Learning Disability Today
Supporting professionals working in learning disability and autism services

New NHS taskforce and grant-funded initiative to improve inpatient experience for autistic children/teenagers

New NHS taskforce

The taskforce will aspire to: make a rapid set of improvements in care – over 18 months – but starting immediately, and agree a set of recommendations for next steps.

The NHS chief also announced that Anne Longfield OBE, Children’s Commissioner for England, will chair an independent oversight board to scrutinise and support the work of the taskforce. “Research published by my office earlier this year found that far too many children are stuck in hospital for months or even years when they do not need to be there”, she says. “I am pleased that this taskforce has been announced to change this unacceptable situation, and I am delighted to Chair this Independent Oversight Group to amplify the voice of these children and their families, scrutinise progress and hold the system to account.”

“Being admitted to hospital is a daunting experience for anyone, but for autistic people it can be even more intimidating because they can struggle to have their needs understood.”

The Children’s Commissioner and her board will be given wide-ranging scope to track progress and propose rapid improvements in existing services, examine the best approach to complex issues such as inappropriate care, out of area placements, length of stays and oversee the development of genuine alternatives to care, closer to home. 

Enacting the NHS Long Term Plan

The NHS Long Term Plan sets out an ambitious programme to transform mental health services, autism and learning disability; with a particular focus on boosting community services and reducing the over reliance on inpatient care, with these more intensive services significantly improved and more effectively joined up with schools and councils.

The NHS Long Term Plan is already committed to expanding access to services, creating more crisis alternatives, developing new models of care for young adults, and ending the so-called ‘cliff edge’ that can exist when 18 year olds transition to adult mental services. Alongside treating acute conditions, the Plan commits to delivering a £2.3 billion funding injection for community mental health services, as well as record-high investment in children’s care, to provide care for 345,000 extra young people and more than 370,000 adults with severe mental illness.

Specialist taskforce delivery teams will be made up of doctors, nurses, psychologists, psychiatrists and other medical professionals. The group will be asked to consider the best way to deliver compassionate care for acute need – including reviewing independent sector and NHS provision – including giving nurses and other staff the right clinical expertise and managing issues like seclusion and segregation in inpatient settings.

Claire Murdoch, NHS mental health and learning disabilities director, said:

“Children and their families living with autism, a learning disability or mental ill health know the daily challenges for mind and body and are entitled to expect the absolute highest quality care and safety, which our taskforce will help to deliver. I’m pleased that the new oversight board, led by the Children’s Commissioner, will bring to bear important expert scrutiny and pressure on the NHS, councils, the education system and others, to make sure young people, their carers and relatives get the right care at the moments they need it most.”

Jane Harris, Director of External Affairs at the National Autistic Society, said:

“This new taskforce is a welcome step which could help end the scandal of autistic people being stuck in mental health hospitals. We continue to hear disturbing stories of autistic children and adults being detained for long periods of time, miles away from their family – and even overmedicated, inappropriately restrained, and kept in isolation. In fact, in recent years the number of children on the autism spectrum or with a learning disability reported in these hospitals has doubled. If you’re autistic, being in hospital can be traumatic in itself – let alone in these circumstances.

“We are pleased that their calls are being heard but we’ve lots of promises before. This time, it has to lead to good community services in every area of the country, from professionals who understand autism. And there has to be plans for autistic adults, who are also stuck in this situation. We will be ready to work with the new taskforce in whatever way we can to make sure it makes a difference to autistic people and their families.”

Grant-funded collaboration between charity and NHS trust 

News of the new taskforce is not the only initiative announced this past week to improve the experience of autistic children/teenagers in inpatient settings. Young people from the charity Ambitious about Autism are to lead a 12-month project aimed at improving the experience of autistic patients in hospitals across England. 

The charity has been granted funding from the Health Foundation to carry out the work at Whittington Health NHS Trust – with the aim of sharing its results with NHS teams across the country.

There are around 700,000 people on the autism spectrum in the UK and many face health challenges. However, according to research by the National Autistic Society, most autistic people and their parents feel that doctors don’t make changes to meet their or their child’s needs. Meanwhile, a study in Sweden, peer reviewed by the British Journal of Psychiatry found that the average age of death for a person with autism was 54 years.

Improving experience

Ambitious about Autism’s work will involve carrying out a review of complaints and incidents involving autistic patients at Whittington Health NHS Trust, as well as commissioning surveys of autistic people, their families and healthcare professionals to better understand how to improve patient and staff experience. It will be led by a panel of young autistic people from north London who will meet regularly to feedback their experiences of accessing healthcare. It is hoped the research and recommendations resulting from the project will create a blueprint of best practice that can be shared across hospitals in England. 

Ambitious about Autism has been working with the Whittington Health Trust for several years on projects aimed at improving the experience of young autistic patients in the paediatric areas of the hospital. As part of the partnership, Whittington Health has just launched a new section on its website designed specifically for children and young people who have autism or other learning disabilities. Local young people who have autism helped to develop the pages which include visual stories and videos to help prepare young people for a visit to hospital. The resources provide information about going to hospital, what to expect when you get there, communicating support needs to healthcare staff and a glossary of terms.

Jolanta Lasota, Chief Executive of Ambitious about Autism, said:

“Being admitted to hospital is a daunting experience for anyone, but for autistic people it can be even more intimidating because they can struggle to have their needs understood. Social and communication differences can mean that autistic people find it more difficult to discuss medical problems – which can lead to serious health risks if not picked up by healthcare professionals.

“Understanding and tackling these barriers is key to solving this serious problem, and we are very grateful to the Whittington Health NHS Trust for their commitment to increasing understanding and improving practice on behalf of autistic patients. We also thank the Health Foundation for funding this work, which we hope will improve best practice in NHS Trusts across England.”

Michelle Johnson Chief Nurse and Director of Allied Health Professionals at Whittington Health NHS Trust, said:

“‘We look forward to continuing to work in partnership with Ambitious about Autism and to further collaborating with some of the local young people with autism who use our services. We are committed to improving the experiences and opportunities for our young patients who have autism.”



Recruitment is now open for the panel of autistic young people who will lead Ambitious About Autism’s project. Any autistic young person aged 16-25 from the boroughs of Camden, Islington, Barnet, Enfield or Haringey can apply. Find our more here: https://www.ambitiousaboutautism.org.uk/age-16-25/health-panel

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