We support patients from across the Greater Manchester Area and our support helps people with Sickle Cell Disease to participate more fully in aspects of life that non-sufferers take for granted (e.g., employment, education, social interaction).
How You Can Help
- Simply book your next holiday with Charitable Travel and tell us you want to support Sickle Cell Care Manchester. The charity will then benefit from the free donation you can make as part of the booking process. To read more about how this works, head to our ‘About Us‘ page.
- If you want to make a donation to Sickle Cell Care Manchester and you are not booking a holiday, click here to visit their website.
- Visit https://sicklecellcaremanchester.co.uk/ to sign up to newsletters, and follow the Sickle Cell Care Manchester social media pages and help spread the word.
How You Can Help
- Simply book your next holiday with Charitable Travel and tell us you want to support Sickle Cell Care Manchester. The charity will then benefit from the free donation you can make as part of the booking process. To read more about how this works, head to our ‘About Us‘ page.
- If you want to make a donation to Sickle Cell Care Manchester and you are not booking a holiday, click here to visit their website.
- Visit https://sicklecellcaremanchester.co.uk/ to sign up to newsletters, and follow the Sickle Cell Care Manchester social media pages and help spread the word.
Who are we?
We are a BAME led registered charity that was founded and is governed by BAME people with ‘lived experience’ of Sickle Cell Disease (SCD). Our services are co-designed and co-delivered by people with ‘lived experience’ of SCD. We provide practical and emotional support for adult sufferers of SCD in Greater Manchester to improve the quality of their life and their physical and mental wellbeing.
Our beneficiaries are adult sufferers of SCD and SCD Trait. SCD is the full-blown Sickle Cell Disease and Sickle Cell Trait relates to people who have the gene that causes Sickle Cell Disease. These people do not have the full disease but the implications of having trait are enormous and include major decisions about how they will live their life. They need to make decisions about the nature of the employment they undertake, lifestyle choices around exercise, nutrition, stress and living conditions and relationships, marriage and having children.
Sufferers who often identify as ‘warriors’ have reported that they are misunderstood and excluded from everyday life which makes them feel like they are in battle with the disease and wider society. For example, employers can be reluctant to employ an SCD sufferer because SCD is an unpredictable condition where people experience pain crises that can vary from mild to severe enough for hospitalisation.
As well as enabling sufferers to better manage their condition, we work with employers, education establishments and the NHS to overcome prejudice and identify how best to support sufferers within the workplace, education, and the health system, and to improve knowledge and understanding of the challenges of living with the disease.
What is Sickle Cell Disease?
Sickle Cell Disease is the most common inherited blood condition in the world. If two people with Sickle Cell Trait have a child, there is a one in four chance of that child being born with Sickle Cell Disease. SCD is a chronic, lifelong disease with no cure. The main feature of the disease is that blood cells that are normally flexible and round, become hard and sickle shaped.
When blood cells become ‘sickled’ a person may experience a pain crisis that can range from mild to pain that is severe enough to cause them to be hospitalised to get the pain under control. As more of their blood cells change shape, the sickled cells become stuck in their veins, blocking normal blood cells from flowing through. Blood cells carry oxygen around the body so when blood cells get stuck behind sickled cells, it can lead to a loss of oxygen to major organs, including the brain.
What Sickle Cell Care Manchester Does?
We support patients from across the Greater Manchester Area and our support helps people with Sickle Cell Disease to participate more fully in aspects of life that non-sufferers take for granted (e.g., employment, education, social interaction). We know from feedback that our support reduces feelings of isolation, increases people’s inclusion in society, and reduces their reliance on medical services, including hospitals. Since 2011 we have done this by:
- Visiting people at home or in hospital and supporting people through hospital discharge.
- Advocating for people who feel they have been discriminated against because of their SCD status.
- Organising and hosting support groups and advice sessions both physical and virtual.
- Managing an online helpline.
- Working with NHS partners to provide counselling and therapy.
- Supporting people to navigate public services including housing, employment, education, and social services.
- Training educators, health professionals and employers and advocate for systemic change across education, health, and industry.
- Giving people with Sickle Cell Disease a voice and supporting the efforts of partner organisations such as Sickle Cell and Thalassemia Centre Manchester to raise awareness of the disease and to support people living with SCD.
We also work to address differences in the level of care of sickle cell patients between paediatric and adult services. The difference is stark with paediatrics being more knowledgeable and compassionate towards children with sickle cell than is the case within adult services.
Get in touch
Sickle Cell Care Manchester, City View House, 5 Union St, Manchester M12 4JD
Registered charity number 1162402.
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