Does scleroderma qualify for the government priory list

[creditcrunchie]

I don’t think it does unless of course your lungs are badly damaged but I just wondered if anyone had info. I am self isolating as I am 77 yrs of age and have an auto immune illness so I realise I am vulnerable and of course understand the importance of following the guidelines. I have managed to get an online order at Sainsburys for past three weeks but it’s very hit and miss and I am never sure if I will achieve a slot. Keep safe. Hi

[Hidden]

I think it’s based on the meds you are on rather than having a rheumatic autoimmune disease of itself. I do have a shielding letter but only because I’m newly on Mycophenolate for Sjögren’s, Scleroderma - overlap CTD

These causes me to have very Covid-like symptoms including breathlessness and dry cough. So the dermatologist who phoned a week ago decided to write and request a shielding letter because she could hear my voice sounding rough and my cough but knows I don’t have Covid - not had any actual social contact for over 3 weeks now.

However someone with mild asthma is complaining a lot on my Facebook timeline about having been sent a shielding letter. I was really baffled about why she, otherwise fit and healthy, received this when friends who are much more vulnerable haven’t. There was a post on Lupus UK linking to a Guardian article yesterday about how mistakes are being made:

theguardian.com/world/2020/...

I still can’t yet get priority with online supermarkets because they aren’t yet set up here or haven’t yet got the lists. No mention of priority orders as far as we can see. Luckily we do have enough food to last for a few weeks from a delivery we managed to get yesterday - booked a few weeks ago. Only 2 of us and we need to be frugal anyhow as unwaged for the time being.

I’m guessing that so many are trying to avoid shops now due to underlying conditions or being carers or having children at home or being key workers - that slots are like gold dust everywhere for all.

[creditcrunchie in reply to Hidden]

Thank you Stalwart 7 / good info and much appreciated/ I have researched and realise I would not qualify. Again thank you. Credit crunchie

[LucyJean]

Hi there, no scleroderma in itself will not get you on the government priority list. But, if you had a combination of factors, such as your age, and medications that could compromise your immune system, and damage to your lungs or heart in relation to your scleroderma (or any other underlying conditions) then you would go on the list. You can always have a word with your GP and discuss the situation. They will be the ones making the main decision about whether you are on the list.

At 77 your age alone would suggest that self-isolation would be a good idea at the moment.

If you are on any immunosuppression then you definitely need to stay at home, and those that live with you need to do so too.

There are several posts on here discussing the risk factors, and SRUK put a link to a Facebook question and answer session with one of the country experts on Scleroderma so do have a look at those.

Hope that helps

Lucy xx

[creditcrunchie in reply to LucyJean]

Thank you Lucy/ I think I will be ok / I am fortunate that I have family around and in a far better position that many others.

Keep safe and keep smiling x

[GGhere]

Hello creditcrunchie. I tried to do an online shop at one of the major supermarket but they said they are only taking on new customers who are on the Government's vulnerable list. Then I had a text to say check with my GP if I wanted to be put on the vulnerable list which I did. He said yes, you are vulnerable but you don't qualify for extremely vulnerable - you have to be on the extremely vulnerable list to qualify for the extra help. So I wasn't able to do an online shop. I will be 80 in a 5 months time. I have Systemic Sclerosis involving chronic kidney disease, a heart condition, scleroderma, raynauds, and I take immune suppressants - My GP explained that it's the immune suppressant drugs which make you vulnerable.

[creditcrunchie in reply to GGhere]

So sorry Betsie to hear of your health issues and find it hard to understand why you are not prioritised. Because I did an online for a holiday the supermarket had me on file so although it is a bit hit and miss I do occasionally get a slot. I found the guidelines on line which show how points are awarded to give you priority. I did not fit but my friend did and she did receive the government priority so maybe it's worth checking

Keep safe. X

[pennypalmer62]

Hi there, I'm taking immune suppressants for Systemic sclerosis. I also have raynauds and other related conditions. I received a letter from the hospital where I attend the rheumatalogy department stating that I should self isolate for 12wks. A week after that I received a letter from NHS stating the same and information regarding self isolation. This letter is also for my workplace stating that I can't go out. Seems that some people are getting letters and some not.

[Halfwayuphill]

Hi, I’ve had a letter from the Royal Free telling me to shield. I don’t have full Scleroderma but UCTD with signs of limited Systemic Sclerosis and GI issues. (Slow transit, SIBO, reflux dirviticular disease etc and urine retention). I was going to query it as my lungs and heart are fine but looking at the Royal Free website Scleroderma and COVID page, one of the criteria to be on the shielding list is significant gut issues. Just in case anyone has the same problem. My letter came on the 7th April but I’m still waiting to get on the priority shopping lists with the supermarkets. My friend told me it took her two weeks and she was on the original smaller (about 1 million?) list.

[AMDP]

If you are under a Dr you should be on a list to get priority. Keep Safe Ax

[creditcrunchie in reply to AMDP]

Thank you for your replies ///

AMDO and Halfwayuphill (love that name and felt akin to it this morning when I was trying to get up after doing my meter readings) and Kimmo. As I am managing so far so I am not pursuing my enquiry any further but thanks for all your input.. And again thanks one and all and hope that the information you have all given will be useful to not just myself but others.

Keep safe and keep up the great work on this site as it is invaluable.

[Halfwayuphill]

Re the getting on supermarket priority delivery lists, I had another look on Ocado as still waiting even though 2 weeks since registered on the government list, and apparently you have to make sure you tick you need help with supplies. According to a friend they then ring you and ask if you need food parcel (which I will decline) or if you are happy to order from supermarkets. They then inform all supermarkets who match your details with their customers lists. Did this at the weekend so hoping to hear!

[kimmo]

Hi. I don’t know if this is relevant but I received my NHS letter a few weeks ago, and not long after that one signed by Matt Hancock from the Government. In this letter it discussed covid19, vulnerable people, circumstances etc. It also asked that you register either online or by phone with the government. I did this by phone and had to answer a set of questions. I am ok as my children leave my shopping, for now. My friends are both disabled and they answered differently. A food box was delivered to them next day and at least four emails received from supermarkets. I’m not sure if this is what you were wanting confirmation of? Stay safe x