Saturday paediatric

nurse-led drop-in clinic proves successful - Childhood Diabetes

The rising incidence of childhood diabetes (Feltbower et al, 2000) and improved care of young people with diabetes have resulted in a mounting workload for paediatric diabetes specialist nurses, many of whom now care for more than the 70-100 children per WTE recommended by the RCN Working Party (1993). It is therefore important to find new ways of providing support to young people with diabetes, their families, friends and carers. This article describes a drop-in clinic that has proved particularly popular with adolescents with diabetes.

In recent years, information about diabetes has become much more readily available through the press and the Internet. Newspaper headlines and news items on such programmes as 'Tomorrow's World', stating 'Cure for diabetes,' 'Needle-free injections,' 'Islet cell transplants' or 'Pain-free blood testing', raise the expectations of young people with diabetes and their parents, only for them to find that these developments are many years away or not applicable to young children.

For some young people, this can have a catastrophic effect on how they feel about their diabetes; and when they discover that the 'cure' is not available they lose faith in their carers and medical team.

Information overload

At diagnosis, many young people with diabetes and/or their parents seek information from the Internet. However, this can provide them with more facts than they are ready to cope with, leading to greater anxiety at this very stressful time. The information may be confusing -- what families need to know is how diabetes will affect the child or young person now and in the future.

Although many have access to various diabetes-related websites and can obtain information on new developments, new products and problem solving, often they do not have sufficient knowledge to evaluate this information (Kelly et al, 2002).

As alternative methods of blood glucose monitoring and insulin administration become increasingly available, parents are eager to view and handle new equipment in order to find the most appropriate one for their child.

The combination of increasing numbers of young people diagnosed with diabetes and new developments in their care has put greater pressure on paediatric diabetes specialist nurses (PDSNs). Consequently, the opportunities for education and downloading of test results from the latest blood glucose meters may be limited.

When these are achievable, they do offer an opportunity to engage young people in discussion and feedback about the care of their diabetes, thereby providing the PDSN with the chance to develop the knowledge of the child and/or family. The ability to negotiate individual targets for care should narrow the gap between ideal and real self-management targets (Doherty et al, 2000).

Existing service

The Diabetes Home Care (DHC) service based at Birmingham Children's Hospital aims to meet the recommendations of the International Society for Paediatric and Adolescent Diabetes (ISPAD) Consensus Guidelines (2000), Audit Commission (2000) and the National Service Framework for Diabetes (Department of Health, 2001), by providing a 24-hour service 365 days a year, to support and educate the 390 children with diabetes in their care.

Children newly diagnosed with diabetes are managed entirely at home if they are fit and well on presentation. Support and education are provided in the home at injection times until the family is confident in the technique. The benefits of home support and how this can reduce readmission rates in the future are clearly described by Swift et al (1993).

Contact is maintained by telephone, to provide support and advice as necessary, and families are encouraged to use the 24-hour helpline if problems occur. Continuing support is provided in the home, with twice-yearly visits to discuss care and identify problems. The team also reviews the children with diabetes in the outpatient clinic three to four times a year.

Problems

Unfortunately, these contact periods are always busy and there is never enough time for staff to answer all the questions that the families may have. Also, some parents and young people are reluctant to ask questions at the clinic because, in their own words, 'we can see the staff are busy' or 'we would be keeping other patients waiting'. In Raleigh and Clifford's study (2002) some patients felt that they did not have enough time to discuss all their concerns with the nurse or doctor.

Although all this support is available to the families, there are frequently developments or news items that raise questions between routine contacts.

Before 1998, although the DHC office was accessible, the families of children with diabetes rarely used it as a drop-in facility; there were fewer than 100 visits a year to the department. In 1997 the hospital moved to a new site and the DHC office was relocated to a small self-contained area, with considerably more space.

Aims of the open access clinic

Following the move and because of the increasing workload, it was decided that the nursing team should provide a service with easy access for advice between routine contacts. The aim was to allow time for patients and/or parents to discuss diabetes management problem, and to obtain information on new equipment. The service would also allow time for downloading the test results from blood glucose meters and offer young people with diabetes and their families an opportunity to discuss queries about recent news items about diabetes.

The PDSNs routinely worked weekends and were regularly undertaking two home visits on Saturday mornings. It was decided that this time might be better utilised as an open access clinic for young people with diabetes and their parents -- not to replace routine outpatient appointments or home visits, but to complement them.

Introduction of the drop-in clinic

The family of every child with diabetes was notified in writing that a nurse-led clinic, for which no appointment was necessary, would be available every Saturday morning between 09:30 and 12:30. The young people and their families were also told about the drop-in clinic when they attended their routine outpatient clinic.

The Saturday morning nurse-led drop-in clinic was introduced in the autumn of 1998.

Outcomes

Initially, the young patients and their parents were encouraged to attend the drop-in clinic if they had specific questions when they attended their outpatient appointments. With this support they gradually adapted to the drop-in service.

Over the past 12 months there have been only two Saturdays when no-one has attended: one was a bank holiday weekend and the other was just before return to school in September. Attendance has varied from 0 to 9 children, parents or adolescents (average 3) each Saturday. As the families came to realise there was a PDSN available in the department, Saturday morning telephone calls increased dramatically, making it a very busy time for the nurse on duty.

Over the past 4 years, use of the DHC department has more than trebled. By 2000, visits to the department had risen to 388 a year, with 201 (52%) on Saturday mornings, and in 2001 there were 305 visits, with the same percentage on Saturday (Figure 1).

In the past year the drop-in service has been used by 37% of the families in the care of the Children's Hospital, and by some from the neighbouring City Hospital , which has a small number of children with diabetes who come under the care of one of the DHC nurses.

Reasons for attendance

There are many reasons why young people with diabetes and/or their parents or carers attend the drop-in clinic; some are more common than others. Table I lists some of the more common reasons.

Patients' and parents' views

The young people and their families have given various reasons for liking the facility:

* Some mothers say that it is "really handy to just drop in on the way to the shops on Saturday morning". This is helped by the fact that the new hospital site is in the centre of Birmingham .

* Teenagers have acknowledged that it is "better coming with a friend, than with Mom or Dad", so that they can "talk about what we want to talk about and not have parents interrupting".

* Others say that "seeing blood glucose readings on a graph after downloading the meter makes them much easier to understand."

* Parents have expressed the feeling that it is "their time" because it is more peaceful than at the traditional clinic.

Lessons learnt

Perhaps the most surprising and unexpected attendees at the Saturday morning nurse-led drop-in clinic have been the adolescent patients. Two-thirds of those attending on a Saturday morning for the past 2 years have been aged 11 years or over (Figure 2), with the majority coming without their parents.