Query: Hi all, some advice please. Can we ask to... - CLL Support

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Query

Vindicatrix
Vindicatrix

Hi all, some advice please. Can we ask to see a CLL specialist as opposed to a general Haematologist. I am also led to believe sometimes we are seen by a Registrar and not a qualified specialist, can someone enighten me. Thanks Ron

41 Replies
oldestnewest

Good question.... UK?

Here is my view to be occasionally seen by the registrar working closely with the consultant who is the tope CLL expert is fine, and better than seeing a local Haem who might not have as much expert knowledge as the real experts. Registras are one way from consultant and still have to get their hands dirty saving lives in the evening. They have passed their exams but they defer in their private meetings after consultations to the expert, and if you have a major decisions they would usually ensure you met the top specialist on that occasion.

Newdawn
NewdawnAdministrator
in reply to AdrianUK

I don’t agree that ‘local haematologists know nothing’ Adrian. Most are Consultants and a lot of them run Flair trials for their own unit.

Newdawn

JigFettler
JigFettlerVolunteer
in reply to AdrianUK

Adrian I have to take issue with your comments above... "...a local Haem who knows nothing..."

It is my experience that this is not the case.

Such generalisations are not helpful.

Jig

AdrianUK
AdrianUK
in reply to JigFettler

You and Newdawn were both absolutely correct. I have edited it to hopefully better reflect what the case is. I also believe that "local" haematologists can often actually be mini experts especially the ones who have been forward looking enough to connect to the FLAIR trial. In medicine there is always a balance to be had between geographical convenience and concentrating the expertise in a few top places. Some conditions are so rare that it makes sense for only one centre in the whole country to see the patents with it. I was careless in my communication when I wrote that so thank you for picking me up on it!

devonrr
devonrr
in reply to AdrianUK

Adrian. You have constantly sought perfection. That is your right but for most the service provided is often exceptional without the “top consultant”.

I fear that you have not in 3 years learned to accept living with this disease and are still in the psychological trauma we all go through when first diagnosed.

In the words of the young “chill”.

Accept your life with knowledge and care.

Peggy4
Peggy4
in reply to AdrianUK

I have to say AdrianUK that had I read your replies to this post when first diagnosed it would have been the final straw. After watching the amazing Prof Fegan online I knew that he was the man I wanted to see. HOWEVER until then my lovely LOCAL haematologist had given wonderful care and I actually DO live in a remote part of Wales!

Newdawn
NewdawnAdministrator

The Consultant Haematologist (either in a local or regional hospital) leads the haematology team and like all haematologists will have an excellent all round knowledge of blood disorders and blood cancers. Some specialise in CLL and go on to publish, speak and research specifically on CLL.

In the NHS you may occasionally see lower grades but some will be ‘associate specialists’. This is a senior middle-grade doctor working in the UK, who has trained and gained experience in a medical or surgical specialty but has not gone on to become a consultant. These doctors usually work independently but are attached to a clinical team led by a consultant in their specialty. My associate specialist was in all honesty more informed about CLL than the Consultant.

These teams tend to work in a multi-disciplinary way and often share patient issues and needs with colleagues across other hospitals.

I’ve had consultations with excellent registrars & snr registrars and there are times when the monitoring is more routine that this is absolutely fine. I’d suggest asking to see a leading CLL specialist when treatment is nearing. Your own Consultant or GP can refer you.

Newdawn

AdrianUK
AdrianUK
in reply to Newdawn

As often the case you expressed what I was actually intended to say much better than me. For sure it is often the case due to geography that during watch and wait to be monitored by a local team can be very helpful.

I am treated by the largest blood cancer centre in Europe (UCLH) but when it came to making a decision for treatment I was keen to get a second opinion to help me weigh up my options. It is a nuanced and complicated decision to take the plunge for treatment and to get advice from more than one source is probably smart. Brian Koffman made the general point about the benefits of experts well in the interview we filmed last night. I hope that you and others will forgive me for my careless statement last night it was probably influenced by my ruminations on hitting the 3 year mark.

I am almost certain it was you personally ND that saved my life 3 years ago by encouraging me to seek our a specialist and I am very grateful to you for doing so. Another point I should also make is that some local haematologists are insightful of their own strengths and natural limitations and so make really strong connections with the top experts, effectively becoming part of their teams. It takes real humility to do that but it is in the patients best interests.

