Guerrillamum's Blog


NHS told that autism diagnosis in children must improve!

The NHS has been told by the National Institute for Clinical Excellence (NICE) that autism diagnosis in children must improve. You can see the Guardian’s article on the matter here: http://www.guardian.co.uk/society/2011/jan/27/autism-diagnosis-children-nhs-guidance

According to The Guardian, the NICE guidance ‘calls for every child with an autism spectrum disorder to be assigned a case co-ordinator to act as a single point of contact, and to have an individual profile created that sets out their needs.’

Surely they are missing a point? The new guidelines only call for children already diagnosed with an autism spectrum disorder (ASD) to have a case co-ordinator. Don’t get me wrong! I welcome the introduction of case co-ordinators to work with children with ASDs but what about all the other children with equally difficult special needs? I do not think access to a case co-ordinator should be dependent on the child being formally diagnosed, or on any specific diagnosis.

Furthermore the article says that NICE has decreed ‘NHS staff need to liaise more and to engage better with schools, social care providers and voluntary sector organisations.’ They do, but surely they also need to liaise more with parents and families who know their children the best?

A case co-ordinator could be of so much help to families right from the time that concerns are first raised about a child’s condition when they first engage with NHS services. This would result in a diagnosis being made more quickly and in needs being met more effectively. Most parents of children with special needs have to go through a huge learning curve before they can be effective advocates for their children and this process can take years. A case co-ordinator who has experience of how the system works could be such a help to parents and children if they are brought in at a much earlier stage as soon as concerns are raised about a child’s development or condition. This is the time when families most need this help and when they are the most vulnerable. A case co-ordinator could pave the way for a child to access early intervention services. Early intervention is the key to children overcoming special needs at school and in life.

So I say to the new NICE guidelines on autism diagnosis, ‘Yes Please!’, but please don’t discriminate against those children with special needs who do not happen to have an autism spectrum condition, and please bring in case co-ordinators much earlier in the process of the identification and meeting of special needs. It is a fact that most children who have their special needs effectively met have motivated parents who learn to navigate the system for identifying and meeting SEN. Case co-ordinators for all children with special needs who access NHS or special education services would have the effect of levelling the playing field and – (I’m going to use a coalition buzz word here) would also make things much fairer.

If we had been presented with a case co-ordinator when Peter was nine years old, had received his diagnosis and also his statement (that came along straight after the diagnosis), we would have had no use for them. However, the early involvement of a case co-ordinator in Peter’s case would have been invaluable to us and would have saved Peter so much time, distress, sadness and despair and many wasted years at primary school.



Woman’s Hour – so what was it like then?
November 5, 2010, 10:30 pm
Filed under: Radio | Tags: , , , , ,

I would like to say a huge thank you to Jenni Murray and the staff at Woman’s Hour for inviting me to be on the programme today. Never having done anything remotely like this in my life, it was a real adventure! We hadn’t told the children beforehand because we thought it might divert them from their school day, but we needn’t have worried. My husband told them about it on the way home from school in the car but frankly, he says, they were much more excited about going to McDonalds for their tea! Quite right too ….

Having rehearsed my answers to possible questions on Woman’s Hour all week, I waited on my own in an otherwise empty and silent studio for my part of the show to begin. My legs turned to jelly, my mouth went dry and all the carefully prepared answers disappeared. Yes I was incredibly, mind numbingly nervous and despite Jenni’s very helpful questioning I didn’t get to say all that I wanted. Being on the radio is much more difficult than it looks! Fortunately there was another mum on the programme who sounded very calm and said some of the things I would have liked to have said – so thank you to Mencap’s Pam Johnson – I am glad somebody said them, even if it wasn’t me!

However, in the blogosphere I am the mistress of my own destiny. Having failed completely to answer Jenni’s first question, as to why I called the book ‘Guerrilla Mum’, the answer is as follows:

‘The book represents one family’s struggle to get the right support for their children with SEN. This was an extremely adversarial process. The campaign was fought on so many levels; we used the local authority and NHS complaints procedures to get the services our children needed. We appealed (twice!) through the SENDIST tribunal. We also used the local authority’s own policies to justify the things we requested for our children, such as the local authority’s Educational ICT policy when we requested laptops. There was also a battle for the hearts and minds of the teachers and other staff who worked with our children at school. Staff who at first may have seen us as neurotic parents became real champions for our children at school and made an enormous difference to their lives. The book is intended as a guide for other parents to use in their own battles to obtain the help their SEN children deserve, and to spread the word that this is a fight that can be won if you have the right information.’

So that’s it, really. That is the thing that irked me the most. I had let myself get so wound up that I missed my opportunity to say the things I wanted to say and I have felt a bit let down by myself all afternoon. Fortunately for me, I have William my son to put things into perspective for me. He tells me that this sort of thing happens to him all the time, but that the thing is to try to go back and make your point. These are wise words indeed from a boy who really knows what it is to struggle to find the right words. I am lucky that this only happens to me when I go on the radio … so here I am, taking his advice, safe in the knowledge that the main message about the importance of meeting SEN still managed to come across despite everything. And that really is the main thing!

If I am ever invited back, I will send them a letter ….