Children with learning disabilities and mental health problems 'ping-ponged' around system
Joanne Parkes
Thursday, June 20, 2019
Young people with learning disabilities are struggling to find support for their mental health - despite being four times more likely than their peers to need help, new research has found.
Many families and young people told researchers of being "ping-ponged" around the system from service to service and a lack of co-ordination, the report Overshadowed, published today by the Children and Young People's Mental Health Coalition, suggests.
The report highlights how little over a quarter (27.9 per cent) of young people with both a learning disability and a mental health problem have had any contact with mental health services.
Just under a quarter of those who contacted services said they had to wait more than six months for help, according to the report commissioned by Comic Relief.
The coalition makes a number of recommendations calling for government, the NHS and local services to prioritise tackling the issue - including joining up support and giving young people and families a say in their care.
The report states: "These young people and families can be in contact with their GP, paediatricians, Child and Adolescent Mental Health Services, social care and education among other services.
"Although there may be documents outlining what interventions are on offer, these appear to fail in practice."
And most of the young people and families spoken to said they had not been offered an annual health check through their GP.
Those on the learning disability register are entitled to this from the age of 14, and could be offered checks earlier, potentially leading to better detection and support, according to the charity.
The charity suggests one reason for not being offered the check may be the inconsistent use of terminology across the professions.
A GP may not place a child on the learning disability register if they have been described by a paediatrician as having a "learning difficulty", depriving the child of the annual health check, the report suggests.
The report states that young people with learning disabilities have an increased risk of developing mental health problems due to social and emotional factors, such as living in poverty, parental mental ill-health and negative life events, rather than their disability itself.
Key weaknesses in the system are a lack of early intervention and also transition from child to adult services - when young people may be moving from multiple services.
The increased risk to children with learning difficulties is apparent by aged three and could be an opportunity to intervene early.
Coalition chair Dr Pooky Knightsmith, said: "Young people with learning disabilities are exposed to a range of risk factors that can have a serious impact on their mental health and wellbeing.
"Yet despite this, government and local services are failing to identify and respond to their needs.
"We need to better support those working with young people with learning disabilities to ensure they can spot the signs of emerging mental health problems.
"We also need to improve our understanding of what interventions are most effective for young people with dual or multiple needs.
"The poor treatment of young people with learning disabilities has been increasingly under the spotlight and should serve as an urgent wake-up call for the government and the NHS to take concerted action to put this right."
The coalition makes the following recommendations:
Government
Department of Health and Social Care (DoHSC) and Public Health England map out the provision of preventative mental health support for children and young people with learning disabilities - with the Health Secretary's forthcoming Prevention green paper a key opportunity to develop an action plan
The DoHSC should fund research to strengthen and promote the use of evidence-based mental health interventions for young people with learning disabilities
NHS
As part of the NHS Long Term Plan, NHS England should improve pathways to support for this group, clearly identifying it as a priority for integrated care systems, and consider needs when developing 0-25-year-old mental health models
NHS England should strengthen guidance for specialist children and young people's mental health services to ensure that young people with learning disabilities are not turned away due to not meeting the eligibility criteria
NHS England should prohibit the use of an intelligence quotient (IQ) threshold in children and young people's mental health services
Health Education England should review the training offer available to professionals on the mental health needs of children and young people with learning disabilities and/or autism, offering this to all staff working with children and young people, including those in education and children's services
Local strategic level
Integrated Care Systems should lead the development of more co-ordinated care for children and young people who have a learning
disability and need mental health support
Support the Care Quality Commission's call for a shared local offer on mental health to help local systems to work better together
Local leaders should identify opportunities for young people with learning disabilities and their families to shape local strategy and co-design
services
Local service level
Children and young people's mental health services should ensure families are supported and have the information they need to talk with their children about their emotional wellbeing
Local commissioners should ensure there are other forms of support available in the community to avoid young people's needs escalating while they are waiting for help, and provide appropriate signposting to these services where available.