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Obesity - Carers UK Forum


For issues related to specific conditions and disabilities.
My caree, my brother, is obese. I haven't been successful in finding much information on the topic, but I want to describe some of the problems in case someone wants to read about them in the future. I realize that obesity is a red rag to some people, and I would appreciate that I want to write about the problems, not what diet the obese person needs - please start a separate topic for that! And just don't read all the details if it makes you angry. The only reference I found on this forum was to the National Obesity Forum, which I hadn't heard of, which appears to have vested interests.

First, my brother's history. He is now 80 and bedridden. He has a ceiling hoist and a shower chair and big wheelchair. He sits up in the wheelchair some of the time but can't manoeuvre it. He is probably less than 30 stone. He doesn't eat much because he has less appetite than he did. He was a huge, broad-shouldered child and had food problems even as a child, though he played rugby and did not seem obese. He was seriously obese from at least his thirties. When he was about fifty he had had some motorbike accidents breaking shoulder and legs and having thrombosis, problems that are serious today. He went to a hospital in London for a whole year in his fifties, where he was put on a 500-calorie diet and written up in medical journals. I expect the rate of weight loss slowed down over that year. Nowadays he would get a gastric band or bypass, but this was in the 1980s. He reached a normal weight and left hospital with no advice on exercise and only a brief austere diet description. I think after subsisting on 500 calories you do have to eat austerely or you put all your weight back on. He did in fact put all the weight back on and his health would have been better if he had not gone on this diet. He retired as disabled before he was sixty.

The situation now is that he cannot weight-bear, is bedridden and has a ceiling hoist. His weight is under 30 stone. He does have arthritis and has had gout, and is a tablet-controlled diabetic.

My real issue is why we hear all the time about obese people, and yet the local ambulances and hospitals are not able to deal with them sensibly.

We have a fairly easy access through French windows and garage, we have had part of the lawn reinforced so wheelchair or stretcher doesn't sink in.

Examples: no hospital has been able to weigh my brother since 2011. One had a hoist with a weighing function but it was broken. Brother is confused and thought his weight was 95 kg (actually it was 195 kg in 2011), and this was entered in the computer when he was to get blood-thinning medicine because the nurse believed him.

Paramedics are not allowed to use the ceiling hoist. Careworkers are not allowed to help raise brother from the ground if he falls - not even using the sling and hoist.

Cataract surgery attempt: an optician established serious cataracts which have developed since 2011. The optician said we would have to wait 6 months under NHS. Brother wanted to go privately, but this is probably not feasible because we need a special private ambulance so the cost of 5 or 6 hospital visits would be very high.
We booked a local private hospital, Spire Hartswood, for January 2015, actually under the NHS, who were farming some treatment out. Even so it took five phone calls to book a special ambulance because the hospital is in Essex and we are in London - only four-and-a-half miles away. If we'd gone to Queen's it would have been better but I would always have thought the private hospital would be better.
I phoned the hospital and they confirmed, after investigating and calling me back, that they have the right tables and hoists to treat someone of that weight.
We arrived at the hospital one hour early. Filled in a lot of forms largely irrelevant because they presupposed a hospital stay. One hour after the appointment (consultant was running late) we were told his wheelchair will not fit into the room with the ophthalmological equipment. Nor could the hospital put him on a stretcher and take him in that way.
The hospital NHS contact person said she had done everything to ensure we did not lose our place in the queue. In fact we lost it. We will have to go to Queen's Hospital in April instead of January. More things went wrong, but this is not relevant to obesity.

