Working in partnership with local hospitals, respite centres and specialist services, we’re funding projects which focus on improving children’s physical and emotional well-being, while providing additional support services for parents and carers.
Here you can find out a little bit more about some of the projects in Sussex that we’re currently funding…
Blood pressure monitors for the Surgical Ward at the Alex
We’re fundraising to provide the Royal Alexandra Children’s Hospital with extra blood pressure monitors for the Surgical Ward. Demand on the ward and the increased complexity of surgeries means that Dinamap monitors are required to ensure that young patients are monitored sufficiently and safely.
The Surgical Ward at the Alex has 12 beds that are constantly at full capacity, providing a wide range of complex operations. The extra equipment we want to provide, means that all children who require close observation will receive it without delay and it will also reduce the sharing of monitors in the acute post-operative stage.
Reflux detection equipment for the Alex
We’re aiming to provide two special pieces of equipment called MII-PH, to detect reflux in infants and children at the Royal Alexandra Children’s Hospital in Brighton. The new combined machines will replace older equipment and will be able to detect not only acid reflux, but extra-oesophageal symptoms such as unexplained breathing problems and apnoeic episodes.
Around 100 children a year will benefit from the new equipment which will be used as part of the Paediatric Gastro-enterology service at the Alex. It is the only department in Sussex that can provide this reflux test and the addition of two MII-PH will expand the service to all young people up to the age of 18.
PanOptic equipment for the Children’s Emergency Department
We’ve pledged to support the Children’s Emergency Department (CED) at the Alex by raising funds for two PanOptic Ophthalmoscopes. This special piece of equipment is used to examine the retina (back of the eye) by looking through the pupil. Examination of the retina is a vital part of an assessment of a child when they are admitted to CED.
The PanOptic machine has many more advantages than a standard Ophthalmoscope, including; a larger range of view without the need to dilate the pupil with eye drops, a quicker examination for the child, and it’s also less intimidating for a young person as the examiner does not need to get as close.
In addition to the above, the equipment is able to be set up with an Otoscope so that it can also be used to examine children’s ears.
Portable lung function machine for Worthing and Chichester hospitals
We’re supporting Worthing and Chichester hospitals by fundraising for a portable lung function machine. The equipment will be used to treat young patients with Cystic Fibrosis and other chronic chest problems, such as asthma and bronchiectasis.
The Royal Alexandra Children’s Hospital in Brighton is expanding its high-quality children’s Cystic Fibrosis and chest centre to provide care into West Sussex through Worthing and Chichester hospitals. The ‘Vyntus Spiro’ machine will measure accurate, high quality and up-to-date lung function to enable accurate diagnosis.
Supportive equipment for children with Chronic Fatigue conditions
We’re fundraising for equipment at the Royal Alexandra Children’s Hospital to support young people diagnosed with Chronic Fatigue Syndrome (CFS/ME). A laptop and computer tablets are required so that patients can access online Cognitive Behavioural Therapy and activity management treatment.
By accessing these treatments online, it would increase the amount of therapeutic time available to young people and their families offered by the Alex. Many children with CFS/ME currently rely on the community service which includes home visits for young people too unwell or unable to attend clinics in hospital.
We also aim to fund heart rate monitors to help young people with pacing activities. Due to the unpredictable nature of CFS/ME, many children struggle to know when to rest and when they can be more active. Sufferers endure debilitating symptoms and are prone to physical expenditure, often resulting in missed hospital appointments.
Physio equipment for the Alex
As the official fundraising arm of the Royal Alexandra Children’s Hospital (the Alex) in Brighton, we raise money for life-saving and cutting-edge medical equipment as well as providing funding for therapies and services. As part of our ongoing commitment to the Alex, we’re funding equipment for the physiotherapy department to help improve the quality, comfort and enjoyment of the therapy care they offer.
The physio department at the Alex already see hundreds of outpatients every year and the demand on physiotherapists is high. The equipment we aim to purchase, such as postural items, will increase the number of children who can be treated on site, decrease waiting times, improve staff efficiency, and help reduce the pain and discomfort of young patients.
Defibrillators for the Maternity Ward at RSCH
We’ve pledged our support for the Maternity Ward at the Royal Sussex County Hospital in Brighton by funding new cardiac defibrillators. The ward provides maternity care to approximately 6,000 new mums each year so having this updated equipment available is highly important. A defibrillator is needed for someone who is in cardiac arrest and for every minute it takes for the equipment to reach a patient and deliver a shock, their chances of survival is reduced by up to 10%.
Cardiac arrest in pregnancy and during birth fortunately is rare but does occur in 1 in every 12,000 admissions. Cardiac disease is the number one cause of maternal mortality and high-quality CPR is the primary component which contributes to the survival of a patient from cardiac arrest. Funding from charitable organisations such as Rockinghorse helps bridge the funding gap to ensure that equipment such as defibrillators are replaced sooner than would usually be possible by the NHS.
