Consultants - are there any and is it more benef... - MPN Voice
Consultants - are there any and is it more beneficial to find one who specialises in MPD's?
Depends where you are, if you can get to London, Guys Hospital has an excellent MPD Cllinic. I think you can request to see them even if you don't live in London. Ask your GP. I've heard of someone who saw them as well as their local hospital. Good luck.
Professor Green and his team at Addenbrookes Hospital, Cambridge.
I would say it is extremely important to see a specialist in MPN's at least once or twice a year.
Here are some in the UK I know of:
Dr David Bareford
Consultant Haematologist
Department of Haematology
Russells Hall Hospital
Dudley
West Midlands DY1 2HQ
Dr Nauman Butt
Dept Of Haematology
Arrowe Park Hospital
Arrowe Park Road
Upton, Wirral
Dr Peter Campbell
Department of Haematology
Cambridge Institute of Medical Research
Hills Road
Cambridge CB2 2XY
Dr Eibhlin Conneally
Consultant Haematologist
Department of Haematology
St. James Hospital
James Street
Dublin
Professor Tony Green
Professor of Haemato-Oncology
Department of Haematology
Cambridge Institute for Medical Research
Hills Road
Cambridge CB2 2QQ
Dr Georgina Hall,
Consultant Paediatric Haematologist,
Paediatric Haematology – Oncology Unit,
John Radcliffe Hospital,
Headley Way, Headington,
Oxford. OX3 9DE
Dr Claire Harrison
Consultant Haematologist
Department of Haematology
St Thomas’ Hospital
Lambeth Palace Road
London SE1 7EH
Dr Guy Lucas
Department of Haematology
Manchester Royal Infirmary
Manchester M13 9WL
Professor Christopher A Ludlam
Professor of Haematology & Coagulation Medicine
Director Haemophilia & Thrombosis Centre
Department of Haematology
Royal Infirmary
Little France Crescent
Edinburgh EH16 4SA
Dr Mary Frances McMullin
Consultant Haematologist,
Department of Haematology
C Floor
Belfast City Hospital
Lisburn Road
Belfast BT9 7AB
Dr DG Oscier
Consultant Haematologist
Department of Haematology
The Royal Bournemouth Hospital
Castle Lane East
Bournemouth BH7 7DW
Dr. Deepti Radia
Consultant Haematologist
Department of Haematology
St. Thomas’ Hospital
Lambeth Palace Road
London SE1 7EH
Dr John T Reilly
Consultant Haematologist
Department of Haematology
Royal Hallamshire Hospital
Glossop Road
Sheffield S10 2JF
Dr. Grant Robinson
Pathology Chief of Staff
Department of Pathology
Nevill Hall Hospital
Brecon Road
Abergavenny NP7 7EG
Dr Jonathan Wallis
Consultant Haematologist
Haematology Department
Freeman Hospital
Newcastle upon Tyne
I would agree. I saw Dr Lucas privately in Manchester ( he's now retired by the way) when I was first diagnosed, because my haematologist was unforthcoming with any information re pv.
I think he (my nhs haematologist) expected me just to accept what I had, not to question him, the medication or what it was doing to me, or his prognosis - a rather brutal - "we can keep you going for 10 years probably, but after that we don t know, and you may or may not get leukaemia or progressive myelofibrosis. ".
I intend to prove him wrong by the way and live until I'm well into my dotage.
This chap, who I do think basically knows what he s doing, but is far from a specialist in
mpd 's, told me that his polycythemia patients were his bread and butter and that he has hundreds on his books, despite the fact that I haven t yet come across even one!
He obviously wasn't t used to patients who said, " hang on a minute......." and got very uppity when I said I wanted to see someone privately, and therefore have an hours consultation and not the standard 10 minutes.
Rather like treading on eggshells.
I received no information re diet, alcohol consumption, exercise, lifestyle, how to cope with the dreaded pruritis, nothing I 'm afraid.
Be your own project manager I would say, read as much as you can, keep a daily diary listing activities and diet, and then summarise what works for you, and what doesn't.
Be aware that pv ( I don't know about the other mpd s ) can be a constantly changing condition, and monitor your own health.
Couldn't agree more Rosieclaire. I had a similar experience with the haematologists (used to see a different one almost every appointment) at my local hospital and I have now moved to another haem who specialises in MPN's but more importantly listens to me as an individual and isn't so defensive when I ask questions.
I believe it is incredibly important to develop a good working and mutually respectful relationship with your haematologist.
i have the best consultant going her name is dr farqharson she is at the western general hospital we get on really well a great patiient if there is something i do not know i ask her i saw her before she got her promotion i was going in for brain surgery she wrote to nuerology with things they will need to do and then she gave me a cuddle not many would do that
Hi, agree with previous answers - my husband was diagnosed a year ago with primary myelofibrosis and basically told by the haemotolgoist to get on with it - regular blood transfusions and a decline over 18 months or so until he died. I recommend Dr Claire Harrison at Guys and St Thomas' Hospital in London (details already given in previous post). She is marvellous. She is doing drug trials on MPDs, is a driver of this forum too, and referred my husband to the Royal Marsden for a stem cell transplant - his only option for curative treatment - an option which was ruled out immediately by the orignal haematologist (who by the way was paid - we were private patients at the time. MPDs are relatively rare - get yourself seen by an expert. And good luck.
London region I would recommend Guys hospital London, where they have an excellent MPD Cllinic. Supportive and forward thinking team
cataract surgery with MPN any one else had this done
Would any one being treated for an MPN at the Churchill Hospital, Oxford like get in touch?
