SOLACE SG is a voluntary group working to improve the quality of life for people living with Sickle Cell and Thalassemia. You can help us by attending our monthly gatherings and becoming a member.
SOLACE’s main objective is to improve the quality of life of those patients living with sickle cell and Thalassemia in Hackney, not excluding every patient attending sickle cell services at the Homerton hospital from other boroughs.
We believe in a holistic approach to the care and management of sickle cell with specific focus on improving quality of life (QoL).
SOLACE was found in early 2016 after the transformation of the existing patient support group which had existed for some years. Sickle cell patients locally, voted to appoint new members of the Board in 2016 in a view to transform the objectives of the group.
The new leadership has focused on building on the legacy of supporting and advocating for patients living with sickle cell in Hackney.
Things we have achieved to date
We have recruited into all Board roles and currently have an effective board structure.
We currently have board development days to improve leadership and management skills of the board.
We have successfully held monthly patient support groups since early 2016 and are currently ongoing. Our minutes can be found here (insert link)
We have a patient membership structure with provision of membership cards and access to discounts in local restaurants and cafes using membership benefits.
We have made a number of applications for grants and bids to obtain funding for holistic and alternative therapies for our patients.
We have a bank account and a treasurer and vice treasurer who manage the financials of the group.
We have strong links with our national sickle cell charity with support from their board on steering the group forward to achieve similar objectives.
We are members of the City & Hackney Clinical Commissioning Group (CHCCG) Board and have the opportunities to present our plans and challenges directly at meetings to commissioners.
We work closely with our clinicians to improve the experience of our patients. For example, we would request clinical audits to be carried out at A&E to audit waiting times of patients from time of arrival to time of treatment.
We have effective out-reach and engagement levels with several organisations who we believe can support us with improving the lives of our patients.
We secured an office space for the group to use as a space to raise any service or care concerns they have, seek advice and information, meeting venue for our board members to plan way forwards and for any general purposes that support the purposes of the group.