Managing a long-term health condition as an adult
in Organising care around patients

The chapter is prefaced by a brief summary of the policy background. People with long-term conditions account for a very high proportion of all health service usage. Yet those services often struggle to provide what is needed. Accurate diagnosis, medicines and treatments matter, but so does an approach that is sensitive to your preferences and your experience of living with your condition; continuity of care and the joining up of different services; being empowered and supported to live a fulfilling life. There are five stories in this chapter. Katie has had type 1 diabetes for around twenty-five years with gradually increasing painful and distressing complications. Tim is in his 30s and has epilepsy which developed during his teenage years. He talks of the stigma attached to the condition. Joanna has various health problems, including Ehlers-Danlos syndrome, which is a rare condition, and which her son also suffers from. Jasmin has lupus which took a long time to be correctly diagnosed. Venetia lives with chronic fatigue syndrome which has significantly affected her quality of life as a young adult. We invite readers to assess how these narratives compare with the four characteristics of patient-centred care that we outlined in Chapter 1. As with the other chapters, we pose questions arising from these stories, to simulate thinking and reflection. We have divided these into questions of immediate or operational concern, and those which are more strategic or policy-related.

Introduction

Advances in public health and medicine have done much to reduce premature death in recent decades. But we have not abolished chronic illness – whether inherited or brought on through the stresses and excesses of modern living and exacerbated by inequalities. The result is that long-term conditions have become one of the defining challenges for modern healthcare systems. In England, although it is hard to obtain exact figures, more than 15 million people are estimated to have at least one long-term condition (King's Fund, 2013) and it is becoming more common for people to have two or more conditions.

Though chronic illness increases with age, it affects all age groups and is more common – from an earlier age – among those in the most deprived areas. Patients report how disruptive and hard it is (“the treatment burden”) to adhere to treatments which affect them physically, socially and emotionally, and thus how they come up with acceptable workarounds (“rational non-adherence”) which can adversely affect outcomes (Demain et al., 2015).

People with long-term conditions account for a very high proportion of all health service usage. Yet those services often struggle to provide what is needed. The NHS is typically organised to deliver single episodes of care along single disease pathways. Or, as the NHS Five Year Forward View (NHS, 2014) put it: sometimes the health service has been prone to operating a “factory” model of care and repair. Chronic illness and multi-morbidity require different approaches. Medicines and treatments matter, but so do other factors: a collaborative approach from the professionals that is sensitive to your preferences and your experience of living with your conditions; continuity of care and the joining up of different services; being empowered and supported to manage your own condition. And above all: being seen as a whole person.

The stories

These approaches and attitudes are mirrored in our Chapter 1 (Section 2, p. 4), where we offer a description of patient-centred care, in general, as:

  • Understanding and valuing what matters to patients
  • Seeing the whole person
  • Respecting people's rights and autonomy
  • Being customer focussed

There are five stories in this chapter. Katie has had Type 1 diabetes for around twenty-five years. Tim is in his 30s and has epilepsy. Joanna has various long-term conditions, including a rare condition. Jasmin has lupus and Venetia lives with chronic fatigue syndrome.

Story 7: Katie

Katie has had Type 1 diabetes for about twenty-five years and lives with a variety of difficult, painful and personal complications of the disease. Katie describes her ups and downs in battling to get the care she needs. The importance of continuity of care from her GP surgery is illustrated. She also talks of the impact on her mental health of living with her debilitating and gradually deteriorating condition for such a long time.

Katie: My name's Katie. I'm 50 and I've been diabetic for twenty-six years. I was admitted to hospital with very high blood sugars, just coming back early off my honeymoon. I went into a diabetic coma, basically.

And that was the first you knew?

K: Yeah.

And thinking forward to the care that you get now from the NHS, can you tell me what is the best thing about the care?

K: I'm actually seen more than I was when I was first diagnosed. Albeit that sometimes I have to push to get seen. But yes, I am seen more regularly. And the treatment out there is better. It's progressed in the twenty-five years.

I'm seen twice a year at the surgery. And a full twelve-month check, that being my feet, checking if I've had my eyes checked, and then every six months my HbA1c, whereas on the twelve-month I have a full blood check. So yeah, I am seen regularly there. This is through my GP, and then I'm also seen through the hospital, through the diabetic nurse. She sees me every four months.

And if I've had any problems, be it my eyes, my feet, I get seen quick. And when I say quick, with my feet it's within a week with the chiropodist. I am down on a six-week check, but if I've got any problems, I'm seen within the week because I've got a red flag on my records. And with my eyes as well, I just ring my optician and he's very good. I see him within the week, usually. And if there's a problem, I'm directed to the hospital if need be.

It reassures me a lot because there's a family history of amputation. And with my eyes, I've lost my licence on two occasions because I've had problems, and I know losing your licence isn't the best thing, but I know there's been a problem. And on one occasion they found out I'd had a minor stroke, so that was reassuring really, that I'd seen somebody.

When you phone the surgery, is it easy to get an appointment?

K: Usually, yes. Because again, I've got a red flag; it's like when I had the flu, I was triaged and that reassured me … I was told that, yes, I'd got the flu, but it did progress into chest infections and different things, but because of that I was seen by a doctor, yes.

Tell me about how the nurse at the GP surgery is helpful, or not.

K: She's very good. She's actually worked with both the consultants I've seen … She's been one of the nurses at the hospital. And then she's come out and gone into GP practice. So she knows the two consultants very well. And she also knows my community diabetic nurse. So she can liaise with them … if I have a problem … And she's thorough as well. I've got every faith in her, which is a good thing, because I haven't in one of the other nurses, the hospital diabetic nurse … When I try to get hold of her she doesn't always return my messages, and I've been having a lot of problems with my blood sugars. They've changed my insulin, so obviously, my blood sugars have been up, down, and trying to get hold of her is important. Even though she's given me her email address, she's still not getting back to me quickly, because I would say within two to three days she should be getting back to me, not within a week, or even more.

At the surgery, I can usually see one of three GPs that know me. So I get the continuity. I don't have to go round and explain everything, and they know exactly what's wrong with me. All right, yes, it's got it in front of them on the screen, but they know I've been in and I've cried or … so they know exactly how I am. I just feel comfortable going and knowing that they're all really caring GPs as well. Other GPs in the surgery, yeah, they're okay, but they've known me for a long time. I mean, one of them, I've known for a long, long time and I could say she's a friend as well, and she knows the family, so it's … yeah, that's good.

Could you explain briefly how it physically affects you, your diabetes?

K: I have neuropathy in my hands. It's where the nerves die – well, I think it's what they say. So I have that in my fingers. I have it in my feet, in my toes it is really bad. And you get excruciating pain from it. I'm on medication for it but it's come to the point where it isn't working. I've had that probably about fifteen years. I've got numbness in my feet as well, and in my hands, but in my feet you have to be very careful. You've always got to have something on your feet, slippers … You can get something in your foot and not know about it and then you get infections, so it's … yeah. So that's the neuropathy.

I've got problems with my eyes. And … that was just retinopathy. I've had my eyes lasered twice, once in each eye. What else? I've got gastroparesis … which is to do with how, when you eat, how your food goes through your tummy into the bowel, and it's where, again, the nerve endings are dying off, which causes a lot of pain, also causing problems with me going to the toilet, having my bowels open probably every five to six days. So that's another condition. I've also got problems with my bladder. Again, they've said that's to do with the nerves. So basically, a lot of it is to do with your nerves dying off.

With the bladder, I've got no control. I mean, at night I'm soaking, and that's one of the things that is really getting me down. It's one of the worst parts of it …

Is there any source of support or help for that?

K: I'm under a consultant. I'm due to start some treatment. It could work. It's a twelve-week nerve treatment again, where they put in a needle into the tibial nerve to try and stimulate the bladder. If it's going to work, it's going to work by week five. If it's not, I don't know what's going to happen, but I have got support, so … But I just wish something would wave a magic wand … Because that's the one that gets me down. I mean, well, my husband as well. Changing the bed two or three times a night … and when you're 50 you don't want that.

No, indeed. Have you been hospitalised with any of the complications as a result of your diabetes?

K: I have, yes. If I've had a chest infection I've been hospitalised. They gave me fluids and I needed antibiotics. But also, if I've had problems with my tummy with the gastroparesis, I've been hospitalised. If I've had a UTI [urinary tract infection], I've been hospitalised. Just for something simple like a UTI, you think, why are you hospitalised? But they've had to put me on antibiotics …

So how many times do you think you've been in hospital in the last twenty-six years? Or have you stopped counting, really?

K: I've stopped counting because I've had problems with my legs. I've had compartment syndromes in both my legs, which is a very rare condition. It's usually if you've had a car accident or a sports injury, but I had a spontaneous compartment syndrome in both legs and I was in hospital for nine weeks. It's when your muscle is covered in a fascia, which is like webbing on a leg of lamb … it's a very thin, but very tough sheath. What happens is you bleed within that sheath, but you've got four compartments and there's nowhere for it to go. So your leg just expands and expands, and you can lose your leg, and I was very close to losing my right leg. And I was lucky that the nurse at our local cottage hospital had worked in A&E and she said we need to get you to A&E now. So we went straight to A&E and they said they think I've got compartment syndrome, but they'll leave me for an hour. But within half an hour I was on the ceiling. The pain was excruciating and I was in surgery within the hour. They just cut the leg open, basically to … get rid of the blood. She basically saved my leg. Because if I hadn't have gone straight to hospital … So I was in hospital nine weeks for one leg and seven weeks for another, but a lot of it was because of healing.

