Consultant recommendations

[stevebran]

Hi I am looking for recommendations for a Consultant with CLL knowledge. I was diagnosed in 2017 while investigating repeated flu like illnesses and fatigue and have been with the same consultant since and I am on W&W. We have had a fundamental difference over my symptoms as they do not believe that fatigue is a symptom of untreated CLL. Fatigue was and still is my major symptom. I was also given a diagnosis of possible fibromyalgia (although I didn’t have the classic tender spots) and this has since been used to explain any symptoms that don’t fit either of my other conditions (I also have PMR diagnosed since 2021, lucky me).

Sorry this is turning into a bit of a rant but I feel I need a new Haematologist as our relationship is not helping me and they have already suggested that I find another consultant and I am having to chase them for annual reviews and then results of blood tests (over 5 weeks waiting after the bloods before I rang them and they still haven’t looked at them)

So if anyone can recommend a Consultant somewhere in the South of England or has any other advice I would be very grateful.

[Jm954 Administrator]

If you're near Southampton, perhaps consider there as they have 15 world class haematology consultants and are very research active, keeping themselves up to date.

[stevebran in reply to Jm954]

Thanks very much for that, as it happens I was at Soton today with my father in law and have only just got home so apologies for my late response. I shall look at their website tomorrow and see how to proceed. Thanks again for the work you do for our community.

[mrsjsmith in reply to stevebran]

As far as I know you need to ask your GP to refer you to a new hospital. I changed because my consultant left, and it was early in my diagnosis and he wasn’t a CLL specialist so it was easy.

Colette

[stevebran in reply to mrsjsmith]

Thanks Colette It will be great if it’s that easy

[mrsjsmith in reply to stevebran]

Hopefully it should be straightforward explaining the problems to your GP and asking for a referral to another hospital, but sadly there isn’t a magic bullet for fatigue, mine was horrendous until I started my first line treatment.

Good luck

[stevebran in reply to mrsjsmith]

Thanks very much and it’s good to hear your fatigue has improved. My fatigue has been with me since before diagnosis and is my most debilitating symptom. Together with the reality of COVID it’s really limited my ability to do anything which in turn is certainly affecting my mental health. I shall check out your profile as I would love to compare your experience with fatigue, particularly your consultant’s views and any tips that you found helpful.

Take care

[mrsjsmith in reply to stevebran]

Fatigue and a neck that made me look like a hamster 🐹 was the start of my illness. I first noticed when I got off a bus a stop early and I looked up the road and realised I was too tired to walk to the next stop. Took ages for correct diagnosis and then straight into treatment, back in 2007 it was Chlorambucil.

Sadly it’s not understood. The only way I could describe it was I felt my veins were empty and I was just a body moving around slowly, I felt completely drained. I could fall asleep over dinner. I think the main reason it’s ignored is because there is little to be done, as I understand.

Colette

[Milla15]

I'm very happy with the team at the Churchill hospital in Oxford, under Prof Anna Shuh.

[stevebran in reply to Milla15]

Thanks Milla it’s good to hear you’ve found somewhere you can have confidence in. Luckily I am still on W&W so my contact is very infrequent and both my appointments have been by phone since the pandemic. I am close to Southampton so I’ll see if that’s on.

[Kwenda]

As noted above Southampton is well recognised as above average and has a research team.

Also there are several excellent consultants at Bournemouth and Poole hospitals.

Just Google the hospitals and they have web pages on their list of consultants.

[stevebran in reply to Kwenda]

Thanks I’m close to both. I shall get busy on Google!

[Michaeljohn50]

I have received excellent care at Bournemouth, not the closest hospital but an outstanding team. My consultant guided me through V&O during the pandemic and achieved Umrd, it was not straightforward. She has been brilliant. I am not sure about the protocol of naming her online but would happily provide her name privately. I attended a CLL Support meeting in Bournemouth prior to treatment to guide my consultant selection, I was fortunate enough for Bupa to pay for my treatment. I was very impressed by the Consultants and nursing staff who spoke at the meeting and who made themselves available for the entire day.

I met two CLL Support members at the conference who had the unfortunate experience of being treated by the same consultant that I was desperate leave (somewhere in the West Country). They transferred their care to Bournemouth on the NHS. Both were very happy with the outcomes resulting from their decisions.

All the best,

Michael

[stevebran in reply to Michaeljohn50]

Thanks Michael that’s really good to hear especially the Umrd. Your experience at Bournemouth sounds highly commendable. I know there are some really good people there and they have a very good reputation.

Cheers

Steve

[blowinginthewind]

If you are in travelling distance of The Christie in Greater Manchester I would definitely recommend it. Adrian Bloor is a CLL specialists, the staff are lovely, the hospital is a specific cancer centre. I was originally sent to my local hospital, and was not happy, so I asked for a second opinion from the Christie, saw Professor Bloor and he added me to his list.

I hope you find the right doctor for you and the right hospital.

Liz P

[stevebran in reply to blowinginthewind]

Thanks Liz, so glad you’re happy at The Christie. I’m at the other end of the country but I’d certainly like to go back, I had a house in Didsbury in the 80s and I haven’t been back since. I should consider getting a second opinion first perhaps?

[Nucleusman]

I am under Dr Aristos Chaidos at Hammersmith. The very best. But it all depends if you are BHS or private and your location

[stevebran in reply to Nucleusman]

Thanks and glad you’ve found the best. I shall look him up. Cheers

[Walkingtall62]

Hi, I am not qualified, but wondering if you have ever had your thyroid tested. Not something my CLL a people do, but my GP does. Take care

[stevebran in reply to Walkingtall62]

Thanks that’s a good point. I seem to remember having it investigated in the past but not recently. Thanks

[UKfulloflife]

Dr Toby Eyre, at The Churchill hospitalin Oxford. He - and his whole team - are amazing. I've been under the Churchill for 11 years and simply couldn't have wished for better care. Highly recommended.

[stevebran in reply to UKfulloflife]

Thanks I shall certainly have a look. It’s really reassuring to hear from so many that are receiving excellent care. Even in these really difficult times for the NHS. Cheers

[stevebran]

Thanks very much for your understanding. In fact I think you have probably hit the nail on the head! So nice to be understood. 🙂

[blowinginthewind]

Didsbury is a nice area - very "up and coming". And East Didsbury has a nice large park and ride tram stop, which is great on the very rare occasions on which I venture into Manchester city centre. I don't know what The Marsden is like for CLL. But others on here will know. I hope you find the right consultant.

Liz

[stevebran in reply to blowinginthewind]

Thanks Liz, I’m feeling more optimistic just from all the generous responses I’ve had.

[blowinginthewind]

Diagnosis is very scary - but this list, and the one on Facebook help a lot. Leukaemia care also do support groups - both face to face and online.

[stevebran]

Thanks for the reminder, I must admit I do not use these online services very much. I learn about them then tend to forget about them. I find it difficult online and as you know in person meetings have their own difficulties for us immune compromised people.

Cheers Steve