Ann Maxwell OBE says it’s a “moral tragedy” that there is nowhere for him to go in Scotland.
A mother is calling on the Scottish Government for better residential care for Scotland’s “invisible” young people as she prepares to send her son 400 miles away to live in England.
Ann Maxwell OBE said it was a “moral tragedy” that Scotland did not have the facilities to look after her son Muir, 18, who has profound learning disabilities, as he surpasses schooling age.
Muir, who has a complex form of epilepsy and requires 24/7 care, is a resident at Donaldson’s College in Linlithgow for four-nights a week and returns home at weekends.
He is now due to go to Young Epilepsy in Surrey from next September after his family found there was nowhere in Scotland equipped to care for him once he had to leave school.
Mrs Maxwell, of Midlothian, has appeared before the public petitions committee at Holyrood to call for better residential services that will support teenagers like Muir as they head into adulthood.
Meanwhile, she is faced with uprooting her son and splitting her family so he can get the help he needs.
Mrs Maxwell said there was “nothing comparable” in Scotland to the centre Muir will hopefully attend in Surrey.
She said: “It was a sad moment when I realised that this was the place for him, but it was 400 miles away.”
Mrs Maxwell claimed policy in Scotland had overlooked people like her son with profound and multiple learning disabilities (PMLD).
She said that while the old long-stay hospitals had, quite rightly, been dismantled, nothing had been created in their place to accommodate those with the highest needs.
Another issue has been a lack of data on how many people in Scotland are classed as having PMLD- with the level of required support therefore unknown, Mrs Maxwell added.
The parliamentary committee is now working to collect this information.
The Maxwell family have made several trips south with Muir so he can be fully assessed for a place at Youth Epilepsy.
It is likely that his local authority, Midlothian Council, will fund a place for three years.
Mrs Maxwell said: “He felt safe there and as his mother I could really sense that.
“I came away and thought this is going to work and it will be our role to make it work, that we visit him as much as we can. It is a flight to Gatwick and a 15 minute taxi ride from there. I could decide to go tomorrow and importantly I could bring him back.”
Mrs Maxwell, however, knows she is in a fortunate position given that she does not work and volunteers full time with Muir Maxwell Trust, which she founded with her husband Jonny in 2003.
It has since raised more than £8m to support families affected by paediatric epilepsy with Mrs Maxwell awarded an OBE earlier this year.
She said she had seen parents give up, become “overwhelmed and worn down” and that she now was fighting for them as much for herself and her own family.
Mrs Maxwell said: “There is this group of people with profound learning disabilities who have almost been abandoned by the system. There is almost no alternative for them.
“I’m really not alone. If you look back at the fight I have been involved with through Muir’s lifetime, it has been relentless.
“I have had to be utterly tenacious and in the course of it all I have had, at points, to turn into someone I don’t like.
“But it is the person that they force you to become, to ensure that Muir’s needs are met.
“I have seen parents give up, they are so worn down, so demoralised, they have become overwhelmed with the circumstances of their own life.
“They have just no fight left in them.
“This is not just for Muir, it is for all the parents.”
She said parents often tried to take on the care of their growing children but became isolated and often without the right support or respite.
“It is not a big group of people, we are tallking about thousands but they represent the most vulnerable in Scotland and that is the tragedy of it all.
“The most vulnerable in society are being overlooked and that is something that doesn’t sit comfortably with me at all.”
Minister for Sport, Health Improvement and Mental Health, Jamie Hepburn, said that work was underway to address some of the issues raised by MrsMaxwell.
Mr Hepburn said: ““We are currently engaging with a wide group of delivery partners, including Mrs Maxwell, to discuss the best ways to meet the needs of people in Scotland with profound and multiple learning disabilities.
“A key focus of our Keys to Life learning disability strategy is to address the gap in evidence and data.
“Understanding the needs and demographic of people with profound and multiple learning disabilities, and how these can be embedded in the provision of services, is essential to the implementation of evidence informed policy and practice. The establishment of the Scottish Learning Disability Observatory at Glasgow University aims to address this gap.”