Comments from LEAP members

Ian, family carer and CECiLiA LEAP member told us why he takes part in our project:

“The C(E)TR programme has been developed to prevent unnecessary hospital admissions for people with a learning disability and autistic people. 

C(E)TRs are complicated and involve people from a range of specialities and backgrounds including the person receiving care and support, their health/care support providers, experts by experience who may be parents/family carers and/or appointed advocates. All those involved attend C(E)TRs to work together to try and best meet the needs of the person receiving care.

The CECiLiA project has been designed to make sure that C(E)TRs are carried out in accordance with NHS Policy but most importantly, to check that they make a difference to those in need of help.

CECiLiA is a project that utilises people with lived experience, including carers and family members, to check the standards of C(E)TRs being delivered, to highlight examples of poor (and good) practice, and feedback this learning to effect positive change.

The key questions we need to ask are:

•  Is the C(E)TR following national policy guidelines?
• Have the right professionals been involved?
• Has the person and their family members/advocates been consulted and involved in the process appropriately?
• Have the person’s rights been upheld?
• And most importantly, what difference did the C(E)TR make?

Many of those involved with this research, like myself, are parents and carers who have personal experience of C(E)TRS. They take part in the CECiLiA research project as Lived Experience Advisory Panel members and work together to help improve understanding, drive up standards and share learning for the common good.”

Lauren, National Autistic Society LEAP member told us what makes project CECiLiA important to her:

“I’ve actually found myself in a situation recently where I’m realising more and more how important the findings of this research might be to my future and the changes made to CETRs could be life changing / saving for me especially as things continue to deteriorate and my support needs are not able to be appropriately met.

I would love to think that one day after this research and the recommendations & changes are hopefully implemented that Autistic people and people with a learning disability can feel that CETRs work as they should, are useful, effective, efficient and will make sure the most appropriate actions / supports are carried out to safeguard their wellbeing, best interests, safety and future, in the least restrictive ways, which sadly is not currently happening and when we’re living in a world with such a mismatch of training levels and understanding this can put Autistic people at huge risk especially if they fall into crisis or experience placement breakdown.”