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I’ve been thinking a lot about health lately

Discovery Latest
30 October 2019

Personally, I’m of an age when I should have had a wellman check-up. I haven’t. I guess that’s because whilst it’s important for me, it’s not yet important enough to me. I consider myself healthy enough, but do I really know?

So, I’m in no position to preach but I do want to share some awful nationwide health data relating to people with learning disabilities and autism and to talk about what this means for us in Discovery.

I think it is outrageous that men with learning disabilities live 23 years less than the general population, and women with learning disabilities live up to 29 years less. In fact, people with learning disabilities are five times more likely to end up in hospital for preventable issues that can be treated by their GP. For example:

• People with learning disabilities are very unlikely to have smear tests and other screenings.

• Up to 35,000 people may be wrongly prescribed psychotropic medication.

• And over half of all people with a learning disability suffer from long term constipation.

When did you last have a good day when you were constipated or sick? It’s impossible isn’t it? Good days, in my experience, don’t happen without good health. And Discovery and all other providers should give people lots of good days.

That’s why Discovery with Dimensions, through our #MyGPandMe campaign and other networks, is providing a huge range of practical communications resources for support workers and is lobbying for mandatory learning disability training for GPs and other professionals. It’s why in the next round of the Discovery Community Fund we are looking to fund local health initiatives. And its why, when Activate training rolls out later this year, you’ll find that Health is front and centre.

I haven’t yet reported back on the findings of the 2019 family survey. But it’s fair to say that many families don’t feel sufficiently involved in decision making around health. Sometimes they’re not even aware of appointments.

That is why I would like to tell you a short story.

Sarah urgently needed an intimate test but she has a real fear of doctors. Her team helped her understand what would happen through a mix of literature, such as Beyond Words and role play. They familiarised her with the building and staff in advance. On the day her support worker laid on the table and the gel was put on her tummy first. This showed Sarah it was all going to be okay, and she got through the test.

Sarah’s support was excellent and if everyone with learning disabilities had the same quality of support, perhaps those mortality figures wouldn’t be so awful. Sometimes it can take months to help a person prepare for a procedure, to build relationships between surgery staff, support teams and the person. A lot of time, but priceless.

I could have told you instead about Katy, who had been on psychotropic medication for years. No-one knows exactly why. Since challenging her GP and going through a STOMP medication reduction plan, Katy has become a very different person.

Everyone’s situation is unique. My question is this: could the person you support, or your loved one, be in better health? If so, what is getting in the way and what gradual steps could you take, planning together with the person and their circle of support, to do something about it? And if you have already told us this, are we responding well enough? Let me know.

Luke Joy-Smith, Managing Director