Sickle cell nursing workforce project: Overview and call for evidence
Introduction and background: One of the clear findings of the sickle cell care inquiry conducted by the Sickle Cell Society and the APPG on Sickle... Read More
CAMPAIGNING
Our Campaigning work. In this section :
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Sickle Cell Nursing Care Report (November 2023)
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No-One’s Listening Report
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All-Party Parliamentary Group on Sickle Cell and Thalassaemia (SCTAPPG)
2023 Sickle Cell Nursing Care Report – ‘The Difference Between Life and Death’
READ 2023 SICKLE CELL NURSING CARE REPORT – THE DIFFERENCE BETWEEN LIFE AND DEATH
Following on from the care failures highlighted in our 2021 report, ‘No One’s Listening’, we have taken a deeper look at sickle cell nursing care. Our findings show the need for vastly more resources, training and support in this critical area of care. Our report highlights that not only is no-one listening, but that lives are still being put at risk.
No-One’s Listening Report
READ THE NO ONE’S LISTENING REPORT
We released No-One’s Listening on 15 November 2021. The report highlighted avoidable deaths and failures of care for sickle cell patients.
Since the report, we have been busy campaigning for better care and outcomes for sickle cell patients. There’s more about those activities lower down on this page, as it is related to our work on the All Parliamentary Group on Sickle Cell and Thalassaemia – who was co-author on the report.
The All-Party Parliamentary Group on Sickle Cell and Thalassaemia
The All-Party Parliamentary Group on Sickle Cell and Thalassaemia (SCTAPPG) aims to be the voice in Parliament of Sickle Cell and Thalassaemia patients and their families. We campaign on multiple issues, including patient experience and workforce. Members achieve this aim by engaging with parliamentary colleagues, the government and health professionals to raise awareness relating to the conditions and needs of patients.
About the SCTAPPG
The All Party Parliamentary Group on Sickle Cell and Thalassaemia (SCTAPPG) was founded in December 2008 to keep Sickle Cell and Thalassaemia at the top of the political agenda, and to ensure that policy-making remains patient centred. The Group brings together MPs and Peers from across the political spectrum to debate key issues and campaign together to improve Sickle Cell and Thalassaemia services.
The SCTAPPG holds regular meetings and campaigns on a number of vital issues including patient experience, educating health professionals and developing clinical networks.
If you would like to get in touch with the SCTAPPG, please contact the Sickle Cell Society’s Parliamentary Officer, Seyi, by emailing: seyi.afolabi@sicklecellsociety.org
Reports
One Year on from ‘No One’s Listening’ – the Sickle Cell & Thalassemia APPG report into Sickle Cell healthcare in the UK
On 15th November 2021 the Sickle Cell and Thalassemia All Party Parliamentary Group released a parliamentary report seeking to capture the reality of Sickle Cell... Read More
Sickle Cell & Thalassemia APPG holds Annual General Meeting in Parliament
Sickle Cell & Thalassemia APPG holds Annual General Meeting in Parliament on Wednesday 22nd July 2022. New Chair and Officers elected. New Chair is Janet Daby... Read More
‘No One’s Listening Report’ Explained
Join us and the Give Blood Spread Love project on Monday 17th January at 6:30pm for our online event ‘No One’s Listening Report’ Explained. On... Read More
Westminster Hall Debate
Treatment of Sickle Cell We were delighted that Rt Hon Pat McFadden MP (Chair of the All-Party Parliamentary Group for Sickle Cell and Thalassaemia) was... Read More
No One’s Listening – A Report
MPs call for urgent changes to sickle cell care after inquiry finds “serious failings” Report published today (15th November 2021) following inquiry into avoidable deaths... Read More
Westminster Hall Debate
Janet Daby MP Speaks on Sickle Cell in the House of Commons
Vice Chair of the Sickle Cell and Thallasaemia All-Party Parliamentary Group, Janet Daby MP, speaks about the cost-effectiveness of free prescription charges and asks Secretary of State for Health and Social Care, Rt Hon Matt Hancock MP to review the current prescription charges.
The APPG meets four times a year to discuss priorities and to hear from expert speakers and service users. We also have our AGM where we elect our officers and plan for the year ahead. Click here for more information.
SCTAPPG Officers meet regularly throughout the year, make decisions on activity and policy direction for the Group, as well as being champions for Sickle Cell and Thalassaemia care in Parliament. Click here for more information.
The All Party Parliamentary Group has members who support the work of the Group. Read our page for a full list of SCTAPPG members. Click here for more information.
Read the APPG’s income and expenditure statements detailing how much income we received and how much money we spent and find contact details for the Chair and Secretariat. Click here for more information.
Sickle Cell Society Newsletter
Keep up to date with the latest Sickle Cell Society Newsletter’news, events and reports via the Sickle Cell Society (click here)
The Secretariat to the All Party Parliamentary Group on SCTAPPG is provided by the Sickle Cell Society.
This is not an official website [or feed] of the House of Commons or the House of Lords. It has not been approved by either House or its committees. All-Party Parliamentary Groups are informal groups of Members of both Houses with a common interest in particular issues. The views expressed in these webpages are those of the group.
