Are we stuck with a new kind of Postcode Lottery?……..

I was lucky enough to go to the House of Commons last night to a Cancer Research UK reception as a representative of the James Whale Fund for Kidney Cancer.

I had high expectations about the meeting given the new announcements about NICE being stripped of its powers and the Cancer Drug Fund, however it was probably unfair of me to have set those expectations. The evening was a culmination of a whole days effort that CRUK had put in meeting MPs with their key 70 or so ambassadors (volunteers). So for them it had been a hard day of lobbying.

The reception was 2 hours long and more of an opportunity to grab a quick drink and network. There were some short speeches to reiterate the work CRUK is focused on. Their focus is on research and early screening and to that end they spend around £350m each year, and I’m glad for that!

I managed to corner Harpal Kumar (CEO of CRUK) and I asked him what his views were on the new announcements. His views seem to echo many of ours (and without quoting him directly) he felt that now that we are moving to a more localised value based system the postcode lottery could potentially worsen and we need to keep a strong eye on it to ensure that there is full transparency. One way to measure this would be to maybe have direct comparisons for each SHA area, so for example, it would be easy to see if an SHA was failing if the outcomes for a Kidney Cancer patient were worse than another area.

At the moment, this is still all hypothetical, because the Government is yet to consult on its plans for a value based system. However, I still think we’re stuck with this whole Qualy nonsense whatever happens, it’s all “Value Based” to me. I’ve always wanted to see the real calculations behind Qualy but have only ever been told in the most patronising fashion “It’s too complicated for the likes of you”. Well if it is or isn’t I’d like transparency around it and be able to have public access to it.

I worry; the whole “Lets put the power into the hands of the local people” isn’t solving anything as far as I can see and may well make it worse. It also gives the government the opportunity to potentially wash their hands of it saying “it’s down to each local area to manage its own budget and we’ve given all we can with the new cancer fund”. OK, so this is just my own personal view and I could be being overly pessimistic.

Suffice to say I believe that the battle with the Postcode lottery and access to new Cancer Drugs is far from over. The sooner the authorities wake up to the fact that beyond surgery there is NO CURE for Kidney Cancer and the new drugs are the only available treatment. Drugs that not only extend life but also give quality of life. If it’s good enough for other countries such as the USA and other parts of Europe then why not the UK? Sorry Mr Cameron but if you can afford to have a personal photographer paid for out of tax payers money then methinks priorities are still a bit of a mess.

The evening was fantastic and thank you to CRUK for letting me come along.

A slight aside.  It was of some comfort to me that the work CRUK does is complementary rather than overlapping with the work the James Whale Fund for Kidney Cancer does. To me they offer different services to the patient. This is a good thing as one of the thoughts I have struggled with in the past is why we have so many different cancer charities all seemingly doing the same thing and all after the same funds. Well, there is a differentiation in what they all provide e.g. direct patient support, palliative care, lobbying, awareness raising, research etc etc i.e. there is room for everyone as long as we stay focused on our core strengths and missions. Also, whilst CRUK is clearly a strong lobbying body and can exert enormous pressure when required it’s important to have multiple organisations lobbying for the needs of patients with different cancers as well (attacking from all sides for want of a better way of expressing it).

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Posted under Andy Thomas, General

This post was written by AndyThomas on November 4, 2010

N.I.C.E. To be stripped of its powers

Today has seen the long awaited decision to strip N.I.C.E. of its powers that enabled it to ban the use of much needed drugs. For the Kidney Cancer community this can’t come soon enough. For years now we’ve been fighting for our rights for new cancer drugs and treatments, for many this decision has come too late but nevertheless we’re grateful that common sense and decency have prevailed.

I have my concerns though.  Yes I’m delighted that this quango has had this controversial powers removed and it’s been downgraded to an organisation that will help write guidelines, but what does this really mean?

N.I.C.E. was only ever supposed to be group that offered guidance anyway, and why is it going to take until 2014 to action this? Surely that should be instant.

Also, are we moving into an even more ill defined postcode lottery? Who will really decide what drugs are going to be made available to you as a patient? The doctors, PCTs, some “to be defined” local committee? I’ve seen little clarity on this as yet and I worry that we could be entering into an even worse era.

It’s great to see N.I.C.E stripped like this, but let’s not take our eye off the ball. I’m going to the house of commons on Wednesday this week and I’ll be interested to hear other people’s views on this. I’ll report back.

Posted under Andy Thomas, N.I.C.E.

This post was written by AndyThomas on November 1, 2010