METHODS

10 000 adults in Grampian were randomly selected from the Community Health Index (see box 1). In October 2002 they were sent a letter from the local Caldicott Guardian (box 1) asking for their consent to be sent a questionnaire either by post or electronically, and for their email address if they had one. Those who responded to this letter and gave consent were sent either a postal questionnaire or an email with instructions for accessing an online questionnaire, according to the study protocol. Regulations designed to protect individual privacy meant we could not re-contact those who did not reply to the initial letter. One reminder was sent to those who consented to receive a questionnaire but did not return it within 3 weeks.

The questionnaire opened with a description of three systems by which services users could feed back their views to the NHS: patient representatives; NHS telephone comments line; and NHS feedback website (box 2). None of these is currently in routine use across NHS Scotland, but policy makers were considering them when we developed the questionnaire and they might be considered by the healthcare providers who are now required to enable people to express their views about their services. The questionnaire asked respondents whether they thought these systems would be helpful for particular purposes, which they would be most likely to use if they had an important concern about their health care, and why. It then presented three brief scenarios (box 2) and asked respondents to indicate, for each, which of a range of actions on their part, including the three systems described, would be most likely to lead to “something getting done” about their views or concerns, and which they would be most likely to do and why. The scenarios were based on accounts given by recent health service users during interviews conducted by Grampian Local Health Council. They were simplified to ensure most people could relate to them.

We used SPSS to calculate frequency statistics and compare the distributions of quantitative responses across age and sex groups. Analysis of variance was used for continuous data and the χ² test for categorical data. A significance level of 5% was adopted and 95% confidence intervals were calculated where appropriate.

Free text responses were imported into Microsoft Excel tables and organised according to the questions and answers to which they related. Two researchers analysed the responses and generated categorisations for these independently before agreeing what the main types of response were. A third researcher read the responses and confirmed the appropriateness of the response types identified. Responses made on postal and electronic questionnaires were analysed together.

RESULTS

A total of 2449 people (24%) replied to the initial letter and gave consent to receive questionnaires; 1951 (80% of those sent questionnaires) responded to the survey. The mean (SD) self-reported age of respondents was 51 (15.5) years, range 18–90 years; 1110 (59%) were women and 810 (43%) were working full time. The respondent group was slightly older and contained more women than the initial sample of 10 000.

General views about the three proposed feedback mechanisms

In response to general questions about the three proposed feedback mechanisms, over 80% of respondents were generally optimistic about the usefulness of patient representatives, although just over 20% (n = 309; 95% CI 20% to 24%) thought these would be a waste of NHS money. Fewer people were enthusiastic about an NHS telephone comments line or an NHS feedback website, and over a third of respondents thought these would be a waste of NHS money (table 1). When asked which (or none) they would use to let the NHS know if they had an important concern about their health care, about 60% (n = 1130; 95% CI 58% to 62%) said they would use a patient representative. Older respondents were more likely to prefer a patient representative than younger people. The mean (SD) age of those choosing a patient representative was 52.2 (15.3) years compared with 42.0 (12.0) years for those choosing the NHS feedback website and 49.3 (16.1) years for those choosing the NHS telephone comments line (p<0.01).

Three hundred and twelve respondents (17%, 95% CI 15% to 18%) said they would not use any of the three proposed structures to let the NHS know if they had an important concern about their health care. They gave two main types of reason. Firstly, they expressed preferences for talking or writing directly to the staff or managers of the healthcare facility concerned (at least in the first instance) and suggested that the proposed new feedback mechanisms were unnecessary complications. For example:

• “Would be more red tape, of which there is more than enough already.”

• “All of the above seem to distance the patient from medical care or doctor.”

• “They take up valuable time that could be put to better use.”

Secondly, they expressed a lack of confidence in the responsiveness of the NHS, for example:

• “Would any notice be taken at all?”

• “No one listens.”

• “Because no one listens to you anyway, or they nod politely and sympathise with you and then ignore every word you’ve said.”

• “I doubt if any of the above would have the clout to make any difference.”

• “The powers that be are only interested in their budgets and cost cutting—not patients.”

Preferences for methods of feedback in the different scenarios

For scenario 1, 755 people (42%, 95% CI 40% to 44%) thought that contacting a patient representative would be most likely to lead to something getting done about their good ideas for improving a clinic. The next most popular strategies were writing a letter to the clinic manager and contacting clinic staff (table 2).

