Finding a Cll specialist in South Wales, UK

[Bonnie-5]

Please could I have some names of Cll specialists that people would recommend

I have tried to email Chris Fegan but have not heard anything so I assume he is busy researching Cll, thanks for the help, Bonnie

[jackhammer]

Hi Bonnie,

I am under Prof Fegan. The Haematology department at UHW in my opinion is second to none. Have you asked your referring Doctor to e mail him?

Best regards,

Jack

[Bonnie-5 in reply to jackhammer]

Thank you Jack I will be seeing my haemotologist in September so I shall ask him and my GP hopefully I will be in good hands then thanks for the speedy reply Bonnie

[HAIRBEAR_UK Founder Admin]

Hi Bonnie, Prof Fegan may have only just returned from holiday so you may hear from him soon, if not as Jack has suggested a direct referral through from doctor may be the best way to proceed. There are a group of us from South wales with CLL meeting at Cardiff central library on 14th September many of us are under the UHW Haematology team and other South wales hospitals and can share our experiences with you.

Local support group for those in Cardiff and the South Wales area affected by a chronic blood cancer like CLL healthunlocked.com/cllsuppo...

Nick

[Bonnie-5 in reply to HAIRBEAR_UK]

Thanks Nick I will hopefully make this date it would be good to meet up with other people in the same boat. I feel positive that Chris Fegan is a good specialist to see. Thank you for the link. I hope to meet up with the other Cllers Bonnie

[Bonnie-5 in reply to Bonnie-5]

Hi Nick I tried to open the link it won't open what time is the meeting on 14th September Bonnie

[HAIRBEAR_UK Founder Admin in reply to Bonnie-5]

Hi Bonnie I have just refreshed and updated the information in a new post to the community here healthunlocked.com/cllsuppo...

Not sure why the l link is not working? You can find the information in latest posts on home page and should now be visisble in the news feed thread

PS i have also posted a patient conference in Cardiff on October 8th at which Prof Fegan will be attending and speaking

Nick

[Bonnie-5 in reply to HAIRBEAR_UK]

Thanks Nick that is much better looking forward to the meeting, Bonnie

[Bonnie-5 in reply to Bonnie-5]

Also Chris Fegan sent me an email and said that I need a referral from my GP. I feel better that Im following everyones good advice, thanks again Bonnie

[welshlady52]

Do you have to see a specialist? I live in South Wales and been on W and W for 7 years. Saw my consultant in June...he said my iron levels were a bit low,and seeing him in September. I take an iron tablet every day,due to my history of aneamia....i am wondering if i should get a referral to someone in UHW??

[AussieNeil Partner Administrator in reply to welshlady52]

In addition to Bonnie-5 's good advice, consider that there's around a 70% chance that sometime in the future you'll need treatment for your CLL. The best time to find a specialist you feel you can trust is when you aren't in urgent need of attention!

Neil

[welshlady52 in reply to AussieNeil]

I wasn't aware that I had to see a specialist...no one has ever mentioned it to me before at all. I thought I just kept seeing the haematologIst at the royal Glamorgan hospital

[AussieNeil Partner Administrator in reply to welshlady52]

Your current haematologist may see sufficient CLL patients for them to provide you with good care, but haematology is a wide field and you really access at least to a haematologist that specialises in blood cancers, in which case you'd probably gain better care than someone seeing a general oncologist, for example. CLL treatments are changing so fast that you really want to be seeing a specialist that is keeping up to date. The more patients seen with CLL and treated with the latest drugs, the greater the chance that if anything unusual happens to you, your specialist will have seen it before and will make what could be a life saving decision for you.

Neil

[jonathan7176 in reply to AussieNeil]

I don't know if any of the consultant haematologists I've seen at Warwick would describe themselves as "CLL specialists", or indeed as medical researchers (none carries the title of professor), but they have so far been equal to any question I've posed to them. I did ask when acalabrutinib would be coming in tablet form, and was advised to ask the pharmacist, which seems reasonable.

[HAIRBEAR_UK Founder Admin in reply to welshlady52]

Hi Welsh lady UK consultant haematologists should have a good working knowledge of CLL and if they do not have a special interest in CLL they will probably be consulting with colleagues who have as part of your MDT multidisciplinary care team. if you are stable and on watch and wait and doing well and you have a good relationship and confidence in your doctor and care team there may be no reason to seek a second opinion or gain a referral in an another health board at the moment,

You mention you have concerns about anaemia, I would press for more explaination about this from your haematologist or talk to the nurse specialist if you can and if you are not satisfied you can always ask for a referal from your GP to UHW for an appointenment with someone like Prof Fegan for reassurance if you are prepared to travel

Nick

[Bonnie-5]

Hi Welshlady 52, I am going to see a specialist in CLL because I think that they are more knowledgeable about our condition I think it wise to see them once or twice a year and make sure there is communication between my haemotologist and the specialist in CLL. The Cll specialist will know when and what to use when needing treatment, I hope that is helpful there has been a lot of blogs lately about the importance of this, best wishes Bonnie

[welshlady52 in reply to Bonnie-5]

Thank you Bonnie. So do you have to beat referred by your gp?

[Bonnie-5]

Yes I emailed Chris Fegan but he said you have to be referred by your GP, best wishes Bonnie