Refused treatment.: Hi . I have GPA and I am... - Vasculitis UK

Vasculitis UK

7,343 members6,347 posts

Refused treatment.

Willmebe profile image

Hi .

I have GPA and I am identified as being clinically extremely vulnerable due to the fact that I take immune suppressants (Azathioprine and Prednisolone).

I recently became infected with Covid 19 and became very ill. Because I became ill on the weekend I so had to book a courier to pick up my PCR test. The call to 119 took nearly two hours to be answered and was a complete nightmare to undertake when being so ill.

I registered my condition with all the relevant departments and awaited a phone call from a doctor to assess my condition with the view to being offered one of the new treatments, (Nirmatrelvir, Ritonavir, Remdesivir, or Molnupiravir) because I am clinically extremely vulnerable.

I waited anxiously by the phone as I was told that I would receive a call from a doctor within 24 hours after registering my Covid 19 results. I was absolutely frightened to death and just wanted to speak to someone for reassurance.

The call never came and so I rang 111 for advice. 111 told me that a doctor would definitely call and I was to wait for the call.

Five days later I get a text saying “Our GP has reviewed your medical records and there is no indication you meet the strict criteria for treatment. We've had high volumes of referrals and our GPs are unable to speak to every patient”. Regards Covid Management Service South Worcestershire Primary Care Limited.

I did not receive a single phone call from my GP, the Rheumatology Team, the Respiratory Team, or my specialist. I have been left to live or die alone

Apparently, the conditions for receiving the new treatments have recently changed. Clinically Extremely Vulnerable people no longer qualify. I just wondered if anyone else had been refused treatment?

24 Replies

I have microscopic polyangitis and recieved some infusions of cyclophosphamide of which I had bad side effects from, presented my self at Warwick hospital and the consultant told me my case was to complex and there was nothing he could do, I was still in so much pain I went to A&E, the doctor read my notes and said there was nothing he could do either, I must be the only person I know who went into A&E and came out feeling worse. I was dumbfounded. Turns out I had peripheral neuropathy, the nerve pain was off the scale ! Doctors are afraid to treat cases like ours for fear of mistakes. The NHS in England is a joke !!

I had the same experience as you. I tested positive the start of Marcjmh. I didn't hear from anyone and had to chase it up I was told I didn't meet the criteria. I am prescribed Azathioprine 100mg and the vasculitis is under control. I enrolled in the Panoramic study but randomised to complete the diary with no anti viral. I completed the diary and was rewarded with £10 amazon gift voucher. I

As you are on Azathioprine and Pred, it sounds like you're on a maintenance dose. I.e. your GPA isn't active, or flaring (sometimes considered 'in remission'). If supplies of new antivirals are low, perhaps GPs etc are only supplying to people at greater risk than you. E.g. People being treated with high doses of Rituximab, Cyclophosphamide, etc due to a flare/relapse. Or patients more at risk such as transplant patients.Doesn't mean your not high risk, just not as high as others.

Did you receive an email/letter stating that you are eligible for antivirals?? If so, that letter tells you not to use PCRs now, but LFTs and you should have received a box of LFTs that you hadn't requested/ordered. If this hasn't occurred, then you must not be classed as Clinically Extremely Vulnerable at this time, perhaps Clinically Vulnerable.

If you have received the letter/email, I'd chase this up asap with everyone involved in your care.

If you have not received this letter/email, I think the best thing to do is to call the same people and explain your situation. I'm not sure, but maybe GPs can order the antivirals on a case by case process??

I hope you quickly recover and maybe have someone to help with the phone calls especially as you are so unwell.

This is awful. There are two things I want to say. 1. If you already had a PCR test at home, then this means that you are on the NHS list of clinically extremely vulnerable, and I don't understand why your GP said otherwise. 2. Having already received the PCR Test with instructions, you should then have recently have received a special government box of Lateral Flow Tests and updated instructions to use these tests instead of the PCR tests and report any positive result to get the treatments. They have changed their plans as to how to deal with us. This might explain why things haven't gone the way you expected, and although it's a bit late in the day, you could try explaining this on 119 perhaps? I'm not sure.

But if you were very ill with Covid, why did you not call 999 or even go through 111?

Willmebe profile image
Willmebe in reply to Nadine99

Having never had Covid 19 before, how is anyone expected to know when to call the emergency services? Surely that judgement should be made by the so-called doctor that supposedly should contact you within 24 hours of a positive test?

The problem is the doctor never calls, and you receive a text five days later. By that time it is too late to administer the antivirals because they have to be given in the early stages of the infection.

