New interim National Clinical Director for Learning Disability and Autism Anne Worrall-Davies describes her priorities in the role and her background.

I’m delighted to write this blog for Learning Disability Awareness Week. I want to take the opportunity to tell you a bit about me, my role and some of the work I particularly want to focus on.

I’ve worked for 30 years in children and young people’s mental health as a Consultant Psychiatrist in community, early intervention in psychosis, inpatient and outreach settings. I began my consultant career as a clinical academic with a clinical job in paediatric liaison.

As service structures changed, I moved into a community multidisciplinary sector team. My research area changed to evaluating innovative models of care, one of which was the Bradford Child and Adolescent Mental Health Services (CAMHS) home treatment team.

I saw first hand the huge benefits it brought to young people and families, so when a CAMHS outreach service was commissioned in Leeds, I moved over to full-time NHS employment to be an embedded team clinician and help shape the new service.

I loved being out and about, working with young people in their homes and communities and supporting them and their families so that whenever possible, they didn’t need to be admitted to hospital. A colleague retiring meant that I moved to work in the young people’s inpatient unit. It was a time of great change, and I enjoyed helping to embed our new clinical model, aligning it with the national service specification that I’d been involved in writing as part of the CAMHS Clinical Reference Group.

At this point, having worked in most parts of the CAMHS pathway, I began to really understand how autistic young people and/or young people with a learning disability can fall through the gaps of mental healthcare, not quite ‘fitting’ service criteria, or not getting an adapted treatment model, and what the consequences for them can be.

It was also at this point that my professional and personal worlds came together: my younger son is autistic, has a learning disability and epilepsy. Late diagnosis, and services not meeting his needs, sadly meant that in his teens his anxiety and meltdowns became too much for all of us to manage safely, so he went to a specialist residential school. Things are much improved and we are all looking forward to him coming to live near us in supported housing next year!

I am passionate about co-production and am proud of how we use our programme’s lived experience advisors to guide and challenge our work. Living out our values is a theme in my family: my older son is training as a Court of Protection solicitor and my husband, after a career in global industry, is an expert by experience for care, education and treatment reviews (CETRs).

I am also passionate about reducing inequalities and improving the health of autistic people and people with a learning disability. LeDeR (learning from lives and deaths – people with a learning disability and autistic people) programme data have starkly shown us that people with a learning disability, especially those with epilepsy and from an ethnic minority background, die much younger than the general population, and half of all of their deaths are avoidable.

I want to highlight some of the work we have been doing to improve this situation. For example, we have raised expectations of NHS-funded providers to deliver for autistic people and people with a learning disability through the NHS Standard Contract 2022/23.

The recently published and refreshed NHS England CETRs include a comprehensive key line of enquiry on physical health. At the end of March 2023, 78% people with a learning disability have had their annual health check, exceeding the target.

Looking ahead, there are two publications on the horizon: Royal College of Psychiatrists’ Faculty of Intellectual Disability is drafting a physical health position paper; and the British Psychological Society Faculty of Intellectual Disability is finalising guidance to psychologists around supporting good physical health in those with a learning disability.

Recently, I met with Emily Cadman, a Consultant in Emergency Medicine, and Louise Sutherland, Senior Play Specialist, at St Mary’s Paddington Paediatric Emergency Department. Five years ago, a parent asked if she could do her Master’s degree in quality improvement in the ED; her child had good experiences on the paediatric ward but not in the busy emergency department.

The team embraced her offer; now, autistic children and those with a learning disability are ‘flagged’ on their health records so that on arrival, staff know and can take them to a quiet room and offer sensory resources and ensure quick triage. Children and families now feel confident and happy visiting the department.

I hope that you will be inspired to think what you can do as a person with a learning disability, a parent, carer, friend or professional to improve the physical health of people with a learning disability in #LDAW.