Last week saw three new reports and a Panorama broadcast setting out concerns about the tragic failure of care for people with learning disabilities, and sadly these concerns are anything but new. Where did they begin to emerge? Was it with the death of Connor Sparrowhawk in the care of Southern Healthcare in 2013 and the three subsequent Learning from deaths reports? Or the Panorama investigation into the experiences of people with a learning disability living at Winterbourne View in 2011?
Sadly not. Before that, there was the government’s Six lives report in 2009, following on from Mencap’s Death by indifference in 2007. Skipping back a few decades, as far back as 1969 Brian Abel-Smith led an inquiry into the abuse of people with a learning disability at Ely Hospital. There have been many other local and national reports and investigations over the lifetime of the NHS. Time and again, the health service has been shocked to discover its institutional failure to adhere to the core values of ‘respect and dignity’, ’improving lives’ and ‘everyone counts’.
After the first Learning Disabilities Mortality Review progress report last year, I wrote a blog setting out two hypotheses that might explain our repeated failure to live up to promises. One was the concept of ‘policy overshadowing’, where more time and energy is spent on what’s likely to be seen as a high priority by the public at the expense of lower profile or less popular priorities. The other was the apparent absence of any meaningful focus on measures assessing the equity of outcomes for different groups of service users.
I returned to that point writing on the 2019/20 operational plan for the health service, in which NHS leaders were exhorted to strain every sinew to deliver financial and access targets, with barely a mention of outcomes or experience for patients.
No wonder we see these themes repeated. What change is needed, at a systemic level across the NHS, if we are not to read yet another similar report next year?
Not learning from history
Last year we also published a collection of essays about learning from history when it comes to health care. Called Doomed to repeat, they explored a number of themes using case studies from across the health service.
Many of those themes apply when it comes to ensuring good outcomes for people with a learning disability.
1. Avoid the temptations of the grand plan
We warned of the need to “beware optimism bias and pressure for quick results”. The Transforming Care programme set up by NHS England in 2015 (the latest national attempt to respond to the above reports) was launched at the height of one of the most turbulent periods of the NHS’s history, with growing financial and operational pressures across all services and significant structural change. Delivering Transforming Care fell well down the priority list for many systems.
2. Really listen to the public
While I argued strongly in my essay for NHS leaders to engage with the public to understand the issues that concern them, I also said that engagement was a two-way construct, and leaders ought to be able to explain their priorities to the public too.
Individuals and families of people with learning disabilities have taken to social media with anger and aplomb to set out the case for change. Too often, reports have highlighted the failure of NHS-funded services to listen to the views and experiences of families. A constructive partnership between health professionals and families can help create the social movement needed to shift priorities for society as a whole.
3. Work with the people who deliver services
Many of the reports on the care of people with learning disabilities have highlighted staffing issues as a key factor, whether that be absolute staffing numbers or the skills of staff in post. NHS England themselves have said that “we can design innovative new care models, but they simply won’t become a reality unless we have a workforce with the right numbers, skills, values and behaviours to deliver it”.
When it comes to the needs of those with a learning disability, it is critical that we don’t just focus on staff in specialist services, but on staff across the NHS. They need the skills and support to adapt their practice appropriately to provide care and treatment for the full spectrum of physical and mental health needs that people with a learning disability may experience.
And it is not just about ensuring that staff have technical skills. The culture in which staff are working needs to enable them to take on board the holistic needs of individuals – their wants, needs, hopes, fears and basic human rights. Although periodic inspection and visiting (whether by regulators or commissioners) has a place, it cannot replace governance and leadership from within an organisation.
4. Ensure that plans are effectively backed up by funding
Services for those with a learning disability and with the most profound needs are expensive. They often require intensive staffing, and adaptations to the environment. But experience has shown us that in this area we can spend a lot of money very badly.
On a more positive note, however, we are also seeing a push towards personalisation and personalised budgets. Working with individuals and families to develop truly personalised care might offer an opportunity to gain a significantly greater return on investment, and truly transform care.
The future can be different
We are where we are. We cannot change history, however ashamed we are of it. But we can, if we are really motivated to do so, stop ourselves repeating it. We owe it to the individuals and families whose stories we have heard, and to those who have remained unheard, to do so.
The Nuffield Trust will be returning to the theme of ‘learning from history’ in our future work programme. We will also be exploring ways in which existing data can be routinely used to shine a light on the outcomes for vulnerable groups. Through our work, we hope to help leaders and staff across the NHS to create a better future.
*The three reports from last week that Helen refers to are: the Learning Disability Mortality annual review, the CQC’s review of restraint, prolonged seclusion and segregation for people with a mental health problem, learning disability or autism, and the Children’s Commissioner for England’s Far less than they deserve report.
Buckingham H (2019) “Yet another case of history repeating”, Nuffield Trust comment.