Supporting life-limited Dorset & Wiltshire teens
Julia’s House children’s hospice provides frequent respite for children with life-limiting conditions. Thanks to medical advances, more and more of these young people are surviving into adulthood – we want to support teens as they go through tough challenges and face up to their declining health.
January 2018 - December 2018
Charity information: Julia's House - The Dorset and Wiltshire Children's Hospices
Thanks to medical advances, more and more life-limited children reach young adulthood. We support a group of teens and pre-teens who are cognitively aware but have degenerative conditions (e.g. Duchenne muscular dystrophy) that steadily erode their independence. Being a teenager is challenging – but imagine that you’re also in a wheelchair and know that your condition will deteriorate. Without support, these teens are isolated, at risk of bullying and may feel like simply giving up on life.
Our nurses & carers are helping these teens to form a close-knit, supportive ‘Teen Gang’ based at our hospices - a chance for lonely teens to meet up at their own Youth Club, make friends and face the future together. They plan and carry out fun activities like wheelchair football, making films, cinema trips, animal encounters and pizza feasts. Going out as a group, all in wheelchairs, they can enjoy shared experiences. When things get tough, they have a network of friends to help them cope.
To reduce feelings of isolation among teens with life-limiting conditions
Activities» Organise regular hospice sessions with a range of activities for teenagers
» Involve teenagers in actively planning their preferred activities
» Provide risk assessments and logistical support for regular outings planned by the teens themselves
What success will look like
Through informal feedback collected by the nurses, carers and teens themselves - oral, written and possibly via other media such as film.
Help life-limited teens prepare for the transition to adult life once they turn 18
Activities» Via regular social events, enable teens to form friendships that will last into adult life
» Enable teens who have left Julia's House to stay involved by attending monthly Youth Club events and volunteering at other events
What success will look like
Through the numbers of teens who remain involved with Julia's after reaching 18 - those who attend events or take up a volunteering role, e.g. supporting/mentoring younger teens.
The project will fund a year of regular, expert support for our life-limted teens – a chance for them to run their own Youth Club, make friends & improve their quality of life, supported by qualified nursing staff. It will be part of a long-term programme for these young people, helping them face the future with more confidence and a network of peers around them. We will demonstrate success by recording numbers of events/participants and by collecting feedback from the teens themselves
Risk 1: the teens decide not to take part in the Teen Gang. We’ve dealt with this by putting them at the centre of the planning process – they’ve already spent time deciding what activities and outings they want to tackle.
Risk 2: they have a bad experience during one of the outings (e.g. even a car parked across a dropped kerb can be a major logistical problem). To avoid this, our staff research each outing and do detailed risk assessments, plan back-up routes etc, before every trip out.
Donors will receive a project update in the summer and an end-of-year report featuring photos and quotes from the teens, showing what they've been up to and the impact of this project. Generous donors who give over £250 will be invited to a tour of one of our hospices.
Budget - Project Cost: £44,108Loading graph....
Amount Heading Description £15,054 Salary 50% of salary costs for the Nurse who works with our teens £13,027 Salary 50% of salary costs for one of the two key Senior Carers £13,027 Salary 50% of salary costs for the other key Senior Carer £3,000 Outings, equipment etc A fund for the teens to use in their hospice sessions and outings
The project will be based around our two hospices in Corfe Mullen (Dorset) and Devizes (Wiltshire). However, outings will take place at a range of venues such as cinemas, outward bound centres etc. Dorset and Wiltshire contain areas of great wealth and social deprivation alike, and our teens come from all walks of life – what’s important is that they find common ground and friendship with other young people who are facing similar challenges and who understand what they are going through.
Currently 18 young people aged 14-18 (12 in Dorset, 6 in Wiltshire) can benefit from the Teen Youth Club project. We are also supporting 19 children aged 11-13 who are likely to join the Club in the next year or two. All these young people will benefit by building a social life with friends who understand their fears and frustrations. Equally, the wider family will know that their child is getting the help they need to come to terms with their degenerative condition.
Julia’s House provides a unique, award-winning model of care: no other children’s hospice offers our combination of frequent respite and palliative care plus support for the whole family. Since 2003 we’ve established a strong track record in Dorset and now Wiltshire, receiving an ‘Outstanding’ rating from The Care Quality Commission at our last inspection. We also have a core group of nurses/carers who have a great relationship with our teens and want to help them reach their potential.
Read more about the Charity running this project.
Pete is one of our fantastic male Nurses. He is completely committed to supporting teens and can also provide complex medical support as needed.
Ashley is a Senior Carer who works with the older boys and is extremely popular.
Like Ashley, Andrew is a Senior Carer and 'professional friend' to the older boys - offering sympathetic advice or a game of football, as needed.
will pay for a young person to spend an activity day with friends at Julia's House
"William is in a wheelchair and has limited mobility but there are no limits to his imagination."