Relationship with Health and Social Care
People who we spoke to had a varied experience in their dealings with mental health services. Some people we spoke to valued the overall support of services, like helpful professionals, other patients to share stories with, the treatment they had received (particularly when very distressed), and the information they were given. However other people were critical of the services they received, for example staff didn’t communicate properly and didn’t listen to patient needs. Some felt services weren’t well coordinated and they were not able to see the same professional throughout their treatment, or found that hospital and community care was not joined up.
This section is about what people generally valued about health services and what they felt needed improving. When talking about services, people often focused on how much time they were given to talk about their problems, and whether their views about their treatment and condition were taken seriously.
The main complaints people voiced about their health and social care were: feeling powerless, not feeling cared for; not being listened to or taken seriously; not being able to access healthcare staff when needed; not having enough help and support (particularly outside of a “crisis”); and that there was too much variation in the quality of services.
Standard and consistency of service
People spoke to us about how much services had improved over the years. Some people gave very positive reviews about the service they received. Jane compared having ECT to the care she received during a planned caesarean. She described having “highly trained amazing consultants all focusing on me”. She felt they were “committing their time to my care”. Tania described the ECT staff as “passionate advocates’” of ECT because they could see how it worked.
However, others felt that there were ongoing problems that needed to be addressed. Alka asked the Home Treatment team not to visit her husband anymore because they just seemed to sit and listen to her husband talk about how he was, which she thought just prolonged his illness. When Tristan’s wife suffered postnatal depression after the birth of their first child, they had a lot of visits from the Home Treatment Team. Tristan said although they were well intentioned, they varied in their expertise, and he felt they were not able to do much. Tristan and his wife moved to be nearer his family before having their second child so they could get family support instead.
Most people had mixed, rather than just good or bad experiences of health services. Beattie said that there were fantastic individuals within the health service, although she thought some aspects of the system needed to change e.g. she felt people are given too many drugs.
Despite ongoing challenges, some people gave examples of the health service trying to accommodate their individual needs. When Steve’s wife was given ECT as an outpatient, the transport was a “bit awkward” because he was working. A freelance nurse was arranged to accompany her in a taxi back to the house (although she then had to get a taxi back to the hospital). But he was glad his wife was not being kept in hospital, and the hospital later organised for her to be transported without an escort in a shared minibus.
Most people we spoke to had seen a number of different health professionals and been in hospital many times over their lifetime. People spoke about how much they valued coordinated care that adapted to their complex needs. David Z liked the fact that he had a social worker and a mental health support worker to help him through his discharge from hospital. Kathleen was impressed by the way in which her care was transferred from North America to the UK. Her care team handed over to a GP and psychiatrists in the UK and talked to each other on the phone so that preparations were made for her return.
When people were experiencing mental health problems things could change very rapidly and sometimes it was hard to find a professional who was available when people really needed them. Catherine Y’s consultant went on holiday for two weeks whilst she was an inpatient; she felt there was no one else she could ask about her care whilst he was away.
Some people talked about the problems that arose when their doctor was changed at short notice, or when they were handed over to a new psychiatrist who didn’t agree with their treatment regime. Sometimes this caused a setback in the person’s recovery, although for others a new person coming in with a new approach could be positive (see for more ‘Changing medication and moving to ECT’, ‘How effective did people find ECT’).
Communication and building a relationship
Many people talked about the importance of having a good relationship with medical professionals who were treating them and making decisions about their treatment (see for more ‘Messages to others’). People often remembered caring professionals who had tried to help them, who spent time with them and took their concerns seriously. Jane remembers her occupational therapist: “I can remember what he looked like and I felt warmly towards him”. Tania had been threatened with ECT by a private consultant who she described as “angry” with her for attempting suicide. But when a family friend later recommended ECT and explained she had a choice, she had a very positive experience and felt more comfortable about ECT. When the ECT ended, Tania “felt almost disappointed that [she wouldn’t] see [the staff] anymore”.
However, most people remember occasions when staff did not communicate well with them. David Y said hospital staff didn’t interact with him or his partner. Catherine Y found the hospital staff “difficult”. Matt felt that there was poor communication from the ward as to when he could see his wife after she’d had ECT.
Sometimes when people felt very distressed and concerned about their future they could be unsure what was happening and some describe feeling powerless. This lack of control was worsened by professionals who discounted what they were saying or ignored them when they needed help. Yvonne felt that a nurse wrote things in her notes that weren’t true and she had to check facts with her husband. When Jane was mentally ill, her doctor didn’t want to refer her and she feels she was only able to access specialist help because her friend (a community psychiatric nurse) became her advocate (for more see ‘Support networks’).
