The Hope Project: Support for families with Sickle Cell Disease in Scotland
4 mins read
Wednesday 8 October 2025
Christine Membi is a parent to two children and lives with her family in Glasgow. They live with sickle cell disease, as do many other families across the UK.
Sickle cell disease is a very much misunderstood condition that predominantly affects people from African and Caribbean backgrounds. This often that means that the right support is not always available.
Here, Christine tells us more about the condition and how she became involved in setting up the Hope Project to provide support to those suffering with Sickle Cell Disease and their families.
“Sickle Cell Disease (SCD) can affect anyone and could be life threatening. It predominantly affects people from African and Caribbean backgrounds. As such, we have experienced barriers to services, support and health inequality. So, in 2016 I along with just a handful of other families set up The Hope Project Scotland.
We had a noble idea of providing support to families living with SCD. Now we are a pro-active dedicated group, which started in an environment where Sickle Cell was not well known.
We have since grown and now have over 280 registered members across Scotland. Members can connect with each other and access medical information, holistic and social support along with support for their mental health. We also help people with other rare blood disorders.”
Building a supportive community
“We exist to help patients and families in dealing with its complications. We aim to build a community to help ease stress, reduce isolation, loneliness and trauma that’s often caused by the unknown.
“With so many medical appointments ,accessing appropriate childcare and safe travel is a concern for our families. It can often be difficult to find funding for very basic things like heating (an absolute necessity for people living with this condition, knowing that the majority are on very low income and sometime do not get the disability benefit). Funding to keep the group running is a constant challenge especially in recent years.
“The Covid pandemic affected our families immensely. Challenges included accessing medical support, PPE, medicines, cost and risk of travel to hospital, risk of infection on public transport or shopping… Opportunities to speak to someone in the group who could provide some advice, help them get a break, provide practical things like hand sanitiser were essential. We were able to access some funding for Christmas treats too. These were so welcome and uplifting at a time of great difficulty.
“We look after our members’ mental health. This is very important to keep them from having painful crisis. Anxiety and stress trigger these crises and consequently hospital admissions.”
Support from Contact
“We continue to provide information, guidance and parent resources. We run regular awareness-raising days, family activities, support on sleep issues, access to support for parents to build good mental health and to counselling, training for self-esteem and confidence building; awareness raising session on Sickle Cell with professionals and wider public and ultimately empower families and build self-esteem.
And we now have chat group where young people can talk about any concerns they have growing up with SCD along with social, sport and music interests. We have a number of interesting, focussed sessions including a recent cooking project providing the skills and culinary flavours of African and Caribbean food. This was a joyous family event – if slightly competitive!
“Contact has worked with us to help build our community of support from the very beginning. They’ve provided wider resources, support in hospital, family finance advice and information to our families in person. They have helped us to build resilience as a group and to influence policy and legislation to improve the lives of all families with sickle cell. Contact understands who we are, and that matters.
“The world has changed since we set up our group. It can at times feel a bit scary, but we always pull together and look forward to the joy our families bring us every day in every way.”
Find out more about The Hope Project Scotland – Scotland’s foremost charity for Sickle Cell Disease.
Join The Hope Project on Saturday 8 November for a traditional family day out
Taking place at Alhambra House in Glasgow from 2-6pm, the Hope Project’s fun day on 8 November is for all the family to learn and share in the cultural diversity of families through traditional dress, food, music and great conversation.
You’ll be able to meet Contact’s Scotland team there too!
