Short Break Stories

Family Support Weekend

A story by Diabetes UK Scotland

The Family Support Weekend took place at the Holiday Inn in Edinburgh from Friday 8th November to Sunday 10th November. 17 families with 25 children attended the weekend.

All children groups engaged in external sports and social activities, had structured teaching input and were given opportunities to learn practical management of diabetes by Health Care Professionals and from each other, under supervision.

Parents and carers had very wide-ranging information sessions on all aspects of diabetes management and many opportunities to share experiences and points of view, relevant to their personal circumstances. Opportunities were available for speaking to Health Care professionals on 1-1 basis

The aim of the project is to give children with diabetes and their families time away from home to learn more about diabetes and gain support from Health Care Professionals and others who are living with the same condition.

The events give the children the chance to take part in fun activities, meet other children with diabetes and develop their self confidence and independence. The families all learn more about management of diabetes encouraging children to gain the skills to self manage and helping parents develop the confidence to give their children more freedom.
Tip 1:
A competent “management” Team of Volunteers who are motivated to provide a professional event relevant to the problems and expressed by their client group

Tip 2:
Find out what people want / need. Don’t assume.

Tip 3:
Find out participants expectations and if your event met their expectations. Continue to make improvements where possible as needs change
A variety of activities and events took place across the weekend to provide entertainment, education and support the young people attending. At the start of the weekend the children first played games to get to know one another. All children were placed in age-related groups. Activities over the weekend included visiting soft play area and using hotel leisure facilities, a visit to a museum and a bowling trip. Children were also given time to discuss their diabetes with peers and healthcare professionals.

“We very much enjoyed the experience. It was very positive for my daughter to be among other people her age who had the same condition. She wasn’t sure if she wanted an Insulin Pump before we went, but came back very keen to have one! Five of the nine girls in their group were on insulin pumps and were happy to tell Rosie how great they are and show of their pretty covers and pump belts”
The management of diabetes is complicated and there is no break. Being a carer of a young person with diabetes can be emotionally draining, the support provided at the Family Weekends for carers allowed them to talk about the challenges amongst others who are going through similar experiences. This allowed people to learn better coping mechanisms. Carers also improved their understanding of diabetes so that they felt more confident in the care that they give.

The knowledge that their children were enjoying themselves with trained volunteers and Health Care Professionals gave them the freedom to focus on their own needs as a carer.

“We all had a very enjoyable and hard-working time. We learned a lot of new things to help understand and manage Type 1, It was refreshing to be able to leave the children in safe hands and completely turn off my ‘high alert’ state of mind for the first time since Peter was diagnosed 2 years ago.”
During the break the young people with diabetes increased their understanding of diabetes which will allow them to better manage their condition by themselves without continual support of a carer. This allows the carers to feel more confident in giving their children more freedom. Links were made between carers at the event to ensure that they can continue to be supportive to each other once they return home providing them with an ongoing support system.

Carers were also made aware of other areas of help that are available from Diabetes UK Scotland, such as the Careline, Diabetes UK family groups and children’s holidays.

"We met many parents who were feeling inadequate in managing diabetes and our support network has expanded because we have kept in touch since the event. We realised that other people stay quite near to us and we now contact each other regularly and share experiences and advice. The kids also learned from each other and they too have made friends."
The project aims to ensure that both children with diabetes, their siblings and carers are fully supported by this event. Children have a better understanding of the condition and are encouraged in their self management by Healthcare Professionals and their peers, providing information and improving their emotional wellbeing.

Parents and carers have the opportunity to share stories with and learn from one another facilitated by trained Health Care Professionals - allowing them to learn to develop in their own confidence and understanding of managing a child with diabetes.
The programme organizer makes contact with families prior to the event to establish if there are any necessary requirements needed by the families. After the event all points made by parents and children are carefully noted to ensure that any future programme content reflects what they are looking for in terms of support, education and practical advice.
The events organized by Diabetes UK allow families to spend more time with trained Health Care Professionals than would be possible in an NHS setting. They also spend time with their peers allowing them to discuss in an informal group the information they receive from their own diabetes nurses and consultants.

The Family Support Weekend provides a setting for parents and carers to receive emotional support and encourages the children to have a fun time with one another accessing activities that they may not otherwise have access to at the same time as learning more about diabetes in a relaxed environment
The Family Support Weekend encourages young people to learn more about diabetes and improve their self management of the condition. This will allow them to increase their confidence, not only in their ability to self manage but also in being able to talk to others about the condition.

The improved understanding of diabetes management will help them avoid the devastating complications of diabetes, including heart disease, stroke, blindness, kidney failure and amputation.
A number of families had felt very isolated in their own areas, particularly where they live in rural parts and had no support nearby. Much individual work was done by volunteers to help them feel confident in managing their own situations and also how they should refer back to their own Healthcare Professionals. Additionally, new relationships between families were made and past experience has shown that these will last for many years.

We had fewer applications from families than expected. We have had fewer applications for all our Events in 2013 than usual. We believe that the difficult financial climate is a factor in this despite our offers of advice and help with bursaries.
We sent out two mailings through the Scottish Paediatric Diabetes Directory asking HCPs to make their parents aware of the Edinburgh Family Event. We had not done this before. We also contacted HCPs, clinics, hospitals, Diabetes UK Voluntary Groups to advertise this event and encourage applications.

Where necessary we may allocate 1:1 supervision ratios with children who require extra support. Sometimes this is not always known before the event as a child may not have medical needs but require extra emotional support. If a child struggles in a particular group it may be necessary to swap a child to another one, if we and the family feel this would be of benefit.
Information has been very clear and regular updates and advice helped to support the application and reporting process.
We use an evaluation form and encourage families to feedback. We use the same form for each Family Event so that they are measurable against each other.

We are adapting the forms to ask more measurable questions in 2014. These will be more powerful, useful and comparable. Ideally we will be measuring impact of our events against famiiies expectations and knowledge before, during and after the event so we can get a better picture of how beneficial these events are.