Major rant and advice please...

[zazen999]

Publicity and Facebook; Vic Derbyshire is pretty good at picking up these sorts of campaigns and getting publicity to name and shame - she is on my chums listing so personally I'd kick up a stink and link her into it.

[Patchninja]

What a dilemma. I'd make a fuss too. Big hugs to you and your family.

[maytreefrannie]

Sorry to hear your dilemma - best wishes to your sister and you all.

I'll be in if there's fundraising set up here.

[TonyF]

Perhaps I may be permitted to add my twopence worth here because I've been in the same position regarding expensive drugs.

I was prescribed a drug that wasn't approved (pre-NICE days) or licenced for my type of leukaemia and it cost £70 per day x 5 per week x 52 weeks made it £19,500 a year. There was, to put it mildly, a heated debate between my oncologist and my Health Authority (as was) but in the end, the specialist won out. There is a huge body of background material on the use of non-certified or approved drugs being used for people with cancers and it's nothing new so what they're trying is just a smoke screen.

And I was on that for 7 years without a break tho the dose was reduced to 3 times a week and the price eventually dropped.

I really understand people wanting to contribute towards the cost but please, don't do it. Many PHCTs will say that if you have paid for the treatment yourself you are, effectively, having private health care, which your sister would be because she is paying for it and many PHCTs will not then fund the drug and some have been known to refuse to provide oncology care because you cannot mix and match NHS and private treatment for cancer, trust me on this, I've been campaigning about it for years.

And whilst I have huge sympathy for the cause - been there, done that - you would be much better advised to start a campaign locally to your sister and her family, fund raising as suggested here may well be illegal through this web site and I'm sure that the publishers would have a view on it happening through this site. And if it were permitted once, what would happen next time somebody had a problem of this magnitude, would we need a parallel site for worthy causes?

I would go for the publicity point of view, articles in the local paper, try to get an interview on your local television programmes, especially if your sister is under retirement age and has children, you need to seriously embarrass the PHCT into rolling over on this.

I'm sorry to sound so negative on people giving financial help and completely understand that is a natural reaction to want to help but giving money and buying the drugs direct could be a major retrograde step.

[OverWyreGrower]

Thanks everyone...

We're still deciding on whether to do publicity for this. My sister is currently at the hospital for her chemo and seeing her consultant to talk about her options.

Part of the problem with the money is that to the NHS, the cost is only £3k, however, if we want to pay, we have to pay the full whack as if we were going private, which is £18k (room hire, staff hire and drug cost). The treatment is a one-off, week's worth of treatment (which can only be undertaken once in any case due to the nature of it).

Anyway, now my mum and sister have calmed down a bit from last week, I suspect we'll be able to have more civilised discussions about it and what her options are for the future.

[bobleponge]

Only just read this post Shelley, my deepest sympathies to you in what must be a terrible situation.
I would go the publicity route as well, and whilst I understand Tony's point re private health, it is only natural to want to help.
Best of luck to your sister and the family.

[annacruachan]

What a dreadful situation OWG; I do feel for you all. It makes my blood boil that financial concerns take precedence over someone's life. It's not what the NHS was created to be.

I would badger your MP AND go to press with the story of his appalling attitude.

Local fundraising would seem to be the way to go if it's unlawful on this forum, but if it's not count me in.

[maytreefrannie]

Thinking of your sister and you all, OWG, as I'm sure all other grapes are too.

Hope you get a good outcome.

[OverWyreGrower]

Publicity!

My sister made the front page of the Lancashire Evening Post today!
£3,000 - The price of a life

[Patchninja]

What a marvelous article. I really hope it helps her get the treatment she needs. Will have everything crossed for her.

[maytreefrannie]

I've Just read the article, I think the publicity is a good idea and hope that the situation is addressed and sorted soon.

Good wishes to you all.

[quark1]

Dear OWG

Glad to see the campaign advancing.

Wish you and family every success however you get there.

Just one word of warning.....PCTs have, in the past - and probably the future - refused NHS continuation of care for those who have either opted for experimental treatments or paid for short courses of vital drugs privately whilst they drag their feet. Would advise that you get their undertaking IN WRITING that NHS provision of treament will not be withdrawn should you be able to raise funds privately for the treatment. Perhaps the embarassment of exposure will do the trick anyway?

It goes without saying that I wish your sister a speedy recovery from this awful situation she finds herself in again. I'm sure she has much love and support from her family and the external family of places like this.

My sincere good wishes for the future.

[Hilary B]

Make a fuss, ask the company that produces the stuff (if they decide to give it free subject to the PCT providing the auxilliary care, you could be onto a winner, and the drug company get their test results AND publicity as nice folk!) and DEFINITELY get the MP a touch of embarrassment over being 'too busy' for this!

[dexterdoglancashire]

Shelleys sister was in the Daily Express today:
www.express.co.uk-posts-view-173208. I hope the publicity helps. (I've sent you a pm Shelley).
If the link above doesn't work, go to the home page and type in Heather Parkinson, that will take you to the article.

[OverWyreGrower]

And the Telegraph:
Cancer sufferer refused treatment trial in NHS 'postcode lottery' - Telegraph

She was also interviewed on BBC North West Tonight and ITV Granada Reports tonight too.

We have a FB Group - Heathers Lymphoma Treatment and are going to try and get the TV interviews up on there for people not in the Lancashire area...