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ITP Support Association
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New ITP Patient Coming to the UK :) Help Please

Hi all,

I'm pretty new to ITP (2 stormy months since diagnosis with 1000 platelets).

High dose prednisone, IVIG did nothing good (just bad). On Revolade now, thankfully . so far seems to be having an affect! Now the thing is - I was just starting a new job when this broke out! I need to move to the UK (London) for it. It's a really good job, I worked super hard to get it, and they do offer very good private health insurance.

However, since medical procedures/bureaucracy is very different from country to country - I could really use some pointers to get started on finding the right way to manage this (I am trying to find out what I'm covered for and that's it's sufficient).

For example, in my country: most hospitals have hematology clinics, that also have day-care. They draw blood and get results on the spot just before the appointment with the hemo. Any clinic, and any hemo doctor, can see an ITP patient. The hemo writes recommendations which I then take to my GP (a 'family community doctor') and she follows my case, prescribes according to recommendations any tests needed, prescriptions, and provides general care for me. My national health insurance pays for it. I won't be eligible for NHS in this case, but will have private insurance.

What is the procedure like in the UK to see a hematologist? Are there specialized places for ITP? How and where do you draw blood and who prescribes tests/medicines? Is care available or do I need to try book an appointment months in advance? Do you have recommendations for doctors/blood labs in London?

Any info would be greatly appreciated as I am just starting to learn, and since most sources online relate to NHS, I'm kind of confused here... Thank you!

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Hi BellaMo. I'm in London and attend the clinic at Guys Hospital, London SE1 9RT. It's the Haematology 2 department. They've been brilliant for me so far. I was referred by my gp to get appt. Of course that is through NHS. I don't have experience with private health insurance options but I'm assuming it's similar.

Congrats on the new job and good luck for maintaining steady counts ;)

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Hi BellaMo

I attend the University College Hospital London. It's excellent. Their ITP patients are managed at the haemostasis clinic every Wednesday. You attend, get your bloods taken and are seen by a haemotologist a few minutes later. They see you as often as you need to be seen and medication is collected from the pharmacy there. I am also taking Revolade which has been very successful so far. I'm an NHS patient but I've seen many foreign national there so there must be an option for insurance cover.

I hope you enjoy London, it's a great city.

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I am sure there will be no shortage of good haematologists you can see in London. I live in the north east of Scotland and there is an excellent haematology clinic in my local hospital. I get a blood test every 2 months at my local doctors practice and every 6 months I attend the haematology clinic. I have been taking Revolade for 3 years now and this is proscribed by the haematologist at the clinic. I collect the proscribed Revolade from the pharmacy at the hospital. If it works way up here I’m sure London will be no problem.

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Thank you all for the recommendations and explanations, it helps a lot! Will look into the above-mentioned hospitals in London. Looking forward to starting and getting there :) Thanks!

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Dear BellaMo,

We are all with you. Talk to your doctor, hematologist, family and friends. There may be a way to live as a relatively ordinary kid. See what the limits are. My doctor has told me not to change my lifestyle overly much but I do have platelets that range from 17 to 52.

All the best to you my dear child.

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