SUNDAY TELEGRAPH ENQUIRIES:

To receive your copy of “Treatment We Need – How to apply for NHS Exceptional Funding for Treatment”, a ground breaking guide to help you fight the NHS bureaucratic maze, please email kate@pamelanorthcottfund.org.uk		  
  The Pamela Northcott Fund is a patient led voluntary organisation with charitable aims, providing unique and unprecedented advocacy and support to kidney cancer patients denied access to new drug therapies, yet to be approved by NICE.  It offers a bespoke one to one service to patients and their carers, by taking on their individual appeal for treatment and representing them at their Primary Care Trust or Local Health Board Appeal panel.  We offer support and advice to patients throughout the appeal process and beyond – we have also initiated a peer support network to link up patients and families that are in the same situation.  The Pamela Northcott Fund also works to highlight the campaign nationally, both through the media and parliament supported by expert clinicians.   We have now successfully won funding for over 40 individual cancer patients.      
 

What started as an individual battle to get treatment by Pamela Northcott has grown and developed into a life line to other patients and families in a similar position.    In 2005 Pamela was diagnosed with kidney cancer and told her treatment options were limited.   She refused to accept this and began researching her options.  She found that two new drugs Sutent and Nexavar were being used as standard treatment in the rest of the western world.   Along with her daughters Emma and Kate, she took on her local trust and the Welsh Assembly government and became the first patient in Wales to access the new cancer drug, Nexavar.   However the battle took 9 months and by the time she got the treatment Pamela had just days to live – however she lived another 4 months on just a quarter dose of Nexavar.     She died on August 12th 2007.  The Pamela Northcott Fund and its work is my tribute to an inspirational, fun and unique woman.  A woman I was very proud to call Mum.    

Kidney Cancer is unique - it doesn’t respond to standard chemotherapy and radiotherapy.  The treatment options are limited and new targeted therapies including Sutent, Nexavar, Avastin and Torisel represent real hope and a huge advance to patients.   Patients in the UK are aware that these drugs are available in most of the western world and cannot understand why they are being denied what is deemed a standard therapy for the many thousands who happen to live in a different country.  The situation for patients and families is one of real psychological anguish, they are aware that without these drugs they will be offered no further treatment.

We feel extremely privileged to be working with people going through such personal tragedy.   To offer them hope and support and to take on their battle for them is a responsibility that we take very seriously.   We will never give up on a patient – there is always a way forward.  Our successes speak for themselves but we know we have a long way to go.   The Pamela Northcott Fund is also beginning to get enquiries for help from other cancer patients needing different non NICE approved drugs which we are happy to take on.   Our goal is to ensure all cancer patients access the best treatment available, paid for by the NHS at the earliest opportunity.

Kate Spall

kate@pamelanorthcottfund.org.uk

PATRON Professor R Hawkins

 

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