A survey of 5,000 patients at a Scottish trust shows hospital experience is often uncomfortable, unco-ordinated, lacking privacy, alienating, noisy. Pat Straw and colleagues report

The NHS is probably unique in employing so many people deeply committed to providing the best possible standards of care to others.But we cannot assume that clinicians or managers systematically involve patients as equal partners or as 'experts', either in relation to their care or in the planning, development and delivery of services.Lothian University Hospitals trust in Edinburgh, one of the largest acute teaching trusts in the UK, decided to transform this situation in an ambitious programme, the first of its kind in the UK.

Trusts now have a legal and moral obligation to prove they are being clinically effective.

Put simply, this means doing the right thing at the right time for the right person in the right way, with an agreement between patients and staff about what constitutes 'right'.Crucially, trusts need to be able to provide evidence, preferably independent, that patients feel clinicians and managers are 'getting it right'. If patients'views and interests, as they see them, are not considered to be central to patient partnership, clinical effectiveness, clinical governance and quality improvement, then the NHS should ask why, and for whom, it is pursuing these agendas.

In many ways, patients know most about what does or does not work in hea lthcare. Because it is their bodies and their lives which are directly affected by illnesses, they are experts on the overall outcomes of treatment.Additionally, as they have personal experience of a whole range of care, both inside and outside hospital, they are also experts on the co-ordination of services.Listening to such expert witnesses to what we do will take us beyond improvement to innovation.

Getting the priorities right Following a two-year review of patient consultation methods in Europe and the US, LUNHT is now working with Picker Europe, a not-for-profit organisation, on a programme of organisational learning, driven by the priorities of patients (see panel, right).

The framework of the programme was created in groundbreaking work, originally started in 1988, by the Picker Institute at Harvard Medical School.The Edinburgh version is unique in Britain for several reasons.

Patients have determined the content of the questionnaires by being directly involved in their development from the beginning. In July 1999 former patients (adult inpatients, children, parents and new mothers) met with independent researchers, individually or in focus groups to talk freely about what mattered to them most while they were in hospital.Their emphasis was clearly on matters of clinical importance (for example, communication, co-ordination of care, continuity of care, information and education).

Consequently, the questionnaires ask patients about clinical care and treatment, not about non-clinical issues such as car parking.This is quite different to most 'satisfaction' surveys undertaken in the NHS, particularly at a local level.

Patients are asked to report what happened to them rather than to rate their feelings of satisfaction.

This provides unambiguous answers, about specific issues which can then be acted on, if necessary, by hospital staff.

Further, although the questionnaires are tailor-made, there are enough common questions to enable national and international benchmarking.

In October 1999,5,000 recently discharged adult inpatients, new mothers and parents of paediatric patients received a postal questionnaire, which achieved a very high response rate - 70 per cent.This random sample covered all the trust's main inpatient categories, including the national priority area of heart disease, across its 10 hospitals.This is important as it ensures the organisation moves forward as a whole system rather than as individual departments or services.

The survey is only one part of a coherent programme to improve care.The findings, contained in a series of reports relating to sites and specialties, are being fed into a structured change management programme.This is based on multidisciplinary teams across the trust, led by patients and patient services directors, who are all doctors.

The comprehensiveness of the programme is assured as surveys are being developed, covering cancer, diabetes and outpatients or day-cases, using the same methodology.

To complement the 'through the patient's eyes'approach, the trust has, with Picker, developed a survey of all 11,700 staff about their experiences of delivering care to patients.

The focus group work provided a wealth of rich and varied evidence about patients'experiences in the trust.

Although much of what was said was very positive, there are good reasons for giving examples of the more problematic aspects of care experienced, as we know that the issues raised can have a significant bearing on how well a patient progresses.

Respecting a patient's values and needs Studies have shown that patient involvement in decisionmaking and a feeling of control during an illness lead to better clinical outcomes.Only the patient can define his or her 'best interests'- for example, what constitutes acceptable risk, tolerable side-effects or quality of life worth preserving.

However, many patients from all age groups and women using maternity services described a sense of powerlessness and a feeling of vulnerability in hospital.As one adult patient explained: 'You have no power.You are in their hands.'

The experience and understanding of illness is also influenced by social and cultural factors such as ethnicity, social class, gender, age and education.

Maintaining some dignity and being treated with respect by staff mattered to patients' sense of wellbeing and confidence.Some patients found ward rounds by groups of doctors and medical students intimidating.Others found the lack of privacy for consultation and examination to be humiliating, and that it detracted from proper communication and treatment.

Co-ordination and integration of care When hospital staff appeared disorganised, if they contradicted each other or did not seem to know what they were doing, patients became extremely anxious or frustrated.Patients want to know who is in charge of their care and to see that members of the care team communicate effectively.

Numerous adult patients, as wel l as chi ldren and their parents, found it tiresome or, in one case, 'particularly depressing', to be asked exactly the same questions by a stream of different staff.But more important, perhaps, overall perceptions of competency and efficiency were found to be shaped by how wel l staff and serv ices appear to be coordinated.

The quality of information that patients were given, and the way it was communicated, caused much comment.

Individual patients often had different requirements relat ing to what they wanted Continued from page 25 to be told about their condition - and when.Some did not want to know too much, or felt overwhelmed by the amount of information given.At the other extreme, others felt they were not told enough, including a man who found it 'a wee bit strange' that nobody told him his prostate would be removed.

Women using maternity services felt they were left in limbo by a policy which stated that they would not be informed of test results if they proved negative.

