A mum is being forced to make a 600 mile round-trip to visit her disabled son – because there is only one hospital in the whole country that can look after him.
Eddie Marshall, 16, has learning disabilities and mental health issues which mean that he needs round the clock care.
His mum Adele Hanlon, 33, has been told that there is only one centre in the whole country capable of caring for him.
But the hospital is in Newcastle – a 600 mile round trip from her home in Bristol.
Because the journey is so long and expensive, and due to her partner’s work commitments and childcare difficulties, Adele is only able to visit Eddie once a month.
As a result, the teenager, who has attachment issues as well as ADHD, autism, dyspraxia, epilepsy and bipolar disorder, becomes distressed when it comes to saying goodbye.
Mum-of-four Adele has now launched an online campaign to get better NHS facilities which could accommodate Eddie closer to home.
The insurance worker, who is on maternity leave to care for her five-month-old son, Reggie, said: “I just want to be able to be a mum to Eddie.
“The visits used to be so much more regular. If I wasn’t on maternity leave I wouldn’t be able to see him at all.
“When I go and see him it’s great for the first half but in the second half Eddie gets distressed about me leaving. We come away knowing that he is going to be upset.
“It’s heartbreaking.”
Adele began to notice Eddie wasn’t an ordinary child when he was a toddler and by year two she realised he needed specialist care.
“When he was growing up he wasn’t hitting milestones so we were eased into the fact that he was different and as he grew older he couldn’t cope in mainstream schools,” she said.
“He started spending more and more time at home because he wasn’t coping with change or noise of distractions and the teachers couldn’t cope.
“We needed carers just to get him to school in the first place. It just wasn’t working.”
In December 2012, aged 13, Eddie started at a residential school which was close to his family home in Southmead, Bristol – but the centre was unable to cope.
On Christmas Day that year, Adele was asked to stop her daily visits to Eddie because he was becoming too agitated and unmanageable when she left.
The following week, as his behaviour continued to deteriorate, the youngster was sectioned under the Mental Health Act.
He was moved to St Andrew’s Hospital, Northampton – a 250 mile round-trip, which was just about manageable for Adele and Eddie’s step-dad, healthcare assistant Rob Green.
But when they went to visit Eddie they found him heavily sedated and unhappy, and after a damning report by the Care Quality Commission they decided to move him again.
Adele said: “When he phoned me the first thing he said was, ‘They’ve got lockers here mummy.’
“I said, ‘That’s lovely, you can keep your things safe,’ and he replied, ‘No mummy, the lockers are for me.’ When the children don’t cope they go into seclusion.
“Trying to imagine what that was like for him was difficult. No parent should ever have to go through that.
“When we went to visit him he was drooling because he was so heavily sedated. I had never seen a child like that before. It was scary.
“He was being treated like a prisoner, but he wasn’t a criminal he was unwell.”
In May 2014, the family took the decision to move Eddie and plans were discussed to create a bespoke unit in Bristol to care for him.
But the teenager was instead moved further away from home – to St Nicholas Hospital in Newcastle – a 12-hour round trip from Bristol.
Now, Adele, along with Eddie’s brothers Jordan, 18, Alfie, four and baby Reggie, have to endure a five-hour train ride or an expensive flight.
“It is just too far,” she said. “It is unfair to expect any family to travel so far. Something needs to be created in the South West. There is a demand for it.
“We love Eddie to pieces, but this is really hard. We really need this to get out so that people are aware of what we have to go through to see him.
“We don’t want other families to have to go through this.”
NHS England South West Assistant Director of Specialised Commissioning, Joe McEvoy said placing children so far away from their parents was the last resort.
He said: “It can be desperately sad for families when young people with very complex conditions have to be treated far away at highly specialist centres.
“This must be a last resort and our absolute priority is always to get them living back in their own homes with specialist community support as soon as possible.”
Adele has started an online petition to get Eddie moved closer to home, which has been signed by more than 2,500 people.
To support her, search ‘Action For Eddie’ on Facebook or Change.org.
