Private MPN in Uk

[Mustang50]

Has anyone gone private in the UK for an MPN specialist, have tried getting referrals from my Gp & Haematologist on the NHS because my platelets are good and I look ok, but I do still have lots of symptoms I have ET Jak2+, PV, underactive thyroid and arthritis.

[EleanorPV]

Yes I went private for 1 appointment. I’m in Scotland and saw a MPN specialist in Edinburgh.

[Mustang50 in reply to EleanorPV]

Thanks for your reply did you feel it was worth doing?

[EleanorPV in reply to Mustang50]

For me very much so. Great value for money. Even though I should have been able to Receive this information and reassurance from the NHS. I learnt when your own personal health is being impacted it’s an advantage to have information and reassurance quickly.

[SoledadBarcelona in reply to EleanorPV]

Hi,

Can you tell us the name if this expert, please? I am interested too.

[EleanorPV in reply to SoledadBarcelona]

Dr Mark Drummond

[Aime]

Hi, yes same as Eleanor. Yes, it was worth it as he did far more extensive blood tests and had time to answer all my questions. Aime x

[Mustang50 in reply to Aime]

Thanks so much that’s made my mind up to definitely try and find someone.

[SoledadBarcelona in reply to Aime]

Hi,Who is? Interesred. Thanks

[Aime in reply to SoledadBarcelona]

It’s Mark Drummond I have seen at the Spire hospital in Edinburgh. X😻

[SoledadBarcelona in reply to Aime]

Are you happy with him?

[Mustang50 in reply to SoledadBarcelona]

Definitely not! It’s only phone call appointments at mo and they are rushed

[mhos61]

Are you saying your haematologist and GP are declining a referral to an MPN Specialist? Do you live in England?

[Mustang50 in reply to mhos61]

Yes I’am and yes live in Suffolk in the UK

[mhos61 in reply to Mustang50]

Have you tried asking your haematologist as well as your GP?

I would put a request in writing. Be diplomatic, but also advocate your case. I asked for a referral through my haematologist. I stated that as MPNs are rare it was in my best interest going forward to have the input of a MPN Specialist in my healthcare plan.

I think if I had asked my GP I may have had a similar response to yourself. You certainly shouldn’t be made to feel guilty about money being ‘tight in the NHS’. Of note, the GMC state that doctors must ‘respect the patients rights to seek a second opinion’. You could use this as a point of argument if you’re continued to be declined.

[Wyebird in reply to Mustang50]

I believe you are entitled to a second opinion. I suggest you get a list of MPN specialists from Maz and then request to see the one of your choice. If refused contact PALS. X

[Mazcd Partner MPNVoice in reply to Wyebird]

Hi Wyebird, I am sorry, but we don't have a list of haematologists. Maz

[Wyebird in reply to Mazcd]

Thanks so glad you told me. I thought you did

[Titatagg]

Hi I started out as a private patient and saw two renowned Haematologist in London . However neither were experts in MPN and couldn’t diagnose me past I was Jak2 positive therefore I had an MPN .They couldn’t classify which one therefore I had no treatment plan. . After researching I opted for a second opinion referral through the NHS . All NHS patients have the right to be offered this. I had researched and found Prof Claire Harrison at Guys in London. I had to wait 4 months but within two appointments I had a full definitive diagnosis and treatment plan . That was 12 years ago and I am well and leading a full life. My BUPA health care plan does not cover me for a chronic condition which PV is classed as but also Prof Harrison does not take Private patients . Best decision ever ❤️NHS

[Mustang50 in reply to Titatagg]

Thank you so much! I have put this to my GP she is saying that because my platelets are under control and money is tight in the NHS she hasn’t got enough evidence to send me, I feel I’m not getting the help with the haemo I’m with now, platelets are under control but old symptoms coming back and he is choosing to ignore it.

[Jules153 in reply to Mustang50]

I’m having the same problem,according to my GP the haemo I was seeing is a specialist and I don’t need to see anyone else.

[Mustang50 in reply to Jules153]

So sorry your having the same trouble it’s so frustrating! I’ve always had the problem that I look so well when I see them, but they don’t get to see me after work/ end of the day, through the night and in the mornings, please keep in touch and let me know how things go.

[Jules153 in reply to Mustang50]

Will do and good luck.

[Mustang50 in reply to Titatagg]

Prof Claire Harrison is exactly the person I would like to see but as you say doesn’t take private patients .

[SoledadBarcelona in reply to Mustang50]

Why?

[Mustang50 in reply to SoledadBarcelona]

Because she is nearest to me and heard good things about her.

[JP1952]

Hi, I managed to see an MPN specialist by directly contacting them myself, by email to their secretaries or PA . I briefly outlined my details and reasons why I needed a second opinion. Both specialists agreed to see me and I chose the nearest because it was in lockdown . This was done under NHS , as neither of them took private patients anyway.Once athey agreed to see me I had to get a referral from my haematologist but it was a "fait accompli" .

Best thing I ever did.

[Aime]

Hi, what a carryon everyone is having to get an expert opinion. I’ve had left sided pain for several months, had two ultrasounds under nhs, which I’m grateful for, but the last one with the consultant was not a pleasant experience. To put it diplomatically, he was an a…….., with no bedside manner.

To be fair, my spleen seems to be an ok size but I’ve developed a couple of lumps which my gp thinks might be hernias. I am going for a private CT as waiting times on nhs, according to my gp, are horrendous and he couldn’t say how long. I know I’m lucky the ultrasounds look ok, as far as size of organs go but lumps concern me. I got a phone call yesterday, so CT is on Monday. I’m lucky I know to have taken out health insurance many years ago but my concern is that so many people are not being investigated, unless there are a few red flags, that there will many not diagnosed until it’s too late.

Take care everyone and don’t stop nagging if you think you should be seen! Aime x😻

[Mustang50 in reply to Aime]

Do hope your sorted soon!

[Otterfield]

You really shouldn't have to go private. We have rare diseases and are entitled to a second opinion on the NHS. Pursue it through your haematologist. The NHS is obviously free at point of use but you have paid through your taxes.

[Wildwood6]

I was diagnosed with primary myelofibrosis earlier this year. I live in London so have reasonably easy access to private doctors. I decided to seek a second opinion privately. I am seeing a specialist at London Haematology, based at the London Clinic in Harley Street. They have several haematology consultants who list MPNs as areas of specialism. UCLH, near Warren Street and Euston, also list a large number of haematologists and 2 who specialise in MPNs.

[Mustang50]

Brilliant thank you so much guessing I just need to phone or email, so grateful of your help!

[Squash_60]

There are a team of NHS MPN specialists at Guys hospital in London. I asked my local haematologist to refer me and she did. X

[Mustang50 in reply to Squash_60]

Thank you!