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Chapter three: Results

Introduction

3.1 This chapter describes the results in terms of the 5 key themes that have been indentified - access to systems and staff, environment and facilities, good communication and information, expert clinical care and continuity and coordination. Other smaller issues are also described. Within each theme, the results are described for GP services, inpatients and long-term conditions. Verbatim comments from participants are used to illustrate each theme.

Access to systems and staff

3.2 Across all of the focus groups, people reported how important it was for them to be seen by the right service / healthcare professionals when needed. For some patients, particularly a number from BME/ethnicity group, easy access to services was a theme, with people being unsure why you needed to access particular services through other ones.

I really don't understand why I have to go to the GP if I know that I need to go to hospital. It makes no sense. [ BME/ethnicity G]

I had a farcical situation when I went the A&E department. I had a recurrence of a problem that previously NHS24 had referred me to A&E where I was treated. When it recurred I went straight to A&E but they wouldn't see me unless I phoned NHS24 from the hospital. So they made me phone NHS24 and they referred me to A&E and then they agreed to see me![ BME/ethnicity G]

GP Services

3.3 Access to general practice services was seen as particularly important to people. Although, the person that patients turned to first depended to some extent on the nature of their health problem and the time of the day, it was normally the GP or, for minor concerns, a pharmacist. One person however reported using the website netdoctor.com as a first point of call.

You decide depending on what it is. Sometimes you sweat it out, others you go the doctor and get an appointment. [ GP G]

Minor illness, a cold or that you deal with it yourself. If there's something that's not quite right you're going to call your doctor, depending on what time. If it's during the night you call NHS24, if it's the morning you'll phone up and get an appointment. [ GP G]

3.4 For those that wanted to see a GP about their condition, some patients were happy to see any GP, whilst others felt that seeing a particular GP was more important. For example for some women, seeing a female GP was preferred. Others talked about particular GP's they did not want to see due to previous negative experiences or other peoples opinions.

Choices - I can't get this choice thing into my head. All I want to know is when I go to see someone they won't kill me and they have a passing medical knowledge. I don't want to choose, how could I? [ GP F]

I prefer to see a female doctor, I don't mind the male ones, I just prefer the female ones. [ GP F]

It depends, if you want to see a doctor urgently it could be any doctor. But I have to say, for me any doctor is OK, except this one doctor who I don't have confidence in. I know different people and they don't think well of him. [ GP S]

3.5 Most people had experienced having to wait beyond their appointment time to see their GP. For most people short waits were acceptable however longer waits were seen by some as unacceptable, principally because of the implications of this e.g. around missing public transport.

Ten minutes late yesterday and that's absolutely fine. They didn't tell me but that was fine. It's not nearly as bad as it used to be, used to be normally an hour and they had all the excuses but it's never like that now. [ GP G]

15 minutes is OK but longer than that I think it's unacceptable. [ GP F]

3.6 All of the people attending the focus group were happy with their GP practice opening hours, despite most of the practices only being open during the daytime on working days. However, those that had practices that opened later found that to be useful on occasions.

Mine is open some nighttimes and on Saturday mornings. [ GP G]

3.7 Many people found that it could be very useful to have a telephone consultation with a GP or nurse, although not all knew whether this was an option. This service was particularly appreciated as it provided reassurance on conditions that were of immediate concern.

For me, for the kids, it more about getting reassured so I like to be able to speak to someone on the phone straight away. You're worried about things like meningitis. [ GP G]

I didn't know you could have a telephone appointment, that's really good, I don't like going to the GP practice at all. [ GP F]

3.8 Being able to easily organise an appointment either urgently or a few days in advance was important for all of the people who attended the focus groups. For most, their GP practice operated a system where patients had to phone up in the morning or early afternoon to get an appointment that day. For some patients, this system suited them well. However, for other patients the system didn't work well for them and their families. Although most of the patients were happy to phone up the same day for an appointment, some of them wanted to be able to book a routine appointment several days ahead and this wasn't always possible.

My doctor opens at 8 and then you phone before 9 and you've got a pretty good chance of getting an appointment that day. You've also a good chance of seeing a doctor you want as there's a couple of doctors I really don't like and a couple I really do like. It's quite straightforward. [ GP G]

Can get same day, but you have to phone at half past eight. Problem is that when you phone at half past eight it's very busy and you can't get through. By the time you get through you're left with a rotten time to see the doctor. I've got 4 children and you have to fit these appointments in with all the other things you do and you end up seeing a doctor you don't want to see.. They have 7 doctors and only one lady doctor and it's quite difficult to get to see her [ GP F]

3.9 A few patients were registered with GP practices where all appointments were booked in advance, and the wait to see a GP varied from a few days to several weeks.

