Hi everyone,
We've just published an article which provides information about various forms of essential, social and financial support available for people with lupus who are self-isolating and shielding to protect themselves from the coronavirus (COVID_19)
lupusuk.org.uk/coronavirus-...
I hope you find it helpful! If you're aware of any schemes we've missed, please let us know so that we can add to this page over the coming weeks.
So it dont look like self isolaters of 12 week ordered by the government are not going to recieve any help regarding wages like other workers are, and now looks like the self employed are going to be bailed out too!
So why should we be expected to get through on £94 pw!!
So looks like I'll be back at work soon and take the risk!!
Stay safe all ♥️
Hi, steve, i think it’s disgusting that people like you are being made to live on £94 a week , although the government are supposed to be increasing it to £118. My husband has just stopped work today, not because he is ill but nowhere is open for him to get materials, now they are saying you can claim universal credit but that takes 5 weeks, by then he might be back at work, absolute joke, why should self employed or anyone self isolating be penalised for something that isn’r there fault. So it looks like ssp for him . Hope you get better soon
Thanks for your reply, I think theres going to be more info revealed tomorrow for self employed, so hopefully your husband might be ok!
But for me 94pw is a joke and for 12 week!!
Afraid I'll be off to work and pray I pick nothing up x
Thanks for your reply. At the moment i am still working. Hopefully they will give you more, and your right it is a joke. Like to see out mp’s manage on £94 , obviously that won’t be enough for their caviar ha ha
But can you be certain that you won't be putting anyone at risk? That is what we all have to ask ourselves.
I have no symptoms but I guess I'm putting myself at risk more tbh x
Thank you for this, you have worked so hard and it is so appreciated - from yourself and the entire Lupus UK team. Hope you get a good holiday when all this is over!
I do think the article need changing though to NHS England. NHS Wales are not considering us SLE sufferers as high risk - even myself with persistent leukoponia and neutropenia (never normal white cell or neutophil cell counts), disease is active, no rheumatologist, no treatment plan, no meds. But in the eyes of NHS Wales I am not at righ at all. This is from my GP this afternoon - NHS Wales does not recognise SLE as high risk - or at any risk at all.
I can't remember the full list, but cancer patients and those on immunosurpresent drugs were. SO no, the NHS is NOT saying SLE patients are at risk and to stay in self isolation for 12 weeks. It is NHS England that is that for NHS England patients. This does need to be defined and addressed. No SLE sufferer ithin NHS Wales will get 'at risk' letters or texts, unless they are on immunosurpresent drugs.
Hi Ceri-NorthWales ,
Thank you for your feedback. I do know that those in the extremely vulnerable group in England and Scotland should be getting letters by 29th March. One of my jobs for today is to investigate more what is happening in Wales because it hasn't been as clearly communicated. Contrary to what you were told by your GP, I had heard from an Assembly Minister that SLE was on a list of high-risk conditions for Wales although we've had no response so far with a copy or link to the document.
My advice to anyone with lupus would be to self-isolate/shield for 12 weeks if you are able to as it is the best precaution.
Thank yo for this reply and perfect timing, too as I am shoortly off to the surgery to have stitches removed - but no B12 injection as there is no nurse and they will not come to my house - no transport, B12 deficiency overlooked since July 2019, now need 3x B12 injection per week, then every month or two. It is thanks to Kevin and Foggyme that I now have this treatment plan.
Good luck with yet another challenging day, I hope you manage to get something sorted.
Worth noting that the 'vulnerable support' is NHS England only - gov.uk/coronavirus-extremel...
As are the 405,000 NHS volunteers - as for NHS England.
Thanks Ceri-NorthWales . We'll see what I can find out over the next few days and I'll do my best to present more information for people in Wales.
Thank you Paul. All of your hardwork, really is appreciated. Thank you for all you have done and are doing. Here's to you celebrating your birthday properly after all this is over. You deserve it!
Hi Paul, sorry to add to your workload, but would it possible to be able to get an answer for those of us, suchas myself, who is diagnosed SLE, ro rheumatologist, no treatment plan, no meds, not every hydroxychloroquine (I seem intolerent, but have no rheumatologist to discuss this). Also leukopenic (low white cell count) and neutropenic (low neutrophil count, the part of white cells that fights infection). Raynauds confirms, PPD diagnosed last week, along with migraines and something else via neurologist. Sorry to ask. It's jsut the 'scoring' indicates by medication taken, but on none and have a weak immune system. Sorry about ths!
The scoring isn't judged purely on medication - it also takes disease activity, symptoms and other underlying conditions into account. If your disease is currently not well managed then it would be likely that the guidance would recommend you shield for 12 weeks, especially if you have a low white count too.
