Improving services for people with Lynch syndrome

I recently wrote to my local MP about improving services for people with Lynch syndrome because my father was diagnosed with Bowel cancer in 2011 and was never tested for lynch syndrome. My life has been changed forever because of this terrible disease and I want to do all I can to help prevent this from happening to others.

Dear Steve, 
You may have seen, the National Institute for Health and Care Excellence (NICE) published guidelines recommending everyone diagnosed with bowel cancer is tested for Lynch syndrome - a serious genetic condition that increases the risk of bowel cancer by as much as 80%, as well as increasing the risk of many other cancers. As it’s an inherited condition, there’s a 50:50 chance of passing it onto your children,  so 
sadly whole families can be devastated by cancer.

As your constituent I am concerned that of the estimated 175,000 people that have Lynch syndrome in the UK, 95% don’t know that they have it. This is because people aren’t being systematically tested. It's crucial that people are identified so they and their families can take steps to reduce their risk of getting cancer, like surgery or regular colonoscopy.

That’s why it’s so important that all hospitals follow the guidance and test everyone diagnosed with bowel cancer. But I know from research published by Bowel Cancer UK that some hospitals aren’t testing for Lynch syndrome or providing patients with timely care once they are identified because they don’t have the resources or the capacity in place. This simply isn’t good enough and that’s why I'm supporting Bowel Cancer UK’s campaign to improve the diagnosis and care of people with Lynch syndrome.

As my MP, please can you join me in supporting the campaign by:
1. Contacting our local Clinical Commissioning Group and hospital to ask if they will be committing the resources necessary to implement NICE guidelines.
2. Helping to raise awareness of the issue by supporting Bowel Cancer UK’s campaign on social media. Sample tweet: I’m supporting @Bowel_Cancer_UK’s campaign to  stop Lynch syndrome devastating families with cancer.
Please support https://shar.es/19dDC6

If you would like to take further steps to support the campaign, please enquire at [email protected]

I am personally supporting Bowel Cancer UK because my father was diagnosed with Bowel cancer and was never tested for lynch syndrome and have experienced the devastation this cancer causes, when my husband lost his battle with bowel cancer at the age of 34. Doctors failed to recognise that young people can get this cancer at an early age, which resulted in his diagnosis being too late.

My life has been changed forever and I want to do all I can to help prevent this from happening to others.
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I look forward to hearing from you.
Yours sincerely,
Emma Matthews

Please find below a positive response that I received from Steve Double.

Dear Emma
Thank you for your email in regarding Lynch syndrome and bowel cancer.

I appreciate your concerns, as I know bowel cancer is one of the most common types of cancer diagnosed in the UK, in fact my father has had and survived bowel cancer twice. Over eight in ten cases of bowel cancer occur in the over 60s and I agree that early diagnosis is key in improving outcomes, especially with people who have Lynch syndrome.

Under the NHS Bowel Cancer Screening programme in England, people aged 60-74 years old are sent a home testing kit every two years. Those aged above the eligible age limit are also able to self-refer for screening. As part of the programme, a new test is being introduced which is easier to complete and it is hoped that 200,000 more people per year will take up the opportunity to be screened. An additional one off bowel scope screening test is also being introduced for those aged 55.

All hospital trusts are able to offer screening for patients if clinically appropriate. New guidelines by the National Institute for Health and Clinical Excellence, published in June 2015, states that GPs should offer screening for those who are aged 60 and over presenting with relevant symptoms.

Cancer survival rates in the UK have never been higher, however, I am aware that there is still more to be done. The Government is working with the NHS, charities and patient groups to deliver the new cancer strategy developed by the independent Cancer Taskforce. By 2020, everyone urgently referred with a suspicion of cancer will receive either a definitive diagnosis or the all clear within four weeks.

The £1.2 billion Cancer Drugs Fund has helped over 95,000 people and I will continue to support the Government’s commitment to increase NHS spending in England by £10 billion in real terms by 2020/21. I fully support those who have Lynch syndrome in their families get tested as per NICE guidelines and if you are having problems with the KCCG in funding this I am happy to take up your case.

Once again thank you for contacting me about this important issue.

Kind regards,
Steve
Steve Double MP
Member of Parliament for St Austell and Newquay
0207 219 4408
01726 829379
http://www.stevedouble.org.uk/