Being involved in the treatment plan
Tania worked with her psychiatrist to make a decision about whether she should have maintenance ECT to help her come off one of her medications, and took the research she had done to her appointments. But not everyone felt they had a say. Catherine Z knew ECT worked, but despite asking for it repeatedly for her son, the psychiatrist tried many drugs before ECT was offered. Steve also found he had to ask for ECT and said it is not being offered to his wife now as readily as it was in the 1970s and 80s.
Being sectioned was particularly difficult for some people as they felt they had little choice over their treatment (for more see ‘Compulsory detention and treatment’). Sue feels when she is sectioned she can’t put her view across and psychiatrists then “have more power than [is usual in] the legal system” where each party gets their say. Although she has requested not to have ECT in future, she thinks she will be forced to have it.
Carers sometimes had to work hard to be included in the care of their loved one. Initially they were often unsure about their rights and how mental health services worked.
You can read more about people’s relationship to healthcare services here ‘Staying in hospital’ and ‘Diagnosis of a mental health condition’. You can read more about ECT specifically in ‘Experience of having ECT’ and ‘Getting information about ECT’.
Last reviewed January 2018.
This section is about what people generally valued about health services and what they felt needed improving. When talking about services, people often focused on how much time they were given to talk about their problems, and whether their views about their treatment and condition were taken seriously.
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- Sex:
- Female
- Background:
- Lorraine, age 52, works as a cleaner and lives by herself but close to their mother. Annie (Lorraine’s sister), age 50, works as a nursery supervisor, is married and has two children. She also lives close by. They described their ethnic background as White British.
Annie: And then they came back that they think that it was anxiety due to my dad and my brother. So they were, just sort of said, “Oh, here’s a load of tablets. Go home.” You know, they were, they were very, very, we were very lucky, we are very lucky.
Lorraine: Yes, they’re good doctors.
Annie: Our doctors are fantastic.
Lorraine: They really are.
Annie: Yes.
Lorraine: Yes.
Annie: And they checked, you know, they were saying, “Well, let’s check this, let’s check this and let’s check that and make sure this is okay and see whether something’s not going on or we’re looking for something different.”
Lorraine: Yes.
Annie: And literally they have checked her, you know. I mean only yesterday or the day before she got a mark on her ear, our doctors, “Let’s get it checked out.” You know, so we was in the hospital yesterday just checking her out. Then she had a stomach complaint, didn’t she, Lol?
Lorraine: Yes, so he sent her for an examination.
Annie: “Let’s send her for a scan. Let’s just check.” They’re so, so good. We’re very lucky.
Lorraine: Yes, really good. We are.
Annie: We’re very lucky really. They’re fantastic.
Lorraine: Yes, they’re good doctors, they really are.
Annie: Aren’t they. And if mum can’t get down to the doctors they come in and see her. You know, they’re just so, so good.
Lorraine: The district nurse comes in every now and then to check all the little things and gives her a B12 booster. And she had that yesterday.
Annie: Yes.
Lorraine: So, you know –
Annie: They’re very good to her. So it weren’t a case of –
Lorraine: She’s having all the care that she can possibly have really.
Annie: Yes, and then when the doctors did everything they possibly could, they put us on to mental health.
Lorraine: Yes.
Annie: Like they’ve done all the physical –
Lorraine: Physically she’s fine.
Annie: They’ve checked everything. Physically she’s fine. Now we have to move her off. So, and then it went on from there.
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- Age at interview:
- 39
- Sex:
- Female
- Background:
- Mandie is married, works as a business coach, has two children and described her ethnic background as White British.
And again you said that you made a recovery and that recovery took some time. In retrospect, do you feel you made the right decision not to have the ECT at that time?
Yes, yes, I just wished, ironically, I wished I’d stopped listening to the NHS, earlier. I wish I’d really listened to myself earlier. When you’ve got a mental health illness, you can’t listen to yourself, because you’re, you don’t know what you trust about what you’re saying. But, so I suppose I had to get, that low and feel completely out of options, to go the direction I did. But, no, I think I would have got better a lot quicker if I had not listened to the NHS, a lot sooner.