Contacting a patient representative was also the most popular course of action for scenario 2, and was chosen by 674 people (36%, 95% CI 34% to 38%). More people favoured contacting ward staff about inadequate care and attention during a hospital stay than favoured contacting clinic staff with ideas for improving the clinic.

For scenario 3, most people thought they would be most likely to get something done about a GP not making a hospital referral that they wanted if they talked to another GP in the practice (n = 965 (51%, 95% CI 49% to 53%)) or to the same GP again (n = 497 (26%, 95% CI 24% to 28%)). Patient representatives remained the next most popular course of action.

Most people would apparently prefer to use different routes to communicate their views about different issues. Only 318 (16%, 95% CI 15% to 18%) selected the same course of action for all three scenarios. Over half of these (n = 163 (9%, 95% CI 8% to 10%) chose to contact a patient representative each time.

Consistent with the responses to the general questions about the three feedback systems, the people who chose to use a patient representative were on average older than those who chose an NHS feedback website.

Reasons for being more likely to use particular feedback routes

At least 85% of respondents answered questions about why they would be most likely to use the feedback routes they selected for particular scenarios.

Clinical staff

In general terms, contacting clinical staff was perceived by those who preferred this option as the most obvious, direct, and appropriate thing to do. Typical explanations included:

• “It is much better to speak to the people involved.”

• “It is more direct and does not involve a host of people.”

• “They are on the spot.”

• “Logical step in the first instance.”

The main reasons given for contacting clinic staff about a good idea for a clinic (scenario 1) were that these people knew the clinic and its users; were best placed to assess the appropriateness of the idea; were “on the spot” and easy to contact; could be spoken with directly and personally; and would be motivated to improve the clinic. Some people suggested they would be able to implement improvements, but a few wondered whether managers would be more readily able to implement change. Typical statements were:

• “Clinic staff would understand best what I was talking about.”

• “You are talking directly to the people that can implement the idea.”

Similar reasons were given for contacting the person in charge of a ward with a concern about hospital care (scenario 2). This person was perceived to be close to the source of the problem; responsible for dealing with the problem; able to recognise the context of the concern and provide an explanation; and well placed to address the problem quickly and effectively. Some respondents said that contacting this person was the right thing to do, at least in the first instance, but several noted that they would turn to other approaches if they did not get satisfaction. Responses included:

• “It is their job to see that everything goes well.”

• “Hopefully the person in charge of ward can act and improve the care provided.”

• “Because if the problem is tackled at source then it can be nipped in the bud and eliminated.”

• “It only seems fair to speak to the person who is in charge of the problem encountered—otherwise it comes across as a ‘formal’ complaint.”

• “Start with the person in charge of ward. If no positive feedback, take it further (ie patient representative).”

In scenario 3 those people who reported being most likely to talk to the GP again explained that GPs could not get everything right first time; they would be keen to “try again” to explain the problem and their concern; they had a good relationship with and confidence in their GP; and they would be reluctant to “go behind the GP’s back”. Many respondents stressed that going back to their GP would be their first course of action and that if the matter was not resolved they would do something else.

• “I would feel it important to let the doctor be clear on my concerns and why.”

• “I need to give the GP another chance to sort things out before contacting the patient representative. Maybe I didn’t give all the details the first time or the GP didn’t understand how worried I was.”

• “GPs don’t always know what is wrong. Sometimes it can take several visits to get to the root of a problem.”

• “I feel I can trust my GP and would discuss my concerns with him.”

• “Most problems can be sorted out by honest dialogue between patient and GP.”

• “My GP is excellent and if you have a concern he will listen to you.”

• “GP would appreciate concerns if made aware of them.”

• “… If that does not yield a satisfactory outcome, then ...”

Writing to managers

The main reasons for writing to managers were that managers are ultimately responsible for services, are obliged to respond to concerns, and have the power to secure changes. Some saw no point in sending their idea or concern on a meandering route: they might as well take it directly to the top. Some people who preferred this option focused on the fact that it involved putting their views in writing, which they thought allowed them to express themselves better and would be more likely to lead to a response. For example:

• “A strongly worded letter often gets a point across more effectively.”

• “The direct approach—all other things are a waste of money.”

• “It must be the manager’s job.”

• “This is the person in a position to do something.”

• “I think the manager would be compelled to act on the letter and acknowledge my concerns.”

• “Important for management/decision makers to be made aware of problems/issues as they have influence to implement changes.”