There are for example Multi disciplinary team meetings that involve a consultant from miles away virtually to help a local team make the right decision. I think we will begin to see more of this now the NHS has fully embraced video consultations.

I can imagine a time where a patient in a remote part of Wales might even be sitting in a GP surgery and have a joint consultation with the consultant. Perhaps for example with the GP leaving the top expert and patient alone together then jumping back on the call at the end having seen other regular patients in the meantime.

One way to identify if your doctor is the kind of connected and advice taking person you want managing your is to just ask them "I was thinking Doc, when the time comes to having treatment, no disrespect to you but I would probably like to get another opinion and maybe even consider a trial, what do you think?" If your doctor immediately embraces that and perhaps describes how they are strongly linked with one of the top names, and even says yes trials can be really great, well then you know you are in safe hands. If they say something like "I know best and you don't ever need to see anyone else" then personally I would just say thank you very much, and leave the session without making a scene, and book an appointment to see your GP and ask for a second opinion appointment right away.

So local can be fine, especially during watch and wait, and especially if they are well connected and humble.

I do however think it is vital to have access to 24/7 nurse led helplines for all CLL patients not just during treatment. I often wonder how many others are able to have such a service, and to also have access to dedicated beds if at any point you do need an admission. Personally I will never again go to my closest A and E department not because they did anything wrong in the initial assessment but because it was clear they were out of their depth managing my infection given that I was immune compromised.

Jm954
Jm954Administrator
in reply to AdrianUK

Adrian, you are worrying people here and you have already agreed that Newdawn had expressed what you were trying to say. It is perfectly acceptable to see an Associate Specialist or Registrar because when decisions need to be made it is done by the whole haematology team.

You are indeed fortunate to live near or in London and have access to "the largest blood cancer centre in Europe (UCLH)" but when you are phrasing your alarmist replies please remember that not everyone is.

To say such things as " it is vital to have access to 24/7 nurse led helplines for all CLL patients not just during treatment. I often wonder how many others are able to have such a service, and to also have access to dedicated beds if at any point you do need an admission" is not entirely realistic despite plenty of local centres having an excellent haematology service.

When I was admitted with hypertension, the last place I wanted to be was a haematology ward - it was not their speciality. I needed a cardiovascular Dr and that's what I got with a side room and great care.

Excellent care and expertise is available at local level, please remember that.

Jackie

DriedSeaweed
DriedSeaweed
in reply to Jm954

I find in the USA the local hem/onc can respond in minutes to me. With the big research centers I go to there are hurdles and long waits for responses sometimes. Might not apply to UK but something for US residents to consider.

mrsjsmith
mrsjsmith
in reply to AdrianUK

Adrian if you unfortunately have to call for an ambulance do you honestly think they are going to ask you which hospital you fancy going to ? The NHS is not ‘ pick and mix ‘

Also I am a patient at a large London hospital and I don’t have access for a specialist nurse 24/7 ! If I had a problem out of hours I would have to ask for oncall Haematology.

Colette

AdrianUK
AdrianUK
in reply to mrsjsmith

You are allowed to present at any reasonable NHS hospital. And you are allowed to ask to be referred to any relevant doctor initially or as a second opinion. So when I am sick enough to need hospital but not so sick to call an ambulance I just take myself to UCLH which I know is not possible for everyone. In general I would never call an ambulance anyway unless I felt like I was about to arrest or stop breathing. When I collapsed with severe pneumonia underground we were waiting for more than an hour for the ambulance because I was still breathing. If I was well enough to get out of the station (had to be carried up) I could have jumped into a taxi much more easily.

There is obviously a balance between geography and specialism. Perhaps when you read my experiences you will forgive me for having over stated things the other night since I was kind of reliving my experiences of three years ago mentally. Sometimes it is almost like a medical PTSD that some of us experience and it for sure biases me in favour of expert centres as I am certain UCLH saved my life when I finally got referred there.

I am sure that many people have a great experience at a local hospital (my dad one one) and that responsible local hospital doctors know exactly what they can handle and what they need to ask for help from the top experts for. It is just unfortunate that a few do not seem to have that attitude.