Second example: brother could not pass water in December 2013 and was in hospital urology ward for two weeks, coming out on 31st December. The various follow-ups went wrong - again, not an obesity problem in itself. For example, we were told the consultant would explain why a circumcision is advisable, but then we got a pre-operative appointment, and we said that before we have an operation we need to be told why, as indeed we had been told we would. By the time we saw the consultant, it was several months later and they had forgotten he had ever been in the urology ward and therefore seen by specialists.
The appointment to see the consultant was in Barking Hospital. This turned out to be a kind of walk-in place with no hoists. Brother usually goes to hospital sitting in a black sling with a smooth slippery skin-protecting inner surface, because this way I can hoist him back to bed myself (I couldn't put the sling on him easily). The ambulance had to brake suddenly because a child walked into the road while the lights were changing. Brother was slid forward in wheelchair and cannot pull himself back. His weight is concentrated around the hips. At Barking Hospital I requested an ambulance to go home as I was afraid he would fall onto the floor and there would be no way of getting him up again without hoists. Obviously I will never go to a new hospital without enquiring in future (but that got me nowhere with Spire Hartswood). The ambulance came and refused to wait, so I asked them to pull him up in the wheelchair. The paramedics simply pulled on the sling, as a result of which he was no longer sitting in it properly. The consultant then said we should not bother about the partial circumcision but wait and see how things went. It would have enabled an indwelling catheter to be inserted, but for the time being the Conveen is enough. We had to wait for some hours for a new ambulance. On arriving home, brother slid onto floor so we had to call a new ambulance. We therefore used four special ambulances in one day and also went back to A & E because the paramedics thought brother's heart was not in order, so back home about 24 hours after we left, with no useful result.

I'm not sure how all these stories sound to anyone who has had the time and effort to read them. Of course if you are obese you are the only person who can do anything about it, but it's frustrating when other people think it's easy. I know there's a dispute as to whether obesity is a disability, but I see it as one.

I did ask HAD, a disability charity, yesterday if they regard obesity as a disability, and they gave me details of someone at Healthwatch who will listen to my cataract story, so that is something, but as so often, we carers are complaining and being apologized to after the event but would like things to work better in the first place.
Quite a story! It reads a bit like a cautionary tale.
I'm very impressed by your ability and fortitude in all adversity.
The EU court ruled that in certain circumstances obesity can be considered a disability.

Hospitals have access to bariatric equipment, especially for elective procedures, and to not use them strikes me as negligent.
Scally: yes, I take your point. Difficult to know how things are going to develop, though. I think actually most of what went wrong is just the same kind of disorganization that all patients and carers suffer.
It's remarkably difficult to diet though. My brother actually lost about 50 pounds a few years ago, when he was still able to stand (on two scales), but it didn't have much effect on his health. It's hard to discipline yourself when the aim is 'not getting worse'. And maybe the best way for skinny people to put on weight is to go on a diet!

Frito: Yes, this hospital does do bariatric surgery so they really must have the equipment somewhere. It seems the room with the ophthalmological equipment was the problem. If the wheelchair couldn't get through the door, surely a gurney/stretcher would have. They said they were considering moving the equipment, but then they said this would not be enough - the equipment would have to be switched on again (maybe they meant it took time to get going, and the consultant was running late already). I certainly felt they did not care about my brother as a patient. They said they could not deal with him privately or at a later date either, which I took to mean that they did not want to make the effort.
I know about the EU court ruling. I certainly think the charity for disabilities should include it.
I'd just like to add something about our routine hospital visit yesterday.
I decided my brother would go by stretcher. He has done that once. I was avoiding the wheelchair because he tends to slide out of it and then there is no easy way of lifting him.

The ambulance service phoned up at 11.50 and said the ambulance was coming earlier so we would be at hospital by 1.30 instead of 2.45. They said the hospital will not be able to transfer brother to another stretcher.

Ten minutes later the ambulance turned up. It was a bariatric ambulance of a kind I don't know. It could not take a wheelchair! It did have a broad bariatric stretcher, but no means of transferring brother to it, as he cannot walk or stand. With the help of the carers and the hoist, we got him onto the stretcher.

At the hospital, there were no bariatric stretchers. The ambulance people were persuaded to wait and the appointment brought forward.

The doctor wanted the ambulance's stretcher put into the room with the computer, but it would not go. So we didn't hear any computer details of blood test results, just that everything is fine (this was nephrology) except vitamin D levels.

We were dealt with and taken home fast. The doctor agreed it is a bad idea for brother to go by wheelchair. But what I will do for the cataract appointments I do not know. I had no idea there could be a bariatric ambulance that has no slide board and no means of taking a wheelchair. I found it a stressful day although everything went well in the end.

what a nightmare for you and your brother. How undignified for him. The NHS is useless when treating anyone a bit different. I often struggle accessing suitable medical care for S, due to his autism.

When I had my last hip operation and also when S was last admitted and awaiting a bed on a short stay acute medical ward, I was shocked by the way overweight, elderly patients were treated. Particularly during routine care tasks. The staff were often rude and derogatory.