In this post Independent Lives Trustee, Sue Lines, shares her experience of a recent Personal Independence Payment (PIP) Assessment, with Helen Charlton.

Hi Sue, can you give me some background on your role as a Trustee at Independent Lives?

Like many trustees I felt I wanted to give something back to the disability community. Since having a brain haemorrhage in 1984 I had worked in the disability sector and local government as an access officer for well over 20 years. I’d acquired numerous relevant skills, knowledge and experience. So, a year or so after I moved to West Sussex I joined Independent Lives as a trustee.

How does PIP support you to fulfil your role, and generally be able to live your life independently?

PIP has two components – daily living and mobility. As a disabled person I have a Motability car, and this is funded through entitlement to the enhanced rate of PIP. I cannot use public transport so the car enables me to get to Board meetings and any other meetings associated with Independent Lives. My car also means that I can have a life outside of my home including; getting to supermarkets, doctor, dentist, shopmobility schemes, cinema, theatre, meeting friends and just about everything else that most people take for granted.

And crucially, my PIP payments also enable me to employ a home help to do all the things that I cannot do in my home such as cooking, cleaning, replacing lightbulbs, testing the smoke alarm and many other tasks.

Can you describe how you were contacted about your PIP assessment, and how you felt about this?

Thirty years ago I had been awarded a ‘lifetime decision’ for Disability Living Allowance (DLA). When PIP was introduced I knew that I would have to be reassessed but presumed the process would just be a formality and that I would retain my benefits. My view was that I am obviously disabled and anyone can see that I more than qualify for these benefits.

In the Autumn (2015) the Department of Work and Pensions (DWP) sent me a detailed form – ‘How your disability affects you’ which I had to complete. From my answers I presumed that anyone reading my form would realise what my limitations (their word, not mine) were, and how they impacted on my daily life. And then the next stage is that you are ‘invited’ to a face to face interview with a ‘health professional’ who could simply be a nurse or ordinary physiotherapist who has no experience of disability. I thought it was ridiculous that I had to go along for an assessment; and all my friends and family shared my opinion too.

How was your experience of the PIP assessment on the day?

To begin with, quite funny. When the assessor came into the reception area and called out my name I literally could not get out of my chair (and I think I am well known for that at Independent Lives).
Three people came to my assistance and hauled me upwards. At which point the assessor called out ‘wait there I’ll be back in a minute’. It turned out that because I’d driven myself to the assessment, and not bought anyone with me the assessment still had to be completed. I followed the assessor through to her office. In hindsight I realised this was a trick; to qualify for the enhanced rate for mobility a person should be able to walk no more than 20 metres. The distance to her office was 30 metres.

Questions were fired at me: ‘can you prepare and cook a meal yourself?’, ‘can you drive?’, ‘can you text?’, ‘do you do gaming?’, and many more random questions. The assessor was polite, but the fact that she stayed behind her large computer said it all.

I was told I’d have an eight week wait to hear the decision, and really thought that I wouldn’t hear till at least February.

How were you informed of the decision?

A friend was staying with me after Christmas and three weeks after my PIP assessment we arrived home on New Year’s Eve – a brown envelope was hanging out of my letter box.

I knew what it was. I was so nervous my friend had to open the envelope for me. I read the decision three times over, not comprehending or believing what I saw. The letter had been dated 25th December, Christmas Day, as if the DWP couldn’t wait to crush another disabled person. Not only had my benefits been drastically reduced, but I was also told that I had to return my car.

You understandably disagreed with the decision made by the Department of Work and Pensions – what did you do next?

Yes, I phoned them on the Tuesday, after the Bank Holiday. They didn’t officially start the reconsideration stage until the Friday, 5th January. I went to see my GP and over the next two weeks she wrote a long report to the DWP addressing all the points on their form in support of me. I also wrote to my MP, spoke on a podcast for the Disability News Service, and wrote to as many national newspapers as I could about my story. I then went over to Brighton to see my specialist physio who also wrote a long report about my condition to the DWP.

Next, I spent over 6 hours on the phone and surfing the internet just to find an appropriate solicitor to represent me should I need to go on to the next stage (the appeal). On Monday 1st February I had to drive to East Ham in London to instruct that solicitor. However, after nearly four hours of driving there was nowhere to park. The solicitor suggested I make another appointment to see him at one of their offer offices – I refused, and he eventually found a space for my car at the rear of the building.

My car was returned to Motability the following week. Two days later I then heard from the DWP that my benefits had been reinstated and backdated to the original decision date. But, as all my friends live a long way from me (I used to live and work in London till 2012), I then had to wait for a friend to come down from Essex to take me to a dealership in Brighton to place an order for a new Motability car. I was only housebound for six weeks and I can’t begin to tell you what that was like.

Independent Lives hopes that disabled people who have been in a similar position will consider challenging the decisions made relating to their entitlements. What would you like to say to these people?

The process is that if you disagree with their decision (the DWP) you than have what they term a ‘mandatory reconsideration’ and that usually takes ten to twelve weeks. If their decision then remains unchanged you then have a right to appeal.

Although my mandatory reconsideration was successful, the process from losing my benefits to getting a car again took about three months. I would say that for people who then have to go on and appeal the timescale is many months – in both situations you feel that you and your world has completely turned upside down. The more I have read about these cases the more I understand that the Government, via the DWP, is simply playing a numbers game: they want to save x billion pounds in benefit payments and ‘the disabled’ are first in line. Easy pickings – the majority of us are expected to take their decision without a whimper!

Take someone with you, and before you get to that stage, when filling out the form it is very important that you include current information about your condition.

If you do find yourself in a similar position to me it is so important to realise that you are not alone and that there are many organisations out there who can help. One excellent organisation, which I heard about through Independent Lives is Benefits and Work.

Apart from the usual factsheets they provide a bi-monthly email newsletter which carries useful stories about things like ‘What the Government are up to now’, and how disabled people are fighting back.

What I would say is, for anyone going to an assessment – take someone with you, and before you get to that stage, when filling out the form it is very important that you include current information about your condition from e.g. your GP or physio or consultant that addresses some of the key questions on that form.

Regarding my form, it was either not read or not believed and the documentation I enclosed from my medical experts was too general and again not considered.

Please note, Independent Lives is not able to provide advice on Personal Independence Payments (PIP). The article below is one individual's experience of the PIP assessment process. If you would like advice on PIP or any other disability benefit, please contact your local citizens advice centre.