Experience of weight management support within specialist health care

Managing one or more long-term conditions will usually mean contact with specialist services within the NHS. We asked people about their experiences of this in relation to their weight.

Diabetes Care

Diabetes UK advises that when a person is diagnosed with diabetes, they should see a registered dietitian to discuss what they usually eat, how this relates to their diabetes, and what other information and support would help them to eat healthily with diabetes.

The people we spoke to who were seeing a specialist diabetes team had many positive things to say. Janet has been going to the diabetic centre for her care for 20 years where she sees the same people and is known by name. She has felt listened to and was particularly well supported by her diabetes nurse before and after the gastric band surgery.

Sue Y was relatively newly diagnosed, but she too, was impressed with the level of support she received from the specialist diabetes team to manage her diabetes with diet; she said ‘everybody has been brilliant’.

Janet describes the support she received from staff at the diabetes centre when she had her gastric band operation.

Age at interview 62

Gender Female

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And then when I went to have this process of the gastric band my diabetic nurse were such a support to me and she and the dietician at the diabetes centre helped me through that process of finding the right thing. So, through that process they asked me would I go and see a psychologist to talk to me about a complete lifestyle change. So, I had that advantage that I did go and see him for about six times and he were brilliant. So, I knew before I went to have the gastric band that everything was going to change.

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Sue Y was diagnosed with diabetes a year ago. She is full of praise for the information and support she has received, including the Care Call service, which is enabling her to manage her diabetes through diet.

Age at interview 69

Gender Female

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So, I started putting weight on again until I’ve got to the stage now where I’ve become diabetic and this was diagnosed just over a year ago.

But I’m on the borderline and I can stabilise it with diet. So, I’ve had two blood tests and I’ve just recently had a third, but I haven’t had the results yet. Both of the first two were just on the borderline and so I only keep to a diet. I’ve been to lots and lots of diabetic sessions that have been organised by diabetic nurses at the different surgeries that I’ve been to because with having moved, I’ve had to change doctors, and everybody’s been brilliant. There’s a diabetic care, care call that rings me up to keep me on track with the, with the X-PERT diabetes course that I took and it’s been fabulous.

Okay.

So I’ve had all the tests, diabetic retinopathy and all kinds of tests and everything’s been absolutely great. So, fingers crossed, you know, I can really get on top of it.

Because when I was first diagnosed, you know, you think, Oh, what do I do, you know, who’s going to help me and believe you me there, I have had so much help, it’s just untrue. Absolutely excellent.

From?

Well
The diabetes nurse?

Well the whole diabetes thing in [City] has been fantastic. I get, as I say, I get, I’ve had the courses and the follow up is the diabetes Care Call and they’ve been absolutely fabulous.

So they called you once
I’ve had three phone calls and the lady who’s, who I speak to, [Name], she keeps me on course with talking about my diet, different things that I could be doing and all kinds of things, suggestions. Just a myriad things. So, I’m very, very lucky I count myself as being exceptionally lucky because I’ve got this and of course I see the diabetic nurse in the medical centre twice a year.

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A common theme among those with positive experiences of specialist diabetes care was their relationship with the diabetes nurse. Stuart was critical of general advice from health professionals to lose a few kilos, but said he had an excellent diabetes nurse who ‘has covered all bases’ in terms of weight. Hilary said she swore by her diabetes nurse, who was very supportive and had referred her to a course on diabetes and weight management at her local hospital. Myra said, ‘They understand that it’s not always easy when you’ve always had a weight problem, but they’re encouraging’. Sue Y and William both commented on how knowledgeable and experienced their nurses were. Sue Y said, ‘They’re fabulous, they have so much knowledge and obviously I think the more experienced they are the better because they’ve gone through the gamut of everybody’s worries and questions and so on. So that they know an awful lot’.

Hilary describes her diabetes nurse as very much a people person. She values the encouragement she has been given to lose weight.

Age at interview 62

Gender Female

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And the advice came after you were diagnosed?

Yes, yes.

Okay and how do you feel about what was offered at that point?

