Care Provider Questionnaire
As we are a national charity, the Advice Service often sees first-hand the disparity in the level of care and support that is provided across the UK to our members, from care and support agencies. With this is mind, we would like to ask for your feedback on your experiences in this area.
We have devised a five minute questionnaire (longer if you have a lot to say!!!) asking you some targeted questions about the quality of support you currently receive, or have received in the past.
The questionnaire is not for people who use their direct payments to recruit their own personal assistants; rather it is targeting those of you whose care is provided by agencies, as part of your care plan.
We are interested in both the good and not so good experiences, to help us form a picture of what is happening nationally. It would be great to draw on real life situations, to help us to advocate on your behalf, in order to improve future services.
Research & Collaboration
Research is an integral part of the history and future of Bardet-Biedl Syndrome UK and enables us to improve the lives of those with the syndrome through better management and treatments and in understanding the underlying causes of the syndrome.
As a charity, we have been primarily patient support focused and are only just starting to consider our role with regards to research and collaboration with the scientific and medical professionals across the globe. Our aim is to engage with rare disease research, to share experience and knowledge of our genetic condition with others and network with similar organisations. Most importantly, we wish to share and publish updates regarding research to our members and patients.
BBS UK has developed its research policies to support us in future collaborations and have a comprehensive Research Policy and Guidelines, Scientific Advisory Board Policy and Research Statement and Pharma Policy which can viewed or downloaded at the link below.