PIP Review timescale

I've been on DLA, then PIP for many years.

My PIP review was delayed until summer 2024 due to COVID, so I was very surprised to get the review form in August 2023. I had two extensions of two weeks each and finally submitted the form in early October.

I was told by the caseworker that I could just write "no change" if appropriate when answering the questions. I didn't want to take the risk and answered each question that applied fully.

I have always avoided having an assessment (F2F/phone). But this time my medical evidence wasn't as specific in addressing the descriptors so I wasn't sure if I would have to have an assessment this time.

I got a text in late December saying my PIP review was complete, and got the award letter about 10 days afterwards.

My award has stayed the same - enhanced for both mobility and care.

I'm massively relieved, my functional capacity is very limited, but I have a poorly understood condition (M.E.) and comorbidities, so I wasn't sure if my description of my continuing difficulties would be believed.

Many thanks to the Benefits and Work Guides which helped me understand each question being asked. Especially helpful is the inclusion of M.E. in some of the examples. As well as being very useful on an individual basis, it helps to raise awareness more generally about the impact of M.E. on day to day function.

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(As an aside the name "chronic fatigue syndrome/CFS which B&W use, is greatly disliked by patients as it is inaccurate, trivialising, and stigmatising. The debilitating exhaustion that M.E. patients experience is nothing like "normal" fatigue. NICE use ME/CFS, patients usually prefer M.E. Perhaps this could be considered when you next update your guides.
More information on names here MEAction )

Late to the conversation by several months! – but the 2021 NICE guideline on diagnosis and management uses the term ME/CFS, and some in the community have taken to using it when speaking to medical professionals or making benefits claims. Since we don't yet know much about the underlying pathology of ME there isn't an accurate name, and for the time being ME/CFS seems to be the least worst option. As the use by NICE and the NHS gives it a degree of acceptance and credibility, it'd be good of B&W could use it too.

www.nice.org.uk/guidance/ng206

Congratulations to Lavender on completing the review successfully. Seven months after submitting it I'm still awaiting the outcome of mine, but I'm desperately hoping it's as straightforward!