After reading your many interesting and useful entries regarding ET in particular, I wondered if anyone has experience of NHS health care for this condition, living in the Lytham St Annes/Blackpool area?We will soon be moving to the Fylde Coast from Birmingham after retirement and naturally I need to prepare for health care with an as yet unknown NHS Trust.
Any information will be gratefully received.
Hello, I'm in Blackpool. I was under the Haematology unit at our main hospital Victoria for a number of years. I'm not aware of an MPN specialist in residence but it's been a long time since I was a patient. There are no other hospitals of any size in the immediate area, the nearest being in Preston some ten miles or so but again I don't know if there is a specialist. However if you feel you need an MPN specialist and are prepared to travel say up to 50 miles to Manchester I know you will find one.
Ultimately I think much depends where you're at with your ET because if it's stable you might find that Victoria Haematology adequately meets your needs in the short medium term until you can assess their level,of service.
Regards - Chris
Thanks Chris. I was diagnosed about 18 months ago, but apart from a bit of fatigue I don't have any other symptoms so I think I should be ok under regular haematology. Hope all's well with you, Ralph.
Ok well that's good news for you being in the early stages which could remain that way for many years!.
I googled Blackpool VH Haematology and opened the 'Meet the Team tab. There are a couple of familiar names at the top but The Unit now boasts a number of other specialists one of whom is linked with Myelofibrosis. It has grown in size since I attended so you should be well looked after.
Thanks for going to so much trouble, much appreciated . That's reassuring to know. I thought Blackpool Victoria would be the nearest centre. I'll take a look myself.
Take care.
Ok Thanks Ralph, , I was born and bred in Lytham St Anne's so if you have any questions regarding the general locality before or after your move just use the Chat option to get in touch and I will endeavour to help.
Will do, thanks again 👍
hi, I often drive to Lytham - it only takes us an hour along the M6. As you must be aware it is SO important to have an MPN specialist! I believe they are like gold dust !
I live in Crosby and travel to Clatterbridge Can er Centre in Oembrome place Liverpool city centre. I am under a Dr Naumen Butt and his wonderful team.
I am currently having bloods taken 6 weekly and generally as long as my stats are good I have a phone call to discuss next steps- but could always ask for a face to face appointment if I was concerned.
If you cannot find a specialist in the Fylde area - even though it’s a bit of a way for you - I would definitely travel to Liverpool. You just need to ask your GP for a referral!
Thank you so much for that useful piece of info. I'll keep a note for future reference. Very best wishes, Ralph.
Update on Pegasys for ET
Knock on effects from Et
Boosters for the immunocompromised.
ET JAK2 on Pegasys and Clopidogrel
newly diagnosed with ET and on anagrelide
