Adult acute care and cancer
in Organising care around patients

The chapter is prefaced by a brief summary of the policy background. Urgent and emergency care is, by its very nature, different from planned care. The diagnosis is not always easy to nail down, the patient might be in considerable pain, distress or shock, and the trajectory of care can be uncertain. Cancer care raises issues of its own. Emergency, planned and cancer care all have waiting time targets in the NHS in England. These were successful in significantly reducing long waits. However, the system was already coming under increasing pressure before the COVID-19 pandemic, with performance deteriorating and an inexorable rise in waiting times. Coordination of care with GPs and other primary care services remains an issue. This chapter contains four stories in which hospital was a significant site for care. The stories cover planned care, emergency care and a story about cancer. The first story is about what happened to Jill following an accident involving her knee, including her follow-up care. The second is about a planned operation to remove Andrea’s gallbladder. The third concerns Lucy’s experience when she was hospitalised with sepsis. The final story concerns Shona’s journey to recovery from breast cancer, and what helped along the way. We invite readers to assess how these narratives compare with the four characteristics of patient-centred care 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

Urgent and emergency care (by which we mean a procedure which needs to be done immediately) is, by its very nature, different from planned care. The diagnosis is not always easy to nail down: the patient might be in considerable pain, distress or shock, and the trajectory of care can be uncertain. Cancer care raises issues (and a set of policies) of its own. One of the most high-profile targets in the NHS, introduced in 2000, is the four-hour waiting time target for patients to be seen, treated, transferred or discharged in A&E departments. The target resulted, in the early years, in huge drops in the number of long waits. Since 2011, performance against this target has steadily deteriorated across all hospitals in England, with some patients waiting over twelve hours on trolleys and in corridors (Nuffield Trust, 2020). New proposals are designed to measure the average waiting time for patients in A&E departments, as a less blunt and more realistic assessment of timely care.

Demand on the ambulance service and on emergency hospital beds has steadily increased in recent years. This trend correlates with the increase in the numbers of frail older people as well as growth in the general population. However, it is likely that the increase in demand is affected by changes in the funding and organisation of services as well as by numbers of patients. Policies to avoid acute hospital admissions, with schemes to provide “care closer to home”, helplines such as NHS 111 and the provision of urgent treatment centres have had variable impacts. The emergency care system continues to be under strain, especially during winter, and increasingly (and even before COVID-19) all year round.

Planned care is also subject to targets in the English NHS. Patients should not wait longer than eighteen weeks for non-urgent, consultant-led treatments. As with emergency care, the NHS has increasingly struggled to meet this target in recent years, with many people enduring delays in getting the operation, procedure or investigation done. Some specialties remain more problematic in relation to timely access to treatment than others. The NHS Long Term Plan (NHS, 2019) promised additional capacity for a higher volume of planned acute care, including an increased number of hospital beds and staffing to reduce the lengthening waiting lists for diagnostics and operations. Meanwhile, the response of the NHS to the COVID-19 pandemic was to postpone vast swathes of planned care and it remains to be seen whether and to what extent commitments in the Long Term Plan will be honoured. More generally the disruptive effects of COVID-19 have prompted thinking about the need to “reset” the organisation of services, with potentially much longer-term implications, as illustrated by the position statement made by the Royal College of Emergency Medicine (2020).

Cancer services have benefitted from the introduction of cancer-specific targets to reduce waiting times for diagnosis and treatment. More people are living for longer after a cancer diagnosis. This success brings new challenges for the provision of appropriate care and support from the local NHS and voluntary sector. Cancer is both an urgent health problem, with significant psychological impacts, and also an illness with longer-term risks and implications for those who have had a cancer diagnosis, and these have to be monitored carefully. As with other types of acute hospital care, cancer services have increasingly struggled to meet targets in recent years, and were to a considerable extent put on hold during the height of the COVID-19 pandemic.

Acute hospital care can be complex; for example, services are often provided by clinical staff from different professions and employed by different organisations, as they hand patients over along the care pathway, and this is illustrated in some of the accounts contained in this chapter. Hospitals themselves are large and complex organisations. Policymakers and professionals have devoted much attention in recent years to how acute care can be delivered more safely, to a higher quality and in more coordinated, patient-centred ways. The Royal College of Physicians’ Future Hospital Programme (Royal College of Physicians, 2017) is a case in point, as are the various responses that followed the investigations of failures at the Mid Staffordshire NHS Foundation Trust and in other trusts (Department of Health, 2013).

As with other aspects of healthcare, there is evidence of considerable inequalities in the delivery of acute care. For example, the charity Mencap has long drawn attention to poor care received by people with learning disabilities and believes that about 1,200 people could be dying avoidably every year as a result. Their document Treat Me Well (Mencap, 2017) reviews the evidence and policy developments, and the campaigning that Mencap has led over several years, since its seminal report Death by Indifference (Mencap, 2007).

The stories

In Chapter 1 (Section 2, p. 4) we offer an understanding 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

Against these criteria, the stories below can be seen as presenting very much a mixed picture.

This chapter contains four stories in which hospital was a significant site for care. The stories cover planned care, emergency care and a story about cancer. The first story is about what happened to Jill following an accident involving her knee, including her follow-up care. This is the longest story in the chapter. The second is about a planned operation to remove Andrea's gallbladder. The third concerns Lucy's experience when she was hospitalised with sepsis. The final story concerns Shona's journey to recovery from breast cancer, and what helped along the way. In addition, it is worth cross-referring to Justin and Lucinda's story about Jim in Chapter 3, which spans several decades and includes episodes of acute adult care. As with other chapters, we have posed questions at the end arising from these stories, to simulate your thinking and reflection.

