A new survey conducted by Mencap found that only 31% of 116 families of young children with learning disabilities reported that they received the right types of information from the hospital care team in the weeks and months following the child’s diagnosis.

One respondent to the Mencap Early Years Survey 2020 said: "We were given some booklets and sent on our way."

Moreover, many said that their experiences of diagnosis were negative, confusing, and traumatic with nearly half (45%) reporting that they had experienced negativity, prejudice, or discrimination from healthcare professionals either intentionally or unintentionally.

Another respondent to the Mencap survey said: “I would have liked to have pointed in the direction of where I could get relevant info, instead of relying on Google."

Providing crucial support through a Disability Coordinator

Mencap suggested that the support offered by the Disability Coordinator could include signposting families to sources of information; assisting in the development of care plans by notifying external agencies; facilitate the involvement of the family in decision making; and liaising with local health authorities.

This issue has been thrust into the spotlight with a recent Emmerdale storyline – that is being broadcast this month – that depicted a couple, who are left without the right levels of support and information during the prenatal diagnosis of their baby with Down’s syndrome.

Alongside the launch of its Children’s Campaign, Mencap is also launching resources for both parents and healthcare professionals at the point of diagnosis. The resources that are aimed at parents and children with learning disabilities provide information and guidance. While for health professionals, the resources focus on their vital role as a source of information that they play when a family receives a diagnosis.

Edel Harris, Chief Executive of the learning disability charity Mencap, said: "Parents can often find out that their child has a learning disability at a hospital appointment - whether a prenatal 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.”