It was fine from that point. I think because [nurse] specialised in diabetes and she’s very much a people person. I think that’s another thing as well, I think you need to know how to approach people to get across to them that you’re not having a go and saying, you know, You’re just fat. You need to do something about it That’s not going to work. You need to be able to talk people through it properly and say, Look, your weight is an issue. You know, at your height, you know, and your, your build, we should be looking at you being x-amount and a realistic sort of thing and saying, Well look we need to star which [nurse] did. But up to that point, no.

Okay.

But after that, it was fine, there was support there and there was encouragement and there was, [nurse] would be like, Yes. That’s great. We’ve lost another four pounds And, and sometimes I’d say, Oh, it’s only four pounds You’ve lost. You’ve not put on. So, let’s be positive, you know. Let’s try more for the next month or the next quarter, or the next six months, but you’re not putting it on. it’s still going down So, I think that’s it.

it’s a lot of encouragement.

Yes, yeah and I think you’ve got to have some of that to, because you need, you need the, the stick and you need the praise. But you need the stick in a way that you’re going to respond, and not just say, Well I don’t care what you say because I like food

So, you have a good rapport with her?

Yes.

That helps.

and the other nurses there and the receptionist and as I say, Dr [name of Dr.] as well.

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Not everyone felt so positive about their experiences of diabetes care. When she was first diagnosed with diabetes, Julie says she was told it was inevitable she would go onto insulin. Eleven years later, she is still controlling her diabetes through diet and thinks that the NHS doesn’t necessarily give the right advice about diet.

Seeing a dietician

Dietitians are qualified health professionals who assess, diagnose and treat dietary and nutritional problems. They provide practical guidance to help people make appropriate lifestyle and food choices. A GP may refer a patient to the dietician for a range of conditions, including diabetes, high blood pressure, cardiovascular disease or those who need to lose weight safely.

The people we spoke with had mixed experiences of seeing a dietician. Some, like Maxine Mary, Janet and Lina found their advice really useful. Maxine Mary’s dietician told her that ‘We’ve evolved to need different quantities of food and what is the right amount of food for some people is too much for you,’ and she found this advice made total sense to her. Janet found their advice on what to eat after her gastric band very helpful, ‘she give me recipes, she give me ideas’. Lina’s dietician helped her adapt her diet to manage her blood sugar. But Ellie waited four months for an appointment with the dietician, who she then felt didn’t give her suitable advice. Alan had found his visits to the dietician less successful. He felt that the differences in age, gender and size made it difficult for dieticians to relate to him and his weight problems. He would have preferred more practical, evidence-based guidance.

Alan finds it difficult to believe that any young, slim dietician could understand what an older overweight man has had to deal with. He doesn’t take their advice seriously.

Age at interview 48

Gender Male

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Historically, Ive had advice from dieticians, but unfortunately, theirs is theoretical advice, and it doesn’t apply to the real world, and theyre usually very young, and young ladies who have never had to look at their weight, so they don’t really have any real world experience of say a middle aged person who would know about dealing with their weight. So, they give you theory advice, and you look at it and say, "That’s fine, but what about in practice?" so I tend to discount it, to be honest. I know that the problems are you eat less, and you exercise more; that’s the simplest way of doing it.

They have given me dieticians to talk to in the past, and as I said before they tend to be twenty-two, seven stone, size zero [laughs].

So, it’s not…

Well they have no credibility, that’s the problem. They have no credibility because you cant… you cant relate… they cant relate to what you’ve been through. You know, if they were mid-thirties, and theyre always women, so if theyre mid-thirties and had children, they would understand an awful lot more about weight change, wouldn’t they?

Yeah

But they arent; theyre still young, you know, recent graduates.

Well you have seen a dietician, that has… you have been referred by the diabetes nurse or by…?

Yes, yeah, but it hasn’t happened for a long time now because, as I say, it was… it wasn’t successful.

OK

Because I couldn’t take them seriously, and they couldn’t give me evidence as to what, you know, if I did that then would be the effect, so

Hm mm, OK. So, what you would like is sort of advice or to lose weight, if you don’t lose weight this might happen?