They say the longer you are diabetic, the more you suffer from these complications. Because I've not been well with other things my blood sugars have been out of control a bit. And you do get problems because of having raised blood sugars.

I inject four times a day. And I use a blood sugar monitor, but I also use a continual blood sugar monitoring system, which isn't on the NHS. Well, it's just been brought out into the NHS. I think it was November of last year. But I've been using it probably nine months now. Initially, I was given the monitor by my diabetic nurse at the GP surgery. And she said that if I wanted to carry on using it, I'd have to pay for it, which it's about £55 every two weeks. So what I do is I use the continual monitor for two weeks and then go onto my normal glucose monitor where I have to prick my fingers. Which isn't the best because I've got very tough skin on my fingers. I can't get the blood out very good. But I can't get the continual monitor on the NHS.

And you're choosing to have two weeks on, two weeks off because you can't afford it all the time. Is that what you're saying?

K: Yeah.

What difference does the continuous glucose monitoring device make?

K: There's no finger-pricking at all, you just put the device in once and it lasts fourteen days. And it's a little sensor – smaller than a mobile phone – and you just swipe it over … so you've got one bit in your arm and the other bit that you carry around with you. And then when you want to do your blood sugars, you just flick it on your arm and swipe it and your blood sugar's done there and then.

It also tells you if I hadn't done my blood sugars half an hour ago, it'll tell you what my blood sugars were half an hour ago. So I've got a day's worth all the time. So I can see what my blood sugars were even while I'm sleeping, which is better than having to wake yourself up because the doctor says, oh, you've got to do it during the night …

It's made a difference that I can tell my diabetic nurse exactly what my blood sugars were. I can send her the data and she can then say, right, Katie, alter by two units or whatever, so …

Thanks for all this. We've talked about things that have been quite helpful. What is not helpful about how the NHS system works for you?

K: When I go to see a hospital consultant, not always having my records in front of them … more often than not, I think.

What, they don't have your records, so how do they know about you?

K: They've got basic information about me … and I go regularly, so it's whether they haven't got them out of the filing room or wherever … if you're not well, the last thing you want to do is sit and try and tell them what's wrong with you.

In the hospital, I've got two diabetic doctors I see. I've named one as one I would like to see all the time. I've got my ophthalmic … I always see the same one. And the gastro, I always see the same one. But on others, it's hit and miss. And it's just going through how you've been and my ophthalmic, he knows me, so he can tell if I'm not well. And I know that it isn't always possible to see the same doctor because of illness and holidays but it's … continuity of care's definitely important …

I've got fibromyalgia as well. It's when you've got trigger points on your body and it's like an arthritic pain, but it's in the muscle, and you get fatigue with it. I get bad fatigue with it. I've only got to have a shower some days and I've got to go back to bed because I'm just exhausted. I've been on two pain-management courses. And they're all well and good but it isn't in my head, it's in my body. And I know that I've got pain, and it's all right saying, try to think positively, but when you're in constant pain, all day, every day, it's very hard. So, yes, seeing a pain consultant, which I am due to be seeing, I'm looking forward to. Not many people can say that, can they? Yay-hay.

On the psychological side, I have seen either the GP or the diabetic nurse at the surgery. Because of everything that I've got wrong with me, it's all medical and I get very depressed … because if something else comes up or it's like when they told me I'd got the arthritis in my toes … and the GP has asked if I want to be referred to talk to somebody. A few years ago I was actually sent to the psychiatric hospital to see a psychiatrist who actually dealt with health issues and depression … He was very, very good. And I really wished I could go back, to be honest.

They tried to see if they can get me back there, they really did help. Because they understood when something happened, why I was getting depressed, and it was a vicious circle. I'd get an illness, then I'd get depressed. And then probably I'd be okay for a while, then something else would come up and it was just going round and round in circles and I'm never going to be any different. I'm not going to get better. But just having somebody to talk to is … and the GPs just don't have time to sit and listen to you …

I'd love to go back to work. I'd love to just say, I could do one morning, but I know that if I did that, I'd be useless the following day, and it's no quality of life. And I want to have some, so …

The other thing – and you might not want to talk about this – but the other thing that just occurs to me is the strain and whether your husband has ever been given any support by the NHS?

K: No, he hasn't.

Has he been offered any?

K: No.

Story 8: Tim

Tim, aged 32 at the time of telling his story, has epilepsy, which was diagnosed when he was a young child. He recalls the challenges of being a schoolboy with epilepsy and the problems of stigma. He describes the difficulty of finding and keeping a good specialist and the importance of family and friends. He describes some outstanding examples of care. He talks about the difficulty of controlling his seizures, the pros and cons of support groups, and how epilepsy has influenced his identity.

Tim: I first found out about my epilepsy when I was over at a childminder's house and I was just playing games, and ended up having a seizure. Then because of that, went to the doctor's, had lots of different tests, some of the tests were for photosensitivity. At that point, I was found to be photosensitive, and I had loads and loads of seizures over time. And when it came to puberty, the seizures I had slightly changed and it wasn't so much about photosensitive seizures, they were seizures that were unpredictable. I'm that way now, most of my seizures, like, the most I have is two in a day, the least I have is one in two years, but at the moment they're like every few months. The worst part is how unpredictable they are. I get no warning whatsoever, but they seem to be happening round the mornings at the moment. But the pattern sometimes changes …

My mum didn't know what to do or say about the initial seizure at the childminder's. She had suspicions of what it could be but she didn't actually know, and my school, they were just as bad about that. At that time, I was about 6 or 7, people's information about epilepsy really wasn't very good back then, and my primary school did not know what to do about it. I had various seizures back then and the headmaster would even call my sister off of the playing field to come and help because the school knew that little about it.

It seemed like an unknown condition to most people. I'd have a seizure after doing the fun run and because I'd be so confused, like, let's say, where would your parents be, I'd say they pick me up after school because I was in a dazed condition even though if I was in a normal condition, I would have said I get picked up by childminders, and they'd walk me up and down the front of the school in my dazed condition trying to find my mum that wasn't going to be there. The whole thing, the lack of knowledge was quite substantial.

But then when we came to secondary school, the school itself still didn't seem to know that much, but some of the services that were being offered, like visits from epilepsy nurses, that helped a lot, because people seemed to understand a bit better, but it's only really been in the last five or ten years that people have started to understand it slightly better. It really does seem to have been a very slow progress because there's even the one half of the population that seems to think really dodgy things about epilepsy, like, are you cursed, and things like that. You've got a whole load of people who just either flat-out don't know, or think weird things about it, like my girlfriend's father thinks that I'm possessed by a djinn … Some really weird stuff.

I've had some very pleasant experiences with the NHS where the nurses have been amazing. I cannot fault the nurses and the emergency services. They have been the kindest, most lovely people you will ever meet. The paramedics are the best. Every single time they've come to the scene to help me, they have been really kind, really attentive and made jokes as they've helped you, and just made everything nicer. They made you feel safe and understood and cared for because they knew about your condition. I had a seizure in the park and they did the same. I've had a seizure at the front of the cinema and there I had people saying, is he dead and things like that. It makes you feel crap about yourself, and they come and they clear the area and they get you feeling better about yourself and help you to where you need to be.

And then there's the blood tests. I've had so many over the years. The ones who do the blood tests, if they are very knowledgeable of how to do it, you barely feel it. You don't even realise that the needle's in there sometimes. But then you get some of the ones who are very new, it's like a bloodbath. There was a student nurse and I felt bad for the guy … he missed the vein and then pulled it out, tried to put it back in again … and the amount of times he took to get blood … there was blood all over the floor because the guy just didn't quite know what he was doing …

I used to go to the children's hospital. I wasn't as much of a fan of the children's hospital because the queues were usually quite long and I had a wait time that must have been, like, I think the longest wait time was about four or five hours, and that's just not on.

And one of the doctors there, Dr X … he messed me up properly, like you can't have an investigation into him now because he's died, but the guy, he just did bad. He ended up overdosing me and I ended up coming into hospital for a week vomiting as a result of his overdose. I was a teenager at the time. Teenagers are a little bit grumpy, and because of that, he called my parents into a side room and asked them if I was on drugs because I was grumpy and he asked me if I was on drugs separately, and I'm like, you're going to be properly offended if someone's asking you if you're on drugs just because you're annoyed? I was annoyed because he'd asked me something else inappropriate and then he asked me if I'm on drugs which is going to make me more annoyed, isn't it? I'd never have drugs, I don't understand why anybody would voluntarily have drugs because my meds have made me have double vision before and they've made me sick before – I don't know why anyone would want to.

You do a test when you first go into secondary school to see whereabouts your intellect is; they placed me at a certain level and I was quite happy with that, and then they did a separate one later on because the drugs were affecting me, and I was in all the top classes, and it had affected my cognitive thinking to the level that it knocked me down to all of the lowest groups with a helper and I still had no idea what was going on in most of my classes. My mum kept on pleading, saying, please take him off the drugs, they're messing his head up, and Dr X said, no, he's okay, it's all right, and it was getting really close to my exams, it could have messed my life up, and eventually after the test that definitively proved that my head was being messed up by them, he said, okay, we can take them off. Luckily, my intellect came back again, but it meant that I had to do months of catch-up classes to get Cs and, just thinking about it, I could have got my grades so much better but it really messed up part of my life that I could have done better.

