Written evidence from Miss Parker (HAB0016)


I have ME/CFS so can’t write much, but I wanted to say that I am so unhappy with the current PIP situation.

I was penalised for being in work, despite PIP assessment not being dependent on working status.

The assessor showed a significant lack of understanding of my conditions. He stated that because I didn’t yawn, I wasn’t fatigued; because I didn’t make audible noises I wasn’t in pain, and because I laughed at jokes I wasn’t depressed.

Post-exertional malaise is a huge part of my disability, yet no regard was given for this. There was no consideration of what I technically could do, compared to what it is sensible to do. The part of the descriptor that deems things to be able to carried out ‘repeatedly’ was totally ignored by my assessor.

Also, the descriptors are not thorough enough to consider everything required in an activity. E.g. preparing a meal does not include washing up; bathing does not include getting dried.

The way my conditions interact was also not considered. Going to work exacerbates my ME, but improves my depression. If I didn’t work, my ME would be slightly better, but my depression would be worse.

There needs to be more consideration for illnesses that cannot be ‘fixed’. It is well accepted professionally that there is no benefit to long term consultant-led input, or OT/physio input for ME, and yet I was constantly stated that this meant I was stable and well. ME is an ongoing condition, with very limited (no) treatment options, and yet this was ruled against me.

Again, the fact that my medication for my depression (currently on the highest dose), had not changed, they felt suggested I was not impacted by my depression.

There is also a lack of communication. I have submitted a mandatory reconsideration, but heard nothing back (2 months later). Not even an acknowledgement that they have got it. I rang to check, but they say if you are just ringing to check what is happening, don’t bother, wait for information in the post.

The whole process has strict time limits on when applicants have to submit the information, and the forms are very long. It was exhausting for me to complete the forms, and resulted in a relapse. Then when the assessment report came through, the errors were so significant, that it again took me significant effort and energy to state my concerns, which I only had a month to do (it might seem a long time, but when getting dressed is exhausting, writing a professional complaint is just unthinkable). In the end I had to submit my request half finished as I ran out of time and energy.

The whole system is unfair and unjust, and puts tremendous stress on people who are in their very nature ill.

I’m grateful a review is taking place, but once again feel I cannot do myself/others justice due to the energy


October 2021