Story 12: Jill

While getting ready to go out on a Saturday evening in November, Jill had an accident at home in the bathroom, and badly injured her knee (dislocation of joint and complete tear of ligaments). She waited on the floor of her bathroom for two hours for an ambulance to take her to hospital. She describes how bewildering and lost it can feel to be waiting in an emergency department at night in severe pain. She had an X-ray and an MRI scan and two separate procedures involving a general anaesthetic, to reset the knee and then to repair the ligaments, and went home five days later. Jill experienced very different levels of care and attention in the various wards and departments of the hospital. Her post-operative care was chaotic – the GP surgery explained that they couldn't offer wound care, despite Jill having been steered to them by the hospital, and the hospital did not make contact to arrange follow-up appointments with the surgeon and with the physiotherapist as promised. Jill herself organised all her follow-up care. Despite the potentially catastrophic nature of the injury, following a strict physiotherapy regime, Jill eventually regained 98 per cent function in her damaged knee.

Jill: Well, what happened was I was getting ready to go out for the evening and I stepped into the shower to just get a bottle of shampoo. I was intending to have a bath and as I stepped out of the shower, one foot was on the bath mat and the other foot was in the shower and there was a terrible pain in my knee and I fell. I fell on the floor and the angle of the bottom half of my leg was not right. It was absolutely agonising pain so I screamed and so my husband came tearing up the stairs and I had fallen on the floor slightly behind the bathroom door and I said, phone an ambulance, I think I might have broken my leg. Basically, the bath mat slid away and, as it turned out, I had dislocated my left knee.

So I was lying on the floor, not wearing anything. It was November so it wasn't particularly warm and I live in a rambling Victorian house, but since there was hot water under the floor it wasn't particularly cold. My husband phoned an ambulance. I could hear him phoning. To start with he found it quite difficult to get in the room because I'd fallen just behind the door but then he squeezed in and put a dressing gown over the top of me. I rather assumed that an ambulance would be there fairly quickly and although it was absolute agony – I was crying in pain – that they would give me morphine and it would be all right, but it was a Saturday evening and I fell at 18:20. I was not top priority for the ambulance so it took two hours for an ambulance to get to me.

For all of that time I was lying on the floor and I didn't dare eat or drink anything and I didn't dare take painkillers because I thought at any moment an ambulance would be there. We called and they said, there are other people that are a higher priority, you know. Are you bleeding? I was but not very much. I can see, if an older person's fallen and is having a heart attack, they're going to be higher priority but it was absolute agony. It was excruciating pain and I was there until, I don't know, about 20:30.

God, how awful.

J: It really was just terrible pain … we phoned a couple of times and they said, yes, you are on the list, you know, if it gets any worse, phone us back. I was literally screaming and crying in pain. Then eventually the ambulance came and the crew were brilliant and they did give me morphine but it didn't stop it hurting. It was still excruciating. They said, she's going to be at least in overnight, will you pack a bag? And they wrapped me up in my dressing gown and they said, can you walk? I just couldn't. I couldn't. I just couldn't stand the pain. So, yes, they put me on this chair thing that they bumped down the stairs which was excruciating and then put me in an ambulance and took me to hospital. My husband came in the car and was with me and I had had morphine but it just didn't touch the pain. A&E was very busy and I was on a trolley for quite a long time and eventually then I was put in a room.

The pain was still excruciating but A&E was rammed. The woman from the ambulance crew stayed quite a while with me because I wasn't going anywhere. I was just in the corridor. My husband kept going to the nurses and asking could I have any more pain relief and they gave me paracetamol or something and at some point they topped up the morphine but they didn't actually do anything until 02:30 in the morning. By which time A&E had cleared out a bit with people in handcuffs and the police. There was quite a lot of that going on.

At some point they X-rayed it I think. I was waiting quite a long time at X-ray and then they told me that I had dislocated it and that it wouldn't stop hurting until they essentially realigned it but they couldn't do that yet. They would need to give me a general anaesthetic to do that. I kept saying but the pain is awful and they kept saying, yes, we know the pain is awful but we can't really do anything until we realign it. So at 02:30 my husband eventually went home because I said, look, they're going to give me a general anaesthetic, there isn't any point in you being here, go home. He wouldn't go before that because I was just in such dreadful pain. He didn't want to leave me. Although they'd given me more morphine it hadn't really helped. Well, it had helped a little. I wasn't actually screaming. I was just sobbing quietly.

Maybe I should have made more of a fuss, I don't know. When they reset it, I woke up and my leg was in almost a box of plaster with some kind of elastic gauze over the top, that held it there, but I was lying down with three sides of plaster round it. They said, yes, they'd reset it and they gave me more morphine and eventually they took me up to a ward to wait for a bed to be available for me. Then I tried to phone my mum and I tried to phone my husband because I had my mobile with me. Then they offered me, I don't know, tea and toast or something and because I've lived here twenty-five years now and I've taught a lot of children, I know a lot of people and one of the occupational therapists who came through the ward was someone I knew. I taught her children. There was an incident with the child which meant that I knew the mum very well, so she said, oh, would you like a cup of tea? She came and sat with me and chatted. That was really nice because everyone was so busy, you know, nobody had a chance to talk or to tell you what was going on or where you were going to end up.