I've had a lot of unpleasant stuff like that doctor thing. But then again, I was saying about how nice the nurses are? While I was in being sick for that week, there was a specific nurse, she was nice beyond compare, and she kept me going because I've almost got a phobia of being sick – I really hate it – and the amount I was being sick that week, it really had me down, and she kept me going for that week, and I actually thanked her at the end of the week, I gave her a present because she properly helped. I mean, I have a feeling it's probably the same with a lot of people about the NHS. It costs too much and the wait times are too long because there are too many people going for it, but I don't reckon many people could complain about the nursing because they're brilliant.

I just hope that the older generation of doctors isn't like Dr X, because they seem to think that they know better than a lot of people and the nurses … I mean, the nurse who was treating me, her and Mum both agreed on it and it's what ended up making me better in the end. He seemed to think he knew better than both of them and in the end, he deferred to what they said because of me being continually ill at that point. But the nurse knew better than him in the end. I just hope that those older generation of doctors listen to the nurses if the nurses actually are making sense. I hope they don't think they know better just because of their rank. That type of thing. I hope there's not a lot of pride that makes them think automatically they know better.

The doctors … I think some of the older doctors are just … I don't know if they're still with the times. Like Dr X also had my mum and sister come in for checks of random moles to see if there was any link between that and my epilepsy and I don't think that helped at all, to be honest.

Did you ever make a complaint about this doctor?

T: Strangely, we didn't. At the time, we just thought, well, that was annoying. We wished we had done it, in hindsight. But you can't really do something when someone's died, can you? But I also feel that suing the NHS is like stabbing yourself in the foot, because if you take money away from the NHS, it's taking money away from the people that treat you.

Most of the doctors I've had have really strongly varied and my epilepsy, they've all given suggestions and it hasn't helped … my body seems to get used to my meds after a certain time. Like it helps for a bit, and then my body adapts and then I start having seizures at the same frequency again. One of the doctors at one point said I'm in about the 30 per cent of people that is hard to treat with meds and I was also told that at the moment I'm inoperable for surgery, because I've had a lot of scans for seeing if I was possible for surgery, and they said the per cent is very, very low that it would actually be a success because of the amount of knowledge they have on it. So we're not going with that; I don't want to become a vegetable or anything.

I've had so many tests. I went in and had the videotelemetry test, where you're in for a week. Hardly anybody was believing me when my mum was saying about having seizures on both sides, because it was usually whatever side it was happening on, my head would turn in the other direction and during that week I had seizures on both sides, because my head turned in both different directions and they were speculating after that point that they think that my epilepsy was in the frontal lobe somewhere between the left and right side of the brain. But in a lot of scans, they couldn't exactly tell whereabouts it was.

And one of the tests for intelligence, they decided that my intellect wasn't the thing in question, it was the processing speed. They said that sometimes it takes me longer to get to the answer but I always get the answer, which, yes, I was happy with that because that's what I was trying to explain to people that the tablets seemed to be dulling the speed of my thinking, which I already had figured that one out … I suggest this to anybody: if you can, try and get a social group and have board and card game games days; it's helped my cognitive thinking speed quite a lot.

That's really interesting. So are you currently under the care of a consultant?

T: Well, we're trying to be because we ended up going through quite a few doctors and we got referred to Dr Y and he was quite decent. And then it got to a point where he started saying, if it ain't broke, don't fix it, but we felt like it still was broken because I was still having lots of uncontrolled seizures and we felt like he wasn't giving us any new options, so we said we're going to try and get another opinion. So we started going to him and a London doctor as well and we travelled down to see Dr Z. and we'd get different opinions from them. After a while Dr Y put me off his list and eventually it got to a point where Dr Z ended up saying, well, there's not much more we can really do here either.

We tried to get back with Dr Y but he's totally chock-a-block for ages. We would have probably stayed with the London hospital for a little bit longer but we ended up having our appointments postponed and postponed. We had three letters that were postponing my appointment and we just thought, this is stupid, we're not being seen at all.

So we're now at a point where we're seeing the person for my vagus nerve thing because I've got a VNS device [vagus nerve stimulation device inserted into the chest which can prevent seizures]. It flat-out doesn't stop my seizures but I do feel it helps my recovery time. That can't be anything but good because, working in retail, if you're not in work, you don't get paid and the amount of money I think I've probably lost over the years as a result of not being in work … She's dealing with that and talking to me about my epilepsy, but we're trying to get referred back to the local hospital because we've run out of leads here. We don't have a doctor in the local hospital and we don't have one in London anymore. We're going through processes to get hold of a lady who is one of three specialists in XXX, so we might have another one soon …

… I've tried so many different meds that haven't worked or they have worked for a time and then haven't been effective after a while. I went for the VNS thing because I thought it's worth giving it a go, I mean, it's something we haven't tried. Dr Z then suggested a different medication, but I'd seen the side effects and I did not want to risk it because even though they were low chances, it can permanently change your personality or cause homicidal thoughts … I'm not going to do it.

My epilepsy, if I have a lack of sleep, lack of food or stress, it doesn't cause it but it has an increased chance, so I'm just trying to avoid things that will increase the chances at the moment.

I try to do things that will make it easier on me, like at work, I still do some things that are stressful but I'm not going to do things that will stress me to a level that's going to increase my likelihood of having a seizure. I know that after having a massive argument with my girlfriend, it's slightly more likely, or if I've had a massive cold, I am more likely. Sometimes around inoculation season, I know I should get an inoculation but I'm almost certain within a week of having the inoculation I will have a seizure. I know that for certain because it's happened every inoculation I've had, and I don't want to break the record of how long I've been seizure-free for now, because I'm enjoying a seizure-free patch now and I don't want to jinx it or anything.

In terms of getting help, if the seizure lasts too long or if I have two in a row, then they call the ambulance. My mum and dad have dealt with it quite a lot so they don't call an ambulance out straightaway. But my girlfriend is a little bit more jumpy about it because she hasn't dealt with quite as many and she is more inclined to call the ambulance, but she does try and wait for the time limit if she can. My friends have got a lot better at dealing with seizures: the ones I have known longer, they've had to stop the car and deal with it at the side of the road before, or just … well, some of my friends, I've got a friend who I've known for about twenty-seven years now and he's just got used to it over time, so he's okay with dealing with it now. They don't tend to immediately call the ambulance out.

When I do get taken in the ambulance to the hospital, they do some checks on me, if I've got injuries, which I usually do have, because I'm quite tall and I fall over and bite my tongue sometimes. In the past I've had one where I've fallen down and split my eyebrow and I had to have stitches. I've fallen into thorn bushes before.

I've had a lot of nasty stuff happen, so they usually deal with my injuries, check if I'm okay, if I've got a concussion or whatever's wrong with me, and after a while, if I seem to be coming back to me again, they let me out if my parents are there and my parents take me home, and I lie down on the sofa and they bring me some food and drink that I can actually have. Like they might give me a jelly or custard or something because if I've bitten my tongue, it really hurts to eat normal stuff at that time, so I'll just have some softer food until my tongue's not so sore. I'll have a large nap and try and have painkillers and things like that.

My mum and dad get a little bit teary because it upsets them every single time obviously … I'm, like, that was a nice one, wasn't it? When we've had no seizures for a bit and they'll be, like, well, that's messed it up, hasn't it? And then we'll say we'll have to write all of this down. My mum's got a massive book, a seizure diary of every seizure I've ever had, and she's written down all of the details of what happened, when it happened and everything, because usually when I'm out for the count, my mum's the one that sees most of it and can tell the doctor better than me, so my partner and my mum are usually the ones that come with me because I can only tell the bits afterward, if I remember it, which is very rare, the bit beforehand, and it's usually the people who are around me that are able to tell the doctor most of the details.

I have to rely on my support network, You've got to get yourself a good support network, like your friends and family. If you don't, then the doctors aren't going to know all the details.

It properly scared my girlfriend when she first started going out with me. She knew I had epilepsy, I'd told her, but it's not really enough to prepare you for someone that hasn't seen a seizure before. My girlfriend's Muslim and I'm not of any religion; her mum and sister were fine with it because her mum's a teacher so she's dealt with people that have had epilepsy before, but the dad, he's quite superstitious … my girlfriend's told me that he would think that I was possessed by a djinn. So his side of the family really would be very superstitious of it and think very strange things of it because they wouldn't believe what the medical community would tell them.

There is a lot of prejudice, to be honest. Almost every job that I've had has said things like, oh, we need more people like you, you're doing brilliantly, and things like that, and then the first seizure I have, within about a week they make an excuse and get rid of me. That's happened almost every single job I've had, including places that are supposed to be disability positive like the British Heart Foundation. But now I'm at Morrison's, they've been quite good. I even had a seizure at my induction, and they said to me that it's okay, you can come in and redo the induction next week.

Is your GP involved in this at all?

T: I don't feel like my local doctor really knows very much because I think she's a maternity specialist and I've gone to her before and I've started talking about my VNS device and she had no idea what I was talking about and I actually saw her looking it up on Google … it loses all their credibility when you know more about a certain thing that your doctor does. I'm sure she knows a lot about maternity stuff but when it comes to my epilepsy, I really don't feel like she knows very much about it. Me and my mum probably know more about epilepsy than she does – it's a bit worrying.

She's more happy to give out some pills than she is to talk about it because I don't think she knows very much about it.