Hi Ceri-NorthWales ,
Just a bit of an update on my research into NHS Wales. It looks as though NHS Wales is using exactly the same criteria for 'extremely vulnerable' people as NHS England and NHS Scotland - gov.wales/guidance-on-shiel...
You're correct that it doesn't mention lupus (or other autoimmune rheumatic conditions). RAIRDA has been pushing for clearer guidance for this group and I've heard that National Voices recently spoke with the Deputy Chief Medical Officer of England and they indicated that a more comprehensive list of vulnerable people and clearer guidance will be coming.
I'll be updating LUPUS UK's guidance again at the beginning of next week with anything helpful I can find.
Thank you for this. Much clearer now, thank you.
Still confused as to where this leaves me given my situation and health, especially with no rheumatologist.
And GP still thinks I am of no risk whatsoever, despite all reasons I ha e said. BCUHB really need to get their act together. My experience has been terrible. Haemotology and dermatology at Glan Clwyd have been very, very good experiences but that's it.
It is not right that all 405,000 NHS volunteers are all for NHS England. We are one nation and we should all be helping each other, no division. In the Olympics, we are Team GB, but this doesn't seem the case in the fight against a global pandemic. This isn't right at all.
I also cannot get much needed b12 injections as I can't get there (car crash, no buses, no money, can't afford taxis), no nurse will come.out to me as understandably district nurses are snowed under and the NhS volunteers are NHS England only. They also won't come to me as I am not housebound. I desperately need B12 injections (my story is well documented here) I have 24/7 dizziness and I struggle with everything.
And to too it off, got PIP letter through this morning - 0 points!! Not awarded. Complete rubbish. No idea what to do.
I love living in Wales, it is so scenic, so much natural beauty and the air is so much cleaner. But it doesn't half come with problems! Life would be so much easier if I lived just 12 miles away in Chester.
I ha e no idea what to do. The stress is causing major lupus flare. Fatigue is all over the place, I feel so rundown and I suffer migraines, plus the usual flu type body aches. I need help, but have no idea what to do. I am so lost. I am so desperate to see a rheumatologist but there is no way. It is so wrong. I need healthcare and have fought so hard and you, Kevin, foggyme and so many members here have helped out so much and I am so grateful. Especially in this unprecedented time. I don't know what to do. I am lost and alone. So much stress. Please help in anyway you can. I don't care who my case is escalated through or even if it goes to parliament. I need help, please.
Hugs to you,
sorry I have nothing else I can offer you.
Keep strong.
Thanks Paul, it's good to have all of that info in one place.
Again, you and your team are all so awesome with your compassion, hard work, and foresight! The message I got from the CEO of HealthUnlocked was also so very kind. Especially since I’m a ‘Yank’. But seriously, I really do appreciate that you allow foreigners to participate, for all your help, and all the friends I have made here. Thank you Paul!
You're no 'foreigner' here. We'll all.one big unit here for each other, and you've certainly helped me. Please don't call yourself a foreigner, we are all people ☺️ and I like your replies, knowledgeable, caring and humour in there too. Thank you 🤗
Awe Ceri, thank you! My main ancestors are Scots. My husband’s too. As well as other European countries, but mostly Ireland and England (and I have a several lines of two Native American groups.) So I do feel somewhat like family, and I love you all! ❤️
So thank you for making me feel welcomed. 👍
I agree completely!
Thanks ever so much Paul_Howard
I'm having mega flare but doing OK. Sorry if I worried anyone. Sorry if I was too manic with information ( for me it was "manageble low level hypomania" ... hard to switch off)
I'm getting back to normal getting rest. My sleep patterns still abnormal for my usual
Everyone worried about money. I know how stressful that can be, however for next 2 weeks you'll have to "just wait it out" until government get up to speed
I've lots experience of ESA system and the fact that government way of assessment of disability is ridiculous using out moded idea of what "disability prevention of you working" is actually like
The system can be confusing but you'll be fine energy impairment limitations and or a system for benefits money for all "extremely vulnerable persons linked to COVID-19" WILL BE SORTED.... otherwise they're going against the equality act
Be a while before I can tell you more. May be info under my profile the type of advice comments I tend to answer "in general"
I'm resting ... Butterfly cocoon for me as totally worn out
Trust the right action is taking place in your life, be at peace
💜💜💜💜💜💜💜💜
Hi fabwheelie ,
I'm sorry to hear that you're flaring and I hope you can get some decent rest and feel more like yourself soon.
Thank you for your reassurances.
Hi, I have tried that link but it doesn’t mention Lupus.
Paul_Howard I have not received a letter - have SLE, on steroids etc.
Only received my letter this morning - came from the Hospital trust where my rheumatologist is based so they’re obviously still coming out.
Thank you for letting us know Cathyan . I saw a tweet by the organisation National Voices which suggested it could be a couple of weeks before everyone has received their letter.
