New research out today from Beating Bowel Cancer has found that oncologists think that one in three of their bowel cancer patients would benefit from treatments not currently approved for use on the NHS1.

A survey of oncologists commissioned by Beating Bowel Cancer as part of their Ethical Dilemmas campaign revealed that many clinicians feel they are not getting enough support from the NHS on how to approach the issue of treatments not routinely funded with patients. Three quarters of those surveyed admitted to being unaware of any national guidance1, whilst almost all said their hospital does not provide any local protocol on this issue.1 Many oncologists (two-thirds) are also worried about the amount of time they are spending discussing these treatments and expressed concern this was taking time away from other important activity.1

As a result, Beating Bowel Cancer is calling on the Government to urgently put in place measures to improve support for clinicians and address this issue, including increasing the length of appointment times, providing more NHS training and ensuring that national guidance is implemented and local protocols are put in place.

Consultant Clinical Oncologist at the Christie Hospital NHS Foundation Trust in Manchester and member of Beating Bowel Cancer's medical board, Dr Mark Saunders said, "Clinicians need a clearer steer both nationally and locally about how we broach the very sensitive issue of accessing drugs not routinely available on the NHS. As a doctor often faced with patients who simply could not afford to pay for treatment if their PCT refused to fund a drug, I regularly have to face the dilemma of how and when to start the difficult discussion about accessing such treatment. Since the Government has now given the green light to top-ups, however, discussing cost versus benefit is something that many clinicians feel ill at ease with, and consultation times are simply inadequate for these sorts of conversations."

Other findings from the survey showed:

- Four out of five consultants described the level of support on how to talk about unfunded treatment as 'fairly inadequate' or 'not at all adequate.'1

- Nearly two thirds of respondents somewhat or strongly disagreed that discussing the cost of treatment is part of a doctor's role, with many (60%) thinking it should be a hospital manager's role or the role of an information manager (33%.)1

- Yet on average, consultants admit that half of their patients would welcome a frank discussion of all treatment options including those not routinely funded by NICE1 and nearly all respondents mention treatment options for which they may not be able to secure funding; 20% do so often.1

- One third of oncologists had at times been told by their PCT not to apply for exceptional funding.1

Hilary Whittaker, Chief Executive of Beating Bowel Cancer, said, "Every day, we talk to people living with bowel cancer and the vast majority tell us that they want their doctors to inform them about all the treatment options available - whether or not they think they can afford them.

"That's why it's so worrying to discover that many bowel cancer patients might not be getting the full picture when it comes to their treatment options, mainly because doctors feel uncomfortable discussing cost. It's quite clear that the NHS needs to review its system so that oncologists are given proper guidance and support in order to have what is often a very sensitive and difficult discussion with their patients."

Following the results of this survey, Beating Bowel Cancer plans to provide clinicians with information that will signpost them to existing guidance and good practice on discussing treatment options not routinely funded by the NHS, as well as applying for exceptional case funding.

The charity has also just published an information pack for patients advising them on their options for accessing unfunded treatment, together with comprehensive advice on how to tackle the exceptional funding process.

To order or download the new pack and for general information about treatment options, visit Beating Bowel Cancer's website: beatingbowelcancer/ or call 08450 719300.

'Ethical Dilemmas' is a campaign run by Beating Bowel Cancer, with the support of Roche and Merck Serono.

About The Survey

1. The report survey was conducted by Purdie Pascoe online between February 9th-13th 2009. 40 consultants responded to the survey. All respondents were consultants who see at least 10 new bowel cancer patients per month.

2. Beating Bowel cancer is a national charity working to raise awareness of symptoms, promote early diagnosis and encourage open access to treatment choices for those affected by bowel cancer. The charity provides information, education and support to bowel cancer patients, their families, the general public and the medical profession.

3. The Department of Health consultation on 'Guidance for NHS patients who wish to pay for additional private care' closed on the 27th January, the Government response to this is due to be published later this year. The Health Select Committee is also currently running an inquiry into top-ups. Beating Bowel Cancer gave oral evidence to the Committee.

Key Facts About Bowel Cancer 2

- Bowel cancer is a disease of the large bowel (colon) or rectum. It is also sometimes called colorectal or colon cancer
- It is the second largest cause of cancer deaths in the UK
- It is the third most common cancer in the UK after breast and lung cancers
- Of the 100 new cases of bowel cancer diagnosed every day, almost 50 people die from the disease

Bowel cancer treatments licensed in England and Wales3

Treatment Name - 5-FU
Treatment Stage - 1st line treatment for Bowel Cancer
NICE - Recommended

Treatment Name - Oxaliplatin - (Eloxatin®)
Treatment Stage - Adjuvant treatment of stage III colon cancer after complete resection of primary tumour and treatment of metastatic colorectal cancer
NICE - Recommended

Treatment Name - Capecitabine (Xeloda®)
Treatment Stage - Adjuvant treatment of stage III colon cancer and 1st line treatment of metastatic bowel cancer
NICE - Recommended

Treatment Name - Tegafur-uracil (Uftoral®)
Treatment Stage - 1st line chemotherapy treatment of metastatic colorectal cancer in combination with calcium folinate
NICE - Recommended

Treatment Name - Irinotecan (Campto®)
Treatment Stage - 1st and 2nd line treatment of advanced colorectal cancer
NICE - Recommended

Treatment Name - Bevacizumab (Avastin®)
Treatment Stage - 1st line treatment of metastatic bowel cancer in combination with intravenous 5-FU/folinic acid with or without irinotecan
NICE - Not recommended

Treatment Name - Cetuximab (Erbitux®)
Treatment Stage - Treatment for Epidermal Growth Factor Receptor (EGFR)-expressing metastatic bowel cancer that is no longer responding to an irinotecan-containing therapy
NICE - Not recommended

Treatment Name - Panitumumab (Vectibix®)
Treatment Stage - Treatment for Epidermal Growth Factor Receptor (EGFR)-expressing metastatic bowel cancer with non-mutated (wild-type) KRAS that is no longer responding to an irinotecan and oxaliplatin-containing therapy.
NICE - Not yet reviewed

1. Ethical Dilemmas' research among bowel cancer consultants, Beating Bowel Cancer data on file
2. Cancer Research UK: info.cancerresearchuk/cancerstats/types/bowel/
3. Beating Bowel Cancer, 'Treating Bowel Cancer: Your Pathway'

Source
NHS

View drug information on Avastin; Eloxatin; Erbitux.