I did a campaign called “I am more than epilepsy” because of how people view you when you've got it, and I'm not going to mention all of the people that I interviewed. But the one I wanted to mention, out of all of the interviews, was a lady called A and her son B who had epilepsy and his was quite bad. It was making his development go backwards and he was forgetting things that he used to know.

I talked to A about various things because I don't think at the beginning she actually had a consultant, and there was a lot of stuff she did not know, and the hospital was quite far for her to get to. By the time we'd left, having interviewed her, she was really, really happy and on the verge of tears because she actually felt she had a link, because she didn't have the consultant. And I actually shared my email address with all of them, and I talked to A quite frequently about things to do with B. I shared my experiences of epilepsy and different things that I thought might help him and she was so happy about it.

When I made the whole “I am more than epilepsy” campaign, I initially set out to try and get an even balance of men and women and of lots of different faiths and cultures, and I totally found that difficult because of either different superstitions or taboos; I found out that there was a lot more Caucasian people going for it and it seemed like there were more men interested in talking about it. I was told about somebody who they ended up getting almost condemned by their family because of having epilepsy and people would keep them away from other people, saying that they're possessed, stay away from them.

But, as hidden disabilities, there's a lot of times where … with jobs, I've had people saying, can you make a cup of tea? Which is a silly thing to say to me because when I'm not having a seizure, like most of the time, yes, I can make a cup of tea, but for me to make a cup of tea when I've had a seizure or directly before or after a seizure is very dangerous. So I avoid those type of job positions because I don't want to have a risk of maiming myself in some way. I've already got loads of scars, I've got the VNS scar, I've got a scar on my eyebrow, I've got a scar on my chest. I don't want to add to the list of scars. I'm sure most people with epilepsy have got scars because of similar things.

Around the end of primary school and throughout secondary school, I was on some meds, I had a lot of people saying things about me, not good things about me. I stuck up for myself because I'm the type of person to stick up for myself, but if you're a more mild-mannered type of person, you're more susceptible to bullying, and I do worry about people like that, because some of the meds that I had during secondary school made me slightly more angry because of it, so to stop me getting into trouble with teachers at school, they said, if you're starting to feel angry, tell the person in charge of the class and come to me and sometimes I got put in the library and I was told to just sit there for a while until I calmed down a bit. But I don't really think that actually helped me in the long run: it was a way for the teachers not having to deal with it, because they didn't fully know how to deal with it. Teachers nowadays are a lot better at dealing with it; back then it wasn't really the greatest.

I'm 32 now. I think it's a slightly different generation. When I was going through school, if it wasn't a visible thing, people just didn't think it was there. The whole campaign of making unseen conditions known about, that's definitely helped quite a bit.

Sometimes because of some people feeling alone, they want to talk … But I do feel that, quite often, people at some of the meet-up groups go because epilepsy is their life. A lot of people that went to the group I was at had nothing else to talk about … it made them feel special or different in some way because it's like my epilepsy is me, I am this. That's why I made that “I am more than epilepsy” campaign. More young people, they need to feel like their condition is not defining them. Epilepsy is just something that you're going to live with, like an annoying friend that keeps bugging you every now and then. A lot of the younger generation want some people that they can probably socialise with and occasionally ask questions as a group of close friends that might share the same condition. I really wanted to start something up, like you might go bowling, but you all share the same condition so you can all help each other if you want to, swap phone numbers if you want, call up your friend that has epilepsy, ask a question, something like that, instead of just let's all complain about our conditions, because I don't think that's productive. Instead of being an agony aunt, you have a bunch of friends.

Tim, thank you so much for talking to me.

T: Not at all, it's nice to be able to talk to somebody who actually listens to your history …

Story 9: Joanna

Joanna has Ehlers-Danlos syndrome (EDS), a rare condition, and various associated complications. She has experienced high-handed doctors, a struggle to get a diagnosis, fragmentation of care and many attempts to get access to advice and treatment. She is the only carer for her grown-up son who shares the same disorder, and he also has autism, which significantly reduces her freedom to get out and socialise. Her son struggles with various health problems. They have found it difficult to get into an active dialogue with specialists who could help him and there have been delays in getting the right diagnostic tests.

Joanna: My recent experience has summarised for me how easy it is to overlook making something patient-centred … I've had a rash and it came and it went and it came and it went and eventually I showed it to my GP and then I got an opportunistic fungal rash with it. And also, there was something going on with my toenails that was a bit strange and they decided to check that for a fungal toenail infection, even though it was nothing like when I'd previously had one.

And, previously, I'd used pulsed itraconazole and that had been absolutely fine and it had cleared it up. So, they sent away my toenails, and it came back saying that they saw a fungal infection.

But the first I knew about it was that the GP had already ordered a prescription and because I am with Pharmacy to You, they had already processed it and sent it out to me by the time I realised what was going on. And, when I looked the drug up on the Internet, coffee was contra-indicated: you shouldn't have coffee or caffeine with it.

And I thought, oh no, three months of this drug, because it's not pulsed itraconazole, and coffee is one of my last pleasures in life. Because I'm a carer for my son, I don't go out, I can't meet friends for coffee or anything like that. When he was little, he was having huge meltdowns and I had to stop going out with my friends that also had small children. And so, I started buying really good high-quality coffee, and this is a really big part of my day. It is a ritual. I have a cup with breakfast, a cup mid-morning and a cup with lunch; and also, I have it with my paracetamol, so it's very important to me. And for three months to have to not do that at all, I would have liked to have talked about this first. So, we went to see my GP yesterday, I mean, when I say I'm in the middle of this, I really am in the middle of this. We had made the appointment three weeks ago for other things, for both my son and myself. We always make a double appointment for the two of us together.

And we were getting on quite well with talking about my son's difficulties and then he said, right, over to you. You've got the drugs now, you've got the prescription? And I said, well, yeah, it's about that. It didn't feel very patient-centred because you'd made this choice without discussing it with me first and it means I have to give up coffee and I'd rather go onto pulsed itraconazole because I've had it before, I know it works.

And he got quite defensive; and the whole appointment after that became very tense. And I thought about how am I going to talk to him about this, beforehand. I didn't want to blame him or be angry with him. I just wanted to say, hey, I don't think this one is the right one for me, I'd rather that one.

And, he's going … what makes you think you can't have coffee with it? I said, well, it actually says it on the leaflet. And I got the leaflet out … And he goes, oh, well, just don't take it with coffee, take it in the evening instead of in the morning. And I'm thinking, well, I've looked it up and it's not that, it's the metabolism of the coffee, of the caffeine that's the problem, it's not that you don't take it with it, it's that you don't take it at all.

But the whole appointment had become very tense and it was very difficult for me to put forward how I felt about it. I don't want to take this drug, I want to take a different drug, but also I want to have a really good relationship with my GP and I don't want to have this uncomfortable feeling, where I have to disagree with them almost … I think a better response would have been, oh, I'm sorry. I hadn't really thought about that. Let's talk about it. I didn't mean to cause you upset, let's talk about your worries about this drug …

This is a good GP. We've had problems with our previous GP at a previous surgery. We ended up leaving the surgery, along with a lot of other people. We depend on a GP to refer to secondary care and to help coordinate care because my son and I both have the connective tissue disorder, Ehlers-Danlos syndrome, the hypermobility type; and my son is more affected by it than me. He is 23 and I am in my 50s. It is really important that we have a good relationship with our GP and that we can trust them and that they can trust us. It was a two-way trust problem yesterday. Because I thought I could trust him but because I think he's got this drug wrong … I'm thinking, but that's not what it says … when I looked it up. I need to trust him, but can I? And, the way he said to me, well, where did you read this? made me think that maybe he doesn't trust me. But that's not the sort of signals that I've had from him before because before he's said, oh, I like people that look things up on the Internet, it makes my job easier.

This has now put our relationship possibly on a different footing, where I now have to almost renegotiate the trust between us. It's something you end up having to do on your own because you can't just make another appointment to chat to them about it because they are so busy.

I haven't decided yet whether I'm going to write an email to him to explain in more detail why I wasn't happy with it. I could try the drug and see what happens. Maybe it will be fine, but maybe it won't be. Maybe I need to try it to prove to him that you shouldn't be having coffee at the same time as you are taking this drug. I don't want to change GPs, and I know that people do that if they have a run-in with a GP, they just go to a different GP, but because of our conditions, it's best to have continuity of care.

The rest of the appointment did pick up again. It turns out I have a ganglion on one of the tendons for one of my fingers, and I'd had trigger finger problems and things like that. So, it did pick up again, he was able to do something physical, test my finger. So, we did both try to recover. So, I think it possibly might be fine. If I take this drug and then I don't have any reaction to it and I can still carry on drinking coffee, maybe he will be right and I was wrong. But I am still undecided how to do it.

At the same time, I'm thinking medicine shouldn't be this hard when we have long-term conditions like my son and I have … I've got hyperthyroid, so, there is that to keep monitoring; I've got osteoarthritis, I'm waiting for a second opinion from a rheumatologist. And then my son is in the middle of an investigation for an autonomic disorder, so I can't just not go back, or go back to see any old GP. We are sort of in the middle of things. And the acceptance that we are going to be in the middle of things for the rest of our lives because we've got long-term conditions.

I think the silos of the NHS make care very difficult sometimes. Because, with my son, I've done what they call the poor man's tilt-table test, so I've tested my son's heart rate and it goes above the recommended amount, which suggests he probably has PoTS [Postural Tachycardia Syndrome, an abnormal increase in heart rate that occurs after sitting up or standing]. So, I've been saying this for six years, but trying to get anybody to take it any more seriously than that has been very difficult.

