In December 2012, Sir Norman Lamb, then MP and Minister of State for Care and Support, launched an ambitious reform programme designed to enhance the quality of life for autistic individuals and those with learning disabilities.
The Transforming Care programme was created as a government response to the Winterbourne View scandal. A 2011 BBC Panorama documentary exposed serious failings and abuse in the inpatient unit. The following review also uncovered widespread poor practices in 150 inpatient mental health units.
In a foreword to the response, Sir Lamb said the review was about “lessons we must learn and the actions we must take to prevent abuse from happening again. As much as Winterbourne View fills us all with sorrow and anger, it should also fire us up to pursue real change and improvement in the future.”
One proposed way of doing this was to end the practice of autistic people and people with learning disabilities staying too long in hospitals or residential homes. Instead, the support and care they need should be in a community-based setting near family and friends. It pledged to do this no later than 1 June 2014.
The promise of change was bold and much-needed at the time. However, Sir Lamb informed delegates at our conference that the anticipated progress has yet to materialise. In fact, in many aspects, the situation has deteriorated, underscoring the urgent need for reform.
“Transforming Care was in the early years of my time as a minister, and it was clear I was horribly naïve,” he said. “I had assumed that action would follow when NHS England, local authorities, and other key bodies signed up for the very clear commitments to bring about change.
“At that time, data on how many people were in institutionalised care was limited. We did another audit 18 months later to see how the numbers had changed since we published that commitment in December 2012.
“But nothing had changed. Private companies were still investing millions of pounds into new institutions, providing the wrong model of care. The same number of people were still locked up in institutions that were often far from home. The State had failed to learn lessons from the Winterbourne View scandal, and the families continued to be ignored.”
Today, figures show that more than 2,000 autistic people and people with learning disabilities are still trapped in hospital settings. Over half of these had been continuous inpatients for over two years.
In addition, since Winterbourne View, Panorama uncovered similar levels of abuse at Whorlton Hall. At the same time, the Norfolk Safeguarding Adults Board found that significant failures in care at Cawston Park Hospital led to the deaths of three adults with learning disabilities.
Sir Lamb told delegates that he remembered talking to the father of Sam Sollars, a patient at Winterbourne View. Steve Sollars campaigned heavily for justice following the airing of the BBC Panorama programme, but he told Norman Lamb that he felt guilty that he could not do anything to help his son at the time.
He had noticed on visits to Winterbourne View that his son was becoming more ‘zombie-like’, and despite raising his concerns with the NHS and the local authority, no one listened to him.
Sir Lamb said: “I ended up thinking how could the State leave someone just trying to do their best for their son feeling so guilty. I’ve reflected a lot since the time of Transforming Care, and one of my biggest realisations is that the terms transforming and transformation are used a lot in the NHS, and they end up meaning very little in practice.”
Another conversation that sticks out to him was with Sarah Ryan, the mother of Connor Sparrowhawk, who died in July 2013 while an inpatient at Slade House, an NHS care unit in Oxford run by Southern Health NHS Trust. Also known as ‘Laughing Boy’, Connor had drowned in the bath because he was left alone despite having epilepsy—an entirely preventable death.
One of my biggest realisations is that the terms transforming and transformation are used a lot in the NHS, and they end up meaning very little in practice
Connor’s death led to the discovery that Southern Health had failed to properly investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems over four years.
Norman Lamb said: “She sought me out at an event in my capacity as Care and Support Minister to talk about how Southern Health had marginalised her and that they refused to properly engage with her following Connor’s death. Again, I was left with the sense that the State ignored people.
“We see this too often. It was the same with the post office scandal. I had another situation with the early death of hundreds of older people at Gosport War Memorial Hospital. People had been complaining for years that their loved ones had been going in for rehabilitation and were dying unexpectedly. Again, no one had listened to those families.”
In 2015, after recognising that the scale or pace of change for individuals he wanted to see had not yet happened, Sir Lamb initiated the No voice unheard, no right ignored consultation. It aimed to strengthen the rights of people with learning disabilities, autism, and mental health conditions.
