Advocacy and annual health checks are vital.
Let’s begin this post with a boring but highly relevant title! This leads on to what is usually a fairly rambling post, but reaching the (title) point towards the end.
My main focus of this post is the unbelievably weird and gentle and kind man that is my baby brother.
There we are, being adorable.
Charlie is 21. He works in Asda full time and has done for a couple of years now (if he reads this, I’m sure I will be corrected to exactly how many months), he’s the tallest of the family at nearly a foot taller than me. He is obsessed with musicals, doctor who, the stock market comparisons for different food stores, blue-link wikipedia binges, and of course - experiences in retail. He also loves hugs. And dogs!
Also, for those who don’t know him (skip if you do), he has autism and learning disabilities. He’s also had hypotonia (low muscle tone) since he was a baby, so his posture continues to be poor and he wears splints on his legs and super-cool (and MASSIVE) pedro boots to support his weak muscles. He has (very well managed, currently) issues with obsessive compulsive disorder and anxiety and (the main focus of this post), he was recently diagnosed with ulcerative colitis.
So, let’s talk about this last point because it leads onto THE point.
Ulcerative colitis is one of the inflammatory bowel diseases where your body has a reaction to normal bacteria, and believes it is foreign and starts fighting it, an autoimmune condition, causes inflammation and ulcers along the rectum/colon and upwards. It is life-long, and can go through long periods of not affecting daily life until a big flare up will (unless you’re Charlie), put people with UC in agony, spending most of their days on the toilet, often anaemic due to bleeding inside the colon, and sometimes results in hospital admissions for anaemia and dehydration - but for people diagnosed with UC results in a huge increase of medications during a flare up to get on top of it, limited social life or work during that period until there is a handle on it again.
Now, for Charlie’s and your sake I won’t go into the details of his bowels - but I will tell you that symptoms for this had began probably as far back as last May. Charlie had been excreting blood ever since, and spent a good portion of his day in the toilet. To begin with, it wasn’t that awful or that obvious - and we, his family, did not know. Fast forward to December 2018, and we are all sufficiently concerned about it. Mum had taken him to the GP, only to be fobbed off that it was another issue of constipation and ‘probably’ haemorrhoids (obviously, they did not check), just take extra laxatives. Charlie was spending a huge amount of his work time in the toilet by this stage, and his employers are amazing with him but it’s not ideal, he has also had embarrassing episodes occasionally, and we - his family - were all too aware of the blood that continued leaving him due to the patterns around the toilet (TMI?). So, when my sister came home after christmas we started a bowel chart for him - and the truth was outed, many times he was visiting the toilet, it was just blood and nothing else. We also got a true picture of how many times a day. Then, I took him back to the GP, a summary of the bowel charts in hand and decided on not leaving until further testing had been ordered. It was, and then a couple of weeks later I attended the colonoscopy with him where - yes, it was confirmed, that our poor boy has ulcers extensively, and that was the cause of the bleeding (another concern was obviously the C-bomb), treatment was to be commenced immediately. Now Charlie will be on life-long medication and management, but a lot of that will be done by us his family. He can take the tablets, sure, but he will not notice or be particularly bothered for another flare up so we have to keep on top of that and manage any other complications. Mum has taken him to follow up appointments at the IBD clinic, and thankfully the GP are now taking it seriously.
But this leads me onto my point.
Adults with learning disabilities qualify for annual health checks, and they are SO SO important. But the how and when and who with is important too. Charlie is a very able man, he’s really intelligent and he works - but without us (his family) being advocates for him, we still would not be at this stage. People with learning disabilities need their GPs to advocate for them, but this requires an understanding of the processing abilities of that individual and - we all know - GPs do not have time. Charlie comes across so able, so when healthcare professionals ask him questions about his bowels or other health aspects, he will answer the question - but that doesn’t mean he’s understanding and often the point is missed. Abby (my sister), when discussing the issues with him broke it down into words and phrases charlie understood, so we could get a proper picture of what was happening, and when I took Charlie to the doctors and for his colonoscopy I spent the time interpreting to Charlie what the doctors meant, and vice versa, and re-wording questions to Charlie so he could give the true answer. Sometimes that is all being an advocate involves. Without my mum, my sister and I doing this, we still probably wouldn’t have gotten any further. Charlie does not feel pain, part of his autism (and no, all people with autism are not the same and some feel pain acutely), but that meant he wasn’t giving standard answers or putting the urgency on that most people with this condition would - he was just getting on with daily life.
This is a problem, not just for Charlie, but for people with a huge range of disabilities and learning disabilities - and it’s vital those who know them become advocates. An annual health check is great, but without an advocate for those who need it, huge things can still get missed - and a reminder that people with learning disabilities have a life-expectancy 20 years shorter than those without - and a big part of this comes down to their health needs not being met. If you are a carer, a family member, a friend, a nurse, a doctor, an OT, etc etc - any person close to those with learning disabilities, with a professional responsibility and without, just check that they have a good advocate, and talk to them and their advocate about concerns so that they are properly treated, promptly - and if they don’t have an advocate, it is our shared responsibility to ensure somebody steps up to the plate!
Thanks for coming on this ramble with me, it’d probably be more concise... but I must get ready for work.