We left the other surgery because they were refusing to refer us anywhere. I managed to get a referral to a respiratory clinic to eliminate sleep apnoea. We think his sleep is part of the problem with this severe fatigue he has, which is probably caused by the PoTS.

So, we end up with the respiratory clinic that says, no, it's not respiratory, we're going to send you to XXX to the neuroscience sleep clinic there. So, we have a day out there and they say, oh, it's not us. We think your fatigue is caused by a fatigue problem, so they send us down to YYY to the fatigue clinic, where they say, well, it's not chronic fatigue syndrome, you've got fatigue related to Ehlers-Danlos and probably an autonomic disorder. We think you ought to see cardiology.

And then finally, our new GP, the one that I want to trust, that I had trusted until recently, said, okay, I'll refer you to cardiology. And so, we were referred to cardiology, and then on to an echocardiogram at one hospital and then a tilt-table test at another hospital. And then we get the report from the tilt-table test and the expert consultant that deals with those says, I'm going to talk to the consultant that runs the tilt-table test and we'll decide what the best course is.

And, I'm thinking after all that, all those hospitals, all those different tests, we end up where I said we should have been in the first place, six years ago. But then again, we're back to them again talking about us without us. There's a couple of things in the report they got a bit wrong; and my son said, well, that's not right. But we're left with no way of being at that table.

And, it doesn't have to be a physical table, Skype or whatever, telephones we can use, but they are going to discuss what to do without us being there to talk about it with them. It feels like we're still being kept on the outside of the door while they are discussing it inside the room. And, if we're really lucky we get to listen through the door, rather than actually being part of the team to discuss what is going on and where we can move forward from it.

One of the things that they said was, because my son has pain in his feet, it is indicative of PoTS but they are unsure if maybe the pain in his feet caused his heart rate to go up. And my son, straightaway, when I read the report to him, he said, well, no, because the pain doesn't start straightaway. And so they've made an assumption that the pain started straightaway when he was tilted up, when it didn't; it didn't start for a few minutes, or several minutes.

I did email the consultant's secretary to tell her this and ask her to pass that information on. But one of the things that happens, and this has happened to me another time, is that you get these reports back from the consultant but there's no indication of whether or not you will be called in for another appointment or what you can do if you have any information. There's no email address necessarily given, except perhaps for the secretary. This is what we've found so hard. You want to discuss it further if you are anything like us.

Now, I don't know if the secretary is going to take the initiative to actually tell the consultant, either of the consultants, because there's two consultants involved. And yet, yesterday the GP said, why don't you email both consultants? find the other consultant's NHS email address, bypass the secretary and email them yourself to tell them that? So, we may well do that today.

I ended up having to make a formal complaint against a rheumatologist, which is why I'm seeking a second opinion, because I went to them with joint problems, trigger fingers and various other things; but also I wanted a diagnosis of EDS to be put in my notes, because I was having problems with physiotherapists, for instance, saying, what makes you think you've got EDS, there's nothing in your notes?

And I asked the GP to diagnose me because they can, because there's the RCGP [Royal College of General Practitioners] toolkit now. And the GPs refuse; they say, no, we haven't got time, we're not going to do that. We'll get rheumatology to do that. So, I went to rheumatology and the rheumatologist was twenty minutes late for the appointment and it was the first appointment for the day. So, I think he may have been distracted by something or there was something going on there. And I felt that he wasn't really letting me talk about what pain, for instance, and things like that.

But the letter came back from him saying, you probably have EDS but you definitely have fibromyalgia. And I'm thinking, no, I don't have fibromyalgia; I don't meet the criteria. And so I rang the secretary to say this and say, I dispute the fibromyalgia, but, oh, it said he was waiting for the blood test results and the X-rays. And I said, well, you're going to have a long time to wait for the blood test results, he didn't request any. And she was, oh, that's why we haven't got them back yet.

And, at the appointment he had actually said, oh, you've done all the blood tests you need at your GP, we don't need any more. We just need the X-rays. So, then the second letter comes back saying, thanks for pointing out that you haven't had the blood tests; the X-rays look fine, and didn't mention the fibromyalgia, so I thought, oh, he's dropped that one.

And then the third letter comes saying, osteoarthritis; probably EDS, definitely … and widespread chronic pain of the fibromyalgia type and that was it, there was nothing to say, to bring me in for another appointment. So there was no opportunity to discuss it. As far as I was concerned, I'd already pointed out to the secretary, which was my only contact with the consultant, that I disagreed with the fibromyalgia.

So, I rang PALS [Patient Advice and Liaison Service], the GP said, yeah, this isn't right. I also did a subject access request to get my X-rays because something didn't feel right about it and the foot X-ray actually said in the report, we need to see more X-rays because there's a shadow on there. There was a luminosity that wasn't there last time. And that was buried in the report and the rheumatologist didn't mention it.

So the GP said, go onto PALS and PALS said, well, we can ask him to reverse the diagnosis, but it might be best if you make a formal complaint at the same time if you're going to do it. So I ended up having to make a formal complaint. And how the formal complaints work, they don't talk to you, they talk to the people at PALS and PALS talk to me.

Do I get the impression you didn't really want to make a formal complaint but this is the process you have to go through?

J: Well, I thought that there was no other process to go through to get this sorted out. And he said, in his response back, I was surprised to get a formal complaint out of the blue. And I'm thinking, well, it was only out of the blue because you didn't invite me back for another appointment. I'd already expressed a disagreement with the diagnosis with your secretary. It's not my fault that she didn't pass that on to you. And he left it with, I could reverse the diagnosis but I think you should have a second opinion.

And I went back to PALS and said, would you just get them to reverse the diagnosis; so, it's taken out of my notes and I can't be bothered to go for a second opinion, this is getting ridiculous. I said, forget it. And they said, no, no, no, reading between the lines, he thinks he might have missed something. You need that second opinion.

But, in the meantime I'd been to see a physiotherapist on the advice of my GP, and she had said she just assumed everything was fibromyalgia and there was nothing wrong with me and nothing wrong with my hands. And when I asked her to look at the X-ray, she said, oh, there won't be any osteocytes on your hands. There's no bony growth because you're not hypermobile but you've got good range of movement.

And when I made her look at the X-rays she said, oh, it is an osteocytes, so, because he'd put down fibromyalgia I got poorer-quality treatment from the physiotherapist that just assumed it was all fibromyalgia and psychological rather than, actually there was osteocytes in my hand. There is a reason why my fingers look swollen; because there's lots of bony growths on them.

So, it would have been nice if, somewhere along the way, I didn't have to go through a formal complaint but there was just … have we got this wrong? Come on in and we'll talk about it again.

You are, by the sounds of it, a highly educated, motivated, knowledgeable and proactive person and if you can't make the system work for you, how is somebody who doesn't have those advantages going to make the system work?

J: One of the GPs that I've chosen not to see actually has a mug on his top shelf that says, don't confuse my seven years at med school with your Google search. Which, actually, intelligent people find very offensive. Because, don't confuse your twenty-minute lecture at medical school on my condition with my fifty-seven years of living with it.

I'm on the fringes of support groups. I don't go all-in for going to all the support group meetings, but I belong to some online support groups and I run a support group – I have done for many years – for families who home educate children who have special needs and disabilities. And a lot of them, their children have very rare conditions. There seems to be two different kinds of people that come up against these problems in the NHS. Either they become like me and they advocate for their family or their children or whoever it is, or themselves, and they get very frustrated but they keep pushing along and try to make things better.

Another sort of family are the ones that give up on the NHS and they go to alternative things, and that can get them into a lot of trouble. They end up with a quack or they end up spending a lot of money on things that don't work, or they go for scary alternative things: there is this thing of bleach for autism, and that's very difficult to watch people be forced out of the NHS because nobody in the NHS has listened to them and they haven't been able to navigate around the NHS to get the services they need.

And then there's the others that just give up. And I think my son is like that. He said, Mum, I think I just want to give up. He's got problems with his eyes; he's got dry-eye disease now. And he said, I can't be bothered anymore. The drops that worked for him we can't get anymore: they are not on the list. He's 23 but he's got autism as well and he's just like, Mum, you deal with it if you can but I just don't want to deal with it anymore. I can't do it.

Those are the people that the NHS never see again and I get the feeling that GPs and nurse practitioners and sometimes the consultants go, well, that must have gone well because I saw them and I said, well, you've probably got this and now they've gone away, so they must be fine about it. And what they don't see is the patients that talk together about how awful and how difficult the NHS is and how to navigate through it, and how to get something out of it.

I think one of the problems with a rare condition is that collectively they are very common. They start looking on the Internet and they go, wow, I think this is it. This explains everything. So, they go in and they say this to their GP and their GP says, oh no, you can't possibly have that, that's a rare condition. And I've actually had a GP say to me, but the rate of Ehlers-Danlos is 1 in 5,000 and we only have 4,000 patients at our GP surgery, therefore we can't have anybody with EDS, it's unlikely. And you think, wow, that person doesn't understand statistics and numbers.

Then there's a paper that came out recently that was done in Wales, and they found the prevalence of EDS was 1 in 500. How can it be 1 in 500 and yet the GPs are telling patients, it's very rare? And I got to thinking, maybe the GPs, they are not talking to each other and so they think, I'm really unlucky, I've got a patient that has EDS, not realising that every other GP is saying, oh gosh, I'm really unlucky I've got a patient with EDS. This idea that it's rare so you can't have it, means that the patient has to work even harder and then you start to question yourself, you start to say, well, maybe I don't have it? Maybe it is all in my mind? Maybe it is a psychological thing?

