The publication of the Timms Review marks an important moment in the future of Personal Independence Payment (PIP), with the review concluding that the current system is not fit for purpose. We welcome the review's recognition that significant change is needed and look forward to continuing to contribute to the next stages of reform.
Thank you to everyone who shared their experiences as part of our survey on the Timms Review of Personal Independence Payment (PIP). Your feedback helped ensure that the experiences of people living with MPS, Fabry disease and related conditions were reflected in our formal submission to the review.
Our response highlighted the vital role PIP plays in supporting independence and quality of life for people living with rare, progressive and complex conditions. We shared evidence from our members showing that:
rare diseases and fluctuating symptoms are not always well understood within the assessment process;
people often face repeated assessments and challenges proving the impact of lifelong or progressive conditions;
specialist medical evidence is not always given appropriate consideration;
the current process can have a significant emotional impact, with many members describing it as stressful, exhausting and distressing.
Our submission also called for:
greater recognition of rare, progressive and fluctuating conditions;
more consistent and person-centred assessments;
stronger use of specialist clinical evidence;
fewer unnecessary reassessments for lifelong and progressive conditions.
The findings of the Timms Review reflect many of the issues our community raised. We are grateful to everyone who took the time to contribute and share their experiences. Your voices have helped strengthen the case for a fairer, more compassionate system that better recognises the realities of living with a rare disease.
We look forward to continuing to work with government and other stakeholders as reforms develop, ensuring the voices of people living with MPS, Fabry disease and related conditions remain at the heart of future changes.
Read our full response to the Timms Review.
