NHS vs Private

[snowstorm8]

I've just recently been told I have CLL in the early stage. My question to UK members is will I get the necessary medical support from the NHS or should I be looking into going private. I'm in the Gloucestershire area if that makes any difference. Thanks

[Fowey2009]

Hello

I am sorry you have had to join this group but hope that you will find it very supportive.

It is my husband who has CLL and was diagnosed almost exactly 10 years ago. In our experience the NHS has been brilliant. In most cases the private consultants are the same ones who work in the NHS anyway and the only difference will be fancier consulting rooms. Once in the NHS system the regular consultations (every 3 /6/ 12 months depending on whether you need treatment) get put in the diary and just happen. Whilst private may be slightly faster at initial diagnosis, the relatively slow moving nature of CLL means that isn’t a problem.

For us the most important thing has been a regular team who have known my husband’s journey. His main consultant and specialist nurses (who are just as important as the consultant) have been there for the whole time which has been really reassuring. In that time we have seen his consultant develop into a big cheese in the haematology world. They have been exactly the right team for us (even though he is not classified as a ‘CLL expert’ he is certainly extremely knowledgable). As I wrote in a previous post the haematology world in the UK is quite small and very well networked and they all seem to know each other).

If at first you don’t find someone who suits you you can always ask your GP for a referral elsewhere.

All the very best with your journey. You will learn a lot on this forum which is one of the most evidence based forums that I know.

Beryl

[Jm954 Administrator in reply to Fowey2009]

Beryl, great answer, I couldn’t have put it any better!

[stevesmith1964]

If you have private insurance , go for it, gives more choice and a personal service. I was diagnosed stage 4 in November 2020 and have excellent treatment at the Spire in Worcester

[Pageboy]

I think it depends on your local hospital and the expertise there. And whether or not you find the calmer, less busy, more time (slightly!) atmosphere of the private sector important. I found the NHS more than fine on watch and wait. It’s mostly a case of monitoring your bloods and talking to a good heaemotologist to get an idea of your individual CLL pathway. I moved to private when treatment started, but only because I wasn’t able to get the recommended treatment (for me) on the NHS at the time. I’m fortunate that the care I‘ve received in both NHS and privately has been very good.

[Frankwt]

I’m in Gloucestershire too and my GP praises the haematology services in Cheltenham

[Jm954 Administrator in reply to Frankwt]

there are excellent haematology services at both Cheltenham and Gloucester Royal who are part of the same NHS Trust.

[Frankwt in reply to Jm954]

exactly!

[Hilo13]

I was diagnosed in 2016 and as I have private health insurance I went to see a consultant. I told him my health authority and his words were. “ your consultant is excellent and you will get the best care and treatment under the Haemotology department.” at your hospital . He wasn’t wrong I am more than Halfway through O and V I have nothing but praise for the team and my care.

Obviously it is your choice but I think the previous post was probably right the consultant you will see will most likely be NHS anyway . Good luck .have a good day .

[OTBCdave]

I agree with Pageboy. There are no CLL specialist in my area so I chose the private route as I already had health insurance. However be aware that after you start treatment your health insurance premiums will increase significantly. I guess you could choose to revert to the NHS at the treatment stage.

Good luck with your CLL journey

Dave

[Nucleusman]

the important thing is your relationship with the haematologist. Mine in Hammersmith is quite excellent. And when I did suggest I use my private medical insurance he said what for. If you have just beeen diagnosed you will probably go through the watch and weight stage before any treatment. This could last a year or so with regular visits. If and when you get the better drugs like Calquence then better to stay NHS. It is always about confidence in your haematologist. I am very lucky with mine

[richardp]

Firstly commiserations on your recent news. I have private medical insurance and used it as they were trying to identify , initially, whether I had peripheral neuropathy , eventually after various tests being confirmed as CLL- 8 years ago next week and still on W & W. Saw about three different consultants and each time appointments were within 48 hours . My Haematology consultant who carried out the various scans and biopsy told me when CLL was confirmed that I might as well switch to the NHS as I would still be seeing him anyway and there was a great team at the RBH in Reading.

The NHS has worked pretty well , through three monthly then six monthly and now annual check ups. About 3 years ago I switched to Dawn Haematology whereby I don't need to visit the hospital anymore and just get blood tested and then after about 3/4 weeks ( which I think is too long ) I get a letter from the Dawn Consultant confirming the results and that there has been no significant change so next blood test in 12 months time! I have found the way to access my results quicker and the only thing I miss under this system is face to face contact and the physical examination of spleen and lymphs etc .

I can contact them when required by phone which I did when I eventually caught covid and everything worked well.

