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Establishing a user group in continence care

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VOL: 98, ISSUE: 17, PAGE NO: 60

Ray Addison, RN, FETC, Cert.H.Ed, BSc, is nurse consultant, bladder and bowel dysfunction, Mayday Healthcare NHS Trust, Croydon, South London, honorary nurse consultant to The UK Continence Foundation and honorary senior lecturer, St George's Medical School and Kingston University

The Department of Health has produced a number of publications that support their current vision of consumer involvement in all levels and aspects of health care. In The NHS Plan (Department of Health, 2000a), chapter 10 focuses on user involvement in care reflecting this vision. Good Practice in Continence Services (Department of Health, 2000b) made three simple statements with sweeping implications relating to user involvement in continence services:

The Department of Health has produced a number of publications that support their current vision of consumer involvement in all levels and aspects of health care. In The NHS Plan (Department of Health, 2000a), chapter 10 focuses on user involvement in care reflecting this vision. Good Practice in Continence Services (Department of Health, 2000b) made three simple statements with sweeping implications relating to user involvement in continence services:

- There is a lack of involvement of users;

- Users should be involved in planning, provision and audit of continence services;

- Users should be involved in all aspects of the service.

Pressure on continence services
From my own experience and consultations in ten UK centres during 2001, including Northern Ireland and Scotland, it was very rare to find user groups established and functioning as envisaged by Good Practice in Continence Services. This begs the questions as to what barriers exist and why user groups are not commonly established in continence care.

The answer is complex. Most continence services are community-led and focused, with a number subcontracting to acute and mental health trusts. The continuing changes in the NHS and particularly community trusts has led to a state of inertia, while service structures are redesigned and set in place in the forms of primary care trusts (PCTs). The climate has perhaps not been conducive to changes in continence care, which may have a low priority on agendas - with one exception: the cost of the pad budget.

Bladder and bowel dysfunction are very common health problems in our society. Perry et al (1999) found, in their cross sectional survey of people over 40 living in Leicester, that 28.6% of women and 16.7% of men has some form of urinary leakage. To meet these needs continence advisers have done their best to establish some form of service in most community and some acute trusts. However, this has clearly not been sufficient, as evidenced by the publication of government documents which identify sweeping visionary ideas to improve services even further. Continence services are overworked, overstretched and underresourced from both a facilities and a staffing perspective.

It is therefore not surprising that establishing a user group in continence care may be viewed with scepticism. Funding for the group, facilities to hold meetings, time in the busy working day all go against this initiative. As continence advisers are usually guardians of the pad budget, there may also be fear that users will be pad consumers who will come with an agenda of criticism. So, although current government policy describes a vision of consumerism in continence care, the reality is far removed from this.

User groups and support groups
Around the country there are a number of established support and user groups for continence care, but they are still few in number. It is important to remember that incontinence is a taboo subject and therefore sufferers may not openly share their problems.

Support groups are different from user groups and have fundamentally different roles. The principle of the support group is patient-focused and helps individuals with their own health needs; it is therefore directly and intentionally supportive. User groups, on the other hand, are service-focused and look at the wider issues affecting the service for all the consumers who use it. User groups are definitely not focused on the individual and their health care needs. User group members are there to improve the service and, if you consider all the government reports related to continence care, you cannot run a continence service without one.

User involvement and current health policy
So what do government reports actually say about user involvement in continence care? The Essence of Care (Department of Health, 2001) covered a number of core health care issues, of which continence was one, building on the content of the previous document, Good Practice in Continence Services (Department of Health, 2000b). In The Essence of Care there is a strong theme of consumer involvement, including the following:

- Health education;

- Setting up a user group for continence services;

- User group views to be involved in training programmes;

- The promotion of continence services to user groups and raising awareness by use of links with user groups;

- Staff training with user focus.

- Users must be involved in planning and evaluating services.

Setting up a user group
As a nurse consultant (one of only three in continence care in the UK) my role is to be innovative and, where possible, develop a model of an ideal continence service as envisaged by government. In November 2000 I decided to establish a user group for our continence service in Croydon, south London.

My first task was to convince staff working in the continence service that this was a positive initiative, although it appeared to be more change and more work. I also felt that terms of reference were needed for the group that carried trust approval. To this end, the director of nursing guided this part of the project with almost no objections. By December 2000 we had produced and gained approval for the terms of reference for our user group.

Recruiting the group
Our next dilemma was how to recruit a group. We felt we should look for patients who had teaching, computer and other skills that could help found our group, and this strategy worked. We held our first meeting in February 2001 with 14 patients attending.

Marketing of the group was also considered. Once we had recruited a small group of patients who agreed to support this venture we felt we could establish a programme of monthly meetings for a year and advertise the user group to all our consumers - about 1,400 patients in an average year. We redesigned our appointment card to become a leaflet containing details of our user group so that we could give this to all our patients. We were also aware that take-up of attendance at a user group was likely to be small, and after a year this proved this to be correct. Our group membership in November 2001 stood at 27, representing about 2% of our total consumers for one year.

Content of the meetings
At each meeting about two or three projects are presented to the group. The meetings are businesslike and the group decided that I should lead them. The group will either discuss the projects at the meeting or read and consider them at home for discussion the next time. Minutes are produced and circulated to group members and the chief executive, director of nursing and Incontact, the national self-help organisation for people with incontinence (address below). The user group also liked having meetings within the continence department, as it was familiar to them.

User group activities
Since the establishment of our group in February 2001 it is impressive to reflect on the achievements so far. The group has:

- Agreed the terms of reference;

- Reviewed an article on bladder health and trial without catheter;

- Reviewed and developed patient-learning programmes on intermittent self-catheterisation and self-usage of electrical stimulation therapy;

- Started to look at care pathways and core care plans related to bowel care;

- Consulted on our new patient classes and the prospectus;

- Reviewed health education leaflets on having a urodynamic study, fluid intake, cranberry juice therapy and coffee and caffeine;

- Reviewed booklets on 'you and your bowel' and 'electrical stimulation therapy';

- Consulted on a new referral protocol for patients with catheter-associated problems;

- Helped to develop our new patient-completed basic assessment and specialised continence assessment tools;

- Updated our cystitis assessment questionnaire and adapted and improved our nocturia chart;

- Helped in the development of our new appointment slip for the department and our health education directory, listing resources related to continence care available at local and national level;

- Helped in the development of teaching material about dignity and continence care.

All of these items mentioned are now endorsed by the user group, which adds a new dimension to material produced by the continence service.

Other activities
Patient members have represented our group at a conference in Derby organised by Incontact, a study day at Incontact headquarters about how to establish a user group, and at our newly established district-wide benchmarking catheter care forum. We have also presented our user group story to the London Region benchmarking group established by our assistant director of nursing for the London Region. Two members of our trust board have attended one meeting at the user group's invitation.

Our user group is now part of our service. It is accepted, viewed as non-threatening and very supportive. Users feel the group improves communication, is interesting, informative and positive. They also appreciate that it is about sharing and learning from each other. It enables members as consumers and develops the role of the expert patient. It is time well spent and extremely constructive.

The direct patient contact helps users to understand what the nurse consultant's role is. As an acute hospital-based continence service, which is unusual, we have shown that a user group can be established and function effectively. We have taken government vision and made it an effective reality and, by doing so, have enhanced our continence service.

Incontact, United House, North Road, London, N7 9DP, tel: 020 7700 7035

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