Panorama / Herceptin

Panorama / Herceptin

Panorama / Herceptin Dear all,

Does anyone know anything about the timing of the Panorama programme on Herceptin? I’d thought it was due on Sunday (29th) but the Panorama web-site says there the programme this week is on VAT!

On another subject - I’d already mentioned in other threads that our costings for Herceptin came in £10,000 cheaper at private hospital than NHS. I’ve realised since that the private hospital is part of the Nuffield charitable trust which is supposed to be non-profitmaking. Makes sense as drugs cost £17,000 (Juliet is 52.5 kg) and total cost is £20,000. Has anyone else used these hospitals? If costing reasonable in other ones perhaps this is a good option for self funders?

Have a good weekend!

Sharon

Panorama/Herceptin/Costs I’ ve been told by a BBC reporter (a couple of weeks ago) that a panorama programme was scheduled for sunday (he thought it was a “good” time to air as ? Swindon case goes to court shortly after (?? 6th feb was the date I’ve been told)but like you I’ve been told another topic is planned (the BBC Panorama website now lists a work/life balance prog) .

I did email the programme trying to get more info, but never received a reply.

The costs you have been quoted for Herceptin sound very good to me - £20,000 of which £17,000 is the drug leaving £3,000 for the costs associated with 18 infusions (nursing time, iv fluids, giving sets etc…) . Each infusion will be given over 90 mins . After the first (and ?? 2nd) infusion Juliet will need to be kept in for observation for several hours after the dose.

Have you made any progress with your PCT? Went to my appeal yesterday - an “interesting” experience - not holding my breath for a positive outcome - the local “postion statement” says no to anyone pre NICE guidance.

Just heard… —Its on next Sunday, the 5th Feb.

— Thanks bothl! Let’s hope the programme doesn’t get ‘bumped’ again. Last week’s programme changed more than once.

I agree that £20000 is pretty good - and hope that others find Nuffield hospitals helpful for them. Juliet has first treatment tomorrow - can’t come soon enough for me - but easy for me to say. Juliet dreading the cannula …veins not so good anymore. We are both aware how lucky we are for her to be able to get herceptin though - so neither of us are really complaining (though I’ll be glad to get any threat of allergic reaction out of way) Slp - we haven’t got much further with appeal to pct. Written letter to mp - but very recently. PCT meeting in February - but I would be amazed if they agreed to paying for herceptin at that point, given their indebtedness. Does anyone have any recent information on when NICE likely to make a decision? I’d thought July, but have recently read either May or September.

Hope that you get a favourable decision from your pct - Slp!

All the best,

Sharon

NICE decision (and a not so nice PCT) NIce website suggests they are planning to issue guidance in October 2006 - OK so perhaps I’m a bit of a cynic but I think this is rather optimistic as the 1st meeting is scheduled for late August.

I was talking to CancerBACUP recently and they suggested that the process at this point hadn’t even started (submission by all parties have to be with them by mid march) - problem getting Consultants was the suggestion (ones that had no link with Roche - and by this I assume they hadn’t participated in HERA or accepted “sponsership” to go to conferences etc.)

My PCT turned me down - whole affair was a farce (see my post - postcode prescribing is alive and well) - Now just busy making a nuisance of myself trying to find the right way to apply the required pressure to get the basic “position” of the trust changed.

Good luck to Juliet for tomorrow - Herceptin isn’t awful to veins like epirubicin etc. (do understand her concerns - I “used up” a fair number of veins during my assorted treatments and certainly am a “cannulation challenge”)

Bummer! Hello Slp,

I’m really sorry to hear about your pct decision - I hadn’t realised. It is such a pain to have to be fighting for this - just an added worry. Disappointed to hear about NICE timelines too - I had hoped we might only have to pay for a few months and then go back to NHS.

Thanks for comments about veins - I’ll pass them on.

Got to run now - but best wishes and good luck to you!

