CLL specialist in SE England

[luckyackerl]

Anyone know of C.L.L. specialist in South East England please? Returning to Sussex soon and not sure if Haematologist at Eastbourne District Hosp is one. Many thanks

[Cllcanada Top Poster CURE Hero]

Might try Bournemouth, the late Dr. Hamblin's hospital... it has a depth of CLL experience, both clinically and in research.

I know it's a drive, but useful prior to treatment for second opinion.

~chris

[luckyackerl in reply to Cllcanada]

Thanks very much, good to know. So essential to be properly informed..

[HAIRBEAR_UK Founder Admin]

A good person to ask for a recommendation will be your current consultant if he/she has a special interest in CLL they may know people in the Sussex area , there are consultants with a special interest in CLl across Kent and Sussex i'm sure others here in the community will be able to share their own local knowledge soon.

Nick .

[luckyackerl]

Thank you, was a bit overly concerned not to offend current guy.....his resume says he has special interest in blood disorders...what exactly makes a C.L.L. specialist? Any particular qualifications? Need a C.L.L. specialist spotters handbook!

[Newdawn Administrator in reply to luckyackerl]

I understand exactly what you mean luckyyacker. When I told my Consultant I'd be asking for a CLL specialist opinion when I need treatment he asked why. Always tricky. However there are renowned specialists and a good Consultant should have the humility to recognise that. I did actually point him to the research that said patients in the care of CLL specialists had a longer overall survival rate of about 2 years and I was going with that!

It would be very worrying however if you had a haematologist whose resume didn't say he had a special interest in blood disorders. Bit like a motor mechanic saying he has a special interest in cars!

Good luck in finding someone (and the handbook would be very useful!).

Newdawn

[luckyackerl]

Thanks Newdawn, you have given me courage! Off to stiffen the sinews and summon up the blood before next appt.....

[bmredsea]

I live in Sussex and travel to see Dr Clare Dearden at the Royal Marsden in Sutton, Surrey.

She's a specialist in CLL. Recommend without hesitation.

Brian

[luckyackerl in reply to bmredsea]

Thank you so much, good to know. Was it difficult to get a referral if you don`t mind my asking?

[bmredsea in reply to luckyackerl]

My doctor wrote a letter and within 6 weeks I had a 45 minute consultation with her, all on Nat Health. V. impressed. I previously saw Dr Gale at Pembury but decided I wanted to see a specialist in CLL. Good luck.

[luckyackerl in reply to bmredsea]

Thanks so much, that`s exactly what I want to do.

Cheers, Joyce

[rspencer75]

If it helps I see Dr Gale at Tunbridge Wells. I can only assume he is a specialist.

[luckyackerl]

Thanks, will check him out. Currently see Dr. Richard Grace at E.D.G.H. but not sure if he is a specialist, or how one would find out!

[Redlion in reply to luckyackerl]

Hi Luckyackerl, I realise this is a rather old post but as someone who is in the same place you were 2 years ago and living in the Eastbourne area I was wondering how you got on with a referral and who you ended up seeing. I have been seeing a Dr Wesson Smith at Conquest DGH for the last 8 years but when I went for an appointment yesterday I was told he had retired, I saw a "specialty doctor" who had taken over his lists for the time being. When I enquired I was told that they did not know when or if the Consultant would be replaced. Given that I have an ongoing chronic osteomyalitis (bone infection) condition deciding on treatment options is somewhat more complicated than normal, so i am more than a little apprehensive about putting my trust in the current staffing arrangements. Could be I will be offered BR as FCR is out due to the osteomyalitis, although in my last conversation with Dr Wesson Smith he indicated that due to my particular circumstances he could and would argue a case for Ibrutinib. Now that he has gone I feel that I have lost my advocate for the desired treatment option.

I hope that you are recovering from your chest infection problems. Best regards.

[luckyackerl in reply to Redlion]

Hi, I have been seeing Dr. Grace at Eastbourne. He is very good, Had BR which was pretty effective but left immune system bit useless hence chest infections. I will be having Ibrutinib when I relapse, was not offered as first line treatment.

I would recommend you go for Dr Grace, he is very conscientious. Good luck!

All the best

Joyce

[Redlion in reply to luckyackerl]

Hi Joyce, Thanks for the info and recommend.

[Dell49]

Hi

I am under Epsom and StHelier trust in surrey and my consultant is Dr Roslyn Zuha and treatment has been fantastic, they also have a great working relationship with the Marsden in Surrey , bit of a drive but if possible would recommend highly.

Dell