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Hear the views of affected families and join the discussion. Thanks to Mumsnet for helping us gauge parents' views.
Jane and Jacob
Watch the story of Jane and her son Jacob who live in West Cornwall. Jacob, 12, has hydrocephalus - a medical condition also known as "water in the brain" where fluid inside his skull can swell his brain. He has difficulty walking and needs help with dressing and bathing. He is also on the autistic spectrum.
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Grace and Lara
“At one point, I was driving 400 miles a week just to get my children to school and therapy sessions.”
When her daughter was diagnosed with autism, Grace’s world turned upside down. “It was a massive shock. Almost overnight, she regressed. We had CT scans, MRI scans, an EEG… you name it, before we got the diagnosis. Then it was like: what now? Where do we go for help?”
Grace and Jane are not alone in their struggle to find local services. Hundreds of other parents of disabled children have contacted us to share their stories:
"Everything to do with accessing support for our child has been a constant battle. I have been unable to work. My relationship broke down when my son was five and I have been on my own since. I have become depressed and ill due to the ongoing stress of trying to get services which are appropriate."
"I do feel very much alone not getting enough help. We have no extended family to rely on. We have to drive long distances and a lot of the appointments and service are far away from home. Even trying to access support groups, none are suitable locally. Why is so difficult to get enough help?"
"It has been a long and difficult battle to access the services our son so desperately needs. We have all suffered with both mental and physical health issues and I have become severely ill. We see our son every other weekend and holidays due to the lack of provision in our area. It is wrong that families should be separated from their children in this way but we are also incredibly lucky to have found a school where all of our son's educational, physical and mental needs are met and he is thriving. Our son misses us and we miss him terribly."
"My eldest son is moving 300 miles away. He desperately does not want to go, but his life here is not his own. We live in a part of the country which seems to be completely forgotten about. We have no accessible short breaks services or SEN groups."
Are you affected by these issues?
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If you would like to share your story to support the campaign please contact the Campaigns team: email campaigns@scope.org.uk.
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