Rebuilding Futures Fund IMPACT REPORT 2019-2020
REBUILDING FUTURES FUND Help towards a better future for people affected by meningitis Life after meningitis* is tough. That’s why we created the Rebuilding Futures Fund in 2019 - to provide financial, practical and emotional support for people of all ages affected by meningitis. The programme consists of four separate areas – Health & Wellbeing, Opportunities, Bereavement and Specialist Equipment. Each area provides funding towards different types of support, but they are all designed to help people to start to rebuild their futures with hope and confidence. Meningitis doesn’t discriminate based on where you live, what you do or how old you are – and neither do we. Support via the Rebuilding Futures Fund is available to anyone living in the UK who has been affected by meningitis, and there is no means testing. We fund awards up to the value of £1,000, with one application per person per year. We’re not about quick fixes – we’re here to provide tailored support with long-term impact, that will really help people and families to rebuild their lives after meningitis. Meningitis Now is proud to provide this unique, life-changing support – the only meningitis organisation to do so in the UK. We’re committed to making the support we offer through the Rebuilding Futures Fund as effective and efficient as it can be, which is why we’ve created this impact report. *meningitis refers to meningitis and meningococcal septicaemia. Many medical experts now use the term sepsis instead of septicaemia. Registered Charity Number 803016 (England & Wales) SC037790 (Scotland). Company Registration Number 2469130.
Sophia’s story Sophia contracted pneumococcal meningitis as a baby and the illness left her with global developmental delay and severely delayed expressive language skills. However, as Sophia was growing up, it became clear that she was very keen to communicate and she quickly picked up Makaton in nursery. Sophia is now a lively five-and-a-half-year old, who started school last September. Up until recently, she communicated with her friends and family using a book, pointing at pictures to express herself. The difficulty was the size of the book - Sophia is small for her age and the book was getting too heavy for her to carry around everywhere. The family applied to the Rebuilding Futures Fund for a specialist iPad with augmentative and alternative communication software, which has already made a big difference to her life. It’s much easier now for Sophia to make choices for herself and ask more questions than she could before. “I’m having a lot of requests from Sophia,” says mum Jo, “which I am over the moon with! She uses the talker to tell me what she is actually thinking! ” Communication for Sophia used to be so frustrating and she had to put so much effort into trying to express herself - and even then was sometimes misunderstood. This technology means she is on a more level playing field with her peers.
“Sophia is about to begin Primary 2 this week,” says Jo, “She just absolutely loves it, we had a visit to school last week and she was the happiest child in the world!”
What we’ve funded
REBUILDING FUTURES FUND
We’ve made 82
awards during the first year of the Rebuilding Futures Fund totalling more than £63,000.
Health & Wellbeing
Specialist Equipment
3 Talking therapies
3 Mobility aids
3 Cranial osteopathy
3 Specialist car insurance
3 Acupuncture
3 Motability vehicle deposits
3 Reflexology
3 Adapted car seat
3 Physiotherapy
3 Adapted trainers
3 Pain reduction therapy
3 Powered wheelchair
3 Play therapy
3 Bikes, trikes & trailers
3 Art therapy
3 Rehabilitation buggy
3 Gym membership
3 Sensory toys & equipment 3 Visual aids 3 Hearing/Sign Language aids
Opportunities 3 Life coaching
3 Riser/recliner chair & bed 3 Garden equipment
3 Driving lessons 3 Laptops
Bereavement
3 iPads
3 Funeral contributions
3 Training & tuition
3 Headstones
“Having the award for art therapy meant my daughter could explore emotions that she usually chooses to hide from others and gave her a platform in which she can express herself during an extremely difficult time in her life.”
“It took away the worry of having to find a large sum of money at the hardest time of all.”
“Being able to compete in a sport I love gives me a better quality of life. A larger vehicle allows me to attend all training sessions and games and meet my disability needs. It stops me feeling isolated.”
“With the help of funding for my wheelchair roof topper for my car I am not so housebound and I can help my family get around more despite my disability.”