In my dads case he had his first line blood cancer treatment (he had DLBL) at the local and it was absolutely fine then they then asked him to go to Barts for the 2nd (he was offered the choice and we all agreed that it might be best for he and I to be at different hospitals since they probably couldn't have coped with two Warnocks!

In the case of some of the much rarer blood cancers people are actively asked by the NHS to go to one specialist centre for the whole country no matter where they live, and the hospital transport at UCLH and I am sure Barts and other top places pick up those with poor mobility or other health issues from as far afield as Cornwall at times.

I don't think we will ever fully agree on this one because of course there are conflicting requirements of convenience vs getting access to clinical trials and other things the really local hospital just can't do.

Everyone has to weigh things up for themselves and work out what they feel comfortable with. If you do find yourself needing to be assessed in a local A and E at some point for a possible infectious situation it is definitely worth making sure that the doctors and nurses know that you are "Severly immune compromised" and to use the modern lingo "extremely clinically vulnerable" and so they should carefully check you for signs of sepsis or hidden infection if you present with a fever over 38C and ideally get you isolated from other sources of infection as soon as possible.

Those under the care of a specialist hospital who do have access to one of these nurse led helplines can ring it from wherever they are in the country and the nurse will often then be able to call ahead to the local A and E to make sure they know what to do. There is a clear protocol for such an assessment which most A and Es should be able to do as long as they recognised that is what they need to do.

This doesnt mean of course that you HAVE sepsis and often the outcome of the tests will be reassurance and being sent home with antibiotics if relevant. Note that most experts agree we should be treated earlier, more aggressively and for longer with antibiotics given our condition from the moment we are diagnosed. UCLH standard treatment for possible sepsis seems to be tazocin and sometimes an additional antibiotic IV whilst you are waiting fror the results.

I turned up there once with a fever in the middle of chemo. Have never moved thru a hospital quicker. The venflon was in within 2 mins of me walking thru the door and the bloods went off, shortly after the taxocin started but a little later we confirmed I was NOT neutropenic, and in fact tested positive for flu on a rapid swab. So I got sent home with tamiflu which whilst it may not be that helpful for normal people seemed perhaps to help me to fight it off quicker than I might otherwise have at the time.

devonrr
devonrr
in reply to AdrianUK

I attend the most remote acute hospital in England and from what you have written in the past about your FCR treatment and journey I have had a better FCR outcome and experience. I rest my case!

AdrianUK
AdrianUK
in reply to devonrr

I have never said that all local treatment is bad. If I remember correctly from our previous conversations your unit has a visiting consultant who at least has a special interest in CLL and also works in Exeter which has a GREAT reputation for CLL, and I believe they also run FLAIR. I have never advocated that everyone must be seen in the top three or four centres in the country led by published experts who speak at international conferences. But being able to run FLAIR (which will close soon) is a great proxy for being at least a special interest place in CLL and also requires the kind of close co-operation with specialist hospitals which really should be standard for all haematologists in the country.

Hi I was really a bit alarmed to read that you thought haematologists knew nothing! Since my diagnosis in 2015 I have only ever seen my cons haematologist. In fact I had a telephone consultation only yesterday due to the virus. I was very pleased as he said my bloods were excellent no change and he was happy and would see me in 12 months. After reading this do I now doubt his ability...... I have to say no otherwise I will be forever thinking and worrying and not enjoying my life.

Zia2
Zia2
in reply to robertsw

Surely if you’ve been happy for 5 years with your hematologist and care One post won’t have you doubt his ability. It’s just Adrian’s opinion from what he has experienced and/or read.......

robertsw
robertsw
in reply to Zia2

To be honest I just read the first message about haematologists know nothing? Never even read Adrian’s opinions. You are right I will not doubt as I ended my message. Keep well and safe

Zia2
Zia2
in reply to robertsw

You too!!

AdrianUK
AdrianUK
in reply to robertsw

Like I say, my bad! I was in a down moment yesterday with it being the anniversary and all that and I was tired and I was not actually trying to say what came out! The truth is with all doctors is we know a little about everything but as you specialise you tend to know more and more about less and less.

