Sarah Offley, Chief Officer, Dudley Voices for Choice
Transforming care programme was established by the government in response to the Winterbourne review findings. One of the changes implemented was that every person who was at risk of admission to secure services would have a Care and Treatment Review or a Care, Education and Treatment Review. The review was to make sure that every opportunity and community service had been considered prior to a secure setting. This was the hopefully the start of the attempt of cultural change to make sure that when supporting people in crisis that the secure setting was the final option and not the first.
When CTR’s and CeTR’s were first set up it was agreed that independence from provision was of high importance and that every panel should include the following:
• An independent chairperson
• An independent clinician
• An Expert with lived Experience
• The patient
• The patient’s family
In addition, there would be:
• The social worker
• The commissioner
• An independent advocate
• Provider of any service the patient had at the time of the CTR/CeTR
All the panel had their own skillset and would be able to look at the care received to date with a transparency that allowed them to critically view the care offered to date and challenge the plans if it was required.
As a self-advocacy charity, we very much wanted to support people to be experts with lived experiences and sit on the CTR/CeTR panel if they wished too. Supporting the person was not as easy as we thought it would be, there was much to consider including, pastoral care, an understanding of the services available, an understanding of the CTR/CeTRprocess and a trusting relationship with a person that could be used to debrief after the CTR/CeTR. As a team we have worked as critical friends on independent panels so had knowledge and experience to do this but was unsure as to how the role of pastoral care would work with our experts with lived experience.
Charli had been a part of another project we were working on when she asked about the role of expert with lived experience on panels. As a young person who had lived experience, she had all the attributes necessary to do the role, we just had to make sure we could deliver what she needed pastorally. The following is from Charli herself as she shares her experiences of living and working as an expert with lived experience.
“I started out as an Expert by Experience for CeTRs after I started working on the keyworker pilot locally and wanted to be involved in more system change work. As an autistic ex-CAMHS inpatient, a lot of the work I do is around admission avoidance, admission reduction and system change; for me, CeTRs are a key aspect of this in that they provide that individual response often at points at crisis. If we can keep people in the community safely and in their best interest, the system should be trying to find alternatives and it's critical to me that someone with lived experience is part of that, to untangle all the different factors and to provide context and a different perspective for professionals. I ask questions that the system is not often focused on, from the person's hopes, wishes and desires, to understanding different ways different traits and communication styles could be presenting.
If I was talking to a citizen with lived experience considering supporting CeTRs or CTRs, I'd say that looking after yourself is crucial, but this is such an important role because the people we are supporting deserve to have someone like them on that panel making such hard and big decisions. We become part of someone bigger than ourselves, as cliche as it might sound.
Sometimes we have to make really difficult choices that we might not like but that feel like the right thing, and it can be hard to reconcile that - but that's a big part of why debriefing with someone you trust and who is independent is really helpful for me. Knowing I have a space to go to afterwards where I can get everything out as well as having a sounding board for if I'm anxious something has gone wrong or something needs to be followed up is all important for me as the work can sometimes be triggering or might weigh on me for longer if I don't get it out.”
From starting off supporting a project as an expert with lived experience Charli has gone on to work for British Human Rights (BHR), NHSE in several different roles and will be a published author in December. Charli is our only expert with lived experience now who works independently on CTR/CeTR’s. We have learnt a lot and continue to learn from the way we work together. After doing a little research we found that many experts with lived experience are family members, whilst writing this I can understand why, it takes a person with real strength, reflection, and bravery to put themselves in potential risk of revisiting traumas they had worked hard to live with. Whilst reflecting with Charli we have asked the questions ourselves as to how we can mentor more experts should they wish to be a part of CTR/CeTRpanels of the future. Together we have developed a training pack that we will be trialling with people who have an interest, we believe with a real investment of time and mentoring more experts will be able to use their experiences and trauma to shape future lives and services for others.
Comments