In September and October 2020 we surveyed 116 families from Northern Ireland, England and Wales.
We did this to find out more about how children with a learning disability A learning disability is to do with the way someone's brain works. It makes it harder for someone to learn, understand or do things. aged 0-5 years and their families are treated in hospital, and what could be done to make their experiences better.
Part of the survey included asking people if they felt that they received the right type and amount of information from the hospital care team in the weeks and months following the diagnosis of learning disability for their child.
The responses to the survey showed that:
Only 31% said they were given the right type and amount of information in the weeks and months following their child's learning disability diagnosis.
45% shared that they had experienced negativity, prejudice or discrimination from healthcare professionals, either deliberately or non-deliberately.
34% think that children with a learning disability do not receive equal hospital care compared to children without a learning disability.
When I said I wouldn’t test in any pregnancy I was asked did I really want another baby with Down's syndrome.
What we want
Parents need coordinated care and support that is suitable for them and their family.
To create the change that is much needed, we are campaigning for hospital trusts to create a new Disability Coordinator role to help families get the support they need.
They will act as a vital link for families between hospitals and the community A community is the people and places in an area. .
The coordinator will also work with hospital staff to provide better support for young people with learning disabilities and their families in hospitals.
There was no support after finding out our unborn baby had Down's syndrome. All the time we were offered abortions.
Resources to help you
No one should have to experience healthcare inequalities because they have a learning disability. But responses to our survey show that sadly and shockingly, this does still happen for many families.
To help, we have created some resources. These include guides about learning disability diagnosis.
We have also, along with Bradford Talking Media, Bradford People First and Airedale NHS Foundation Trust, made resources to help ensure that children with a learning disability (aged 0 to 5) get the support they need when they are in hospital and how reasonable adjustments can be made.
Your rights in hospital
This video has been created by Mencap and Bradford People First. It explains the rights Rights are the things everyone should be allowed to do like have a say, or go to school. of families and carers of children (aged 0 to 5) with a learning disability when they have to go to hospital.
“I received my son’s diagnosis over the phone. There was no follow up appointment, nothing to explain everything to me, just, ‘This is where he’s at. Deal with it.’”
Treat Me Well
Treat Me Well is our campaign to transform how the NHS treats people with a learning disability in hospital.
We know the treatment people with a learning disability get in hospital is still not good enough in many parts of the country. This has to change.
“I was also constantly asked when pregnant if I tested to see if there was anything "wrong" with this one.”