UK CLL Forum, UKCLLFORUM

CLL Specialist / Hospital in UK

Topic Made On: Aug 16, 2009 12:04pm
gagweston

Offline
Gender: Male
Posts: 1
Hi,

Due to various concerns regarding our medical cover in Spain, we are considering returning to the UK. We want to ensure we re-locate near a CLL specialist and to that end would like to ask for your views - good and bad - regarding the various specialists and hospitals. Also, how far is it feasible to travel - particularly during treatment- as our Spanish consultant has offered to refer us to the Royal Marsden but do we have to live near London?

We have referred to the list of specialists on the Support Ass. website as a first step.

Thank you for your help,
Gordon




Replied On: Aug 17, 2009 09:08am
Robert Cork

Offline
Gender: Male
Posts: 160
Gordon

If I was looking to move now, I would be thinking about living close to the medical centre's where these professionals practice.

Professor Andrew Pettitt
Professor Peter Hillmen
Dr Claire Dearden

Having just completed 6 rounds of RFC the daily/weekly trek to the hospital did start to take it's toll. The worst part, was trying to find somewhere to park and having to be at the hospital for 8.00am. So I am inclined to say no longer than 30mins to an hour away from the hospital.

Regards

Robert



Replied On: Aug 17, 2009 12:02pm
adef

Offline
Gender: Male
Posts: 33
Welcome back Gordon.

Couple of things to bear in mind:

1)consultants in district hospitals have often trained with 'superspecialists'at teaching centres and continue to be networked into best care.I have experience of the Leicester network which includes Peterborough based around Prof Dyer and Dr Ben Kennedy and the Cambridge network which includes Norwich led by Dr Follows who trained with Hillmen in Leeds.Once in a network linked to a specialist centre then you can ask to be referred in if apppropriate.

2)your choice of GP is probably just as important.I am fortunate to have found a GP who has links to the oncology dept. so has up to date understanding of how important infection and lowered immunity are.Some GPs have special interests in haematology or oncology and work in hospitals some of the time.Your PCT will know if there are such GPs near you.

Do let us know how you get on.

Best regards,

Adrian.



Replied On: Aug 17, 2009 12:11pm
Swainson

Offline
Gender: Male
Posts: 20
Gordon,

I suspect the real question is where in the UK are you thinking of moving to?

Like Robert I would suggest living somewhere near the hospital as the treatment can involve many visits to the hospital. Not counting the inpatient periods I made in excess of 30 visits to outpatients during my 6 months of treatment.

I live in Cheshire and was lucky enough to be referred to The Christie Manchester (a 60 mile round trip); Iím under Adrian Bloor who is the haematologist who specialises in CLL there.

Christieís is famous for cancer treatment and their Haematology and Transplant unit would I suspect (not that I have any factual knowledge) stand up with the best in the world.

But after the treatment Iíve received Iím kind of bound to say that arenít I . . . . .

Good luck

Jim.



Replied On: Aug 17, 2009 03:00pm
Zeno

Offline
Gender: Male
Posts: 37
We can all recount our experiences with the departments that we have been getting treatment in. The most important thing is how we are responding and are we getting the most efficient treatment available without the PCT funding having its say!

For me, I have been treated in the UCLH Haematology which, as I understand it, is at the centre of international standing for the research work undertaken not only in the hospital but also the university. Professor David Linch, who also happens to be the president of the Lymphoma Association, leads a formidable group of haematology consultants and researchers. I am a patient of one of the researchers and cannot fault the treatment that I have had. I am aware, though, that there are other fine centres.

In terms of where you live, I live some 50 miles from London and am able to be registered at the UCLH. I have completed an FCR treatment in January 09 which was successful.

Best wishes with your choice



Replied On: Aug 19, 2009 04:40pm
Gillian

Offline
Gender: Female
Posts: 22
If you fancy living in the Midlands I can recommend Nottingham City Hospital with Dr Andy Haynes and his team. Dr Haynes is a CLL Expert on the CLLSA list. I haven't needed treatment yet but have found him extremely knowledgable (I believe he's also a senior lecturer at Leukaemia Research etc) as well as being very approachable. He's always willing to spend time and answer questions and is, if you know what I mean, 'sensible'- he doesn't make a drama out of a crisis. Good luck with your decision. Gillian



Replied On: Jul 20, 2011 03:12pm
Nick

Offline
Gender: Male
Posts: 104
Not being a frequent flyer before ny stroke and CLL diagnosis, my only encounter with NHS medics, was purely social or to be stitched back together on a few occasions. It's still a very puzzling enviroment.

I've been pondering the difficulties we seem to have when needing to see a Doctor. For me, to get to the GP quickly requires joining the telephone bun fight at 8.30 prompt, stuck in a cue to then find all places for the day have been allocated, leaving ER as an unsuitable option or join the cue next day. Even on medication issues, if you register for the next available appointment that can be at least two weeks away with your GP, so you have to see another practice member perhaps in several days who you do not have a satisfactory relationship with.

