Bowel Cancer UK has been working hard to improve the experiences of younger bowel cancer patients since the launch of their Never Too Young campaign in 2013. This campaign aims to raise the profile of bowel cancer in younger people in the media, but that’s not enough to make a real difference.
To truly make change we need new research, changes to clinical and policy guidance, increased funding for diagnostic services and much more.
The Hold Amy’s Hand campaign launched early last year to raise funds for Amy’s treatment was driven by the tremendous energy and passion of an incredible group of supporters, family and friends.
Bringing these two very impactful campaigns and teams together represents an enormous opportunity to create a lasting legacy in Amy’s name and make a significant impact upon bowel cancer in younger people in the UK today.
Never Too Young so far
Each year 2,100 young people under 50 are diagnosed with bowel cancer, the majority of which are already at stage 3 or 4 of the disease. Since 2013 Never Too Young has:
- Ensured younger people are included for the first time in guidelines in England and Scotland for referral for suspected cancer
- Secured funding for a research project to help GPs identify which younger people to refer for diagnostic tests
- Produced an information booklet on the information gaps younger people identified
- Formed a global alliance with bowel cancer charities in the USA and Australia
- Published guidance with the Royal College of Pathology to make sure that everyone under the age of 50 with bowel cancer is tested for Lynch Syndrome
- Carried out a follow up survey of over 400 younger patients – the largest attitude survey of this group ever undertaken.
Never Too Young has taken a coordinated, cross-organisational approach to improving health outcomes for young patients at both policy and practice level and have achieved an astonishing amount so far.
But there is so much more to be done.
It is not possible to simply rely on the stories and experiences of younger people with bowel cancer to drive the change needed to raise awareness of the disease in younger people and, ultimately, save more lives. We need the substance and evidence that Never Too Young is delivering to truly have an impact on bowel cancer in younger people in the UK today.
Never Too Young – the immediate priorities:
Our next steps now include:
- Monitoring the implementation of the new NICE (in England) & SIGN (in Scotland) guidance for patients
- Monitoring and ensuring that the new guidance from the Royal College of Pathology is implemented across all four nations
- Working to ensure that people at higher risk of bowel cancer can access the screening surveillance they require. This could include the development of a genetic registry for younger bowel cancer patients across all four nations
- Continuing to campaign to ensure that adequate endoscopy resource is in place to meet demand
- Working with scientists and clinicians to develop and fund research projects that will lead to the earlier diagnosis of younger patients
The Never Too Young campaign has worked with leading clinical and policy experts to identify the following recommendations which, if and when implemented, will make a significant difference to the diagnosis, treatment and support that people diagnosed with bowel cancer under the age of 50 receive.
We want to see:
- Improved clinical guidance and practice on bowel cancer in younger people
- Improved information for younger people on bowel symptoms
- Better information and support for younger bowel cancer patients from healthcare practitioners
These objectives will ensure that younger people are diagnosed earlier and that awareness of bowel cancer in younger people is increased.
Hold Amy’s Hand is supporting Bowel Cancer UK’s Never Too Young campaign in two ways:
NEW POLICY POST
The valuable funds given by Hold Amy’s Hand to Bowel Cancer UK will pay for a vital new permanent post within their Policy & Public Affairs team.
This new Policy & Campaigns Officer will be solely dedicated to the development and progress of the Never Too Young campaign, to ensure that they continue to make sustainable changes that will have significant benefits for younger people with bowel cancer and raise awareness of the disease in younger people.
The outcomes of the work they carry out will create more opportunities to generate further funding and enable us to grow and develop Never Too Young even further.
The aims and objectives of this vital post will:
- Increase our influence with clinical and policy decision-makers in all four UK nations
- Develop research projects and secure funding to deliver those projects
- Work closely with our communications team to secure national and regional media coverage for our campaigning work on younger people
- Conduct further policy research to understand better the experiences of specific groups of younger patients, such as those with Lynch syndrome
- Develop our network of campaign supporters who help to amplify our messages.
- Work closely with our Education & Information and Fundraising teams to develop initiatives that will secure further funding for the campaign
- Consolidate and develop our Never Too Young Global Alliance with partners in the US and Australia, to coordinate international work on younger bowel cancer patients and share best practice
FUNDRAISING & AWARENESS
Hold Amy’s Hand will continue to fundraise for the Never Too Young Campaign, and encourages your individual efforts to do so as well. We will be educating people about bowel cancer in the young via our extensive network and hope that you will continue to share our social media posts and support our work.