A few weeks ago, I posted for advice on securing a referral to a local (ish) CLL specialist. Following some useful comments and suggestions I made an appointment to see my GP and promised to post my progress on this site...so here goes.
My GP says he is unable to help me with my request for a referral to a specialist. He explained that a GP (primary care) could only refer up to the next level of care, i.e. the haematology team at my local hospital (secondary care). The hospital team could then refer up to the next level, i.e. a CLL specialist (tertiary care) but the GP was not able to "skip" a level (from primary care to tertiary care level).
I assume this explanation is correct so I will now have to wait for my next hospital appointment before I can continue with my quest!
I am due at hospital for my next blood test in a month's time so will again post an update here.
Hope my experience/info is of some use to anyone out there in a similar position.
Keep well, everyone!
Debs.
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That's really helpful information to feed back on Debs but disappointing for you. I'd be interested to know if others have had the same advice because it's of some concern if we are required to ask the Consultant to refer us to another more 'knowledgeable' Consultant particularly as some seem to imagine they're specialists in their own right!
I mentioned once at my Haemo consult that I'd want a referral to a CLL specialist if treatment was being discussed as the answer I received was 'why?'.
I did point out that the overall survival rate was said to be 2 yrs longer for patients under the care of a CLL specialist (I'm sure someone will have the research study to hand) and he seemed genuinely surprised.
I'm sure they can't impose these restrictions is we offer to pay for a private consultation however.
I went to see my GP with a request for a second opinion from a particular consultant in a different hospital not too far away. It was no problem and the correct way to proceed. My GP was very helpful. Upon getting the second opinion, I then asked the CLL specialist to take me on as his patient, which he did. I am very happy with that decision. I am still in w&w even though my local haematologist who doesn't have a special clinical interest in CLL was moving me to treatment over two years ago! My understanding is that we are entitled to a second opinion! Maybe get a second GP opinion.
Thanks for sharing your experience, Dotty2dot - I was hoping there may be some CLLers on here who have been down this route already!
So can you please just confirm - did your GP refer you directly to your CLL specialist or did you first go through the hospital consultant?
I have to say that I'm not particularly concerned about the quality of treatment I'll receive at my local hospital (I understand we have a first rate local haematology team!), but I think it's understandable that I'd like to be in a position to benefit from the knowledge and experience of an expert in her/his field....who wouldn't?!
I'm a bit of a stranger to our healthcare system...but I suspect I'll be getting more familiar with it very soon!
This is the advice from Macmillan...they suggest the referral CAN be made via the GP OR the specialist which I'm pleased to hear and is confirmed by dotty' experience;
Possibly your GP just doesn't understand the system Debs;
It would be really helpful to hear of how other members accessed specialist second opinions or changed Consultants in the UK as I've heard such variations in experience.
I asked my local hospital consultant for a referral to another consultant (who is an hours drive away but is an international CLL expert). My reason was that they are doing trials with non-chemo meds there, which is not happening in my home town. My local consultant was very happy to do that. It helped that I had a definite reason (looking for non-chemo trials).
I did a lot of this communication by email with my consultant, so I didn't have to wait for my next appointment with him. So, if your GP is unhappy to do it, you could try emailing your local hospital guy, rather than waiting till your next appointment with him.
For me one of the hardest parts of diagnosis was understanding the system , learning to navigate within it and my rights. GP's may interpret need and implement things differently across different healthcare trusts.
Understanding CLL myself was big a part of this, there may be no need for speed but, I didn't feel that way at diagnosis myself.
When I was diagnosed I was fortunate to be automatically referred by the GP to a local hematologist who in turn referred me to the local University hospital CLL team because of physical concerns. This was a Wales post code lottery result.
Hematologists should have a good working knowledge of CLL and if not CLL experts themselves will be consulting with one who is part of your MDT.
I believe in England NHS patients can request a referral to a consultant anywhere in the England and are entitled if they can get there under their own steam.
NHS choices provide information for patients about NHS referral process and your rights.
The NHS now gives you more choices about your health care.
