Families of young adults who have been “locked away” in secure hospitals for years are to demonstrate outside the Scottish Parliament.
Relatives of Scots with autism and complex needs say their loved ones have been inappropriately detained in psychiatric facilities due to a lack of carers and accommodation.
The families are rallying outside Holyrood in a day of action with campaign group New Routes Home on Thursday.
The Scottish Government has pledged to reduce the number of vulnerable people with complex needs in hospital settings by 2024.
‘I fear I will never see my son again’
Gordon Hughes, 25, has spent the last six years in the high secure Intellectual Disability Service at the State Hospital in Carstairs, South Lanarkshire.
His mum, Ruth Hughes, is taking part in the protest at Holyrood with other families.
Ruth, from Ardrossan, told STV News: “I feel have been frozen out of my son’s life. This has absolutely destroyed him and if we raise concerns, we are branded a troublemaker and treated like the enemy. Enough is enough.
“I feel if nothing shifts, then this pattern is just going to continue.”
Gordon was diagnosed with attention deficit hyperactivity disorder (ADHD), autism and a learning disability – going into hospital for treatment aged 19 in the summer of 2018.
His family were told he would be there six months but he remains there more than six years later.
Ruth added: “You wouldn’t believe how much he has deteriorated. I see that was a real sliding doors moment.
“What would have happened back then if we had been listened to properly and given the right help when he was in crisis?
“Right now, I feel like I’m living a nightmare. I cant see Gordon, contact has been restricted and he is being denied a family life.
“It’s like a death and I fear I will never see my son again. I want him back with the correct support and help. I will never give up on my boy.”
‘We visited him through a mesh window at Christmas’
Fraser Malcolm has a rare chromosomal condition which affects one out of 85,000 to 100,000 males. He also has limited speech.
At the age of 17, he was sectioned under the Mental Health Act after becoming aggressive towards his family in March 2021.
His mum Karen was told he would be there for a short time to help stabilise him. He was then moved to a psychiatric ward at Woodland View Hospital in Ayrshire, where he remains today.
Karen said: “He doesn’t want to acknowledge his birthday, so we bring him cake and presents into the ward so they can do something. It’s heartbreaking for the whole family.
“We had to visit him through mesh at his bedroom window on Christmas Day. We’ve spent three Christmases without him.
“I feel sick driving to the hospital. But we have to let him know we are still there for him, even though he is angry with us.
“He has been hard on his dad and he had the best relationship with him.
“Unfortunately, each time he was taken to the hospital, his dad had taken them. In his mind he blames him for this.”
Fraser’s parents fear he has developed several more issues as a result of being sectioned and insist he needs to be rehabilitated.
“He is so institutionalised now. You can’t lock people up and expect them to come out and be normal,” she said.
“He went in with one issue and now he has 101.
“There’s no support for him. We have complained far and wide.
“We shouldn’t be locking away people with special needs behind closed doors. They have a right to a life like anyone else.”
Jamie Henry has autism and has been in locked hospital units for nearly seven years despite doctors saying it was not appropriate for him.
He was recorded as a delayed discharge in January 2017, meaning he should have been moved into the community, but no appropriate options have been found.
He is also being held at Woodland View Hospital.
His mum Sylvia, from Paisley, said: “There’s such a big difference in him now. He has no tooth at the front. His eyes are so sad looking sometimes.
“He needs his routine back. He needs to be outdoors. He loves people and animals. He had such a good family life.
“It feels so wrong. They don’t listen to families and I feel like a broken record.
Sylvia said there should be round-the-clock support available to people with complex needs.
But she said she has been told they are not enough care staff to help people like Jamie live in the community.
“People in hospital can’t go anywhere. There are no houses, no workers, no places for them to go so they are not coping out in the community.
“I don’t see a way out of [the hospital] because there are no providers.
“Once they are in these places, it’s easier just to leave them there than find them somewhere in the community as they are someone else’s problem.
“People with autism should not be detained under mental health.”
She added: “I always say, ‘I can’t wait until this is the last time I’m going down this corridor.'”
A spokesperson from Renfrewshire HSCP said: “We have been working collaboratively with Jamie’s family and relevant partner organisations to find the right community supports for him.
“We understand the family’s frustration, despite our collective rigorous efforts. Jamie’s needs are highly complex – and we care about his safety, well-being and rights to achieve positive outcomes in his life.
“It is a priority for us to find the right solution for Jamie and we will continue to work collaboratively to explore all options.”
A North Ayrshire Health and Social Care Partnership spokesperson said: “Whilst we cannot comment on individual patient circumstances, we can provide an update in relation to our approach in Ayrshire and Arran.
“North Ayrshire Health and Social Care Partnership (NAHSCP) continues to engage with families and patients to ensure effective discharge planning solutions are identified at the earliest opportunity. We share the ambition for people to be cared for at home, or as close to home as possible, and to minimise all hospital stays. There are ongoing challenges locally and across Scotland in the capacity, availability and variety of community-based care options for individuals with complex support needs.
“In Ayrshire and Arran we have a number of patients in our hospital who require a discharge home back to their own local areas. To support their successful discharge back home, NAHSCP facilitates regular planning meetings with Board areas and multiagency partners to support areas to plan for repatriation to their home area from inpatient provision at Woodland view, in alignment with the Coming Home report recommendations.
“Our Ayrshire and Arran inpatient hospital, Woodland View, is a purpose designed, community-based state of the art mental health facility providing high quality therapeutic provision to enable positive rehabilitation opportunities in the process of discharge planning and transition to community placements.
“In North Ayrshire we have proactively developed a number of local service models to support the needs for complex community support, including supported accommodation developments and the recruitment to an Intensive Support Team, which will prevent admission, promote earlier discharge, build community capacity and support repatriation planning of people who have previously been placed out of area and wish to return to their home localities. These developments, together with continuing to work with community-based care providers, provides us with alternative options to offer patients and families.
“We will continue to work with other Board areas, local authorities, HSCPs and the Scottish Government in coordination planning in relation to implementation of the dynamic support register in alignment with the Coming Home recommendations.”
Mental Wellbeing Minister Maree Todd said: “We are unable to comment on individual patients but can confirm that there are no patients detained at the State Hospital with autism as the only diagnosis.
“The Dynamic Support Registers, which will improve monitoring and planning of care for people with learning disabilities and complex care needs, were launched earlier this year.
“We are committed to reducing inappropriate out-of-area placements and delayed discharges experienced by people with learning disabilities and complex care needs. We are working at pace and know that the timescales associated with this work, in particular commissioning and building new housing, take time to deliver.”
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