• “The manager may take direct action. The ward staff may take it personally as an indication of a poorly run ward rather than lack of resources.” (scenario 2)

• “I’ve tried it and had positive feedback.”

Patient representatives

Common reasons for choosing to use a patient representative included wanting direct, face to face, personal discussions with people who were familiar with and influential within the NHS system, who could be “independent” and “objective” but who were there primarily for patients, and whose job it was to listen to and pass on patients’ views and help ensure appropriate action was taken. Some people thought patient representatives would be easy to identify and talk to, and would provide them with continuity of support and feedback on what was being done about their views. Some suggested they could help them express their views effectively and appropriately to the right people.

Some people preferred to use patient representatives because clinical staff were too busy, had other priorities, and might react defensively to patients’ suggestions or expressions of concern. Some said they would be less intimidated about talking to a patient representative than to clinical staff.

The perceived effectiveness of patient representatives was a recurring theme. Some people thought there was more chance with patient representatives than with other systems that they would be listened to, understood, given explanations, and kept informed, and that their concerns would be followed through. Some people seemed willing to talk to a patient representative when they had no confidence that other feedback systems would have any effect. For example:

• “Easier to discuss ideas face to face. Letters, forms, telephone calls are all less personal and increase sense of distance and bureaucracy.”

• “Direct personal contact with someone who can be effective.”

• “Patient representative is a human point of contact essential for talking out a problem, concern or idea.”

• “I feel that by talking directly to someone whose job is the welfare of patients, the ideas/concerns would be acted on more efficiently and independently.”

• “It would be easier to speak to someone working for the patients.”

• “For personal and confidential approach, and could be anonymous for those who wish to avoid confrontation.”

• “I feel that the patient representative would be better at putting my suggestions forward.”

• “I would think that they can talk in a professional way to the right people.”

• “I would feel as though my views would be heard better and I wouldn’t be wasting staff time.”

• “Clinic staff, clinic manager etc. more likely to be defensive, dismissive, excuse-seeking. I would go for someone likely to be forceful and independent.”

• “It is better to deal with the problem on neutral ground so that it can be dealt with effectively, and also to avoid causing friction or conflict among the people involved. The point of the exercise is to improve services, not to set patients against medical staff.”

• “I think that my suggestions would be less likely to be ‘lost’ in the system.”

• “A representative would probably get you a better explanation.”

• “Hopefully a patient representative would be able to weigh up both sides of the situation, not just the hospital’s.”

• “If there was a patient representative especially for patients’ concerns I would be more likely to air my views.”

• “This (scenario 2) actually happened to me… I felt the care I received was less than acceptable (in hospital), there was no one to complain to, when I mentioned it to the GP he was sorry this had happened, which was of no help to me at all. At the time I was too ill to be strong enough to argue the point.”

NHS feedback forms

People who preferred NHS feedback forms thought these would be effective because they allowed ideas and concerns to be conveyed “in writing” (which made them less likely to be ignored), because the very existence of the forms suggested that patients’ views were welcomed, because the NHS was committed to respond to them, or because they had positive experiences of using them (a “Treble C” form for comments, compliments, and complaints is available from all services in NHS Grampian). People said feedback forms were convenient and easy to use, and allowed them to communicate concerns and complaints without getting embarrassed or having to confront clinical staff.

• “Quick and easy.”

• “If comments put in writing then have to be dealt with.”

• “If a form has been sent out, then suggestions are being asked for.”

• “It is more likely to be official and less likely to get lost.”

• “I would not be confident enough to approach anyone, but I will fill in forms.”

• “Not identified: fear of trouble maker label if I have to go back in.”

• “The NHS feedback form would be the appropriate thing to complete but speaking to a patient representative would be more reassuring.”

• “A feedback form for minor concerns, but if I had a major grievance I would write to a manager/patient representative.”

NHS telephone comments line

People who favoured this explained it was accessible to most people and would be easy and convenient to use; they could do it at any time. It would allow them to have a direct personal conversation with someone who could do something about their ideas or concerns without requiring them to talk face to face with the clinical care staff associated with their concerns. Some people said they would be better able to get their points across by speaking rather than writing.

• “Easiest method and will be able to get some feedback.”

• “This would be a good way to speak personally to a staff member who would have time to listen to my views.”

• “I can speak my thoughts much more clearly than writing them. Depending on situation I would probably like it to be anonymous.”

• “The telephone line would provide anonymity. It is hard to complain knowing that someone will suffer at the other end (scenario 2).”