I tried to phone my mum and there was a cleaner hoovering so she couldn't hear me, so then she tried to phone me back and I couldn't hear her because the hoover was going. So that was really quite difficult because I hadn't told Mum. I didn't want to worry her, but then eventually I managed to talk to her and then that morning, I was taken up to a ward which dealt with knees and hips, basically, mostly elective [planned] surgery.

They were not as busy as either the ward I was on temporarily that morning or A&E because in the run-up to Christmas, I believe that people hadn't elected to have their surgery. So they were less busy than other places might be. Also, because I'd had a stomach upset that day before I fell, they didn't want to put me with everybody else. They wanted to put me in a room by myself in case my stomach upset went elsewhere, I think. I had this lovely room with its own en-suite with a beautiful view and the staff were absolutely lovely and they did have time because they weren't busy, so after that it was good.

So that would have been on the Sunday I went to the ward, and I think to start with there was the issue of using the loo and the bed pan and could I get up? No, I couldn't. Oh, and I had to have another imaging thing and it wasn't an X-ray because the X-ray was, I'm trying to remember, good for bones but not very good for soft tissue.

So at some point on the Monday I went downstairs and had this scan and then they looked at it and said that they were considering the options on what to do about the knee. Then late on Monday evening a nice doctor, not the consultant but one of his team, came to see me and said, right, then, Mrs X … You know, there's no point me saying Ms because they just don't deal with Ms, really. I've always been Ms X … but, hey, the national health doesn't get that.

So anyway, we will need to operate on your knee. You've been told you're having an operation in the morning? No, nobody's told me that. Oh, haven't they? Oh, well, you are having an operation in the morning. Okay, why am I having an operation in the morning? Well, you have torn all the ligaments in your knee and you need ligaments in your knee for it to work, so basically we've got to create ligaments so that your knee works again. What happened in the early hours of Sunday morning was just putting the knee joint in place but we need to put ligaments in place otherwise it won't work. I'm afraid you'll probably have a limp. Now, I didn't think that was a big problem, really. I'd had, what I saw as an absolutely excruciating fall. I'd had breast cancer six years ago.

I was delighted to be cancer-free. Having a limp seemed small beer. It wasn't like it was going to interfere with my international footballing career. I wondered why he was worried about it, really, but he seemed to be terribly worried that I might have a limp. I mean, at 54, how big a deal is that, really? Anyway, so the next day I did have the surgery. The surgeon was very pleased with himself. Everyone told me, all the nurses told me he was a very, very good surgeon. Yes, he had been to see me before the operation and told me that he was going to create ligaments. He was, kind of, like Jeff Goldblum, if some kind of person like that exists, and he was charming and smooth and very confident in his own abilities.

Did that annoy you?

J: No, it didn't. I think if you're going to have surgery, it's quite a good idea to have someone who seems to know what they're doing. So, no, it didn't annoy me. I thought he was handsome and charming, which is never a bad thing. Not necessarily someone I would have wanted to go out with at the age of 20, but the sort of person that you might like to do your surgery at the age of 54.

I did mention to the anaesthetist that he was like Jeff Goldblum and he said, oh, for God's sake, don't tell him that, he's arrogant enough already. So anyway, the surgery was done and when I woke up, I was back in the ward and I didn't have the plaster on anymore. I had some other contraption on my leg and it was all bandaged up and, yes, I was getting up and using the loo and it was awkward. I had a walking frame to do that and the nurses were terribly helpful, you know. They were really good. Yes, so it was fine and the physiotherapists were brilliant but I had to keep taking the morphine because if the pain broke through it was still considerable.

The morphine made me sick. The physiotherapists talked about me going home fairly quickly. They wouldn't let me go home until I had mastered the stairs with crutches, well, with a crutch, because there's an order you have to do the stairs in terms of good foot, walking aid, bad foot, up and down the stairs. Until I had done that, they wouldn't let me go. I thought I wanted to go home and they talked about me going home on Thursday, which was quite quick, really, but on Thursday I became less confident about that because I felt so sick. Every time I got up to do the physiotherapist's bidding I felt terribly sick and had to come and sit down again. Late in the day, one of the nurses said, I'm not sure you should go today, but then we'd made arrangements and I thought, oh, I think I'd better go for it, really. So I did go home on Thursday. At the advice of the physiotherapists some friends had moved a bed downstairs for me because we have a loo downstairs, so that I didn't have to climb the stairs for bed because I was just exhausted by going to the toilet.

That wasn't very good, really, because what we hadn't considered was that a hospital bed is really high and this particular bed that was brought down was quite low and had a memory foam mattress so was hell on earth to get out of because it was so low. By that time I had no bandage on my leg but I had this contraption, a splint thing with Velcro on and it had a knee joint and to start with I was not to move my leg more than 10 degrees.

I had to keep it very stiff. There were staples in and stitches in, so, yes, that was really difficult so I only spent two nights in that bed because I didn't like it. I didn't like being away from my husband and he didn't like me being away from him because he felt if I needed anything he couldn't hear me and our bed is much higher, so I just had to do the stairs. Then he wasn't happy going to work and leaving me with the stairs to do, so, yes, we had to make arrangements, really.

The biggest NHS problem I had after that was after so many days I needed to have the staples and stitches out and they said the surgery would do that but the surgery couldn't do that. They didn't have the capacity to do it. As it happened, one of the nurses was off because her father had died so they couldn't do it and they said, go to the walk-in centre.