Getting a referral to a haematologist and subsequently to a CLL consultant was easy for me, perhaps due to my location. However I know many seem to be given many different solutions that may or may not work for them. I was wondering what others have to do, does this vary according to location. What are others advice for CLL patients.

Self help at:http://www.cllsupport.org.uk/selfhelp.htm
Reporting symptoms,Seeing your Doctors, what can I ask the NHS for have answered much.

Does any one have any links to further information?
Someone suggested getting a letter from the GP, outlining CLL special needs. To prevent the unnecessary. Has any one any advice? What are the rules?



Replied On: Jul 21, 2011 10:26am
pastongriffin

Offline
Gender: Female
Posts: 10
I have learnt to always carry most recent blood tests and letters with me (always ask for a copy of any paperwork) as I am seen at 4 hospitals over 2 counties. The Drs are usually grateful and it prevents unneccessary test. But before I learnt I wasn't very insistent about seeing my GP and problems escalated. So now I will go in and see the nurse or a receptionist if in dire need....and needing antibiotics is urgent if you have CLL. It is a nightmare for CLL patients in the UK because no one doctor - apart from the GP is supposed to deal with everything to do with you - and, as you say, it is very hard to see the same GP twice! All I can say is..be well informed to danger signs yourself and then be persistent...polite but persistent. Its a rare disease and behaves different in different people. Do you have a specialist nurse to ring? Every cancer patient in the UK should have one..if not then ask who yours should be and ring them when in doubt. They will get through to your GP if they are worried and think you should be seen earlier.



Replied On: Oct 05, 2011 01:40pm
Bern

Offline
Gender: Male
Posts: 9
I live in Merseyside and was diagnosed with CLL 6 years ago.I am attending the local hospital for routine blood tests. I have Trisomy 12,low CD38. My other counts are WBC 130,RBC 3.45, platelets 117, Haemoglobin 10.5.I have several lymph node swellings.I am nearing treatment and was considering a second opinion from a CLL specialist.Has anyone consulted Professor Andrew Pettit?



Replied On: Oct 06, 2011 09:57am
Chonette

Offline
Gender: Female
Posts: 24
I have heard excellent feed back from Professor Andrew Pettit from several CLL friends.

I live in Wiltshire and although there is no a consultant with interest in CLL, the hematology team work with others from other centers, also Oxford has a consultant with interest in CLL.

There are several places in the country with good teams, I think it is important to know where you would like to live as well to enjoy your personal life.

3 years ago I had a very intensive treatment (Campath/HDMP) spending a whole week on the day treatment from 9 to 6 or 7 every month so I booked a B&B next to the hospital for £30.00 a day and spent the week there, it was better than going home everyday.



Replied On: Oct 06, 2011 01:04pm
Nick

Offline
Gender: Male
Posts: 104
Hi Bern and Chonette,

Living in Merseyside , not sure how close The Royal Liverpool hospital is from you, but assume it must be pretty local. Proffessor Pettit and his team are at the face of CLL medicine and discovery and very highly respected. When considering treatment I think it a good idea to have the overview of someone with very specific and current CLL knowledge, as Chonette mentions often hospital haematologists work closely with haematologists with a special interest in CLL from other locations.

We are entitled to a second opinion, your GP has to make the referal on your behalf, I guess it does also depend on your relationship with your current haematologist and your own preferance. I know if I had one on my door step (which I do), I would like an opinion. it is a very important step in your life to start treatment. The confidance you have in your doctor is a very important part of this decission.

Take care

Nick

Pastor griffin,

Thank you for your words and advice. Unfortunately in my part of Wales and many under the devolved NHS,we are not allocated a specialist nurse, (well I haven't). Our point of continuity is our primary carer (the haematologist, in my case with a special interest in CLL), however as we get to see them so infrequently, if I have somthing that is of concern then I will contact his secretary. However I would feel a bit daft doing this when it is the GP who should be easily obtainable, to help with the niggles and bumps in the road we experiance and need help with. Not a satisfactory place for us to be.




Replied On: Oct 06, 2011 02:13pm
Nick

Offline
Gender: Male
Posts: 104
This is not a rant just a thought, the Primeminister is making a whole lot of noise about putting the Great back in Britain. When it would appear A great ammount has been taken from the nation. For a National Health Service has become an English health system a Welsh health system a Scottish health system and Irish health system. Is it now a national service? We see the reorganisation of the English with a more GP lead service and different provisions being rolled out for supporting cancer patients . We see the Welsh health service implementing cuts in real terms (with talk of loss of the special drugs fund} and each regional health providor offers a different service. Why is it still called the National Health System?

Don't get me wrong, I am so grateful for what we have and would not like to be without it, just confused I guess? For all the advice that seems to come over the air is in one form, it seems this should be tailored to suit regions and countries within Great Britain.