“I’m so pleased Meningitis Now has this fund. My life as an amputee is so expensive and having this little bit of help really makes a huge difference to me and my family.”
Jessica and Sheila’s story Jessica, from Gateshead, was described as a true ‘Angel of the North’ who lit up the room with her smile. Tragically the 21-year-old University of Derby student died suddenly from meningococcal meningitis and septicaemia in October 2019. Mum Sheila said: “Jessica complained of a headache before taking painkillers and going to bed. Next morning I went to speak to her but I couldn’t wake her up. It was such a shock” Sheila added. “It happened so quickly and hit everybody hard.” “Nobody prepares for this – how can you – and to have not just support but the money and the help from the Rebuilding Futures Fund towards Jessica’s funeral costs has been amazing. It was easy to apply and it’s made such a difference.” Since then Sheila and the family have helped raise awareness through distributing our signs and symptoms cards and also held fundraising events towards our ongoing work. They hope to take part in a colour run in Jessica’s memory this summer. “Jessica was really into her art – she was training to be an art therapist – and she loved bright colours,” Sheila added. “It will be a lovely way to remember my beautiful daughter.”
“Nobody prepares for this – how can you – and to have not just her support but the money and the help from the Rebuilding Futures Fund towards Jessica’s funeral costs has been amazing.“
Making a difference
REBUILDING FUTURES FUND
We’ve collected feedback and data from people who have had awards using evaluation forms, interviews and a self-assessment outcome tool. We’re delighted that the evidence from this feedback is very clear – the Rebuilding Futures Fund has had a significant positive impact on individuals and families. Nine out of ten people felt that their award had made a big difference to their lives and had helped them substantially. There was evidence of a noticeable improvement to mental and emotional wellbeing of the award recipients and their family members. There was also evidence that the issues and concerns negatively affecting people’s lives were alleviated by the award. People’s feedback about the quality of service they have received from Meningitis Now is also very positive.
“After speaking to the support team and them explaining that the fund is set aside to me and others in the same situation, I accepted the funds and hopefully used them to help my daughter rest in peace. It also helped me to start my recovery, [even though] I know I have a very long way to go.”
Bereaved family which received support through the Rebuilding Futures Fund
“It was giving me back something of my old life… when I’m in the water and swimming, I sort of feel equal to everyone else… because I can swim as well as anybody else, it’s sort of like a leveller.” Award recipient who applied for swimming sessions
“I’ve only been out on it once… [but when I] went out I loved it, absolutely loved it. It is going to make such a difference for me… It’s about getting my independence back, because [without a scooter] I have to rely on someone to take me out. I can’t just go down the shops, I literally can’t. It’s about me getting a bit of independence back and being able to get on my scooter so I can go out on my own without having to rely on others. People are at work and they haven’t got time, so I spend a lot of time on my own and I’m isolated. It was about getting a bit of life back.” Award recipient who applied for a mobility scooter
Reece’s story Reece and his twin brother Seth both contracted meningitis in 2010, aged three weeks. While Seth has made a full recovery, Reece has been left with a severe brain injury, blindness, epilepsy and other complications. Reece’s family applied to the Rebuilding Futures Fund for an adapted car seat, to allow Reece to travel safely in the family’s car. Reece’s specialist car seat supports his trunk and the padding protects his skin from breakdown. Reece can now travel to his many appointments and therapies, as well as accompanying his mum Dawn as she does normal everyday tasks. The car seat also allows Reece to travel safely and in comfort with his whole family. Reece can’t control his body temperature, so the seat helps him to do this when he’s travelling in close contact with his brothers in the car. “Reece can now safely travel with us all as a family,” says mum Dawn. “He is comfortable and happy with his brothers in the back. It really is the small things that make a big difference. A hassle free process that helps so much.”
