Inmigrating to the UK with Sjögren's, how to?

[arr_husband]

Hi! I hope I am not breaking any rule because this is about Sjörgen's and not Lupus, and I am writing this on behalf of my wife.

We will move from the USA to London in a couple of months. She was recently diagnosed with Sjögren's syndrome, which took very long to diagnose, and she is starting a treatment that she will need to continue with and get attention from a specialist. For now, the treatment is hydroxychloroquine, which I think is on the WHO list of essential medicines.

I would like to know about anyone's experiences with a chronic condition when moving and settling into the UK. Once you get the visa and NHS surcharge, how will you proceed? Apart from bringing her medical records, what should she do? In what kind of time frame could I expect to have a new specialist assigned, get my treatment followed, and get medical guidance? Will the NHS honor the diagnosis from overseas?

I hope she does not have to stop the treatment because of the move. Her rheumatologist will only be able to provide a 3month supply before leaving the USA, which will be 1 month before we arrive in London.

If it is relevant, we can access helix private healthcare through my employer

Thanks!

[citygirl1234]

Hi,

When you arrive in the UK, you will both need to register with an NHS GP. The practice will give you a registration form to fill in and also usually ask you for details of existing conditions, family history and any medications you are taking. You can find a GP in England using this search: nhs.uk/service-search/find-...

I would suggest your wife books a GP appointment after she’s registered, as she will need to be referred to a rheumatologist at a hospital for her Sjögren’s. Note that it can take a while for an NHS appointment to come through, the wait time varies from place to place. If she has a 3 month supply that will help tide her over, the GP may be willing to prescribe hydroxychloroquine in the meantime, but it’s at the doctor’s discretion. (Should be fine though if you can share a letter from her current doctor). The GP can also write a referral to a private rheumatologist if your health insurance will cover it or you are happy to pay cash. Note that private medical insurance is a bit difference in the UK and it often doesn’t cover long term health conditions if they are pre existing so check what is and isn’t covered if you have insurance. (Private GPs are also a thing in the UK, but most people use an NHS GP for primary care).

If your wife brings a copy of her medical notes and a letter from her consultant in the states and gives a copy to the GP, they can put it on her record. She should also share a copy with the rheumatologist when she gets to see one. I’d suggest offering a digital copy and also physically having a paper copy as the GP and hospital may be on different record systems, and sometimes it’s quicker to hand the doctor it. A rheumatologist may want to repeat some of the investigations at a first appointment to confirm they agree with the diagnosis but they should recognise that the diagnosis came from another specialist in the US, and she shouldn’t be starting from scratch to get a new diagnosis.

I’d suggest you also check out these two sites:

1) British Sjögren’s Syndrome Foundation

bssa.uk.net/ - they have lots of information and can help you find a specialist

2) The NHS page about Sjögren’s syndrome

nhs.uk/conditions/sjogrens-...

This page gives an overview of the NHS’ patient advice about Sjögren’s and how it is treated in the UK

[arr_husband in reply to citygirl1234]

Thank you! This is very useful!

[lupieibbie in reply to citygirl1234]

What an excellent, comprehensive reply, citygirl 👍

[Potatoheat]

Great info from Citygirl. Try and get a rheumy appointment ASAP. because they have a big backlog since Covid. Good luck and best wishes for your move .

[dg70]

I see a Rheumatologist privately once a year and extra if a problem comes up. I am on the nhs waiting list but its about six to eight months wait at the moment and maybe more. I had health insurance but it doesn't cover chronic conditions so I cancelled it when I was diagnosed with Sjogrens and Lupus a couple of years ago as it wasn't worth the premium. If you research private consultants in your area via a private hospital like BMI or Circle Health or the Bupa health insurance website you can find a Rheumatologist that has a specialism in autoimmune disorders/Sjogrens Syndrome you then just tell your new GP who you want to see and they write a referral letter to that consultant for you. A private appointment is anywhere between a month to three months wait usually. I pay £150 for about 30 minutes to 45 minutes where I am in the South West of England. Some are up to £250 per appointment. If they require any blood tests or any other lab work then get them to write to your gp or give you a bloodwork envelope to take to your gp and get them done on the nhs. Any lab fees can rack up to £1000.00 per set of blood tests so I get them done for free back with the gp. I see a private eye specialist every year which costs around £200 for about an hour of tests and scans. Hope that helps a bit. Medication is chargeable but you can buy an nhs certificate for a year once you have an nhs number which works out about £108.00 for a year with unlimited medication during that year. If not its £9.35 per item you need. I get eye drops and hydroxychloroquine and mouth wash on prescription. There is a lot of things needed for Sjogrens you can't get on prescription but your gp will tell you what you can get. There are not many with Sjogrens diagnosed in the UK so many practices may not have encountered anyone yet so you may need to fill them in on it. None of the nurses in my practice had heard of it and only one GP had, the same goes with Dentists. As I understand it our private hospital fees are still considerably lower than the US.

[arr_husband in reply to dg70]

Thank you very much for your detailed answer, it is super helpful!

[dg70 in reply to arr_husband]

That's OK. Hope the move goes smoothly. I lived in London until recently. I miss it, you'll have plenty to do on your doorstep.

[ijeasike]

Hi, I will like to add that it may be good for her Dr to write a referral letter, detailing her diagnosis and treatment. Her consultant can search NHS teaching hospital near your new home in London. find the name of the rheumatologist and foward the referral. It will be helpful you they have your new address, that will enable get the correspondence.

This might not be the same because it was moving within the UK. But my consultant referred me to another hospital close to my new home. That will help expedite an appointment with a consultant. (i used St Helier hospital while in London and King's hospital treats my friend). I wish you all the best.

Kind regards

Ije

[arr_husband in reply to ijeasike]

Good advice, thanks!

[Smudge4465]

Morning, Sorry I dont have any personal experience about emigrating to the UK. I live in the Uk and have lupus. This message is just to wish you and your wife all the best. In general we have an absolutely fantastic NHS service. Yes they have some struggles but I cannot praise them enough. Showing thankfulness goes a long way with all levels of staff that to be blunt ‘work their butt off’!! Plus make sure you buy wellies and an umbrella. At times you’ll need it! 😂