A few months ago, on the advice of the Citizens Advice Bureau, I applied for Personal Independence Payment (PIP).  I think it is fair to say that it is not the easiest process to go through.  For those of you who are unfamiliar with the process, it begins with a phone to the DWP. This in itself doesn’t sound too bad but you are inevitably put on hold for absolute ages and by the time you speak to an advisor you are pretty shattered.

The DWP send out a large form for you to fill out asking questions on how your condition affects your ability to look after yourself and to move around.  The CAB offers a service where one of their staff or volunteers will write out your form for you.  I utilised this service which is free and thank goodness I did.  The process took about three hours and was utterly exhausting.  There is no way I would have been able to write out all the information required.  The pain in my hands would have been excruciating let alone the concentration required would have been too much for me.  Fortunately, I had been keeping some notes on my symptoms and what I can and can’t do which helped a lot when answering the questions.

I found it was very easy to fall into the trap of describing my symptoms in detail as opposed to how those symptoms stop me from doing everyday tasks.  I also thought some of the questions were a bit loaded:  One, in particular, asked about reading.  I, like many with ME/CFS, find reading very difficult due to the cognitive impairment caused by the illness, usually referred to as brain-fog.  So I answered the question accordingly but my evidence was disregarded because the question was actually about vision not the processing of written information, which is the commonly recognised definition of reading.

You are given four weeks to fill out and return the form. This is not a long period of time by the way especially if you wish to include additional evidence which you have to source.  Once you have sent off your form you generally have to have a face-to-face assessment with a health professional a few weeks later.  I requested a home visit as we live in a rural location and long journeys are often too much for me to cope with.

Within a fortnight I was seen by a nurse who came to our home.  She was very nice and said she had a good understanding of ME/CFS as one of her friends has it.  She asked me some further questions based on my application and gave me a gentle physical assessment.  I was very grateful that she was so nice and understanding as I had heard a few horror stories of symptoms being dismissed and incorrect information being recorded.

A few days later I contacted the DWP and requested a copy of the assessor’s report.  Now the DWP don’t tell you that you can request this but you can and you should.  From reading the report I had a good idea of what decision was going to be made as to what I would be entitled to.

Thankfully, for the most part, the assessor’s report was accurate and I was awarded the standard rate for care and mobility.

If there is anyone reading this who is in two minds as to whether they should apply for PIP I would recommend that you go for it.  I would also say that you use all the services that are available and there are some excellent support groups on social media that have a vast amount of very useful information.

Finally, and this sounds a bit harsh but it is important to remember:  The DWP does not care how you feel, how much pain you are in or how awful your life is.  It only cares about what you can and can’t do mentally and physically.  I am no expert but there is a big difference between the following answers to the same question:


Can you cook a simple meal?

  1. No, because I am in so much pain all the time, cooking really aggravates the pain in my hands and joints. I find it hard to concentrate on anything so cooking is very difficult and I get so tired that things like cooking are just too much or me.  I find it hard to read cooking instructions and I have fallen asleep cooking food which has caused it to burn.
  2. No, because the pain in my hands prevents me from chopping food or lifting pans, in fact it is dangerous for me to attempt to in case I drop a sharp knife or pan of boiling water. Being so tired means I can’t stand for more than a few moments so working at a kitchen counter is impossible.  I can’t concentrate long enough to understand cooking instructions and because I am prone to falling asleep cooking food in the oven is a fire risk so I don’t do it.

In my opinion, there is a difference in the quality of evidence between the above answers with answer 2 offering specific evidence for what prevents the cooking of a simple meal.  Answer 1 is vaguer and as such, there is little to tie what has been said to why I can’t cook.  I hope this makes sense.

Let me wish those of you who are going to apply for PIP or are in the process of doing so all the very best of luck.  Don’t be disheartened by the size of the task, it can be broken down into chunks but equally don’t underestimate how much is to be done or how much it can take out of you.  And remember there is loads of support out there, you are not alone.

Author: Jonathan

Hello! My name is Jonathan. I have ME/CFS and have done so for around 2 years. I live in rural Aberdeenshire with my wife and our dog Trudy. I am originally from the Outer Hebrides where most of my family still live. After school I left home to study psychology at The University of St. Andrews and moved to Aberdeen after graduation. In 2004 I joined what was Grampian Police, now Police Scotland, where I have enjoyed a varied career in a number of operational, community and partnership based roles including a 2 year sabbatical working in residential child care. Prior to developing ME/CFS I was a keen cyclist, runner, climber and skier. I love the outdoors, always have since I was a child, and I try to spend as much time outside as I can. I have never blogged before so this is a whole new experience for me. I hope you will enjoy the journey with me!

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