Depends when you phone, it's always busy in the morning. And they'll say the first appointment I have is three weeks. This week I was lucky I got an appointment in 3 days. [ GP G]

3.10 Getting through to the practice by telephone to arrange an appointment was a frustration for some patients, and had potentially harmful consequences for others.

Phones -they're just engaged. They've got 11 lines and there constantly busy. [ GP G]

My husband had a heart attack, I didn't know at the time. It took me from 9.30 in the morning to 3 to get through to the practice, and they said bring him in. I said no and they eventually came round and called an ambulance straight away - had a very lucky escape there. [ GP G]

3.11 Several of the patients had required home visits from doctors during the past year. For most of them this was accommodated without any problem. Although for one participant the home visit was not made as had been agreed.

Yes, when I had major surgery and was at home, they visited me no problem [ GP G]

House calls - it depends on which practice sometimes, it's inconsistent. We had one booked, but nobody turned up. Heads rolled that day. [ GP F]

3.12 Many of the patients had phoned NHS24 when their GP practice was closed. Although most patients had low expectations of the service, having heard horror stories the experiences related were all very positive.

Phoned up the 24, and they told me to go up to Easterhouse, and they referred me to emergency ENT and it was all brilliant. All done within 2 hours start to finish. [ GP G]

So it's a good service, you phone them and they then phone you back, and they give you advice, or go to the out-of-hours practice or they'll arrange a house call. [ GP F]

Inpatients

3.13 For those that had been a hospital inpatient, there were also concerns about accessing services and staff when they needed. When admitted to hospital as an emergency, one person was particularly worried about how long he had to wait to be assessed and the potential implications. Similarly, for elective admissions, several who had people waited for surgery were worried about how long they would have to wait for their operation and the potential risks to their health during their wait. Several people were also concerned about where they were sent for procedures and whether this was fair e.g. some patients being sent to private hospitals.

It took me 2 hours to be assessed with a head injury. [ IP E]

Because of having cancer I was wanted to get admitted for my surgery as soon as possible and I had to wait nearly 2 months, which worried me. [ LTC E]

Some people get to go to the private hospital at Murrayfield, but I had to go to the Royal, and this seems unfair to me. [ LGBT E]

3.14 Once admitted to hospital, people were aware that there was one doctor in charge of their care, and most felt reassured and confident as a result of seeing that doctor. However, several people were disconcerted about not seeing their consultant at all during their stay, or worried by the fact that they has not spoken with their surgeon before an operation. They often attributed their problems in seeing a doctor to a lack of time available to the doctors.

They came to see me twice a day the surgeons and I couldn't fault them and when I went to see them again, they were there and I saw them again and that's what you want. [ IP E]

No, I never met the surgeon until I went into the theatre, and I would have preferred to speak to him before. [ IP S]

3.15 Although people preferred to see the doctor in charge of their care, most agreed that they could arrange see a more junior doctor if their consultant was not available.

3.16 Access to nursing staff was also highlighted as an issue for several of the patients. Although nurses were generally available in sufficient numbers, a few patients expressed concern at the shortages of nurses on particular occasions or at particular times of day or night.

I felt that there was a shortage of nursing staff at particular times, not at all times, particularly for help with washing and things like that. [ IP E]

3.17 Some patients, particularly in the BME/ethnicity and religion/faith focus groups, were concerned that it was sometimes difficult to be examined or treated by a doctor or nurse of their gender. Some women found this to be particularly distressing, although it was noted as a problem for some men as well. However, for most patients this was seen as something that was less important in an emergency.

For me there's a real problem with getting to see a lady doctor and there can be a real fuss about this. Particularly for gynaecology and things like that it causes a lot of embarrassment, and the thing is that there's lots of lady doctors around so it should always be possible [Religion I]

Well it's more of a preference really, I would always prefer to see a woman if at all possible. If there's no option then I would see a male doctor. [Religion I]

3.18 Access to representatives from their own faith or religion was a problem for many of the patients in the religion/faith group. Normally access to a chaplain was offered, but patients were unsure about their role. For some religions/ faith groups systems were not in place to allow them to contact someone of their own religion/ faith, and for others the systems made contacting someone rather difficult.

I was asked whether I wanted to see a chaplain at some point, but I knew they wouldn't see things from my perspective so I didn't bother. [Religion I]

Well you can tick a form to say that you want to be visited by a chaplain, but the problem is if you move wards they won't tell the chaplain because of the data-protection act. [Religion I]

Long-term conditions

3.19 For people with a long-term condition, access to staff was also important. For the majority, the most important thing for them was that they were able to contact someone about their condition quickly if needed - whether they used this facility or not. This was seen as offering great reassurance. Most of the patients had the name and telephone number of someone to contact, and had used the number. Even those patients who had not used the number appreciated the security of having it available. On the other hand, people who hadn't been given contact details, described the anxiety that had caused them.

