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Planning an information day for people with diabetes

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The total number of people in the UK with diabetes is now almost 1.8 million. Of this number approximately 250,000 people have type 1 diabetes and over 1.5 million have type 2 diabetes (Diabetes UK, 2004).

Abstract

VOL: 101, ISSUE: 31, PAGE NO: 34

Siobhan Pender, BA, RGN, RSCN, RHV, is diabetic specialist nurse at St Thomas’ Hospital, London

The total number of people in the UK with diabetes is now almost 1.8 million. Of this number approximately 250,000 people have type 1 diabetes and over 1.5 million have type 2 diabetes (Diabetes UK, 2004).

 

 

The main aim of treatment is to achieve near- normal blood glucose and blood pressure levels, and services should help patients, as partners in their own care, to meet this aim.

 

 

Background
The Diabetes Control and Complications Trial reinforced the benefits of optimising blood glucose and blood pressure control in people with type 1 diabetes by either reducing the risk or limiting the progression of retinopathy, nephropathy and neuropathy (DCCT Research Group, 1993)

 

 

Living with the condition

 

 

For people living with type 1 diabetes, everyday life must incorporate multiple insulin injections, calculating insulin doses to match food requirements, and interpreting blood glucose results. It can take months, if not years, to understand and get used to this, and it is impossible to do so without ongoing education and expert advice.

 

 

The emotional impact of knowing your life is no longer spontaneous and carefree can be devastating. In young people especially, it has the potential to be extraordinarily destructive in terms of both physical and emotional health (Clark, 2003). Depression is three times as common in individuals who have diabetes compared with the general population. However, depression goes largely unrecognised and untreated in diabetes care (Skinner and Cradock, 2000).

 

 

Legislation

 

 

Standard three of the National Service Framework for Diabetes (DoH, 2002) emphasises that health care professionals should empower patients to take personal control of the day-to-day management of their diabetes in a way that enables them to experience improvements in their quality of life.

 

 

The idea

 

 

Reflection on personal experience working with patients who have type 1 diabetes revealed that, at the time of diagnosis or when experiencing difficulties, they would voice a desire to meet people who share the experience of living with diabetes. This prompted the idea that an information day could be helpful for these patients. The idea was presented to the multidisciplinary team of diabetologists, psychotherapists, diabetes specialist nurses, dietitians, podiatrists, and the retinopathy eye screening team at a weekly meeting. The team, aware of how education and patient participation are fundamental to the self-management of diabetes, were supportive of the idea, although some senior members thought that patient uptake might be poor and that only the motivated and well-controlled patients would attend.

 

 

The planning phase
Planning started six months in advance. Funding was secured from the Guy’s and St Thomas’ Charitable Foundation. A venue was booked that could cater for 200 people, experts were secured to facilitate the workshops and two hospital volunteers agreed to help with the planning and implementation of the day.

 

 

The juvenile diabetes federation suggested that packed lunches should be provided, which included sandwiches, fruit and sugar-free drinks. These were to be provided free. Organisations that sell merchandise such as blood glucose meters and insulin pen devices directly to the public were invited to have stands. The insulin pharmaceutical industry was not invited, as they are unable to market their products directly to patients. An audiovisual expert was booked for the morning session.

 

 

The sessions

 

 

The team decided that the content of the morning session should have a positive emphasis. The presentations were planned and it was decided that it was important for these to include the following:

 

 

- A session on what is new in type 1 diabetes;

 

 

- A session on service developments.

 

 

These sessions included presentations from diabetologists and professors from both Guy’s and St Thomas’ hospitals (Box 1).

 

 

As patients had requested information on diabetes education, a diabetes specialist nurse from King’s College Hospital in London was asked to talk about the DAFNE (Dose Adjustment for Normal Eating) programme. This is a structured educational programme for people with type 1 diabetes that teaches individuals to adjust their insulin to match carbohydrate intake and lifestyle on a meal-by-meal basis, thereby allowing enhanced dietary freedom. The programme consists of five days of intensive training delivered to groups of six to eight individuals on an outpatient basis (DAFNE Study Group, 2002).

 

 

Inviting participants
The criteria for inclusion was:

 

 

- Patients with type 1 diabetes;

 

 

- Over 16 years old;

 

 

- Had been seen in either Guy’s or St Thomas’ diabetes centre in the past 18 months.

 

 

A list of 1,200 patients who met the criteria was generated from the computerised record system. Invitations were sent out three months before the event. Places were limited to 200 due to the size of the venue, therefore a maximum of two tickets were offered to each patient. To secure a ticket, acceptance letters had to be returned one month before the event. A choice of workshops was offered.

