All-Party Parliamentary Group on Sickle Cell and Thalassaemia

All-Party Parliamentary 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.

The SCTAPPG has recently published a report into the institutional failures of Personal Independence Payment (PIP) for those living with sickle cell disease and thalassaemia.

UPDATE

We are pleased to announce that the report has resulted in extended dialogue with the government. The SCTAPPG, with its Chair Rt Hon Diane Abbott MP, have held a meeting with Esther McVey, Secretary of State for Work and Pensions; Sarah Newton, Minister of State for Disabled People and DWP officials who have reacted positively to our recommendations and we look forward to working with them to enact change.

In addition, our patron, Lord Boateng has looked to apply pressure to the government in the Lords with numerous interventions outlining the need for change. The SCTAPPG are scheduled to meet DWP officials in order to overhaul the existing knowledge base on sickle cell and thalassaemia. This we hope in the long run will translate into assessors having the adequate understanding of sickle cell disease and thalassaemia, so henceforth they can make informed decisions on a claimant’s case.

Thank you to all those who completed our PIP survey and enabled the production of this report. You can follow the progress of the report at www.sicklecellsociety.org/sctappg/

You can read about it by clicking on the image below or by clicking this link.

Meetings and Events

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.

Officers

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.

Members

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.

Transparency

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. 

SCTAPPG Newsletter

Keep up to date with the latest SCTAPPG news, events and reports via the Sickle Cell Society (click here) and UK Thalassaemia Society newsletters (click here). 

The Secretariat to the All Party Parliamentary Group on SCTAPPG is provided by The Sickle Cell Society and U.K. Thalassaemia 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.