Now, as it happens, our walk-in centre is closing next month so I don't know what people will do then, but that's another matter. I felt the walk-in centre was not ideal: I can't walk, or very few steps. So what I did was I phoned a friend who, oddly enough, I had texted when I was lying on the floor, because she's a district nurse, to ask her if there was anything I could do to stop the excruciating pain given that I'd been waiting an hour and a half for an ambulance. Then she messaged me when she got the text which was later on. She'd come to see me in hospital and had said, you know, if you have any trouble getting the stitches out, let me know and I'll come and do it for you.

So she did that for me. I'm very reluctant to march in and say, hello, I am the chair of the patient participation group [PPG] and you really should get my stitches out. That would seem terribly arrogant and somebody was off sick for a perfectly good reason, but I was very disappointed that the surgery said they couldn't take my stitches out.

I was lucky that I had someone who could do it for me at home. What about all the people who aren't lucky? I thought that was a bit of a fail, really.

Yes, so then I did have to nag because I was supposed to have a follow-up appointment and nothing happened. I was supposed to have physiotherapy, nothing happened. So I phoned the surgeon's secretary and she said, oh, you should have had it by now. Can you come in this afternoon? There was then a bit of a panic. Can you come now? Well, obviously I couldn't drive. I did go and then there was the same thing with the physiotherapy. That didn't materialise. I was supposed to have physiotherapy and, again, I phoned the surgeon's secretary and said, you know you sorted the follow-up appointment, well, the physiotherapy hasn't happened either. She said, oh, no, I'm so sorry it's gone wrong again and then I got a call the next morning to say, can you come in now for physiotherapy?

Very last minute and I said, well, no, I'm going to a funeral this morning. I can't, no. Oh, well, you'll have to wait two weeks then. Well, I should have had physiotherapy by then. So that was hopeless, but when I actually did get to see the physiotherapist she was, you know, as they usually are, physio-terrorists, and was very fierce.

Physio-terrorist!

J: Well, they cause you pain, don't they? Have you never had physiotherapy?

Yes, I have and it can be quite painful.

J: They cause you pain, don't they? No gain without pain. You have to and I honestly did what I was told though it bloody hurt. She told me I couldn't possibly go to Venice for Christmas. So I guess it couldn't have been that long because I saw her just before Christmas, I think. I went anyway. She said you'll never get travel insurance and I phoned the travel insurance and they said, yes, it's fine. To be honest, it wasn't ideal going to Venice with two crutches but I had arranged things so that it was okay and it was actually easier being in an apartment in Venice which was all on one floor than being in my house at home. The physiotherapy was very good. I did it very earnestly and as a result, when I had my annual check in November, I've got 98 per cent of the movement back in my leg, which they didn't expect me to get.

That's really good. Do you have a limp?

J: No. Well, I do if I get very tired. The only thing I find difficult … Well, there are two things, really. One is if I go down a steep hill, I feel it afterwards in that knee. So it looks ridiculous when I do it but I live at the top of a very steep hill, I go down sideways which looks ridiculous but means I don't hurt afterwards. The other thing is getting up off the floor because I can't kneel on it. Well, I can if it's the bed but other than that I can't. In that case, I tend do a, sort of, downward-facing dog, if you know what I mean, to get up and that works. So I can get up and down. It looks awkward but it works. Other than that I don't run because the surgeon told me I mustn't.

The only running I ever do is in aqua-aerobics. I can do a forty-five-minute aqua-aerobics class without a problem. I try to avoid the jumping bits because that doesn't feel good. Sometimes it aches a bit afterwards, but it's all right, actually.

I mean I think lessons learned might be, you know, should it really take more than two hours to get an ambulance?

It would be quite nice to tell the patient what you're going to do to them before you do to them.

It would be nice if the appointment system worked so if the ward are going to organise the follow-up and the physiotherapy it'd be good if they actually did. Yes, and it would be good if the surgery had the capacity to do the things that the hospital say they're going to do. I've since found, being on the PPG, that wound dressing is an absolute nightmare for surgeries. Hospitals assume they have the capacity and they don't necessarily. So I think that's quite a big issue that runs across a lot of areas.

It does sound as though all your interactions with health professionals were pretty good but a lot of the organisation and admin and communication was terrible.

J: Yes, absolutely. The nurses I had in hospital were darlings, absolutely brilliant, even the student nurses were really good. In fact, I've stayed in contact with one of them. Fantastic, they were absolutely brilliant, the staff in the hospital – apart from whoever was supposed to organise the appointments afterwards. The physiotherapists were great, were very sympathetic but pushed you. Yes, I mean the fact of the matter is – they didn't tell me this until afterwards – I had a catastrophic injury which could have been so much worse and I have 98 per cent of my movement back. Now, that is a result.

Yes.

J: To some extent, is it only because I knew the system well enough to know who to phone to get action fairly quickly?

Yes, I was going to say, and you said it yourself, that there were parts of this experience where it really helped to know the system and other people would not have had that advantage.

J: Absolutely, I mean, at some point, I was a drugs rep for [a large pharmaceutical company], so I know that phoning the secretary of the person is the thing to do, to get your way through the system.

Yes, that's interesting. The other thing, I mean, was your pain managed properly or was it inevitable that you were going to be in extreme pain that they couldn't do much about?

