MPN Specialist Kent

[Heather270240]

I have PV JAK2 diagnosed 2017. I have been under the care of Maidstone Hospital but would like a second opinion. I live in Maidstone Kent. How do I find an MPN specialist in Kent please.

[Tess74]

Hi Heather, there's a list of MPN specialists here, I'm not sure how close any are to you as my geography is rubbish (scroll down for UK specialists) x mpnforum.com/list-hem/

[Heather270240 in reply to Tess74]

Many thanks. The nearest is London Guys which I don't mind if I could get a referral.

[KentBee]

Hi, I also live in Kent and see a Heamotologist at WHH, I don’t know of a MPN specialist any closer than London but would be interested to hear from anyone who has more info.

[Heather270240 in reply to KentBee]

Hi. Where is WHH? I will certainly let you know if there is one in Kent.

[KentBee in reply to Heather270240]

It is William Harvey Hospital in Ashford. For the past year I have had telephone appointments which suits me now that my levels are stable.

[Heather270240 in reply to KentBee]

That's good they are stable. What meds are you on? I'm on hydroxycarbamide and platelets rising 723 but nurse when she last phoned now in December said it was OK. Even GP is concerned but not sure what to do.

[KentBee in reply to Heather270240]

I am on 9 X 500mg Hydroxycarbamide a week, Aspirin and Indapamide.

[Heather270240 in reply to KentBee]

I am on 7 x 500 and can't take any more because they cause breathing problems which is a known side effect of Hydroxycarbamide but according to Haemo it's not hence the reason why I want a second opinion. Even Respiratory Consultant said it's the Hydroxycarbamide.

[ciye in reply to Heather270240]

My haematoligist is the same, the respiratory clinic and practise nurse say it is. She think chronic fatigue is an ET symptom either.

[Heather270240 in reply to ciye]

I find it very worrying that haematologists won't accept that HU has such serious side effects. I have had them for 4 years admitted to A&E 4 times urinary, Respiratory and A&E consultants all said it was HU and on my last visit consultant said I had to stop it because it was affecting my heart. Haemo still won't accept it and sent me off for yet another ECG last week. She's not happy because I have been referred to Prof Harrison. As soon as I told Prof Harrison my symptoms she said I was right in stopping it. Not everyone can tolerate it. It was a joy to my ears!!

[Toblerone18]

I also have PV and JAK2 positive. I was diagnosed at Tunbridge Wells hospital and referred to Guy's in London under Prof Claire Harrison and Dr Robinson. I've only had a couple of face-to_face appointments because I was diagnosed just before the pandemic, but it's only London Bridge so very accessible from Kent.

[Heather270240 in reply to Toblerone18]

Interesting that TW actually referred you to Guys. We are the same PCT but Maidstone Hospital won't refer me despite the fact that my haemo appears to know very little about PV.

[Toblerone18 in reply to Heather270240]

That is strange. My haemotologist at TW is Dr Gale. I believe he referred me to Guy's because I was JAK2+ but my platelets were actually close to the normal range so he wasn't sure what that meant and wanted Prof Harrison's expertise.

[Heather270240 in reply to Toblerone18]

I am also a JAK2 and my platelets are 723. What meds are you on,?

[Toblerone18 in reply to Heather270240]

My platelets are generally around the 400 mark. I'm on 75mg Asprin daily as well as daily fragmin injections because I'm pregnant

[Heather270240 in reply to Toblerone18]

OK thank you. That's why he probably referred you because you are pregnant. A very sensible Haemo.

[Toblerone18 in reply to Heather270240]

Oh no, I wasn't pregnant at the time. I was diagnosed about six months before I got pregnant.

[Heather270240 in reply to Toblerone18]

Apologies I misunderstood. Lucky you for being referred. My haemo won't she said I can't be referred out of Kent.

[mhos61 in reply to Heather270240]

Well, that’s a load of rubbish!

You can be referred anywhere within the NHS, either for a second opinion, or for a complete transfer. I’m considering it myself when Covid calms down🤔.

[idi75]

I have had to go to London too. I couldn’t find anyone MPN specialist locally. Venesection had to be done in London too. Fortunately I don’t need them very often.

[Little-friend-Susan]

It depends what you call a specialist. I am treated at Kent and Canterbury but I think the nearest specialist is at Guys.

[Heather270240 in reply to Little-friend-Susan]

That's what I am beginning to think Guys is the nearest. On the other hand if you have a haemo who is willing to listen to you and takes on board your concerns that's OK. Unfortunately mine is not.

