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Channel 4 to Broadcast Dispatches: Under Lock and Key

Thousands of people with learning disabilities and autism are still locked up in hospitals, despite promises made by the government in its Transforming Care Policy. NHS commissioners and local authorities continue to send these vulnerable young people to big institutions, instead of providing more bespoke care packages to meet their complex needs.

In St Andrew’s, Northampton, one of the biggest and wealthiest health care charities in Britain, Channel 4 Dispatches have discovered serious concerns;

  • About patients subject to restraint, seclusion and frequent sedation - a Care Quality Commission inspection published in September 2016 found that a technique called prone restraint – or face down restraint - is widely used across all wards at St Andrew’s, Northampton.
  • In the six months in 2015/16 there were 600 incidents of prone restraint in their child and adolescent wards alone.
  • One patient, admitted in October 2012, who remained, mostly in segregation, for 22 months in a room with very little natural daylight
  • Four patients dying within 7 months of each other on one ward between October 2010 and May 2011, all of whom were prescribed the drug, Clozapine.

NHS England aims to halve inpatient beds by the end of 2018, and replace them with community based support and extra funding for early intervention mental health services to help prevent people ending up in hospital in the first place. There are still over 2,500 people with learning disabilities stuck in hospitals.

St Andrew’s advertises itself as the UK’s leading provider of specialist mental healthcare and receives 95% of its revenue from patients referred by the NHS.

Five years ago, after repeated scandals, the government promised that people with learning disabilities would no longer remain locked up in big impersonal institutions for years. They said they would be transferred to local, personalised care providers.

Many leading experts in learning disabilities and challenging behaviour believe that big institutions like St Andrew’s are the wrong environment for patients with these conditions.

Make sure to watch this special Dispatches on Wednesday 1st March at 10pm 

 

Government response and proposals for mental health care in the UK

After repeated scandals, the government promised to move people with learning disabilities out of big institutions under a plan called Transforming Care. The government has said personalised care should be available to everyone with learning disabilities and autism, to improve their lives.

Its most recent CQC inspection last year reported that St Andrew’s Northampton still ‘requires improvement’.

Two years ago, having missed targets in 2014, NHS England said there would be a planned closure of beds in mental health hospitals.

NHS England aims to halve in-patient beds by the end of 2018, and replace them with community based support. They are committing extra funding to early intervention mental health services to help prevent people with learning disabilities ending up in hospital in the first place.

Today there are still over 2,500 people with learning disabilities stuck in hospitals.

Norman Lamb, former minister in charge of Learning Disabled Care, “Here’s the scandal, we’ve got lots of people with learning disabilities, with autism, with mental ill health, treated in effect like second class citizens, not having the same rights as other people enjoy, and that’s intolerable. This is the state restraining people’s liberty behind lock and key and I don’t think that’s acceptable. I was given the advice that very many people kept in these institutions were actually capable of a better life, independent, with support in the community.”

 

Fauzia Yasmin Hussain – case study

Fauzia spent almost two years in St Andrew’s Healthcare in Northampton and is still troubled by her experience.

Fauzia is 19 years old and has Tourette’s and autism. She has complex sensory difficulties that usually go along with autism. In her early teens Fauzia’s anxiety got much worse, causing her to freeze up for hours, lash out and harm herself or others. Her family were told she needed to be in a specialist hospital.

Fauzia was just fifteen when she was sectioned under the Mental Health Act and admitted to St Andrew’s.

• Fauzia was prescribed high doses of medication, including anti-psychotic drugs

• She remained, mostly in segregation, for 22 months in a room with very little natural daylight.

• When her family visited her they observed her being dragged by the arms forcefully.

The family contacted MP Norman Lamb who told St Andrew’s how unhappy he was with Fauzia’s care. With the help of their local authority, her family found another care provider willing to take her. Finally, after many delays, Fauzia left St Andrew’s in September 2014.

Norman Lamb, the coalition government minister in charge of Learning Disabled Care at the time, said “I had heard very big concerns about the nature of the care in this institution. So I went to St Andrew’s in Northampton, and saw Fauzia in her room, which in effect was a cell, it seemed to be that a 15-year-old girl [Fauzia] was being treated in effect like a prisoner. It was one of the most shocking things that I’ve seen in my time in parliament. Just as a human being I was just horrified”

Since leaving St Andrew’s her quality of life has improved dramatically. She now lives in residential care but comes home to visit her family once a month. Less than a month after arriving at her new care provider, Alderwood, Fauzia was no longer being medicated by intramuscular injection and was never restrained. Measures seen as necessary at St Andrew’s.

 

Matthew Garnett – case study

Matthew Garnett has complicated neurological conditions, including autism and learning disabilities. As a teenager Matthew’s distress and behaviour became more unpredictable and violent. At a crisis point, he was sectioned under the Mental Health Act and placed in a secure hospital.

6 months later, in March 2016, he was moved to St Andrew’s where he was placed in an autism and learning disability ward.

St Andrew’s said it provided specialist autistic care, tailored to an individual’s needs. But his parents soon became worried. 

• In his first five months on the unit Matthew was restrained or secluded 11 times.

• In the six months before Matthew was admitted there were 600 incidents of prone restraint – or face down restraint - in their child and adolescent wards alone.

• Matthew was physically restrained when being given injections.

• Matthew was pulling his hair out and was frozen with anxiety, often unable to speak.

• On one visit his parents noticed excrement on Matthew’s shoe, he had soiled himself and not been cleaned properly

St Andrew’s told Dispatches, “That seclusion and restraint were used only as a last resort… to protect the individual, other patients and their medical teams.”

