Need help NICE guideline and chemo funding!!! HELP

[lisad123]

Dh has cancer and it's one of those arse ones they can't cure but can keep at low enough levels that he can function well enough and if stays low he has good life span.
First line of treatment for dh didn't work, this has been NICE approved for first treatment for everyone with his cancer type. After that there is 2 other drug choices, one has terrible side effects and means dh isn't likely to have great life, he hates being sick. Other one is very new and this is what he is on now. He feels great and rarely gets sick ect.
HOWEVER NICE now have said this drug will not be funded by PCT as a first or second line treatment as its too costly and hasn't shown to be any better than others (only been out two years!!)
ATM we are ok because dh starte these drugs before the guidelines came in, but we have plans to move.
Within the area we are moving to, dh will be a new patient to the local pct. Does anyone know if they can refuse to fund dh treatment in new area? Is there anyway to find out?? Our whole move depends on this, and we are moving to provide better lifestyle for our two SN girls. I don't want to have to choose who gets best care, based on funding :(
Help

Really hoping someone on mn knows

Is the drug prescribed an monitored by the hospital or the GP?

Some treatments are totally handled by Secondary care (the hospitals) and if this is your DH then would you still be under the same hospital and consultant when you move?

All his chemo has to be given by our local hospital. He is under another London hospital as they are specialist in his rare cancer but all treatment is local. We couldn't stay at same hospital as plans are to move about 3 hours away.

Do you absolutely have to move? This sort of situation does cause huge difficulties and unless it is impossible not to move I would prioritize your DH treatment for the moment.

We don't have to move but have reassessed our life's as it is right now an feel we need I make some changes. We hate where we live, it's too close to London, too busy, dh hates his job and the special needs services are really poor here. If dh treatment was short term we would wait it out but his chemo will need to continue for foreseeable future.
I can't find any guidelines about it

Lisa in all honesty I would proceed very, very carefully. Many PCTs are in dire financial straits atm and will NOT fund anything they can get away with. You could try contacting the PCT and asking if they will pay for it at whatever local hospital you would use. If you get any assurance at all get it in writing!

Thanks, we have appointment with his specialist in two weeks and hopefully he will know which hospital deals with it.
Is pct decided by where you live or which hospital you are under? We could travel back if needed.

I don't have any idea Lisad123 but just wanted to say I feel really and for you and your dh! It really should not come to this but I can only echo what Northernlurker said, that PCT's as well as other NHs providers are really cash strappped at the moment and cut backs are swingeing in all areas.

I hope it all works out for you, your dh and your dc's

without getting too complex, this is the long and short of the NICE guidelines:

Dasatinib (dh current treatment) , high-dose imatinib (which didnt work) and nilotinib are not recommended for the treatment of chronic myeloid leukaemia that is resistant to standard-dose imatinib (which is what happened to dh)

1.2 People who are currently receiving dasatinib (dh does), high-dose imatinib or nilotinib for the treatment of chronic myeloid leukaemia that is resistant to standard-dose imatinib should have the option to continue treatment until they and their clinicians consider it appropriate to stop.does this sound hopeful??

We are aware that his treatment is costly, but there is no bone marrow match for him, and his still very young compared to most with this type of cancer. He was also very unlucky to develop resistance to a drug that worked for 90% of patients. :(

Yes 1.2 does sound hopeful because he will still be under the same onologist won't he - so the clinicians opinion will remain constant. Don't assume anything though - check and get it in writing! The PCT that covers the majority of our hospital activity is currently refusing (or trying to) developments which will without doubt save them money. There is very little logic to anything they are deciding.

no he would have to change onologist

Well make sure the oncologist appreciates the importance of this issue before care if transferred. Sorry misunderstood - thought he was staying under the London specialist but would be changing treatment centre.

i might call local specialist at area we are loooking to move to, and see what they say. I cant believe we have to worry about this sort of thing :( really is a terrible state of affairs :(
Dh doesnt want to stay under London specialist if he doesnt have to, and all treatment decisions are normally made by local team. He was only transferred to london after 1st line treatment failed and they werent sure if it was a mutation or resistance so needed specialist.