Sharon

Hi All Just had a quick look at my tv mag…says Herceptin debate on this Sunday night at 10.15

See you all there

morag

What did you think of Panorama? I thought some of it was powerful, but did get the feeling it looked from the purse string pullers point of views that we are just following the latest cancer fashion at the risk of the health service in general for a very slim chance at improvement in survival.

Apparently only 1 in 18 of us will benefit from the drug acording to the programme, but it was a chance I wanted not a guarantee.

I’m happy, I hope the case tomorrow has a great outcome which will aid other women across the country in getting H too.

Goodnight all!

Totally agree Steph Felt the emphasis on only 1 in 18 benefiting and therefore each benefiting patient cost 300,000 was very misleading and if anyone followed the debate on News24 afterwards they will know that this info was challenged.

Bottom line is that if no extra funding is provided for any of these new, expensive treatments then something will always have to suffer.

Somehow I thought that my NI going up by 1% was supposed to go towards ensuring that we have more funds for usage of this type in NHS but that does not seem to be the case, instead the extra money seems to have disappeared down a black hole.

Now I may be an old cynic but I am wondering if the extra 1% has been “syphoned off” for other expenses, rather like the 48bn which is gathered each year by the treasurary from all the motorists in terms of car tax and fuel duty and which is supposed to go towards helping provide an “integrated” travel system but where in actual fact only 6 bn is spent on maintaining/improving our roads.

Money Or rather lack of it, thats what it comes down to. It’s wrong of Patricia Hewitt to say that it can be given, then not providing the funds to do it.
Having read in the papers that hospitals are having to close wards because they’re in debt how can PCT’s pay for extra treatment?

At one stage they seemed to try and make ‘Herceptin-Seekers’ feel guilty, as the cost of one of their treatment would benefit more patients to have different treatments.

As you say, Challsi, where has our 1% extra gone? Probably paying for works of art to decorate the grounds!

Two threads There are two threads running on this important topic.

Any chance of putting them together moderator??

Jane

Hi Jane Thank you for pointing this out. I have posted in ‘Undergoing treatment’, where the other Herceptin/Panorama thread is running, to point out the fact that there is a similar thread in here. I will leave the threads seperate as they were started by different people. Hope this is helpful and that users will check both threads to add their points of view if they wish to.
BCC Host

Panorama Just watched my tape of last night’s Panorama.

At the hospital today I was told that I would get the HER2 test and (as I understood it) that if I needed Herceptin I would get it .

However it is the same PCT which is closing the local hospital here which is currently creating huge protests in the town.

Don’t know how that reconciles.

Linda

Cost If Herceptin saves lives, which it obviously does, why does no economist work out how much money it potentally saves rather than how much it costs. The costs of women dying is difficult to measure but just think of some of the possibilities. Children who lose their mother may well result in a father or other adult having to give up work and live on state benefits, whether for a few months or for years; the effects on the children can result in more resources needed in schools to support them. The trauma of bereavement can obviously affect the academic achievement and career potential of children. Grief can really mess children up and the consequences of that may have to be suffered by society as a whole. Sorry if this is negative but any money which saves a child losing a parent must be money well spent.
best wishes
Kelley

Kelley After my first email to Patricia Hewitt on Herceptin was answered with a standard, rather insulting blurb, I sent a second, much more ‘choicely worded’ email to her outlining the potential costs to the state if my two children and husband had to rely on benefits if I die. Also included the costs of further surgery, chemos and paliative care.

The first year of state benefits would cover the cost of a year of Herceptin, so it’s clear to see how much of a potential saving would be made I were to stay well and also able to contribute.

I’m glad you bought this up, as there was no balance of this mentioned on Panorama, but that was never the intended angle was it. I call it the bigger picture, helpful in most situations!

It shouldnt matter whether we are young with kids, or older without dependents, if death is avoidable in any way that should be sufficient reason.

Steph x