I have a direct contact at the hospital and phone them up directly if I needed, and I have done that and that's fine. [ LTC B]

If you can phone your consultant makes an awful difference to you, but if you've got no-one you can phone you can get very anxious. [ LTC E]

Access to staff for people in rural area problems

3.20 For some of the patients in rural areas, the specialist care or facilities that they needed were not available locally. For these people they felt that, if possible, these services should be available closer to where they lived.

However, the specialist treatment I need is not available locally - only in Ninewells Dundee and there is a dispute about costs. This stops me from working. [ LTC B]

It's not like a big city where many services are available locally. [ LTC B]

Environment and facilities

3.21 Although not directly linked to their clinical care, many aspects of the healthcare setting were important to people.

GP Services

3.22 For all of the participants, the most important thing was that their GP practice was close to their home.

It's essential that it's close by. [ GP F]

3.23 People talked about two types of GP practices. Some liked the fact that their practice provided a wider range of services than just a GP practice, whilst others liked the fact that they had a small practice who they felt were a bit more personal.

My practice has got everything, and that's really good - lots of different services in my practice, cardiographs, lots of tests, they have diabetic clinics, nurses, doctors all sorts of people. Sisters, nursing staff, District Nurses, Phlebotomist. [ GP G]

My practice is only a doctor and a chiropodist every 6 weeks, but it's small and they really care about you and know who you are. [ GP G]

Inpatients

3.24 For most people, particularly those that had their own transport, the location of their hospital was convenient for them and relatively easy to get to. However, some people who relied on public transport, even those living in a city centre or relatively close to their hospital, had long journeys to the hospital. One person lived quite close to the hospital but found that because of the bus route, they had a long journey.

Public transport from Grangemouth is useless. One bus to Falkirk and then another to Stirling. It takes a very long time, although it's no distance. [ IP F]

3.25 All of the people who had been inpatients on Stornoway had also been treated on the mainland in Glasgow, Inverness or Edinburgh. The systems and support available for getting to and from the mainland hospitals by plane of ferry were highly rated, with travel tickets and hotels for visitors being organised for them.

Transport - there's a travel office in town, and they organise the flight and everything - well you pay the first £10, but it's a brilliant service, you don't have to worry about anything. [ IP S]

3.26 Several people had needed help with getting to and from the hospital and it had sometimes been difficult to organise this. It was felt by one participant that the criteria for being able to get transport could be too stringent.

They have transport but they have criteria and it's quite difficult to get that. [ IP F]

3.27 Several patients found that once they had reached the hospital, there was still a long way to go to reach the actual clinic. For one person this was a particular problem.

One thing is the distance from the car-park to the clinics. If you've got a stick or something or a wheelchair, it's a _ hour walk from the bus-stop to even where the clinics start. [ IP E]

3.28 Most of the patients that have their own transport had concerns about the car parking - either the availability of parking spaces or the cost. For most patients, the availability of car-parking spaces was limited and at peak times it could be very difficult to find a space. Even the patients that had disabled (blue badge) parking permits sometimes found it difficult to park. At some of the hospitals, the car parking was free for patients and visitors, and at others payment was required, and several patients complained about car parking charges as a matter of principle. For others, a small parking change was seen as quite acceptable. Some patients felt the costs were very high, particularly for visitors if they were in hospital for a long stay. For one person who lived in the Borders but whose husband had been in hospital in Edinburgh for specialist treatment not available locally, this had proved to be very expensive.

We've got a blue badge but you can never get in them spaces. [ LTC B]

The only problem I have ….is the parking fee which I think it's a disgrace - it's taking advantage of people that are unwell, it's legalised theft in my opinion - that seems terribly unfair from my point of view. [ IP E]

Husband was in for 2 weeks, and had to spend about 50 quid on parking. It's not just being able to afford it; it's the principle of the thing. [ LTC B]

3.29 Cleanliness was an issue that concerned a large majority of the focus group participants. People described significant variations in the level of cleanliness they experienced. Some described very good levels of cleanliness and, on the contrary, some patients described dirty conditions. Several people who were transferred between different wards or hospitals noted variations in the levels of cleanliness. Problems with cleanliness were attributed by some to poor supervision rather than the cleaners themselves.

Cleanliness - this is the cleanest hospital I've ever seen. [ IP S]

Some of the other hospitals are caked in muck. [ IP S]

It depends which ward. The ITU and CCU were spotless, both unbelievable. The general ward absolutely shocking, like a different class of cleaner. [ IP E]

3.30 A number of people related the cleanliness of the hospital to infection control and particularly to MRSA infection. Several were worried about catching MRSA to such an extent that one was considering not attending for her planned operation. As well as cleanliness, some people highlighted the behaviour of staff in relation to infection control. This mainly centred around hand-washing, with examples of good and bad practice being given.

