Summary
The project enables young people living with Cystic Fibrosis to have one to one befriending support while their carer can use that time to explore other activities whilst having a break from their carer role.
What Befriending for children with Cystic Fibrosis did
Children with Cystic Fibrosis were provided with volunteer Befrienders to provide one to one support for up to 4 hours every two weeks. In some cases, where additional support was deemed necessary, we made this support available on a weekly basis. The types of issues we have been trying to address as part of this work are to help build confidence in the young person, build motivation and self-esteem, develop and sustain better relationships and to support better adherence to their treatment and medication regime.
Children were either referred to the service directly by their carer who felt this support would be beneficial for them or by the specialist NHS teams who provide their medical care.
The types of activities that the young people have taken part in varied depending on the personal interests of the young person and to help address issues that were identified during the baseline assessment at the beginning of their participation. Some of the activities that took place include visiting a college campus, pottery painting, puppet show, art and craft fair, cat café, fishing, exploring rock pools at the beach , cooking classes, driving school, helping in a community café, charity dog walk, museum, ice skating, board games in hospital, Zoology museum, bowling, swimming and a visit to a science centre.
Feedback from carers showed that with the time that they had while the young person was participating in the befriending gave them the opportunity to ‘just chill out’, spend more quality time with their other children, go shopping, spend time with their partner and ‘time to breathe and get things done’.
One carer commented “When X is with her befriender is gives me time to have head peace.”
What Butterfly Trust has learned
We have learned that running a national service that it is not always easy to recruit volunteers that are perfectly matched to the individual young people who are referred to the project. Targeted recruitment is needed to identify volunteers, which is not always as quick to succeed with, as a more general approach to recruitment and finding the correct volunteer in the right area to suit individual clients is the most challenging part of running a project, like this, on a national scale.
How Butterfly Trust has benefitted from the funding
Having funding from a large fund, like Better Breaks, definitely helped us secure further funding from other sources. It demonstrates that our project is worthwhile when a larger funding show faith in the project and our organisation.
Having this funding gave us time, after the non-continuation of several years of BBC Children in Need funding, to prepare a more robust application to BBC Children in Need and securing a three year grant for over £82,000.
Project Outcomes
Outcome
20 young people will have enhanced wellbeing due to improved self-esteem, behaviour and relationships, increased social skills, confidence, motivation, awareness of personal potential and have engaged in new mainstream activities and personal or educational ambitions.
Results
9 young people had enhanced wellbeing as a result of receiving befriending. Unfortunately due to changes in the member of staff co-ordinating the project we did not reach the target we had set. We have also found that it was difficult to recruit the right volunteers for each individual as the project was run on a national scale. However, going forward we currently have 12 young people accessing this support and we anticipate that there will be over 20 young people receiving this type of one to one support later this year.
Although we didn’t have as many young people on the project over the period some of these young people had higher levels of issues than others and received one to one support with a befriender on a weekly basis rather than every two weeks.
Although numbers of young people accessing the support were less than anticipating we can demonstrate from our evaluation and monitoring that all of the young people saw increased improvement across all of the areas we were
Case study
One of our young people on our Befriending service has had a particularly challenging home life throughout the years due to the inconsistency of care that has been provided to him. This has had an impact on his self-confidence, self-esteem and has restricted his opportunity to participate in relevant activities need to help him to develop his every day skills and abilities. Before this young person was matched with his Befriender he was unable to express his views and was afraid to tell people what he really wanted. However, this boy’s Befriender has played a key role in changing this and has helped him to believe in himself and given him the confidence to speak up for what he needs and wants. Also by his Befriender recognising his desire to gain a career in Cooking, we have been able to give him the opportunity to gain experience in this field through our project by finding suitable training and classes. This boy and his Befriender have taken part in a variety of classes now and will continue to do so which will help him reach his life goal which will allow him to live independently as soon as possible.
Outcome
30 carers will have benefitted from reduced stress, opportunity to engage in new activities of their own and spend time with their other children, family and friends. They will benefit from an improved relationship with the child on the befriending programme.
Results
14 carers benefitting from additional free time, while their young person was receiving befriending, that they used to participate in other activities.
From our evaluation and monitoring we can demonstrate that carers took part in other activities like spending time with their partner or other children. We know from previous feedback and experience that siblings can sometimes feel neglected as carers spend the majority of their time dedicated to the vigorous treatment and medication regime of having a child with Cystic Fibrosis which can make the carers feel guilty. Having this time to spend with their other children can be beneficial in creating better relationships between family members. Carer relationships can also be strained due to the stress and pressures placed upon parents and being able to spend some quality time together benefits both the carers and the young person.
