Back in May of this year 2 months after Charlie was diagnosed when I realised what the gaping hole was like after diagnosis. The big huge hole that is wanting for us, full of all the empty promises of help and support which we had heard over many years.
When it finally dawned on me that NO getting a diagnosis was not the key to finally getting the help we had been asking for since he was born. And no it was not the fault of all the professionals who had made the promises to us. I still to this day think that most of them genuinely believe that once you have a diagnosis you will automatically get some help or support. That something or someone will be there to catch you.
I had spoken to both Charlie’s paediatrician and Neighbourhood Early Years Service (NEYS) asking where the help and support was that we had been waiting for for so long and they had both begged me to complain, the problem was that I didn’t even know who to complain to.
In the end when I was at work one day, after having had a conversation with the paediatrician I completely lost it, I lost my calm, I lost my fight, I lost the mask i had been carrying around with me, I lost all pretence that everything was ok and I just broke down and cried.
I am blessed at work to have really great colleagues, these people, the volunteers and staff at the charity where I work are amongst my closest friends and my best support group. My manager is an amazing man and truly one of the best people I have ever had the privilege of working alongside, he is hardworking, sensible and compassionate. He is the kind of person who you can count on to come up with a fresh idea that is both helpful and useful. He suggested that I write to my MP and try to flag up to him how difficult the situation is.
So Instead of working that afternoon I sat at my work computer and banged out the letter below. I sent copies to my MP and also to anyone else I thought needed to know. The people who had been involved in the diagnosis process, the clinical commissioning group, healthwatch, and the people who had begged me to speak out the paediatrician and NEYS.
I have put a copy of the letter at the end of this blog.
Yesterday afternoon there was a market place type event on in liverpool football ground which was supposed to be for parents and carers of disabled children, the city council had put it on for people who provide services for children to give out information. They had obviously advertised it very poorly as once again, they were all really surprised that I was a parent! Apparently I was only the 4th parent they had seen all day.
Anyway I did my networking thing and I have managed to get hold of and speak to a woman called Sarah who is the commissioner for children’s services in liverpool city council. I told her how frustrated I was with how poor the services are and how annoyed I am that we still can’t access any help.
Sarah introduced me to the lady from NEYS, as soon as I said my name she knew who I was, she said “oh you’re the mum who wrote the letter that made everyone in our office cry!” She thanked me for writing the letter and told me that she was so sad that so little has changed since her own children were small. Her daughter is 22 and only just got a diagnosis and still struggles to access any help for her.
She gave me some numbers to call, and some more ideas on how to access help, she gave me a big hug and assured me that I was doing the right thing in the right way.
Dear Mr Twig
I am writing to you today, as one of your constituents to raise my concerns about the level of support and early intervention available in Liverpool to children who are diagnosed with Autistic spectrum disorder. ASD is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a neurological condition which is sometimes referred to as Autism or Asperger’s.
My son Charlie was diagnosed in March 2013 with ASD, the reason we were referred for diagnosis is that Charlie has had many problems with eating since birth. We have over the last 4 years been passed from pillar to post seeking help and early intervention for Charlie. We have attended many appointments and clinics, we have been given lots of advice which we have done our very best to implement on each occasion we have asked for therapists to work directly with Charlie through play therapy/ occupational therapy / systemized desensitization however we have always been told that none of these therapies are available to us. We have attended parenting courses and support groups but we have never been able to access any direct help for Charlie.
Charlie was diagnosed at a panel meeting on 13/3/13, we were told of his diagnosis over the telephone, and a week later collected a letter from a speech therapist. We were not offered any support or counselling with the diagnosis. Whilst the speech therapist was very sweet, caring and concerned for our welfare I do not feel that she is the most suitably qualified person to deliver this kind of news to parents or that the best way to give such an important piece of information is in a telephone call. The diagnosis letter was extremely vague with very little in the way of advice or information included and nothing specifically related to eating. We were told that we would be contacted by the ASD pathway and that now we had a diagnosis we would be given more priority to access their training courses. The speech therapist later met with us to give us some information and advice she has found related to eating, but still no offer of any direct help for Charlie.
