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Building the right support starts now

In the second of a regular series of updates on NHS England’s work to transform care for people with a learning disability, NHS England’s Director of Transformation – Learning Disabilities, marks the beginning of work in every part of the country to achieve this ambition:

We have seen significant increases in the number of people both being discharged from hospital and/or having their care and treatment reviewed in the last year.

We discharged 1,422 patients home between April 2015 and March 2016, up from 1,093 the previous year.

A total of 3,600 Care and Treatment Reviews (CTRs) have now taken place, and 1,900 people have been discharged or transferred since the start of April 2015 – two thirds of them to community settings.

And because of that, the number of people with a learning disability who are in hospital has fallen; according to the latest statistics out today, there were 2,615 people in hospital at the end of last month, compared with 2,795 last March – 180 fewer.

But progress up to now hasn’t been quick enough. Too many people are still spending too long in assessment and treatment units and in specialist wards – not because they need or want to be there, but because the support and services they need aren’t available in their community.

That’s why this month is such an important one, because it sees the start of work across the country to make that support available for many more people.

As of last week, the 48 Transforming Care Partnerships (TCPs, made up of clinical commissioning groups, NHS England’s specialised commissioners and local councils) have started their work to translate the national vision NHS England and its partners set out in Building the right support into plans that suit their local areas and the needs of people in them.

This will mean working with people with a learning disability, their families and carers, as well as interested local charities and voluntary groups, to establish what services are needed to reduce the number of people in hospital in that area, and how they will be built over the next three years.

While this means there will be lots of different ideas across the country, we expect common themes to be:

  • local housing that meets the specific needs of this group of people, such as schemes where people have their own home but ready access to on-site support staff;
  • more use of personal budgets, letting people and their families plan their own care;
  • local care and support key workers, to help people and their families make sense of the new kinds of support and the choices available to them, and;
  • money for local charities and voluntary organisations so that they can provide free independent support and advice.

I know that TCPs are full of both determination to do better by people with learning disabilities, and of new and innovative ideas how to make it happen. I’m therefore looking forward, as I know many people are, to the first versions of each plan – which will be living, breathing documents – being published in the summer.

One such great idea, which I know many areas have already run versions of, is the Shared Lives model. This is where people who have needs which make it hard for them to live on their own – including, but not just, those with a learning disability – are carefully matched with a carer to share their family and lives.

This kind of arrangement gives people independence, but also the safety of knowing support is close-by if needed. But much more than that, it helps people build friendships and confidence, as well as bringing people together to share meals, laughter and good times.

Shared Lives are already working with the NHS in some areas, but I was delighted that NHS England was able to announce last week that it will be providing a special fund of £1.75million to help more areas develop this kind of service.

I’m looking forward to highlighting more examples like this – as well as setting out the progress being made in other areas – in future blogs.

Dr Julie Higgins

Dr Julie Higgins is NHS England’s Director of Transformation – Learning Disabilities, and Senior Responsible Officer for the Learning Disability Programme.

Previously she was Regional Director of Commissioning for NHS England North Region, Deputy Chief Executive and Executive Director of Commissioning Development at NHS Greater Manchester, Chief Executive of NHS Heywood, Middleton and Rochdale, Director of Public Health for Salford and Deputy Chief Executive at NHS Salford.

She previously had a research career in immunology.

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  1. Katie Clarke says:

    Having worked across the country for many years and having listened to the stories of literally thousands of parents of disabled children the priority for them is their own inner strength, confidence and happiness. Many are on at some point in their lives anti-depressants. Their physical and mental health suffers and their strength to carry on and parent children with very complex deteriorates. Many have experienced trauma (seriously ill children, children with behaviour that challenges, death of a child, divorce, poverty, the list is endless). To continue on their journey – to get the best for their loved one, to liaise with dozens of services and co-ordinate umpteen appointments, fill in numerous forms takes a great deal of confidence and empowerment. The better the family/parent feels about themselves the better the child feels and those professionals working with the family. It is not rocket science.
    Please include this in the Transforming Care – it is more than advocacy and information – far more. If you want this to work go back to the basics and look at the heart of the problem. Ask yourselves what do families really want? The answer is To Be Happy and Healthy (mentally and physically).