When commissioning priorities meet clinical reality

Services for people with the most complex needs - learning disability, autism and challenging behaviour - remain in the headlines. This is largely due to the continued struggle to deliver on the ’Transforming Care’ plan to reduce hospital admissions.

It’s risky to put your head above the parapet when discussing this topic. But unfortunately, a combination of (understandable) emotion and politics is causing a real stasis in the system, and unless the issues are addressed, things will continue to be stuck. I’ve worked for 28 years with people with severe challenging behaviour and forensic needs, helping to develop and run large services across both the NHS and the private sector. The things that need to be in place to consistently support people with these needs outside of the hospital, still aren’t in place now, and until they are, we’ll never reduce our dependence on hospital beds.

One reason it “hasn’t worked” is because of the disconnect between commissioning and clinical reality. There are “two worlds” – the world of the commissioner, driven by financial concerns and political imperatives, and that of the clinician. These two worlds often converse, but they don’t really communicate.

There are some people for whom any minor deviation from the care plan, can trigger huge anxiety, triggering violence, and aggression

Consider the commissioner world – let’s call it “World 1”. This world is all about getting as much value as possible and sticking to statutory service requirements.

It also relies on academic research into the field that over the years has crafted its own story. This story goes something like… “People with learning disability/autism and challenging behaviour shouldn’t ever need to be in hospital. If they do need to be admitted it’s always because their services don’t meet their needs. With the right positive behavioural support plan, well-trained staff, and the right kind of environment and activities, they won’t display challenging behaviour and won’t need to be admitted. When this happens, it is because the service has failed. If we get services right, nobody will need to be admitted to hospital.”

That’s a simplification, but it’s not too far from the truth. I have about half a foot in “World 1”. But mainly I’m standing in “World 2” – the world of care delivery.

Not many clinicians would argue with the basic position of “World 1”, so why are so many people still in hospital?

This patient cohort isn’t some monolithic block, but there is one thing that probably characterises the most frequent reason for clinical crisis in this group. Because of their difficulties, they often need a level of consistency and stability it is difficult to provide, however the services around the person are configured.

There are some people for whom any minor deviation from the care plan, can trigger huge anxiety, triggering violence, and aggression. Sometimes the law – specifically, the Mental Capacity Act – makes it very hard to lawfully implement a care plan. Keeping people safe can sometimes involve a high degree of environmental restriction. When that happens, the current legal framework often requires an assessment under the MHA.

It’s usually at the point of crisis that worlds 1 and 2 meet. In the middle is often an anxious family, often scarred by years of struggling to get the right services for their loved ones. More commonly now, the Court of Protection, which can struggle with the complexity of this cohort, is also involved. Upon admission, CoP typically “hands-off” to the mental health review tribunal until the person is ready to be discharged when the whole process of legal oversight resumes.

Both ‘worlds’ want to use hospitals as sparingly as possible. Both want people to live in the community with well-crafted PBS plans, well-trained staff, and access to services close to home. Both want these services to be delivered as efficiently as possible. Nobody wants anyone to get hurt.

So, what might help shift this stasis and deliver on the “Transforming Care” ideals? Here are some actions that should be taken based on the experiences I’ve had of delivering and running services.

Firstly, the government should expedite changes to mental health and mental capacity acts to allow social care services to deliver levels of environmental support needed to keep people safe.

Legislative change would allow joint MHRT and CoP hearings to become more common, coordinating statutory care across both health and social care settings, particularly in the case of those with forensic needs.

Secondly, NHS England should set a minimum standard of experience and qualification for commissioners. 

Commissioners overseeing the most complex care should all be substantially experienced practitioners and should ideally continue in a degree of patient-facing work to prevent detachment from practice.

Thirdly, all interventions and service approaches for the cohort of people at risk of hospital admission should be standardised.

Clinical guidance is unevenly applied, with substantial variations across the country. Consensus standardised models for triaging people into levels of service, responsive to their needs, are absent. Work is happening in Wales to develop a “tiered” system of service delivery according to the level of challenging behaviour needed. Still, we need to get to a point where the exact package of care that someone with a certain level of behavioural intensity and frequency is defined, cost and delivered consistently. This should include an acceptance of the need for a higher skill mix. Long-term cost savings from avoiding unnecessary admissions should ensue.

Caring for people with a learning disability or autism and challenging behaviour is difficult, uncertain, and sometimes dangerous work, but if our society wishes to think of itself as civilised, it is compulsory. Right now, the commissioning and legal frameworks that govern this work are not supporting the strategic goals of “Transforming Care”.