Yeah, well not might happen, will happen. I’m actually looking for cause and effect, not well, I think it maybe, you know. I can do maybe, but if a healthcare professional is telling me I need to lose weight, I want to know why – you know, give me the reasons why, and back them up. If you cant back them up, why should I believe it; why should I take it seriously?

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Variable advice on weight loss within specialist care

There were a range of other experiences of specialist NHS care from oncology to rheumatology and cardiology. The extent to which weight was a topic of discussion varied. For example, Liz was found to have osteoarthritis while in hospital with sepsis. She said there had been no discussion of her weight, because the doctors were more concerned with keeping her alive.

When Liz was in hospital with sepsis, there was no discussion of her weight, because it was not a priority.

Age at interview 54

Gender Female

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I’m sort of interested to find out when you were diagnosed with osteoarthritis, did they talk to you about your weight and how to lose weight?

No. No, to be fair to them I think they were probably just more focused on keeping my alive because I was quite poorly. I was forty-eight hours from a coma and multiple organ failure, so I think they were probably more concerned about keeping me alive. And the antibiotics they were giving me were just so toxic – they have to test your blood every day to make sure that the antibiotics theyre giving you arent killing you [laughs]. How could this be, you’re giving me something to make me better. Yeh, but it could make you really ill. Oh, OK, carry on then. The diagnosis on my ankles and my feet was just literally an aside from that. It was… but it did make me think, Well at least I know now why the tops of my feet are always painful, and that’s why because of the wear and tear. So, it was very much an aside that no… but nobody ever sort of took it up. I think, as I say, they were more concerned about keeping me alive.

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When John X was diagnosed with sleep apnoea, he said he wasn’t given any information about changing his diet, but when he was later diagnosed with prostate cancer, his weight was one of the first things that came up.

John X did not receive information on how to lose weight when he was diagnosed with sleep apnoea, but it was one of the first things the consultant mentioned when he was diagnosed with prostate cancer.

Age at interview 67

Gender Male

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Well I guess I should start with the episode of sleep apnoea that I had I think it must be about five years ago, 5 or 6 years ago. I can’t be absolutely sure of the date.

Ok, ok. So I was, I had one of these sleep-overs in a hospital here in [City] in which my breathing was recorded and it was clear that there was a mild to moderate case of sleep apnoea and there was an issue, of course, of losing weight. But the main suggestion that I got, professional suggestion, was to buy an apparatus for my mouth which I eventually bought. Which is a thing that basically holds your jaw, lower jaw forward. And I started using that and that made a huge difference. I used that for several years.

I wasn’t given any information about or any suggestions about a change of diet but I realised that weight was an issue but I have to confess I didn’t do a lot about it. I mean once I had this, this apparatus in my mouth at night it made a huge difference in it. So I just continued with that. But I suppose what really made a difference in terms of my weight or my attitude towards weight was two years ago when I was diagnosed with prostate cancer. And again the doctor said to me, they took one look at me and they said, Well you are going to have to lose some weight

Ok. When the oncologist said to you, I think you need to lose some weight What was your reaction? What were your first thoughts? Were you surprised?

Slightly surprised, slightly surprised but I could see that I was, that my girth was increasing. I could see that. So it didn’t come to me as a huge surprise, no. But I was surprised more by the context. And what does this has to do with prostate cancer, I thought. What does this have to do with prostate cancer and my chances of, of keeping fit and well? But that was one of the first things that, the first rather arrogant oncologist told me was, It would be good for you to lose some weight

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Sue Y said her heart consultant told her she was ‘rather stout’ ‘but that was it’. John Y sees the consultant cardiologist every year and explained: ‘I make a rash assumption that as a consultant cardiologist, if he was bothered about my weight, he would say something about it And similarly any of the other consultants I see, they are not saying, ‘Oh you’d better get some weight off.’ They don’t seem to be bothered about it.’

Heidi hasn’t felt able to talk to anyone about her weight since having a heart attack. She is worried about how she might afford to pay for a healthier diet.

Age at interview 50

Gender Female

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If you have talked to health professionals about the weight, especially after you had the heart attack and things like that, have you explained these things to them?