A month later we had still heard nothing from the ASD pathway, when I called them we were told that they had not received Charlie’s diagnosis letter, that they had no knowledge of Charlie and that his name was not on their database. I then contacted the speech therapy department myself to organise for the ASD pathway to have a copy of Charlie’s Diagnosis letter. When I spoke to Dr W Charlie’s paediatrician from Alder Hey (the children’s hospital) yesterday she was unaware of Charlie’s diagnosis, and did not have even his diagnosis letter in her file, I find it totally inappropriate that I should be telling my son’s paediatrician of his diagnosis and not the other way around.
We have in the last 2 weeks been contacted by the ASD pathway to inform us that the next available training courses for parents won’t start until September, more than a year since Charlie was referred. We were told that the courses are oversubscribed; we are not guaranteed a place on the course and that if we don’t call on the day that we are told about the course to book places then most likely they will all be gone and we will have to wait again. I asked the lady from the pathway about access to early intervention therapies for Charlie and she has told me that there are non-available.
The diagnosis letter stated that “A copy of the ASD Pathway information pack to be sent to the family” If such a pack exists we have still not received it, the only thing we have had from the pathway is a letter about their training courses, and a list of their drop in times.
We have asked the school which is a sure start Children’s Centre, to give Charlie support, however we are told that they do not have the resources to give him any additional help or support, he gets to spend only 5 minutes a day with 1:1 support the same as all of the other typically developing children in his class. As far as I can tell this is really not enough to make any noticeable difference for him. Charlie was placed in the nursery school with a play plan to help him with his eating and for the last 2 years he has made no progress in this area.
We are unclear as to how Charlie is developing educationally. We were lead to believe that it is standard procedure for a child to be assessed by an educational psychologist as part of the diagnosis process, however Charlie was not even seen by an educational psychologist as part of his diagnosis, and is not currently waiting to be seen which means that we have absolutely no idea where he is up to educationally or where we should best direct our limited resources to help him. Charlie’s diagnosis was made by a panel of people who had never even met him.
I feel so frustrated and let down by the way we have been treated, being passed around and referred from one person to another. That Charlie’s diagnosis was made without an educational psychologist’s assessment by people who have never spent any time with him, that we have to wait for such a long time before being offered training courses, and that administrative mistakes have caused us to wait even longer than is necessary; for example Charlie’s diagnosis not being sent to the ASD pathway or to his paediatrician. But the thing that is especially frustrating is that there are absolutely no services available for our son to access now that he has a diagnosis.
It is very clear from our personal research that early intervention and access to therapies such as occupational therapy, ABA therapy etc. is the best method for helping children with this condition and ensuring that they have a really good outcome for their lives. Charlie is now 4 years old, the window of opportunity for “early intervention” is closing quickly. I feel sad and let down for my child and for all of the other Liverpool children who without access to early intervention will live with the consequences for the rest of their lives.
Please do not write back to me offering any more information about ASD, advice or support for myself. I know where to get information from; I have been to support groups, I have read many books and researched the subject myself, I have paid to access training courses because I feel that a year wait is totally unacceptable, I have paid to see private occupational therapists as I could not access one through the NHS in Liverpool. I do not need any more information; I specifically want to have a full educational psychologist assessment and report, and access to therapies and to professionals who will work directly with my child. I do not understand why there are no such therapies commissioned in Liverpool. I do not understand why parents are expected to pay for every therapy and intervention out of their own pocket.
Please can you let me know what can do to help me to improve this situation? Are you able to ask questions on my behalf as to why clinical commissioners in Liverpool do not commission services for children with autism, or why it is so hard to access extra support in school?
Parent of Charlie