So, good luck in the future and I think that much depends on the local capabilities of the NHS in your area but certainly on a day to day basis , the NHS works for me in respect of my CLL.

[SLLJOHN]

A benefit of being private is access to first line novel agent drugs if you need them….Alcalabrutinib etc.

[Nucleusman in reply to SLLJOHN]

I already get this drug on the NHS. And if your private medical insurance excludes chronic conditions you may have problem. Been on Alcal since October 2022 now told I am in remissionHard to believe but have to continue to take drug. Someone told me it costs NHS £5000 a month- so be careful with private treatment

[FairweatherSailor]

I would recommend staying in the NHS. The main reason for this is that consultants working in the NHS have the support and knowledge base of a Multi Disciplinary Team (MDT) and a much broader base of facilities. Consultants working in the private sector in the UK generally do not have this. It's something that I am well aware of as I will need to start treatment soon and I know that the consultant has been discussing my treatment options with the MDT and has given me feedback. The facilities at the Marsden where I am supported are outstanding. My wife worked in a clinical role in the NHS for her whole working life and this was certainly her experience. On the other hand I am currently suffering from a slipped disc (very painful)and opted for a private MRI / consultant appointment because it shortened the wait time - but a slipped disc is a much more straightforward thing than the ongoing support, advice and treatment needed for CLL .

[mrsjsmith in reply to FairweatherSailor]

Some useful points here especially about the MDT meetings.

I personally think it’s about finding a consultant you like and trust. Perhaps see if any have done any recent zoom meetings with any of the Leukaemia charities. They should be easily available online.

Colette

[Blue-bird_]

Just adding my two cents. When my partner was diagnosed last year, I Googled top 10 CLL doctors in England. A few of the doctors that came up worked at King's College Hospital, which is the hospital that oversaw my partner's care. We weren't seen by those specific doctors, but the fact that they train/work at King's College means they use the same research and protocols. Personally, I didn't see a benefit to going private in the end. It would've costed more as time went on and my partner is now in remission after being treated by the NHS.

I would at least go to your initial appointments and find out what your NHS treatment plan is. Look it up on Google or ask here. If it is in line with the latest guidelines, then I would stick with the NHS. I also want to note that my partner has a dual diagnosis of CLL and CNS lymphoma, and is in remission for both after only being treated by the NHS.

All trusts are not the same, but if you feel reassured by your local team, I would stick with them. Still being vigilant, of course and not too trusting. Ask as many questions as you need to.

[SERVrider]

I started with falling platelet levels and my GP covering type2 diabetes referred me to the Haematology department at the Royal Surrey. The haematologist did some further tests and referred me to the immunologist because of my very low IgA, IgG and IgM levels. she, in turn put me on SC replacement immunoglobulin. I continued to see the haematologist too and was then referred to the ENT specialists to carry out a cervical lymph node biopsy which then produced a diagnosis of CLL, confirmed by a BMB carried out by the haematology clinical nurse specialist. The haematologist initially proposed Obinutuzumab and Chlorambucil but deferred treatment because of the onset of Covid and the risks of infection on a badly depleted immune system. She then got me on a compassionate early access scheme for Acalabrutinib long before it was licensed in the UK and I started on that in June 2020. (It was only approved by the FDA in the US in December 2019). In the meantime, she also referred me to the respiratory department. The MDT has worked seamlessly and when I developed a possible bowel tumour (which turned out to be a benign polyp) and needed surgery, the haematologist and immunologist worked together to transfer me onto IVIG for 2 months and to suspend the Acalabrutinib before and after surgery. Because of the risks of secondary skin cancer, she has referred me to the dermatologist who has excised a few basal cell carcinomae and who has me on a programme of 6-monthly whole body checks. When my brother in law developed pancreatic cancer, he went privately and there was no multi-disciplinary input at all and no continuity of care but he saw his oncologist in a much plusher room than the out-patients' department of the Royal Surrey. I have one hospital number and whoever I see from whichever speciality, they have the full story up on their computer terminal. I cannot speak too highly of the NHS and the Royal Surrey County Hospital who have worked with the Aldershot Centre for Health, Frimley Park Hospital and Haslemere Community Hospital.

[Newdawn Administrator]

I’ve supplemented my CLL care and it’s complications with private consultations during the course of the last 10 years but for day to day, ‘bread and butter’ CLL care, it would have to be the NHS every time. Private care and the occasional consultation or test can be enormously useful but I’m not convinced that there’s anything to beat the infrastructure the NHS can offer for haematology and blood cancer services.

My other concern would be the financial limits of some private care packages, CLL can be very long term and massively expensive. It would need to be a mega brilliant private care plan that would accommodate that.

Newdawn