Today
Mon 25 October 2021

Saba Salman reports on how the Government could provide specialist support in a creative, humane way which takes people out of institutions and puts the individual at the centre of their care

Jamie Newcombe, 24, is about to move into his first home, “an ordinary house in an ordinary street” in his native south-east London, says his mother Julie. Jamie recently chose a new wardrobe in his favourite colour, green.

Moving into your first house sounds unremarkable, but for Jamie it is a long-awaited, hard-won homecoming. The young man, who has a learning disability, autism and intermittent mental health issues, has not lived permanently with or near his family since he was 10.

Jamie went to four different residential special schools before being sectioned under the Mental Health Act at 18 when his residential care broke down. He then lived in five separate hospital-style units, including psychiatric intensive care, secure rehabilitation and an assessment and treatment unit (ATU). 

Jamie had his arm broken during a restraint at one unit, but was not taken to A&E for 24 hours, as his mother told the Joint Committee on Human Rights in 2019. He has Post-Traumatic Stress Disorder (PTSD) because of these experiences. 

Discharged as an inpatient five years ago, he moved to residential care 10 miles from his family. Although infinitely better than an institution, Julie says that Jamie has been “ticking over – it wasn’t a permanent home”. Now, Jamie says: “I can’t wait to live in my new house.”

Jamie’s experience not only proves what is possible after years of institutional care, it is a timely story. 

On 31 May 2011, BBC Panorama broadcast horrific undercover footage of staff dragging, hitting and restraining inpatients at Winterbourne View ATU in South Gloucestershire. The scandal forced a focus on such modern-day asylums housing 3,500 people who were at risk of abuse, restraint and seclusion. The Government promised to move everyone to community-based housing and launched a ‘transforming care’ improvement plan.

But, a decade on, official figures show that 2,035 people remain warehoused. Transfer deadlines have been missed and ‘transforming care’ has faded away (2019’s NHS Long Term Plan set the latest target of reducing numbers by 50% by 2023/24). In March, 150 people were discharged but 105 people were admitted. Analysis by professor Chris Hatton of Manchester Metropolitan University shows that ‘discharge’ includes transfers to other units and if someone dies while in a unit

Meanwhile, private care firms profit from this state-funded incarceration, with average costs per person of £150,000 a year.

In the years since Winterbourne View, I have heard from countless families broken by institutional “care”. They describe a closed culture, human rights breaches, and a revolving door of discharge and readmission. The latter is a vicious cycle triggered by poor support after discharge and – perversely – the psychological damage inflicted by living in restrictive, institutional regimes.

Campaign group Rightful Lives, which Jamie’s mother is part of, is holding a vigil on 31 May to remember those abused at Winterbourne View. Families of former inpatients, with charities Mencap and the Challenging Behaviour Foundation, are working on a dossier of stories to highlight the broken promises.

The shameful catalogue of failure in inpatient units over the past decade includes the preventable death of teenager Connor Sparrowhawk in 2015 at a Southern Health NHS foundation trust ATU. More recently it was the abuse at Cygnet Health Care’s Whorlton Hall in 2019 and its Yew Trees unit last year. Such inadequate care is increasing and happens mostly in units run by private providers, according to the regulator, the Care Quality Commission.

The Coronavirus has intensified the inequalities facing learning disabled people, who have been at a higher risk of dying from the virus but were not initially prioritised for vaccination. Punitive practices have soared in inpatient units during lockdown, according to evidence at a parliamentary hearing.


Providing Creative, Bespoke Support

The Government needs to look at Jamie’s current experience and replicate it for others. His new start is down to several supportive individuals backing a bespoke housing choice, says his mother. This includes a family advocate, a social worker, the housing lead at NHS England, and a local authority care commissioner.

Usually, says Julie, “there’s not enough will in the system… you get a risk-averse clinician who doesn’t want to discharge and a commissioner who isn’t bothered”.

Julie, supported by specialist advocate Jayne Knight, secured an NHS England grant under the transforming care programme in 2019. Specialist not-for-profit social care charity, Choice Support, as Jamie’s new landlord, bought the semi-detached bungalow chosen by the family after a long search. Community-based not-for-profit organisation Nexus will provide 24-hour two-to-one support.

As Jamie settles in, his support hours should reduce. Julie says it is vital the family picked the specialist housing and care providers. Jamie’s landlord has got to know him, keeping the family abreast of developments from the house purchase to building works.

The family chose his support provider because it focuses on the individual, something Julie says larger providers often fail to do: “When the chief executive assessed Jamie’s needs, the first thing she wanted wasn’t to read the files or talk to previous staff. She wanted to meet him.”

There was additional knowledge and support from voluntary advocate Jayne Knight, who says care commissioners can resist bespoke solutions “because people don’t have time to be more creative so instead take an ‘off the shelf’ version”.  

Freeing people from institutions, adds Julie, requires a human rights approach, accountability and ring-fenced funding. Although costs may not immediately fall once someone moves to the community after an ATU – it can still be £4,000 a week – value for money is better and support bills generally reduce as people settle in. 

A spokesperson for the Department of Health and Social Care said: “We are committed to investment in community services to reduce inpatient rates for people with a learning disability and autistic people. We are supporting discharges with the £62 million Community Discharge Grant and through additional funding set out in the Mental Health Recovery Plan.”

England’s roadmap out of lockdown is bypassing more than 2,000 people still locked away in archaic, brutal institutions that shame our modern, humane society. The Government’s lack of interest in tackling such inequality is clear from the absence of social care – the system that supports people to live in communities – in last week’s Queen’s speech.

As Julie Newcombe says: “Most people can live good lives in the community. Why would you not want to let them? Why would you not want to make that possible?”

Saba Salman is the editor of ‘Made Possible: Stories of Success by People with Learning Disabilities – In their Own Words’ and the chair of the charity Sibs, which supports the siblings of disabled children and adults

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