So whilst a local Haem may well know more than enough to safely manage someone through an uneventful watch and wait a specialist who sees a lot more cases will be just know more. It might be that if you need treatment you might want a specialist second opinion at that point (even if your local doctor then delivers the care)

So for example when my tonsils grew really large that quite surprised even the specialists tho they had seen it before. CLL can do all kinds of weird things so we definitely have to have any new symptoms checked out and ideally if possible you'd want to see someone who sees a lot of other patients with CLL too. But of course geography plays a part as well. I really liked Prof Hillmen but couldn't travel to Leeds more than just the once to go and see him. Turns out he does a private clinic in Harley Street occasionally though so I did go see him a few months after chemo to have a second opinion and longer discussion than you can get on the NHS about my likely prognosis.

Interestingly even Peter was less interested in discussing things like what I call my three muggers who follow me around: fatigue, infection and inflammation from allergies/autoimune. It almost feels like we might need to see a different kind of specialist all over again in between the obvious relapses where treatment changes are needed. These days I now have an immunologist in my team which has been good although so far we have not been able to get on top of things fully.

Yes, at least yes if you are in UK. I am assuming you are in UK, as am I. There are good local haematologists in general hospitals and there are those less good. My local hospital has just had another bad CQC report. I was in that hospital when the inspection happened and the CQC have got it right. When I originally went for my first haematology appt I wasn't happy, for lots of reasons. When I was admitted in January - unrelated to CLL or Covid, I asked my consultant not to pass the fact I was an inpatient on to the haematologist. Getting a different haematologist is the best thing I ever did. If you live anywhere near it, The Christie in Manchester is excellent.

Hidden
Hidden

You know what shocks me about the replies in this thread? The nastiness in the tone in the attacks against Adrian. Whilst the points raised are valid, to chastise someone who is clearly very well-intentioned is not acceptable. Even correction can be couched in kinder terms. If you want someone to be more careful in their communication style, perhaps you could offer a better example. What I've seen is nothing short of bullying. If my standing up to you earns me a ban, then so be it.

Zia2
Zia2
in reply to Hidden

I couldn’t agree more. It’s Adrian’s opinion and experience as a Patient.

AdrianUK
AdrianUK
in reply to Zia2

As I said I was WRONG to say that local haematologists know nothing about CLL. Clearly they all trained in it as one of about 100+ blood cancers. The issue is that ---some--- of them don't prioritise it or understand it as well as the experts do (how could they possibly?). We have seen evidence of this again at the moment with some local doctors taking it on themselves to contradict the national guidance which people like Prof Peter Hillmen supports and think they can identify which of us are really at risk of COVID19 and which could safely ignore the shielding instructions. And again I know I have not been the only one who found a local haematologist was offended, offensive, and obstructive when asked if they could arrange a second opinion. That is not acceptable of course. But it didn't stop me getting life saving treatment because my GP was willing to refer me anyway.

Hidden
Hidden

And another thing.. Adrian started his first reply to this thread with the words "Here is my view..". So are we not allowed to present our views here, based on our experience, without the safety of knowing we won't get jumped on? Disgraceful.

mrsjsmith
mrsjsmith
in reply to Hidden

You may well be reading the edited comments not the original.

Colette

Hidden
Hidden
in reply to mrsjsmith

Regardless, could people not respond to the heart of the person, and see what the intention is, instead of launching verbal attacks and accusations of being alarmist? Anyway, I'm not going to further add to the problem. I'm done here.

Newdawn
NewdawnAdministrator
in reply to Hidden

Peasblossom, if you’re unhappy with my comments, I made them to correct Adrian’s original comment that ‘local haematologists know nothing’. He’s rightly now edited that and explained it was inappropriate.

It has to be remembered that this is an open post which can find its way onto the internet and this site is affiliated to the CLL Support Association who would never make and could never be associated with those disparaging comments about the many excellent haematologists in this country.

I don’t think my comments were unpleasant but merely made to correct this assertion and to help reassure the many thousands of CLL patients who are under the care of their local haematologists and receive excellent care. You’ll see there was immediately a post from a member who had been unnerved by Adrian’s comment and Admin have a duty to prevent erroneous comments being made on the site which lead to misplaced anxiety.

Regards,

Newdawn

Hidden
Hidden
in reply to Newdawn

There are ways and ways of doing it, and yes, I regarded your response as unnecessarily 'sharp'. Perhaps where correction is needed, it could be handled with more sensitivity. Unfortunately, you were far from being the only culprit. But you and your fellow admin effectively led the charge.