I'm very worried because I have to go into hospital and I may catch MRSA - it's a killer. [ LTC B]

We sat outside the ward and when the nurse came out she washed her hands before going in. [ IP S]

Had a doctor that came along, and he went in and held on to a patients hand and spoke to them and then went to the next patient and held their hand and no hand washing and I think that's wrong these days. [ IP F]

3.31 Most people had quite low expectations for the quality of the food, with their expectations being that the food should be of adequate quality. Comments on the quality and amount of food varied considerably depending on the hospital from the very positive to the very negative. Patients who had been to different hospitals (within and outside the same Health Board) noticed the variations between hospitals and some linked the variation in food quality to whether it was prepared at the hospital or off-site.

I think the food quality was acceptable and that's all you can expect. [ IP S]

You get an awful lot here. Food in the Western Isles hospital is as good as you'll get anywhere. [ IP S]

Disgusting. [ IP E]

3.32 People preferred to have a choice of food and this was generally offered, but not always made available. Of more concern to a number of people was that staff did not monitor the amount of food eaten by patients. One person noted the special care that she felt that she received and really appreciated.

My only observation is that no-one monitors what people eat or don't eat. [ IP S]

Well after my operation I couldn't eat anything, but late at night I was really hungry and one of the nurses asked them to make an omelette for me. They also made toast for people sometimes. [Religion I]

3.33 For some from the BME/ethnicity or religion/faith focus groups, getting the correct food was sometimes difficult.

Well they can provide Halal meat but it has to be brought in specially. Not many people here know about Halal food, and fish for example is perfectly OK, but they don't always know that. [Religion I]

Kosher food is not available but there are so few Jewish people here that this is understandable. In Glasgow hospitals it's no problem, but not here in Inverness. [Religion I]

3.33 All of the women in the groups had concerns about being mixed-sex facilities. They were all accommodated in a single-sex bay within a mixed-sex ward but most were uncomfortable about the ward itself. However, it was accepted that people may have to be in a mixed-sex high dependency or emergency wards.

…can't bear [mixed-sex wards] [ IP F]

I've had to rush to the loo and there's a naked man standing there. [ IP E]

3.34 Several people had difficulty in sleeping at night because of the noise of other patients or staff. Some felt that the noise was generally avoidable. Others felt that all possible was done to avoid noise.

Everything was OK, but the first night with a head injury and they put me in a ward with all elderly ladies and they were making noise all night long, and my head really really hurt and I needed some quiet at that time. [ IP E]

Noise at night, and it's avoidable, is a problem. [ IP S]

3.35 A number of people complained about the lack of privacy on the ward, with their condition or treatment being discussed so that other people on the ward could hear. On the same theme of privacy, several people were concerned in particular about the gowns they were given before and after surgery and how embarrassing they found them.

A bit more privacy, when a doctor or nurse is talking through your medical history, would be appreciated as everyone on the ward can hear it. [ IP E]

These gowns, post or pre operation it's just totally acceptable. This overrides religion. It just adds to your vulnerability. [Religion I]

3.36 Patients talked about the availability and cost of TVs, telephones and radios at their bedside. Availability varied between hospitals and wards and in some cases nothing was provided. In others, facilities were provided but they were not always adequate. Others had entertainment systems at each bedside but such systems were seen as luxury rather than a necessity by most patients. However, where available the cost of the systems (up to £3.90 a day) was thought to be expensive by some of the patients, particularly for people on low incomes.

…at St Johns I had absolutely nothing, there was a pair of headphone hanging on the bed, but that didn't work, there was nothing. [ IP E]

The TV system, it's alright, it's expensive but good. It's not a necessity, but if you're sitting there bored it's ideal. There's nothing to do. There is a TV room if you can get around. [ IP E]

If you're on benefits, £11 a week is a lot of money. Most people think it's a bit of a rip off really. [ IP E ]

3.37. There was debate in the inpatient groups about the use of mobile phones in hospital. Most patients would have liked to use their mobile phone and saw it as a good way of keeping in touch with friends and relatives. Some hospitals were noted as allowing the use of mobile phones, but not all, and patients commented on the apparent inconsistency.

Most people texting their families, helps to pass the time, very exciting if you get a text back. [ IP E]

We couldn't use mobiles and that was a pain. You're not allowed to and last time they confiscated it until I left. It's a load of nonsense because the pagers use the same system. [ IP F]

3.38 For a number of patients from particular religions, the provision of prayer facilities was very important to them. Although there was normally a designated area available it was generally the "chapel" which for some had Christian connotations. Additionally, prayer books and holy books were not always available, something that some patients should be quite easy to remedy.

