Commissioners must take the long view in neurological care

It’s now two decades ago since I was a senior manager at the Department of Health. I still remember how appalled I was on witnessing young people with neurological conditions such as brain injury and young onset dementia, inappropriately placed.

No rehabilitation. No specialist care. Abandoned, really.

‘We have failed to provide appropriate care for the 1 million people who are disabled by neurological conditions’

In November last year, Newsnight highlighted poor care for people with brain injuries. Medical advances mean brain injury is significantly better treated in acute hospitals and more people are surviving such injuries with little reduction in life expectancy.

The result is that more people require specialised rehabilitation – a service that the UK is, as a whole, not yet delivering to a sufficient standard.

Historically, as a country we have failed to provide appropriate – sometimes even acceptable – care for what the Sue Ryder charity estimates to be 1 million people who are disabled by neurological conditions. It’s a postcode lottery for good services.

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Specialist rehabilitation

Recently a unit manager from the neurological care provider PJ Care, which I founded, assessed a young man – let’s call him Richard – whose attempted suicide had left him with massive brain injuries. We were alarmed to discover he had essentially been written off by health and social care professionals and commissioners.

He was, to put it bluntly, doomed to months, perhaps years, in a generic care home.

‘Quality rehabilitation in residential post acute neurobehavioural centres saves between £200,000 and £1.13m per patient in lifetime care costs’

However, with appropriate care and treatment from a multidisciplinary team Richard – and others like him – can progress to semi-independent living in the community.

For sure specialist rehabilitation in a properly resourced neurological centre is, in the short term, more costly. But let’s look at available evidence for longer term outcomes.

The journal Brain Injury published peer reviewed research in December which found that “quality rehabilitation” in residential post acute neurobehavioural centres saves between £200,000 and £1.13m per patient in lifetime care costs. This included costs such as GP contact, hospital admissions and social services support. The study was based on 274 individuals.

Greater investment

This is the reason why experts such Michael Barnes, chair of the United Kingdom Acquired Brain Injury Forum, are calling for more investment in brain injury rehabilitation.

Professor Barnes told the BBC: “There is good evidence that although rehabilitation costs more money clearly than someone going home or going to a nursing home, that money is recouped over two to three years by that person requiring less support from the state, getting back to work and earning money.”

‘Too often we feel that key personnel within CCGs have little in depth familiarity with neurological care for people with long term conditions’

Like all NHS providers we are eagerly awaiting the commissioning landscape to settle so we can put our case to NHS England’s service area teams of specialist commissioners.

Too often we feel that key personnel within clinical commissioning groups have – for reasons we understand – little in depth familiarity with neurological care for people with long term conditions.

In the meantime we will continue to push the message that specialised longer term neurological care and treatment is, as the evidence shows, the way forward, clinically and in terms of cost. 

There is every reason, I hope, that NHS England’s five year strategy for specialised commissioning – due to be published in July – will reflect this.

The next steps

On 25 February we learnt of the positive changes for specialised commissioning at the “next steps for specialised commissioning” event, organised by Westminster Health Forum, where key commissioning and policy heads were present.

As I write this, another one of our residents, a 22 year old who spent three months in a coma after a car accident and suffered serious brain injury, is preparing to move to supported living in the community.

When he was referred to one of our centres – Eagle Wood in Peterborough – he was unable to lift his head off his pillow. One year later, he can run with physiotherapist support.

‘His care will have cost more than if he’d stayed at home or been in a non-specialist care home but his rehabilitation outcomes have been significant’

Yes, his care will have cost more than if he’d stayed at home or been in a non-specialist care home but his rehabilitation outcomes have been significant.

Like all specialist providers, it is this longer term picture we urge commissioners to keep top of mind.

After I had witnessed terrible care for young people with neurological conditions two decades ago, I sat down at my kitchen table and scribbled on the back of an envelope the vision and plan for a neurological care centre in Milton Keynes.

As a nurse I wanted to try to put things right and deliver better life and health outcomes for people with neurological conditions. I hope commissioners will not only share this vision but help ensure it is reflected in care pathways and rehabilitation prescriptions for the same people.

Jan Flawn is founder of PJ Care, a provider of specialist neurological care and neuro-rehabilitation for people with progressive or acquired neurological conditions. She is former acting head of mental health and community care at the Department of Health