I just do feel very strongly, that I’ve had experience of it, on many occasions, with friends and members of family now, and with myself, and the NHS is not learning its lessons. And it isn’t about money, I really don’t think it’s about money. I think it’s sitting down and listening to that individual, and understanding that person better. Because if we, if services become, “Well, we listen to the individual” then I think we’ll get a higher success rate, there’ll be less drugs being handed out, with far fewer side effects. So, it will be a less strain on the NHS, and people will be healthier, and hopefully we’ll lose less people, to illnesses that we just shouldn’t be.
Yes, and I think that kind of goes back to what you were saying about the time when you were thinking about ECT and looking at having ECT, that you felt you weren’t being treated as an individual?
Not at all. I in fact, just saying that, reminds me I used to say, “You’re just trying to put me in a box all the time. I don’t fit your box.
People spoke to us about how much services had improved over the years. Some people gave very positive reviews about the service they received. Jane compared having ECT to the care she received during a planned caesarean. She described having “highly trained amazing consultants all focusing on me”. She felt they were “committing their time to my care”. Tania described the ECT staff as “passionate advocates’” of ECT because they could see how it worked.
However, others felt that there were ongoing problems that needed to be addressed. Alka asked the Home Treatment team not to visit her husband anymore because they just seemed to sit and listen to her husband talk about how he was, which she thought just prolonged his illness. When Tristan’s wife suffered postnatal depression after the birth of their first child, they had a lot of visits from the Home Treatment Team. Tristan said although they were well intentioned, they varied in their expertise, and he felt they were not able to do much. Tristan and his wife moved to be nearer his family before having their second child so they could get family support instead.
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- Suzanne, age 36and John age 44, work in education. They are married and live together with their young son. Their ethnic backgrounds are White Irish and White British.
Suzanne: That was around the time I developed a bladder infection and then my sleep pattern just went crazy because I was up at night going to the loo all the time. I went to the GP and he said, “Oh, see how you go for another few days.” And then a few days later I was a lot worse. I went to an A&E at the weekend. They were dealing with a lot of drunk people. They sent me home with a paper bag and said, “Oh panic attacks are quite common in young girls, young women.” And I just went downhill. And that weekend John was away and there was a friend came with me to the hospital and I just didn’t have my mental health assessed and the following week then, I just got really, really ill with panic attacks and delusions and depression I suppose. I had reflexology treatment on the Saturday & it brought out the panic attacks. It has never had that effect on me since.
You were saying earlier on in the interview that you don’t feel that either your bladder infection or your lack of sleep was properly addressed? Is that right?
Suzanne: Not early on enough. Yes. I think, I think I had left it a few days and let the bladder infection get worse.
John Y: I think they probably should have looked at Suzanne’s notes and realised that she had had a previous…
Suzanne: Episode of psychosis.
John Y: ….Episode and taken a second look at this and thought we need to keep a very close eye on this.
Suzanne: Yes.
John Y: Because she spiralled extremely quickly into you know, quite a serious state of depression.
Suzanne: Hm.
John Y: That’s not necessarily something you can predict but at least you should, if something like this has happened before, perhaps it is she would be a candidate…
Suzanne: Yes.
John Y: … where it’s something that they really should not have dismissed from A & E. They should have taken a closer look at it.
Suzanne: Hm. And they knew in this country that I had been on Olanzapine before. You know, so even though my notes hadn’t been sent over from [name of country], there was some record of the psychiatric history there. It’s just everywhere I turned from the GP to the A&E people, on the second occasion I just wasn’t getting the help that I needed and then a couple of days were going by and then I was getting seriously, seriously ill.
John Y: Yes. I think your GP let you down quite fundamentally really.
Suzanne: Yes. I didn’t get to see my GP when I had the sleep problem. And maybe not when I had the bladder infection, like around the same time. I saw another GP it wasn’t my own GP. And he didn’t know me and hadn’t looked into the history. So I don’t really blame him for his decision-making but I wish that he had looked a bit deeper. And I wished that I had spoken up and said, “Look I have a history of psychosis and that’s why I’m so worried right now.”
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- Age at interview:
- 49
- Sex:
- Female
- Background:
- Tracy is a charity coordinator and lives with her husband and two children in West Wales. She describes her ethnic background as White British.
I can remember them not being able to find a vein and I had to have my drip in my foot, and I can remember the people in the general hospital not treating me very well. They, having worked there, the majority of people just thought that we were wasting their time and it very much felt like that. Whether it was my depression and so that changed my perception I’m not sure or whether it was reality. And I can remember getting the hospital ambulance to take me from the general hospital to the Department of Psychiatry.
You know, I’ve got some memories of in the Department of Psychiatry. I was there for five months. I still remember some of the people that I met, and the fact that they were so kind to me and not sectioning me because they thought it would affect my career.