Nadine99 profile image
Nadine99 in reply to Willmebe

My point is that if you are really bad (as was my husband) you call an ambulance

Thank you everyone for your replies. I'm still so angry about the lack of support that I received. A simple phone call is not too much to ask for, is it?

I was under the impression that the government had our backs, I was obviously wrong. All that talk about the vulnerable being protected is utter nonsense. I would like to think that my experience was just a one-off, but I fear that I am now one of many.

It may be a good idea for everyone with an autoimmune disease to check with their GP's to find out if they qualify for the new treatments. That way they will know whether they have to fight Covid alone, or hopefully receive the help we all deserve.

Call the nurse specialist at your hospital and your GP. It is not the fact that you are clinically vulnerable that entitles you to the new anti viral etc it is the fact that you are on immunosuppressive medications emphasise that call your GP for an oxygen pulse oximeter. I hope you make a good recovery.

I am so sorry you had to go through such an awful experience! It does appear that some of us are not deemed as clinically vulnerable as others. I too am on prednisolone and azathioprine. I have not received a letter, PCR or LFTs recently. I used to get the letters about being clinically extremely vulnerable. So before I go out and about too much I contacted the GP to enquire why I hadn’t received notification that I’ll be treated with antivirals if I get covid. I was told I don’t meet the criteria. This was pitched as good news, but it has made me even more anxious about going out. I have EGPA which primarily affects my lungs, and my breathing is not great currently, but apparently the nature of the disease isn’t relevant, only the medication you’re on.

It does feel like we’re not treated as individuals, just in large groups of criteria. What a sad reflection on our society. I have always believed in the NHS but I wonder if anyone knows about private medical provision for covid treatment? I am about to retire and perhaps private medical will be the best way to insure I get to enjoy my retirement, at least for a while.

I’m really shocked for you. I’m on maximum dose of Mycophenolate and told I qualify in February by my rheumatologist. But I’m in Scotland so maybe it’s different here - hoping so 🤞🏻

I try not to think this way but can’t help feeling that if majority of those in hospital, really sick with Covid, are those who refused their vaccinations - and given restrictions have all ended now even in Scotland - then this raises such big issues for society about how we treat our most vulnerable. It also should be a matter of great concern to our consultants about who they should be giving which medications to and safeguarding. They do have a duty of care.

It sounds as if you escaped the worst of Covid - but as you say how can we know? If we have been told what to do by letter and this has changed then they must surely let us know. Can you raise this with your rheumatologist and your MP perhaps?

If we have to learn to live with Covid then those who govern and the NHS both need to work out asap where this leaves the CEV population and who should get which treatments or be prioritised. And not to even phone you back as promised beggars belief?!

You could have tried 999 if you're in the UK, at least to find out what they had to say.

I've had covid myself, tested positive and felt rotten I just had to sit it out but if I'd felt as poorly as you describe although you don't mention exactly what your symptoms were, I would have called 999.

My husband had covid. On azathioprine and prednisilone. NHS contacted him after recording lateral flow. Passed to local NHS services who said he wasn't eligible for antivirals as wasn't immune suppressed enough! Had covid for 12 days and still has residual cough. He feels let down. Was scared to go out for the past 2years and then left to get on with it. He received all the emails, pic,lft and info, so don't really understand.

So sorry to hear that. I hope you are now improving. I have a similar story. I too have GPA and on the vulnerable list as I have rutiximab infusions. I too recently contracted covid and was bed bound extremely poorly, I did get a pcr test delivered but the same as you it ended there. No phonecall no messages on what to do next. I rang 111 and 119 and my surgery. No treatment came. I was very unwell for at least ten days, tested negative on day 13 .and am still coughing and fatigued. And have nasty sores.However a few days ago I received a phonecall from the surgery from a doctor who said she should absolutely apologise as somewhere in the system I had got lost. She had done the referral but it wasn’t acted on. I did not need to go into hospital and I did have my daughter care for me. But there is a problem in the system.

Sorry for the long reply. Stay safe

Wageners

vivdunstan profile image
vivdunstanAdministrator

Sadly the list being used is restrictive and Azathioprine often does not qualify. We have had other patients in recent weeks be refused treatment on these grounds.

You can see the list at rheumatology.org.uk/practic... under what treatments are being offered.

