Improving lives and addressing abuse: Commissioning for change

This week, the CQC published their inspection report revealing abuse of women at Cygnet Yew Trees Hospital in Essex. History repeats itself, but after at least 70 years of repeated scandals ​“which must be learnt from” about the incarceration of people with learning disabilities and human rights breaches, perhaps the only reasonable emotions are rage or despair. Yet, I believe that we must accompany these with steely determination and clear actions. 

I hesitate even as I write this, as so much has been written before. So many inquiries, policies, agreements, plans, guidance, recommendations and reports. I had similar mixed feelings five years ago as I began to work as chair of the committee responsible for developing NICE’s guidance on the service model for people with learning disabilities whose behaviour challenges. I knew then, as I do now, that we needed action based on our existing understanding more than we needed further reports and recommendations. But I also recognised that the guidance provided the opportunity to identify and articulate how we can make lasting change to the service systems which have continued to fail too many people and their families. 

I believe that returning to NICE’s recommendations - and implementing them - can help us now.

Almost everyone who is in an inpatient service has a placement which is funded, usually generously, by the NHS. So, the very first and the most important set of recommendations NICE made were about commissioning:

1.1 Achieving change: strategic planning and infrastructure

Recommendations for local authorities and clinical commissioning groups

1.1.1 Local authorities and clinical commissioning groups should jointly designate a lead commissioner to oversee strategic commissioning of health, social care and education services specifically for all children, young people and adults with a learning disability, including those who display, or are at risk of developing, behaviour that challenges. 

1.1.2 Ensure that the lead commissioner: 

• plans and oversees joined-up commissioning arrangements 

• has in-depth knowledge and experience of working with children, young people and adults with a learning disability and behaviour that challenges, including knowledge of local services 

• plans services that take a ​‘whole life’ approach from early childhood onwards and enable smooth transitions. 

Joint commissioning and funding

Recommendations for the lead commissioner (acting on behalf of local authorities and clinical commissioning groups) 

1.1.3 The lead commissioner should ensure that budgets and other resources are pooled to develop local and regional services for children, young people and adults with a learning disability and behaviour that challenges. These should be pooled: 

• across health, social care and education and 

• with neighbouring authorities. 

In short, commissioning needs to be based on real understanding of people with learning disabilities who show behaviour that challenges, and to be joined up between agencies to avoid shunting costs or responsibility. Commissioning shouldn’t be a reactive, purchasing role. Instead, it must ensure that services are shaped by long term plans, based on people’s needs and are co-produced with people who use services and their families. 

Commissioning must be comprehensive. It shouldn’t just be about people in hospital, or just about people whose behaviour is viewed to be challenging. Instead the guidance makes clear that strategic oversight is needed for the commissioning of services for ​“all children, young people and adults with a learning disability” (my emphasis). Looking only at what goes wrong in hospital settings is like saying that jumping off a cliff doesn’t hurt, it’s just hitting the ground that’s the problem. We need to reshape support. We need to support people in ways that reduce the need for people to be admitted to hospital. The Guidelines outline how this can be done, including by: 

None of this is new, and much is already practised. But there is unacceptably wide variation between areas, for example in the reliance on hospital provision and availability of community-based specialist and intensive support services. 

The increasing fragmentation of commissioning accountability, including New Care Models, may present different challenges to ensure strong, well supported, highly informed, integrated and wholistic commissioning, but makes it no less essential. 

Getting it right for people with learning disabilities must be a critical commissioning priority. This requires national leadership and political will, translated into clear expectations which match the urgency of the issue, and support and remedies when actions fall short. 

Of course, the abuse of people isn’t simply caused by system issues. Lack of humanity, decency, leadership and of positive culture lie at the heart of abuse. But until we change the overall way that services are commissioned, planned and delivered, the outcomes for people won’t change enough. 

During the pandemic, the risks of abuse have increased for very many people with learning disabilities, including people living in hospitals. Good staff and managers have been under tremendous pressure and dealing with near impossible situations. The safeguard provided by close contact with people outside the service setting, whether family members, social workers, advocates or regulators has become more restricted.

But one of the positive lessons from the pandemic is that when there is political will, major change can happen rapidly. We already know so many ways to improve the lives of people with learning disabilities. We need to apply what we already know, backed up with just some of that same political will, for radical improvement to happen.