Parents of children with mental health issues are demanding a review into the service they claim is failing them and their families.
Mums and dads claim their children’s health is being put at risk due to the care being provided by the Child and Adolescent Mental Health Service (CAMHS) delivered at The Manor in Falkirk and Stirling Community Hospital.
They have raised a series of concerns ranging from waiting times to be seen by a psychologist, referrals from other health professionals being turned down, waiting too long for a diagnosis, a lack of compassion by staff, medication issues, a “complete” lack of communication, waiting months for follow-up appointments which are cancelled and no continuity of care – all of which parents say is wrecking their lives.
Katie Sneddon (30) from Bo’ness is angry over the care her eight-year-old son has received so far.
His school and other health professionals referred him to CAMHS four times over the space of two years, but all were refused without even seeing the child.
In another case, a parent says their doctor had to intervene and insist on an emergency referral due to the danger the child was posing to himself and others as he was on a nine-month waiting list for CAMHS at the time.
One child was referred to CAMHS at the age of five when parents say they were told it was “parenting problem”, only to then have a diagnosis when he was 12-years-old, but in the meantime his health and behaviour got much worse, as did the family’s circumstances as there was limited support available due to no diagnosis being given.
Katie says some parents are on the verge of mental breakdowns themselves as they cannot cope with their children who are showing signs of conditions like ADHD and autism and are becoming more violent, aggressive, defiant and disruptive in their homes and at school.
The mother-of-two has now formed a group — CAMHS Forth Valley Parent Voices – to help the hundreds of parents who have complaints. She has also started an online petition to send to authorities demanding the service is investigated.
Katie said: “One of the big problems is the lack of diagnoses or help when there is no diagnosis. When this happens, if there is no referral from CAMHS, other services won’t help because they say they need the referral from CAMHS, which leaves families in a state of limbo.
“There has to be something to bridge this gap because it is having a severe impact on family situations and children’s health.
“Since forming the group we have literally had hundreds of complaints about CAMHS. In my own case, I was told to give my son methylphenidate for possible ADHD, but I refused to do it as I felt it was wrong.
“We then had two one-hour assessments and it was found that he had an intellectual learning disability, but if I had given him that medication, it could have had a seriously negative effect on his health as he also has epilepsy.
“Other parents have also felt pressured to medicate their children and there are a whole host of other complaints ranging from a complete lack of communication to struggling parents being made to feel they are being ‘bad’ parents.
“We have no faith in the way this system is being run as we believe there has been major failures. This isn’t a witch hunt, we just want the best care for our children, surely we are entitled to that.”
The charity Barnardo’s called for a national review of the CAMHS system in March, as part of the Scottish Government’s mental health strategy which was released last week, and yesterday (Wednesday) welcomed a commitment from First Minister Nicola Sturgeon to carry out a review of the referral and assessment process.
Director of Barnardo’s Scotland Martin Crewe said: “We are very pleased that the First Minister has moved quickly and announced this review in response to the concerns that we raised earlier in the week.
“As we highlighted one in five of all referrals to Child and Adolescent Mental Health Services are rejected. It is vital that we understand why this is happening and what happens to those children who are rejected.
“We also hope the review will consider the criteria for referral nationally, the process for making referrals including who can make them, how the process can be improved and crucially what happens to those children and young people who are not seen.”
New research from The University of Stirling which shows that the odds of being rejected by CAMHS were significantly higher if a child or young person was referred by a teacher or had emotional or behavioural difficulties.
A key recommendation from the research is that more work is urgently needed to investigate the experiences of children and young people who are waiting for, or are rejected by CAMHS.
Lecturer Joanna Smith who undertook the research said: “In Scotland we do not routinely collect national data about the source of referral, the reason for referral or any socio-demographic features of children and young people.
“It is then extremely difficult to gain an understanding of the influencing factors on children and young people’s referral pathways and wait time to CAMHS. It is also not clear what happens after children and young people are rejected by CAMHS as to whether and where they obtain support elsewhere.”
NHS Forth Valley say the mental health services for children and young people, which supports 2000 families across the area, have changed significantly over the last year to help increase capacity and reduce waiting times – which showed a 43.7 per cent improvement on the previous quarter.
Additional staff have been recruited in all areas, including intensive treatment nurses to provide support to children and young people in crisis, additional child psychologists and a specialist speech and language therapist.
Work is also under way to form a new parents forum to increase engagement and gather feedback from families and the health board is urging families to raise concerns with them directly so they can investigate any issues.
A spokesperson said: “It is important to recognise that it can take time to correctly diagnosis certain conditions, especially for children with very complex health and care needs. Staff follow national guidelines and best practice and, in some cases, this requires children to be monitored and assessed over several years to see if they reach key developmental milestones.
“Decisions on medication would only be taken following discussion with the family and, where appropriate, other health professionals, such as paediatricians and GPs. This is particularly important in cases where the child or young person has other underlying or long-term health conditions.
“In many instances, medication would only be recommended for a trial period and would be subject to regular monitoring and review to identify any potential benefits or side effects.
“If is not appropriate for a child or young person to continue to be seen by local mental health services then staff would make arrangements for them to be followed up by other local services including learning disability, health visiting, GP or nursing services, depending on their individual needs.”