[AirconBob]

Hi. I am in Dartford and have had jak2 pos PV for 6 years. I can confirm Prof Harrison at Guys is superb, but at the mo I am just controlling with Venisections and Hydroxy, so don't need to make the trek to Guys, but understand the locals do not have the specific expertise. I worked out that statistically our local hospital would have 6-7 MPN patients, so won't have much call for a specialist, Now the older consultants are retiring specialists are becoming harder top find. Once diagnosis is confirmed then it is a matter of keeping counts on track and watching that things have not progressed.

[Heather270240 in reply to AirconBob]

Many thanks for your reply. Have you always been with Prof Harrison or did you get transferred and if the latter who arranged it. At present I can't get anyone to refer me.

[AirconBob in reply to Heather270240]

Hi. I am not with prof Harrison as such, but I have done studies and attended various events with her and the team from Guys. At the moment I am 'under control' so don't feel the need to bother them. If things change I would request a referral from my GP. Meantime I am quite happy with the cancer unit at my local with whom I am becoming worryingly familiar....

[Heather270240 in reply to AirconBob]

So you would get your GP to make a referral to Guys rather than Darenth Valley. My Haemo won't because she says it is outside of Kent. My GP is sitting on the fence and afraid of stepping on any ones toes that's why I was hoping there was going to be a specialist in Kent.

[Inclement]

It seems to me that the list of MPN specialists often referred to on this site only shows recommendations from other forum members so is by no means complete. Is there a national UK register available? For example I attend the MPN clinic at Addenbrookes in Cambridge, so assume they are 'specialists' as far as one can define that.

[Rem31]

After 4 years of being treated by my local general haematology department I became less and less confident about the level of care. There were a number of growing concerns and so I spoke to my named GP and asked for a referral to a specialist mpn team at another hospital out of my area/county. My GP argued against my reasons and at the time I wasn’t up to having an argument so dropped it. The continuing situation and my GP’s attitude bothered me so a couple of months later I had the same conversation with another GP in the practice who understood my concerns and immediately referred me to the specialist mpn team I requested.

Based on my patient experience I can say there is a very noticeable difference between a local general haematology department and the specialist mpn team and I’m so glad I made the move. That was 3 years ago now.

Being able to trust the expertise of those treating us is such a vital part of being able to cope with a mpn. It lifted so much of the nagging worry.

I’m wondering why you are refused a referral outside of Kent. Maybe something has shifted but when I changed I was told I had a choice about where I could be treated.

[Heather270240 in reply to Rem31]

Many thanks for your reply your comments are very useful. Not sure why the haematologist at Maidstone Hospital won't refer me but I won't let it rest. My GP knows I am not getting suitable care although his knowledge of MPN is limited. I am very tempted to contact Dr Harrison at Guys and ask how I can be referred to her. If she says through either my GP or Haematologist I will tell her they won't and see where it goes from there. Where are you being treated at present?

[Rem31 in reply to Heather270240]

I think your best route is through your GP. It simply never occurred to me to ask the local haematology department to refer me.

I’m with Guys. Their clinics (pre covid) are really, really busy but I just feel privileged to be under their care.

[Heather270240]

Many thanks for your help. I will go through my GP as you suggested.

[Maisie10]

Hello I am with Maidstone hospital under Dr Gale and the whole team there have been brilliant with me. I have PV jaks 2 +. I am on Hydroxy and aspirin with 3 monthly venesections which keep my bloods under control. I am sure if you have any concerns speak to the consultant there. Take care

[Heather270240 in reply to Maisie10]

Hi Maisie10. Unfortunately I have had some serious side effects with HU, breathing problems and urin retention which my consultant Dr Dimitriadou will not accept are as a result of HU. My GP phoned her and she was adamant HU was not the cause and said I should stop taking it which I did and breathing returned to normal but I do not have a replacement medication. My platelets today are 777. Caroline one of the nurses said if I wanted something different I would have to go to London so my doctor has referred me to Dr Claire Harrison. You seem to be lucky in finding an understanding consultant. I have never heard of Dr Gale.

[Maisie10 in reply to Heather270240]

I am pleased for you that you now have been referred to Dr Claire Harrison. Dr Gale practically saved my life as my bloods were extremely high. Carolyn has looked after me as well. I have no side effects from hydroxy which I am lucky. I know Dr Gale works closely with Dr Harrison as in the beginning of my diagnosis he spoke with her for advice. My platelets have always been fine it’s my red and white bloods that are always high. Take care and I hope you get on well. Keep us posted.