More support
More support
There are many sources of support and information for people with Lynch. Please see below a list of some charities that provide online support and information which you might find helpful.
Bowel Cancer UK
Bowel Cancer UK have plenty of resources, including more information about aspirin: www.bowelcanceruk.org.uk.
Cancer Research UK
Cancer Research UK have a set of resources about treating and living with bowel cancer: www.cancerresearchuk.org.
Support for coping with womb cancer www.cancerresearchuk.org.
Macmillan Cancer Support
Macmillan Cancer Support has a free helpline that's open every day from 8am to 8pm. They're there to listen if you have anything you want to talk about.
0808 808 00 00.
If you have been diagnosed with cancer, this support may help you:
MIND
MIND charity can provide support for your mental health if you feel you are struggling: www.mind.org.uk.
Lynch syndrome patient groups
Lynch syndrome UK including free information booklets, and Patient Passport.
Lynch syndrome Ireland including information links such as thisisGO, an online personalised resource for people impacted by gynaecological cancer.
The Eve Appeal
Information and support for anyone making a decision about a hysterectomy, or affected by gynaecological cancer: eveappeal.org.uk.
The Eve Appeal has made A Guide to Lynch Syndrome which is also available in an Easy Read format.
They also have nurses you can speak to about making your decision:
0808 802 0019 or nurse@eveappeal.org.uk.
Peaches Womb Cancer Trust
Information about womb cancer, signposting to support groups and stories from people who have had womb cancer.
Further reading about Lynch syndrome:
Royal Marsden A Beginner’s Guide to Lynch syndrome booklet.
Education for your GP and other healthcare professionals
Genomic notes for clinicians
Quick, concise information to help healthcare professionals make the right genomic decisions: www.genomicseducation.hee.nhs.uk
RM Partners West London Cancer Alliance
Online training for primary care clinicians to help manage Lynch Syndrome patients: rmpartners.nhs.uk
e-Learning for healthcare
Helping Patients Make Informed Decisions: Communicating Potential Harms and Benefits (Cancer Genetics).
UK Cancer Genetics Group (UKCGG)
UKCGG one-page gene-specific management guidelines: www.ukcgg.org.
People’s Stories
Some people find that hearing about other people’s stories of having cancer and cancer treatment is helpful and supportive. Macmillan Cancer Support’s website includes many such stories. Please click here to find out more.
In a separate study, our team spoke to people from diverse backgrounds in a barbershop in South London about their experiences of a cancer diagnosis.
Barbershop videos
These videos were coproduced with leaders in the community and six patients who wanted to share their stories in a relaxed barbershop setting.
The videos above are part of a short filming project which you can read more about in a blog from one of the co-leads, Charlene Young: Co-leadership: A Patient's Perspective (also QR code, below)
The filming took place in a relaxed barbershop setting at Jul's The Hair Klinik in Mitcham, London @julsthehairklinik
Patients with Black African, Black Caribbean or other ethnic minority backgrounds were invited to share their stories
Other partners involved in planning and delivering the project include:
- Dr Elizabeth Bancroft, Dr Eva McGrowder and Dr Emma Hainsworth from the Royal Marsden NHS Foundation Trust
- Lee Townsend from Macmillan Cancer Support
- Judith Neptial from the From Me to You patient support group @frommetoyou.aos
- University of Southampton film alumni Emil Delost and Rhymes (@emildelost; @rhymeswithana)
