Living with multiple health problems
Advice for people living with multiple health problems
During the interviews, people were routinely asked whether they had any advice for others living with multiple health problems. Whilst there was some crossover in their responses, the range of people we interviewed meant that a fairly long list of recommendations surfaced based on their different experiences. The main issues boiled down to:
• “getting on with it”,
• being positive,
• looking after yourself whilst accepting limitations,
• using the support available,
• the importance of finding a good GP and
• prioritising your conditions and/or lifestyle.
Further specific advice was given around prescriptions, hospital letters, volunteering and complementary therapies.
John and Anne Y felt that it is important for people to talk about their problems with family and friends. For Anne Y, being able to joke about her epilepsy made it easier for her and members of her family to cope when she had seizures. For John, speaking with family members formed part of a broader strategy of taking on the realities of his conditions, which also included finding support and making plans for the future. ‘Support’ often involved disease charities or patient support groups. For example, Ann had found fantastic support from a local Breathe Easy group. However, Gogs also mentioned social workers and distinguished between free and paid for services via organisations such as Age UK. Ronald, Rosemary and Robert were among those who felt that people should follow medical instructions and just “get on with it,” which seemed to suggest that such an approach would be aided by a positive or optimistic mind set.
John’s advice is don’t keep your problems to yourself, work out what might cause most problems in the future and find support via the Internet.
John’s advice is don’t keep your problems to yourself, work out what might cause most problems in the future and find support via the Internet.
That’s a difficult question, isn’t it? Because everyone is an individual. But basically, don’t keep it to yourself. Talk about it with your family. Make sure people who should know do know, and they know what likelihood is gonna happen or what progress could be made, what you can and cannot do, rather than pretending that you can do things that… And try to work out what the progression is of your multiple problems. What is the… What is gonna give you the most problem? Because that’s what you need to sort out first. And try to find the… And for that, look on the internet, find support groups. Not just in this country. And you may or may not feel that you can talk to other people who have the problem. Because people who’ve had the problem, particularly ones who’ve had it maybe longer than you have, lived with it longer, may well have a solution, or a coping mechanism that will help you. And you don’t need to invent the wheel. Yeah.Ann’s chest consultant recommended that she join a Breathe Easy group. She has found the group to be excellent and had recommended similar groups to friends and family.
Ann’s chest consultant recommended that she join a Breathe Easy group. She has found the group to be excellent and had recommended similar groups to friends and family.
Rosemary advises people with multiple health problems to keep appointments, listen to doctors, take the medication and “get on with it.”
Rosemary advises people with multiple health problems to keep appointments, listen to doctors, take the medication and “get on with it.”
Well, same as any other I suppose, keep all your, make sure you keep all your appointments and listen to what the consultants are saying, take all the medication they prescribed and get on with it, sort of thing [laughs]. I mean I’m of the opinion that there’s always other people worse off, you know, so let the doctors try and sort them out, you know. Val argues that patients need to get as well informed as they can and foster good working relationships with health professionals. Pay attention to diet, exercise and coping mechanisms.
Val argues that patients need to get as well informed as they can and foster good working relationships with health professionals. Pay attention to diet, exercise and coping mechanisms.
I think, from the point of view of the patient who’s got, multiple health conditions, I think you have to accept that it’s your body, and it’s your responsibility. I think you have to make yourself as well informed as you possibly can, and the information is out there. I think you do have to be sympathetic towards the…the medics that you come into contact with, and you do have to try and get a relationship with them, whereby you are both working together for the same ends. so, going in and stamping your foot and shouting the odds isn’t going to get you anywhere, you need the medics to be on your side, and I think you need to work at that.
But, I think you have to put some effort in, and I think you have to look at your own diet, I think you have to look at your own lifestyle, I think you have to look at things like nutrition and exercise. And I think you have to be aware of other techniques of coping with chronic pain and fatigue. So, you know, look at alternative therapies, look at things like distraction techniques, so if you’re busy and you are doing things, it takes your mind off the fact that you’re very tired, or you’re in pain. Really basically you’re not probably going to be cured, you’ve got to accept that, but you’ve got to make the best of your life that you can, and only you can do that. You need help from the medics, in terms of treatments and therapies and medication, but really it’s your responsibility.Barry says that the only way forwards is to accept the reality brought by multiple conditions and “keep trying.” Never give up.