J: Well, that's an interesting case. I don't know, honestly. When I was in A&E the pain was excruciating. Talking to my friend who was the district nurse who came and removed my staples, she said that she had concerns that since they've reorganised the ambulance service, the people prioritising didn't necessarily have the medical knowledge to prioritise and that some injuries were left because they weren't seen as a priority but could have been disastrous if they were left too long. So, for example, I was a bit frightened by a couple of newspaper reports I read after that, where I saw that somebody with similar injuries had lost their leg because they had waited too long and they had got compartment syndrome and therefore lost the leg.

I was very fortunate. One of the things they seemed to be concerned about was, did I have blood flow to the bottom of my leg because I'd severed the ligaments but I don't think I'd damaged the blood vessel. If I had, I think things might have been rather different.

I don't have enough medical knowledge to know that but because they were concerned about the blood flow, I suspect that might have been an issue but they didn't know that before they'd turned up in the ambulance.

No, and that wasn't a question they were asking on the phone, then, was it, about whether you could feel your toes?

J: No, well, they asked if I was bleeding and I had just hit my calf on the lip of the shower as I went down so it wasn't bad at all. It wasn't even bad enough to need a plaster, really. The crucial point was the dislocation: I was lying on my side on the floor on the good leg with the bad leg on top, well, slightly at an angle, partially on top.

Yes, for two hours. Dreadful.

J: It was. It was something I would never want to repeat. It was excruciating pain. I have never had pain like it, mind you, I had two caesareans, but it was excruciating. The pain was managed in hospital. They gave me, I suppose it was Oramorph which I liked very much. It tasted like Bakewell tarts and you could feel it kicking in. Your head started floating. So the pain went, of course it caused other things, made you feel sick, terrible constipation but other than that … So once I got out of hospital I didn't take it anymore. I took co-codamol. They gave me a packet of morphine and I never took it because I didn't want to feel sick and be constipated, really.

Is there anything else about that experience that you think is worth sharing?

J: The follow-up appointments: first one was with the surgeon and he was pleased with the progress. The second two were with part of his team and they were all very efficient, they were all very charming and praised my extensive efforts at physiotherapy so I felt like I'd done something good. Everyone likes to be praised so, yes, they did well. I didn't have to wait long for my appointments.

Story 13: Andrea

Andrea had an operation to remove her gallbladder. She went to her doctor's surgery with symptoms of pain and vomiting; the doctor provisionally diagnosed gallstones (which proved correct) and sent her for a scan. The GP promptly called her back into the surgery after the scan result to arrange a hospital outpatient appointment, explaining that an operation would be needed. She explains how well coordinated the care was, including the flow of appointments and follow-ups at the GP surgery, the local NHS hospital which carried out the scan, the health centre where the hospital consultant ran an outpatient clinic, and the private hospital where the operation took place. She was surprised to find herself as an NHS patient being treated in a private hospital. Andrea did not know that her GP surgery has an Outstanding rating with the Care Quality Commission.

So, what happened at the beginning? I understand you had a gallbladder operation. How did it first manifest itself that you had a problem? And particularly what happened when you first went to the GP?

Andrea: A serious amount of pain in the night, which made me feel … well made me sick … went to the GP. They recognised straightaway what it was, got me a scan booked.

So, they got the right diagnosis.

A: They knew the tell-tale signs for what they thought it was.

How did you feel about that, that the GP got to the diagnosis so quickly?

A: Pleased. Very, very pleased, because you never just know what it could be. I got the scan appointment within three weeks, which was before Christmas. Went for the scan, they said that, yes, that I had got gallstones, but I would hear from my GP. Between Christmas and the New Year, I got a telephone call off my GP to say could I make an appointment to go down and see them. Which I did do, I saw my GP before New Year. I went into the surgery, and the doctor brought it all up on the computer. They told me obviously I needed to have an operation, and they booked me an appointment there and then with the consultant, to see him middle to end of January. And they actually booked me an appointment online at the health centre in a local town, when the consultant was there.

And presumably at a date and a time that was also convenient for you?

A: They asked me what day and what time would be convenient for me.

So, how did you feel about how the GP organised the care for you? Because he or she basically had to refer you and then got the results and then referred you on to the consultant.

A: Really, really pleased. They were just on the ball. There was no, oh, it'll be a waiting list. You put your trust in them and they just did it for you.

So, which hospital did you go to for your operation?

A: XXX, which is a private hospital. Which I was really quite shocked about, but as long as it got my problem sorted, I wasn't bothered where I went.

So, tell me why you were shocked about that?

A: Because I just thought I'd be going into a normal NHS hospital. Not a privately run hospital.

Was it explained why you were referred there?

A: No, it wasn't actually, no.

It wasn't explained by the GP?

A: No.

Was it explained by the doctor at the hospital or anyone else?

A: No. They just said, there you go, you've got a place at the private hospital.

So, you went for an outpatient appointment there? And what happened then?

A: I went and saw the consultant at the health centre in the local town, because the consultant works at the local NHS hospital and he works at the private hospital as well.

So, you didn't have to go to the private hospital for the outpatient appointment?

A: No. The only time I had to go there was to have a swab done for MRSA. That was the only time I had to go, I had to have that done about ten days before I went in for my operation. But no, they made the appointment for me at the local health centre to see the consultant. I saw him, he was brilliant, explained absolutely everything that was going to happen. He gave you confidence that he knew everything was going to go according to plan.

Okay, so you had the operation and were you discharged on the same day?

A: Yes.

