I'm hoping the UK members of the CLL family can share their experiences with me, and I apologize in advance if my two questions sound elementary.
I'm an UK citizen, but have lived overseas for many years. I'm looking to move back to the UK to be near family. I've had CLL for about 4 years and am on watch 'n wait. I admire the NHS hugely. Should you need treatment, are all treatment options covered by the NHS (incl. more recent treatments like Ibrutanib) or do you need additional private insurance?
Is there a center of excellence for CLL in Scotland?
I'm in the south west and was diagnosed 12 months ago, so far the haematologist I've seen isn't very helpful. On my second visit I had questions about boosting my immune system and other things and all she would say was" we don't do that until your very sick"
I'm hoping this isn't everybody else's experience.
So unfortunately I can't answer your questions as they won't tell me what can be done.
I'm sorry to hear that. I live in the US and had a similar experience. I switched from a general hematologist to one specialized on leukemia. I had to do a bit of digging to find the right person, but feel that my new doctor is more informed and more open to my questions. Good luck!
Replying to Mrtim I am also in the South West but with a male consultant not blessed with conversation, I prefer the speciality grade doctor!
This site sometimes dazzles us with treatments especially the USA. But we are the NHS and there are budgets so treatments and "extras" are used when needed. When needed is the phrase. Your haematology clinic will give appropriate treatment when needed. Even advice on keeping healthy can be sketchy because we are all different. I find the clinic nurses have the best practical/ daily living advice because they speak to people more in a non clinical way.
My advice is to gain knowledge and have a healthy diet with exercise. If your CLL progresses you will be fit to cope with treatments and have the knowledge to discuss. Yes, the consultant will discuss but not in the early stages.
Hi. I can't tell you anything about Scottish CLL expertise nor about your eligibility for NHS treatment as a returning ex-pat, sorry. But...
I do know that FCR is the regime used for most CLLers that get to the point of needing to start treatment. If you have one of the variants that doesn't respond to FCR then I believe Ibrutinib is available - but my variant was suitable for FCR so I never went down that route. There is a trial running called Flair, which is testing Ibrutinib against FCR for first time treatment. I was randomised to FCR and achieved MRD negative status, so I'm very pleased. I've been told I'll get Ibrutinib if if/when it comes back, as it's already approved for use if you've had FCR before
I was treated at Royal Bournemouth. The whole team there were fantastic. Seemed like a centre of excellence to me!
Hi Lachlan, as a returner to the UK, it might assist you to have this bit of background to how the NHS is organised. I'm afraid I can't advise on a CLL Centre of Excellence in Scotland as it's outside of my area but other Scottish members may know. Generally in the UK, CLL Care is delivered in the nearest hospital to us geographically with a haematology department. Standards can be variable so it is worth seeking out a CLL specialist or at least a hospital with a track record of trials and CLL expertise.
Ibrutinib is only available in the UK as a first line treatment if there's a TP53 or 17p deletion or chemo is completely unsuitable. England and Scotland run differently in health terms because whilst England and Wales are regulated by clinical guidance set by NICE (National Institute for Clinical Excellence), in Scotland the role of NICE is split between the Scottish Medicines Consortium (SMC), which appraises new and existing medicines and treatments, and the Scottish Intercollegiate Guidelines Network (SIGN), part of NHS Quality Improvement Scotland, which produces clinical guidelines in aspects of healthcare.
This is what NICE are responsible for (and why there's been an ongoing battle with them over the approval of Ibrutinib and other meds);-
* Technology appraisals - guidance on the use of new and existing medicines and treatments within the NHS in England and Wales. These appraisals determine whether it is cost effective for licensed treatments to be made available on the NHS.
* Clinical guidelines - guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS in England and Wales.
* Interventional procedures - guidance on whether interventional procedures used for diagnosis or treatment are safe enough and work well enough for routine use. Interventional procedures covers internal examinations using surgery or other invasive methods and treatments using lasers or radiation, such as x-rays.
As a result of some independence, the Scottish Medicine Consortium (SMC) have given the go ahead for the use of Venetoclax as explained in this article. It the first part of the UK to have this availability I understand;
Primary health care in England is under the control and direction of Clinical commissioning groups (CCGs) which are NHS organisations set up by the Health and Social Care Act 2012 to organise the delivery of NHS services in England. Whilst they can theoretically act independently of NICE in terms of guidance, they never do and GP surgeries are heavily regulated in terms of what they can prescribe and deliver. As an example, should I require a specific medicine which the CCG has advised my GP surgery not to prescribe (usually for financial reasons), I'd have to fight the CCG and not my GP because he is subject to sanctions from them if prescribing rules are contravened. I'm already claiming 'clinical exceptionality' to receive certain meds!
This information is important because my Scottish friends assert that England is too heavily regulated and they firmly believe healthcare in Scotland is better. Prescriptions are free for all in Scotland (but free for cancer sufferers anyway in England). Politically, it's one of the issues driving some to fight for Scottish independence but best not stray there!
This all sounds very bureaucratic but please don't be put off. In reality the patient is rarely subject or even aware of the over-arching structures of health provision. It shouldn't be necessary to ever have to self fund CLL care in any way in all areas of the UK. The main thing is finding the right location, establishing 'ordinary residence' and the right healthcare for you returning to the UK and I wish you well with that.
Thanks very much Newdawn. I've benefited from many of your replies to other people's posts, and appreciate hugely that you took the time to answer mine in such detail. You're a superhero!
