Sickle Cell Care Manchester supports adult sickle cell disease sufferers and their families in Greater Manchester. Our charity was founded and continues to be governed and run by people with 'lived experience' of Sickle Cell Disease (SCD). We started as a community group in 2011 and registered as a charity in 2015. All of our services are designed and delivered by people with 'lived experience' of SCD.

We improve the lives of sickle cell disease sufferers in Manchester, reducing isolation and improving physical and mental wellbeing. Attacks frequently result in hospitalisation. Pain can last from days to weeks and is frequently severe. Sufferers tend to be isolated because of this. The disease mainly impacts minority ethnic communities. It is vital that sufferers learn to manage their condition effectively.

We usually deliver:

• A monthly in-person support group to reduce isolation, build peer-support networks, and share experiences, information and good practice.
• Visit sufferers in hospital offering practical and emotional support, and our volunteer co-ordinator has an NHS provided ward pass to enable this.
• Support hospital discharge.
• Provide a telephone helpline and signpost people to available support.
• Deliver community awareness-raising and information seminars, including the need for screening and blood and organ donations as sufferers more frequently require these, often have rarer blood groups, and there is a national shortage of BAME donors.
• Empower and encourage beneficiaries to have 'a voice' and engage collectively with statutory bodies and other relevant organisations e.g. NHS.
• Deliver relevant workshops to address specific sufferer issues.
• Facilitate focus groups for statutory bodies and other relevant organisations to understand the negative side effects of medication.

SCD is the most common serious genetic condition in the UK, affecting 1 in 19,000 of all births in England. When in crisis sufferers are usually hospitalised. At other times their pain may last from hours to weeks and range from mild to severe. It mainly, (but not exclusively), impacts the BAME community which in Manchester is around 12% of population rising to around 21% in Manchester City.

SCD is listed in the NHS’ Covid 19 Vulnerable Populations List as extremely clinically vulnerable.

We provide practical and emotional support for adult sufferers of SCD in Greater Manchester to help them better understand and manage their condition, including those who are considered ‘hard to reach’. This improves the quality of their life, improves physical and mental wellbeing, increases inclusion and access to the opportunities non-sufferers take for granted (e.g. employment, social interaction), reduces isolation, and builds enduring peer-support networks. This reduces reliance on statutory services e.g. by reducing hospital admissions and GP visits.

Alongside this we raise community awareness of the need for screening and BAME blood and organ donors. Screening ensures sufferers are identified and able to be supported. Blood and organ donations are necessary as the disease results in a greater need for these. Sufferers often have rarer blood groups as they are primarily from BAME communities, but there are national shortages of blood and organ donors from these communities.

We promote opportunity and inclusion. Sufferers are often excluded from everyday life. For example, employers are reluctant to employ an SCD sufferer due to their potential ongoing health issues; and attacks frequently result in an inability to maintain a ‘normal’ life disrupting education and social activities. As well as enabling sufferers to better manage their condition we work with employers and education establishments to overcome prejudice and identify how best to support sufferers within the workplace and education.