Earlier this morning (13th April), the Health and Social Care committee examined the treatment of autistic and learning disabled people in today's society. 

The virtual meeting, chaired by Jeremy Hunt, heard evidence from two expert panels. The first made up of Dr Ian Davidson, Dr Ken Courteney and Ian Birrell; and the second of Sir Norman Lamb, Baroness Sheila Hollins, Dr Theresa Joyce and Professor Philip Fennel.

Journalist Ian Birrell, who is known for exposing the shameful treatment of people with learning disabilities and autism, began the discussion by giving powerful testimony of how the current system has failed countless families. He considers Beth’s story an ample example of how inpatient settings often worsen conditions rather than improve them, and questions why there are still more than 2,000 people in such settings, not getting the care they need.

When asked why these settings have been allowed to continue as they have been, he said: “Ultimately, we have a society which doesn’t respect people with learning disabilities and autism. This lack of respect leads to systemic failure and leads to the situation where thousands of individuals are having their lives wrecked and families are torn apart by the very system which is meant to care, support and help them.

“We know from the many cases of good practice that it doesn’t have to be like this. This is a systemic failure, it isn’t helping people and actually, people are far more productive, far better off, far happier and far better cared for with support in the community.”

Broad agreement that there needs to be more investment in community provisions

Throughout the meeting, community care was heavily emphasised and there was broad agreement that there needs to be more investment in community provisions. Many of the speakers referred to the care model used in Trieste, Italy. Their care system doesn’t use restraint and the average length of stay is just 14 days, a stark difference between the UK model which regularly uses restrictive intervention and has an average length of stay of five and a half years.

Dr Ian Davidson, Autism Lead at NHS and Royal College of Psychiatrists (RCP), said that they fully endorse many of the fundamentals of the Trieste model but are currently unable to offer a similar model due to a lack of funding for community care services. They also highlight that the Trieste model is proven to work for those with mental health problems, but not for those with learning disabilities and autism. 

Although the RCP say that community care should always be first choice, they refute the idea of closing all inpatient settings, arguing that they are needed in instances where the community cannot offer the necessary support. Instead, they say they are working towards good, strong community services and an “easy in, easy out” inpatient system with an integrated, person-centric approach. 

This person-centric approach aims to decide on a case-by-case basis whether the individual needs hospital treatment or not. The RCP say to not allow those with learning disabilities and autism admission to hospital would be “unlawful discrimination”.

When hospital care is essential, they agree that treatment times need to be shortened and the quality of care needs to improve. Dr Ken Courteney, Chair at Royal College of Psychiatrists Intellectual Disability Faculty, said: “What we are missing is the management of admissions. I have proposed to NHS England that we have a clinical contract; an agreement between community services and inpatient services about the purpose of the admission and what is going to happen while the person is in the inpatient service. Clearly outlining the accountability for the inpatient staff but also the community staff in order to facilitate the discharge pathway back into the community, because the community doesn’t always have the capacity to support people. This is what we really need.”

"Why do we try to treat people who have untreatable conditions?"

Ian Birrell emphasised that the structure of the system itself need to change, stating that it is geared towards treating mental health conditions, and not autism or learning disabilities, which are not treatable. He explains that the very act of going into the system makes it harder for individuals to get out, asking why we try to “treat” people in hospitals who have untreatable conditions. 

Dr Davidson admits that the situation is moving far too slowly, but insists that huge improvement is being made in diagnosing autism and learning disabilities. He says autism hubs are also starting to pop up across the UK, representing an important step forward that could help prevent admission.

Sir Norman Lamb built on this point, stressing the importance of early diagnosis and "getting it right for children". He says sorting out problems with transition is vital, as the largest number of admissions comes from those aged 18-30: "This has to be resolved, together with proper supported social care," he said. 

The former care minister also highlighted the importance of removing financial incentives, as many private institutions benefit by admitting and keeping patients in hospitals. He said: “I would give people the legal right to a personal budget, transferring the power from institutions to individuals and families to determine what care should be like for their family member. Care should be based around the needs of the individual, not based on the needs of an institution."

"Care should be based around the needs of the individual, not the needs of the institution" 

When asked to summarise what she would do to improve the healthcare system, Baroness Sheila Hollins said she would stop the focus on crisis intervention and "regulate commissioning, require commissioners to be trained and hold them to account to provide the right services in their catchment for people with learning disabilities and autism."

A special report on the treatment of those with a learning disability and/or autism is due to be released by the Health and Social Care Committee soon.