Specifically:

“Treatment-eligible immune-mediated inflammatory disorders (IMID) are:

IMID treated with rituximab or other B-cell depleting therapy in the last 12 months

IMID with active/unstable or stable disease on corticosteroids (equivalent to >10mg/day of prednisolone for at least the 28 days prior to a positive PCR result), cyclophosphamide, tacrolimus, cyclosporin or mycophenolate

IMID patients with active/unstable disease including those on biological monotherapy and on combination biologicals with thiopurine or methotrexate”

Azathioprine is a thiopurine, and a patient on Azathioprine only qualifies if they are also on a biologic treatment (eg Rituximab etc) or on a steroid dose of over 10mg.

Sympathies.

vivdunstan profile image
vivdunstanAdministrator

One more point: the UK list of people eligible for antiviral treatment was never the clinically extremely vulnerable list. It was always a much narrower list of people, based primarily on medication and doses used. And it does have some notable omissions, which are questionable, and cause distress and problems for patients. But I’m afraid your experience is not surprising. Sympathies again.

vivdunstan profile image
vivdunstanAdministrator

Some kidney or liver patients may also qualify depending on meeting other criteria. Sharing this info cos it may apply to some vasculitis patients too. The Scottish NHS page is clearer about the qualifying criteria than the English NHS one, but the same criteria are being used across the UK as far as I know.

nhsinform.scot/illnesses-an...

What’s really weird is that I am on 6 monthly infusions of Rituximab but no free lateral flow tests but received a free PCR test. Anyone know who would be the people to contact to get mine or in fact if a qualify.

vivdunstan profile image
vivdunstanAdministrator in reply to Investigator1

If you’re eligible for antiviral treatment - which you should be on Rituximab - you should still be able to order LFT tests yourself on the UK government site. Go to gov.uk/order-coronavirus-ra... and go through the pages, making sure you select the option for being eligible for antiviral treatment. Hope this helps!

Yes just done that, however the truth is anyone can do it, if they just say they are entitled to Covid treatment and they can order it. My wife tried it (obviously didn’t order any) you just tick a declaration at the end. You’d have though some kind of check was done. So I am thinking I have slipped through the net. I think the LFTs that are sent out to the CEV are different anyway. But thanks for your help.

vivdunstan profile image
vivdunstanAdministrator in reply to Investigator1

It’s definitely not well controlled, but this is the system that is being used for antiviral eligible people to order more tests as they need them when they’ve used the ones first sent. So it should work. And you definitely qualify, being on Rituximab.

vivdunstan profile image
vivdunstanAdministrator in reply to Investigator1

For more information on the testing arrangements and ordering more tests see nhs.uk/conditions/coronavir... particular this bit. You were absolutely right to order these tests, even if yes it is a not well controlled ordering system.

“If you are eligible for COVID-19 treatments, make sure you have some rapid lateral flow tests at home so you can get tested quickly if you get symptoms of COVID-19.

Rapid lateral flow tests are tests that show you the result on a device that comes with a test.

If you do not have tests at home or need more tests, you can order free COVID-19 rapid lateral flow test kits on GOV.UK.

If you cannot order tests online, you can call 119 free of charge.”

Yes we have a few LFT tests getting them isn’t my worry.It’s being registered to get the anti viral drugs, I want to try and sort it before a worst case scenario occurs. I have emailed my GP tonight.

You may find my experience this week and what I learnt helpful -

I was/am CEV and subsequently received the info telling me I might be eligible for treatment if I contracted Covid. I'd been sent the PCR test which was then superceded by the LFT.

When after a few days of feeling poorly but testing negative I tested positive for Covid on Tuesday, despite being so incredibly careful. I phoned the GP, who took details, and 20 minutes later I had a call from the CMDU (Covid Medicine Delivery Unit). They asked re my meds, which include 1.5grams of mycrophenalate and pred and confirmed my eligibilty.

There are two treatments - one tablets, the other infusion. As I am on thyroxine I had to have the infusion. 24 hours later I had the infusion at the CMDU at Westminster Hospital in London. (They're all over the country). It was 30 minutes, and 1 hour waiting after.

What I learned is that only 8% of patients who were officially CEV are considered eligible for this treatment. It's the level of immunosuppresion.

But as so many say above it isn't clear, and seems quite a hard demarcation line.

I hadn't developed any antibodies after 4 vaccines but they didn't know that as I did a private test.

I don't feel well, and am monitoring my air etc. It stops you getting worse but it isn't a cure.

It's been so difficult for us all. My friends (most of whom I haven't seen for two years) keep saying "but you've been so careful!". Yep.

So continue to be safe and it can't hurt to find out more about eligibility.

You may also like...