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Personal Independence Payments (PIP) Survey

People affected by Osteogenesis Imperfecta may deal with the Government welfare system to assist with the extra costs associated with the condition. Before 2014, this assistance was received through a Disability Living Allowance (DLA), but since then a new welfare programme of Personal Independence Payments (PIP) has been introduced.

The process involves rigorous assessments that many of our members and supporters have faced difficulties with, and as your patient support group, we wanted to do something about that.

We devised a survey which we received 71 responses too.  You can read the results in this in our feedback document PIP-Feedback-Survey-Analysis-2019.pdf

We have also created a “Applying for PIP” factsheet which you can download on our Financial Support page

Trustees of the Society were delighted that Lord Shinkwin was able to assist with suggestions for meetings where we were able to present the results to government officials.  Thanks to everyone who took time to complete the survey this has lead to some positive outcomes.

We were invited by CAPITA to help feed into a process to devise and design a Conditions Insight booklet about the condition of OI.  This booklet is now available to CAPITA assessors.  Further to this we have also been invited to sit on a special scoping group along with other leading Charities.  This group also involves representatives from the Department of Work and Pensions.

A massive thank-you to everyone who took the time to complete our survey, your responses are invaluable and your voice is being heard.