Our journey with CAMHS started 3 years ago, things were getting tough at home, the number of meltdowns from our autistic son was growing, his outbursts often destructive, occasionally violent and to compound matters there was very little sleep. After conversation with the pediatrician he made the referral. Many months later we were told that we had been referred to the wrong team.
Meanwhile things were getting worse our social worker referred us again and finally after about 6 months we got an appointment for them to assess our son. There was much paperwork and assessments to be completed. CAMHS visited us at home, at school and at his childminders to get an overall picture, documents and reports were written.
Then finally after a few months we had an appointment with the Doctor, the result was that our son should take medication, an anti depressant to help with his anxiety, some melatonin to help him get to sleep and he should be assessed for ADHD.
We were given a tiny dose to ensure that there would be no side affects of the medication, then 2 months later we had another meeting stating that we hadn’t seen much change. It it would be hard to say if any change was due to the medication. They increased the dosage once and then twice.
Things still kept getting tough, the childminder finally told us she could no longer keep our son in her care after school as it was hard to keep him safe. The lack of sleep and the outbursts were relentless, the school also noticed that he was becoming harder and harder to manage. Our boy was suffering and there seemed no way to make things better for him.
I kept being told to go back to CAMHS and that they must do something, I called CAMHS being fobbed off they were just too busy and no they could not give me any timescales.
Soon after things were brought sharply into focus when he managed to abscond from our garden scaling a 6 foot gate and hopping over before anyone could do anything about it. By the time we were the other side of the gate he had scarpered, after a few minutes of frantic searching and calling the police he was retrieved by us some 5 mins walk away in the garden of a neighbour we did not know up their apple tree.
A crisis meeting was held, what could we do to make sure it never happened again, our answer we weren’t sure we could. We were already hyper vigilant we had an enclosed garden our son was incredibly quick and strong.
CAMHS said the next thing would be a functional needs assessment which would put strategies in place that would help. Finally we thought some ideas that might be able to help our son and help us manage. This would help join up the care he received in school and at home and make sure that everyone was doing the same thing. The problem was we already were doing the same thing and we were seeing the same and more challenging issues.
3 months later the assessment process began but we didn’t receive any document for another 9 months. We were told again that they were too busy to complete it, by the time we did receive the report it only included things we had told CAMHS. The document was not shared with the school and failed to come up with any workable ideas we hadn’t already tried. It didn’t take into account anyone’s views but ours and it was out of date. We now had even more pressing issues to deal with.
I was frustrated, frustrated with all the paper work, the meetings, the having to push to get any action, the endless excuses for not having completed assessments and needing yet more processes to be completed before anything could help. It felt like their lack of resources was our families problem.
Eventually the stress of it all got to me one day on my drive to work I just burst into tears from the stress, the frustration and the worry of it all. I remembered I had a health assurance line from my work I called it up and 2 mins later I was able to speak to a trained councilor. Interesting I thought how is it that I am able to get help in 2 mins at the point I need it but my son who desperately needs it and is at daily breaking point cant get it for years.
My story is not unique, I have spoken to people unable to get help for their child who is at risk of suicide. The the service hides behind archaic processes pen pushing and paperwork that suck up resource time and deliver little value to the people who need it most.
I cant help feeling something else, it was all so unscientific, decisions made based on opinions. As our son is non verbal we would be asked how it had been and we might have been impacted by what had happened that week (had it been good week or an incredibly bad one) The treatment plans implemented seemed pretty standard, failing to tie up our true situation with treatment that would help us solve the actual challenges.
There is a crisis in child mental health services and I am sure in many other places in the NHS. It feels like their processes our out of step with the modern world causing an impact on patients as the needs grow and on the general well being and motivation of their staff.
But how do we solve these problems ? That isn’t easy and there is evidence that there is an ever growing need for effective and timely mental health care for children. Could technology help us streamline things?
Imagine if you went to a doctor raising your concern about your child’s mental health, the doctor agreed it should be looked at and you were emailed a digital form to complete. That form could include a fact find and details of any other people who should be contacted ie school, child carers.
When the parents complete the form they the school etc could also be sent their fact finds. Everyone could be issued with an app to track the child’s behavior over a period of time and that behavior could then generate a dashboard of information about that child ready for the first meeting with a specialist consultant. The school, the parents and the healthcare professionals could all see the dashboards which might help identify root causes of problems and help come up with better strategies.
After implementing the recommended strategies or medication the behavior could then be tracked again to see if it was working and to help with future planning.
Imagine then as a doctor this information could be used to anonymously categorise people exhibiting certain symptoms and enable them to drill down interventions that have worked across thousands of patients enabling them to get a clear picture of what is working and what isn’t before they recommend care plans to their patients.
The improved efficiencies could mean more people get the help that they need faster and its likely to be more informed. Staff could be less overwhelmed by the quantity of work that they need to get done and overall the process could be better managed. There is plenty that could be done. What do you think ? is it time for change in how we approach mental health care for children ?
Technology for Good is a Community Think Tank for creating and sharing ideas that will help people living with neurological conditions live better lives. We would love you to get in touch or find out more here
Other ways to Connect with Technology for Good – Community Think Tank