Charity Mencap is demanding action to close the health inequality gap for children with a learning disability. The new Children’s Campaign is calling for greater support from the point of diagnosis and beyond.
The campaign highlights the need for a hospital disability co-ordinator role to support families of children with a learning disability due to the current severe health inequalities they face throughout their life.
Part of the charity’s Treat me Well campaign, it will see the launch of new resources for both parents and healthcare professionals at the point of diagnosis.
Edel Harris, chief executive of Mencap, says: “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.”
A new survey from Mencap, which gathered responses from 116 families of children with a learning disability, found that less than a third 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 diagnosis.
“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,” explains Edel.
“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.”
Highlighted by a current storyline on ITV soap opera Emmerdale, the need to create better health outcomes for children with a learning disability has led to the launch of the campaign.
The storyline, being broadcast this month, shows a couple who are left to process a huge amount of information and decide whether to terminate their pregnancy following a pre-natal diagnosis that their baby has Down’s syndrome, without the right level of support.
As part of the new campaign, Mencap is calling on hospitals to create a disability co-ordinator role to ensure a link between the hospital and the support available from groups and services in the community. The role would support and signpost families to get the support they need, from pregnancy and throughout childhood.
Access to the right specialist support and health information, and this being communicated in an appropriate way, is essential to achieving the best outcomes for the whole family.
Often this doesn’t happen, but closing health inequalities must start in childhood at the point of diagnosis.
Introducing the new role in hospitals would also play a vital role in shaping support and services in the area by working with local authorities and health bodies around local commissioning arrangements, and assisting with the transition from child to adult services for young people with a learning disability.
The survey also found that many parents found the experience of diagnosis was negative, confusing and traumatic, with nearly half of respondents reporting they had experienced negativity, prejudice or discrimination from healthcare professionals either deliberately or non-deliberately.