CAMPAIGN: Bowel Cancer UK helps fight for treatment

Bowel cancer is the second-most common cause of cancer-related death in the UK, affecting more than 35,000 people a year. But some patients are being denied treatments on the NHS...

Victoria Otley (right): her high-profile case generated publicity for Bowel Cancer UK
Victoria Otley (right): her high-profile case generated publicity for Bowel Cancer UK

Campaign: Patient Campaigning Pack
Client: Bowel Cancer UK
PR team: In-house
Timescale: January - ongoing
Budget: £50,000

This is because a number of drugs – such as Avastin and Erbitux – are not approved by the National Institute for Health & Clinical Excellence (NICE). A key part of Bowel Cancer UK’s role is campaigning on behalf of patients – often those in the later stages of the disease – to gain access to treatments that they’ve previously been denied by the NHS on grounds of cost.

To help patients campaign for the treatments they need by offering all the information they need in one convenient place. To raise the media’s and MP’s awareness of cases where patients have allegedly had to struggle to obtain treatments.

Bowel Cancer UK created a Patient Campaigning Pack, offering advice to patients on how to campaign for treatments and raise awareness of their case. The pack includes ­guidance on ­legal matters and on ­engaging the media and MPs, as well as information about the various bowel cancer treatments and other ­disease-related developments and services.

The charity engaged the pro-bono support of lawyers to help patients appeal against decisions made by their Primary Care Trusts (PCTs). This approach used the concept of ‘exceptionality’ – the patient’s exceptional circumstances mean he or she should be given treatments that are not approved by NICE – as featured in the pack.

During the first two months of the campaign, the charity distributed nearly 1,000 copies of the pack to patients, carers, clinicians, the media, MPs and others.

Victoria Otley was one of the first patients to contact Bowel Cancer UK after her PCT had denied her ­access to Avastin for a second time. After her ­exceptionality appeal was turned down, the legal team, with the support of Bowel Cancer UK, took her case to the High Court in June 2007.

Bowel Cancer UK director of press, PR and public affairs Ian ­Beaumont alerted national journalists to the case.

Otley’s case generated a huge amount of media coverage, both for herself and for Bowel Cancer UK, in national and regional TV, radio, ­newspapers and magazines, including The Daily Mail, The Sun, the BBC and ITN.

The High Court agreed that the PCT had a case to answer and referred the matter to the Royal Courts of ­Justice as a Judicial Review. On 18 July, the case was heard by the Royal Courts of Justice, with the judge ­quashing the PCT’s ruling. The PCT immediately agreed to give Otley the drug.

The coverage around the case helped to put the disease, the charity and the issues firmly on the map.

In addition, Otley’s success encouraged many more patients and carers to contact Bowel Cancer UK for help and for a copy of the Patient Campaigning Pack. More lawyers have since come on board to lend their support and a growing number of clinicians are ­referring their patients to the charity for help.

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