This is a guide to your choices about your NHS care and treatment. It explains:
• when you have choices about your health care
• where to get more information to help you choose
• how to complain if you are not offered a choice
The Choice Framework explains when you have a legal right to choice about treatment and care in the NHS. The legal right to choice doesn't apply to all healthcare services, however, where you do not have a legal right to choice you should at least be offered some choices, depending on what’s available locally
See Choosing where to go for your first appointment as an outpatient
If you need to see a consultant or specialist as an outpatient for a physical or mental health condition, you can choose the organisation that provides your NHS care and treatment anywhere in England for your first outpatient appointment. (An outpatient appointment means you do not need to stay overnight). You can also choose which consultant-led team or which mental health team led by a named health care professional will be in charge of your NHS care and treatment (employed by the organisation you choose) for your first outpatient appointment. For a physical health condition, you will be seen by the consultant or by a doctor who works with the consultant in their team.
Of course you should seek access to the most experienced hematologist you can find who treats CLL.
BUT, don't forget the importance of finding the most experienced internist you can find who treats PATIENTS who have CLL.
I've been seen at four major CLL treatment centers across the last 12 years, but it has been crucial that I had an absolutely fantastic internist down the street who made sure that I saw "the right" pulmonologist (CLL folks preferentially die of pneumonia), "the right" endocrinologist (think vitamin D and thyroid), "the right" cardiologist (think pulmonary hypertension), "the right" immunologist (think immune deficiency), "the right" rheumatologist (think lysis related gout), "the right" infectious diseases specialist, etc, etc, etc.
I'm just saying, don't forget to find that central physician who will be working with you on an on-going basis -- the one you can call in the middle of the night.
I have to admit that I'm a mere novice when it comes to finding my way around our health services here in the UK. Your words are very wise - a CLL specialist may well be just one of the experts I'll encounter across a wide range of potential health issues in the future!
At least our indolent CLL companion gives us time (hopefully!) to take stock and consider our options.
Thanks very much for your input and for giving me another angle from which to view my situation.
I absolutely agree with you overlander but what you're describing isn't the system I understand and experience in the UK. You must surely be based in the USA to have a physician 'you can call in the middle of the night?'
Oh if only!
I'm afraid the public health systems in the UK (whilst superb generally and universally accessible), grind away in much less responsive and specialist ways. Or am I being unfair?
Very good point. I seem to be collecting "ologists" recently. It is good to have a great primary overseeing everything and co-ordinating things when necessary. She also has several CLL patients, so she understands that an infection for me is not the same issue as it is for most other patients.
I hope that everyone dealing with CLL can use whatever means at hand to find that crucial central physician who can see to it that the patient gets the ideal this or that specialist for the situation. Hopefully this website can help folks to ask the right questions about non-hematologist specialist care.
I've just had to delete divisive political content - the first time I've needed to do this. Please, please refrain from making any political statements in your submissions. Just remember that those of us who have the privilege of living in democratic countries usually face a situation where roughly half of the population would prefer one political party to be in power and roughly the other half would prefer that it was the other major party. So if you are so rude as to make any political comments on this page, you are going to insult about 50% of your countrymen.
I would like to add that what I find most rewarding about this site is the fact it is international in scope... different healthcare systems, different treatments, different views... one CLL.
Think you have lots of good answers, but I'll just try to add one.
I was seeing my local haematologist every 3 months when my ALC started to appear to have taken off (20 to 40 but of course you have to remember the over 30 rule before worrying about doubling)
So asked the GP for a referal to the big city hospital. Was really pleased when I got there to find out I could take part in research by donating a few extra samples - zero effort from me. And fantastic to meet all those people who are specifically interested in CLL/SLL.
It may help if you know the names of some of the consultants and researchers and why you want to go to the big hospital. Hopefully all these posts will prompt some ideas and thoughts.
One thing if you care to say very roughly where you live then there is probably somebody here on HU that can recommend where to go and who to see.
Don't worry Debs, the hospital team will have a MDT multiple disciplinary team meeting once you are referred and allocate you to the Cll specialist at that hospital. Hope this helps. Of course once you get to the hospital you can also request to see a particular Dr. I always say I wish to see my own Dr when I book in at reception, otherwise you may end up seeing his registrar or similar. When I was on WW I was only being seen every 6 months so did not feel it was unreasonable to request this. Now I am there every month and he requests to see me anyway. Be proactive- don't be aggressive or rude but stand your ground. Hope this helps and good luck!
I have, as expected, received lots of useful advice and comments following my initial post.
I have decided to "side step" my GP at the moment, following his comment that he was unable to refer me to a local CLL specialist (too much of a jump up the hierarchical ladder!).
In early July, I have an appointment with my doctor at the haematology unit of my local hospital when I will again ask for a referral to a local specialist.
I will post any update on here following my July appointment - fingers crossed!
Thanks again for all info and support so far - it has been most helpful.
