward life, but the odds are stacked against them, despite the schemes that have been offered by the government. It is difficult enough for people without disabilities, with consistent work histories and good CVs to find and stay in work. Finding a suitable job is enormously stressful work people who have metal health issues or a history of them.  They fear that they will not cope with the stresses of work and will lose their job and their benefits.

13. The benefit system should be there to help those who need it, but claimants are made to feel that the application process is there to ensure they get as little as possible. The questions are geared towards ‘rooting out scammers’, rather than finding out whether the person really is ‘fit for work’.  The real question for the assessors and the decision makers should be ‘would I employ this person?’ And the next question should be ‘what job are they suitable for?’

14. The workplace has changed a lot over the years. Most jobs focus on performance or sales targets and customer service. Automation such as self-serve checkouts has decreased the amount of unskilled jobs available. Where a person may have been able to perform a repetitive, menial task in the past, we now have robots and computers. Even someone who is literate and has basic maths skills (probably not used since school) is faced with a cash register that has 20 flashing lights and buttons or is touch screen. Even this is no longer simple.

15. The society we live in is fast paced and stressful. People are always in a hurry and are often highly strung in their own busy lives. They lack the patience to wait in line for more than a minute. Have you noticed that the first words that are said to customers at the till are ‘thanks for waiting’ or ‘sorry for the wait’? Since when do we need an apology for waiting in line?  How is a person who needs to take their time to learn a new skill or who has social anxiety supposed to succeed in this environment?

16. So, to summarise:

17. Persons with lifelong health conditions should not be put through the application and assessment process time and time again. Their condition will most likely NEVER change to the extent to which they will no longer qualify for PIP or be able to work full time.

18. Claimants would like to work. If they feel able to do so, they will be HAPPY and PROUD to be able to earn their own money and be part of society. There are very few fraudsters.

19. Just because someone comes across as intelligent, articulate and capable for the length of an assessment does not mean they would be able to cope with the challenges of finding and holding down a job. It has taken a lot of support and energy for them to present themselves well to the assessor. There is also a high risk of a relapse.

20. People have good and bad days. To be able to work in any capacity, you need to be reliable and consistent. An employer is not going to be flexible enough for someone to call in and say ‘I’m sorry, I’m having a really bad morning, I can’t cope with work today’. The hour at assessment will probably leave them drained for the rest of the day, if not longer. You are not seeing them at their worst or even on an average day.

21. IDEAS for solutions:

22. Joined up systems. Why do people need to bring evidence of medication and diagnosis EVERY time they are assessed? A Drs letter costs money, for a start… Surely once a person has applied, their details should be stored on the system? As stated before, lifelong conditions don’t change much.

23. Ask the care providers for information. We all work in line with processes and procedures that use person centred planning. We create a profile of everyone we support to ascertain their care needs. We can provide you with an accurate measure of what they are capable of and even what they are working towards achieving. Similarly, social workers do a care assessment. This also assesses their abilities and needs.

24. The form should be a lot shorter. The measurements used (walking distance, climbing stairs, standing, sitting etc) should be extended. Just because a person can walk to the bus stop or from the car park to the assessment centre on that particular day doesn’t mean that they could do so every day. It doesn’t mean they would be able to find or hold down a job. Just because someone can walk and talk and stand and sit doesn’t mean they can get to work on time, independently each day.

25. The form focuses too much on the physical aspects. The physical questions can be answered at the face to face assessment. Most of the challenges faced by the claimants are mental ones – depression, anxiety, ADHD, OCD, Schizophrenia,  Asperger’s, Learning difficulties, chronic fatigue, chronic pain. They are all invisible illnesses. They are complex and intertwined.

26. The interview should allow the assessor to create a profile of the person who is presenting – what is their speech like? Do they slur or stutter? Are they anxious? Are they rocking, wringing their hands, biting their nails? Are they bathed, wearing clean clothes? Are they dressed appropriately for the weather? Do they look eccentric? Can they make or hold eye contact? Do they look tired or stressed? Do they have side effects from medications? Are they coherent? Do they use complex or simple language? All of this will enable to the decision build up a more complete picture of the claimant on which to base their decision. I did note that at the recent assessment, there was a question designed to test a persons’ short term memory. This is a step in the right direction.

27. There should be more assessment centres and they need to be more local to claimants.

November 2017