And then, how was the care after the operation organised for you? Or did you not need any care?

A: I was told I couldn't lift anything, or anything like that, and then they made me an appointment there and then at the hospital to see the consultant after six weeks.

And did you have to go back to the private hospital for that, or did you go to the local health centre?

A: I had to go to the health centre in the local town, where they made the appointment.

And is that convenient for you where you live?

A: Yes. It's not too bad.

Is it more convenient than the private hospital?

A:Yes, definitely.

And did you have any other aftercare? Did the district nurse need to come or anything like that?

A: No, but I did go down to my local surgery because I had a slight problem with one of the wounds, it wasn't healing correctly. So, I went and saw the nurses at my GP's, and they sorted it out for me. And then they told me to go down again and see them again to make sure that everything was healing correctly.

And how easy was it to see the nurse?

A: Yeah, fine. Just rang up and I think I had to wait a day to see the practice nurse.

So, all in all, in terms of how the care was organised, what do you say might be the learning for the NHS?

A: It was just so quick; they knew exactly what to do … when to do it … and it just flowed.

Did that surprise you?

A: Yeah.

Tell me why.

A: Because I thought I was going to have to wait months and months and months even to see a consultant. I didn't think it was going to flow as easily as what it did. With what I've heard with other people, having to wait months and months and months. I was really, really shocked.

Story 14: Lucy

Lucy lives with a serious long-term mental illness. Her experiences of mental health services are described in Chapter 6. She is a consultant psychiatrist. Here she describes, after an initial visit to A&E resulted in the wrong diagnosis because of her chronic kidney disease, what happened when she got hospitalised with sepsis. First she was taken to the medical assessment ward, and then on to a ward for older people over 75. After that she ended up on a post-operative gynaecology ward. There was a huge difference in how well Lucy felt cared for in this last ward. She was upset about how badly managed the ward for older people was and it had a negative effect on both her physical health and her mental well-being.

Lucy: When I retired, I was diagnosed with chronic kidney disease … which turns out that I've had all my life, but it's just been getting gradually worse. I've always had problems with persistent urinary tract infections [UTIs] and I got a persistent UTI and bleeding and I was investigated and I was found to have polycystic kidney disease. And my renal function is okay, but it's very slowly deteriorating, because it's come to notice late, whereas for some people, it comes to notice when they're in their 20s and 30s. I don't know if I'll ever need to go on dialysis, but it's a possibility.

So I'm under the care of the regional unit in XXX and one of the problems is that XXX hospital can't see YYY hospital's data … they can only see the reports; they can't see the actual images, because one of them is an academic organisation … they can't see each other's ultrasounds, and it's ridiculous, and this has gone on … Last year, I had some bleeding and I saw my GP, and the XXX [hospital] thought it might be a burst cyst. And then I went for investigations. And five days after I had the cystoscopy done, I developed a terrible pain and vomiting. And we went up to A&E on the Monday morning, and it was a bank holiday, so I went through all of the NHS Direct and I knew they were going to say, go to A&E, so I did.

And they thought it might be a burst cyst again, because I didn't have a high temperature, but sent me home with some codeine, and I was better for a few hours, and then on the next day, I was lying on the sofa and I just got worse all day, until about eight o’clock in the evening, when I really felt like I was dying. They took one look at me at reception and said, you can go straight through, because I was actually vomiting at reception, so they didn't like that. And the team in A&E were absolutely great, they actually diagnosed sepsis straightaway.

I had a high temperature, my blood pressure was falling, my urine electrolytes, when they got them back, were all over the place, my liver function tests were starting to go off, and the registrar was absolutely great. He just said, it's sepsis. They stuck a needle in both arms and catheterised me, and that was that. But then I went to the medical assessment unit and I lay on a trolley for about an hour, but I did get a bed, and then I saw a couple of people there who took my history again and they kept putting lots of fluids into me and they started me on antibiotics. But then the next step was awful. The only bed they could find was on an older person's ward, for over 75s, and they said they had a bed, but when we went up there, the person hadn't left their bed and I was left sitting in a chair with no headrest for two hours, and I was acutely ill, and [my partner] was with me and I had my head sort of just leaning against him.

And the ward was just awful. It was dirty and the auxiliary staff were a bit out of control … I've been an auxiliary nurse, as a student, so I know they were running the place. And they were not very nice people and they made a mistake with my medication one night and they gave me oral instead of intravenous, and I knew they had. And I was a bit out of it for the first couple of days, and they would come and get you out of bed in the morning and make you sit next to the bed until they remade the bed, which was like two hours, and I was really ill and it was horrible. Anyway, after a week, they needed that bed for someone who was more ill, so they moved me to a gynae ward, post-surgical, and that was completely different. That was run and organised like a ward when I was a medical student. It had a sister who came round to check if everything was all right, and they came round in the morning and they said, would you like us to refresh your bed, and they did, and I was able to get out and get straight back in. People came and did everything at the right time.

I'd had these cannulas in for days and they were filthy, and she took them out, and they should have been changed after forty-eight hours, but I was too ill to argue. And so I had good care there, and I thought, it's really interesting, this is a surgical ward, and I know surgeons are more powerful than medics … There were some very sick people there, who were also old. The woman opposite me had to go back to theatre because she was really going downhill, and I thought, it's about the power of surgeons, this is.

Do you think that's what it was?

