Help me to clarify the details of how is the UK's healthcare system work? I mean, in my particular situation: Sponsorship visa under the HFU scheme + MS

Everyday living
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Hi. This summer, I’ll move to the UK under the Homes for Ukraine Scheme (HFU). I am in touch with a lawyer who helps me with everything, but I’m really worried about specific details of my disease.

I got my diagnosis in Dec 2019. My doctor did the best (everything she could)! Even after 2.5 years, I don’t have ANY problems with my body, except dizziness in the morning. Yet, I don’t have it during the day.

My life is closely related to specific sports activities (based on balance, coordination and precise movement). Also, my profession is about every day studying new knowledge (linguistics. I already know 4 languages and learning another 2). So, I hope nothing wrong will be with my brain and body for decades if the treatment is correct! Cos’ I’m doing my best!

I was taking Glatiramer Acetate, but It didn’t reduce the frequency of episodes. In fact, the frequency was reduced, but not too much as my doctor wanted! Nowadays, she wants to switch drugs to the Tysabri, yet I have JCV antibody-positive test (Index 1.8). And here is the limit of solutions which can provide my country.

The risk of PML is very high. Anyway, there is nothing else to do, except give me that drug which will make me a disabled person in the nearest future (around the next 2 years, as far as I understand it). That is why I’m moving, but not because of the war!

I’m scared to lose the ability to think clearly (yeah, I know it will happen anyway… But the later - the better!). Please, help me to understand what treatment can I expect to get in the UK in every stage of my new life: HFU visa (first 3 years), then work or study visa (next 2 years), ILR (+1 year, as far as I know), citizenship?

And what do I need to take out of my country to get this help? I have original MRI scans. Also, I can ask my doctor about the full report, take her notes (reports) about every episode that I had, or even ask for a copy of my medical card… But, I have to know exactly, what I need because the time is running out (some documents are easy to get, some of them require a lot of time to find or receive a valid copy)!

UPD: Of course, the migrants under the HFU scheme have the FULL GUIDE, but even autoimmunity disease doesn’t mention in there. The answer is frighteningly short “Ask your GP”, which I’ll have ONLY after arriving to the UK. And if something goes wrong, I’ll not be able to go back to my country. So, I want to clarify details beforehand taking the decision!

P.s. I’m really sorry for my bad English. I’ll improve it soon :slight_smile:

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My experience of the NHS is that the gateway to all services is the GP. For each disease they have a certain protocol to follow and it’s useful to ask about the protocol. Maybe someone on here with a more recent experience of going to their GP for the first time can help. Good luck.

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Thank you for the answer. I appreciate any help, really.

Yes, I understand that GP is the key to everything. That’s why I wrote my question at the appropriate place rather than asking my temporary lawyer or government services.

No one knows the answer until the doctor looks into my medical card and screening results! But, maybe, I can find someone who had a similar experience during their migration process.

One thing I can add to my text above (a fresh answer from the lawyer), Sponsorship visa under the HFU gives full access to the NHS services. But still, I’m worried about how it works in practice?

Seem, I’ll throw the dice :slight_smile:

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Hello @RichardLambert, maybe the MS Society can give you some advice on this? It’s quite specialised but, I would have expected if you have evidence of your MS diagnosis, that should be accepted and you should get a referral from your GP to neurology, once you have registered with a GP. I’m based in Leeds and the contact information for the MS nursing team is available on the hospital website so it might also be possible to reach out to your local MS nurse once you get settled somewhere.

MS nurses are absolutely brilliant. It’s really reassuring to know I can get specialist advice and support on-demand and don’t need to wait to see a neurologist.

Good luck :slight_smile:

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Gm, thank you for the answer. Seem, I understand the UK’s healthcare system better. Yeah, I’ll write to MS Society to ask for the advice :slight_smile: Cos’ still I don’t understand which docs (evidence) I have to take from my doctor, do I need to translate them, etc…

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Hello Friend. I just want to comment on the decision to use Tysabri. Indeed, the risk of PML at JCV 1.8 is serious. From what I’ve read, the safe value of the index is 0.9. My son has an index of +3.24 and that’s why we definitely gave up Tysabri, Tecfidera, etc. At the moment he is on Okrevus and thank God, for now there are no new problems after 1.5 years - move, drive, etc … I would advise you to look for a way to continue treatment with Okrevus. And the most important thing is to free your psyche from thoughts of bad prospects. Believe that everything will be fine. This helps a lot. Success!

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I apologise for the delayed answer. I’ve gone through a lot in the previous several months. You are perfectly right. When I arrived in the UK and settled up formal stuff, I had MRI. The MRI showed that MS doesn’t slow down, but rather accelerates. Today I had an appointment because of my recent hospitalization, and the doctor confirmed that I have an aggressive type of MS.

My doctor suggested Lemtrada (Alemtuzumab, the 3rd-line therapy) rather than Ocrevus. I accepted. Damn, I am so scared about the upcoming infusion of this drug and about the risk of developing PLM. I never thought about death and the meaning of life, as much as I do today. It seems I require the help of a psychologist. I hardly imagine how would it possible to accept all of this. I am just 22 :frowning:

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Richard, I haven’t been on here for a while but just seen that no one responded to your post… I hope that you’ve made some sort of progress with your DMT and have some control over your destiny now.

Warm regards - Gregor