Spend on cancer per patient in England 2006 - 2007

£10,054

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 in 2008 under the Freedom of Information Act.

Written protocols
The PCT has written protocols to assess exceptional requests for cancer treatment.

Cancer treatments funded by PCT following exceptional requests

Since 01 October 2006, eight patients have had their exceptional requests approved by the PCT. The treatment funded were:

• Cetuximab
• Rituximab
• Sunitinib
• Lenalidomide

Cancer treatments not funded by PCT following exceptional requests

Since 01 October 2006, cancer treatment for two patients was refused. The PCT's Information Governance Assistant did not specify what the treatments were. 

A patient's experience: myelodysplasia and lenalidomide

14 March 2008: I am writing to inform you that my mother has recently been diagnosed with myelodysplasia and needs the drug lenlidamide. The Ashton, Leigh and Wigan PCT have refused to fund the drug and we have lost two appeals. We are now waiting another 2 weeks to find out if they will fund the drug. My mum is desperate because this is the only treatment for her disease. My mothers life has gone from being a very active lady to spending her time mainly on hospital or at home housebound. Please can you offer any help to my mother and our family we have been deeply affected by the post code lottery. Thank you

16 March 2008: I have contacted Neil Turner our local MP. We have had a letter from his office offering us a bottle of house of commons whisky to use as a raffle prize! There was no offer of what he was going to do to support us in our crisis. I telephoned his secretary on Friday 14 March to be told that are very busy and that they would get back to us. I found this rather upsetting and said that I would appreciate it if they could contact me before the appeal as it is urgent and we need their support. I will telephone the PCT tomorrow and ask when I could expect to receive all paperwork that I have sent for. I sent a letter on the 5 March and I am still awaiting reply.

23 March 2008: I telephoned the PCT to see if they had forwarded the paper work to us to be told that Kay Fisher was on annual leave so I asked to speak to Kim Godsman who I was told was also on holiday. I explained that it is urgent that we get the paperwork and told them that every time I ring the PCT the person I need to speak to is always on holiday! Nice to think that they can enjoy having holidays why we wait desperately for our mothers decision which will be made before this Friday. Kay Fisher only returns to work on the Tuesday.

28 March 2008: We have just got back from the hospital with the best news in the world. Today my mother, my brother and myself were at The Christie Hospital for an appointment with Dr Dennis we were to learn whether my mothers drug lenalidamide had been funded by the Ashton, Leigh and Wigan Primary Care Trust.  To be honest I didnt hold much hope!
We were told by Dr Dennis that the PCT had again refused the funding. However, The Christie have a  special money pot which is used for people who are suffering from a rare form of cancer.  In my mothers case this applies to her because there was only one lady last year diagnosed with myleodsyplasia -5q syndrome who was able to have a bone marrow transplant.  (Unfortunately for my mum she is unable to have the bone marrow transplant due to having the lung disease bronchiectisis) and my mum is the only person this year to have the disease.  Therefore The Christie have agreed to fund my mums treatment of the drug and all her care for as long as she needs it.

We are so happy and feel very fortunate. However I have looked into so many cases of the postcode lottery I still fell that I want to campaign to help other patients who will endure what  we as a family have.  It has been the most upsetting unconceivable dilemma that we have ever found ourselves to be involved in.  I feel that people could never appreciate the heartache and disbelief that this post code lottery causes to the patient and their families.  To be told there is a drug that could help you or your family member and then to be told that there is a huge price tag attached, and then to be told if you manage to get the funds that you have to pay for the rest of your treatment yourselves it is endless, lots of questions to be answered but who by? I would like to take this oppurtunity to thank you for everything that you have done to help my mother and myself at this stressful time I appreciate all your hard work that you do.

12 June 2008: I am writing to you to give you an update on my mum's treatment. As you are well aware my mum got refused funding three times by Ashton, Leigh and Wigan Primary Care Trust the reason being that the good didn't outweigh the bad!!!

My mum had a transfusion 5 weeks ago when her treatment began.  To date my mum hasn't had another. After just eight tablets my mum's haemoglobin levels have remained high and even risen to 12.7 when my mum was at her worst it was 5.1.  My mum had to have a break after just eight tablets due to her white blood cells levels falling a little to low but with an injection they have now risen and she is back on her treatment the wonder drug lenalidomide REVLIMID. The point that we as a family want to raise is that my mum had had to
have 25 blood transfusions from October to May and she had been written off by the PCT.

02 August 2008: I thought I would give you an update on my mum's treatment with the drug lenalidomide for the disease myelodysplasia - 5q syndrome. When my mum started her treatment the doctor at Christies said that his aim was to get my mum to having a blood transfusion every 2 months as you know my mum was having 2 pints of blood every two weeks you will be very pleased to know that since my mum's treatment started she has not needed one blood transfusuin to date.  The doctor is completely amazed as he has never used the drug to treat anyone with what my mum has with it being so rare so to be 10 weeks without a blood transfusion is completely amazing for us all.

To think that the PCT had written my mum off saying that the good doesn't out weigh the bad how could they make this decision when even the doctor couldn't predict what was going to happen and how the drug would work. My mum along with myself have been attending the Christie every Friday for the six months and when my mum last saw the doctor he gave her a month where he didn't need to see her because he is so pleased with my mum's blood levels last week they were the best that they have ever been.  I am aware that there is an interest within the NHS about how my mum's treatment is working we have been told that a doctor from another hospital contacted my mum's doctor and because my mum is doing so well (touch wood) he has been able to prescribe the drug for his patient. So we go forward with hope and thanks that my mum is 100% better and has got her life back we are back shopping together and going girlie things just like we did before our lives got turned upside down by the postcode lottery.