Thursday, 31 January 2013

Mental Health and Autism

I have been asked to define my thoughts on Mental Health provision for Autistic children in Cumbria. 

Putting things on paper always helps me to 'think'. Reading back I can see more clearly when I'm being too subjective or taking things personally so this blog post is slightly different from normal - it's my personal thoughts and experiences of CAMHS in the Furness area.

Following a report in our local newspaper the North West evening Mail about the death by suicide of Ashley Jake Keenan, an eighteen year old boy  with Aspergers syndrome, the outpouring of sympathy to his mother Amanda Morris from the Autistic community was immense. As comments poured in, the newspaper realised that they had a story worth pursuing. Children and adults with Autism in Furness were not getting the support they required from Mental Health services in the area, waiting lists for diagnosis were too long, specialist knowledge in Autism was lacking and parents were dissatisfied. Parents came forward with their personal stories in their dozens and .thanks to social media networks, they realised they were not alone in their anxieties for their children. Four articles were eventually written by Emma Preston with the help of parents of children and adults with Autism and published in the North West evening mail .Those articles  were well balanced and reflected the views of many of the Autistic community. The message we wanted to get across was that we wanted better Mental Health provision in the Furness area for our children who are suffering because the diagnostic process is taking too long, children who have anxiety problems or self harm are not being seen quickly enough and ultimately,partly because of a lack of help and support both from CAMHS and other agencies this is leading in extreme cases to suicide. The content of those articles together with the comments made can be viewed here:

At the same time as parents were making their voices heard, an independent report by the Cumbria Clinical Commissioning Group and Cumbria Partnership NHS Foundation Trust,revealed major concerns about CAMHS which highlighted the shortage of staff (they had less than 2/3 of the staff required) and lack of specialist knowledge in Autism and the department was told to improve..

Two months on, despite promises to 'improve standards', parents still feel that the are getting 'fobbed off' by the service.Their lack of faith in the service (through previous experiences) is immense and damaging ,and the impression that parents are left with is that no one cares about their children and that they must deal with the issues alone.

Last time I visited CAMHS our family was reaching crisis point, my husband was working away and my son was unable to cope with the change in routine . I had taken a sabbatical from my job as a lawyer to try and keep things as 'normal' as possible but my son's anxiety was so great that I was dealing daily  with violent outbursts each evening and my other two children were left to their own devices to avoid getting hurt. I was given an appointment to see a locum who had no notes on my son's previous history and who during the course of our conversation told me I was 'overpowering' and that my son would be better off in school. It was clear that she had little experience of either Autism or Home education and I came away appalled at her judgemental attitude and obvious lack of expertise and very angry.As I result I vowed never to go back to an appointment unaccompanied again.

With the promise of a new restructured system following the newspaper articles in November I decided to give them a second chance.New consultants were to be appointed to improve the service . As my son was not sleeping and was becoming less and less able to go out ( to the point of holding a knife to his chest) when I suggested we go out. I went to see our GP who shared my concerns about CAMHS but told me it was the only route available to him. Because of the threat of self harm he referred us urgently.

 That was in November and we have not heard a dicky bird from them. I haven't pushed them - this is a test about whether or not my son matters. I know at some time we will reach crisis point again and I like many other parents in the area will be on the phone on a daily basis pleading for help for my son only to be fobbed off with excuses about waiting times and lack of staff.

This isn't a new situation it has been going on for years. Perhaps they don't care if my son is suffering or if it is impacting on the mental health of my family. I am told by other parents that they have been told they  will be seen if their children  are suicidal, otherwise there is a wait of a year for a second appointment! Surely it should never get to that point .Fire fighting isn't the way forward, care and compassion is!

What we need is a clear process explaining to parents what services are involved when their child is diagnosed with autism, who they will need to see and how long it is likely to take. A care coordinator needs to be appointed to guide families through the process and to direct families to the next service after a diagnosis is made.That coordinator could provide advice to parents and children in crisis awaiting an appointment.  

Thankfully there is always a ray of hope.The love and support of the NAS Furness parent support group which has blossomed from a need to help each other in an area where appropriate professional help is scant continues to support many parents through difficult times. The advice and support of parents further along the road than ourselves is a lifeline and is proving more practical and caring than anything CAMHS have come up with to date. If any other parents out there feel alone and in need of support log onto and you will find a wonderful community of parents with a wealth of support and a listening ear.

So instead of giving lip service to better service provision for our Autistic children perhaps the NHS should take a leaf out the book of us parents and just get on and do it!

Tuesday, 29 January 2013

Walking for Autism!

In Training for the Coniston 2Barrow
Well for a while the issue of insomnia disappeared. After three weeks of not sleeping my son had had enough so he stayed awake for twenty four hours, slept at the table whilst we enjoyed a Chinese meal for his brother's birthday and got back into routine. That is until about a week ago.What causes it I don't know- it may be anxiety although he seems well in himself, it may be lack of motivation what I do know now is that he is able to regulate it himself if it all gets to much.
Meanwhile I'm pretty much stuck in the house during the day whilst he sleeps so I've set myself a goal- to walk the Coniston2Barrow walk on May 11th together with his twin sister for the Furness Branch of the National Autistic society.I have been allocated a number 7158 and I have started to train.Now I need to lose weight and I need to keep fit so if you see me puffing and panting up Kirkby Fells with my labrador and border terrier give me a wave I need all the encouragement I can get! If you want to sponsor me even better. you can log into the website here  click the button 'sponsor a walker' type in the surname Frost and there we are Yvonne and Evie - no going back now!
With all the sleeping I've been worried about the education side of things but sometimes I wonder why. My son asked me to explain algebra to him the other day. That led to a discussion of the use of 0 as a place number , the use of an abacus in Japan and the introduction of the number system introduced by the arabians. Then  he told me that at various different times St Petersburg has been called Leningrad, Stalingrad and Tsargrad. The first two I knew , the last I did not. He is currently planning to design a computer game based on the Ancient Japanese - so research into the Samuri and Shinto is the order of the day.
And whilst that all goes on his brother and sister have spent the weekend camping in the snow at Frostbite camp. The tents were flooded and they were moved to lodges. the smoke alarms went off at 3.00am, they were prevented by snow from getting to camp on Friday night but despite all that the verdict 'It was 'epic' mum! Bear Ghrylls eat your heart out!