Our charity is governed by BAME people with 'lived experience' of Sickle Cell Disease (SCD) and all of our services are co-designed and co-delivered by people with 'lived experience' of SCD. We provide practical, emotional and advocacy support for adult sufferers of SCD in Greater Manchester to help them manage and understand the condition, to raise awareness among wider society, to improve the experience for sufferers within health and education and to promote opportunity and inclusion.
Sufferers are often excluded from everyday life because of the ongoing, unpredictable nature of SCD. Employers may be reluctant to employ an SCD sufferer as pain attacks frequently result in an inability to maintain a ‘normal’ life disrupting education and social activities. Children and young people with SCD often miss out on education and can be reluctant to let peers and teachers know they have the condition, leading to misconceptions about their behaviour and attendance.
As well as enabling sufferers to better manage their condition we work with employers and educators to overcome prejudice and identify how best to support sufferers within the workplace and education. We work to raise awareness of the need for early screening for SCD and the need for BAME blood and organ donors of which there are national shortages. SCD sufferers regularly need blood transfusions and organ transplants and often have the rarer blood types only found within BAME communities.
A pain crisis can occur any time. When an SCD sufferer is in a pain crisis, they may need to be hospitalised to get the pain back under control. After discharge they may be housebound until they have recovered from the crisis. The COVID-19 pandemic made things worse for people in crisis. It has been harder for their family and friends to support them, harder for them to connect with services and there is more fear than usual about being hospitalised. Over the course of the pandemic we have seen carers become isolated. Some of them are children and others are the partner of a SCD sufferer and they have had to care for their loved one with little to no support from family and friends or professional services.
There are 14,158 people living with SCD in the UK and 1200 people in Greater Manchester. They found it harder to get support when they needed it during the pandemic and were considered vulnerable so many were shielding for long periods. Loneliness has become a major issue, even as normal activities resume and there is still a great deal of fear about socialising and getting back to normal among people who have the disease.
We recruit an army of volunteers to visit people in hospital and at home after they have been discharged from hospital but have not been able to do this for the past two years as our volunteers have been considered vulnerable. We adapted and evolved our services to support people from a distance via:
- Online (Zoom) health, information and advice sessions
- Developing our website into an online resource - this is under construction
- Continuing to advocate for people at tribunals, school boards, etc
- Connecting with people via social media
Your donation, however large or small will help us to:
- Reach more people
- Develop our website resource
- Support more people from a distance
- Resume our in-person services as it becomes safe to do so
People with Sickle Cell Disease can go months without a crisis but when a crisis strikes, they need intensive, ongoing support until every trace of the crisis has disappeared. The unpredictability of it is one of the hardest things to cope with and your donation will allow us to develop a knowledge base so people can better manage the condition and better prepare for when a crisis strikes.
Turn your one off donation into a regular one:
We appreciate a one off donation very much as it allows us to add time, equipment and other resources into our services and projects. One off donations are valuable to us as extra income that we can use in different ways but...
Regular donations allow us to make longer term plans and employ the people we need. Two areas we need more support with over the next 1-2 years are:
- Maintaining and developing the website resource
- Recruiting, training and managing new volunteers
A regular donation provides a basic income that we can build on with one off donations, grants, events and fundraising activities. With enough regular donors, we can do more research to find better ways of supporting people living with Sickle Cell Disease.
Please consider making your one off donation a regular one and help us build a solid foundation so we can support more people. Just £5 a month goes a long way towards helping us achieve this.
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