Becky Skipwith, Beyond Words’ Managing Editor, writes that we should be using all the tools at our disposal to support people with learning disabilities to access good quality health care.
It shouldn’t be surprising that lack of access to good healthcare leads to chronic ill health, missed acute conditions and premature death. It’s the scale of the loss, though, and the specific vulnerabilities of the LD community, that demand everyone’s focused attention.
Last week a friend of mine, referring to LeDeR and the health inequalities that we are all discussing, said to me: “We all come into this world. We should be treated the same.” I know what she means – she’s talking about respect and about outcomes. You could turn it around, though, and say that we should all be treated differently but in such a way that the result is the same, whether that result is attending a screening appointment, consenting to an examination, or simply knowing your body well enough to notice and talk about changes.
When it comes to communicating with people about health, it’s important to try everything you can, recognise that everyone needs something different, see what works for the person in front of you, tell people about it, and use it – again and again and again.
Away from Beyond Words, I work with a group of people with learning difficulties (including my friend above) who make accessible information: easy words with key concept pictures, also known as easy read. Recently, prompted by Beyond Words’ collaboration with Access All Areas, we spent some time thinking about the social history of people with learning difficulties – the long-stay hospitals, the dehumanisation – and considered how a shift of information and communication into people’s own hands can create change. Information is power, we decided, because punchy slogans are a big deal for us. We thought about how, conversely, a lack of information removes power and access to basic rights, such as community, a stable home and good health.
There are tensions in the world of communication resources with different approaches often set up in opposition to one another. Organisations are protective of what they do – rightly so when income from paid work can keep user-led organisations afloat in the absence of local authority funds. However with 1.5 million people with a learning disability or difficulty in the UK, all of whom have the right to the same good health as the general population, we should surely welcome as many different approaches as there are different needs. Many approaches can in fact support and enhance one another, as is the case, for example, with Books Beyond Words and easy read information. Our picture stories do provide information, but the main aim of the books is to open up conversations – conversations that make it possible to check for understanding in a situation, support decision-making, share experiences and explore feelings. The value of easy read is in giving more detailed and specific information in a format that works for a wide range of people. Embed complementary approaches like these in the context of an open interpersonal interaction and it’s hard to go wrong.
I try to involve my easy read group wherever I can in the development of our books at Beyond Words, and like the majority of our readership, they understand the power and purpose of the stories instinctively. They see no conflict between our books and their own work, in fact they hardly recognise a relationship between them at all, except that both show respect and offer power and access.
At the same organisation, I used to work with a group of women with learning difficulties who lived independently without support. These are the women who will turn up at the doctor’s surgery without a supporter – or may not turn up at all. We once spent a meeting reading Looking After My Breasts together. At the start of the session I didn’t know that one of the women had received her first screening invitation about a week before, but more or less decided not to go. The story gave her an opportunity to think and talk about her worries with the other women, several of whom were quite a bit older. They confirmed in no uncertain terms that it was bloody uncomfortable, but ultimately no big deal, and at the end of the meeting she’d decided to go. Of course, if she had a lower reading level, she wouldn’t have understood the letter in the first place since it wasn’t even close to easy read. That’s two approaches before you’ve even got inside the screening van.
This LD week we’re offering 20% off all health-related books and book sets. Use them. Use them at home, in your groups, at the surgery, in the hospital, before, after, during. Read the whole story; read the little chunk that’s relevant; look at a single picture that means something to the person in front of you. Use the other stuff too: easy read, videos, role play, personal health profiles, Talking Mats, pictures you’ve printed from the internet. Something will work and it could make the difference between a quick check-up and one that shifts power and changes a health outcome.
Take a look at our campaign with Dimensions #MyGPandMe – a call to make training in learning disability and autism BY people with learning disability and autism compulsory for primary care health care staff: https://www.dimensions-uk.org/get-involved/campaigns/make-gps-accessible-mygpandme/
You can also ask your MP to support Norman Lamb MP’s early day motion to make this training compulsory: https://www.parliament.uk/edm/2017-19/1365