No, I can’t.

Why not? Do you think?

it’s just not come around I don’t think. it’s, I don’t think it’s, it’s, I want to, you know, what I mean but I haven’t really had the chance to see any yet, the doctors after my heart attack. I’m seeing them next month. So really I did see a nurse about that, a nurse, a rehab nurse, but that was only to see how I was doing as, as, straight after I came home, so not about healthy eating. She just said, You’ve got to healthy eat, live healthily and, you know, eat your five a day and eat plenty of protein for your everything else you know, and no reason, no how am I going to do this budget and how am I going to do this, you know, the actual paying for it.

I think they should work with each other with the person more closely looking at it holistically, like I said before. If you, if you look at the whole person and the situation around them you can get a fair idea of whether they possibly may be able to afford to healthy eat or not, so the best way is to find out if they can. If they’re not, they’re not going to choose the healthy option. they’re going to choose the, to be honest it’s cheaper to eat out at a McDonalds than it is to eat healthily.

So, they don’t give us an option really. For people who can’t manage it, they’re going to opt for a take away aren’t they?

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For those people who had received advice, this was sometimes too general. David said he had received advice and encouragement from his pacemaker reviews, ‘but it’s all at a quite general level and the most useful advice I’ve had has been off the websites’. Stuart said he’d been told he would feel better if he lost a few kilos, and had been given some leaflets ‘which really are a waste of paper they’ve got just basic recommendations’. Lesley said she would like more targeted information about the interaction between her medications with her weight.

Lack of detailed information about how her heart medication might affect her weight has frustrated Lesley, who would like more control over her doses.

Age at interview 60

Gender Female

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So it seems to me that what you would like is to have a kind of review of both of your condition, the medications and the healthy eating or healthy lifestyle.

Yeah, the more, I think holistic, I think holistic
Holistic, yeah.

.approach. it’s not, that’s there, that’s there. it’s bring them both together and saying well, You’re doing that, you’re doing this It, it’s fine for anybody to say, Oh, you’ve got to lose weight and you think yeah I know but, you’re giving me this, if I reduce that will that help or if, what is the thing that’s making counteracting with each other? Is there something you know, I’d love to have more knowledge if there a certain food type that disagrees with beta blockers, so if you’re on beta blockers don’t, try to avoid. Not, not just standard carbs and fat, because we all know that, but is there something that perhaps is linked. Is there some enzyme or something that is, is created? I know it looks like you’re trying to find an excuse but it’s, I really feel there’s, there’s something there because the biggest change for my life has been all this medication that I’m now suddenly on and nothing else.

You need intervention to find what is interfering with what?

Yes, it would be lovely to have the research or to find out especially when so many people take this medication now. You know, I know, I know people have said, They’ve lost a bit of weight here, they’ve lost a bit of weight but in general most people that I’ve spoken to on the groups of social media have said, you know, it’s a huge effort, you know, and a lot of people are a lot more ill than what I am and they still said, it’s so difficult you know.

Have you asked this type of question to health professionals?

To the cardiac nurse the last conversation I had, and she said, Go to the Slimming Club And it is difficult because they have, they only have so much information that they can give you, but that was her, that was her advice.

Okay, but you would like more kind of targeted information?

I think targeted information, and also, again being able to sort of control things from the medication front myself a bit more. Having a bit more input with that and I know that, that cardiologist could listen to me and think, Well, what does she know. And I could be doing, and I could, you know, do it for a week and think, Actually, I feel really unwell by doing this. They were right all the way along. I’m quite happy to take that chance for a few days. it’s, it’s being able to, I feel certainly for cardiac patients there’s, the, the big three medications you’re given are the statins, ACE Inhibiters, beta blockers and it’s like a, That’s what we give you. That’s what we give you.. and there’s no because the evidence has shown they are good, they bring good results which is fine, but I feel that I’m not, I can’t, I haven’t got the chance to say, Can I change it a little bit Can I, can I lower it? Can I do it And them saying, No you can’t sort of thing.

