Guest Bloggers Lorna & Lynn from Sickle Cell Care Manchester

Sickle Cell Care Manchester

Hi, we're Lorna and Lynn from Sickle Cell Care Manchester. Sickle Cell Care Manchester started life as an informal group of people living with sickle cell disease (SCD) who came together because they noticed a gap in community support for people with the disease. We started recruiting volunteers to visit people in their homes and in hospital, and in 2015 we registered Sickle Cell Care Manchester as a charity. Prior to the pandemic we visited people in their homes and in hospital to help them through a crisis. We have a whole range of other services available such as advocacy, campaigning and education which have all grown as we have seen a real need for them.

We work closely with Patsy, buzz Manchester Health & Wellbeing Service's Neighbourhood Health Worker for Hulme, Moss Side and Rusholme. We value our relationship with Patsy and feel that she has helped us adapt and modify our services over the course of the pandemic. Patsy has been our go to person in terms of signposting and accessing resources and support networks. The image at the top of this blog post is of both of us with Patsy at a Black History Month event in Manchester.

Before 2020 most of our services were offered in person so we had a small catchment area, working with around 150 people each year. When the pandemic struck in March 2020, we could no longer offer in person services. Our policy of being 100% led and staffed by people with lived experience had always been a strength, but suddenly became a weakness in the pandemic, because every person in our organisation was categorised as clinically vulnerable. We looked to moving our support online.

As we always do, we adapted, moved our support online, and recruited two part-time staff who do not have SCD. They have been able to continue building our profile, working with clients, and supporting the production of 10 advice videos so people can access information whilst isolating. The videos look at nutrition, budgeting, patient rights on hospital admission, and applying for personal independent payment, and can be accessed on our website here.

Our new recruits have also supported our CEO and board to strengthen our foundation and to plan for reopening in person services when possible. Our timeline for bringing people together in a room for support groups, workshops and other events is longer than the timeline for other people to resume normal life, and may not happen until after the winter of 2021/22.

We work tirelessly to address the inequalities in service provision, and were pleased to partner with North West of England Sickle Cell Disease Haemoglobinopathy Coordinating Centre (HCC) and the Caribbean and African Health Network for a project. This project gathered feedback from individuals living with SCD about their experiences, and ways in which the service could be improved. This was a great opportunity for voices to be heard and for participants to have some involvement in shaping their service for the better.

We’ve been invited to fundraising events, and we even had someone sky dive to raise funds for us. We’ve also been invited to give talks to raise awareness of the disease and the importance of blood donations. Knowing how vital it is to increase the number of blood donors from African and Caribbean communities, we took part in a blood drive on Sickle Cell Awareness Day on 19th June.

It is our plan to build relationships with schools and universities to widen understanding of the implications of SCD for pupils and students, and ensure that they are afforded the appropriate support mechanisms to continue their education.

There are 15,000 people with SCD in the UK and 1,200 in Greater Manchester. Over the pandemic we have slowly and steadily started reaching more people outside Manchester, and also spent time building our online profile. The last 18 months has given us breathing space to build our relationships with the NHS via buzz Manchester Health & Wellbeing Service and blood and organ donation teams, and time to really think about how we work with people in the future. It is an exciting time for us, and we expect to work with more people across the UK in the future.

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