Barry says that the only way forwards is to accept the reality brought by multiple conditions and “keep trying.” Never give up.
Just get on with it really because you get you get the medication from your doctors and I’ve often said, it depends on impression. If you’re a wimp, you’re always going to be a wimp. If you’re just going to accept it and get on then that’s the only way forward really is to keep on trying but also, on the other hand, know your limitations as well. But you you’ve got to try. You mustn’t give up.When Fiona was diagnosed with diabetes as a teenager the doctor advised her: “You control the diabetes. It does not control you.” Effective drugs and open communication with doctors can help find control.
When Fiona was diagnosed with diabetes as a teenager the doctor advised her: “You control the diabetes. It does not control you.” Effective drugs and open communication with doctors can help find control.
I think firstly, I’d say to them, it’s not the end of the world really. I think it can feel like it, and especially if you’re young when you’re diagnosed with diabetes, you just think, you know, the world’s ended, everything has changed, everyone is going to look at you different. And it’s sort of, you feel like it’s going to end but it’s not going to end and people aren’t going to look at you differently and if they do, you just ignore them really because they’re not worth your time.
Okay. Great.
Yeah, and, you know, there might be roadblocks on your way but, I mean I was given a great piece of advice from my paediatrician, when I was diagnosed, and it was you control the diabetes. It does not control you.
That’d be what I’d say to someone with diabetes. I think again, with the epilepsy, it’s, you know, you control it. If you can get onto the right medication and keep open communication with your neurologist, then it can be very well controlled and you can go on and be very successful and you can, you know, eventually get, you know, your driver’s licence back if you have to give it up for a year.Mohammed suggests that you have to learn to recognise your age and any damage from health problems. Then you can adapt your life to the new circumstances.
Mohammed suggests that you have to learn to recognise your age and any damage from health problems. Then you can adapt your life to the new circumstances.
Nigel recommends that people with diabetes look after themselves and then “keep fighting” when other conditions come along.
Nigel recommends that people with diabetes look after themselves and then “keep fighting” when other conditions come along.
Well, anyone that’s just starting out with diabetes, just look after yourself. Really, really, really, really take care because it affects so many parts of your body, you don’t realise and when you’re when you’re thirty, you’re think you’re indestructible, and because I didn’t look after myself at the beginning, I’m sure where a lot of these problems have started from. And I don’t think people realise how it gets you down, one thing after another after another seems to knock your spirit, and I suppose the only thing I can say is keep your chin up and keep fighting.Eric advises people to reduce weight, especially those with diabetes. However, in spite of dietary restrictions he argues that “there has to be some joy in life.”
Eric advises people to reduce weight, especially those with diabetes. However, in spite of dietary restrictions he argues that “there has to be some joy in life.”
Oh, just be careful in what you do, you know, and do all the obvious things. If you can reduce your weight, especially from a diabetes point of view, if you can reduce the weight, then reduce it. I wish I could. I keep trying and trying and it has no effect whatsoever, which is a bit dispiriting, but, you know, that’s the way of, certainly do that…
…and also, you know, with the diabetes, watch what your sugars and things are, you know. I know it’s hard but I have this little phrase that there has to be some joy in life. That’s why I have my little bit of choccy [laughs]. You can’t wipe everything off the slate, no, just, you know, be sensible be sensible, that that’s the word.
Gogs spoke in detail about the need for a good GP given that they can act as your advocate with the rest of the health service. For Amy, her GP was seen as her most useful resource. For Fred, GPs were best used sparingly. This view could have been affected by the fact that it was difficult for him to get appointments with his preferred GP as she was very popular and worked part time. For Pat, the key lies in finding an individual GP who listens and understands you the best. Communication was highlighted. For example, David felt able to talk to his GP about coming off medicines that were causing problems. Lottie said that people shouldn’t be afraid of asking doctors questions.
Gogs says people need a good GP as some consultants are more difficult to communicate with than others.