He worked with Sarah Ryan and the campaign group ‘Justice for Laughing Boy,’ which had, around the same time, put forward a Bill to change the law called the ‘Disabled People Community Inclusion Bill,’ also known as the ‘Laughing Boy’ Bill.
“We proposed significant changes to the rights of people and their families regarding the care people received. It spoke about the introduction of personal health budgets to transfer power from institutions to people to decide what was appropriate for their loved ones”, he said.
“Nine years on, and where are we now? For people who have left institutions, their lives have changed for the better, but for many others, nothing has changed. Despite all the promises, we are still (at the time of our annual conference) waiting for reform of the Mental Health Act.”
Sir Lamb is the Chair of South London and Maudsley Foundation Trust, a specialist Mental Health Trust. He said that the Trust is trialling a new model of care for mental health, learning the lessons from Triest in northern Italy, where they have the principle of freedom first moving away from the widespread use of cohesion and institutional care towards supporting people in their community. He said this model needs to be rolled out across the mental health, learning disability and autism care specialities.
The State has routinely let down autistic people and people with a learning disability and failed to learn from scandals
He is also chairing the HOPE(S) project, which is a clinical model of care to reduce long-term segregation. Segregation is where people with learning disabilities and autistic people are locked up in rooms with no contact with the outside world.
“This approach breaches their human rights and has no place in a modern, compassionate and humane healthcare system,” he said. “We aim to continue that work in ending scandalous long-term segregation.”
It is still an area that requires significant work, as evidenced just last week by a BBC investigation showing leaked CCTV footage revealing how special school pupils suffered while locked away in so-called ‘calming rooms’ at the Whitefield School in Walthamstow, north London.
Another project Sir Lamb flagged to delegates was the work being led by his sister, Dr Kirsten Lamb, a GP who specialises in learning disability in Hertfordshire. She has led the case for developing a new specialism for doctors seeking to understand the complex interaction between learning disability and several physical health conditions, such as constipation and recurrent pneumonia.
“We know scandalously that people with learning disability die 15-20 years younger than other people for no good reason, he said. “Part of the reason is that some physical health conditions are not adequately addressed or ignored, and the consequences are fatal for individuals.
“Kirsten has started a training programme funded by the Royal College of Physicians and NHS England to ensure that the medical profession has a better understanding of the health needs of people with a learning disability. The aim is to end the scandal of people dying so much younger than they should do.”
He ended his talk by saying that the State has routinely let down autistic people and people with a learning disability and failed to learn from scandals. Yet, people working at the grassroots level can still make a difference by putting families and individuals at the heart of decision-making.
“I refer to the title of that green paper: ‘no voice unheard and no right ignored’. It is still needed, and reform is very much long overdue.”
The World Health Organisation (WHO) recognises the Trieste model of mental health care as a world standard for community psychiatry.
Trieste’s approach is based on four principles: patients are citizens deserving dignity and respect; there is great therapeutic value in including them in the city’s daily activities; work with the community creates an inclusive social fabric that welcomes patients; and patients function best when we preserve their freedom and play to their strengths.
It is characterised by simplified and quicker admissions to and discharges from inpatient facilities, a limited number of individuals in inpatient facilities for lengthy durations, and an emphasis on well-resourced community support. Therefore, it presents a clear and better alternative to supporting autistic people and people with learning disabilities than is currently in place in England.
Crucially, the Trieste model demonstrates that when legislated for and well-resourced, autistic people and people with learning disabilities can be effectively supported in the community without unnecessary and lengthy stays in inpatient facilities.
A recent Health and Select Committee report recommends that the Department of Health & Social Care and NHS England & Improvement implement the Trieste model of care for autistic people and people with learning disabilities. All new long-term admissions of such people to institutions should be banned except for forensic cases. For cases with severe comorbidity, admission over three months should be subject to set safeguards.