Try contacting the secretary of the the specialist CLL consultant and asking what is the best way to proceed. The haematologist may be dismissive but he cannot refuse to refer. Take somebody with you at your next appointment with him.
My apologies if my suggestion has been covered and I have missed it as I have scrolled through. If I was looking for a true specialist to care for me I would do some research and go to my GP with the name and contact details of the CLL Specialist. Sometimes we need to lead and not follow.
My own experience in Sheffield is to have a Haematology Consultant who discusses treatment with a multi disciplinary team. At first I was surprised at how many people knew me by name at the hospital. I then realised that they all had an input to my care; fantastic reassurance. When there was a need to step off the well worn care path, ie when we were considering a stem cell transplant, my Consultant asked if it would be ok to ask for a second opinion from a CLL specialist. I then went and met Prof Hillman in Leeds.
Thanks for your input - and there's definitely no need to apologise!
Early this week I did approach my GP, armed with the name/location of the CLL specialist that I would like to be referred to. Unfortunately, he told me that there was a hierarchical structure in the NHS and said he was unable to directly refer me to a specialist.
There has been plenty of feedback on this site which suggests fellow CLLers have had very different/differing experiences when trying the same route with their GPs. ...it certainly has encouraged me to learn as much as I can so that I know whether I'm being given correct info or am simply being brushed off by an uninformed (or uninterested?!) professional!
I am due back at my hospital to see the haematologist early next month. I will be speaking to her about possible referrals (to CLL specialists) and what additional support is in place at my local hospital. Your experience with your haematology team sounds very positive - I hope to have a similar experience with mine!
There's definitely a lot to learn/know...both relating to our actual condition and also about the best care/treatment available to us. But we seem to be quite a proactive community (certainly the people on this site are, anyway...!) and aren't afraid to occasionally make a nuisance of ourselves (in a positive/respectful way, of course!), until we get a resolution.
Lets keep going!
Thanks again for your input.
Keep well!
Debs.
Thank you all, for the great information. It's really appreciated._
I did try to see a specialist whilst in Kings College hospital last year but was fobbed off back to my local hospital in Locksbottom. The explanation was that they were all part of the same group and reviewed all CLL cases regularly between the specialist and the hematologists.
I have been told that, closer to needing treatment, I would be referred if I wanted.
For now I really dont mind. I was stage 3, prior to being run over, with very swollen spleen and lymph nodes, plummeting hemaglobin and platelets. Since I had my spleen removed, hemaglobin is almost normal, platelets are soaring ........and of course I no longer have a swollen spleen.
Blood counts are also back to lowish levels.
From a cycling point of view, I am doing better than ever and go for many days without thinking too much about CLL.
Very interesting, Mike. Have I understood it right, that you never actually had any treatment (ie chemo or other meds) for your CLL, but after your spleen was removed (even though not under the circumstances you might have chosen!), your blood counts went back to normal (almost)? You might even say you were back to stage 1 or 2 now? Even more important, you're feeling much better and are back on yer bike!
Makes me wonder if removal of spleen (for those of us with very enlarged spleens) would be a good idea for lots of us?
No, I've not undergone any treatment yet. I dont have all the numbers with me but, pre splenectomy, WBC was around 27k and increasing slowly, hemaglobin was 92 and platelets 55. There were mutterings of imminent treatment. I was suffering from fatigue and maintaining a consistant fitness level for cycling was difficult. I would get back from a ride and feel totally drained for a few days.
WBC is now 13k and stable for the last 9 months, hemaglobin 130 and platelets 300. Additionally I can pop out for a 50 mile cycle and still feel good when I get back.
Regarding the operation, I imagine recovery from splenectomy performed by keyhole surgery would be fairly quick. My operation started off that way but the 2.2 kilos of spleen they recovered wouldn't fit thru the holes......by far the worst part of the recovery was from the 10 inch scar and the related cut through the stomach muscles.
This is very useful as I wrote over a week ago to my consultant asking for a referral to a CLL specialist. This follows conflicting advice on starting treatment for my low platelet count which has been falling since 2012 and now stands at 77 from two of his unit doctors.
I did copy in my GP to the letter.
I am awaiting a response which will hopefully come before my next appointment. If a response is not forthcoming I will raise a complaint about the conflicting advice and the failure to respond.
My other option would be to seek a private consultation with the specialist through my GP and take it from there. I am not made of money but I am concerned enough to pay to get the objective and specialist advice I think I require.
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