I'm protesting to bring my son home from hospital
- Published
It has been seven years since Sylvia McMahon's son Jamie was taken to a secure hospital following a spell of challenging and dangerous behaviour.
But despite twice being cleared to leave, he is still there, because no solution can be found for him to live in the community.
Jamie has autism, ADHD and a learning disability.
Sylvia says her son, who is now 26, is losing his youth trapped in a hospital in North Ayrshire because there are not the resources or the will to bring him home.
"I miss his mischievous sense of humour," she says.
Jamie is just one of the young men whose families are taking their protests to the Scottish Parliament.
They say their sons are cruelly locked in hospitals, where they have far fewer rights and sometimes struggle to access basics such as time outside in the fresh air.
Four of those families told their stories to a BBC Disclosure documentary last year and they now say a lack of action and improvement in their sons' lives has brought them to Holyrood to raise their cases.
Fraser Malcolm has been in a secure hospital in Ayrshire for two-and-a-half years but has been recorded as "delayed discharge" since September 2022.
This means he has been cleared by doctors to be released but no arrangements have been made for him to live in the community.
The 20-year-old has a learning disability and is almost non-verbal, with complex care needs.
Like Jamie, he was detained after a period of crisis and aggressive behaviour.
He is still in hospital because his parents and the local authority cannot agree a package of support for him to come out.
His father Andrew wants Fraser to come home to purpose-built accommodation at the family home.
However, he would still need round-the-clock support from a team of carers.
The authority responsible for his care - North Ayrshire Health and Social Care Partnership - has suggested independent supported living for Fraser where he would be on his own at night, with staff nearby watching "remotely".
His family don't feel there are the resources or staffing in place to make the suggested solution work.
"We've got everything and more for him sitting at his house," his dad Andrew says.
So for now Fraser remains in hospital, where his family say he is deteriorating and has become institutionalised.
"Fraser is going further backwards," his dad says.
"He won't come out the ward at all. He's scared of the phone ringing. He's scared of everything."
Fraser's family say that his prolonged stay in hospital has breached his human rights by keeping him from his family and the things he loves which make him who he is.
In February 2022, the Scottish government published the Coming Home Report, a major paper on people like Jamie and Fraser, with a "mission to significantly reduce delayed discharge… for adults with learning disabilities and complex care needs by March 2024."
The families say not enough is being done to deliver on the recommendations of the report to bring people like their sons home and to give them a voice.
They are calling on the Scottish government and politicians to do more so that young men like Jamie and Fraser can live in the community with the right support.
The Scottish government says it introduced a Dynamic Support Register earlier this year, designed to get a fuller picture of the hundreds of people like Fraser and Jamie who may have become stuck in the system.
Mental Wellbeing Minister Maree Todd said the register would improve monitoring and planning of care for people with learning disabilities and complex care needs.
She said the Scottish government was committed to reducing delayed discharges for this group.
"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," the minister said.
"We're now coming up on the third Christmas without him," says Fraser's dad Andrew.
"He's had his 18th, 19th and 20th birthdays in there. All of these things are having a huge negative effect on him."
"We see glimpses of what he was. We miss him just not being part of the family."
North Ayrshire Health and Social Care Partnership (HSCP), which is responsible for Fraser's care, said it could not comment on individual cases.
It said it continues to engage with families and patients to ensure effective discharge planning solutions are identified at the earliest opportunity.
The HSCP said it shared the ambition 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," it said.
Renfrewshire HSCP, which is responsible for Jamie's care, said it had been working collaboratively with his family and relevant partner organisations to find the right community support for him.
"We understand the family's frustration, despite our collective rigorous efforts," it said.
"Jamie's needs are highly complex - and we care about his safety, wellbeing 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."
Also taking their protest to the Scottish Parliament are the mothers of Gordon, who has been in the maximum secure State Hospital Carstairs for six-and-a-half years, and Kyle, who has been there for 14 years.
Gordon and Kyle have a combination of autism, learning disabilities and ADHD.
Both were sent to Carstairs after a period of crisis and aggression, and both their families say their sons have been assaulted and traumatised while there.
Each of them is subject to an order from the courts which means their detention in the hospital could be permanent.
Their mothers are calling for them to be brought home.
"My son is lost in a system with no way out, as the system works against getting them out," Kyle's mum Tracey says.
"I want Kyle to be part of this world, he needs his family around him. I want my son back in my life to be a family again."
Gordon's mum Ruth said: "We need overall change to happen.
"The money used to detain our children needs to be put to good use.
"We need good supported housing in the community with well-trained staff. Our loved ones need care, compassion and the love of their families.
"They need a life which they have been denied."
The State Hospital Carstairs told the BBC it could not comment on individual patients but in a statement said: "No patients are wrongly held."
"All patients are legally detained. No-one has been admitted to the State Hospital solely because they have autism or a learning disability."
The hospital also said there were legal avenues for appealing against detention.
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