Anyone know good haematologist specialising in PV in Surrey/Hampshire/Berkshire area please?

[jaxwanne]

I’m new to the site and am being referred to haematology but I wondered if there was anyone who may be particularly interested in PV in my area that someone may recommend?. It is only now sinking in that I carry PV gene, but also have haemophilia gene! One causing risk of clots, the other means my son is at risk of frequent bleeds. All quite bizarre. Still slightly reeling from diagnosis to be honest!

[hunter5582]

Just to make it more complicated, the JAK2 mutation can raise your risk for both thrombosis and hemorrhage, as well as microvascular symptoms. The hematologist will do some more specific testing to outline your specific situation. It will likely include a von Willebrand Panel and Prothrombin Times.

Most hematologists have little to no experience with MPNs. Optimal MPN care is received through consultation with a MPN Specialist. Consultation with a MPN Specialist is even more important given your genetic profile. Here is a list.mpnforum.com/list-hem./

All the best to you as you embark on this journey. Know that it will be a long one filled with learning opportunities. If you share what you learn along the way, we will all benefit from what you learn.

[jaxwanne in reply to hunter5582]

Many thanks for your reply. That was very helpful. Oxford would be the nearest for me I think.

[Anniepops112 in reply to hunter5582]

Sorry to jump on post. Is it possible in the UK to request to see the MPN specialist rather than the consultant haematologist on the day? Just looked at the map and the closest one to me is not the hospital where I’m currently monitored. I find them so hit or miss, and sometimes quite dismissive. My ET is stable so atm not concerned but would be good to know how it works

[jaxwanne in reply to Anniepops112]

Hi, the answer is that if your local care group does not provide the service you require, they can refer you on, if they think it’s appropriate. Obviously because they have to pay for services, they may decide that the specialty in your area is sufficient and turn down request! I had that a few years ago when I was referred for an unrelated condition, by my consultant! He was quite shocked! But it’s always worth a try and with MPN being rare, it may be considered vital services.

[hunter5582 in reply to jaxwanne]

I would add the this that in all healthcare systems access to services is related to how assertive you are. Assertive patients receive higher quality care. Passive patients do not. Knowledge of how to work within the system matters as well. There are mechanisms in place to both control access to care and to facilitate it. You do need to know which levels to pull to make things happen. Sometimes a referral will happen at your request. If not, then you have to refuse to take no for an answer. This is something that is true in many healthcare systems.

A couple of key points to quality MPN care when your local office does not have a MPN specialist. Identify the local doc who has the greatest expertise and is the most compatible to working with you and an outside MPN Specialist. Insist on always seeing this doc. Then periodically consult with the MPN Specialist who can advise you and the ongoing hematologist on your MPN care. This is precisely how I manage my MPN care. The arrangement works great.

FYI - any doc that is dismissive of your condition of concerns should be fired from your case. That is not acceptable behavior in any provider.

[liarose in reply to hunter5582]

Can I ask what the micro vascular condition you mention is please

[hunter5582 in reply to liarose]

The MPN mutations can cause problems with how the blood cells interact with the blood vessels / vascular endothelium. Microvascular-related symptoms can include headache, vertigo, tinnitus, dizziness. erythromelalgia, pain in feet/toes (particularly the big toe), and more. These symptoms are often more bothersome than thrombosis, which many of us never experience. The good news is that microvascular symptoms can be very responsive to the appropriate treatment. Aspirin is sometimes all that is needed.

[Wyebird]

Oh bless you. It’s a lot to take in.Anyway a big welcome to the group. I’m sure Maz on MPN voice .org. Uk will help you xx

[Mustang50 in reply to Wyebird]

Which section on MPN voice .org do you go on to contact Maz I have tried and haven’t been able to contact her, prob just me 🙈many thanks!

[piggie50 in reply to Mustang50]

Click on ‘chat’ at the top of the page, this will bring up a private message click on compose and put Mazcd into the to box.

[Mustang50 in reply to piggie50]

Thanks so much!!!

[Wyebird in reply to Mustang50]

Glad you got the info you required. Sorry in the delay replying but no signal or WiFi unless I walk to pub!!! Have you got a consultant now?

[Mustang50 in reply to Wyebird]

No consultant as yet, I’ve messaged Maz a couple of times and haven’t heard anything not sure if it’s going through, which is why I asked if there was a set way to do it from not receiving answer from first message.

