A mum fighting to free her severely autistic son from a mental health hospital says “people wouldn’t treat an animal” like they do her son, calling his care “worse than being in prison”.
Nicola Cassidy’s 24-year-old son, who also has a learning disability and Tourette’s syndrome, has been detained under the Mental Health Act in Priory Hospital Cheadle Royal since September 2017.
It is claimed Patient A, whose name is not being disclosed to protect his privacy, has no physical contact with anybody, while his meals are given to him through a wooden hatch.
The 49-year-old mother from Walton in Liverpool said: "We fully appreciate that my son has complex needs but he’s being treated terribly.
"He’s locked away from the world and has no physical contact with anyone. For his meals to be pushed through a tiny gap in the bottom of the hatch is awful.
"People wouldn’t treat an animal that way and I feel that his care is worse than being in prison."
Nicola has now instructed specialist lawyers at Irwin Mitchell to investigate the care her son receives at the privately run hospital, also known as an assessment and treatment unit (ATU).
Patient A is looked after by five members of staff and constantly monitored by CCTV.
When his room needs cleaning, he is shut in a separate area, such as the garden which is closed off by high metal fencing.
Nicola said: “Patient A has challenges but is a loving and caring person who needs stimulation and support.
"He is getting nothing at present. I can’t even hold his hand or hug him because of the conditions he’s kept in.
“It’s difficult not to think that the longer he’s left, the worse his condition will become, until the point where he’s unable to be released."
Instead of outsourcing Patient A’s care to the The Priory, Nicola wants Liverpool Clinical Commissioning Group and Liverpool City Council to help work towards providing a community placement.
She believes that with the right support, this will help her son to flourish and spend more time with his family.
A decade on from the Winterbourne scandal - where serious abuse of patients with learning disabilities in a private hospital was uncovered - Nicola is joining a growing number of families aiming to reduce the amount of people in ATUs.
How many people with learning disabilities are in hospital?
According to NHS Digital figures, a total of 2040 people with learning disabilities and/or autism were in hospitals at the end of August 2021.
Of those, 1,145 - 56% - had been in hospital for more than two years.
The average cost to the tax payer of keeping a person detained in hospital is estimated to be around £3,563 per week - £185,276 per year.
Kirsty Stuart who is an expert public law and human rights lawyer at Irwin Mitchel is representing Patient A and Nicola, and is also supporting more than 25 other families with loved ones currently in ATUs.
She said: “This is yet another case where the loved ones of people with autism and/or a learning disability are detained in units which were not designed to care for people such as Patient A.
“Understandably Patient A’s family are deeply concerned.
“We’re now investigating these concerns and how the legal process can help the family.
“Despite previous government pledges to reduce the number of people detained in ATUs, sadly we’re seeing an increasing number of families asking for help.
“They feel they have no option but to seek legal advice in order for their loved ones to receive the care they deserve.”
They are calling on The Priory, the Clinical Commissioning Group (CCG) and local authority to work with them and Patient A’s family to reach an agreement over his care.
The family believe his care should be in the community and say this will give him the best quality of life.
The Priory say, despite claims, it operates on the principle that family and carers will always have access to the accommodation, subject to risk assessment.
How did Patient A end up at Priory Hospital Cheadle Royal?
Patient A was diagnosed with autism aged 7. Shortly after he was diagnosed with Tourette’s and a learning disability.
Around the age of 14, his family began to struggle with managing the changes in his mental state and patient A hit crisis point.
He was placed into residential care aged 14 and was moved from placement to placement experiencing some significant and concerning care.
It was on 5 September 2017 where he was admitted to Mersey Lodge Ward in Cheadle Royal Hospital.
Originally the space was an old file room at the back of the hospital.
The hospital built the private apartment from scratch specifically for Patient A, which he has not left for four years.
Nicola says: “This isn’t about money. He has five carers assigned to him all the time.
"That level of staffing is costly and is probably a waste of money given that he has no contact with anyone.
“We keep asking for more to be done to support my son but nothing seems to happen. We’ve been left with no choice other than to take this action.
“All I want is what any mum would want and that is the best for their son so he can try and make the most of his life.”
A Priory spokesman said care plans are constantly reviewed by experts and specialists.
They said: "The welfare of the people we look after is our number one priority. We are fully committed to the Transforming Care agenda and to ensuring well-planned transfers to the most appropriate community settings whenever they become available.
“At all times we work closely with families, commissioners, and NHSE to ensure patients are receiving the safest, most appropriate care in our facilities.
"That care is delivered and kept under regular review by a multi-disciplinary team of experts, including a consultant psychiatrist and an NHS autism specialist, and independently reviewed by commissioners.
“Staff provide round-the-clock support at Mersey Lodge and all interventions are carefully and continually reviewed, monitored and assessed to ensure they are in the best interests of patients, with the aim of achieving the least restrictive setting possible."
Dan Scorer, head of policy and public affairs at the learning disability charity Mencap, said: “We are 10 years on from the Winterbourne View abuse scandal when the Government promised to transform care, yet over 2,000 people with a learning disability and/or autism continue to be trapped in modern-day asylums.
“Many of the people in inpatient units have ended up there because of the lack of funding for social care and not because they have a genuine need for a period of inpatient mental health care.
“People with a learning disability and / or autism deserve to live in their own home just like anyone else – not in a hospital.”