That’s where I feel a bit frustrated and I could be totally wrong, and I know that. I could try it for a week, as I said, and have palpitations or have whatever and then I think, Actually they’re right. it’s not that then. I’ve got to try and find another solution or, or live with it.

But just being able to try, not just eating well, which is what I’m doing, but let’s, let’s try tweaking this one, see if that helps as well.

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People whose specialist healthcare professional had discussed their weight with them directly, and not just given them what Alan referred to as the ‘standard mantra’, tended to appreciate this. Joan and David had both been motivated to lose weight after frank discussions, while Paul Y said that he would find some ‘hard targets’ from the diabetes nurse helpful. Moreover, he would like it if a specialist would go through his more than ten year history of living with type 2 diabetes and say ‘Let’s have a look at that long term record of when you were doing well and when you were doing less well’, so pointing out the effects of weight gain, weight loss and exercise on the management of his condition.

Joan was encouraged to lose weight by her rheumatologist who made it clear that if she carried on gaining weight she might become unable to walk.

Age at interview 57

Gender Female

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Were the doctors or nurses suggesting that you ought to lose the weight, the extra weight?

Yes.

Yep.

Yep, especially the rheumatologist ,hellip;.Yeah. .you know, she kept saying, That’s you put on another two kilos, Joan and I was like that, I know And she had written to the GP to ask if they would discuss the weight management with me.

Okay.

The GP didn’t. I brought it up and said, I would like if you could refer me to the weight management at the Health Board and the GP was like that, Good idea. Okay I’ll put the referral off for you

Okay. The rheumatology was the one that has been encouraging you and said, that, losing weight has a very positive effect on your,..

Yes, what she said is, If you continue to put on weight, I don’t know how long you’ll be on your feet so that was a really good motivation, you know, because I was really struggling with walking.

Okay and she was blunt?

She was, and do you know, I would rather as much as a lot of the truth hurts, I’m more perceptive to people who are completely up front with me rather than, Oh well you know. Whereas she was like, you know, You really need to lose weight. You’re not doing yourself any favours. it’s up to you. I’ve told you what my opinion is

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A frank discussion with the diabetic nurse shocked David into losing weight.

Age at interview 71

Gender Male

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So the diabetes nurse gave you a shock in 2012, when she said
Yes.

If you
That was what that was what kicked it into, that was a diabetes nurse who basically said, Look, you’re not managing it probably and, if you don’t, this is what’s going to happen to you. Your life expectancy is [aah] [Laughs.] So and you’ve got to lose weight and you’ve got to do this And that that’s what started it off and that was followed up I think after six months but that nurse left. That the shock was what was started me monitoring it myself and I’ve kept that up since. That’s demonstrated to me personally that I can correlate between how I feel and how much I weigh and how much, and my blood sugar, if I if I put on weight, my blood sugars go up and, if I take off weight, they come down. And it that, it correlates more to that than to anything else.

Do you think the nurse who actually gave you a fright, how did she put it? Was she kind of forceful?

Yes, she…

How did she do it? Can you explain to me a little bit more?

She was quite straightforward and she told me that I, you know, that I wasn’t helping myself. You know, we can give you all these drugs but you’ve got to help yourself and you’re not controlling it and the reason you, and you’ve got to control it because you’re going to have to diet more. You’re going to have to do this, she emphasised the weight and she told me that if I didn’t control the weight and the blood sugars and the blood pressure, my life expectancy was and she went into the computer and she put my weight in and she did this and she said, Oh well, you know, you’ve got this many years And I went Oh that doesn’t sound very many.

Okay, so.

Shock treatment.

Shock therapy.

And she gave me another copy of what I’d already had, the diet and she said, and the other thing she said was, At that stage she said, If, you’re going to have to go onto insulin You know, I wasn’t on insulin then. I’m still not. And so she, she painted quite a bleak picture and she had a follow-up more frequently than my normal follow-up had been.

When I went back to her, I had lost weight and my blood sugar had gone down and she very much pointed that to me.

Okay.

And she, that was the kick-start. That was the kick-start.

So she really frightened you.

