Treatment in Wales for Primary Myelofibrosis

[afonog]

Has anyone here been treated at Glangwili Hospital in Carmarthenshire

[JediReject]

Hello afonog, , I'm in Blackpool so no real help but what I can tell you from my experience is that it would be of benefit to see an MPN Specialist for PMF. By all means give your local hospital a chance to impress (you might be lucky and your Haematologist might be clued up) but try and find out if there is a specialist within an hour or 2 travel.

Best of luck -Chris

[afonog in reply to JediReject]

So far, mis measured spleen, said it was 33 cm it's 22. Mislaid ldh results so have to do anothe test. Forgot for 3 wks to write to rhopaedic surgeon o give ok for a different op. Have not discuss d any treatment option going forward. I've been reasearching jakafi, Pegasus, etc and possible trial inclusion.

[babbittybumble in reply to afonog]

Hello I know there is a very good Haematology department in Cardiff Heath Hospital. You need to see a Doctor that understands these MPN disorders , ask your GP to refer you there. Its not too far from Carmarthen . As far as I know Glangwili does not have a specialist unit there. All the best Gill

[eire]

Agree totally with Chris you need to see an MPN specialist. The spleen is large and it's a worrying diagnosis until you've been given good solid advice. I go to a specialist hospital every 6 weeks which is 3 1/2 hours away - exhausting but so worth it. My local hosp is a back up for blood transfusions or I can see the haem if I have any worries. Over the years I've built up a great rapport with both hospitals!!!! It's really good to see the same staff who know you very reassuring. If you do need to travel to a good consultant maybe you could suggest going to your local hospital for blood checks. In this day and age it's very easy for hospitals to keep in touch. I've heard Cardiff is v good for Mpn.

Pat

[Hmc1]

Hi one of my family is being treated for MF in Withybush hospital Haverfordwest.

[jane13]

Hi I live near Narberth. Was initially treated at Withybush but now at Swansea where there is a specialist department. The lead consultant is good (Dr Al Ismael) but the clinics are enormous and you don't always get to see him. However they are quite good at identifying the patients he needs to see. Also if you need Ruxo then he knows the process well. The parking is bad but not as bad as Glangwili! I use the swimming pool about 100 yds away! I don't know what the haem dept at Carmarthen is like. Good luck.

[Hmc1 in reply to jane13]

Hi Jane,

Can I ak why you went from Withybush to swansea. Did you request second opinion or were you referred by consultant? Glad you are happy with care and hope you are doing well.

Kindest regards

Becky

[jane13 in reply to Hmc1]

gp and i discussed my experience at withybush and he agreed to refer me to swansea instead!!!

[afonog]

Thank you all. I'm going to ask for a referral to Dr knapper in Cardiff who has worked with Claire Harrison at Guys. My gut feeling was that we should see a specialist so I feel better knowing that I'm not barking up the wrong tree.

[jane13 in reply to afonog]

have seen dr k - liked him and he knows what he's on about. however be aware that in wales u do not have the same rights as in england re choosing where u r treated.

[afonog in reply to jane13]

Consultant said d she's happy to refer us us to knapper. So fingers crossed.

[Garden987 in reply to afonog]

Referral to Dr Knapper.Hi afonog. Very interested to hear about your referral to Dr K. Have you seen him yet and was his treatment different from that of your consultant. I see Dr Anderson at the Gwent but don't know if she is an MPN specialist. Your input would be very much appreciated...Hope things are working out for you. All good wishes. Mary

[afonog]

Steve Knapper was fantastic. Just as Becky and Jane13 both said. He was clear and informative, took ages talking to Steve and made sure there was aplenty of time for questions. Also seeemed a really decent chap. We've had a bit of a bumpy road so far but we both felt much better and more positive after seeing him and are incredibly glad that he's going to be part of Steve's care team. I emailed him on Sunday evening and had a response by 830am Monday morning. Unlike Glangwili, where I emailed two people on Monday night and haven't even had an acknowledgment of receipt of my email by close of play Tuesday night.

One of the most difficult things we have had to deal with is lack of information and response to direct questions.

I asked for a referral to Cardiff in January when Steve was first diagnosed and I cannot tell you how much I wish I had pushed harder for the referral more quickly. I think it would have gone a long way to reducing the incredible stress of the past 5 months.

Mary, push like mad to see Steve Knapper it's really worth it. Wish you well and wish you luck. X

[Splb3317]

Hi, my haematologist is based in the Swansea area. He and the team are efficient, helpful and only 2 days ago, my MPN specialist nurse rang me to give me my latest blood results. My platelets are right down and I already have the date for my next blood test. I have only praise for the Wales NHS. I am aware of Dr Knapper in Cardiff but am very happy with my present consultant. My GPs are also helpful and efficient. Oh Dear!! This is beginning to sound like a Wales song of praise!! All the best to everyone. Let's hope this lovely weather keeps going. Sandra.