Co payment

well it looks like another U turn the BBC have just telephoned re an interview, they are expecting an announcement. As some of you will know I wanted to co pay for avastin and then the NHS told me if I paid for avastin I was going to be charged for all NHS treatment therefore making it totally unaffordable. Ian and I spent a fair bit of time fighting NICE and going to Westminster to fight for the right to co pay.
I had a piece published in Reform this month so I am glad that Ian and I did not just give up.

Love Debsxxx

I hope so Debs - I am with you on this one Ideally no one would have to pay for drugs that are available in USA or Europe, but to then to take away NHS treatment if you dare to want to live longer - well thats just outrageous. I have a meeting on November 14th with my MP, if its all done by then I will turn it into a meeting about my local post office which has mysteriously closed.

Hope you are doing ok on the taxol. Off tomorrow for mine.
Cathyx

Hi i had avastin and it stopped working for me after 6 months. (Free at clatterbridge) But everyone is different .Keep fighting for it to be free, or go to another hospital.

sophie

bump

3.25 pm – Info from BBC News 24: there will be a Government announcement about co-payment within the next hour.

Marilyn x

Well he has made his announcement and I for am relieved no longer will patients be chucked out of the NHS. Once we can get NICE working faster drugs that are not available now soon will be.

Love Desbxxx

For info, here’s a summary of the Government’s announcement from the Department of Health website - dh.gov.uk/en/News/Recentstories/DH_089999:

"More drugs are to be made available to NHS patients, particularly for those facing a terminal illness, announces Health Secretary Alan Johnson. A landmark report, published by National Cancer Director Professor Mike Richards, Improving access to medicines for NHS patients, recommends a package of measures to substantially widen access to drugs on the NHS and reduce the need for patients to resort to private treatment. The Health Secretary also announced that, from today, the NHS should not withdraw treatment from the few patients who may still choose to pay privately for additional drugs. But he made clear that while private care can be carried out alongside NHS care, private treatment should take place in a private facility and must not be subsidised by the NHS.

New proposals by NICE (the National Institute for Health and Clinical Excellence) also published today, set out a new system for appraising expensive drugs designed to help those with severe illness. At the same time, NICE will work with the Department to speed up the appraisal process, so that patients have faster and more consistent access to new therapies.

The package of measures includes:
– supporting NICE’s proposal for greater flexibility in appraising more expensive drugs for terminally ill patients
– working closely with the pharmaceutical industry to agree new and more flexible pricing arrangements to increase access to new drugs - these will include lower initial prices, with the option of higher prices if value is proven at a later date, and patient access schemes
– speeding up the NICE appraisal process for new drugs so that they become available to patients more quickly
– improving quality and consistency of local decisions by setting out core principles to guide primary care trusts on the funding of new drugs, where there is no NICE guidance in place
– publishing today a consultation on revised guidance for trusts for those rare cases where patients purchase additional private care.

Alan Johnson said: ‘The measures I have set out, together with the improvements proposed by NICE, mean that a greater range of more expensive therapies will be available to more patients on the NHS - reducing the need for them to seek private care. A small number of patients may still choose to pay for additional drugs not available on the NHS. But I have agreed that, from today, NHS care must never be withdrawn in these cases - as long as private treatment takes place in a private facility. This issue was causing distress to patients and their relatives – and none of us wanted that uncertainty and inconsistency to continue. Patients and the public can be confident that from today there will be greater clarity, greater fairness and, most importantly, greater access to a wider range of drugs.’

Today’s measures build on the principles already enshrined in the NHS Constitution – which include the right of all NHS patients to access NICE approved drugs or treatments if their doctor recommends them as clinically appropriate."

And you can access Mike Richards’ full report - Improving access to medicines for NHS patients: a report for the Secretary of State for Health by Professor Mike Richards - on that webpage.

And yes, Debs – the key will be NICE becoming faster & more co-ordinated – hope it happens soon for all of us.

Marilyn x

Well done Debs, I see this as the first step to getting better access to drugs, They imposed the co pay ban very recently only to back up the fact that NO ONE could have access to these drugs, now they are admitting it is important and it will definitely put real pressure on NICE. In many ways I see this as effecting other cancer patients more as the drugs involved for them are even better. (that is just my personal view) .

cathyx

This all sounds like a good way forward to me. Negotiation with the pharma companies over pricing and review of NICE procedures. I am glad to see the NHS trying to stick to its principles but also to move with the times.

Thanks Queenie…

Jenny

Well done Debs - thanks to brave women like you many people will be eased the pain of NHS treatment being withdrawn. Hopefully the rest of the recommendations will be acted on!

Geraldine

Debs. Just got a copy of the prof Richards report from Mr Cameron’s office. I challenged him, at a meeting, a few months ago on this issue. Its good news. Like you I am giving rqdio and TV interviews so I am keeping the flag flying in the north. Hope you are keeping wel. I see ONC tomorrow and will get too kow my fate. Progression intervals are getting shorter which is very worrying. Will post again soon and let you knonw what happens. Love to you
Colette

Hi Colette
good luck with onc hope all goes well. I am back on taxol 2nd shot Friday.

A funny thing happened on the way to the studio.

Radio Cornwall rang very efficient presenter would I be available between 1 and 2pm. I said yes fine. This could only happen in Cornwall a new pole dancing club has opened and locals are outraged. My interview was put back an hour such is the life of a wanabe!

Love Debsxxx

Fancy being upstaged by a pole dancing club!!!News frm ONC is not good, brain tumour has started growing again and he is refering me to see a neuro surgeon. Seeing liver sec in 2 weeks and hopefully he will do ablation. Feeling down again. Why is our lives so sh***y, we are always up or down, there does not appear to be any middle ground. Good luck with taxol
Love Mills xx

So very sorry to hear your s…t news there was a thread not too long ago on gamma knife hope others soon come along with advice good luck with the liver ablation. Could you not go down the German route it has worked well for Spike.
Keep us posted.

Love Debsxxx

Hi Mills,
Just wanted to say I’m sorry to hear about your brain tumour. Really hoping they can do something swift and effective for you, and sort out that liver too.
Hugs
Jacquie x

Thnaks Jacqui I have my fingers and toes crossed. Its the waiting that gets me down
Mills xx

Hi Debs

I am really chuffed about this, however it doesn’t include Scotland but i am sure theyw ill now follow.

Diane