She frightened me, yeah. I was getting, I was I was bumbling along whereas, subsequently, she’s left now, she did me a lot of good. Thank you very much. I don’t know where she’s gone. Now I go in for an annual check-up and they’re, Oh yes, Mr [Name], you’re doing very well and this is very good and that’s very good And it’s much more pat.., that’s not what, I need a, you know, they don’t say, You need to lose another five pounds Which is what, you know, I know that. But they don’t tell me that.

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Managing weight in the context of co-morbidities is a complex issue that requires considerable support from specialist teams. For example, Colin had a heart attack and was diagnosed with heart failure. He got some dietary advice from the cardiac team but was not seen by a dietician. At the same time, he explained that his cardiologist’s main concern was to find the right medication to reduce water retention that didn’t clash with his epilepsy medication. Colin’s unmet need was to find exercise options that took into account his osteoarthritis, lung and heart conditions. He has had mixed experiences with consultants but said that, in general, specialist nurses are better. Lina’s asthma attacks are severe and life-threatening and each attack is followed by a high dose of steroid therapy. Lina thinks that steroids have contributed to her weight gain. Her consultant would like her to have a treatment called Bronchial thermoplasty, which she hopes will lessen her severe asthma attacks and the need for high dose steroids.

The advice Colin wanted from his cardiac team was to find an exercise programme for weight loss that took into account his osteoporosis as well as his heart problems and epilepsy.

Age at interview 72

Gender Male

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The only dietary advice I’ve been given was basically in connection with the heart condition and I was told in 2015 that I had, had a heart attack and that I was also suffering from heart failure and as a consequence of that they didn’t actually send a dietitian to speak to me but the cardiologist and the heart failure specialist nurse advised me on dietary matters and how much fluid to take and all this, that and the other. But because of the drugs I was taking at the time for the epilepsy he couldn’t find a diuretic to reduce the fluid retention. They have done now.

How did you find that advice? Was it sufficient?

No.

What else do you think?

No, I could, I could do, I think with finding some form of regular exercise that’s not going to exacerbate the problems that I’ve already got and the main one there when it comes to exercise of course is the osteoarthritis. The secondary one would be the shortness of breath through the lung condition and the heart condition. But apart from that if I could find some sort of exercise where I could gradually lose weight, I’d be a lot more happy.

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Lina’s respiratory consultant has suggested a treatment called Bronchial thermoplasty, which she hopes will reduce the need for large doses of steroids she requires following a severe asthma attack.

Age at interview 49

Gender Female

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Do you have those, do you still have those hunger pangs or

No luckily, I fought damn hard with the consultants to bring my steroids down.

We’re trying to get it down to five milligrams. We’re at seven, so I,I feel that I’m heading in the right direction, so long as I, you see the problem is they get frightened because they’re like, Oh, you know, we don’t want you to have another bad asthma attack You know, this one could be the fatal one because that’s what you, that’s what you think, that’s what you know. You don’t know that, that particular asthma attack could be the one that puts you in hospital so you’re wary of taking your medicines down but I found, I found that since I’ve gone down in my medication, my appetite is starting to kind of normalise itself now.

I have normal hunger pangs [laughs]. I still, I’m managing with protein shakes for breakfast, but I know that I’ve got to eat breakfast, lunch and dinner, that’s it and I maybe I’m allowed a snack and that’s it.

As an example, with my asthma, what the doctors were saying as well, we don’t know, there’s not much more we can do, you’re going to have to stay on steroids for life and blah, blah, blah. And it was always sort of doom and gloom and then I found out from, I dropped into a respiratory consultant who I know, who sees me at the hospital and I said, there is a treatment for asthmatics or severe asthmatics, people with COPD or people who have got severe asthma like myself and it’s called thermoplasty and it’s basically they heat up your, your air sacs in your lungs and the tubes in your lungs because every time you have an episode or you become ill, your lungs become scarred and the tubes become smaller and smaller, so if every time you get sick, you literally you’re losing air in a way more rapidly than you would if they didn’t give you steroids, because what steroids does is it tries to control the inflammation, so instead of when I’m really sick I’m like that, it can give me the extra air I need.

So that’s the reason why they want to keep me on the steroids.

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