Replied On: Oct 06, 2011 03:44pm
Bern

Offline
Gender: Male
Posts: 9
Many thanks Chonette and Nick.I am awaiting a reply from my GP regarding a second opinion from Professor Andrew Pettit. Over the six years since diagnosis I have been seeing the Consultant Haematologist or Senior Nurse Specialist locally. Would a Haemoglobin of 10.5 be sufficient to warrant treatment( WBC is 130)? Any thoughts on a "milder"treatment of Chlorambucil and Rituxan.



Replied On: Oct 06, 2011 08:43pm
Nick

Offline
Gender: Male
Posts: 104
Hi Bern,

It is unclear from your post if your current consultant has suggested treatment or not?. Of course their recomendation is nased upon much more than your counts, there is much more they will consider. I am afraid none here can give you an answer to this it is for your consultant or a second opinion should you gain a referal. The same goes for your second question.

can you give us any more information and what you have been advised?

Take care

Nick





Replied On: Oct 06, 2011 10:13pm
Bern

Offline
Gender: Male
Posts: 9
"Treatment is getting closer" was the conclusion at the last visit.I revisit in two months and was told it depends on these results(and maybe a Bone Marrow check).I have small lymph node swellings on each side of the neck but no other symptoms. The comment was made that with the Haemoglobin trending down it could signal treament if it reaches 10.0.
(Professor Terry Hamblin has this figure as a condition for treatment)
Bern



Replied On: Oct 07, 2011 10:38am
pastongriffin

Offline
Gender: Female
Posts: 10
Dear Bern, If you look on the American or Canadian sites you will find a link to a new research paper saying that CLL patients get an average two more years of life if they consult a CLL specialist before treatment and remain under their care! That is amazing and also a little worrying. It was published last month and Dr Hamblin wrote about it on his blog, 'Mutations of Mortality'. There is a list of CLL specialists on the UK CLL support site . I Have to travel about two and a half hours to get to Addenbrookes where my nearest one is (Cambridge) but I reckon its worth it. I got on the UK trial of chlorambucil and rituximab as a result and I know they are researching many other treatments so, when the time comes, I'll be on another trial...Good hunting!



Replied On: Oct 07, 2011 01:03pm
Nick

Offline
Gender: Male
Posts: 104
Hi Bern, given that answer I think it wise to consider your options, Good luck with your referal request. It is fair to assume your current haematologist is showing concern as time between monitoring visit's should reflect how settled your disease is. A BMB is a straight forward procedure and will tell him/her the true state of play. Other conditions have to be ruled out to allow correct treatment and all indicators and markers have to be taken into consideration. good luck with your counts in two month, I think you already had the answer as to when some action may be required. A second opinion may help in your knowing that the right one for you is taken at the right time.

Good luck

Hi PastonGriffin,

Many have reported on this Mayo paper, some have called it self serving others such as Cheya at CLL topics, have suggested that non CLL specialists may be treating to soon. What is clear from all the reports is that many statistics were not included. I think even proffessor hamblin comments at the end of his article:

"So I find the paper believable. It is not necessary to be treated by an expert - their fellows do even better than they do, but make use of an experts expertise."

I think it fair to suggest that if you have the oppertunity of some one at the CLL "face" with current CLL knowledge and expertise giving oversite to your needs first hand. Then you should make that so.

Knowledge and influence in accessing trials must be a part of the concideration. I was fotunate to be able to attend a Southampton talk by Dr Duncombe, an expert in CLL drug trials, a brief synopsis:

"There were just over 50 people at the meeting on 15th July . Dr Duncombe is an expert in CLL drug trials. Drug trials build on the best treatment available for a specific type of patient,and the standard of care given to the patient is extremely good. Often, drug trials will allow the doctors to give drugs that are known too be effective that are not available on the
NHS. If you are coming up to treatment and want to consider a trial, read the attached CLL Trials Newsletter."

http://www.cllsupport.org.uk/news_archive_pdfs/CLLSA%20Newsletter%20August%202011.pdf

Take care

Nick



Replied On: Oct 08, 2011 12:29pm
Nick

Offline
Gender: Male
Posts: 104
Hi ALL,

There is a new pod-cast available with medical journalist Andrew Schorr and Dr. Michael Keating (head of the CLL World Research Foundation) of MD Anderson. The pod-cast is on the Patient Power website.

Dr Keating gives an interesting and optimistic overview of treatments and research. At the end of this there is a very brief discussion on the topic of expert CLL medics and the above mayo paper. Some of this recording is a little scientific but most is easy to follow. it gives a brief synopsis of new research state of play and what may come over the hill. Understand that some of the agents under developement involved in trials he mentions are not being trialed here yet.

Patient Power: http://www.patientpower.info/program/an-experts-perspective-the-changing-landscape-of-cll

UK CLL trials: http://www.cllsupport.org.uk/clinical_trials.htm




You must be logged in to post a comment. Login Here