Patients expected to have access to care at pre-arranged times, both when going into hospital and while they were there.One woman described an eight-hour wait for a bed as 'nerve-wracking', and other patients were worried when tests or therapy, supposed to be carried out on a certain day or at a specific time, never happened.Frequently, noone explained why patients had to wait for treatment they believed to be essential to their clinical progress.

Physical comfort One of the most disturbing aspects of illness is the physical discomfort and disability it usually brings.

Experiences of pain management varied greatly.Some patients had their pain well controlled throughout their stay, while others described having to be 'peeled off the ceiling'.One parent only found out by chance that her child was being given morphine, when she had assumed it was paracetamol.Food, heating and noise also played their part in preventing the best possible recovery, by mitigating against good nutrition and undisturbed sleep.

Psychological fears and anxieties about illness or treatment can be as debilitating as the physical effects, and patients need a relationship of confidence with staff who can support them.Those who looked to staff for emotional support and the opportunity to discuss their concerns were often disappointed.One described having to 'pin'a consultant to the bed to talk to him, and some, wanting more individual attention from nurses, believed that understaffing had been the main reason this did not happen. In contrast, others spoke very highly of a hospital chaplain always being on hand to relieve their worries.

Patients' families and friends are important providers of companionship and emotional support in hospital and are often important care givers when patients go home.They may also act as advocates or proxy decision-makers.They need to be treated as part of the care team.

However, relatives and friends did not always get the right information when they needed it, and sometimes received none at all.Parents of sick children, who stayed at their child's side for long periods, found it exhausting and complained of a lack of amenities for relatives.

The transition from hospital to home was often disconcerting as people were anxious about their ability to care for themselves or their families once out of hospital.

Some patients complained of a lack of information being passed to their GP and their families.Others found it hard to remember what advice they had been given in hospital.

For example, a mother described how she found it 'absolutely terrifying' to return home with her newborn baby.

Eight 'dimensions' of care The broad themes raised by recently discharged patients in Edinburgh were the same as those identified by Picker elsewhere in Europe and the US, encapsulating eight 'dimensions'of care that are important to patients, and important to good clinical outcomes.

Although themes are similar across countries, specific issues were raised by patients in Edinburgh that have been less apparent elsewhere.For example, some patients found that being 'shunted back and forth'between different wards compromised their continuity of care.Other patients were unhappy at being in mixed-sex wards or found the noise levels of ward life, particularly in Nightingale wards, to be unfamiliar and difficult to tolerate.Questions that explore these and other issues identified in the focus groups have been incorporated into the questionnaires.

This ambitious programme puts the patient at the heart of the trust's strategies for improvement and innovation in healthcare. It has been meticulously planned and developed, from having patients lead the design of questionnaires, through to pre-planning the use of results to change practice and culture.

At the official launch of the programme in September 1999, the approach was endorsed by Susan Deacon, minister for health in Scotland, who said: 'Giving patients more say in how they are treated is a central objective of the NHS in Scotland.We need a health service that cares as well as cures, that listens to patients and takes on board their experience of the NHS and the treatment they receive.This programme offers patients a way not just ofmaking their feelings known but ofmaking them count.'

Acting on the conviction that the key to more effective healthcare provision lies in understanding the patient's point of view, the partnership with Picker Europe is enabling the trust to gather robust and reliable information about patients'perceptions and experiences of care. It helps identify new ways to begin to be more responsive to patients'needs, and identify the fears and concerns of patients at a time of great change in healthcare delivery, nationally and locally.

For example, major changes are happening in Edinburgh as a result of the merger of all the acute trusts, a significant new build at the Western General and the construction of a new Royal Infirmary.The programme described will provide insights into the issues that patients think the health service should focus on. It will give the trust and its patients, as well as the NHS in general, a road map to guide improvements and measure progress along the way.

Learning to listen to patients Picker Europe's programme of organisational learning encompasses the following elements:

The involvement of patients in clinical care and management strategies is systematic and strategic, focusing on issues of clinical significance which patients say are important and which have a beneficial effect on clinical outcomes.

Strategic work across the agendas of patient partnership, clinical effectiveness, clinical governance and quality improvement is joined up by placing the patient actively in the centre.

Further development of these agendas is based on world-class research, using sound, validated methodological and statistical techniques.

The 'quality loop' is continuous - the programme starts with patients determining what questions to ask and moves to identifying, with patients and staff, what improvements can be made from the responses, before going on to re-measure progress.

Key points

A huge survey of inpatients' experience at a Scottish trust has revealed concerns about privacy, information giving, pain control and discharge arrangements.

Patients became anxious when hospital staff appeared to contradict each other.

Patients found it particularly depressing to be asked the same questions by a stream of different staff.

REFERENCES

1 Designed to Care. Scottish Office, 1997.

2 Berwick DM.The total customer relationship in healthcare: broadening the bandwidth. J of Quality Improvement 1997; 23.

3 Delbanco TL.Doctors and Patients: breaking down the walls.The Quality Letter for Healthcare Leaders.March 1995.

4 Bruster S, Jarman B, Bosanquet N, Weston D, Erens B, Delbanco TL.National survey of hospital patients.Brit Med J 1994; 309: 1542-9.

5 Gerteis M, Edgman-Levitan S, Daley J, Delbanco TL (eds). Through the Patient's Eyes: understanding and promoting patient-centred care .San Francisco: Jossey-Bass, 1993.

6 Eye on Patients: a report from the American Hospital Association and the Picker Institute.American Hospital Association/ Picker Institute, 1997.

Pat Straw is Picker programmes director for Lothian University Hospitals trust and quality manager for the Royal Infirmary of Edinburgh;

Steve Bruster is UK country manager, Nick Richards is project manager and Sarah-Jane Lilley is project researcher, Picker Europe.