[Wyebird in reply to Mustang50]

She is very diligent maybe she is in holiday . I can see you have received some good info from others at the hospital so good luck

[Otterfield]

Ideally you need an MPN specialist as PV is one of three diseases classed as MPNs. I don't know of a specialist in the area but I do know that the haematology department at Southampton is very large. I have just been there for a consultation for a possible stem cell transplant and I wouldn't be surprised if there was an MPN specialist there.

[Helpatlast in reply to Otterfield]

There is i am under Southampton General Hospital all the team very experienced in MPNs if you are near enough to travel to SGH you will find a kind caring team

[jaxwanne in reply to Helpatlast]

Thank you, that’s good to hear! We can certainly get to Southampton.

[Helpatlast in reply to jaxwanne]

Good you will find them excellent !! Leave yourself plenty of time for an appointment, parking in the hospital there is hardgoing as it's a very busy hospital! At the moment still only one person, the patient in as well unless someone needs assistance, but very nice Costa etc in the complex so pros and cons!! All the best

[Otterfield in reply to Helpatlast]

Can I jump in and ask whether there is a slightly less busy time of day to arrive for parking? I think I will need to come many times and we are travelling from West Dorset. This week we stayed at the Premier Inn on Romsey Road and walked but I don't think that will be practical every time, especially for follow up appointments post transplant (if I have it...). Thanks.

[Helpatlast in reply to Otterfield]

A first thing in the morning appointment could be handy for car park although surrounding area is so busy with rush hour traffic 🤷🏼‍♀️🤷🏼‍♀️ Usually afternoons are busy because of clinics and visiting but at the moment there isn't visiting generally so may be an afternoon, even in normal times later afternoon is a bit better but it can be a bit of gamble, the best car park is the orange car park the big one as you go in the main entrance on Tremona Road and use the top level - but it is advisable whatever time of day to leave good time prior to appointment to park and if it's then a good day at least there is couple nice cafes and few shops in the hospital to be occupied !! Must admit I haven't gone too much in the last year as they have kept a lot of our clinic out and using phone appointments but I have had scans in recent weeks and was pleased that the car park wasn't as manic busy as pre pandemic but still busy. It's also a very good hospital for Covid control too which is nice to know. All the best with your future treatments will be thinking of you, but you are in good hands at SGH

[Otterfield in reply to Helpatlast]

Thank you, that's really helpful information. We are a bit anxious about parking as my usual hospital is the very small Dorchester Hospital. Southampton Hospital is like a huge metropolis to us!

[jaxwanne in reply to Otterfield]

Yes, car parking is a nightmare there! I trained as a nurse at Southampton Uni and used to park in roads surrounding hospital and walk in. But recently been there with my daughter and grandson for his heart condition and was shocked at how much busier it has become. The best solution is to have someone drive so you can jump out and go to appointments!! My husband dies that while we go in. But of course that’s not always possible!

[Helpatlast in reply to jaxwanne]

Yes theres no parking in surrounding roads now its all permit holders, a few pay slots just in Tremona Road but not much good as its meters and you never know how long you may be in hospital. The good thing is its a super good hospital!

[jaxwanne in reply to Helpatlast]

It certainly is ☺️

[Anniepops112 in reply to Otterfield]

I went to uni in Southampton many moons ago! The bus services are really good.

Have you looked on one of the parking app likes Just Park where people rent out their drive space? I quite often do this for hospital appointments as I just find it much less stressful than hoping there’s a car parking space available.

[Otterfield in reply to Anniepops112]

Sadly buses would be out of the question. Even now, being immunosuppressed, I am wary, but after a transplant I would have to avoid all enclosed spaces with other people. However, Just Park sounds like a great idea - thank you, I didn't know about it.

[Helpatlast in reply to Otterfield]

No definitely no buses at all around Southampton , they aren't great prepandemic, defo not now in all the residential areas around hospital as they have tended on higher Covid rates throughout. You will be able to park at the hospital no problem just leave plenty of time prior to do so and the car park is two mins from hospital main entrance and the upper level I mentioned is all open air x

[Otterfield in reply to Helpatlast]

That's reassuring, thank you.

[Rachelthepotter]

Hi. The clinical haematology team at the Royal Surrey Hospital in Guildford are good for MPNs - can’t recall or find the name of the lead ( I’m having a foggy few days) but its a Dutch /Afrikaans sounding name. Good luck, and keep in touch.

[Rachelthepotter]

PS My own experience of Oxford ( pre Covid) wasn’t a good one : phones not answered , meds prescribed not ready at pharmacy, etc. Shambolic. Lovely Australian CNS almost but not quite made up for it. So I switched to UCLH in London. Am about to move to Edinburgh, and when (if) I do, I’ll ask here for names.