ITV’S current Emmerdale storyline highlights the desperate need for better support for families of children with a learning disability at diagnosis. Now Mencap’s new Children’s Campaign is calling for Disability Coordinator roles at all hospitals to support families of children with a learning disability, from the point of diagnosis and beyond.
The Emmerdale storyline shows a couple who, without the right level of support, are left to process a huge amount of information and make a decision whether to terminate their pregnancy following a pre-natal diagnosis that their baby has Down’s syndrome.
Mencap’s chief executive Edel Harris said: “Parents can often find out that their child has a learning disability at a hospital appointment – whether a pre-natal diagnosis or shortly after birth.
“Hospitals have a vital role to play in providing information and advice – not only about health services but also signposting to the other support available such as support for early years development and access to social services. Families are often left to discover and navigate a complex maze of services on their own at a time when they need support the most, leaving a vital period when needs are unmet and may escalate.
“Many families experience serious anxiety pre-birth, through a lack of appropriate information and support at the point they receive a diagnosis. It is crucial that they get the right information, advice and access to support – at both the hospital and in the community – to give their child the best possible start in life.”
Mencap’s recent survey revealed only 31% of parents or carers said they received the right type and amount of information from the hospital care team in the weeks and months following their child being diagnosed as having a learning disability.
- Mencap’s Learning Disability Helpline on 0808 808 1111 (10am-3pm, Monday-Friday) or email firstname.lastname@example.org