Moving gradually into work after years on PIP &ESA

Hi, I’m hoping someone can advise me:
I’ve been on PIP and in the ESA support group for over 5 years with severe M.E. However, I’m finally returning to better health and want to find a way to return gradually to part-time work without suddenly losing all my benefits. I am likely to relapse if just put on jobseekers, there’s no way I can job search for 36 hours a week as I am screen intolerant and don’t have anything like that kind of stamina yet.. I am over 50 years old…..
DWP has just told me that my PIP review papers are on their way and I assume I’ll lose my PIP (it was awarded until Feb 2024). I certainly feel way less disabled in the last few months so I do want to move back into the workplace. But how do I avoid going from full support to nothing at all? Help!

Thank you for that. I’ve contacted my local CAB and hope for an appointment.
I was wondering about claimants’ experiences via this forum and about whether I should try to get myself transferred onto universal credit, their work and health programme perhaps, before I (inevitably) lose my PIP when they re-assess. I don’t hit the “over 50% of the time” criteria anymore, I only relapse when I’ve done something out of the ordinary. But I’m also
terrified of approaching the job centre as I’ve had such terrible experiences in the past. I’m afraid that if I tell them my health is improving I’ll lose everything…..

Hi Emma.

Glad to hear you are feeling a bit better.

As someone with many years of experience with ME, I hope you don’t mind if I offer some thoughts.

If you have only been improving over the last few months, then you may want to try to do some voluntary work for a few hours a week and see how you get on with that. (I tried this years ago but in the end, had to stop, despite really enjoying it, as my health had deteriorated. It was too demanding, physically and mentally)
Or, working from home may be the best option for you, given the circumstances?

You may be thinking that you are capable of doing more than you actually are. It is only when you do the work or activity, on a regular basis, that you will be able to know where you really stand regarding your health and energy limits.
The DWP may not understand that. They may want you to do more than you are able to. Be firm. Don’t let that happen.

Get in touch with The ME Association, or a similar group, as they have decades of experience and can better advise you., as well as taking the advice of moderators.

As improvements can be short or long term, please emphasise in your reapplications that it’s been five years of severe symptoms and that you’ve only been improving over the last few months.

Being positive is a good thing but don’t be overly so when filling out PIP/ESA. It can be a form of denial: “I’m getting well now. I won’t need this. I’m not disabled”. (Been there. Done that.) Be realistic and keep a diary. Try to remember what normal energy and a normal life is and feels like. Compare that to what you are able to do at present, regarding daily tasks/mobility, etc. It’s not easy to do this after a long period of time.

I applaud your eagerness to get “back in the game”. It’s understandable.
Still, baby steps.

Hope this helps.

The very best of luck and good health to you.
Angel

Thank you for your really warm and supportive reply. The ME association is a good idea, I’ll do that.. The last two years have seen longer periods of better health with shorter relapses, then this year it just feels like ‘the leg is no longer broken but the muscle is wasted’. Volunteering is a good idea, I just have to work out whether to simply fill in a Permitted work form or to take my courage in my hands and book an appointment at the job centre to see if there are any easily accessible short trainings on offer, eg to brush up IT. You know how it is when you’ve been bitten by the DWP, you never want to risk talking to them again!