Jigsaw Family Support Group, which works with more than 400 households with youngsters diagnosed with autism and attention deficit hyperactivity disorder (ADHD) in the county said it could no "longer keep quiet" about issues it claims families are experiencing with the county's Child and Adolescent Mental Health Service (CAMHS).
In reply South Staffordshire and Shropshire Healthcare NHS Foundation Trust which took over CAMHS earlier this year, said it was talking to parents and parent groups as part of efforts to make improvements to the service now part of a "wider 0 to 25 emotional health and well-being service".
Teenager Jeff Antwis, 14, died from his injuries after he was struck by a train at Shrewsbury’s Harlescott level crossing on January 30. He suffered from high functioning Aspergers and had been struggling with ‘low self esteem’, but was given a routine appointment to see a CAMHS doctor when he admitted making attempts to take his own life.
READ MORE ON THIS STORY:
Now Jigsaw, which was not involved in supporting Jeff, has written to the service with its concerns and is calling for a a specialist school to be created to cater for pupils with similar problems.
It says: "Many of our families have some horrendous experiences with the health and education services and these are just some of them.
"Children must routinely fail in education, before even being considered for a referral to the CAMHS and then year long waiting lists, which has a long term negative effect on their mental health. What exacerbates this is that some of the primary and secondary schools in the county have a lack of understanding of neurological conditions and because of this, it increases the time it takes for children to access the early Intervention and CAMHS leading to a massive detrimental effect on the mental health of many children.
"Parents who ask for support and assessment through the Child Development Centres (CDC), early help and paediatrics in the county, are treated appallingly. Many are incorrectly accused of neglecting and abusing their child, which seems to be used, to divert from the school staff having little understanding of the child’s needs.
"Extensive public funding was used in the development of Kettlemere, the autism hub, which is situated at Lakelands Academy, in Ellesmere. However, this unit is still not in use two years later. We as a group could run the Kettlemere successfully, rather than it sit unused when the need is huge."
"It seems that the CDC will only diagnose and are interested in those who are classed as low functioning. This leaves out those who previously have had a diagnosis of Aspergers, a-typical autism, ADHD, pathological demand avoidance syndrome (PDA) and girls with autism, who present very differently, yet all need extensive support. This group of children and young people really struggle socially and find education, especially during secondary school, very difficult to deal with.
"Unlike Telford & Wrekin who have four, Shropshire does not have a specialist school for children with autism and so those who cannot cope in mainstream schools have to be shipped out of county, to the Wirral, Lancashire and other places, which creates a huge strain on the family. "
The letter further states: "CAMHS do not work alongside schools with children in their joint care, as they do in many other counties, if they did, it would provide better support and continuation of care for these often vulnerable children and young people. Some special educational needs co-ordinators within some schools still have very little understanding of children who have autism, ADHD or any other neurological condition and this causes a lot of problems for the parents, especially if the child presents that they are coping in school. It’s when they leave the front gates that the often violent and controlling behaviour starts.
"This happens because of the anxiety that builds up during the day, to conform and to look like their peers, it is hugely exhausting andmany will just explode when they come out of the gates or at home."
In response Martin Evans, trust spokesman, said: "Our thoughts and sympathies are with Jeff’s family and friends. In May 2017, South Staffordshire and Shropshire Healthcare NHS Foundation Trust assumed managerial control of Shropshire CAMHS Service, which is now part of a wider 0 to 25 emotional health and well-being service. Since May, we have been engaging with young people and parent groups to really understand what we can do to improve. We are also working closely with the CCG’s who commission the service, to address these areas."
"The new contract is very much based about close collaboration with our partners to support young people more effectively. With our partners we have introduced some changes. The Children’s Society is offering drop ins within Shrewsbury and Telford, Kooth now offer on-line information and support and Healios offer psychological interventions and assessments. This is in addition to the mental health team. More information about the new service is on www.sssft.nhs.uk/0to25."
Among the changes being introduced is the opening of the weekly drop-in services in partnership with The Children's Society in Shrewsbury and Telford while online counselling services Kooth and Healios will provide additional support.