Ray James is the first ever national director for learning disability at NHS England. He talks exclusively to Sean Kelly about his vision with a community focus
Ray James has a crowded in-tray. Among many other issues facing the first national director for learning disability at NHS England are the Transforming Care programme to reduce the number of inpatients in assessment and treatment units, worsening mortality rates and a workforce crisis.
Shortly before this interview, a friend told me she felt sorry for James. She is the mother of a young man with autism and a learning disability.
Why did she feel sorry for him? Because, she said, he is the fall guy for Transforming Care, the national programme with an ambitious target of halving the number of people learning disabilities and/or autism living in inpatient settings such as assessment and treatment units (ATUs).
Transforming Care is entering its third and final year seemingly a long way from achieving this. As the lead officer for the final year, my friend suggested, James’ role will be to carry the can.
He is ready for the charge.
“There has been about a 16% reduction in the number of inpatients over the past three years,” he says. If this much change happened anywhere else in the NHS, “people would be trying to learn from it”, he says – although he agrees that there is “much to be done”.
James is progressing with the 2018-19 plan and promises major decommissioning of inpatient beds in the next year. Some parts of the country have already got the numbers down to the targets in Building the Right Support (the National Plan for Transforming Care) but James says that there is wide variation.
“There is about a five-fold variation in the level of bed provision per head of population. There’s about a 15-fold variation in the rates of admissions.
“So there is definitely more work to do but there are clear signs that things are heading in the right direction. Our challenge is not only about pace but also about reducing the variability.”
James is on secondment for two years (with a possible extension) from his post as director of social services at Enfield Council.
At the time he left the authority late last year, he says “there was an inpatient count of three people [with learning disabilities and/or autism] for a population of 325,000” and two of those three had planned move-out dates.
James gives lots of credit to staff in Enfield for this and is clear why he believes the system can change.
He thinks the frequent focus on inpatient numbers alone is too narrow.
“The programme is often judged in a relatively binary way about inpatient numbers … there are some other important strands as well,” he says. He mentions annual health checks and “the work we are doing around trying to learn from deaths” within the Learning Disabilities Mortality Review (LeDeR) Programme) as well as the STOMP programme, which aims to reduce the unnecessary prescription of psychotropic drugs (CL 31(2): 20-21).
“Fundamentally, I’d like more people with a learning disability to say that they are leading better lives and not in hospitals,” he says. “There might be all sorts of other kinds of metrics that people would look to but, for me, the headline is direct feedback from people about the quality of their lives and their experience.”
What needs to be done to get people out of ATUs and, crucially, reduce the numbers going in?
A priority will be “strengthening the capacity and capability of community-based services, in particular intensive support, crisis support, community forensic services and community learning disability teams”, he says.
This sounds like good news to the many who have been concerned by the reductions in precisely those services.
He also plans to link teams so they can support each other better. Can he transfer funding from inpatient to community services?
“Yes,” he says, adding the caveat that “you need the services to be functioning well in the community to be able to discharge people but also to support and avoid the admissions”.
So far, he says, NHS England has provided £10 million a year (over two years) to be matched by funding from local bodies. “That’s £40 million and I expect there to be a bit more signalled. I also expect us [NHS England] to be clearer about moving some of the money up front now rather than areas waiting,” he says.
He thinks some matters could be addressed in a better way. One is workforce supply and training. He promises “a particular effort around the support and care market to ensure that we’ve got people with the right skills and behaviours”. He wants staff who can provide positive behavioural support (PBS) and who can also, for example, challenge levels of antipsychotic medication prescribed.
Another area requiring attention is autism.
“I don’t think we have had a significant or a distinct enough focus on autism and understanding the issues around that” he says. “Of the children and young people in inpatient beds, 60% have a diagnosis of autism and no learning disability, so it is a very significant issue. ” However, he promises no more than “careful thought with people”.
He would like to test some alternative approaches: “What if we didn’t spend any money on a bed – what would we spend the money on? What if we were to invest earlier in parents – what might that look like?”
He considers a future in which parents, carers, support workers and teachers are all trained in PBS and support is much more consistent.
Making plans requires accurate data. However, James notes that there is some conflict between the Assuring Transformation data and mental health data, both of which are produced by NHS England.
“We are working at trying to improve the quality and consistency of that data,” he says, adding that there has been some “helpful constructive challenge” from others, including Chris Hatton, professor of public health and disability at Lancaster University.
The data is not as consistent and certain as he would like but “it is what it is”. Instead of spending energy defending it, he says, “I’d rather be talking to different stakeholders about what we do differently to improve people’s lives”.
Transforming Care is due to end in March 2019. James says he wants people to feel confident that “people with a learning disability or autism or both will remain a priority for the NHS”.
Transforming Care brought in care and treatment reviews (care, education and treatment reviews for children), where the family, agencies and an expert by experience gather to consider plans for a person with challenging behaviour and/or mental health problems.
Asked about their future, he says: “In the last six months, about four out of five care and treatment reviews have not led to an admission.”
Will they continue after March 2019? James says: “I can’t see any way in which they won’t, because of the impact that they are having.”
Given some of the things we have been hearing lately about unnecessary deaths, I wonder whether he thinks eugenics is still alive.
I tell him a story I heard recently of a nurse saying to another, about a man with learning disabilities: “Do you think he would rather be dead?”
James’ face shows distaste. “I find that abhorrent is the first thing to say. My learning from this is actually that it is experts by experience who tend to be the people who change hearts and minds in this space.
“If you are doing training about learning disability awareness, have you got someone with a learning disability involved in the training?”
He says that he knows involving this type of expert works because he has seen it happen.
Preventing unavoidable deaths
The STOMP programme has raised awareness of overmedication. Asked if there should be a similar programme
for constipation, which has led to tragic, unnecessary deaths, James adds respiration, pneumonia, dysphasia
and sepsis, all of which need more awareness.
The solution in his view is to reach mainstream health professionals rather than specialist services for people with a learning disability. Therefore, he plans to connect programmes to existing mainstream services rather than have separate projects.
“I would hope that the work that we are doing around learning from deaths might be one of the places where we get some evidence to help us prioritise,” he says.
James says he has “already influenced the national programme of work around sepsis to ensure that it is more sensitive and thoughtful about sepsis in people with a learning disability”.
Soon after the interview, the LeDeR Mortality Review was published, showing sepsis to be a significant cause of death.
One challenge for James is that he leads a national programme which is delivered in 152 local areas. He says it offers “a blend of high support and, where needed, high challenge”. Local decisions should be made locally, he believes. Nevertheless, he feels that he has the influence and authority he needs.
He describes a health organisation he visited which, after hearing the issues that he raised, decided that “changes in leadership roles” were needed.
Since the publication of the LeDeR Mortality Review, the challenges for James have, if anything, increased. There is a sense of shock within the learning disability world at the worsening life expectancy for people with learning disabilities and there has been some (albeit limited) coverage in the wider media. Learning Disability England has called for a mortality review board to be set up.
However, James remains positive.
“I am really enjoying getting stuck into this,” he says. “There is much to do but I am quite lucky to be asked to do something I care this much about at this point in my career, when I don’t need to be worried about any personal judgments or reflections on me and I can therefore be singularly focused on trying to do the right thing.”
Sean Kelly was chief executive of the Elfrida Society from 2001 to 2012 and is now a freelance writer and photographer.
Following this interview and the publication of LD Mortality Review (published 20th June) Ray James made a response – see https://www.england.nhs.uk/blog/leder/