AIBU to expect that the PCT fund the medication that Steves oncologist has said he needs?

[onlyjoking9329]

having joined the macmillan brain tumour online group i have found someone who lives near me who's husband has the same type/grade of brain tumour as steve,he also has the same consultant. her husband was told he would need radio combined with a chemo drug temozolomide which is exactly the same treatment steve has been told.
she then goes on to say that the local PCT won't fund it and it costs 15K
i am having a little panic here and trying to make contact with this lady to see what happened to her DH treatment, surely the oncologist can't tell us one thing and the PCT refuse to fund it, anyone know anything about this?

Sadly, they can, but you can go to a panel that looks at exceptional cases. If it does come to that (and I hope it doesn't), then get yourself some VIPs - your MP, a lawyer, etc. etc.

Look up the NICE guidelines - the body that recommends which drugs the NHS should use - and see if they say anything about this drug.

here

I don't have any info but at the thought of it not being funded!

Btw, if NICE hasn't yet ruled on that drug, it does NOT mean the PCT doesn't have to fund it - health ministers and NICE bosses have made that clear. PCTs try to use it as an excuse but they know perfectly well they are wrong to do so.

Also, does this lady live in the same PCT area as you - not always the case even if she is nearby.

have had a look on the NICE site and to be honest i don't really understand what they are saying, anyone care to translate?
i am assuming she has the same PCT as they live nearby and have the same consultant.

Even though people can be seen by the same cons. this lady and her husband are likely to reside within the boundaries of a different primary care trust hence the decision not to fund. Its very much a postcode lottery. It is also the case that some treatments in Scotland are not available in England due to such issues.

I would have thought the oncologist is fighting tooth and nail to get this drug treatment funded for them.

onlyjoking, try this guidance here guidance.nice.org.uk/TA121/publicinfo/pdf/English, it's the version for patients, and shuld be a bit more understandable than the versions for oncologists. If your dh meets the criteria then he should have his treatment funded, no questions asked (in fact PCTs/hospitals are required to fund). However I note that this guidance was only published in June 2007, and the previous guidance was much more restrictive (could only be used if a previous type of chemo had been used and it failed). Is it possible that the other person tried to get temozolomide a few months ago maybe? Pre NICE, for expensive or unusual treatments the consultant would have been asking the PCT for funding, and they would have looked at it on a case by case basis (this is usually known as exceptional treatment funding).

Essentially the criteria now is:
Temozolomide is recommended as a possible treatment for people with newly diagnosed glioblastoma multiforme (a type of high-grade
glioma) who have a World Health Organization (WHO) performance status of 0 (they are able to carry out all normal activity without
restriction) or 1 (they are restricted in strenuous activity but are able to move around and carry out light work).

Hope that's helpful!

Shit!

We had the same thing. PCT would fund the Gemcytabine, but not the capacytabine. In the end the RAF stepped in and paid.

God, don't know what to sugest

that is useful nooka we can only hope that things have changed then i guess.

it is crap thou MB they told us this form of chemo was the best, so it would be shitty if they decide not to fund it
anyone got experience of battling with the PCT?

I haven't battled with a PCT, but I do work for one. You may find some useful stuff on their website if you think you may have to fight this battle. They should have information on their Exceptional Treatment arrangements on their website, if not you could ring them up and ask for information. Basically PCTs cannot refuse any treatment on a blanket basis, so they have to have a process for exceptions (this is a lefgal requirement). So for example most PCTs will not routinely fund expensive or new drugs that haven't been given NICE approval (otherwise they would fast run out of money). But an argument can always be made that your case is exceptional. This will be heard by a panel of people, including public health specialists (who can read and interpret) research, commissioners, and usually a lay person. Mostly the argument to be made is clinical, about why the treatment is worth trying. Sometimes a case may be made on social grounds (for example if there are dependants) or on mental health grounds (occasionaly plstic surgery may be justified on the grounds of severe depression or body image problems for example). Of course this does lead to some variation, as it is people based, and so subjective (hence postcode prescribing). This is one of the reasons why NICE was introduced. If NICE have approved a treatement with a technology appraisal then the health body has to make arrangements to provide it within three months (this is a statutory duty). In my area the hospitals get an uplift every year to pay for NICE so the PCT is not involved. The person who will know all about what your husband can or can't be prescribed is the consultant (the really specialist ones tend to be very up to speed with NICE). If he is confident I really wouldn't worry too much.

Thanks Nooka, it all sounds very complex.
the stuff i have read says that this chemo drug is usually used after radiotherapy when the tumour regrows, the consultant is saying steve needs this drug alongside the radiotherapy to buy him some time, the drug will not be a cure. maybe that is where the problem is.
thankyou for your time on this it is a learning curve that we didn't expect.

Hi hon crap situation sorry - am medic had quick whizz through NICE (not a user friendly site surprise surprise) - what nooka has typed is the upshot so looks like if his consultant has recommended it they will HAVE to fund it - don't let them get away with it print out the guidance for patients and take it to their offices!

PCT = primary care trust

Primary Care (HAHA) Trust

the other ladys DH was in the same situation but by the sounds of thing they refused to fund them.

PCT= Prmary Care Trust

They are basically where the local hospital/GP and 'primary' health providors get their money from.

Therefore they have standards of care to reach and money allocated by the government to achieve those things. There is aconstant battle between the best for this and that patient in terms of care, hence the postcode lottery as it is called.

Some trusts will fund IVF for example, some will not.

Some will pay for certain drugs, others will not.

TBH if you look at it in objective terms, and I am trying not offend the OP. The PCT's try (however badly) to put into place guidelines that will help the most people. Therefore if they spend £15k on one drug for one person, would that money be better spent on 4 hip replacements, or 10 prem babies or whatever.

THERE IS NOT ENOUGH MONEY TO DO EVERYTHING

That is fact, it is not particularly the governments fault either as we as population resent paying taxes so it is a fine line. Also over teh years treatment and drugs are getting better, but at what cost??? The NHS is not a bottomless pit and who s to say one person is more needy than another.

IMHO IVF shouldn't be funded at all, BUT that is my personal opinion and try saying that to some of your here. I feel teh mney should better be spent on poepl like the husband of the OP. However others may think differently. I was always grateful that there was money to save my DD who was premature, but isthat that best use of teh budget??? Who knows??

,y understanding is that then govern the spending on drugs for the NHS so its up to them if you get a drug or not, bit of a postcode lottery as to if you get the drugs or not, i think, thou i have had a few drinks so i could be well wrong

their might be exceptions but it seems it might be a battle first.

Back in the olden days, before the millennium, GP prescribing budgets were 'uncapped'; so there was no financial limit on what doctors could prescribe. Current government changed that.

Onlyjoking, I don't think you will have to worry about this, Nooka and Macdoodle have said the NICE guidance has been updated and now covers this drug in the situation you describe, so PCT have to fund it. But worth printing out the guidance (there's a link earlier in the thread) just in case anyone at the PCT hasn't caught up.