What do patients want?

If users, not civil servants, had drawn up the Patient’s Charter, how would it be different? Christine Hogg and Jane Cowl investigated

The government launched citizens’ charters at the end of more than a decade of deteriorating public services. In the health service no additional resources accompanied the introduction of the Patient’s Charter and staff and users were not consulted. It has consequently met with widespread cynicism. The Patient’s Charter was bestowed on patients and imposed on NHS managers, in stark contrast to the user-initiated charters of the 1980s.

Few rights in health care are inalienable or enforceable in law — the criteria normally used to define a right. The Patient’s Charter outlined 10 ‘rights’ and nine national ‘standards’. Few of the ‘rights’ are new and many are so general that they offer little benefit to most patients. Inequalities in health care are not addressed in the charter and it reinforces a supermarket model inappropriate to health care.

Local charters were speedily introduced in 1991 and 1992, following central government instructions. The pace of implementation meant that staff did not always understand the full implications of the standards and patients were not informed. There was little scope for local priorities. Central monitoring was introduced for standards the government felt were important to voters, such as waiting times.

Waiting times do not figure in user-initiated charters and are not patients’ highest priority. But emphasis on waits has had unforeseen and damaging consequences. For example, clinical priorities are sometimes distorted when staff are pressurised to treat people with minor problems, rather than patients who need treatment more urgently but have been on the waiting list for a shorter length of time. Also, local efforts to keep waits below two years can mean that people are not put on waiting lists in the first place.¹ And quality may suffer when standards are unrealistic: if there is pressure to reduce the number of people waiting for a hip replacement, the purchaser is likely to shop around for the best deal which can mean that a unit with the least experience wins the contract.

In comparing the Patient’s Charter with user-initiated charters, we found that in general users are more concerned about:

the boundary between home and hospital and health and social care, where present charters concentrate on acute hospital care;
other services that affect their ability to cope with their illness, such as income, housing and child care;
access to services where using them may lead to discrimination and even a loss of civil rights;
the way the service is provided and whether autonomy is respected;
defining in detail what is meant by the general expression of goodwill in the charter.²

In Health Rights’ research, we looked in more detail at the rights and standards that are most important to users. This involved discussions with two groups of patients who have problems not addressed in government charters: people with chronic or recurrent pain and women who are HIV positive. Although there were some issues of particular concern to these groups (e.g. confidentiality for women with HIV), their experiences are shared by many others. If services are improved for those who experience most problems, other users will benefit.

The most fundamental concern for users is a reasonable standard of skill and care. But patients are normally only asked their views on organisational issues, not clinical ones. When measuring outcomes or setting priorities, patients and carers should be asked about the long-term effects of treatment.

The next most important concern was to be treated with respect, as an individual and an equal. If you are treated with respect, you will be given the information you want and services will be appropriate to your needs.

A theme in all of the discussions was the importance of recognising the experience and knowledge that patients and carers have and developing a ‘partnership’ in planning care.

So the second part of our study examined how managers and health professionals might move beyond the Patient’s Charter and look at how to involve users in the process of selecting, developing and monitoring standards. We found that in order for local charters to be effective, there are some general principles that should be observed:

The process by which standards are developed and how users are involved is more important than the list of standards or rights.
Charters need to be owned by the people who are expected to meet the standards — i.e. frontline staff. This has training implications.
Charters must be integrated with an overall programme for improving quality of care and be part of a strategy for consulting and involving users.

But in a climate where cuts in services are an everyday occurrence, do the commitment, patience and resources exist to go beyond the Patient’s Charter?