The UK Story of Sickle Cell and Thalassaemia.

This month Sasha and Mavis enjoyed hearing about the story of Sickle Cell and Thalassaemia. The event was introduced by Prof Dame Elizabeth Anionwu the first sickle cell specialist nurse in the UK. It was an enlightening afternoon spent reflecting on the experience of the Sickle Cell and Thalassaemia community and what that could teach us all about improving inclusion in genetics.

Introduction with Prof Dame Elizabeth Anionwu to the Genetics Engage event ‘The UK Story of Sickle Cell and Thalassaemia’
Interview with Prof Kark Atkin about his 20 year experience of research and service development for Sickle Cell and Thalassaemia.
The UK Story of Sickle Cell and Thalassaemia : What can in teach us about inclusion in genetics? Sasha and Mavis talk to friends from the Sickle Cell Society, The UK Thalassaemia Society, The Sound of Sickle and Those involved in the care of Sickle Cell and Thalassaemia Society.

The Sickle Cell Society


The Sound of Sickle

Our Journey, Our Story: History and Memory of Sickle Cell Anaemia in Britain 1950 – 2020 is available online at:



Race, masculinity and genetic counselling.

During my conversation with Suresh Rambaran about Black men and prostate cancer I surprised myself by stating that I had never seen a Black man in a genetic cancer clinic, in the UK, in nearly 10 years of working in genetics counselling.

While it may be expected that less men seek genetic counselling for conditions which increase the risk of breast and ovarian cancer, there are genetic conditions that increase the chance of cancer for both men and women. Conditions like Lynch syndrome and familial adenomatous polyposis (FAP) syndrome that increase the risks of bowel cancer for example. I work in a diverse part of the country so even accounting for the expected differences, it remains both noticeable and curious to me that I cannot recall seeing a Black man for genetic counselling for any cancer condition. It is important to note that I have seen patients for a range of other non-cancer genetic conditions and although the numbers are often smaller than expected, I have seen Black men in these clinics.

Low numbers of men presenting in healthcare is well recognised. Men appear less likely to recognise symptoms, report them early or to adhere to screening. The health seeking behaviour of men with hereditary conditions that primarily affect women show similar trends though additional factors like being less likely to receive information or having lower risks of cancer can contribute to the differences observed.

For me, these issues raise questions about how personal and social perceptions of masculinity drive health seeking behaviour and even how they contribute to what genetic information is shared with men. The intersectionality of race and masculinity on health seeking behaviour has been considered for years. Studies have looked at the cultural norms, values and expectations that impact how men seek services. From the individuals we have spoken to through Genetics Engage we have heard that difficulties accessing services can be due to who professionals refer to specialist services like genetic counselling. Perhaps professionals may worry that patients might react negatively to referrals or at worst they may hold assumptions that they just would not benefit or be interested.

Reflecting on a month like Movember certainly makes me think about ways in which conversations can be had to better support men to engage in genetic services. Specific and tailored interventions just will not be possible without talking to Black men about what they want and need to offer services that improve their health.


Black men and prostate cancer Events

Movember Black men and prostate cancer

To mark Movember Sasha and Mavis decided to have a chat with Suresh Rambaran, a specialist nurse who has championed engagement and awareness of prostate cancer for Black , Asian and minority ethnic men.

Genetics Engage: A conversation with Suresh Rambaran about genetics, Black men and Prostate cancer, November 2020
Genetics Engage: After a chat with Suresh Rambaran Sasha and Mavis think about true Engagement, November 2020

Suresh kindly shared some links to other organisations you might want to check out.

Cancer Equality –

Orchid (Male cancer charity) – 

Can survive UK –