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- Age at interview:
- 38
- Sex:
- Male
- Background:
- Tristan is a paramedic, and lives with his wife and two small children. He describes his ethnic background as White British.
We haven’t required the services that were in place ready for her but it was so nice to know they were there to have that reassurance and everyone was brilliant they were all really understanding all of the mental health team and [name of wife]’s just recently written them a letter actually to thank them all. But yes it just went extremely smoothly and we’re very, very grateful for that because it needn’t have necessarily been that way, but yes didn’t need the caesarean after all which was good.
And what type of services were set up in place ready to go if you…?
Well there were mental health services attached to the hospital because obviously we’d moved to a different are so this was in [place] now and they, I think they, some of them had particular responsibility for puerperal psychosis and they, so they were going to be available, I think the main issues was being available and been aware and so they were going to be available in the time immediately after the birth. And then [name of wife] had also been introduced to the community mental health team local to us and they were also kind of sort of ready and waiting to step in once [name of wife] was home. And the mental health team at the hospital said that they would also be available for input as well for a little while after the birth as well. So it was just mainly everyone being aware and being ready to provide some input as it was needed.
When people were experiencing mental health problems things could change very rapidly and sometimes it was hard to find a professional who was available when people really needed them. Catherine Y’s consultant went on holiday for two weeks whilst she was an inpatient; she felt there was no one else she could ask about her care whilst he was away.
Some people talked about the problems that arose when their doctor was changed at short notice, or when they were handed over to a new psychiatrist who didn’t agree with their treatment regime. Sometimes this caused a setback in the person’s recovery, although for others a new person coming in with a new approach could be positive (see for more ‘Changing medication and moving to ECT’, ‘How effective did people find ECT’).
Communication and building a relationship
Many people talked about the importance of having a good relationship with medical professionals who were treating them and making decisions about their treatment (see for more ‘Messages to others’). People often remembered caring professionals who had tried to help them, who spent time with them and took their concerns seriously. Jane remembers her occupational therapist: “I can remember what he looked like and I felt warmly towards him”. Tania had been threatened with ECT by a private consultant who she described as “angry” with her for attempting suicide. But when a family friend later recommended ECT and explained she had a choice, she had a very positive experience and felt more comfortable about ECT. When the ECT ended, Tania “felt almost disappointed that [she wouldn’t] see [the staff] anymore”.
However, most people remember occasions when staff did not communicate well with them. David Y said hospital staff didn’t interact with him or his partner. Catherine Y found the hospital staff “difficult”. Matt felt that there was poor communication from the ward as to when he could see his wife after she’d had ECT.
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Over the years Yvonne has had many hospital admissions and has seen many psychiatrists. She says she gets on better with female psychiatrists because of her history and prefers when they don’t “clock watch”.
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Although John Z has had a good experience with his psychiatrist, he said some mental health professionals treat patients as ‘over there’, and see themselves as ‘the expert’.
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- Sex:
- Female
- Background:
- Yvonne works for an organisation that looks after children with addition needs, is married and has a daughter. She describes her ethnic background as White Scottish.
Yes, I’ve seen quite a few psychiatrists over the years. Personally I get on better if the psychiatrist is female. But that’s just because of the history that I’ve got. But the psychiatrist that I’ve got now is very encouraging and she doesn’t clock watch, you know, and that means a lot, because there’s nothing worse than… you know, I’ve had psychiatrists saying and I would have started to open up a bit and right that’s your time, you know, and you’re like I’m not going to see you for another two months. You know, but yes. If they do ney talk much, I mean I know that they’ve got lots of patients and they have to go through each day, but they’ve got time slots and you do try as a patient to keep it within, but if you were to overrun by five minutes it’s fine and you can do it, you know, with her and she’ll not check it.
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- Age at interview:
- 63
- Sex:
- Male
- Background:
- John is a professional.
The psychiatrist explained it perfectly. If you ask them, they tell you. The trouble is with my view, this may have to be wiped off the tape, but some health, mental health professionals still treat patients as kind of “over there”. Not, we still, I mean the lived experience form I’m with you still get resistance from mental health professionals to ordinary people being involved. This sort of “I’m the expert”, you know, that sort of thing. But I didn’t find that with these psychiatrists.
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- Age at interview:
- 49
- Sex:
- Female
- Background:
- Cathy works as a part time cleaner and volunteers in a plant nursery. She lives with her son and describes her ethnic background as White British.