 

 

All 200 places were filled within six weeks of sending out the invitations. The replies were then analysed and workshops were organised to meet the demand. The process of putting 130 patients and 70 partners into workshops was extremely time-consuming. We were able to ensure everyone could attend her or his first workshop choice. However, the ‘Psychological and emotional aspects of living with diabetes’ workshop was overwhelmingly popular and unfortunately, due to a lack of psychologists, not all patients were able to attend this particular workshop.

 

 

All participants were sent an individual letter confirming the afternoon workshops they would be attending on the information day.

 

 

Evaluation
Both Guy’s and St Thomas’ diabetes centres had equal representation. Most of the attendees were between 35 and 45 years of age, with only 18 being under 30 years of age. Both sexes were equally represented and the attendees were predominately Caucasian.

 

 

On the day, everyone arrived minutes before the start of the morning session, making a signing-in process impossible.

 

 

The audiovisual technician was instrumental in ensuring the smooth running of the morning sessions. He made sure that people could hear and see the presentations and he provided a roving microphone for the question-and-answer session. Timekeeping proved difficult and this disappointed patients as it reduced opportunities to ask questions.

 

 

During the morning and lunchtime breaks, people socialised without any coaxing and it appeared that this time was valued.

 

 

A total of 25 members of the diabetes care team across both hospitals facilitated the afternoon workshop sessions. After each 45-minute session our volunteers were able to direct participants to their next workshop.

 

 

Feedback

 

 

Evaluation forms were filled in for both morning and afternoon sessions. The feedback from these indicated that the morning sessions were on the whole pitched at the right level and were highly valued by participants.

 

 

One participant wrote: ‘Listening to the talks, I’ve been totally put off wanting a transplant (except perhaps stem cell) and insulin pumps. I have grown to love my insulin pens.’ And another, following the DAFNE talk, reported: ‘I’ve been doing it for years without understanding the science behind it.’

 

 

The three afternoon workshops that proved the most popular were:

 

 

- The psychological and emotional aspects of living with diabetes;

 

 

- A closer look at food choices and managing your diabetes;

 

 

- How to avoid and treat hypoglycaemia.

 

 

All the afternoon workshop evaluations filled in by participants had common themes. Patients reported that:

 

 

- For the first time, they had had the opportunity to share experiences of living with diabetes with someone else who had the condition;

 

 

- They were learning to recognise that their fears for the future were not unique;

 

 

- They recognised that optimising glycaemic control was a challenge for many people, not just for themselves;

 

 

- Partners were found to have similar concerns and fears, especially around dealing with a severe episode of hypoglycaemia;

 

 

- Practical advice and easy-to-follow guidelines for the management of hypoglycaemia and sick days were very useful.

 

 

A participant who attended the psychological and emotional workshop said: ‘The session raised more issues in 45 minutes than 16 years of check ups.’ Many other patients found the experience similarly rewarding.

 

 

Discussion
The evaluation data from the information day echoes the findings of the Diabetes Attitudes, Wishes and Needs (DAWN) study (Snoek and Van Ballegooie, 2004), which is the largest ever psychosocial study of the perceptions and attitudes of people with diabetes - more than 5,000 participants from 12 countries.

 

 

Unfortunately the event did not appeal to younger patients. One comment made by a patient recognised this gulf: ‘Perhaps not enough diabetes beginners and a few too many people with long-term diabetes. There were so few young faces today.’ Carson (2000) observed that when he saw adolescent patients in diabetes clinics it was easy to recognise that diabetes care was not a priority for them. By the same token, attracting young patients to events is notoriously difficult.

 

 

Everyone involved in the information day subsequently discussed the event and agreed that the workshops were very popular. This could have been because for many people this was the first time they had been offered such an opportunity. There were an overwhelming number of requests for similar events to take place in the future.

 

 

This has prompted the team to explore ways to attract patients who did not reply to the invitation to similar days. Ideas generated to meet this aim include holding smaller events aimed at specific groups, categorised either by age or length of diagnosis. The event can then focus on issues that are affecting them at that time in their lives.

 

 

Other service initiatives for the future include:

 

 

- A pre-conception clinic to be run by a diabetes specialist nurse;

 

 

- A structured education programme for people with type 1 diabetes;

 

 

- The diabetes psychotherapist service is exploring the possibility of setting up a support group.

 

 

In conclusion, events like ours that provide Information and encourage patient participation can be organised for many chronic conditions wherever there is an experienced, enthusiastic and multidisciplinary team, volunteers and funding.

 

 

- This article has been double-blind peer-reviewed.

 

 

For related articles on this subject and links to relevant websites see www.nursingtimes.net

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