Claim reviewer just had me report a change of health circumstances during phone review. Concerned

Hi @Mangofrog,

I don't have experience exactly but eerily similar circumstances to you and found your thread very insightful and I totally empathise with what you have, and are, going through 🫂. I'm sorry this is a bit long. I hope some of it might help you a little bit, even if it's only so you don't feel alone.

Firstly, I am very sorry you were so badly affected by Covid; I also have Long Covid, caught it three times and was affected terribly from Nov 2020 losing 2 nursing jobs in Feb '21 and then April '23 and have been on UC since June 2023, LCWRA since Oct 2023 and PIP since March 2024 (applied Aug '22).

I am undergoing my first UC review. I don't think I have updated my Journal, I might have when I was eventually diagnosed with LC, in the summer of 2023 but don't think I have with subsequent diagnoses.

I have submitted bank statements and passport etc online and waiting for a date for a telephone meeting with them. Your post has flagged to me that this may become an issue.

I'll update my Journal today with all of my diagnoses 🙄🫠). At the time I applied there were c 8, now there are c 32. Most, if not all, relate to Covid; I had 2 diagnoses before Covid both manageable easily on meds/no sickness absences and worked full time.

Part of the reason I'd not reported relates to my PIP which I think with hindsight, skewed my thinking about who deals with what/let's the others know. I think its only since being on here that I appreciate more fully that's not really connected with UC.

But incredibly long, tedious story short, (you might want to get a cup of tea or your lunch ready too 😉 🫠). I went to Tribunal March '24 was awarded PIP for Daily Living Standard; because my health had deteriorated significantly since the PIP assessment in Dec '22 I'd updated the Tribunal almost every month. No mobility problems were then taken into account, or other deteriorations as it was only what I'd presented with at the time of Assessment in Dec '22. that counted. The Tribunal told me I could ask for a Review but I'd risk losing all the award so I did not ask for a Review. Awarded to Aug 2027.

Back to the point sorry. I got in my head at that point/subsequently that, it's fair to say, I was pretty miffed that the major deterioration I had experienced did not get me the help that I needed and many dire consequences since because of that and being 'threatened', for want of a better word, that I'd risk losing what I'd only just been awarded.

I can't quite put my finger on it tbh to convey this well, but deterioration of health issues that have already been reported (but worsened subsequent to the Assessment) feel to me fundamentally flawed/unfair, particularly when the Tribunal is not held until over a year after. Anyway, I digress 🙄.

So, I've basically, never particularly considered that my situation is a 'change of circumstances' but IF worsening health is considered to be that, and concrete diagnoses - where before it was 'just' symptoms/effects on life and inability to work, then UC will be getting one major, epic, Journal update today.

I hope that you have managed to stay fairly stable with your conditions; I suspect not from you saying it was severe. I am very sorry if that is the case. Far from me thinking each day what have I got to tell UC, I have spent the last two years since not working pretty much being acutely unwell, unrelentedly, and only focusing on trying to survive (literally with double pnuemonia from Dec for 2 months) and severe diverticulitis c 25 times in the last 3.5 years, current pnuemonia plus many other health issues affecting mobility and vision.

I'm sorry I've gone off on a tangent, I often do. I hope you have support and that you have family and friends. It's just me and my dogs.

I wouldn't be overly worried now they've said your UC review is done. It's a lesson for me as I don't think me being ignorant of any of the rules would cut it. But I also make no apology for actually spending my time ill, health appointments, recovering. A week later something else and so the cycle continues.

In fact last year I updated UC as felt they were not deducting enough off my UC for my small pension. I got a curt response back saying they can see what they need via HMRC so I don't need to tell them. They've not amended it and I cant be bothered to try and do their job for them.

As an aside, I don't know if you are aware that the ME Association in the UK, also deal with and advise on LC now. I think they have for a little while now and they have a Helpline and have been very supportive when I've rang them in the past.

I've also been in touch with a Research Professor in Nottingham who is part of a team running LC anti-viral drug trials this year. He has added me to the database for possible inclusion next year. It's a long-shot and probably a pipedream for me as its c 150 miles away, I can't travel and I suspect won't meet the conditions for the Trial. If you wanted me to pm you his details I gladly will.

Please look after yourself as best you can. I try to but do not know tbh how many more times I can be hit with infections, they each time tend to take longer to recover from and I'm seeing that I don't get back quite to where I was before with my health.

Thinking of you and sending you my very warmest of wishes 🫂. If you've any questions at all about LC health matters or anything please feel free to ask. Ps o getting vision issues so may not get on here till sun mkn but will reply if youvwriye. UC update will hsve to wait!