L: I think surgeons are much better at getting what they want in hospitals than medics are. I never found out in the older persons ward which team was looking after me. Nobody ever said, we are looking after you. There was a succession of doctors who never introduced themselves. No one said, hello, my name is … except for the nurse on the acute medical unit, and then they did when I went to the other ward. It was chaos and it was poorly managed and no one seemed to be in charge of the place. The beds on the older person's ward were horrible, they were hard. Once I got to the other ward, it was possible to sleep in them without having to put a pillow under my hip.

What about the nurses, though? Because it's not all about the doctors, is it?

L: I just felt they weren't managed. I think it was a management failure. When I spoke to the chief executive, he emailed back to say that they were not short-staffed on that ward; he said it was almost certainly a management issue. I don't think they were running the place properly.

They've apparently got a home IV service, but it's so underfunded that they couldn't get me onto it, so I spent an extra four or five days in hospital. Having had all of those investigations at the XXX the week before I went in there, I had to have them all again because they couldn't see the ones that had been done at there. So I had ultrasound again. I'd even had an MRI scan at the XXX but that couldn't be seen. But all of that had to be repeated, even though all the investigations had been done, you know, a week before.

So how long were you in altogether? Nearly two weeks?

L: Two weeks.

And how did that affect your mental health? Did it have an effect on your mental health?

L: Well, I got very down. Well, I was quite confused for a couple of days. And I thought there was an underground station in the ward at one point.

An underground station?

L: Yeah, I could hear trains and things. It was all very weird. And then I got a bit down because I was in persistent pain and they kept just wanting to give me paracetamol and that wasn't working. And there was a point where I felt quite down and I thought … I've had patients who have thrown themselves out of windows in hospital wards before now. I thought, I can understand how they do it, because if people are really being vile to you, you just reach a point where you think, I'll go out the window. But once I got over to the other ward, I started to cheer up a bit. And I stopped one of my antidepressants because I couldn't cope with swallowing it, and the nurses kept trying to give it to me, and they said, oh, we don't want you to go funny! So I actually rang up my consultant. I emailed him, because I could email by then, and he rang me. He was at the Isle of Wight Festival; I think he was into heavy metal in his youth, or something … He said, are you sure you want to stop them? And I said, yes, and he said, all right then.

So I didn't have any withdrawal symptoms, or if I did, I couldn't tell because I'd got so much else going on. But my blood pressure just wouldn't come up and I was worried that that was making it worse. They kept coming and wanting to take my blood pressure very frequently because it was so low …

How do you think staff treat you differently when you have a physical illness, when they know you have a diagnosis of a mental illness as well?

L: I think they treat you with kid gloves, and I know, from talking to people whom I've met and whom I've treated, that very often they don't want anything to do with them because they've got a mental illness … They don't want to have to deal with the difficulties. They don't want to have to have the negotiation that you sometimes have to have. So I can think of my patients, you know … I had a patient that had an abnormal cervical smear and had bipolar disorder, and just trying to get her to the clinic was really hard. She didn't want to go because of the way people talked to her there. And then when they get there, people often just confound that by not treating her very nicely because they know she's got a mental illness and she might be a bit difficult.

And I've got a friend who has severe mental illness and who has terrible problems because they really don't take into account the fact that they might need to spend more time with her and she might have these fears, and anxiety might make her other problems worse, so they get impatient. When I was starting to get quite down and a bit irritable with them, over the pain, I could sense they really didn't want to know.

And why is that? I mean, because nurses and doctors have, as part of their training, they do have training in mental health, don't they?

L: A lot of general nurses don't get very much training, and I do think there's a lot of things about how people often view mental health problems as bad behaviour, I really do. Even mental health nurses do that. Something that's under your control, you know, you can stop it.

If you're psychotic, it's like, oh well, you're really mad, you know, you can't control it … But if you're not psychotic, then it's just you, it's just you being difficult. Some of the people I've spoken to over the years have had awful experiences with physical health problems because of that.

In the sense that they don't feel they're on their side or they're not listened to?

L: They don't feel they're listened to. They feel that they're just treated as difficult and troublesome. That's one of the reasons why people with self-injury get treated so badly in A&E, because it's treated as bad behaviour, they're a nuisance, and some of them just don't get good treatment. Well, terrible treatment.

And why do you think that some of the healthcare staff put that, and particularly mental health staff, put that nuisance label on people?

L: Because it's easy. It means you don't have to actually sit down with people and try and understand why they're feeling …

Story 15: Shona

Shona has had breast cancer. Shona had positive experiences when first diagnosed and treated, including kindness shown by the nurses during chemotherapy treatment. She has been on long-term treatment to prevent recurrence and has suffered significant side effects. Shona describes how clinicians don't always appear very understanding of the impact on the patient's quality of life of treatments that are prescribed.

Shona: I was diagnosed with breast cancer in 2012. Three years before that I did find a lump in the same place. I went to see my GP and they referred me to the hospital.

They found that the lump I had was not cancerous, they said, and they took the lump out, but they said, let us know if it comes back again and contact my GP, and that was it. And then two years on, in March, I felt the lump again but I thought it was just tissue which had hardened from the previous operation I'd had. So I went back to my GP and said I was a bit concerned and so she said she'd send me back to the hospital, which she did. They did a tissue biopsy and they found that it was cancerous. I was referred to an oncologist. He said that they would only do a lumpectomy – I thought I would have to have a mastectomy. They checked my lymph nodes and it had gone into my lymph nodes but they didn't know how many. So they scheduled the operation I had the lumpectomy and they took fourteen lymph nodes from under my arm. Only two was actually infected. So I stayed overnight in hospital.