Helen Hayes, local MP attended a meeting at St Andrew’s with the Garnetts; “I went into that meeting with an entirely open mind. And I was really genuinely shocked at the attitude to the family, the dismissal of the concerns, the unprofessional behaviour, just left me feeling very, very uncomfortable indeed about how a very vulnerable and unwell young person was going to be looked after within that environment.”

 

Bill Johnson – case study

Bert and Laura’s son Bill was born with minor brain damage and in his teenage years he developed schizophrenia. Bert and Laura struggled for years to get the right treatment for Bill. At 16 his condition deteriorated and living at home became impossible. After years of unsuccessful residential placements, the Johnsons were relieved when Bill was sent to St Andrew’s in 1993.

“We were very pleased indeed, because we thought he would get the right treatment because the hospital had the reputation of being the best in the country for people who were long-term seriously mentally ill with schizophrenia.”

In 2005 St Andrew’s began to expand, using large grants from the NHS. New facilities were built and hundreds more patients admitted. Bill’s parents noticed changes.

• They noticed a change in climate and were not allowed on the ward to visit Bill

• Bill would call and state he was afraid of dying

• In May 2011 a check-up with the medical doctor at St Andrew’s recorded his physical health as normal

• Two weeks later Bert visited Bill, he recalls Bill giving him a hug and saying “well Dad if I never see you again” and didn’t finish the sentence. This was unusual behaviour as he was usually inhibited from physical contact.

• Three days after Bert’s visit at 2.30 in the morning, Laura was woken up by a telephone call from St Andrew’s informing her that Bill had died.

• Bert and Laura were not told the details of how their son had died. Five months after Bill’s death, Bert wrote to the Northampton coroner with questions. Only when they got a copy of the post mortem did they learn that Bill had endured a painful death caused by extreme constipation, and that a drug called Clozapine, prescribed at St Andrew’s, may have been the cause.

From early evening onwards, 9pm, Bill was showing very severe symptoms, vomiting, taking his clothes off, frequent trips to the lavatory. The documents revealed that ward staff closely monitored Bill for the next three hours. After they noticed a further deterioration they called an ambulance.

Professor Glynis Murphy, Clinical Psychologist in Learning Disabilities, “I was utterly shocked, that he could’ve had something so mundane as constipation and yet nobody noticed it, and it’d got so severe that it killed him, I could not believe it. Especially as he was on a medication where a known side-effect is precisely that.”

His first inquest was ruled inadequate and the verdict quashed. Bert and Laura discovered that Bill was not the only death in St Andrew’s of a patient on Clozapine.

• Three other patients on the same ward and prescribed the same drug had died in the space of seven months.

• The St Andrew’s medical doctor who examined Bill a few weeks before his death admitted he had not thoroughly checked Bill’s abdomen,        despite recording that he had in his notes.

• The second inquest revealed major failures in how his health had been monitored. He was so constipated when he died that there was a large  hard stone of excrement in his intestine – he would have been in a lot of pain.

• The Care Quality Commission did not carry out their own investigation into the deaths of Bill Johnson and three other patients on the same    ward.

• We’ve discovered that an NHS review into St Andrew’s was commissioned following the four deaths. But it was never published.

Five years after Bill’s death, the use of Clozapine at St Andrew’s may still pose a potential risk to patients: the latest CQC report raised concerns as they found no evidence of physical health monitoring in care records, following alerts about a patient’s clozapine levels.

Two years after Bill Johnson died; St Andrew’s paid Bert and Laura £30,000 in compensation 

In relation to Bill’s death St Andrew’s Healthcare told Dispatches, “We have undertaken a full and thorough internal investigation to identify any changes to our policies or practises that may provide extra vigilance surrounding the use of Clozapine.”

 

Response from St Andrew’s Healthcare:

In a statement St Andrew’s responded “treating patients with…complex and challenging mental health conditions requires constant vigilance, experience and clinical judgement

They say that they are highly regulated and that as a result of “the intensive, high-quality care that… our specialists provide…. around three quarters of St Andrew’s patients are able to be discharged to more local, or less secure environments”

They say there are patients at St Andrew’s that no longer need to be there because there is a “lack of community places” and they are “investing significantly to support patients in making transitions” to them with “step-down Centres”. They support the Transforming Care programme.

They added, “The safety and wellbeing of all our patients… is paramount…including protecting patient confidentiality…which means that while we strongly refute the allegations made … as false and misleading we are unable to comment further.”

 

Statement from the CBF, Mencap and Young Minds:

Jan Tregelles, chief executive at Mencap, and Viv Cooper, chief executive at the Challenging Behaviour Foundation said: “Dispatches: Under Lock and Key should shock the nation as to how young people with a learning disability can be subject to a childhood stuck in institutions. 6 years after the Winterbourne View Scandal and countless promises made by Government to families, we still see the concerning overuse of seclusion, physical restraint and over medication suffered by people with a learning disability whilst in inpatient settings across the country. How much longer do families have to wait until the NHS stops sending their loved ones to these out-dated institutions? There needs to be a national spotlight on this issue. We are denying people with a learning disability their basic rights by sending them to places where they remain under lock and key, with no guarantee of when or if they will return home to their communities.”

 

Sarah Brennan, Chief Executive Young Minds: “Young people in mental health hospitals should be getting the help they need to get home. Parents should never be in the position where they have to battle to get their voices heard when they have concerns about the care they are receiving. Yet, nearly half of the parents with children in mental health units we surveyed have felt unable to challenge crucial decisions about treatment. This urgently needs to change. That’s why the Government and the NHS must ensure that young people and their families have clear and enforceable rights.”

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