Out of commission: What’s behind poor care for people with learning disabilities?

Sadly, it’s not a new revelation that people with learning disabilities are not receiving the quality of care which they should be from the NHS – something on which I have commented before. The State of Care report published by the Care Quality Commission last week highlighted once again the shortcomings of institutional care for people with the most severe learning disabilities and/or autism.

14 independent mental health hospitals of the 234 inspected by the CQC have been rated as inadequate and placed in special measures. After some high-profile institutional failures, such as the abuse of patients at Whorlton Hall exposed earlier this year, the providers and regulators of such care have, rightly, come under increased scrutiny.

But what about commissioners? So far there hasn’t been much emphasis on their role in preventing and addressing such systemic failures in care.

Transforming care?

An article in Community Care earlier this year raised concerns that the numbers of people with learning disabilities in inpatient settings were not being reduced in line with the expectations of the Transforming Care programme – put in place following the exposure of abuse at Winterbourne View in 2015. A principal aim of that programme was to help people with learning disabilities leave hospital to receive more care in the community.

This follows concerns from NHS Providers that a “lack of clarity” over commissioning responsibilities between CCGs and NHS England was a "barrier" to trusts when it came to improving the care for those with learning disabilities.

In January, the Long Term Plan set a revised target to reduce inpatient provision for people with learning disabilities and/or autism by 50% (against 2015 levels) by 2023/24 – which will require progress at twice the rate achieved to date.

Poor care, and poor care planning, can take a huge toll on individuals with learning disabilities and their families – as shown in powerful personal blogs on the subject.

So why is it so difficult to achieve progress, and what is getting in the way of commissioners meeting their obligations to people with a learning disability?

Why is this happening?

It is important to be clear that many of the people with a learning disability occupying hospital beds have incredibly complex physical and/or mental health needs alongside their learning disabilities – and that their needs are individual to them. Transforming Care strongly emphasises the expectation that each individual should have a single "care and support plan".

Meeting the needs of individuals in line with their care plan is likely to require at least two commissioners – the CCG and local authority – to collaborate. But when both health and local authority budgets are under significant pressure, the risk is that individuals are caught in the middle of funding arguments.

Looking after those complex needs – in any setting – requires staff who are both well-trained and who have the right values and approach to work with people with a learning disability and their families. In addition, there is a value in continuity in staffing, and the relationships that this enables staff to build with people and their families.

But there are well-rehearsed national workforce shortages across the NHS and social care, including very significant shortfalls in the numbers of registered learning disability nurses. If appropriately qualified staff simply do not exist in a local area, even the most skilled commissioner is going to find it difficult to commission local services for people with complex needs. The actions required to address those shortages are not ‘quick fixes’.    

There is the question of organisational focus. With CCGs held to account for many aspects of performance, the attention of the most senior leaders continues to be drawn to urgent care, elective care (including cancer) and financial performance. Progress on Transforming Care features a long way down most CCG performance reports, if it features at all.

This is not intended as a criticism of CCGs themselves. As I have suggested before, until the national performance dialogue starts to focus first and foremost on equity of outcomes for individuals, it is likely that improving the experiences of people with a learning disability will continue to stay low on the priority list. It’s not good enough that every time there is a scandal, the needle jumps, only to drop right back down again for the rest of the year.

The independent providers of inpatient services for people with a learning disability tend to sit outside the normal workings of the NHS. Of course, commissioners funding individual placements should ensure that the care they fund properly meets the needs of the people they serve, and providers have a fundamental responsibility to provide good care.

But, even with the current move to collaborative working, there is no one whose job it is, as a commissioner, to build a relationship with these organisations that looks at the overall quality care of provided, transcending the oversight of individual placements. No one has responsibility to support the organisation to improve, or to provide critical challenge.

What now?

The role of the learning disability commissioner isn’t easy. I know that – it’s a role I held myself for a number of years. And I don’t absolve myself from the failings described here. One might argue that individual commissioners are themselves being let down by the system in which they are working, and as a result the people for whom they are commissioning care are suffering.

It’s very easy to blame ‘the system’, but that system is driven by people. It will take concerted and sustained action by the people whose hands are on the wheel to get the shift in gear that’s needed to drive change.