Way back at the end of August, Grenouille got a letter from the GP surgery, giving the dates for the flu-jab clinics. The annual flu-jab has been a part of our lives since G was a toddler, but this was the first time that the letter had actually been addressed to G, rather than ‘the parent or guardian of G.C.’
It was not written in a style calculated to assist a language-delayed pre-teenager with KS1-level reading skills. Most of the important information was embedded in circumlocutory flim-flam halfway down the page, and had I not been there to help G (a) read and (b) understand it, there is no way that a flu jab would have happened this year. So I called the Practice Manager for a wee chat about how they manage communications with learning-disabled patients. She was on holiday, so no outcome to that one (I must remember to follow it up) but it does make me wonder. They know at the practice – because I have, frankly, been hammering it into them ever since we joined three years ago – that G is absolutely not a standard-issue patient. After much cajoling, and a certain amount of berating, we have the repeat-prescription service almost working properly, and when I phone for an appointment for G, the receptionists have mostly stopped trying to tell me that the next available one is two weeks hence. Alas, it would be stretching the truth way beyond breaking-point to say that the practice as a whole has an in-the-round view of G.
In the same week, a similar lack of coherent vision was apparent in the news of a proposed new ‘autism hospital’ in Mostyn, Wales. This not-yet-realised vision seemingly rests on the still-widespread premise that removing an autistic person from everything familiar, eliminating the support of their personalised routines and putting them into a glass-and-steel box with 99 similarly discombobulated others, is likely to ‘help (with) recovering from a mental illness’. Er, what? What???
Among other brain-bendingly through-the-Looking-Glass statements about the future Mostyn hospital, came this one from Andrea Dishman, CEO of Earlswood Healthcare, the prospective providers, immediately after it was noted that ‘The centre would take NHS and private referrals and would cater for people from across Wales and the North West of England.’
‘ “We do wish to support local people,” said Andrea. “At the moment, people who need help are put in placements up to 50 miles from where they live which isn’t good for their recuperation, as it’s family and friends which can often help people overcome their illness.” ‘
Hmmn. Yes and no on the family-and-friends thing. Connor Sparrowhawk was just around the corner from home when he was in a mental-health provision; but his family were not encouraged (indeed, were not always allowed) to visit him, much less contribute to his recovery. But supposing Mostyn were to encourage family-and-friend involvement, how likely would the patients be to benefit from such involvement?
Well, I’ve no idea where Ms. Dishman lives, but even if it is south of the Watford Gap and her non-metropolitan geography is consequently a bit vague, she need only take a quick glance at a map to see that not even a quarter of ‘Wales and the North-West’ is within a fifty-mile road journey from Mostyn. The fifty-mile-travel area stretches from Caernarvon in the West, to a little beyond Oswestry in the South, to Crewe in the East, to somewhere short of Wigan in the North. Liverpool is within fifty miles’ driving, as long as the Mersey Tunnel remains open, but Manchester is over sixty miles away. A more reasonably ‘local’ radius of 25 miles starts at Conwy, passes a little south of Ruthin, and gets no further than halfway up the Wirral Peninsula. The only town of any size within that area is Chester.
From Welsh Cardiff, Mostyn is 225 miles by the motorway, or 170 miles (and an even longer travel time) if you take the A roads. From Northern Carlisle it’s 166 miles, and from somewhere more rurally North-Western like Whitehaven it’s 188 miles by road, with travel times, even in good conditions, of several hours. Public transport takes half as long again, and involves three transfers in each direction. Such logistics mean that including the families and friends of patients in their treatment is likely to be more than a leetle problematic.
What’s more, this hospital is only for people with autism and a mental illness. Hear Ms. Dishman again: “People with autism suffer from mental illnesses just like the rest of the population. At the moment they’re treated at mental health facilities, but they don’t have the specialist knowledge to fully support people with autism.”
Granted, support in general hospitals for people with autism is poor, but setting up what is in effect a large – 100-bed! – Assessment and Treatment centre which ‘would cater for stays of up to six months‘ (yeah, right) is absolutely not the way to go.
Here’s a thought experiment for you: Substitute ‘physical’ for ‘mental’ in that quotation above, and then try to imagine dedicated autism hospitals with an autism-specific A&E, backed by a full range of departments – from anaesthesia to urology – staffed exclusively by autism-trained professionals. How long did it take you to start laughing? Exactly. It’s patently absurd; and equally patently obvious what’s needed is for all staff in any hospital to have basic equalities awareness so that they can respond to the needs of each patient as an individual, with backup available for treating professionals when they come to the boundaries of their knowledge and need extra help.
Yet the idea of segregated environments for people with differences – whether those are due to autism, learning disability, or old age – remains popular. Rosa Monckton talks of ‘small, protected and intentional communities’ for vulnerable adults. Now, when it comes to evicting people from places where they’ve lived for years, she may have a point. People fear the new, for good reasons. Hauling them out of a familiar environment where they are comfortable and happy, in pursuit of an ideology, is absolutely unacceptable. That is why under the LB Bill – formally the ‘Disabled People (Community Inclusion) Bill 2015’, if a group of disabled people were to decide for themselves that they wanted to live in communal setting, that choice should be respected and facilitated. It shouldn’t, however, be the only option available to them, and certainly shouldn’t be a Hobson’s choice imposed on them, will-they, nill-they. The creation of new living facilities of whatever type should be in response to need, not a build-it-and-they-will-come approach, which risks turning into a build-it-and-we-will-damn-well-shoehorn-them-into-it scenario. Decommissioning of services should equally be triggered by changes in the needs of residents, not by externally imposed policy.
Sending out a poorly-written letter to a disabled person without thinking properly about it is bad enough. Implementing policies so poorly thought through that they appear not to have involved any thought at all for the people affected by them, is so far beyond ‘bad’ that I am stumped for a sufficiently opprobrious word, so let’s keep it simple.
We don’t need the building of new ghettos: ghettos that will ‘have’ to be filled in order for social capitalists to see a satisfactory return on their investment; or if not filled, must be sold off from under residents to cut costs. And we most certainly don’t need people displaced by such arbitrary decisions to be auctioned off to the lowest-cost ‘care’ provider.