The findings, based on responses from 448 parents whose children have been in mental health hospitals over the last five years, found that a quarter (24%) think that their child’s mental health has “deteriorated”. The survey was carried out by YoungMinds and the National Autistic Society.
“It is deeply alarming that so many parents feel angry and frustrated with the treatment their children are receiving in hospital,” said Sarah Brennan, chief executive of YoungMinds, the children’s mental health charity.
“In the worst cases, young people can be trapped in inappropriate care for years, with their mental health deteriorating, while their parents desperately try to find a way to get them home.”
The parents in the survey had children who have been in Child and Adolescent Mental Health Services (CAMHS) Tier 4 (inpatient care) units over the last five years. There are around 1,300 CAMHS Tier 4 beds in England overall.
One anonymous parent said: “My child has had a number of admissions to different units. The communication and support from these services has been very poor.
“I have felt guilty, judged, not listened to and belittled.”
The survey also revealed 44% of parents felt unable to challenge decisions about their child’s treatment and 52% didn’t know what rights their child has while in hospital.
A third (33%) said they were not consulted about decisions about medication, and 40% were uncomfortable with decisions made about medication.
Fewer than a third (29%) of parents felt sufficiently involved in their child’s care and 53% were not confident that their child was receiving appropriate care.
More than a third (39%) said their child had not been supported to have a suitable education.
Another anonymous parent said: “We needed a key contact that all questions about our daughter could be voiced through. Although she had a key worker, she was rarely at the unit or contactable.”
YoungMinds and the National Autistic Society are today [27 February] launching the ‘Always’ campaign and accompanying petition, which calls for the Government to enhance and enforce the rights of children in mental health hospitals.
The campaign is based around the Always Charter [below] that sets out 12 rights that young people in inpatient units and their families should always have.
Brennan said: “It’s crucial that young people and their families have clear and enforceable rights that put that young person’s needs at the centre of their care and treatment.”
Mark Lever, chief executive of the National Autistic Society, said: “Families should be fully involved in decisions about the care of their loved ones. Yet our joint survey with YoungMinds suggests that many parents of children and young people in mental health inpatient units feel powerless.
“This is putting an unfair strain on families who are often already under almost unimaginable pressure.
“The government must address this unacceptable situation by strengthening the rights and voices of children and their parents. Care and support should always be built around each child, including those on the autism spectrum, and be as close to home as possible.”
Commenting on the survey, Ged Flynn, chief executive of national charity PAPYRUS preventing young suicides told The Huffington Post UK: “This is no surprise. Every day our HOPELineUK helpline services hear from desperate parents and young people who feel neglected by mental health services.
“Whilst we recognise the strain that many services under under, there can be no excuse for letting down children and young people at risk of suicide, as well as those who are worried about them.”
Professor Russell Viner, Royal College of Paediatrics and Child Health’s officer for health promotion, told HuffPost UK: “This report echoes recent findings from the Association for Young People’s Health where parents feel they have not been valued or kept informed when it comes to supporting their children or young people’s mental health care needs.
“Parents today are central to treatment of physical conditions in children and young people, and there are few reasons mental health should be different.
“We recognise the need for treatment to focus on young people and it is essential to respect young people’s rights, but we also know that families are incredibly important in terms of supporting them to get better.
“This survey comes at a time when there is major national investment in transforming child and adolescent mental health services. But that investment must include ensuring that both young people and their carers are involved in planning and improving the services and care they receive.”
An NHS spokesperson told HuffPost UK said: “Improving the availability and quality of care for children and young people with mental health problems is a clear priority for the NHS, and councils, third sector organisations, schools and social care all have a role to play, backed by an additional £1.4bn pledged for children and adolescent mental health services which is already kick-starting this work.”
For more information about the Always campaign and charter, and to sign the petition, visit https://act.youngminds.org.uk/always.
For more information:
PAPYRUS HOPELineUK offers confidential, short-term advice and support to young people experiencing thoughts of suicide, or to anyone with concerns about a young person with thoughts of suicide. 0800 068 4141.
YoungMinds Parents helpline offers free, confidential online and telephone support, including information and advice, to any adult worried about the emotional problems, behaviour or mental health of a child or young person up to the age of 25. 0808 802 5544.