Newdawn - brilliant and thanks for setting it out clearly, to me anyway as a UK citizen and resident. Although I try to understand the set-up it can seem complicated. And as you say, I have not had to concern myself with the organisational structures while receiving my excellent NHS care. I trust it has helped LachlanM.
I cant speak highly enough of the Churchill in Oxford. FCR is the gold standard and the NHS care is excellent. Where ever you settle be sure to link up with your local Leukaemia care group where you will get lots of good advice.
I live in Fife. I was diagnosed and treated fairly quickly for SLL, due to a lot of large swollen lymph nodes. I received treatment at my local general hospitals haematology dept. I joined the FLAIR trial and received FCR. MyTP53 and 17p were fine. I am now in remission and hoping for a good long one! My consultant was great and took time to talk through options with me.
I believe I've read somewhere on this site that there is a CLL specialist at the Beatson in Glasgow. But can't remember a name, sorry.
Thanks New dawn for concise history of differences in NHS England/Scotland. I wasn't aware of the ventoclax.
That's great to hear your success! We'll likely be further north but I'll definitely check up on the CLL specialist at the Beatson. Thanks for the pointer
Was diagnosed with enlarged lymph nodes in my neck.i am Canadian and received my treatment at the BC Cancer Agency.i had chemo therapy for six months when they gave me cyclophosmide for one day followed by five days of Fludarabine.in the end of six months,my Cancer was in remission las verified by a bone marrow test.
And now after 35 yeas living Cancer free,my doctors think I have a recurrence of cancer.I am waiting for my blood tests in the end of this month before I go on chemo again.
Question:has anyone had a long remission period as me and what should l look for in terms of Treament?
Many will not need treatment immediately after diagnosis and at the moment there are no good medical grounds to be treated earlier then absolutely necessary. Certainly worth finding a centre of CLL excellence when treatment is getting closer for a second opinion.
Dr Leach and Dr McCaig are both excellent and based at the Beatson Centre in Glasgow. The haematologists dealing with CLL in the West of Scotland meet regularly to discuss cases and ,based on my experience, provide a comprehensive service. I am currently attending Dr McDonald's clinic at the New Victoria and this is fine as long as you do your homework and make sure that you are assertive at the clinic.
Awesome. Tapadh leibh! After far too many years overseas, I'm hugely looking forward to coming home, and this info is very reassuring. Hope you're doing well.
I suspect The Beatson in Glasgow is the centre of excellence in Scotland. In Argyll my blood results are both reviewed by the local vampire centre and copied to The Beatson also. Treatment regimes were recommended after review by specialists at the Beatson.
One thing I will suggest, if you're intending returning to Scotland (clue from your name), try and pick a location where travel to and from a hospital will make sense. I was initially in Ross-shire and the 90 mile trip to Inverness was a serious issue.
Moved to Argyll and can actually see the hospital across on the mainland, peaking distantly above the secret nuclear sub base... While ferries can be a nuisance in winter, only once have they caused a (flipping massive 250 mile) road trip.
Oh, and midges are still an issue here! As is the rain. And politicians.
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Thanks very much! That's good advice
We're thinking of somewhere near to Inverness to be near family. With folks recommending the Beatson, I'm thinking Arran might be a good choice too. Bit of a hike from Inverness mind, but much nearer than San Francisco! Whereabouts in Argyll are you, if you don't mind me asking?
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Dingwall (outskirts) or Elgin would be my preference, both now very grown up little towns. Raigmore Hospital in Inverness is very highly regarded and I'd bet they also report to the Beatson in Glasgow.
I'm on the Holy Loch, about 10 miles from Dunoon. We went "on holiday" at the weekend to Oban to celebrate not needing treatment just yet and it occured we'd done a very American thing, not feeling the need to leave the country let alone the state. Do envy your SF climate, despite two 20+c days in Oban!
I do like Argyll rather a lot but would prefer the nuclear weapon dump was removed. It never bothered when the Americans were here as visual stuff was always happening. Nowadays, a submarine slithers in while another slithers out and that's about it.
Arran - at least you would be accessing the North Ayrshire hospital which, like Raigmore, has an impressive fan club. I've always liked the island as a tourist but, like Oban, prefer visiting. Suspect it would prove to busy in summertime for my personal taste. (Though that's true of much of Scotland anyway, especially with a collapsing pound. My company ran a big picture logic against movements and my software suggests 0.7 : 1 USD is the final destination. Forget parity - Colorado no more for me! )
Anyway, keep in touch and remember to keep your white count low <grin>
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Ah, I love Oban. Congrats on the reason for the trip
I'll definitely check out Dingwall and Elgin, and be sure to keep in touch! Thanks for the recommendations.
Welcome home! Beatson is the unofficial "centre of excellence" in Scotland, but you cannot elect to attend there. You have to be referred. The Beatson is outside my health board and long story short, I had to temporarily leave the care of my consultant to enable the Beatson to look at my case. The only reason the Beatson were "interested" in having a look at me is because I was diagnosed young at 27. After an appointment that was arranged, to be honest, through personal contacts as a favour, they agreed my own consultant was handling my case fine and discharged me back to his care. It was reassuring to hear that from the "experts" but not sure I would ever have been seen by them if I wasn't young and had friends in high places! 😉😂😂
All the best with your move to Scotland and your health 😊
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