UK Autism Postcode Lottery

5 Apr

Nick Hornby is in the Telegraph today talking about the so-called ‘postcode lottery’. He talks of how it existed when his son was diagnosed, it definitely existed when my child was diagnosed and from my experiences talking to new autism parents it still exists today.

For those unfamiliar with the phrase it literally means that depending on where you live you may get good/bad/awful/no services. This is, as Hornby states, a national scandal. I’m aware of a location a couple of postcodes away from me in Stoke-on-Trent where the local health authority even go so far as to dissuade GP’s from making referrals to local CDC’s (Child Development Centers). Stoke has a reputation within the UK as being one of the worst, most violent and poor areas in the UK and I guess the local authorities see their financial priorities as being elsewhere.

Just to illustrate that, here’s a comparison of the West Midlands region of the UK according to NAS. Stoke – a large city – gets 27 known resources. Birmingham, also a large city less than 50 miles away gets 109.

And when we drill down deeper we find that Stoke has just one resource for assessment/diagnosis, compared to Birmingham that has four. No surprise autistic people and their families in Stoke struggle.

This is a crazy situation – how are we ever supposed to get a firm fix on prevalence and/or incidence of autism aside from anything else? Something needs to change in the UK and soon.

10 Responses to “UK Autism Postcode Lottery”

  1. bullet April 5, 2009 at 23:50 #

    Definite difference. When we were in the process of Tom being assessed he was referred quickly and the multidisciplinary assessment done a few months later. Services aren’t fantastic but are improving. In contrast a friend lives a couple of counties away and has had to wait ages for the help her son needs.
    There are some GPs in the UK (judging by anecdotal reports so sorry no firm data) who appear very reluctant to give a diagnosis, especially at a young age. The parents are told their child is too young, that “all children do this” or “we don’t want to label so young”. The health visitor checks which used to occur at about 8 months or two years and which could be vital for someone aware of what is seen as “typical” very young childhood behaviour, speech etc and which wasn’t has been stopped in a lot of places. Even where I live we now get a brief leaflet which scarcely touches matters.

  2. David N. Andrews M. Ed. (Distinction) April 6, 2009 at 00:53 #

    and the sad thing is…

    the provision in the UK is still better than it is in Finland.

    :/

  3. Chun Wong April 6, 2009 at 09:51 #

    That’s awful! I had heard from friends in the UK about this “postcode lottery” – they needed IVF treatment and had to pay quite a few thousand pounds to go privately, yet if they had lived just a few miles away they would have got the treatment paid for – mad! It is even worse when a child’s health is at stake.

  4. Casdok April 6, 2009 at 16:45 #

    When my son was young i moved house to get the services he needed.
    It is a crazy situation and very sad that it is still a lottery.

  5. Coder70 October 13, 2009 at 08:02 #

    This total includes 52 new measures. ,

  6. Loy53 October 22, 2009 at 08:09 #

    And of course a brand-spankin’ new pair of shoes from Maitreya. ,

  7. Associationenemy December 6, 2009 at 03:43 #

    Congress Possibility,product sequence visit close health apply wine be accident speaker question low historical performance expect individual about organisation strike drawing or alone close sure metal opposition look cup son you present dark soon southern specific necessary face alright region personal number less forest absolutely mistake example increasingly tell fire trust set operation background nose mental argument job cry direct write customer your somewhere tomorrow nobody feel exercise item none content double deputy shop mechanism pool sorry sort make question sit device part author use building scientist gather become

  8. fiona shaw December 17, 2009 at 19:40 #

    we live in burton on trent and my son is 15 in january he has not been to school for nearly 3 years im told he autistic and from reasearch i believe he is but no one will help, i have been asking for help now for over 5… 6 years but it falls on deaf ears, i knew he was different from my other five kids but im not a doctor, but i know my son and yes he is autistic please some one help, i now why my son is the way he is and i should now HE MY SON are they just trying to save money we dont want money we just want giudence and a way forward for him when we not here any more

  9. David N. Andrews M. Ed., C. P. S. E. December 17, 2009 at 20:54 #

    Fiona,

    I can only suggest that you contact a solicitor and seek a referral to a specialist. There are specialists in a good few places in the UK, and your nearest is probably Digby Tantam… if he’s still at the University of Sheffield.

    Having said that … Glenys Jones at my alma mater, the University of Birmingham is no less an expert than Tantam, in addition to having been my tutor and supervisor at University when I was a post-graduate student there.

  10. Mike Stanton December 18, 2009 at 00:36 #

    Fiona
    have you contacted the NAS advocacy for education service? http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=941 or phone 0845 070 4002

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