Norman Lamb MP: It’s time to stop treating people with learning disabilities and autism like second-class citizens
5 min read
Former Health Minister, Lib Dem MP Norman Lamb writes ahead of today’s Backbench Business House of Commons debate in his name on ‘Future of the Transforming Social Care programme’. He calls for a cross-departmental ministerial taskforce to drive progress.
Nobody would deny that people with learning disabilities, autism, and behaviours that challenge deserve the same rights and opportunities in life that others would expect. They should be able to enjoy fulfilling and independent lives; a home in their community among friends and family; the chance to take part in activities and work if they can; and above all, the fundamental right to be treated with dignity and respect.
Sadly, this is not the reality for thousands of people with learning disabilities and autism in our country. A lack of support for their health, care and social needs means that many do not get to live as active members of their community, while just 6% of people with a learning disability are in paid work.
The greatest scandal of all is that vast numbers of these people are stuck in inpatient units when there is no medical reason for them to be there. Many are stranded in institutions for several years, living as forgotten citizens while they too often suffer poor and degrading care.
Just look at the horrific abuse that took place at Winterbourne View or the tragic death of Connor Sparrowhawk, who drowned in a bath while in the care of Southern Health. More recently, a review of the deaths of 103 people with learning disabilities during the last two years found that 1 in 8 cases involved treatment delays, gaps in care, neglect or abuse.
We see countless other stories of people with learning disabilities and autism being treated like second-class citizens. Meanwhile, they continue to suffer unacceptable health inequalities and premature mortality. Shocking research has shown that autistic people die on average 19 years earlier than the general population. The picture for those with learning disabilities is more horrifying still, with a reduced life expectancy of 23 years for men and 29 years for women.
The Transforming Care programme was established in 2015 to turn the tide on this appalling scandal. It set a bold ambition to move care out of hospitals, build the right support in the community, and improve people’s independence and quality of life. Transforming Care Partnerships were set up in every region – bringing together CCGs, specialised commissioners and local authorities to develop local action plans in partnership with individuals, families and carers.
However, it’s clear that Transforming Care is failing to realise this vision. We have not seen nearly enough progress in developing local services to allow people to lead full lives in their communities. The programme has been too slow to redirect funding from health to local authorities, meaning that there remains a serious shortage of staff with the appropriate skills and training.
And far from being a last resort, too many adults and children remain locked away in institutions. The latest data from NHS Digital shows that there are still at least 2,400 people with learning disabilities and/or autism stuck in hospital – a reduction of just 16% since March 2015. This intolerable policy of containment amounts to a fundamental breach of people’s basic human rights – and yet, hidden from view, it continues to happen on a massive scale.
As the clock ticks down towards the end of the programme in March 2019, there are widespread concerns about cutting corners to reach the target of a 35-50% reduction in bed numbers before proper community-based support is in place. NHS England has said that 922 learning disability and autism beds will be decommissioned by next March. But there is a real danger that people with highly complex needs – including people who are a potential risk to themselves and to others – will be placed in the community with severely inadequate provision.
Today, I am leading a debate in the House of Commons to highlight the shameful lack of progress under Transforming Care and to urge the Government to establish an improved successor programme that will make a real difference to people’s lives. This must fully involve people with learning disabilities and autism, and their families.
We need to learn from the challenges and experiences of recent years. Building the workforce will be critical to success, which is why I will be calling for a new ‘workforce development fund’ to ensure there are enough staff with the skills to deliver the right care, in the right place, at the right time. Pooled budgets will be essential to make sure money is being spent on the right services in the community – not simply tied up in hospitals. But we also need a cross-departmental ministerial taskforce to drive progress and show that all parts of government are doing their bit to meet the whole range of people’s health, care, education, housing and employment needs.
They say that any society should be judged on how it treats its most vulnerable. It’s time to stop treating people with learning disabilities and autism like second-class citizens and instead give them the support they need to flourish. I hope the Minister will give them some hope this afternoon.
Norman Lamb is the Liberal Democrat MP for North Norfolk
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