Transplant Active
Project Briefing
The ‘Transplant Active’ Project
Transplant Sport UK in partnership with The Transplant Support Network
TSUK and TSN have successfully gained strategic funding to initiate a three year project from the DfES Children, Young People and Families Grant Programme-CYPF. This funding is from the newly named Department of Children, Schools and Families. The project has been named ‘Transplant Active’
The aim of the grant is to develop and implement a three year national plan for recreational and educational activities for transplant children and to work with their transplant families to improve access to information, parental/child networking and support services. A Project Manager has been appointed-Carol Olley.
The Project Manager will develop appropriate supporting literature to support and advise transplant families and further develop communication tools to reduce isolation and promote inclusion, including further development of websites and other visual aids, including the development of a DVD.
The ‘Transplant Active’ Project aims to develop and extend the current activities of both organisations to enable more transplant children, young people and their families to access and benefit from our activities and services, creating a network of support nationally. This funding will enable us to capacity build, develop networking opportunities specifically with transplant children, their families and professional bodies nationally to encourage and promote inclusion, improve outcomes, information and access to other available services for children and families in this marginalized group according to the overarching principles of the ‘Every Child Matters’ agenda.
Transplant children and their families form a large part of the TSUK membership. Each year TSUK organise two major events involving children and young people, the British Transplant Games and Children’s Transplant Hall sports. Both events provide the opportunity for transplant families to come together, to take part in organised sporting and social activities; make new friends of people with similar experiences; and, most importantly, for all the children, to have fun.
Our principal philosophy is that transplant children of all ages have fun and achieve at their own level. Considering the thousands of children who have undergone transplantation, the numbers who can manage to come to these events are still relatively small, demonstrating the need to expand activities to include more children and families. By bringing families together and working closely with paediatric transplant units, we will ensure that previously hard-to-reach families are included in such activities, so encouraging participation by a wider community. The ‘Transplant Active Project’ aims to bridge this gap and create funding to enable activities to take place and aid with costs to parents.
The addition of a dedicated and experienced Project Manager to manage this project, working closely with transplant families, will make a significant impact to increasing the number of children and families who can benefit from the services and opportunities offered by TSUK and TSN. The Project Manager will initially increase TSUK membership primarily by actively encouraging attendance at transplant events and promoting the benefits of the significant network opportunities offered by both organisations. By extending opportunities for transplant children and families to meet in smaller, local groups they will enjoy the ability to openly discuss common issues and provide mutual support. This will also increase awareness of the organ-specific one-to-one support available through TSN.
Transplant children often experience problems at school including a higher than average level of bullying. Absence from school due to illness results in a disproportionate number of transplant children having Special Educational Needs. Funding of this project will provide opportunities to identify such issues and develop and provide informative literature to teaching staff and other professionals.
TSUK and TSN have a national membership throughout the UK therefore, the work carried out by the Project Manager has national significance. The location of two main TSUK events each year changes to enable these events to be accessed by all transplant recipients throughout the UK. Therefore, TSUK in partnership with TSN need to recruit lead parents and adult transplant recipients willing to aid with the setting up of local organised groups of parents/recipients/carers on a geographical basis throughout the UK. Several groups are already in place in the SE and NE England however expansion is needed to maintain accessibility for the greater population. This will be a gradual process.
Transplant Sport UK primarily organise sporting events for transplant recipients and their families. However we recognise that not all families feel that attendance and participation at a sporting event is suitable for themselves. Therefore, the Project Manager will retain responsibility to develop and organise new exciting activities for transplant children, their siblings and their families such as activity based holidays for younger children and Outward Bound Weekends throughout the year for teenagers. In relation to Outward Bound Activities and other child/teenage orientated day trips and activities, careful consideration would be given to geographic location and also the ability of the families to attend due to distance. These factors would be given careful consideration when planning the location of activities to ensure equality of opportunity for all. TSUK/TSN each has a membership which includes people from different cultures and their needs and cultures are fully recognised and respected.
The Transplant Active Project is also aimed at siblings. Siblings are the unintentionally forgotten children during the often frequent hospitalisation of their transplant sibling and it is within the project brief to offer substantial opportunities to brothers and sisters of transplant recipients.
Often, some parents find coping with transplant children difficult and they benefit dramatically from the support and networking opportunities offered by TSUK and TSN. Being together can help these parents cope with difficulties and develop a realisation they are not alone. Having another parent to talk to is often a life line for many parents. Due to the success of transplantation, a large number of children are going through a transition period, from child to adult. Coping with the reality of transplantation as a teenager can be fraught with problems for both the teen and their parents as they struggle to cope with the future. Experienced parents and young adults who have experienced this transition period and who are able to discuss it, are a huge asset to the project success with this age group.
The Project Manager would work with TSUK and TSN Trustees to devise, implement, deliver and manage the ‘Transplant’ Active Project.
Target Groups
1. Families with children undergoing transplant assessment
2. Children and young people on the current waiting list
3. Children who have received transplants and their siblings (There are several thousand throughout the UK)
4. Parents and carers
5. Professionals
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