It needs a place of worship that is neutral, not with a Christian name and not with Christian things, more for everyone. Although the one here may not officially be Christian, it's definitely not Muslin. [Religion I]

Also in hospital place of worship it needs to have the prayer books and holy books for all of the religions, that's not available at the moment. [Religion I]

Long-term conditions

3.39 Most of the patients had regular appointments for their condition or treatment with specialist doctors or nurses, so the location of the appointment was important to them. For some of them, getting to the hospital was relatively quick and simple but for other patients, particularly in rural areas, getting to the hospital was difficult or expensive. Cost, for some patients, was an issue and although they were able to reclaim the costs of their travel, it did still prove to be expensive for some, particularly where many hospital visits were required. Volunteer drives were seen as absolutely essential for some patients.

Transport is a huge problem for this part of the world, particularly on a Sunday. [ LTC B]

I can claim transport costs back - by bus or train entire amount. I can't travel by bus, so have to use the car. I get 8 pence a mile for the car, about a quarter of the actual cost. [ LTC B]

3.40 Some patients appreciated being able to be treated at home as often as possible. Going to a local clinic was also seen by some as a better option than having to go to hospital.

I'd rather be treated at home in comfort than being in hospital and also blocking a bed for someone that's really ill. [ LTC B]

I have a nurse that comes round to the house, or I go to see her at the local clinic. That, for me without doubt is better than going up to the hospital. [ LTC B]

Good communication and information

3.41 Respondents identified the way that staff communicate with them and the amount and type of information they were given as being important to them. All participants across all the focus groups, saw clear verbal communication with the staff as being an essential part of their care and treatment. The most important aspects of good communication was doctors and nurses being good at listening to their patients, if they were to understand their patients' problems. Most people who attended the focus groups felt that staff were good at listening. However, some patients were concerned when they felt that the staff didn't listen to them and of the potential consequences.

It's most important that they take time to listen, can talk to you, examine you thoroughly. [ GP F]

I had severe problems and he just jumped to conclusions - wasn't prepared to listen to me, wouldn't look at my notes to see my medical history. [ IP S]

3.42 It was also felt that staff should be good at explaining things. When doing this participants talked about how staff should also try to use plain, everyday language, free of jargon wherever possible. Some people said that they had problems in understanding doctors who had poor spoken English.

They need to explain why they're doing it, I just don't take it. They're usually pretty good at that, they don't mind. [ IP E]

I've no complaints about the doctor, she explains everything to you and you come out feeling good. I've been to other doctors and you come out feeling frustrated. [ GP G]

We have lots of foreign doctors here, and I just find them really quite difficult to understand. They're friendly enough. [ IP S]

3.43 A good bed-side manner for doctors, and other staff, was also seen as important. Again, although most patients felt that this was the case for most staff, for some patients there were difficulties with the manner of some staff. Several patients found the form of communication used by the staff to be rather too informal.

When they speak to you nicely, it makes you relax and that's important. [ IP E]

Should certainly have a bedside manner, but unfortunately there's one or two here that just don't have that at all. I'll have to see one again. It's his attitude - he sits behind his desk looking down, twiddling his pen, avoiding eye contact and there was a bad atmosphere - didn't ask me how I was, made me feel uncomfortable. [ IP S]

3.44 People also identified the amount of information given to them as being important. This was particularly important for people with a long-term condition to manage. For most patients, the amount of information was about right. However, some found it difficult to get the information they needed. One patient preparing for a sex-change found great difficulty in getting suitable information. A few patients, though, described being given too much information.

My doctors had a team and they were marvellous at explaining what was going on and what was not going on. [ IP E]

They are often reluctant to tell people everything. Doctors sometimes think that they know best, but it's my body and I insisted on getting information but people are reluctant to ask the doctor questions. [ LTC E]

3.45 For people with a long-term condition, they spoke about the importance of information when they were first told their diagnosis. They referred to the shock of being told of their condition and that sometimes insufficient information and support was available to them.

No, not enough it's a shock and you don't know who to turn to. [ LTC M]

… sent home with no information, no after care, no follow up, nowhere to turn to, sent home and basically dumped. [ LTC B]

3.46 The format of information was also identified as being important to several patients. Two patients gave examples of how the information that they needed was not available in the format they needed, one patient being blind and another who has a poor memory because of her condition.

[Blind person]Received a couple of letters yesterday, and my husband said repeatedly why don't they send it on tape, he's very good but he won't be around for ever. Also you don't always want someone reading your mail. As many times as you tell people to put in on tape, the letter comes again. I've got not help at all from the NHS for being blind. [ LTC B]

Expert clinical care

3.47 Fundamental for all of the patients we spoke to was that they were given the best quality care and treatment for their condition or illness. A number of people reported how they had been kept alive by NHS staff.