And that can be very dangerous for patients too because there is a high rate of depression found in patients with EDS and it's years of not being believed by the system that they have this condition, which was thought to be rare but actually isn't as rare as they thought it was.

We go on to talk about Joanna's son.

J: One of the things that is supposed to happen is these special, learning disability appointments that everybody with a learning disability who is registered with their GP is supposed to have a check-up every year. And they've now added autism into this as well. Most parents will say, really, are we supposed to have these appointments for the kids every year? We haven't had one. And it does seem to be a missed opportunity to have the nurse from the GP surgery sit down with the patient and their carer or parent to say, okay, so, what's going on? Can we coordinate this? Or, what are we missing here? What can we do? Who can we see that will help? For instance, with my son, if we'd had a nurse advocate saying to the GP, the tilt-table test that the mum has done, it looks like we should be going straight to cardiology. It would have saved time and money if we'd gone straight there.

In fact, they did lend us a blood-pressure cuff, and I used it to do his heart rate. And, when I gave it back to the nursing assistant at the surgery that organised it, I said, so what you are looking for here? She says, yes, I add it all up and then average it out. And I said, no, we're looking for peaks; we're looking for the outliers not the average.

And so, when she handed it to the GP and I saw it later in my son's notes, when we got his full notes access, she had averaged it out and given it to the GP as an average, which is completely not what should have been going on. And if a senior nurse, somebody who actually knows about things, had been able to sit down with us … it doesn't have to be a GP because I know they're really busy. But somebody to sit down and go through everything and get all the details and all the blood tests together, and then present it to the GP and the GP can say, okay, we know it's reliable, because we don't want to trust these parents. Because that's what it feels like, it's the parent and nobody trusts you; so, it's coming via the nurse. And then they can look at it and say, okay, yeah, let's … let's see what the most appropriate thing to do is. But it seems to be that coordination is just completely missing.

Yes, and some of the other things you were saying were making me think about care planning and the conversations that go into that, and the need for somebody with sufficient clout to advocate on behalf of the family, particularly if relationships have become rather frosty or fraught. And that would be especially useful for families that don't have the education and confidence to be able to battle the system and they might just crawl away as you were saying earlier.

J: I used to be chair of the patient participation group [PPG] at my last surgery till it was taken over; and my last act just before I left, at the last AGM we had about twenty to thirty patients in the room, plus a GP and the practice manager and assistant practice manager, and I said, what do you want to see the surgery doing over the next year? A few older patients said, well, we've got these care plans but the doctors don't seem to know about them anymore.

And so, we turned to the staff, and the assistant practice manager said, I've heard there was a pilot for these care plans a couple of years ago.

And three patients said straightaway, yes, that was really great because we were given a card, so we knew who to contact when something went wrong. The surgery would say, yes, you can have an appointment straightaway.

And the GP said, would you like to do that again, and they all said, yes, we'd like to have this care plan so that we know where we are and where you are. And I was speaking to one of these people several months later, after I'd left the surgery, and I said, so have they followed up with it. And she said, no, they didn't follow up with it.

I felt really awful that I'd left the surgery and I'd left the PPG because I wasn't able to go back and say, at the AGM you agreed that you would look into doing these care plans again. But it seems to be, in the NHS there's lots of little pilot studies and lots of little trials and, oh yeah, that really works. And the patients go, yeah, this is great, this is what we want, but there's no incentive to keep it going, or the staff change and it just disappears.

It feels that the NHS is fire-fighting so much and that they've become entrenched, everything is awful, what are we going to do? Without realising that if you just sat down and talked to the patient sometimes things would be easier, cheaper and happier. It feels like everything around you in the NHS is trying to stop you accessing services, so you are constantly fighting against that, rather than sitting down and saying, okay, so what's the best service for you? What is the best place to refer you to? Like this RCGP toolkit for GPs to diagnose Ehlers-Danlos, there's no need for the patients to actually go to a rheumatologist who probably has no interest or no experience in EDS if a GP can do it.

The conversation then turned to physical therapies for EDS.

J: Because it's a connective tissue disorder, it's something you've got for life and the physiotherapy has to be something that is done for life. And you may have some joints that act up, you may have other things that happen.

You can't be restricted to six weeks and you are discharged, or what happens now is just one appointment and you are discharged. The same happened with podiatry. We had a head of podiatry who had done a PhD and I actually read his dissertation and it was fascinating because I thought, this guy gets it. He said, we have to get away from this acute medical model of there is one thing wrong and it will be fixed and then you won't see us anymore, because that's not what's happening.

We recently had a most ludicrous situation. He has bespoke insoles made by the podiatrist but he also has boots supplied by the orthotics department. And the stitching had come apart on the boots so I rang up to see if we could get them repaired, because they are NHS property and so on. And they said, no, because it's been more than six months since you've seen the orthotics department so you have to get another referral from your GP.

So, I went to the GP and the GP says, I can't refer because there is no referral pathway in our system to refer straight to orthotics. You will have to go through podiatry, and I said, well, ironically, we are asking to see podiatry again as well, but this is ridiculous because this is NHS property. It is defective. The stitching on the boots had come undone. If there was a cobbler on every doorstep, I could get them fixed myself but then I would be told off for interfering with NHS property.

So, they let us bring the boots in anyway, without waiting for the referral from podiatry, which is a good thing because we still haven't seen the podiatrist. Luckily, we kept my son's old pair of boots but they are not as comfortable and they don't support his ankles properly. It was about eight weeks before the boots came back. So the whole thing was a complete palaver, going round and round in circles because the system is made for the system not for the patient.

I've often said that some aspects of the NHS should be run by Ocado, because it is actually a logistics company. My groceries arrive; my order comes every week. It always comes within a time slot. I never have to wait for it, unless there's been like something, a disaster on the motorway or something like that. If they can do all that, maybe they could arrange some of the administration side of the NHS as well. It seems a bit odd that there is this idea that the NHS is too big somehow. And maybe it is, and maybe that's where things should be done more locally.

Story 10: Jasmin

It took Jasmin four years to get a diagnosis of lupus, during which time she suffered stomach and joint pains, extreme tiredness, insomnia and a recurring skin condition. During this time she also gave birth to two children. In the end a private doctor got to the bottom of what was going on. It has been a battle to get the treatment that she needs.

Jasmin: My lupus symptoms weren't taken seriously. It took about four years to get diagnosed. And by then I was in a really bad way, I felt like my whole system was shutting down and I was having problems one after another, and I wasn't quite sure what was going on but I knew for sure there was something wrong.

I used to have pain in my upper stomach, bloating, nausea, a lack of appetite, I lost weight and I used to get cramps and I couldn't sleep very well and I was really, really tired. And I used to have itchy skin which would come on my cheek and my face and I used to get it under my armpits and my forehead.

So I had lots of symptoms … my body was all over the place, so I went to the doctor, but nothing much was done. Then the pain continued and one day it was unbearable, so I called NHS Direct. I was advised to go to the A&E, which, when I did, the tests said I had H pylori bacteria infection.

It's an infection in the stomach but I had suffered for a while before I could find that out. Then I got the treatment but shortly after that I continued getting the pains in the stomach, because sometimes it can come back, depending on maybe how long you've had it for. So, I decided to change my diet and I went gluten-free. I really changed a lot of different things just to see what was happening. Then after, I got diagnosed with irritable bowel syndrome [IBS] and hiatus hernia, but this is before they found out about the lupus. My body was just shutting down with one thing after another but the actual illness that I had, nobody could work out.

Later I got pregnant with my first son, about thirteen years ago. From the beginning of the pregnancy my lower back, the coccyx and the upper back was really bad and I was really, really tired, it was just unbearable. And my skin was very itchy and sensitive, especially on my face and I couldn't work out why and it used to swell up. So, I went to the doctor and he suggested maybe the creams I was using, or that is expected when you're pregnant to be very tired.

I took some time off work but I'd never felt like this before, it was really weird. Even walking, I felt like I was falling down into a hole … like when you feel like you've got no energy in your eyes.

I was so weak and I lost quite a lot of weight but my baby was growing normally because every time I went to check, everything was fine with the baby. So, I was lucky really because sometimes if you've got lupus you could lose the baby.

I'd never even heard of the word lupus before, so I never knew what was wrong. I think giving the doctor all the symptoms I was getting, maybe he could have put one and one together, but obviously he didn't and I didn't know. And sometimes you're just thinking, maybe am I making it up, am I crazy or what's going on? Can someone find out what's wrong with me?

After the pregnancy, I had the baby, the symptoms were still bad, so I had to have an epidural injection after the baby was born … I had to go and see an osteopath. I was doing it privately, for my back, nearly every other week … I've seen so many people … I went to a chiropractor, a physio, a cranial osteopath … I used to see them a lot … And one of the ladies who I was seeing said this is not normal, it's not right. There's something really not right with you because I see you one week and we treat you, within three or four days you're better and then you're back again.

I went back to the GP and he said maybe I need to take some time, and try to take some more rest, and painkillers. I was still suffering. He gave me different creams to try at home, maybe just to see … One time he said, maybe it's just a couple of spots and maybe it's not that bad. But I'd say to him, this is not just spots, they're really itchy, they're hurting and I feel it's swelling up.

