Leeds teaching hospitals

[Ramy22]

Hello

Anyone happy to share their experience of haematologists here? Have you any good tips?

[Maggie-ol]

I have been treated at Bexley Wing, Haematology at St James, Leeds since diagnosis a year ago and I have been well looked after. There was a support nurse in the room with us when I received my diagnosis who is available to ring with any questions or worries I have, and I was given a lot of booklets and info to take away with me. I am under Prof Bowen but we seem to be allocated to any of the Professors or registrars who are in Clinic on the day.

I have realised that its better to take a list of questions with me to clinic and on my last visit I was given a book to record my symptoms.

My only concern, which I voiced at my last appointment is that Hydroxy seems to be given as first line treatment. From what I read I question this as I feel its just the cheaper option and better, long term benefits seem to be possible with other drugs available. I was told that Hydroxy was the best for me!

Since finding this forum, I check daily and find a lot of the questions I have regarding commom symptoms etc are usually answered by someone on here. So for general reassurance that I am a "normal" PV patient, this Forum and its members are invaluable

Regards

Margaret

[Ramy22 in reply to Maggie-ol]

Hi Margaret

Thank you. I’m glad you’re experience of St James’s is so positive. When I transferred there 7 years ago from London teaching hospitals my experience was initially terrible although there is a fabulous heamatologist there who I see all the time who, unfortunately, won’t be there for a few months. I just wondered what others thought really to try and reassure myself. Maybe I was spoilt by the years I spent being treated in London! I have been taking hydroxy for about 12 years, have never had any side effects and am very well. I hope this is reassuring. Thank you.

Mary

[Maggie-ol in reply to Ramy22]

Hi Mary, as St James is my only experience of PV treatment, so I have nothing to compare it with. Also its taken me this whole year since diagnosis to a) get over the shock of having the diagnosis in the first place, b) relief at the easing of symptoms, and finally finding my voice to question the medication. Although have to say thst from reading posts on here it seems as though Guy's Hospital is the best place to go! I am grateful that I feel so much better than I did this time last year, and just getting on with my life! Best wishes to you for a healthy 2018

Margaret

[Ramy22 in reply to Maggie-ol]

I’m glad that you feel better now. I have ET so my experience is different..... all, I’m sure, will be well. Good luck.

Mary

[Hidden in reply to Maggie-ol]

Hi Maggie lm also in Leeds area and registered with the St James team, Head of hematology is spot on and the proffesors l get to speak too are also knowledgable and empathic. The verdicts out about the nurse support ,who seems to me always rushed and rather condescending lm afraid this does not inspire trust in me and trust in one's clinical support is vital for me. 😂

[Maggie-ol in reply to Hidden]

Hi Adiewon2

I am now on annual visits to Haemotology, although did wait over 15 months between appointments last time, I'm guessing Covid was to blame for the delay.

Telephone updates are, I agree quite hurried but, just now I'd rather not be visiting the hospital

Apart from on occasional "blip" my symptoms seem to be under control-I hope your's are too - stay safe and well

[Hidden in reply to Maggie-ol]

Hi Maggie

Happy to hear all well with you .

Stay safe.

adiewon.