Specialist

[Birdlady2021]

Hi anyone know of a MPN specialist in Kent U.K. area please ?

[Wyebird]

Maz will be able to give you a list. Writ to MPNvoice.org.Uk How far are you from London?

[Birdlady2021 in reply to Wyebird]

About 50 miles

[Wyebird in reply to Birdlady2021]

Have you considered travelling to London and being under the care of Guy’s hospital?

[Birdlady2021]

I have thought about it but there’s a long wait

[Wyebird in reply to Birdlady2021]

I’m not surprised, maybe it’s worth going on the list anyway. Meanwhile I’m sure Maz will help you with a list. Good luck

[Maisie10]

Hello. I live in Kent and see Dr Gale in Maidstone hospital and he has been brilliant with me. Take care x

[Birdlady2021 in reply to Maisie10]

Hi Masie, Do you live in Maidstone ? I’m in Sittingbourne and see Dr Mendis well last 18 math been blood tests and telephone calls , I do have a job understanding her over phone ! She’s just put my hydro up 10 a week and had to come off clopilidrell blood thinner due to bad nose bleeds Till I see Ear nose and throat privately how are you getting on ?

[Maisie10 in reply to Birdlady2021]

Hello Dilly. I have not seen dr Gale for around 2 years. He has phoned me and I also see the haemo nurses at the hospital as I need venesection every 3 months. I am on 12 hydroxy a week with daily aspirin. I have PV Jaks 2 + diagnosed in aug 2015. If I needed to see him I would just contact them. They are really nice there and would trust Dr Gale . He is also in pembury hospital. Hope this helps. X

[Dillyv50]

Hi, I live in Medway and see a consultant at Medway hospital. I asked my GP to refer me to Guys to see a specialist, which she did. I now have an arrangement where I see my local haemo every 3/4 months and have a check in with guys every 12 months or if needed. This is a new arrangement but I'm hopeful that it will work as my local haemo is fine but I wanted access to specialist advice also. I have ET jak 2 and take aspirin only at the moment.

[Birdlady2021 in reply to Dillyv50]

Hi Dilly I’m ET and jam 2 pos never had a BMB not that I want o e I used to see Dr Chia but he left I now have Dr Mendis Medway is so busy trying to cope with all areas hospital isn’t big enough to cope in these busy times with a very high population .I have gone on to aspirin alternate days at the minute

[Little-friend-Susan]

I live in Sittingbourne and have been treated for the last 12 years by the haematologists at Canterbury. I have ET calr with no complications so have been happy with this arrangement but I am also very hard of hearing and I find telephone consultations almost impossible. My GP is writing to ask for face to face after all I go to the hospital for blood tests before each appointment. If you need a specialist I would say go to Guy.

[Birdlady2021]

Hi Little friend Susan ,Thank you for replying , yes I’m ET jam 2 positive since 2015 I’m hard of hearing and have 2 aids when I wear them 😂 I can hear better but there not great with having to wear masks on and off 😀Do you see Clair Harrison at guys ? I have to say I’m not great at all with hospitals and get very anxious

[Little-friend-Susan in reply to Birdlady2021]

Hello I don’t go to Guys but I understand it is the best place if you want to see a specialist. I was fine before all the Covid-19 precautions but now I find the telephone consultations almost impossible.

[Birdlady2021 in reply to Little-friend-Susan]

Morning , yes I also think there’s a waiting list to see Claire Harrison ,I’m not happy with all telephone conversations ,going forward now when we should be able to see consultants face to face with percentage of us have been vaccinated

[Dillyv50]

I have been to Guys twice since I was referred, I didnt see Claire Harrison in person but both times the haemo went off to check things with her before deciding on how to proceed. My dr at Medway is Dr Osman. I haven't actually seen her yet as its phone consultations only.

[Oscarsboy]

Hello, I am under Darent Hospital and in care of the Haemo team there. I have had a one off referral to Guys to see Professor Harrison, but am looked after by the team at Darent. I have not seen a Consutlant there, although have had telephone referrals from them and another due later this month. The team monitor the bloods and make any adjustments necessary. I am ET Jak 2 and can only say that so far they have looked after me very well. My referral to Guys was made by one of the Consultants on that team.

[Birdlady2021]

Thank you for your reply , hope all’s well with your treatment your having 😀

[KentBee]

Hi, I live I Tenterden Kent and see a haematologist in Ashford, on 9 Hydroxycarbamide a week, aspirin and platelets stable.

[Birdlady2021 in reply to KentBee]

Hi kentbee , your in a lovely part of Kent , I’m on 10 weakly now is your aspirin soluble ? I’m not keen but had to go on this since clopidrell after 4 years on it gives me bad nose bleeds I also need a blood thinner because I have a leaky heart valve … Thank you for your reply

[KentBee]

Yes, I take soluable aspirin and Hydroxycarbamide. A belated Happy New Year yo everyone from sunny Kent.