So, I decided to go private because it was really affecting my sleep and, having a new-born baby as well, I found it really, really difficult. I told my husband, it'll be something which is going to kill me but it'd be really good to know what's going to kill me, because I didn't feel right. I used to go the baby group and I thought, I'm talking to the rest of the mums, they don't feel the same I'm feeling, so there's something really wrong with me. Sometimes I couldn't even carry the baby.

We've got private medical insurance, so I told my husband, I think we need to go and check somewhere else because I don't feel right. It was awful. Reflecting back, I felt like I wasn't listened to when I reported all my pain. So I went to a private doctor in London.

He was a dermatologist. Because I was seeing a chiropractor for my back I thought maybe if I see someone for my face, it could be sorted. Sometimes I would get big spots and they had a bit of pus, on my armpits, pubic area and on my face.

The private doctor was very good. He sent me for tests on my back, and they tested a lot of things. He was checking on where I worked, the environment I live in. I went to see him more after the summer because it was so bad. Sometimes because no one can seem to find out what's wrong with you, you just learn to just live and cope with it.

I got pregnant with my second son and the pregnancy again was really bad because my back was in a really bad way. And sometimes I would sit down and I'd have someone lift me up because when I sat down my pelvis softened. I couldn't lift myself up … sometimes people get that when you're pregnant. I was just over-exhausted. And you can't explain to someone how tired you are. And because I've always been a person who looks okay on the outside, sometimes you get ignored or people don't take you seriously.

The private doctor I was going to see was very helpful. One time I was really sore and he said, this is not normal. He took some photos and he said, I need to show this to my superior because I can't work out what's wrong.

He gave me some steroid injections to bring the swelling down and I got a bit better. He said, hmm, that's interesting. The next time I went in, he gave me another steroid injection and he said, if it's reacting to the steroid injection maybe there's something that we need to check. He asked: do your nails grow? My nails used to really grow and they stopped growing, my hair started falling out but then people say, oh well, you have babies, your hair doesn't grow as well as it used to, that's all it is. The doctor said, we need to take a biopsy … They cut one of the spots on my face and one on my armpit and that showed I've got lupus.

I really don't know how I coped. But my husband was very supportive and I was having to go private for everything, and I had to go all the way to London every time. Honestly, trust me, if I didn't have private insurance, I would not be here today and I'm not joking. Because lupus is very serious.

Now that you've got your diagnosis, is it a condition that you can manage reasonably successfully?

J: Yes, you can with the right medication, but when they put me on the medication, because my stomach was so sensitive, and I was so malnourished, I used to get cramps. That medication, it's called hydroxychloroquine, was too strong for me and my body couldn't handle it.

The doctor had to send me to another stomach specialist, where he had to clear my gut and give me a probiotic. And I had to cover up, I can't be in the sun. He wrote to my doctor and told him, this is her condition. And I went back to the GP and I said, you see, I had something really wrong with me but you didn't believe me.

And what did your GP say?

J: I wanted to change the GP, but in the end, I just thought, actually now he knows, let's see. Since then I feel like I've been treated differently.

Sometimes I wonder what would've happened if I didn't seek private medical help. And I wonder whether gender and the different healthcare experiences of men and women had a part to play with my late diagnosis. I don't know, it's really hard to tell. I think maybe it was because of my gender, my race, my ethnicity, I don't know. You're asking yourself, why? I've gone so many times to see him … Maybe it's because I'm young, was really hard to tell. I feel like it shouldn't have taken four years to be diagnosed with lupus. And I know lupus is a condition where sometimes it's difficult because you get so many symptoms. Maybe the doctors need to be a bit more educated and understanding about lupus, so that other people don't have to suffer as I have. I think what you can expect is that they're really keen to try and help you work out what it is.

That's how I felt with the dermatologist in London. He did everything he could, honestly.

Jasmin then went on to talk about an infection in her sinuses that went undetected, causing her to have unnecessary dental treatment:

J: At the same time with the lupus, I had problems with my sinuses. I'm really allergic. My eyes would just go watery, my nose would get blocked.

And I used to struggle more on my left-hand side, so everything on my left was so bad, from the head, from where the sinuses are on the top of the head, on the shoulder, the neck, the lower back and around my hips. And sometimes it'd be so bad, I'm not walking properly, it would start affecting my knees. So, I went to see the doctor and said, there's something really wrong with my sinuses. But for me I didn't think my sinuses was that bad, I just used to think it's in the summer. And sometimes it will affect my teeth. I used to think it's a toothache because it's like at the top of your jaw line as well. So, I went to the dentist and I just said, my teeth are really hurting so he said, let's do a root canal because it looks like you need a root canal. So, I had a root canal done and it was still really hurting. And it's expensive to have a root canal done.

Five months later it was still really hurting and I said, I don't get it, it's still hurting. And I said, it's so bad, just take the tooth out.

I had the tooth out. I was still getting the pain and I went back and I said, you know what, there's something really wrong. And he said, I need to send you to have a CT scan, it may be the sinuses, but to me it sounds like toothache. So, he put me on the waiting list. He had a look and he said, the waiting list for the sinuses at the NHS is long. I said, okay, I'll use my BUPA to go private. They saw me within five days. When the CT scan result came in, they called me and they said, emergency, you need to come and you need to have an operation.

The whole of my left side was a shadow, so they called me for an emergency operation. I used to spit yellow stuff when I brushed my teeth. And that comes of infection but because it never came out through my nose, it was just like draining into my gut, so in a way that's why I continued having problems with my stomach because all that bad stuff was draining into my gut.

The consultant removed so much, he said he'd not seen anything like it and he said, how have you lived like this? I don't get it. How have you lived like this? I said, I've been complaining but … I've had the teeth out, I've done this, I've done that, but I didn't know what was going on with me but I knew my left-hand side has not been functioning properly. And since the operation my lupus was a bit better, honestly. Because I think on top of the lupus, having all that draining into your gut every single day …

And did anybody at any point say that the two things might be related in some way, the lupus and the sinus?

J: Yes, the doctor for the sinuses said that maybe compromised my immune system. Lupus is when the body starts attacking itself, so because you're having all this bad stuff draining into your gut that the body didn't know what to do with itself, it started attacking itself … And if you've got a family history of thyroid or arthritis it's more likely because lupus is like an autoimmune illness.

I thought, now they know what's wrong with me maybe I can have an NHS identity. I see a dermatologist, she's ever so lovely, and I see her every couple of months, where they test my blood to make sure everything is okay.

And because as well, the tablets that I take for the lupus can make you blind, I have to have regular eye tests … I felt like one thing that has been really good in my body are my eyes. I go to a lupus group now and a couple of people have lost their eyesight, so I just keep hoping my eyes will be okay. And so far, so good.

Has the lupus group been helpful?

J: Yes, because, at the beginning, I never knew about lupus. I Googled it and, oh, my God, I'm dying. I just needed someone to talk to, someone who'd gone through … And I didn't even know any other people … Sometimes I find it a bit difficult because it reminds you of a difficult time. So sometimes it's good and sometimes it's not, because it depends on how I'm feeling, because I'm a very positive person.

When it comes to helping you learn to live with lupus and to manage the condition, who's been the most help to you?

J: I think my husband, and I would say that the dermatologist in London. And I'm really happy with the dermatologist I see now; yeah, she's really good, although, some things she can't control.

Story 11: Venetia

Venetia lives with chronic fatigue syndrome. She describes a lack of support for the condition, particularly from her GP. There is no local specialist clinical service and instead she researches online for information.

Venetia: I suppose it was just over three years ago now, it was over a summer. I remember I seemed to have two or three bouts of flu in a row and I was sleeping all the time, I just didn't seem to be able to recover. I went on a walking holiday in September and I was sleeping an awful lot and there was an 88-year-old who was also on the walking holiday and I was struggling to keep pace with her. On that holiday one of the other ladies took me aside and told me her story about how she'd had CFS [chronic fatigue syndrome] and how it had really compromised her life and she'd been, for a number of years, basically housebound. I'm thinking, gosh, this poor lady, that would be awful, I wonder why she's telling me about this … I came home and I went to the doctor's, but it was probably about five months before I got a diagnosis of CFS officially.

The first year was awful, particularly before I got a diagnosis and I didn't know what I was doing. I couldn't be ill because I wasn't allowed to be yet until I had the certificate. So you're trying to fight it and you're trying to go full steam ahead and it's just like slamming yourself into a concrete wall over and over again.

So that didn't work too well. Eventually, once I started understanding a bit more about pacing and what they recommend, then things improve and I went part-time at work and that helped massively. You get used to doing a lot less. Antidepressants made a huge difference as well, because if you're saying no to everything and doing a lot less, that can be a bit depressing, so the last two years have been much better. Although I've come off the antidepressants more recently, in September, and that's been shaky. Then my latest great hope is … I've got an appointment with an osteopath who reckons he can cure CFS. So that's worth throwing about £1,000 at. I'm thinking, if that works then great, and if that doesn't work I'm going to go back on the antidepressants and keep on my nice little slow steady even keel.

Let's talk now about what happened when you first went to the GP.

