Has anybody been able to get the NHS to cover treatment suggested by a doctor abroad?

[Onlyrainbows]

After 10 years of iron deficiency / anemia, I went to a hematologist while visiting my family abroad. He was able to diagnose the reason, and the treatment is basically the same (iron infusions) bit he suggests to always be done proactively rather than wait and see by blood tests. (He's suggesting 6 months intervals, whereas the GI - who's the one treating me under the NHS- is asking the GP to test me every 6-9 months-)

The problem is that obviously if say they test me on month 6 and the results are borderline, I have to wait 3 more months to get retested, and then it's up to 2 months for the iron infusion referral to kick in. Usually those last 3-2 months are a complete agony.

My condition is never going to improve and I'll need iron infusions for life, but the prospect of always having to wait to be within the NHS range, rather than doing it proactively is already making me feel quite low.

Probably not tbh, i'd imagine the gps hands are tied because of guidelines. As someone with persistently low folic acid I know how utterly shit it is, I'd probably beg, borrow it steal to be able to afford to pay for the transfusion privately every 6 months.

It is possible to get iron infusions without waiting to drop into a terribly low range, but you need a very cooperative and supportive doctor. This has been my experience of sorting it out over several years - unfortunately the sensible arguments don't have that much impact on their own.

Keep politely pushing and be patient. It is possible for the NHS to do regular iron infusions.

Thanks @Innocenta that makes me quite hopeful. I'm even thinking of "investing" the £8k on genomic sequencing so I have proof of my condition. As you know, going privately for infusions although possible I'd quite expensive (£1k) and aren't available everywhere, so when I add the travel costs visiting family even though it implies a trans-Atlantic flight seems even more cost efficient!

Years ago I was taken I’ll visiting family in Europe. The GP diagnosed my condition and said that the cause needed to further investigation as it could signify various things. My U.K. GP just said that the medication the GP had prescribed was fine and I could just keep getting it from the NHS although that was just for the symptoms not the cause. A few years later the same GP abroad saw me socially and we were chatting. He told me that as far as he was concerned I was showing all the symptoms of [condition] and if he was my doctor he would treat me for it while awaiting test results and if I didn’t improve then other conditions would be investigated. My U.K. GP refused to even test.

I have now (after going private while GPs were refusing to see patients due to covid) been diagnosed with the condition which has progressed to being pretty bad and could have been kept under control if I’d been put on the medication years ago.

I will now be costing the NHS far more than if they’d been willing to believe the European GP …….

It seems that the U.K. system sees “foreign” doctors as backward but my experience when abroad is that they are much more “on the ball”.

incidentally, I saw the GP (home visit) and had a prescription for just £2 more than the prescription charge was at the time in the U.K. PLUS I saw the GP on the day my family member called. It was a home visit as they don’t want people with unknown illnesses in the waiting rooms. Patients (at least in that area) only go to the surgery for routine type appointments where it is known they aren’t infectious.

yes i have always found doctors abroad are much more on the ball - ,listen to you and recommend treatment not just pills to mask the problem - i wish the uk would adopt the europe way of operating - it is far more efficient - you do not have to jump hoops and press for treatment - and in serious cases of illness their results are far more
impressive especially with cancer care.

lh

@Onlyrainbows do you mind me asking what genomic testing? Perhaps the NHS feels other iron supplements would be enough, iron infusions are not without side effects and risk of allergic reactions that can be more severe than those with oral iron.

Look up haematologists in your local trust. See which ones do private work. See which ones specialise in anaemia, among other things. You probably don't want a thrombosis specialist, for example. With luck, you might get transferred to the nhs under their care.

Meant to say, see the haematologist privately and take the info from the other haematologist with you.

it seems to me that all of this problem should be sorted by the gp - i am tired of people having to jump hoops like i did for a knee replacement. physio - when it is bone on bone no exercises will improve that - diet - and anything else they can think of to stop a surgeon having to be involved to get the surgery you are entitled to - and then the long long wait or pay.

lh

with luck you might get what you need from the gp - this is the wrong attitude - you are entitled to the best care that you personally need.

lh

I'd look up the NICE guidelines for this condition, and check they are following them. Half the time, GPs don't and you have to spell it out to them.

If they are and its just the guidelines themselves then see a haematologist privately and ask for a letter outlining a treatment plan that you can rely on for evidence