So we are all familiar with Stephen Hawking and the machine that allows him to speak. What you may not know is that there almost 21,000 people in the UK alone who need such a machine – commonly known as Augmentative and Alternative Communication (AAC) devices. And the main reason they don’t have one is cost. Much of the time they are dependent on the heath services to even speak.
In 2012 I made freedom of information requests to every Primary Care Trust (as they then were) to find out what the AAC landscape looked like. All the information went into the Domesday Dataset. Dates and details, makes and manufactures, prices and provenance.
The Domesday Dataset, which lists every AAC device that the NHS purchased between 2006 and 2012, remains the richest source in the world of real data about Augmentative Communication at all levels.
When I released the dataset there were some things that particularly shocked me.
It was quite an emotional project… responses ranged from heart-warming (South Tees Hospitals NHS Foundation Trust lists the funders of a laptop used for speech therapy as “Provided by IT Department”) to chilling (Norfolk PCT stated “many patients have chosen to be
reliant on care staff to interpret their needs via the use of closed questions” (https://www.whatdotheyknow.com/request/92957/response/253036/attach/html/2/Communication%20aids.xls.html)
But the shocking thing was finding out that although, there were many areas with good provision (Bristol springs to mind) the NHS Trusts of County Durham, Hull, Surrey, Trafford, Hertfordshire, Kingston, Mid Essex, Newham, Nottingham City, South Tyneside, Tower Hamlets, Wandsworth, Wirral, City and Hackney, Richmond and Twickenham, purchased no aids at all in the years requested.
None at all. I have close friends grew up in those areas and needed AAC.
So who might be willing to take responsibility for this? Well we should certainly find out.
With the aid of Twitter we worked out the set of Westminister constituencies that are covered by each of those Primary Care Trusts (PCT), Thank you everyone who helped with that.
The line I’ve been getting from a lot of people is that the CCGs that replaced the PCTs are a complete reorganisation of the system – but my thing is that it is the same SLPs and the same managers and the same people making the decisions and I think it’s worth checking…
So let’s look at the MPs constituencies that are in those PCTs. If your MP appears in this list then feel free to contact them using the link provided 🙂
|County Durham||Bishop Auckland||Helen Goodman||Lab|
|County Durham||City of Durham||Roberta Blackman-Woods||Lab|
|County Durham||Easington||Grahame Morris||Lab|
|County Durham||North Durham||Kevan Jones||Lab|
|County Durham||North West Durham||Pat Glass||Lab|
|County Durham||Sedgefield||Phil Wilson||Lab|
|Hull Teaching||Kingston upon Hull East||Karl Turner||Lab|
|Hull Teaching||Kingston upon Hull North||Diana Johnson||Lab|
|Hull Teaching||Kingston upon Hull West and Hessle||Alan Johnson||Lab|
|Surrey||East Surrey||Sam Gyimah||Con|
|Surrey||Epsom and Ewell||Chris Grayling||Lab|
|Surrey||Esher and Walton||Dominic Raab||Con|
|Surrey||Mole Valley||Paul Beresford||Con|
|Surrey||Runnymede and Weybridge||Philip Hammond||Con|
|Surrey||South West Surrey||Jeremy Hunt||Con|
|Surrey||Surrey Heath||Michael Gove||Con|
|Trafford||Altrincham and Sale West||Graham Brady||Con|
|Trafford||Stretford and Urmston||Kate Green||Lab|
|Trafford||Wythenshawe and Sale East||Mike Kane||Lab|
|Hertfordshire||Hemel Hempstead||Michael Penning||Con|
|Hertfordshire||Hertford and Stortford||Mark Prisk||Con|
|Hertfordshire||Hitchin and Harpenden||Peter Lilley||Con|
|Hertfordshire||North East Hertfordshire||Oliver Heald||Con|
|Hertfordshire||South West Hertfordshire||David Gauke||Con|
|Hertfordshire||St Albans||Anne Main||Con|
|Hertfordshire||Welwyn Hatfield||Grant Shapps||Con|
|Kingston||Kingston and Surbiton||Edward Davey||Lib|
|Kingston||Richmond Park||Zac Goldsmith||Con|
|Richmond and Twickenham||Richmond Park||Zac Goldsmith||Con|
|Richmond and Twickenham||Twickenham||Vincent Cable||Lib|
|Mid Essex||Braintree||Brooks Newmark||Con|
|Mid Essex||Chelmsford||Simon Burns||Con|
|Mid Essex||Maldon||John Whittingdale||Con|
|Mid Essex||Saffron Walden||Alan Haselhurst||Con|
|Mid Essex||Witham||Priti Patel||Con|
|Newham||East Ham||Stephen Timms||Lab|
|Newham||West Ham||Lyn Brown||Lab|
|Nottingham City||Nottingham East||Christopher Leslie||Lab|
|Nottingham City||Nottingham North||Graham Allen||Lab|
|Nottingham City||Nottingham South||Lilian Greenwood||Lab|
|South Tyneside||Jarrow||Stephen Hepburn||Lab|
|South Tyneside||South Shields||Emma Lewell-Buck||Lab|
|Tower Hamlets||Bethnal Green and Bow||Rushanara Ali||Lab|
|Tower Hamlets||Poplar and Limehouse||Jim Fitzpatrick||Lab|
|Wirral||Wirral South||Alison McGovern||Lab|
|Wirral||Wirral West||Esther McVey||Con|
|City and Hackney Teaching||Cities of London and Westminster||Mark Field||Con|
|City and Hackney Teaching||Hackney North and Stoke Newington||Diane Abbott||Lab|
|City and Hackney Teaching||Hackney South and Shoreditch||Meg Hillier||Lab|
That’s 63 constituencies, almost 10% of the total seats in the parliament. In those 63 constituencies the NHS provided not one single item of equipment for AAC.
As I said above… I’ve been hearing people say that the CCGs that replaced the PCTs are a complete reorganisation of the system – but my thing is that it’s the same SLPs and the same managers and the same people making the decisions and I think it’s worth checking.