V: The first time they say, well, it's just flu, and you say, no, no, no, this has been three months now, I wouldn't have come to the doctor with flu. They say, yeah, it's probably flu. So, after you get over that hurdle … the first time that somebody told me about CFS were the doctors there. It's something that's haunted my entire illness. I should say, with CFS, a lot of the times when you're talking to the doctors, it's really hard because your brain doesn't work, your memory's shot, you can't think logically. I remember he said, I think you've got chronic fatigue syndrome and he explained that there wasn't a cure and then the words that he used were, you just have to accept that whatever it was you wanted to achieve in your life, you're not going to be able to. That's okay, because you don't really want to achieve these things anyway. It's just society telling you that. If you really think about it, you don't really want these things. But he never at any point stopped to ask me what it was that I wanted to achieve in my life. So I promptly burst into tears like an ordinary human being and he said, I don't understand why you're getting upset. I don't understand why anyone gets upset when I tell them about this. If I tell somebody that they've got a broken leg, and they can't run a marathon, well, they don't argue with me, so why is it different for chronic fatigue? When you're feeling low, those are the words that are going through your head and they just recycle. I can see what he's saying, there is some truth in what he's saying, but it's not what you first tell somebody that they've got CFS.

I remember going to see the consultant [specialising in CFS] and I had my little list because I knew my brain wasn't working so I'd written down all my symptoms on my phone. I was all ready and I prepped and I went in. I sat down and I got out my phone and I started, … and he said, no, hang on a second, and he brought out his list and he gave me the chronic fatigue checklist and he said, tick all the symptoms that you've got. It was a big list. It was a real relief because I went down the list and there was just a few that I didn't have. So you get a sense of I'm not a fraud, I'm not making this up, look I match, I'm official.

How did you feel when he produced his list and didn't let you use your list?

V: I wasn't too upset about it at that point. It was only actually much later when my brain kicked in and I suddenly thought, hang on, I had things on my list that weren't on his list and they never got talked about. Because as soon as the checklist was done, he said, yeah, you've got CFS, out you go. That was my entire experience of anyone who is supposedly an expert in CFS, at that level. There's been no follow-up from that whatsoever. They put you then through into the chronic fatigue treatment programme which is CBT [cognitive behaviour therapy] and physio.

You have graded exercise therapy which takes place in parallel to the CBT … The eight-week course on managing CFS was fabulous. I couldn't rate them highly enough … you learn your pacing and they do diaries and all that stuff. That was really, really good. Then the next course that they put you on after that was advanced CBT and that was great as well, because you learn how to not waste energy on thoughts … and then you're considered to be an expert in CFS and you fall off the end of the conveyor belt.

So have you not been back to a doctor since?

V: I've been to my GP again.

Right, but you never saw a consultant again?

V: No.

You've never seen a specialist again?

V: No.

So do you feel that that's a gap?

V: Yes, because an awful lot of people that you talk to with CFS, they struggle for years and then all of a sudden they find out, oh, I've actually got this other thing. With CFS, they don't know what causes it, so my suspicion is that there's not one thing that's CFS, it's multiple things. Now, probably several of those are already known about, but the more unusual, it's harder to get a diagnosis for them. I've no idea what tests my doctor did, because diagnosis for CFS is a diagnosis by exclusion. I was sent for umpteen blood tests but I've got no idea what those blood tests were for or the results.

I know one was for Vitamin D because the doctor came back and said your Vitamin D's terribly low and they put me on a really high dose. Then I rang the surgery and asked to have it retested as I'd been on this high dose for a while and I got another test, I saw a different doctor. And they said, woah, your Vitamin D is off the scale, you've got way too much Vitamin D, and they looked at my original results and said, that's a perfectly normal Vitamin D result … I don't have an awful lot of faith, to be honest. The same thing happened with my thyroid actually.

I'm not sure what else I expect them to do. But there's no follow-up … with my GP or with anybody … They did say that there would be follow-up things, but then the final course [on mindfulness] I actually dropped out halfway through because it was driving me mental. I tried so hard to stay on the course because I didn't want to piss them off and … mark my card for being … a difficult customer, patient, whatever you are. But I just couldn't cope with it anymore.

What's been a highlight or a good thing that's happened in terms of finding your way and navigating the maze?

V: Occupational health [service organised by employer, not NHS] … It was the first time I felt that the world wasn't falling apart … it was before I'd got my proper diagnosis and so it was in between being told that my life was over, and my getting my actual diagnosis from the consultant. I was still bobbling along trying to do full-time work. I felt like I couldn't tell anybody that I was ill because it wasn't official yet. It got to the point I couldn't cope anymore, so I made an appointment with the occupational health department here. I went in and I felt like such a fraud and he just sat me down, he said, we're going to wrap you in cotton wool. It doesn't matter about your diagnosis; until we know otherwise, this is what you've got and we need to take care of you and make sure that we're doing everything we can to support you. It was just amazing, it was the first time anybody had, outside of my family, really been caring about it.

Have there been any other examples of people being caring, outside your family?

V: The psychologist was very good and caring. Eventually I left my GP when he told me that I needed to stop trying to get better because this is obviously what God wants for me. Yeah. So I walked out of that appointment, round the corner, into the next doctor's down the street and said, can I sign up with you, please. The first doctor I saw at the new place, he was a locum and he came across to me as really caring. The difference is that he started off asking: how is this impacting your life? None of the other doctors had asked about that. They'd not asked how I was managing at home, at work or anything like that. He said, I don't know all that much about CFS: you tell me what your experience is. It was just really nice to have someone start from that perspective. Unfortunately that doctor's surgery is closed and I'm now back with my original doctors because they'd put us all back in there. So I'm back with the ones who don't actually want me to get better.

So, given the fact that there isn't a cure for CFS, what is important to you about how the system supports you, or signposts?

V: You start looking online; you look at what's available elsewhere. I was reading about a book that's written by several people who work at XXX; they have a CFS clinic there and they've got all these leaflets and they put them into a book and I just bought this book and I thought, oh, they've got lots of really useful leaflets. You think: why is that not more widespread? Why is the good practice … I know there's a famous clinic for CFS in London … but if you're not in one of those areas then you seem to have absolutely no access to it.

I've tried to get involved in research studies because mum's got Parkinson's and she's found that being involved in the research studies is actually the best way to get … I keep looking online and I haven't found anything. Maybe I'm just looking in the wrong place again; I don't know where to look, really. My doctors have a thing on the website saying, we're a research active practice, our patients are involved … but … there's no “click here” to find out more or sign up or whatever. So I went into the practice and I said, I'd like to put my name down for anything on the CFS front if there's anything going. I remember the receptionist looking at me, just like I'm coming from Mars. Nobody had ever asked this before … I said, it's on your website. So she went off and got the manager and they came back and said, yes, we've put your name on a list and I thought: is that a list of one …?

After the first meeting with the doctor, I wasn't in a fit state really to ask questions, so I went back and I talked to another doctor and I said, I'd like some more information. He said, oh well, I don't really know, but there's plenty of information online, you can just Google it. I thought, really, okay. So I went home and I Googled it and that was a horrendous experience. I know a lot about it now, I know which sites are better ones, more optimistic ones, for me to look at, but there's a lot of militantism on the Internet with CFS.

I remember one of the first things I read was somebody saying, if you recover from CFS then you never had it in the first place. I thought, well, okay then, I don't want CFS, I'll have whatever the mystery thing is you can recover from, that will be fine. I think that was to do with the ME Society. There's a forum I go on called the Patient Forum, which is basically just other patients … I remember I put a link to some scientific journal and that got held up for three days while obviously somebody checked that it was bona fide.

What difference would really good signposting, navigating and support have made, or would make in the future?

V: I think the most important bits could have been at the beginning, because you really don't know what's going on. Also for a lot of people that's when your symptoms are at their worst because you're not managing them at all. So your brain doesn't work, you really need neon flashing signposting. The occupational health guy that I saw gave me the booklet with official NHS NICE guidelines. It was a really clear guide: okay, we don't know what causes it, but these are the symptoms, this is what you need to do, there's boom and bust cycles, this is your graded exercise therapy. It was about five pages, but just having that … that's what the doctor should have given me, instead of telling me to Google it …

How come you've ended up going to see an osteopath?

V: My uncle sent me a link to a Sky News article … you get a lot of advice from a lot of quarters and most of it's really … well, if you did it all, then you wouldn't have any energy for anything else, or any money because a lot of it involves buying nutri blenders and all sorts. It was a link to an article that was posted in 2017 and there did seem to be something maybe to it. It was a small study, the usual limitations, but I couldn't find anything directly naysaying it yet. When I looked into it further, he was talking and explaining some of the symptoms that were on my original list that no one ever looked at. I thought, oh, well, if they're on his list too, maybe it's worth a punt …

References

Demain, S. , A.C. Gonçalves , C. Areia , R. Oliveira , A.J. Marcos , A. Marques , R. Parmar and K. Hunt (2015) “Living with, managing and minimising treatment burden in long term conditions: a systematic review of qualitative research”, PLoS One 10 (5): e0125457.

Maningding, E. , M. Dall’Era , L. Turpin , L. Murphy and J. Yazdany (2019) “Racial/ethnic differences in prevalence of and time to onset of SLE manifestations: the California Lupus Surveillance Project (CLSP)”, Arthritis Care and Research 7 (5): 622–629.

King's Fund (2013) “Long-term conditions and multi-morbidity”, Time to Think Differently Project, www.kingsfund.org.uk/projects/time-think-differently/trends-disease-and-disability-long-term-conditions-multi-morbidity (accessed 5 January 2021).

NHS (2014) Five Year Forward View, www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf (accessed 3 January 2021).

Organising care around patients

Stories from the frontline of the NHS

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