Ok in this case it won't matter about what the PCT prefers. If there is a consultants specialist recommendation (as you currently have) then the nice guideline clearly supports the continuing prescription of this drug. The key will be the oncologist he is being referred to.
Speak to his current consultant and ask them what their discharge recommendations would be to the new consultant. You can ask them to get in touch with the new consultant and give you some idea as to how receptive they will be to a direct transfer of plan.
If they work on different protocols ensure your current consultant explains what these would be including degree of symptom control side effects etc.
The long and short is that this treatment doesn't have to stop just because you are moving but you probably need to feel much more comfortable about the care and services you are moving to. You need to know you're gonna have the sane confidence and approachability in the new consultant too. You will get to know them pretty well after all.
IME most oncologists are very patient driven and tend to work the guidelines as far as possible to get the best treatment for their patients
Good luck

I think PIMS is wrong. It is a NICE guideline not a TAG, that means the PCT will not have to fund it. If you move, your new PCT will be determined by where your new GP is. It is very unlikely you would be able to keep your existing GP if you move that far away. Even if you moved and kept the LOndon oncologist it is possible (although reasonably unlikely) that the treatment could stop being prescribed.

I agree with Northernlurker (and I know we both work for the NHS) and would proceed with extreme caution. PCTs are the same as all areas of the NHS and are having massive cuts made, don't believe the Lansley hype about efficiency.

Sorry.

But we won't know who GP will be until we move!! So it doesnt matter if hospital specialist agrees in new area then?
We can't afford to risk moving and then fighting for dh treatment, we have enough fighting for the girls, I'm nearly spent as it is
I can't believe that NICE can put a price on the life of a 35 year old man with 2 young children and a wife

The first thing you need is for the new specialist to agree with the current one about the drug regime required. Then you need to identify the PCT concerned and get them to confirm they will fund it for a patient moving in to the area. If for example the new specialist can tell you that they are already treating patients with the drug that would be very hopeful. I'm sorry Lisa - I know this seems overwhelming but this is how it is now. Bottom line is your dh is using a drug that any PCT can argue they don't have to fund because it is not the drug of choice for his condition. Regardless of the fact that it is the drug of choice for him! It's working for him but NICE affirm there isn't enough evidence to recommend it widely and PCTS will I'm afraid always consider the balance sheet and the precedent set before anything else.

im just so angry, and upsetof course. He started this treatment before the NICE new guidelines came out :(
The thing is, its so new, they arent likely to have enough evidence to support it.

according to another forum people have said "The NICE guidlines are not legal just yet. We have an appeal to get through first"

and
"when I moved PCT the new one accepted the drugs I was on as OK. Perhaps one way is to stay as a Hammersmith patient and do sharecare with the local hospital in Dorset? I did this for 3 years between Bath and Kings in London and it worked well. Kings were very very capable of taking on the westcountry PCT !!!!"

I reckon staying with your existing oncologist is certainly one way to go - but that shouldn't be necessary in a reasonable world! You can't go on other people's experience though. THe PCT can and will do different things for different patients What you need is dialogue both with a local oncologist and the PCT - commissioning manager or similar for oncology.

thanks northern, dh has appointment with his doc in 3 weeks, so will see if he knows anything. Will also ring local hospital (he will be under bournemouth) later in the week and see what they suggest. WIll conversation with doc be enough or do i need to call funding manager?
We really want to do this move and hate that it comes down to funding.

YOu could try ringing the hospital PALS and see if they can find out for you. In the hospital I work in, were we to get this sort of query, the business managers would get the message from PALS, contact the PCT and then wait for some time whilst the commissioning managers bat it back and forth - but our PCT is especially under financial pressure so things do take a while to get through. PALS are supposed to advocate for you so they should be able to help. Whatever they come back with GET IT IN WRITING!

Thanks for all help. Have asked PALS to look into it but she didn't know if she will be able to find answer.

Hope she does manage it.