One thing that's become very familiar in the last few years, both personally and from reading your comments and emails, is how outragously hard it is to get the right medical and psychological support for ASD children and their families.
Our family has been waiting for a CAMHS appointment since the beginning of the year. I've called up the consultant's secretary on numerous occasions and still nothing happens, despite being promised an appointment at the beginning of April. It's frustrating, stressful and my son meanwhile, is not getting the help he needs.
Not that going to CAMHS is a particular help in many cases. When Son1 went, we were told that CBT wouldn't work because he had Asperger's and as he was now in the right school, goodbye to you!
And professional support for parents? Don't get me started. My GP told me candidly that there wasn't help for anyone and that's just the way it is.
One lady who wrote to me recently said, "The two consultants in our CAMHS team told me that my son doesn't tick enough boxes to fit easily into a diagnosis but they did acknowledge that he's a complex boy with significant processing deficiencies (whatever that means). I stamped my foot a bit and said that they jolly well need to try to fit him into a box so that we can get some help and support for him and they agreed to carry out some diagnostic tests. Unfortunately, all did not go to plan as when we arrived at the department for the cognitive tests, the consultant had collapsed and was being taken away in an ambulance. The other consultant told us that his colleague had been made redundant and that we wouldn't have another chance of an appointment with her. This was in January and then I never heard from them again."
She went on to say that her GP wanted to refer her son elsewhere, but CAMHS refused to support the referral as they want to see the diagnosis through themselves and are expecting a locum to come in the near future. "It seems that at every step of the way we are faced with obstacles. I can't believe what they are prepared to let these children go through before they get a diagnosis. I am determined to get things sorted for my son but feel so sorry for the other children out there who have parents who are less able to challenge the professionals. I hope that one day things will be different."
Another mother told me that her 11 year old daughter, who suffers from chronic pain and ASD, was refused an assessment by the LEA. After a period of homeschooling, her daughter went back into school as although her anxiety and self-esteem had improved, the mum was concerned about her daughter becoming isolated.
She said, "During this time, I applied for a statement but the LA refused to assess her, saying the the school were meeting her needs. I didn't appeal because I was so wrapped up with dealing with her pain and needs myself.
"She spent about two weeks in school, before it became quite apparent that her new levels of self esteem had dropped through the floor. She bacame anxious and her pain got worse. So she was signed off sick by the doctor. I was told that if a child was signed off for over a certain period they would get some help, but none arrived. So during November and December she remained at home, waiting patiently for her medical appointment in January, which we have waited for since July. The school sent her a few SATs papers.
"After an understandable meltdown in the hospital and the trauma of the whole experience of day surgery, she returned to school a couple of weeks later and lasted three and a half days. She was signed off again with anxiety and pain but without any firm diagnosis that would satisfy the LA that we had new information to reapply for a statement."
After seeing a different specialist, she has now been given the diagnosis she needs but is still out of school. The diagnosis means that she can now, however, access out of school education. The LEA has now agreed to assess but only after putting this family through an incredibly stressful year of relentless rounds of school and medical appointments as they tried to convince someone to help their daughter. The young lady was, during all this time, in a lot of pain.
Still, it's not over yet the mum says, "I just hope we do get a statement so fingers crossed, and in the meantime I'll learn all about tribunals just in case we don't!"
Will the new Green Paper make things easier? Will it really put the child at the centre and bring together health, education and care? We're still waiting for the government's document, "The Way Forward" to be published, despite it being 'imminent' since February.
The only way a reformed system can work is if all the services do work together for the good of the child and on top of that, if the family or carers supporting the child are in turn, supported themselves. It seems like such a no-brainer, so why does it just never seem to happen?
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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I have the greatest empathy for you and all the people you speak of, I too am facing the same barriers – I was told this week that my son faces permanent exclusion, I suggested that everywhere we go we get a door closed in our faces – the school’s response was ‘maybe he will get the help he needs if we exclude him’ – how can this be right??!!
I too am waiting for CAMHS to give us an appointment, we have been turned down by a paediatrician because apparently my son is too complicated for them to deal with – when I suggested we have already been through the CAMHS system I was told that they were unaware of that when they declined my referral! Yes – they made a decision without even looking in his NHS records – when asked what I do now I was told I could make a formal complaint or go back to the GP and ask for a re-referral.
Is it any wonder that parents give up?
Good luck and lots of love to all you parents stuck in this ridiculous system that claims to offer education to our children, keep smiling, keep fighting and never give up hope.
Rant over 🙂 xx
For a child out of school look at the Local Government Ombudsman report ‘Out of School Out of Mind’ which sets out the LA’s duties to children out of school. If support is not happening people can complain direct to LGO. They will fast track cases where children are out of school and not getting home tutors etc
I’ve written about CAMHS on my own blog but in essence it took us three months to get an appointment for my son when he became suddenly ill with severe anxiety/agoraphobia. I don’t think a three month wait is acceptable for any level of mental illness because it can worsen. In my son’s case it aggravated his autism and he ended up withdrawn and uncommunicative. It took us over a year to help him recover and even now he still has an anxiety disorder on top of autism. As a result of his agoraphobia he ended up school refusing and for a while we felt under suspicion from the professionals that we were to blame. Thank goodness for a diagnosis.
Unfortunately the school couldn’t be bothered to maintain his education and we had to fight them to provide a TA to come into our home and provide some one to one. After that the LEA then provided a home tutor but there is only an allowance of 5 hours of home tuition a week and then it is only provided if there are medical needs (which do include mental health). Five hours is probably enough if you have a short term medical condition but if your child has a long term condition which makes attending school a problem in the long term, 5 hours is not enough at all in my opinion!
This caused us problems for my daughter who is also school refusing due to her school not supporting her. Our ed psychologist wanted my daughter seen by CAMHS and medically declared as unfit to attend school in order to access home tuition but CAMHS don’t want to see her even though she has a diagnosis of asperger syndrome. Fortunately, the LEA have decided to send in a home tutor and I think we’re lucky that we now have one or two professionals who are supporting us (ie ed psych).
All I can to other parents is that if you’re in a similar position, don’t be afraid to push and go to the top of the organisation to get things moving. We had to go to the head of the inclusion service in our local LEA to initiative home tuition for our son and within a week it had been organised. If I hadn’t, my son would have been languishing without any education at all.
Deb
WeHave finally seen a specialist nurse at CAMHS who was not very helpful.My son transfers to secondary school this September and has threatened to kill himself beforehand!Very worrying.He has Aspergers and ADHD and a statement.7.5 hours weekly support until year 6.Awarded 25 hours temporary one to one that will cease at mainstream sec school! my son has severe anxiety and is very articulate and academic.Lacks social skills and emotionally immature through no fault of his own.He now takes himself out of class regularly even with this support and is clearly not coping due to added pressure,transition and perhaps early onset of puberty.I and his ADHD consultant think he may also suffer with PDA or ODD as he is very controlling and manipulative in order to feel safe.CAMHS seem to think ASD diagnosis fits all aspects of my son’s complex condition.I disagree as direct strategies do not work for him creating more anxiety/behavioural problems.Please can anyone advise what my rights are and what I can do to obtain a referral back to an ASD consultant as previous one retired and was not replaced.I am worried he may not cope and may need to be placed in a special needs school initially.My son is anxious about being bullied and being expelled due to not being able to control his behaviour.Also has sensory issues and is very sensitive finding boys too rough to be around.I am wondering if home schooling may meet his needs overall maybe.
Ann