NHS feedback website

The most frequently cited reasons for preferring to use an NHS feedback website were ease, convenience, and speed. Other reasons included: being able to take time to think what to say and communicate it clearly; a belief that there would be an electronic record of the communication; the avoidance of direct confrontation with clinical staff or managers; preservation of anonymity; and a belief that the system would not waste valuable NHS staff time.

• “For me, this would be the easiest and simplest way.”

• “Quick, easy, and can express concerns in own words.”

• “Ease of use, relatively anonymous.”

• “Easier to describe in writing. Can get confirmation the comments have been sent.”

• “It is easier to put your thoughts into writing and you can get a quicker response over the internet.”

• “Quick and easy for me, and hopefully for any NHS staff who have to deal with the website. Why stretch your resources further?”

Doing nothing

Reasons for doing nothing in scenario 1 were similar to those reported above for the general questions about the three feedback mechanisms. In relation to scenario 2, a few people explained that they had been put off by their previous experiences of trying to report a similar concern. For example:

• “I did complain to the person in charge of the ward. She did listen but did nothing.”

• “After a personal experience… I did complain to the nurse in charge, I was made to feel that I had no right to complain and that everyone covered for everyone else. I felt that no matter who I complained to it would not have mattered. I felt very traumatised by the whole experience and still feel it would not matter what kind of procedure was put in place, complaints would still not be taken seriously.”

• “From past experience medical staff close ranks and become defensive.”

• “After a recent short stay in hospital I was so appalled by my treatment I asked to be pointed in the right direction for complaints and got nowhere, giving up and hoping to go privately in the future!”

Some people also expressed reluctance to report a concern because they thought this would exacerbate problems or lead to individual ward staff being blamed or punished for problems created by staff shortages. For example:

• “Conscious of being critical of staff who are over worked and a system that has already received a lot of criticism.”

• “Feel guilty about complaining about NHS services as I know how under-resourced service is. Concerned that nurses concerned would get into trouble—when it is not their fault but the system’s lack of resources.”

• “As it is not the nurses’ fault that they are very busy and obviously short staffed and underpaid, and I do not want anyone to get into trouble and I did not think that it would have made any difference anyway.”

• “To complain would put more pressure on nurses, not less.”

DISCUSSION

Summary of main findings

People varied in their judgements about the likely effectiveness of different ways of communicating their concerns, ideas, and views to the NHS. Most would prefer either to contact a patient representative, contact clinical staff (especially GPs), or write to the manager of the relevant healthcare provider organisation. A few would prefer to use a dedicated telephone or web based feedback service, but over a third of respondents thought these would be a waste of NHS money.

Individuals’ preferences for different feedback mechanisms varied when different kinds of situation were considered. However, people’s reasons for favouring particular mechanisms included their judgements that these would be easy to access, would result in them being listened to and kept informed, would lead to appropriate action being taken and health services being improved for other people, and would not waste NHS staff time and resources. Some people preferred mechanisms that would allow them to remain anonymous—especially if they wanted to raise concerns. Some people would hesitate to use any feedback mechanisms because they were not convinced that their views would be listened to or acted upon however they were communicated, or because they thought individual staff might be unfairly penalised for any problems they reported.

Strengths and weaknesses of this study

Our survey sample was large and population based but had a low response rate at the initial consent stage before questionnaires were sent out (Angus et al, in preparation). Our final respondent group contained fewer young adults and men than the population from which it was drawn, and responses did vary across age and sex groups. Given the topic of the questionnaire, respondents are likely to have been more willing to engage in discussions about the NHS (for either negative or positive reasons) than non-respondents. Although we cannot tell how those who did not reply to the initial letter might have responded, our survey still captured the views of almost 2000 respondents, and the free text responses strongly suggest that these included people with a wide range of opinions about their recent experiences of NHS use.

We tried to keep our descriptions of scenarios and feedback mechanisms brief, and it is possible that respondents developed varied understandings of these. However, over 85% of respondents gave some explanation of why they favoured particular feedback mechanisms, and their explanations did not reveal any significant misunderstandings.

In a short questionnaire we asked only a limited number of questions. In particular, we sought peoples’ reasons for preferring one feedback system above others but did not systematically explore their views about different aspects of each system. Our questions about what people would do in particular scenarios were hypothetical.

