Spend on cancer per patient in England 2006 - 2007

£6,833

Compare this with other PCTs: highest amount spent was £17,028, lowest was £5,182, and average PCT spend per cancer patient was £8,437.

Exceptional funding for cancer treatment

The following information was requested from the PCT under the Freedom of Information Act.

Written protocols
The PCT does not have a separate protocol for cancer treatments. These are encompassed within the PCT's Interventions Not Normally Funded (INNF) list.

Cancer treatments funded/not funded by PCT following exceptional requests

The PCT was asked to list all the cancer treatments funded/not funded since 01 October 2006.  The PCT's Information Governance Officer replied: "Without being given specific names of drugs we are unable to provide the information".

A patient's experience

03 November 2008 - Robert Derrick shared his experience with us. Robert is aged 66 years - a family man with four daughters and seven grandchildren. He has worked hard all his life and is still running a small business paying VAT, Corporation Tax etc. Here is his history in his own words.  We will keep you updated on Robert's experience as further events unfold.

History

"Small spot on the side of knee in March of last year diagnosed as secondary bone cancer, primary cancer then found in kidney. Nephrectomy first then referred to Specialist Bone Cancer Unit in Birmingham who removed knee and part of femur, replaced with titanium which enables me to lead a relatively active life.

In June of this year was diagnosed with advanced kidney cancer (metastases on both lungs which is inoperable), but I am still feeling fit and well. Still able to work and live a normal life. Have been told by the consultant that Sutent should keep me on the status quo for the foreseeable future. (Undetermined length although we have been told that some have been on this drug for 5 years).

After intervention by Steve Webb MP Glos PCT agreed that I could make an application for funding.

Have just been turned down for the drug SUTENT by Glos PCT

Not allowed to have a representative at the meeting, (infact not even told when the meeting was to be held, but the MP Steve Webb has informed us) When we questioned them they told us it was an informal meeting behind closed doors.  They hadn't seen me and was turned down 'unable to find any circumstances that demonstrated an exceptional capacity to benefit which may warrant funding'.

Euthanasia is illegal in this country but Glos PCT and others like them are saying we are not cost effective and are basically leaving us patients with advanced kidney cancer to die a premature death.

Some PCTs give this to all patients that need it - post code lottery.

The first month is given free to all patients by the drug company (Pfizer).

Thereafter the cost of the drug is £3,703.10 per four week cycle (4 weeks on the drug then two weeks break), plus the use of the Hospital facilities, plus Consultants Fees/scans etc.

Have now taken the drug for 2½  months, the side effects are minimal and I am still able to lead a normal life. However, the diagnosis itself is very hard to come to terms with, then you have to fight this campaign for funding when you are at a very low ebb. Without family around us to help this would be very nearly impossible, and am sure that some patients with no family and no savings just give up at this stage.

We are told to save for our retirement which we have done, but are now spending it on this drug to stay alive, will also have to sell assets as and when this becomes necessary.

We have informed them of our wish to appeal and they have invited us to a meeting on the 20th November to discuss what will happen and to help us prepare".

Click here to read a Hansard report that gives more information about Robert's experience and shows the great support Robert's MP Steve Webb has given him.

17 November 2008 - update from Robert

"In the build up to the scan on 8th November I was full of trepidation just wondering what else they may find.  Then the wait, 4 days seems a terribly long time. Then elation - did the report really say some tiny nodes have disappeared and others have shrunk in size?  Yes it did!  Sutent is working. The relief is indescribable.  If it wasn't for the funding and appeal procedure we still have to go through we could start relaxing and enjoying life again".

23 December 2008 - update from Robert's wife

"Five days before the appeal was to take place Robert was phoned to say the PCT would fund SUTENT from 1st December! Elation, but what a journey to get there - unless you've been there, done it and got the teeshirt you just can't imagine...

That was ten days ago now but it's still not sunk in. We've had to conclude the story with the media who have been following Robert's progess and that's no easy job either, firstly did we get the right message across, and flipantly do we really look like that? doesn't look like I brushed my hair...

We can now look forward to relaxing over the Christmas holiday and take stock, perhaps we can think a little way ahead and book that trip on the Orient Express to Venice which we promised ourselves now that all our savings won't be taken up by Sutent.

Mainly though we want to thank everyone, especially Stella and the Rarer Cancers Forum who have given us so much support over the last very difficult six months, without it I don't think we would be in this position now".