Simply put, there is a lack of knowledge regarding Sickle Cell Disease (SCD) and its many effects. Most people outside of the African and Caribbean community are unaware that they too can be impacted. They may have the condition themselves (diagnosis rates for white European and Mediterranean communities are rising) or have relatives, co-workers, or neighbours who require support.

A sickle cell patient may need help locating the best medical attention, social support, and community education. Since Sickle Cell Care Manchester (SCCM) staff do not have clinical training, we will direct service users to knowledgeable nurses, consultants, and nurse counsellors employed by Greater Manchester Hospitals to ensure that they are always receiving high-quality care. 

Sickle Cell Care Manchester’s Role

We play a significant role in identifying people who may require screening for the status of their condition because it is the only reliable way to tell if someone is a sickle cell carrier, also known as sickle cell trait.

Sickle Cell Care Manchester participates in radio interviews and live radio phone-ins on local radio to discuss the numerous issues surrounding Sickle Cell Disease and what it means to have “carrier status.” We woirk to stay on the cutting edge of advancements and new discoveries in the field of sickle cell disease, and to keep the public informed of these developments.

We also provide formal and casual presentations in community centres, schools, colleges, places of worship, as well as seminars for the local African and Caribbean community. These take place in person, via video conferencing or on social media.

Additionally, we speak up for those who have sickle cell disease and inform their employers and educational institutions of the seriousness and severity of their condition. People who have SCD frequently find it very difficult to convey this information. Our support helps the employer or educator understand why the person with sickle may:

• Have a high rate of absence.
• Be disorganised or behind schedule
• Have trouble focusing and completing specific activities.

Lack of Support

The Department of Work and Pensions frequently fails to provide adequate support for those with SCD who deserve benefits and regrettably, the DWP does not always comprehend their needs. In these cases, we act as advocates. We also get advocacy referrals from the NHS, which we have a high success rate with.

Anyone who has a child, partner, or sibling with sickle cell disease suffers as well. It is incredibly tough to watch a loved one suffer in excruciating pain while powerless to comfort them. Caregiving for someone with sickle cell disease is incredibly demanding, and carers are frequently left feeling fatigued on both a physical and emotional level. To help, we pool best practise initiatives and information sharing.

The condition can make people withdraw from others to “become less of a burden”. They may also feel that “no one understands/believes them” regarding what they are going through. We combat this isolation by connecting our clients with other like-minded individuals who have a relaxing and upbeat approach towards this disease. Additionally, Sickle Cell Care Manchester places a high value on friendship, guaranteeing that every person will always have a listening ear.