Case study
One of the Carers of a child that we help through our Befriending service is a single mother who has another two young children who she cares for. Her girl who receives Befriending has had an extremely difficult 2 years due to a rapid decline in her health which has led to increased hospital stays. As well as this child’s Cystic Fibrosis she also suffers from anxiety which results in difficulties with her behavior. This girl requires to go to hospital daily meaning that her mum needs to taxi her two and from hospital every morning and night which is costly for a mother who relies solely on benefits from income, causing her additional stress. This has been recognised through our project and we have been able to help this mother with travel costs to and from hospital to ensure she is able to concentrate on covering the costs of essentials for her family.
Additionally, due to her daughter’s ill health and additional care needs this mother worries that she does not dedicate enough of her time to her other children. However through our project, this mother is now able to spend quality time with her other two children when our Befriender takes her daughter out. As a result this mothers mental health and well-being has improved as she feels that she can give her full attention to her other children, which helps to boost her confidence as a parent and reduces the natural feeling of guilt that she has.
Outcome
30 carers will have benefitted from reduce stress, opportunity to engage in new activities of their own and spend time with their other children, family and friends. They will benefit from an improved relationship with the child on the befriending programme.
Results
14 carers of young people with Cystic Fibrosis enjoyed the opportunity to spend time with other members of their family and friends due to their young person participating in befriending. These carers also had the opportunity to participate in other activities including going shopping, spending time relaxing and having the chance to just catch their breath and focus on other things they do not normally get the chance to do.
Case study
A young couple who had a child on our Befriending project found the time that their daughter had with their befriender was invaluable to them too. This couple would spend the time when their daughter was not there to go out and have time on their own together. Caring full-time for a child with Cystic Fibrosis is extremely demanding and finding quality time for just you is near impossible. Our project allowed this couple to look forward to time on their own together and they were able to go out and enjoy each other’s company without worrying about their daughter, helping to strengthen their relationship. This couple felt knew she was in good hands and felt they could “breathe” helping to provide the relaxation they needed.
Outcome
Additional support provided, to 30 carers, by our Support Service Manager and highly skilled volunteer team will enable the carer to access support in areas such as housing, employment, education and to secure appropriate rates of disability and welfare benefits along with accessing financial suppor
Results
Support was provided to carers of young people accessing befriending support in areas of housing, employment, education, disability and other welfare benefits and accessing financial support.
15 carers received support with disability and other welfare benefit applications providing them with additional financial support to provide a better home environment and reduce stress on the carer. 18 carers received emotional support from our trained staff and volunteers enabling them to cope better with their care role having a child with Cystic Fibrosis.
We provided support in other areas to ensure families had suitable housing to meet the needs of caring for a child living with a chronic life limiting condition like Cystic Fibrosis.
We accessed additional financial support to enable carers and their young people to have much needed respite breaks, holidays and purchase essential household items that they may not have been able to secure for themselves as quickly as they would need
Case study
We have provided extensive support to the carers of a child who is on our Befriending service, due to various challenging situations that have arisen over the past few years. As well as caring for their son who has Cystic Fibrosis, this family struggle daily due to a low income, poor living conditions, anti-social behavior in their area and a breakdown in family relationships. We have been able to alleviate some of these pressures for the family by helping them to apply for new housing, making their application to Disability Living Allowance for their son and applying for grant funding where needed. Understandably this family’s home life is extremely stressful and we have also been able to support them emotionally through these difficult times. The help that we have provided and will continue to provide to these carers can allow them to focus on the extensive care that they must provide to their boy.
Outcome
20 Young people and children will have the opportunity to take part in mainstream activities that they do not currently have access to due to lack of financial resources and health issues. Through befriending the children and young people will have support both financially and emotionally due to the
Results
9 young people participated in activities that they would not have been able to without accessing our befriending support. One young person visited a college campus with the support of their volunteer befriending enabling them to explore the possibility of starting further education.
One young person participated in cooking classes with their befriending enabling them to be better prepared for independent living and preparing their own meals. This is an area we are currently exploring with NHS dieticians to pilot a service aimed at teaching young people with Cystic Fibrosis how to purchase and cook appropriate foods to meet their special dietary requirements. Having this focus on independence also helps reduce the strain placed on their carers.
Other activities young people have tried due to accessing our befriending support included pottery, fishing, driving school, bowling, visits to tourist attractions and sometimes just going for a coffee or something to eat and exploring iss
Case study
A young gentleman on our Befriending service comes from an extremely poor social background and as a result his opportunities at home are extremely limited. This young boy’s mum who is his main carer also has her own health problems which mean he spends most of time at home and is very isolated because of this. Since this child has been matched with his Befriender he has been given the chance to try out new activities that he has been unable to access in the past due to costs and location. He has been trampolining several times and is also due to go swimming with his Befriender soon. This boy’s health team are concerned about his adherence to treatment as his physiotherapy has not been getting carried out at home. However, through the activities he has been doing with his Befriender he has been able to carry out a cardio exercise which will improve his health without him even realising. Therefore, our project is helping to improve his mental health and well-being and physical health through fun activities that are new to him, which his friends are participating in that he was previously missing out on due to his circumstances.