Learning disability and diet - what we as carers know & arguments for care providers who try & opt out

Hi,

This isn’t the paper I keep trying to find but is never the less a useful article - am yet to follow up the references as have only just come across it

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Thank you. The information has come at a really opportune time for me because my eldest son, currently in supported provision, is significantly overweight and has just been referred for blood tests to check for hypothyroidism. He makes very poor choices with respect to food, and is under-occupied (which does not help).

In my husband’s care home, there seems to be very little choice at meal times, and certainly not the type of meals he needs as someone with coronary artery disease.

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Just what I need to get staff to take M’s excess weight seriously. Thanks. Interesting mention of an LD Team dietitian. I don’t think there is one in my area? Will investigate further.

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@bowlingbun , do you have an LD health team?

This is something we’ve been working on with Mike’s staff and with Mike. We’re working to reduce carbohydrates in his diet and to roughly halve the amount of bread and other baked goods in his diet as part of that. He had bread, croissants, bagels, pancakes and crumpets in his freezer!

The thing is, we’ve been up against the issue of whether he can make an informed choice, and the assumption of capacity is part of the rules. As we questioned that assumption, we were able to show that he requires massive adjustments in order to show capacity, and in some cases even that is not enough. However, he has now agreed, with support, to cut back on baked goods. Frankly, I think that will turn his weight issues around without too much of anything else being worked on.

This is what S’s college always say - he chose it/ wanted that much, it’s what he likes etc however he doesn’t understand the health implications so therefore isn’t able to make a fully informed choice. At college they had pastry most days last winter and some weeks have 3 takeaways/ meals out plus hot chocolates etc etc

It’s easy to feed them, get them to agree to a walk around a shopping centre if lunch in Greggs follows etc … it won’t be so much fun when they have diabetes/ high cholesterol when still young

Yes, and No. For years they refused to do anything as I said he had learning difficulties -a as I understood the word “disability” was no longer used. However, it the world of Southern Health, they only dealwith “disabilities”. Then a waiting list, then a doctor’s visit here at home, with M. M told him he wanted support to lose weight, doctor arranged for an LD nurse to visit, who assessed him as having capacity, told him to eat less, and closed the case without first checking any weight was lost. Then I referred again, another long wait. Then I was told they would do nothing unless I asked M for his official permission. As I’m trying to withdraw from this sort of piggy in the middle situation, I said that either SSD or the GP should be making the referral, it wasn’t my job. Suggestion ignored, closed the case again! Now he’s on a “long waiting list”. I looked in his fridge on Monday, there is a huge bag of potatoes, at least 5lbs, on one shelf. When he has baked potatoes I’ve now learned it’s not a nice crispy one done in the oven, but microwaved! Yuk. Twice last week he had “quiche”. Not a nice home made one, but a Lidl version. In fact, his diet is now almost meat free rubbish. I’ve brought his last month’s receipts home, but daren’t look at them right now.

BB, S saw the dietician years ago, they wanted him back regularly to monitor his weight - I said we could do that at home (crazy me taking time off all the time for that) so they discharged him. We had to fill in a food diary - so did college. The dietician was based at the LD clinic. Not sure though is they were an LD trained one or just based there so many days a week.

I don’t know waiting times are like now here. Probably dreadful as all services are still catching up from not seeing patients due to Covid (and the NHS reluctance to see anyone face to face for so long.)

I think a dietician going into college though to work on their menus would be helpful …though the difficulty would be college being willing to adapt it for his IBS.

S hasn’t had constipation at all this holiday as he is eating lots of fruit and veg, drinking enough and moving plenty …

He has meat at college but its all processed - chicken nuggets, Aldi steak bake, KFC, chicken burger Wetherspoons, burger, Greggs chicken bakes, ham sandwiches. When its not processed meat its things like Aldi quiche, pizza. Occasionally its chicken wraps - but I expect that is processed chicken too.

At home he eats mainly homemade stuff except once a week when we have oven fish and chips for dinner (as the food delivery arrives that evening and needs putting away and it used to be my staff meeting after school)

I had experience of residential homes many years ago, and my recollection is that the food was good quality, home made and substantial (many homes had a full time cook). This is why I was surprised by the food served at my husband’s home.

Breakfast is pretty standard: cereal or toast. My husband who struggles to motivate himself, often needs prompting to come out of his room and eat, and he told me he was offered untoasted crumpets with spread and jam one day. He also told me that ‘vegetables’ offered were uncooked packet casserole vegetables.

I do not know the context, and these could be one-off cooking blimps, but the general menu is based more on convenience and economy than nutrition and choice: microwaved fish and chips, warmed up pasties, chicken nuggets and chips, pizza and chips. There is little fresh fruit and fresh vegetables.

I bought my husband some grapes, bananas and other soft fruit because I was concerned about the stodginess of the food offered.

I know staff are on just above the minimum wage, and that cooking for up to twenty residents can be arduous, but I don’t think I would leave my room for long empty days and boring bland food.

Janet, that sums up the food at S’s college day service too.

Hi Janet. part of the problem is that the nutritional requirements are pretty basic, and most people nowadays can’t cook worth a damn because it’s not a skill that’s taught enough. A few years ago, my cooking skills for the home were…limited. In many ways they still are but I’ve taught myself to try different menus and techniques to make our food intake more enjoyable and safer. But where care homes should be forced to employ qualified chefs, they use ready meals, or “convenience” foods. A friend of mine - a qualified chef - worked in a day care facility for a couple of years when his health wouldn’t take working in a restaurant. He came in under budget using fresh veg and good quality meat and fish, where before they were struggling to come in on budget without overspending. That sort of knowledge would save care homes money and improve the quality at least 100%. But the immediate thought would be “too much money.” And so unappetising meals are put in front of people whose appetite is already suffering.

When M’s flat was being redecorated he moved back to my house. In under 3 weeks he lost 13lbs without being hungry. I left full details with staff about what he’d been eating in simple chart form. It’s still in his file at his flat. Ignored. The weight went back on before Christmas. 3 different day services gave him a Christmas Dinner the week before they broke up!

@Charlesh47 , that would’ve made a great documentary

BB - S put on 2lbs Monday to Friday of last week of college day service

@Melly1 Yowsers! Mind you, I did the same on holiday last time…

@Charlesh47 , I think most people put a bit on on a holiday and at Christmas (or other religious celebration) but if he puts on weight every week …

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I took M to a rally Sunday morning, then wanted new clothes at Cotton Traders on the way home at the garden centre. Had planned to buy a meal there but ran out of time, as needed to be back at his flat by 2pm. Explained to staff he hadn’t had lunch, so could they take him out for a PROPER meal somewhere please. (Staff don’t cook vegetables very often). Later he told me he’d had….a baked potato! Not quite a Sunday roast or similar! He has so many baked potatoes at his flat, done in the microwave, there was a huge bag of potatoes in his fridge too. He has £140 for food and activities every week, way more than I spend, and that doesn’t include lunches 4 days a week. So frustrating, especially when he was brought up on home grown organic veg that he helped grow.