There are currently six Youth / Respite Workers (YRWs) based in the east, south, south east, midlands, west and north-east regions, who work directly with young people who have muscular dystrophy and their families. The support offered by the youth service is beneficial to the young person with MD as well as their parents / carers. The support offered by the youth service can be divided into 5 main areas:
Youth / Respite Support Services
1. Home Visit
YRWs work on a one to one basis with members in their own homes, engaging in activities such as arts & crafts, playing board games, doing homework, watching TV, listening to music, playing computer games, or just having a friendly chat. This interaction is vital for the member to build up a trusting relationship with the YRW. It also gives their parents / carers some free time to do whatever they wish, knowing that their child is comfortable and well looked after.
2. Social Outings
Each YRW is fully trained in MiDAS (mini-bus driver awareness scheme) and is equipped with a fully wheelchair accessible van which can transport up to 5 people. This gives the YRW the freedom to collect members from home / school and go on trips, encouraging independence. Social outings include trips to the cinema, shopping, going to the circus, bowling, or any activity the member would like to take part in.
3. Summer / Easter Camps
MDI camps are an integral part of the YRW calendar. They have been described as a “working holiday” by the YRWs, giving them the opportunity to get to know the members in a relaxed, holiday atmosphere. These camps are open to members from 11 years of age, and there are many different activities on offer. Some of these include water based activities, such as swimming and canoeing, nights to the dog track, sight-seeing, shopping and a wide range of other group activities.
4. Youth Clubs
YRWs also organise youth clubs / outings, allowing young people with muscular dystrophy to meet up with other members with similar conditions. This type of social interaction can boost the member’s self-esteem and confidence, while also allowing young people to make new friendships and interact socially. Some examples of youth clubs include power soccer, drama workshops, group outings to the cinema / bowling and computer workshops. YRWs also liaise with mainstream youth organisations, and encourage members to get involved where possible.
5. Hospital Respite
It is a diffiult time when anybody is in hospital, but it can be particularly difficult when a child is hospitalised. YRWs offer to visit young members when they are in hospital and stay with them, allowing their parents / carers to go home or have a break for a few hours. This has proven to be a crucial support over the years, with some parents saying it was a life-line to them during such a difficult time.
The respite service is an essential support for people living with muscular dystrophy and their families. Support is coordinated by the Respite Coordinator, in conjunction with the Family Support & Clinic Coordinator.