Written evidence from Name Withheld (PEA0201)

My experience of being turned down and ignored throughout the PIP process. In my experience, key points I would like to address in this document are as follows:

• The PIP system, throughout its entire process from consideration, mandatory consideration and beyond is making the lives of people with disabilities (both physical and mental) excessively stressful
• The assessments involved in the PIP process are biased and inadequate
• The irrelevance of much of the criteria in the assessments for PIP
• The system doesn’t take into account the needs of those with invisible disabilities or those disabled by society into account
• The lack of accountability and training on disability on behalf of those involved in the decision-making process
• Contrary to what it claims, the PIP system does not understand the modern concept of disability

My DLA ended in December 2016 after which I was turned down for Personal Independence Payment. From the start, I feel that the process of interview and decision-making has materially and deliberately sought to put my case in a bad light by a manifestly unfair and one-sided approach, starting with my initial interview and assessment. 

The report of the interview confirms the worst-case scenario of the interview that I and my father, who was present, were concerned about.  The interview focused time and again on matters which were irrelevant to my condition and my case, and thus wasted a hugely disproportionate amount of the time available in inappropriate talk and even more inappropriate filling in of the form.  We repeatedly said that whole lines of questioning were quite inappropriate, but the lady concerned made clear (politely but firmly, and we make no criticism of her manner whatsoever) that she had a process and checklist to go through and that she had no flexibility about doing so.  We specifically asked that she should make sure that what we were saying was recorded in her report and that it should be made clear in the report that decision-making (and appeal if necessary) should not be based on the irrelevancies on which we were not seeking to make my case, but on the relevant factors.  It was very clear that this did not happen.

The interview report made innumerable errors and assumptions which are simply inappropriate to a claimant with Asperger's Syndrome or Autism.  Apart from taking up so much valuable time on irrelevancies and word-processing the irrelevant results accordingly, she did not at any stage raise or question any issues specifically raised by me and my father on Asperger's Syndrome, or seek to engage in discussion on these matters.  Astonishingly, she found that I could communicate and engage with others without assistance which is incorrect.  That is why my father was present and contributed significantly in the interview and why I have a formal diagnosis of Asperger's Syndrome, since these matters are classic elements of autism and the syndrome.  The interviewer obviously neither not had any training or experience to 'overrule' that professional and indeed statutory diagnosis, and it is quite wrong that she should do so and that the decision-makers should accept that invalid assessment without question. 

After being turned down for PIP, I then asked for a mandatory reconsideration and was shocked by the very biased nature of the response. The reports reasonings for not awarding me PIP, you have described me as being on light medication and not receiving any input from mental health services. The assessor failed to take into account in his reason is that though I don’t receive input from mental health services, the state of my mental health is dependent on other services/activities which conventional mental health can’t provide, which are funded by out-of-pocket expenses which were enabled by my DLA payments. A 30-minute assessment is not the full picture of how somebodies (in this case my own) daily life is like, including being able to apply apparent social skills to difficult situations, including negotiating and solving problems/disputes.

I was then turned down at the mandatory reconsideration stage on the grounds that PIP is a different payment. The name of it may be different, but what the reply again completely ignored was that my needs were still the same as before and that my condition is lifelong. After being turned down again after the mandatory reconsideration notice, much worse has since followed after my case went before a Tribunal, a process that has again been conducted in a very biased and hostile way, not just the actual tribunal itself, but subsequent events that have happened since when I have complained to the Tribunals Service as to how my hearing was conducted, a matter which is currently under investigation with the Judicial Ombudsman.

Rather than a Tribunal Hearing, I felt that the whole experience was like being a defendant on trial in a court of law, the reverse of what I was told prior to going into the hearing. At the hearing, I had representation from an advocate who had previous experience of PIP Tribunals, who wasn’t allowed to speak, including when I wanted her to. At the hearing, I was asked some very intrusive and very hostile questions which had me constrained heavily by high anxiety, which I experience in relation to my condition. Both myself my advocate were especially furious that the Tribunal Judge did nothing at all to step in and control the manner of the lay panel member’s questioning. Not only were the questions that they asked hostile, but were clearly against their own rules regarding what questions that they could ask, asking me questions regarding circumstances that occurred several months prior to my PIP claim.

Since the hearing, my complaint as regards to what happened at the hearing has continually been ignored by the Tribunals Service, who have dismissed it on the grounds that the complaint didn’t concern the misconduct of a tribunal member yet it clearly did. The manner in which my hearing was dealt with and the way that my complaint has been handled has been completely unacceptable as it pays no attention to my communication impairment that is part of my autism. The matter is currently being investigated by the Ombudsman.

After writing to the Secretary of State for Disabilities, I was shocked to receive a reply full of lies, claiming that the PIP process was based on modern understanding of disability. But how can such a system be based on the modern understanding of disability when the policy is almost 19th century. Surely the modern understanding of disability includes ‘invisible disabilities’ or the notion of people being ‘disabled by society’ which includes people diagnosed with Asperger’s Syndrome like myself. Asperger’s Syndrome and other related conditions are not fixable or cureable, again something which modern understanding of disability takes into account, yet people with these conditions, with the right support, whether it is mindfulness classes, anger management, access to leisure facilities that meet their needs are capable of leading independent lives. With many, including myself, having had much of this taken away via the change to PIP, needs are having to be either funded out of pocket or are placing an ever-increasing burden on public services (e.g. counselling/psychological) already at capacity, with things often having to reach crisis point before anything is done.

My personal experience of the injustices of this system are unfortunately among many, including people who have lost funding for necessary equipment (e.g. specially adapted vehicles) to enable independence. It is no wonder that the United Nations has condemned the government for the way people with disabilities have been treated in the UK over the past few years. No excuse for the fifth richest economy in the world.

The whole process and experience has had a serious impact on my mental health to the extent that I have had to be referred to a Community Practice Nurse (an appointment I am still waiting for) and my quality of living in daily life has suffered as a result without the funding than enabled me to attend mindfulness/fitness classes. My experience may be rather long-winded, but I feel that is necessary to show just the full extent of the unpleasantness I have been subjected to throughout the entire process, and that the Department of Health can use it, together with many other negative experiences you have you doubt have already heard to help put things right, as such horror stories can’t continue. 

November 2017