And I think I would say to any health professional that if the patient expresses a, perhaps expresses is the wrong word, well, if they tell them they felt a certain way, that they should acknowledge that and not just dismiss it and saying that, “No, you know, that’s not true, that doesn’t happen.” Because, well, everybody’s experience is important and should be valued and validated because it is that person’s experience. And you can’t deny somebody that experience. You can’t say, “Oh, no, it didn’t happen like that” if that’s how they experienced it.
So what other type of things do you feel, sort of haven’t been validated? If you see, are you talking about the longer-term memory effect or more the experience of it at the time…?
Well, certainly the memory bit. It’s all coming back to me now. When I got so scared of having it, I can remember them spending ages and ages with me, trying to persuade me to have, to continue with the treatment. And they wouldn’t listen to me and they didn’t understand what I was trying to tell them about how it made me feel. And I, I think, yes, they need to listen more, listen to what people say and not just dismiss them as crazy depressed people who don’t have a voice because they’re depressed.
Tania worked with her psychiatrist to make a decision about whether she should have maintenance ECT to help her come off one of her medications, and took the research she had done to her appointments. But not everyone felt they had a say. Catherine Z knew ECT worked, but despite asking for it repeatedly for her son, the psychiatrist tried many drugs before ECT was offered. Steve also found he had to ask for ECT and said it is not being offered to his wife now as readily as it was in the 1970s and 80s.
Being sectioned was particularly difficult for some people as they felt they had little choice over their treatment (for more see ‘Compulsory detention and treatment’). Sue feels when she is sectioned she can’t put her view across and psychiatrists then “have more power than [is usual in] the legal system” where each party gets their say. Although she has requested not to have ECT in future, she thinks she will be forced to have it.
Carers sometimes had to work hard to be included in the care of their loved one. Initially they were often unsure about their rights and how mental health services worked.
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David Y had to leave his job so he could bring up two small children when his wife went into hospital. He had no income and wasn’t told about all the help and financial benefits that were available.
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In the early years Carys felt side-lined by services as a carer. She felt frustrated about some of the ways in which users of mental health services had been treated but felt that things were improving.
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- Age at interview:
- 52
- Sex:
- Male
- Background:
- David is 52, lives with his partner and has children. He is a full time carer and describes his ethnic background as White British.
Yes I mean I was trying to motivate somebody who only wanted to sleep all day, even though she was more responsive. Bringing up two, a toddler and a new born.
And I didn't know there was extra help available, I didn’t, I’d had to give my job up so. Well they put me on incapacity benefit so that would help me because I’d had to give my job up to look after the family, they didn’t tell me what help was available. I said I didn’t know about all the benefits, didn’t know it but I’d been toddling backwards and forwards to the hospital and didn’t realise I could claim for that, which would have helped because it put a, had to do everything and had no money and you end up in debt. I didn’t tell her what had, you know, it didn’t help because of her, trying to help her had put us into debt. I didn’t tell her anything of that. Didn’t tell her that I was borrowing left right and centre, she just, well she didn’t know, she didn’t know what was going on.
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- Sex:
- Female
- Background:
- Carys works for a charity which represents carers, has three children, is married and describes herself White British.
I did manage to put some of my feelings, about the way [name of daughter]’s been treated over the years. And the dreadful regime, really, really dreadful regime. And the… the absolute, I can’t think of the word I’m groping for now. …the family and the carers have no choice. They just, whatever happens to their service user it’s always as though the only time they’re interested in you is when they want her to come home, or want her to do something. You feel really, really inadequate and very, very frustrated, because you know in your heart that what’s happening isn’t right, but you have no rights at all. You have no choices. Nobody really listens to you. They might occasionally if you get really mad and sound off, but they’re only paying lip service to you, they’re not really interested in how you feel, but I think things have changed. I do think things have changed, and they are that much better.
I find consultant psychiatrists to be totally entrenched, I’m going to get this word wrong, I’d said intransigent. They have no concept of families. They don’t really have much concept of service users. They seem to be almost like a law unto themselves totally different from consultants in other health care situations, and I don’t know where their enormous conceit comes from. But they do have this built in idea that if they think they want to do something, it has got to be right and they’re not right. They can be obviously.
But again we are seeing some young consultants coming into the trade as it were who are far more accepting and far better with carers which is really very good.
You can read more about people’s relationship to healthcare services here ‘Staying in hospital’ and ‘Diagnosis of a mental health condition’. You can read more about ECT specifically in ‘Experience of having ECT’ and ‘Getting information about ECT’.
Last reviewed January 2018.