“It really is the small things that make a
big difference. A hassle free process that helps so much.“
Key findings
98% 98% of people who provided their feedback said that the support they received via the Rebuilding Futures Fund helped them
95% 95% of people felt that their award had made a difference to them and their life
93% 93% felt that the form was straightforward to complete
REBUILDING FUTURES FUND
93% 93% of respondents stated that it had ’helped a lot’
91% 91% said that it made a big difference
89% 89% agreed that our requests for supporting information were appropriate
96% 96% thought that their application was processed quickly and efficiently
“Communication was excellent. It was quick and easy. Having you order the equipment made life easier. It just arrived with no hassle.“
Heath’s story Heath was 50 years old when he contracted viral meningitis, leaving him with after-effects including fatigue, loss of muscle mass and muscular/joint pain. Heath finds it difficult to walk and get up from a seated position. He also finds picking up or holding things very difficult, such as holding a pen for writing. Because of this, Heath was spending a lot of time at home, with little opportunity for going out and meeting people. He started to visit the gym and rebuild his muscle mass and noticed long-lasting improvements. However, Heath needed a gym regime that would allow him to exercise little and often, so he didn’t overburden his system. Replacing weekly sessions with continuous gym membership was an expensive option, so Heath applied to the Rebuilding Futures Fund for financial support. The more frequent visits helped to loosen up his shoulders and reduce the pain. “The muscle rebuilding has been immensely helpful, because the pain, I’d say, disappeared by 70% by doing the exercise,” says Heath. And the visits to the gym enabled Heath to get out of the house and enjoy the company of others. “You’re socialising, you get to know people there. That’s important when you are stuck indoors like I am a lot of the time. And then the actual feel-good factor, the release of chemicals in your body, makes you feel better.”
“The muscle rebuilding has been immensely
helpful, because the pain, I’d say, disappeared by 70% by doing the exercise.“
Taylor’s story Taylor contracted meningitis when he was eight months old. His mum Terri, then 22, watched helplessly as doctors gave her son just hours to live. Thankfully Taylor did survive, but he needed his fingers and thumbs amputated and both legs through the knee. Taylor’s kidneys also failed and he was left on dialysis. Taylor is now five years old. The Rebuilding Futures Fund recently funded artificial grass to make their garden safe for Taylor to play in. His mum says: “We moved to a disabled bungalow and the house is perfect for Taylor’s needs. But the garden was unsafe and not usable. Taylor loves being outside and before we could use the garden I’d take him to the park, but stares and comments from others because of his prosthetics were getting him down. So having a garden he can escape to is his dream come true and I’m so glad I don’t have to say ‘no’ any longer when he asks to go outside – I used to hate that! The artificial grass is perfect for Taylor’s legs as they are so sensitive and can break down. It means Taylor can get back to doing what he enjoys best, which is being an outdoor boy.”
“Taylor loves being outside and before we could use the garden I’d take him to the park, but stares and comments from others because of his prosthetics were getting him down.”
saving lives, rebuilding futures
To apply to the Rebuilding Futures Fund, call our Meningitis Helpline on 0808 80 10 388, email helpline@meningitisnow.org or speak to one of our Community Support Officers. Find out more at www.meningitisnow.org/financialsupport Meningitis Now relies on donations to fund all aspects of our work and we are incredibly grateful to our supporters. Thank you to the many funders who have supported this new programme, including The Worshipful Company of Butchers, Royds Withy King, Sobell Foundation, Hodge Foundation, The Hospital Saturday Fund, Bruce Wake Charitable Trust, Doris Field Charitable Trust, D’Oyly Carte Charitable Trust, Summerfield Charitable Trust, Boshier-Hinton Foundation, Caffe Nero Foundation, The Fence Club Trust Fund, Melanie Sharer Trust, Sovereign Health Care, Douglas Arter Foundation and the Sir Jules Thorn Charitable Trust. The research that this impact report is based on was produced in collaboration with Chrysalis Research.
Contact us on Phone: 01453 768000 Email: info@meningitisnow.org Helpline: 0808 80 10 388 Website: www.MeningitisNow.org Facebook: fb.com/meningitisnow Twitter: @meningitisnow Instagram: @meningitis_now Meningitis Now Fern House Bath Road Stroud Gloucestershire GL5 3TJ Registered Charity Number 803016 (England & Wales) SC037790 (Scotland). Company Registration Number 2469130. © Meningitis Now, March 2021.