Relationship to other studies

Our finding that some people were reluctant to express concerns openly because they anticipated defensive or hostile reactions from staff or feared an adverse impact on their future care is consistent with those from a recent review of the NHS Complaints System,¹⁴ as is our finding of scepticism about the extent to which service users’ concerns and views would be acted on if expressed.

Meaning of the study

The reasons people gave for saying they were most likely to use particular feedback mechanisms generally confirm that people want to be confident that, if they express their views about services, these will be taken seriously, addressed quickly and effectively, and used to inform improvements in service delivery. The reluctance that some people expressed to report concerns that they attributed to general problems with the healthcare system but feared might be blamed on individuals endorses the view that is reflected in current health policies in the UK, US, and Australia (among others) that a shift away from “blame cultures” may facilitate quality improvement. However, such culture shifts will need to become evident to service users if they are to enhance their willingness to feedback concerns to health systems.

Many people want to communicate directly and honestly with their own healthcare providers in the first instance, especially about diagnostic and treatment decisions (scenario 3). If concerns arise about the quality of their health care, most prefer them to be dealt with locally. However, substantial proportions of people are reluctant to approach their healthcare providers about perceived shortfalls in care, feeling embarrassed or intimidated about doing so and fearing that their future care may be adversely affected.

The strong support for the patient representative role that we described suggests a high proportion of service users would be willing to provide feedback via a person with the specific remit and capacity to listen to patients’ views and work to improve health services. Such a person could provide a helpful interface between the service user and local healthcare staff in some circumstances.

Each of the feedback systems we suggested was preferred by some people for each scenario. At face value this could be taken to suggest that the provision of a range of feedback options would be useful to help cater for people with differing communication needs and preferences. However, it could be very costly to operate a range of feedback mechanisms and ensure that users’ views are promptly and appropriately dealt with however they are received, so some prioritisation is likely to be needed.

Different systems for receiving and dealing with “spontaneous” feedback from service users might be better suited either to address individual concerns and local issues or to promote learning and change on a broader scale. For example, patient representatives should be well geared to provide prompt personal attention for those experiencing problems with their health care and to help initiate quality improvements at a local level. Centralised telephone and/or Internet based feedback systems might be less well effective for these but could more readily facilitate monitoring of trends in terms of issues that people feel strongly about, and the identification of types of concern that need dealing with across a whole system on the basis of aggregated data.

The range of preferences that we observed for different feedback systems might in part reflect variations in terms of the kinds of criteria respondents considered when thinking about their effectiveness. The questions we posed in relation to the scenarios asked people which of the feedback mechanisms they thought most likely to “lead to something getting done”. We did not attempt to quantify the extent to which people were focusing on something getting done for themselves (for example, a solution to or an apology for a particular problem that they experienced) or something getting done so that future service users would benefit (for example, a change to standard clinic operating procedures locally or nationally). However, some of the reasons people gave for preferring patient representatives suggested they were particularly keen to secure prompt personal attention and/or local action.

Our descriptions of an NHS telephone comments line and NHS feedback website did not explain where the staff who took messages via these would be located, nor exactly to whom the messages would be passed. People’s perceptions of how “close” these staff would be to the service they wanted to comment on might affect their willingness to use these mechanisms, and the types of issues and views they would consider reporting to them. Careful attention would need to be paid to publicity and information materials if these types of system were introduced, to ensure that people understood their purpose and developed realistic expectations about what they might deliver for them personally and for the health service more generally. Although some people might be keen to give quick feedback about their own experiences of health service use without needing a personal response, there is a danger that some might become disillusioned if they fed in concerns and were not told how their specific concern had been dealt with.

Feedback systems should obviously be well designed to fulfil the specific functions they are intended to serve within a particular healthcare system. Ideally, a healthcare system will include a range of complementary feedback systems that, between them, enable all service users to feed in their views in ways that suit them and allow those responsible for service delivery to learn and take action at all the relevant levels. Healthcare systems that use user experience surveys to provide aggregate data for identifying areas for improvement and generally monitoring service quality might find patient representative type systems, which facilitate the prompt resolution of individual concerns and some general improvements to local services, a more useful complementary means of receiving “spontaneous” feedback than centralised telephone or web based services.

Whatever feedback systems are introduced, the fact that a substantial minority of people in our survey expressed cynicism about the extent to which service users’ concerns and views were listened to and taken seriously should not be forgotten. Any “new” efforts and systems to enhance the responsiveness of health services may need to overcome the legacy of a history of poor responsiveness. They must clearly demonstrate their effectiveness in order to regain and retain public confidence.