Gogs says people need a good GP as some consultants are more difficult to communicate with than others.
Right.
…coping strategies, advice around anything that we’ve talked about that you would give to other people?
Well, I…yeah, I think in relationship to the health issues, you know, it’s a minefield that, you’re…you’re not…even I who have got experience is not really getting through that very well, but you do need a really, really good GP who, you know, is your advocate really. The person that will sort things out clinically, medically for you, and if you haven’t got one, then you need to find one and if that means that you need to go to a GP up the road and say, I want to sign on, then that’s what you do, because, without a good GP you really are lost, you can’t get through to, some…you know, it’s unfair that… I have four consultants looking after me, and I have to say that they’re…that, there are two of them that are really, really easy to communicate with, you know, are not defensive in any way, but consultants, like all of us, they’re just human beings and they take into that profession their baggage unfortunately and the people that lose out are the patients, because when you are a patient you’re very vulnerable and you always have to remember that, because when you go in you’re expect…you’re expect…you’re expecting something.
And if it’s not forth coming it just leaves you then to have to try and work out yourself and that’s why a good GP would be very useful for that. If they don’t…if the consultants don’t give you the answers, go to your GP and he will be able to help you.Lottie advises people to get advice from specialist web sites and be open in asking questions and expressing feelings about treatment to doctors.
Lottie advises people to get advice from specialist web sites and be open in asking questions and expressing feelings about treatment to doctors.
Do some research, use the internet, obviously, be wary of which sites you’re on. You know, use Epilepsy Action, the Epilepsy Society websites for information. Don’t be afraid to say to your consultant or to your GP how you’re feeling. Don’t be afraid just to ask questions and if you’re not happy with what is being done, don’t be afraid to tell them that.
And keep pushing and keep asking until you get the answers that you’re happy with.
At the end of the day, it’s your body and your life. You are in control, control is not quite the right word because you’re not, but you do, you have a say, you are entitled to have a say in in what treatments and to be happy about those treatments.Chris found benefit from voluntary schemes at his local hospital which involved more health checks. He found this increased his confidence in the management of his conditions.
Chris found benefit from voluntary schemes at his local hospital which involved more health checks. He found this increased his confidence in the management of his conditions.
Well, I think one of the things that, certainly with our local hospital that that not only with what you’re doing, but there’s two or three schemes that are volunteer, you know, which you can volunteer for and if you’ve got the time yet they’re worth, I think they’re well worth doing, because you meet cardiologists and things which doing what I’d said earlier on, like a health check, which certainly I had for the first fourteen months. And it did mean me having to go to the local hospital, you know, two or three extra times but they reviewed how your blood pressure was and also that sort of gave you a bit more self-confidence, you were going in the right direction. You might last a few more years yet sort of thing and to make the most of you know, the, you’ve had a serious condition and you luckily, have survived it and that you’ve got to make the best of what’s left sort of thing.Steve only found out that he was eligible for free prescriptions by accident. He has found a phone app helpful that monitors his blood pressure and reminds him when to take medicines.
Steve only found out that he was eligible for free prescriptions by accident. He has found a phone app helpful that monitors his blood pressure and reminds him when to take medicines.
I was just wondering if there was another patient who was kind of facing similar issues that you’d faced, what would be your advice for them?
With the medication get an app on your phone, I think that is a godsend, and a dosette box to organise the medication, because, you know, I couldn’t carry around all my medication in a bag every day that I need to take. Smartwatches are fantastic, if you can get that link up to medication, because it v…it kind of vibrates on your arm more discreetly than having a phone ding to say you need to take your medication. Again, the app that I’ve got, the particular one keeps a note of my blood pressure, weight, etc. so I can keep a little bit of a, an eye on things like that. So I just take a, a note of whenever anybody does any test or anything, you know, I can keep a thing of that, so I can discuss it with the GP, you know, if somebody says, oh, that’s really high, I think, well actually last time it was, it wasn’t. Try and see the same GP if you can, rather than go to different ones around the practice. I find…I found that really helped, that really, really helped. Get to know the receptionists at the doctor’s surgery. That’s really good as well, they, the receptionists know me when I walk in now, so that’s really helpful.
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