Newdawn
NewdawnAdministrator
in reply to Hidden

I loathe bullying in any form Peasblossom and always carefully try to phrase my comments in a way that don’t appear sharp or personally critical. I’ve re-read my responses and can’t find any words or expressions that could infer that. My reply was entirely factual.

Adrian and I have had discussions on this subject of ‘experts’ many times both publicly and personally and he accepts I don’t entirely accept his position. However, that was not eluded to in any way on this post.

I’m sorry that some of the responses have upset you but I think we need to now draw a line under this and not divert from the important question Ron asked.

Newdawn

AdrianUK
AdrianUK
in reply to Newdawn

And to be 100% clear I did NOT think that I was bullied in this thread. I essentially made a slip of the keyboard when I was a bit emotional and have since corrected that thanks to what I perceived as a helpful comment. This is the problem with text of course we can easily misunderstand the emotional intent. Perhaps it might be a good idea to lock this post as I certainly hadn't noticed it was unlocked. These matters of expert vs local are obviously emotive and will be fundamentally influenced by our local experiences. I am aware for example that the big hospital I attend can sometimes feel a bit impersonal and so I can well imagine that a compassionate local service who were well connected and knew their limitations and would refer for a clinical trial if relevant might well be infinitely preferable for some people. It is a bit like do you choose to go to a big name university or a smaller one that somehow feels more aligned to your own needs?

Newdawn
NewdawnAdministrator
in reply to AdrianUK

I’m only sorry we lost a member over this because that always saddens me.

I’m glad you realise your original comment made some people unhappy Adrian because it undermined their faith in their doctors and maybe felt they were selling themselves short. That’s always a shame when people are very happy with the medical care they receive. The one advantage of local hospitals is you nearly always get the Consultant which has something going for it. The important thing is feeling listened to and having someone who responds quickly and appropriately to problems.

Newdawn

HiddenThis reply has been deleted
AdrianUK
AdrianUK
in reply to Hidden

Hi Scott, the fundamental skill of a medic is pattern recognition. If you don't quite fit the pattern of the doctor's experience you are meeting this can be an issue sometimes. I have always hated the times even very top experts have scratched their heads and said "Mmm this is unusual..." one example of that even at the top expert site was my tonsil situation which does happen but not that frequently (perhaps partly because so many of my parents generation who are a more typical age for CLL had their tonsils removed as kids). So if you see someone who sees hundreds of cases with your diagnosis you just sometimes find they are more able to deal with the unusual... It is also true that a bit of compassion and humility go a long way in what you call a white coat!

Hi Vindicatrix,

My comments are more related to Adrain's reply. I am not trying to put words in his mouth, defend, or support anyone, but rather offer some perspective to question.

Having read much of Adrian's post's, I believe that he is always well thought and intentioned. In the initial response the text did not present the thought accurately as intended. I also believe as admin Newdawn pointed that out, he agreed and made an amendment.

In the view of seeing a medical expert as a weapon to fight CLL, any weapon is still a weapon and better still than an empty scabbard. Yet given a choice, I would always choose Excaliber over the sword of Damocles.

We really are in this together.

JM

You got the nail on the head. To be honest I think this forum works best when we function as a hive mind. I will always be biased and a voice for the benefits of expert care for my own personal reasons. Newdawn stepped in with the other perspective and has explained previously her own personal reasons for preferring local care wherever possible but did move her care to a FLAIR site at treatment time.

And for sure a reasonable compromise position is stay local if you want to during watch and wait but be aware of the need to push for aggressive treatment if you do get an infection, and perhaps ask for a second opinion from a FLAIR site (even after the study is over) prior to starting treatment which you could even have back at the local site if you feel comfortable there.

I am a great personal fan of clinical trials however not just to help the future but because I genuinely believed that at the time of my first treatment it was NOT clear which was the best for me long term. So after all the agonising and advice I was happy to let a computer effectively flip a coin for me and therefore know that I ended up with a 1 in 3 chance of getting what was the best treatment for ME as an individual and not even my group of patients. And for me anyway that worked out well so far which is not to say I might not have done better particularly if I had got I plus V.