The main thing for me is they took me from an ambulance and kept me alive when I could have died. [ IP E]

I was unconscious with Meningitis and my family said they were brilliant in ITU. [ IP E]

I had a bad experience in that the op was due to last a couple of hours. When I came round I couldn't breathe and I was in recovery for 7 hours. The staff kept me alive and kept my wife informed and they came to see me afterwards and told me what happened and that was reassuring. [ IP F]

3.48 Patients expected their doctors and other staff to have had the training they needed and be kept up-to-date with new developments.

It's a question of trust. You hope they read the journals and keep up to date, but you never know. [ IP F]

Most important, is that they are medically qualified. [ IP S]

3.49 Although good communication had been identified as being important, a number of people stated that it was more important for them that the medical staff that treated them should have sound clinical skills and experience over good communication skill. However, some patients gave examples where clinical care, or staff did not appear to have the knowledge or skills required.

As long as they're competent I don't care about anything else. [ IP E]

Gave me a whole body scan for a problem with my foot which I thought was the idea of an absolute madman, just ridiculous and what a waste of NHS funds. [ LTC E]

3.50 People also identified the diagnosis of a condition as being crucial and how reliant they were on medical staff to use their expertise to make the right diagnosis. Several people were quite upset to experience delays or errors in being given their diagnosis. For most patients, getting their diagnosis was quite upsetting for them and their family.

I got treated for sciatica for a couple of years and it turned out to be cancer. It was a secondary from breast cancer I had 11 years before. If I could find out that this is common from the internet, how come the doctors didn't know? [ LTC E]

Nightmare - diagnosed in Nottingham, referred to Guy's and Thomas's and then when I moved here they refused to accept that diagnosis. Now after 3 years, they have accepted the diagnosis. [ LTC B]

3.51 The issue of pain management was highlighted by a number of people as being a clinical area where improvements could be made.

The doctor didn't indicate whether they could give me stronger painkillers, so all night long I was in pain until the doctors came back next day. [ IP E]

I was meant to see the pain management team and I'm still waiting. [ IP F]

3.52 Although most of the people felt that they were receiving the best available care and treatment, several people with long-term conditions were concerned that the most up-to-date care and treatment was not always available for them.

Concerns - you read leaflets about advances and when you bring it up they say oh we don't use that even though it's thought to have a much better effect, so not sure I'm getting the best treatment. [ LTC M]

Continuity and coordination of care

3.53 Many of the concerns that patients had about their care and treatment were related to continuity of care and the coordination of care at different times of their hospital stay and between different staff. All of the people who attend focus groups stated a preference for seeing the same doctors and nurses about their care and treatment throughout for that condition or illness if possible. This was the case for patients seeing their GP, those in hospital as an inpatient, patients going back for a follow-up appointment and particularly for patients that have been admitted to hospital often for their condition. Seeing the same person was seen as important, both because of their understanding of the condition and also for the personal relationships that could be built up. Some patients had seen the same professional for a long period and this was much appreciated. However, some patients have been frustrated to see different members of staff at different visits, who they didn't think had the same understanding of their condition and who they didn't have the same personal relationship with. It was seen as less important to see the same nurses, although continuity of staff was highlighted by several patients.

All the main doctors I have seen since my childhood and I still see them which is great. [ LTC E]

I've been to the diabetic clinic and every time I go I see a different doctor, some that I've never seen before. Some are that are absolutely excellent and some that simply don't understand what I'm saying to them and I find that quite frustrating as they're not understanding.. But the past 2 times I've had the same lovely doctor and he has understood and it's been very nice. [ LTC E]

At the moment I've not seen the same person twice at hospital. [ IP E]

3.54 Seeing different doctors, for some people was puzzling, others saw it as only being for the benefit of the staff and not the patients and several noted that a lot of time had to be spent with new doctors in explaining details of their medical history.

I couldn't understand that you go to see a total stranger. Saw same consultants for years, surgeon did my operation a years ago and I've never seen him since. [ LTC E]

I see this process of seeing a different person every time a pain to be honest. Seeing a different person every time is not to my benefit it's to the benefit of the hospital really. [ IP S]

3.55 A number of people expressed their frustration at the lack of communication between staff with key information not being passed on or recorded in the medical records. Poor coordination was a particular worry for some of the hospital inpatients. Two patients gave examples of where poor coordination could have resulted in medical mistakes being made.

