The Sickle Cell and Thalassaemia All-Party Parliamentary Group (SCTAPPG) 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/

The Report

Initial conversations took place regarding service users mounting concerns of the Personal Independence Payment (PIP) process at the SCTAPPG meeting on November 15th 2017. Both voluntary organisations shared that it was clear that the regularity of service user concerns coming through to helplines indicated a system that was failing patients and exacerbating the difficulties they faced. Discussions centred on the strongly held sentiment that service users believed that their condition, and the lack of understanding around it, from the outset put them at a disadvantage.

It was decided that the SCTAPPG go forward with this as a potential topic, and collect evidence to substantiate these claims. Furthermore, in the November meeting Baroness Thomas of Winchester echoed these concerns about the DWP and PIP failing patients with respect to access to benefits. She advocated a meeting with Sarah Newton MP, Minister of State for Disabled People. Marsha de Cordova MP, Shadow Minister for Disabled People seconded this and agreed to also attend the prospective meeting. The SCTAPPG through this report has endeavoured to capture those recommendations made at the November meeting and the voice of the membership of both the Sickle Cell Society and the UK
Thalassaemia Society.

The Report

You can read the full report by clicking the picture below or by clicking this link

For any queries about the report or to find out more information please contact the author Adam Lloyd at adam.lloyd@sicklecellsociety.org