My mum passed away the weekend I had my operation. It was a really tough time. They said I'd have to wait three weeks to start my chemo. I had to have six cycles. Obviously I lost my hair and it was a gruelling time and it is such an awful thing to go through. It really is. Then I waited another three weeks before I started my radiotherapy and was for three weeks, every day except for Saturday and Sunday.

I'm on Tamoxifen tablets now. I was suffering a lot with the side effects. I thought, the five years is up and so I can come off it and go back to some sort of normality. But when I went to my oncologist he said that they are now finding that with a lot of women who have come off it after five years, the cancer comes back. So he's suggested me staying on it for another five years or possibly for life. A lot of my friends who are also on Tamoxifen have also come off it after five years as they are really having a tough time with it.

Does it give you a tough time being on Tamoxifen?

S: I've got used to it now. I would say the first four years were very difficult with the side effects, because I suffer with osteoarthritis. Tamoxifen affects all your joints and muscles, it makes you tired, that sort of thing. It affects people in different ways. But my body has got used to it now. I've been taking this for eight years now so it's in my system.

Do you think that doctors understand enough about what it's like living with quite severe side effects of medication?

S: No, I don't think they do. They have so many patients coming in. Since I was diagnosed, it seems that every other person you speak to has had cancer or knows someone that's going through it. They've been overwhelmed with the amount of people who've been diagnosed. So I don't think they really understand. No matter how you are feeling, they are more concerned about the tablets you are taking rather than you as a person.

And, of course, when you go there you've only got five minutes with them. It's only at the beginning when you are diagnosed that they seem to have more time. After two or three years you're just a normal patient and they have to tick the boxes and in five minutes you're out the door.

The thing is you don't get to see your oncologist, you see his registrar, maybe he's so busy, he doesn't have the time to see you. That is the thing I found difficult, because the first year, you build up this relationship with him but then after the second year if your treatment's gone well and you are sort of on the road to recovery then you're passed on to his registrar. Then you have to go through the whole thing again with them. You don't always see the same person, that's the other thing. They have notes but for some reason they still ask you what happened.

The other thing was, apart from the support that I got from the hospital, the nurses who did the chemo were amazing, they really knew their stuff. They knew what you were going through as well. Obviously they had a lot of patients coming in.

I was also offered physiotherapy after that and I was even offered counselling because my mum had just died. I was also offered the services of a charitable organisation. What happens is when you are diagnosed with any type of cancer they give you six or seven free treatments. You can have reflexology, acupuncture and massage. They teach you about nutrients. And it was amazing, I thought it was such a good idea. So I was offered that. You got a goody bag with lots of makeup and things. It was nice and it gives you a bit of a lift and made you feel you're a woman.

My faith helped me so much. I don't think I'd would've been able to cope without it. Father X was very good and he was such a strength. So I had a lot of family and friends around and gave me a lot of support. And my boss was good as well because I had to have time off, obviously.

It's interesting because some of the most important things that supported you were nothing do with the NHS.

S: You are right, because there were a couple of women who were there with me. One was a lady who was in her near 80s. She didn't have family. A taxi had to bring her in for her to have her chemo and she'd go home very tired and she used to be sick with it and not have anybody there to make her a cup of tea. She said she'd just get into bed and sleep right through to the following day.

In terms of the doctors and nurses and actually all the other people involved, what were some of the things that stood out as really good in your memory?

S: The doctors. I have to say, they're not there now. Apparently they've left, they've retired or have moved on to another hospital. The oncologist I had was amazing; he was such a nice guy. Even the surgeon. I think their support at the beginning, just to make sure that I had the right treatment, and obviously if I wasn't happy about anything I just had to pick up the phone and speak to the nurse. My nurse was very supportive, she was always there if I needed anything. But, like I said, most of the time I just got on with it.

References

Department of Health (2013) Patients First and Foremost, Cm 8576 (London: HMSO), https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/170701/Patients_First_and_Foremost.pdf (accessed 5 January 2021).

Mencap (2007) Death by Indifference, www.basw.co.uk/system/files/resources/basw_121542–4_0.pdf (accessed 5 January 2021).

Mencap (2017) Treat Me Well (London: Royal Mencap Society), www.mencap.org.uk/sites/default/files/2018-07/2017.005.01%20Campaign%20report%20digital.pdf (accessed 5 January 2021).

NHS (2019) The NHS Long Term Plan, Version 1.2 with corrections, August, www.longtermplan.nhs.uk/wp-content/uploads/2019/08/nhs-long-term-plan-version-1.2.pdf (accessed 3 January 2021).

Nuffield Trust (2020) “Indicators: A&E waiting times”, www.nuffieldtrust.org.uk/resource/a-e-waiting-times (accessed 5 January 2021).

Royal College of Emergency Medicine (2020) Position Statement: COVID-19 resetting emergency department care, 6 May, www.rcem.ac.uk/docs/Policy/RCEM_Position_statement_Resetting_Emergency_Care_20200506.pdf (accessed 5 January 2021).

Royal College of Physicians (2017) “Future Hospital Programme: delivering the future hospital”, RCP programme, 23 November, www.rcplondon.ac.uk/projects/outputs/future-hospital-programme-delivering-future-hospital (accessed 5 January 2021).

Organising care around patients

Stories from the frontline of the NHS

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