Open Letter to Jeremy Hunt MP

NDTi recruit, train and support family carers and people with a learning disability and/or autism to be Experts by Experience on care and treatment review panels across the South Region.

At a recent training event there was concern about the future of the Transforming Care programme. The Experts by Experience, who have conducted over 1200 reviews, wanted to ensure their views were heard.

This is a copy of their open letter to Jeremy Hunt MP:

Thursday 17th May 2018

Ref: JC/PAR

The Rt Hon. Jeremy Hunt MP

Secretary of State for Health and Social Care

Department of Health

Richmond House

79 Whitehall

SW1A 2NS

Dear Secretary of State,

Re: Possible changes to funding and support for Care and Treatment Reviews, Transforming Care

In a recent meeting between our group of Experts by Experience with members of NHS England, we learnt that the learning disability Transforming Care programme is due to end in March 2019. As a result, there is uncertainty over what support will remain in place for Care and Treatment Reviews (CTRs) / Care Education and Treatment Reviews (CETRs).

Whilst we are pleased to hear that C(E)TRs will continue, we have grave concerns - about how changes in funding and support will affect patients and potential patients through any loss of regional roles, support from the Commissioning Support Unit, who organise and book the C(E)TRs and the support for Experts by Experience. Our concerns are grouped under headings “Impact on people”, “Impact on systems and costs” and “Impact on impartiality” in appendix a).

Currently, it is possible to guarantee that C(E)TRs are carried out by an independent panel of people which importantly includes an Expert by Experience, who is a person with a learning disability or autism or a family carer with lived experience of services. Together with the rest of the panel they ask key questions and make recommendations that improve the quality of care received in hospital, encourage progress towards appropriate discharge to sustainable supported provision and often lead to improvements in safety, care and treatment.

Our experience leads us to believe there are serious risks in dismantling the present system and we want to help ensure full consideration is given to these while planning changes. Dangers include:

• People being held in hospitals for longer than needed because some commissioners lack a clinical background and can’t make an effective challenge to the responsible clinician without support from the C(E)TR panel
• Loss of the important voice of people with learning disabilities and families in the C(E)TR process- which has been shown to have a positive impact
• Changes to regional structures that would leave a lack of oversight, focus and quality assurance
  

We believe that any decision to reduce support for this important work goes against the principles of the Transforming Care agenda, which is yet to fully achieve its ambition – making sure people receive the best support, in the best place possible and having opportunities to live the life they deserve. We are also concerned that this decision might be made without hearing from and involving those who would be affected by the change.

We believe that compared to the human and financial cost of people being inappropriately placed in hospitals or discharged without suitable personalised support, the cost of sustaining the present system of C(E)TRs is slight.

We ask for clarity around the changes and would welcome a meeting with you to further discuss our hopes and concerns. We look forward to your response

Yours faithfully,

Jill Corbyn, Learning Disability Development Lead, NDTi

On Behalf of the Experts by Experience group, NHSE South

Cc. Simon Stevens, Chief Executive, NHS England
Ray James, National Learning Disability Director, NHS England

To read the letter and List of Concerns in full please click here

More information on CTRs: https://www.england.nhs.uk/learning-disabilities/care/ctr/

More information on Transforming Care: https://www.england.nhs.uk/learning-disabilities/care/