I'm allergic to some of the medication and find I had to say it to the nurses every time and they said it's not on your medical records, but I know that it is on the records because I've told them every time. [ IP E]

I was admitted as an emergency. The doctor was attending me and taking a lot of tests but when I arrived to the ward they changed the doctor and he didn't take any further action, there was no sequence and the attitude was very different. I wanted to see the same doctor again. I was very worried because it was a head injury and I thought I might die. [ IP E]

3.56 Because of their condition and treatment, a number of the patients received care from different hospitals and different healthcare professionals at different times. Several of them became frustrated and concerned at the lack of communication and coordination between different professionals, sometimes as a result of poor IT systems. Patients also highlighted that communication between hospitals in the same Health Board was sometimes poor. Several patients noted that the staff were not helped by the fact that the computer systems at different hospitals do not communicate with each other.

Co-ordination from different places is rubbish. [ IP F]

Couldn't get blood result - went to the GP, nothing from the hospital in about 6 months - the GPs haven't received anything, not from the last check-up or the one before it. [ LTC B]

It's non-existent. There are sometimes arguments between Hairmyres and the Beatson. [ LTC M]

3.57 People were also concerned that information also took a long time to get from the hospital to their GP. Another wondered why electronic methods are not used more. However, one patient from a rural area particularly appreciated the efforts of staff to organise all his appointments for the same day.

There's a discharge letter that goes to the GP. I left hospital three weeks ago and yesterday the GP hadn't received that - it goes out by ordinary post. [ LTC B]

We need joined-up medicine and they don't talk to each other. I don't understand why when you leave hospital, things are sent to the GP by post and get caught up with the Christmas post rather than sending electronically. [ IP S]

3.58 People that had a lot of contact with NHS services sometimes became tired of having to explain over and again to staff about their condition and possible side-effects of medications.

Taking warfarin for 22 years, can't tell you how often I have to tell people that I shouldn't be given aspirin as well. [ LTC E]

Also reading the notes - they don't read notes, no central base of data. Explain to ambulance people what my allergies are, then the A&E people, then the ward staff. [ LTC B]

3.59 A particular problem noted by several of the patients was that the medical records or test results were sometimes mislaid.

BDG lost my notes in August. [ LTC B]

When I go to hospital they haven't got my notes so they write it up on post-it notes to add on later. [ LTC B]

3.60 Being given inaccurate or conflicting information undermined some of the patients' confidence in the care they received. One participant was very concerned that they had mistaken her for another patient, and another became so concerned over a number of mistakes being made over her medication that she arranged for emergency care to be carried out by her GP at home. Another lost confidence in their care and treatment as a result of conflicting advice. One patient noted that his confidence had been shaken by the staff saying different things.

In May I was told I wasn't monitoring my diabetes very well. Well I don't have diabetes and they then discovered that it was someone else's blood results. It was a guy called James, my name is Jane. Their communication is appalling. That was at the Western. [ LTC E]

Now I remain at home if I have an episode, and my GP looks after me so I don't get the wrong medications even if I'm housebound for 6 weeks that's safer. [ LTC B]

They don't always sing from the same hymn book - I was prescribed pain killers by one doctor and then another one phoned me up to ask if I knew they were highly addictive and did I really want to be taking them? [ LTC M]

3.61 Some of the people that were admitted to hospital from the waiting list found that the information they had been given on what would happen when they arrived at the hospital was inaccurate. For example someone advised to arrive at the hospital early one morning wasn't seen as soon as they were told, this causing then some difficulties later in the day because of their diabetes. Another patient who was told they would have to wait a long time for their bed was seen much sooner than expected.

When I got to the admissions lounge they said there wasn't a bed, I was still there at 1.30 (5 hours) and I had to be in theatre at 2 o'clock. If it was planned there should have been a bed available. I was rather annoyed as I had to get someone to bring me through, that really did annoy me. I had nothing to eat between 9 am and as a diabetic that caused me some problems. [ IP F]

When the bed was available it was all a bit of a rush and I wasn't really ready to be honest with you. [ IP S ]

3.62 Several patients were given too little warning of when they would be admitted, with one patient from Stornoway given to little notice of her appointment. Several patients also were frustrated about the lack of planning that went into their care. One patient felt that the staff were not active enough in treating him.

I never ever felt that there was a plan. I would like to have been told what's happening and what's expected and that every day or two. [ IP E]

When I had chronic pain, it was never clear to me who should be the lead in that - the consultant, my GP or me? [ IP S]

3.63 The views on shared-decision making were split between those that wanted to leave the decisions to the medical staff and those that wanted to be more involved in their own decisions.

It's all well and good but sometimes I just don't feel well enough to look after myself and that's when I need help. [ IP E]

My husband completely goes along with the medical people, but I won't stand for that. [ LTC B]

3.64 For patients that had been a hospital inpatient, the smooth coordination of their discharge from hospital was particularly important to them. For most patients, their discharge from hospital was relatively well organised, with several patients describing being given a care package. However, for some it wasn't as seamless. Some patients had difficulty getting the transport they needed to get home. One patient from Stornoway was irritated to be asked to go to Glasgow for what appeared to be an unnecessary follow-up appointment.