Trials will always be done in sites that at least have a special interest in the disease. Perhaps it might be helpful to conclude this conversation by sharing the map I produced a while back now showing where the 100 or so UK Flair sites are situated. The vast majority of these sites should be more than adequate to treat people with CLL. I do wonder how may of them have a 24/7 nurse helpline. It might be more than we realise as perhaps it is not well advertised to patients.

Here is the link of what I would call "CLL special interest sites" since they by definition are running a clinical trial though not all of them would have a published expert at them. As far as I know every single national expert in CLL is based at one of these hospitals. And as I initially said it is fine to be seen by a registrar under the supervision of one of these teams since they will be part of a multidisciplinary case discussion and supervision. Sometimes the registrars are more compassionate, more thorough and have more time to explain things than the big name doctors and I have had no issues with that whatsoever. Anyone who has paid taxes into the UK government should not ever feel guilty for asking their GP discreetly if they could arrange for a second opinion appointment with whichever site they want to attend:

google.com/maps/d/u/0/embed...

Newdawn
NewdawnAdministrator
in reply to AdrianUK

I had to move hospitals Adrian because mine didn’t do Flair although they’d been involved in other clinical trials. The doctor running my trial professes no special interest in CLL and doesn’t even list it on his profile of clinical interests. It’s just another local hospital so this is where you and I have divergent views. It does have a bigger haematological infrastructure however.

Yes, hopefully Flair will be conducted at a hospital with a particular interest and expertise in CLL but there’s lots of reasons why hospitals generally want to be involved in trials to raise their profile and income. Most are just local hospitals with local haematologists. Many are superb too. The tertiary centres simply cannot take every CLL patient as a special group.

Newdawn

AdrianUK
AdrianUK
in reply to Newdawn

If every patient applied to have a second opinion at a Tertiary service then the services would reconfigure and money flows through the system. So I know for example that recently UCLH was looking for an additional consultant for their CLL clinic about a year ago. But I do slightly disagree in that to prove to the central FLAIR team you are skilled enough to run that trial you are proving at least a level of interest in CLL. And more crucially than that a willingness to connect with and work with the central experts who actually review the cases to make sure they believe they meet the entry criteria. The single most important attribute of any doctor is the humility to know own limitations and therefore ask an expert for advice or support or indeed refer a patient on to such expert. Most local haematologists hopefully have that but sadly not all.

Newdawn
NewdawnAdministrator
in reply to AdrianUK

You and I have debated this ad nauseam over the years Adrian and have a different take on it. Money doesn’t always equate to resource availability.

The medic running my Flair Trial took over from the original haematologist running it but something tells me he didn’t have to pass an eligibility test just be a competent haematologist willing to take it on. Which he is. All the day to day stuff seems to be done by the Trial Co-ordinator who isn’t exclusive to blood cancers.

Newdawn

AdrianUK
AdrianUK
in reply to Newdawn

Surely at least give them innovative in that they want to do a trial? And collaborative? I personally would have huge concerns about any haematologist who wanted to treat CLL that also actively tried to block their patients from at least considering FLAIR in the current climate. And there are definitely GOOD local haematologists. The one who nearly killed me by his neglect and hostility was not one of them I am afraid. And sadly I have heard a few similar stories in terms of not wanting to give a patient their choice of a second opinion. I think we both agree that patients should be allowed to CHOOSE who sees them local or national expert, or at least a centre capable of and interested in running a large simple clinical trial. It should NOT be dictated to them. There are some advantages to both of that I will concede.

Newdawn
NewdawnAdministrator
in reply to AdrianUK

That looks like a different set of arguments and issues to me Adrian but to be honest I’m exhausted at the moment so will need to pick it up at another time.

Newdawn

This says everything that needs to be said on this subject, regardless of personal opinions about the details.

"The single most important attribute of any doctor is the humility to know (their) own limitations and therefore ask an expert for advice or support or indeed refer a patient on to such expert."

That includes experts asking other experts, and well established doctors asking those coming up, because they may have newer ideas. My specialist worked regularly with an incredible specialist in another field (known internationally) on difficult cases, including mine. They both were able to see outside their box and to accept and consider each other's opinions. She also worked closely with a younger doctor in the department, because he came at things differently (He is now my doctor). And because my case is complex she and my nephrologist made decisions about my treatment together.

I've dumped several doctors, some very well known, who missed out when humility was handed out.

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