They did a care package for me to do with the pacemaker. That was brilliant. [ IP S]

…try to get you out as quick as possible, and then all the follow up was organised for me back home. [ IP E]

Discharge - communication is dreadful, don't get information sent to GPs, social workers, etc. [ IP S]

Other issues

3.65 One theme that emerged from the inpatient and long-term conditions groups was the concern that some patients had over private sector involvement in healthcare.

From a political point of view, I'm very much against attempts to privatise the NHS, totally opposed to that. NHS has to be an entity, has to sit together. [ IP E]

Deterioration in cleanliness came when they brought in private contractors. Used to be spotless, not now. [ IP E]

3.66 One patient related the high costs of buying toiletries at the hospital to the hospital being owned by a private company.

Even the price of things in that hospital, it's ridiculous. Just like personal things from the shop, it's ridiculous. I had to wait 3 days for someone to bring me in some cleaning products and stuff, and added to the parking it's just too much and then you're bored and you want to watch television and that's more money. [ IP E]

3.67 Outside of the NHS, patient support groups were very important for many of the patients.

Once a month I go to a group and they tell me about new drugs on the market. [ LTC B]

The surgeon suggested I looked at the Dystonia Website from there found local support groups. There was a specialist nurse who was brilliant. [ LTC M]

The Haven - have never left, amazing care place, everything I needed, nurse, counselling, therapy, it's wonderful. It's for anyone with a life limiting illness, MS, MND, and PD. See same people going in, all meet up and discuss problem, or not. Open to anyone. [ LTC M]

3.68 Although the focus groups and interviews focused on the issues that patients and users of the NHS felt could improved, most of the patients were also very keen to express the high regard that they felt for the NHS. Several of the patients described that they were thankful or fortunate to have an NHS, and one that we'd be in a fine predicament without the NHS. Two patients gave examples of how grateful they were that NHS staff had kept them alive in an emergency. Several patients made comparisons to how they perceived the NHS in relation to healthcare provided in other countries. There was also agreement that there were more good things than bad about the NHS. Many of the patients noted that the NHS being free at the point of delivery was something than was important to them. However, one patient commented that although they saw a lot more pluses than minuses, it was the one minus that people remember.

The main thing for me is they took me from an ambulance and kept me alive when I could have died.[ IPE]

I was unconscious with Meningitis and my family said they were brilliant in ITU. [ IPE]

We get a health service that is free, a person in Chile and the poor people in Chile have no NHS, there is no provision for NHS at all. We're really really lucky with what we've got. We're complaining, we don't know how fortunate we are. [ LTC1]

3.69 Several patients welcomed the idea of having an opportunity to feedback the good and bad things about their care when they leave hospital. Another supported the idea but sounded a note of caution.

A questionnaire at the end of your stay would be good, like a consumer feedback as it where. I think that's a great idea and that's your opportunity to say what's good and what's needing improved. [ LTC M].

They need feedback, but whether they act on it, well that's another thing. [ LTC M]

Ranking Issues Exercise

3.70 As part of each focus-group we asked patients to take part in a card-sort exercise. On each of 25-30 cards was an issue that had been highlighted in previous research as being important to patients. We asked patients to organise the cards into three groups - 1 very important, 2 fairly important and 3 least important.

We have analysed the results of the card-sort and have identified the highest and lowest 5 ranked items for inpatients, long-term conditions and GP services. Although only a relatively small number of patients participated in the card-sort the results do compare with similar published ranking exercises.

In general terms, inpatients rate aspects related to their immediate clinical care as more important than issues related to the environment, so the most important issues included doctors knowing enough about the patient's condition and treatment, staff cleaning hands, confidence in doctors, being given the best treatment and being told risks and benefits of treatment. Items ranked as least important including car-parking, noise at night, choice of hospital, travelling time to hospital, use of mobile phones in hospital. See table 3.1.

For people with a long-term condition items ranked as most important were similarly related to clinical care - getting a diagnosis as soon as possible, having as much information as needed, seeing doctors who are experts, having the best available treatment. Items ranked as least important were about emotional support, healthy lifestyle advice, support for friends and family and being seen on time. See table 3.2.

For people using GP services, again, items ranked as most important were generally related to medical care, including - the doctor giving clear explanations of treatment, being open with patients, confidence in doctors, getting the best treatment available. Lower ranked items were mainly about health advice - on contraception, safer sex, healthy alcohol intake and smoking cessation. See table 3.3.

Table 3.1 Most important and least important items for inpatients

Table 3.2 Most important and least important items for people with a long-term condition

Table 3.3 Most important and least important items regarding GP services

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