Diabetes equipment for the Alex
The Children and Young Person’s Diabetes Team at the Royal Alexandra Children’s Hospital cares for and supports over 200 young patients with type 1 diabetes. We’ve previously funded glucose monitoring systems and more recently, replacement transmitters for the devices. As part of our ongoing support of the diabetes team, we’re funding special cooling wallets for insulin storage, as well as glucose kits and food weighing scales.
Approximately 40 children are newly diagnosed with type 1 diabetes each year and referred to the Alex for treatment. The items we’re funding will mean that demand is met, and young patients will be equipped with the necessary tools to help them manage their blood sugar levels effectively and reduce the risk of unplanned hospital admissions.
In addition to the equipment above, we’re also fundraising for a laptop and computer tablets for the Paediatric Diabetes Team. These will not only enable data downloads for young people who do not have access to the internet, but they will also be used as a teaching aid during structured education sessions.
We’ve also agreed to fund three more Dexcom receivers. These are glucose monitoring systems that are used for newly diagnosed patients who are in the Alex as inpatients and require constant monitoring of their blood sugar levels.
Rockinghorse Bounce Club
We’re supporting Ringmer Primary and Nursery School by funding an after-school club. The ‘Rockinghorse Bounce Club’ has been developed for pupils who find attending the regular groups more challenging. The introduction of Bounce Club will provide an opportunity for children to access further sensory and motor play sessions. Having access to a club like this will help with their movement skills, attention and regulation.
Thanks to Rockinghorse funding, Ringmer Primary will be able to purchase therapeutic equipment for the after-school club. The specialist equipment and toys will also be accessible to students at other times during the week if needed. The Rockinghorse Bounce Club will be in place during the next academic year (from September 2019).
Support for parents of children with Cystic Fibrosis
In 2017, we funded mindfulness courses for parents of children with Cystic Fibrosis. In partnership with the Royal Alexandra Children’s Hospital (the Alex) in Brighton, we funded the parent forum for two years, which has received notable positive feedback.
Facilitated by the Paediatric Psychosocial Support Service (PPSS), mindfulness skills are taught to parents of young patients with Cystic Fibrosis. The course aims to help parents manage and cope with stressful and difficult situations by supporting their well-being and mental health.
Cystic Fibrosis is a genetic, chronic and life-limiting condition that requires ongoing daily management. This includes regular medication, intensive physiotherapy and specific dietary requirements, as well as routine clinic visits and regular hospitalisations.
Following the success of the introductory courses, we have agreed to fund a continuation course which will run for another two-year period. Dr Sally Clarke is the Clinical Psychologist for Cystic Fibrosis and explains the huge benefits of the mindfulness programme.
She says, “Parents who attending the ‘Rockinghorse Nurturing Parents’ sessions have reported a wide range of psychological benefits. These include improvements in anxiety and depression amongst many others.”
We have also received lots of positive feedback from parents, including: “I enjoyed practicing mindful communication in the sessions. It helped me think about my triggers of stress and try to see them differently.” “The sessions have improved my skills as a listener and helped me notice physical and emotional changes in myself and others. It has given me the confidence to be kind to myself.”
Summer holiday outings at Tudor House
Tudor House is a respite centre in Brighton that provides residential facilities to children and young people with severe learning and physical disabilities. We’ve worked closely with Tudor House over the years, and more recently, funded a sensory log cabin for their garden.
This summer, we’re funding holiday outings for the young people who rely on the service provided at Tudor House. These experiences will allow them access to a variety of exciting outings in further afield places, offering the same opportunities as their non-disabled peers.
Many of the young people at Tudor House have limited social and leisure opportunities when they are at home. This can de due to the parent or carers inability to manage their behaviour, or physical support requirements whilst out in the community.
12 of the young people cared for at Tudor House will get to enjoy days out at Arundel Wetlands, the Bluebell Railway, and a trip to London this summer, amongst many others.
Summer activities at Drove Road
Drove Road is a respite and residential service for young people in Brighton. They care for youngsters aged 8-18 years old with autism, learning disabilities and challenging behaviour. Over the years we have worked closely with Drove Road and have previously funded a brand-new garden and outdoors activity space.
This summer, we’re funding day trips and activities for the young people who rely on the service provided by Drove Road. These experiences will help boost self-esteem and raise their social enjoyment levels, as well as providing a positive contribution to real-life skills.
Many of the young people at Drove Road have limited social and leisure opportunities. Days out can be very expensive and often parents do not feel comfortable or confident in organising trips to busy public places due to the level of their challenging behaviour.
10 young people from Drove Road will benefit from the summer outings. They will enjoy days out at Drusillas, Borde Hill Gardens, and Chessington World of Adventures, to name just a few.
Paediatric Orthopaedic Emergency Virtual Clinic
A new service is being developed at the Royal Alexandra Children’s Hospital in Brighton, to support children with suspected fractures. We’re fundraising to provide an alternative solution to young people who are required to travel to the standard fracture clinic from the Alex.
The children’s hospital provides a twice-weekly fracture clinic for patients who have been referred from the Children’s Emergency Department (CED). The clinic sees almost 5,000 young patients per year.
The new model will mean that X-ray’s are reviewed by a consultant orthopaedic surgeon and an individual plan will be made for each child. Senior physios will then liaise with patients and their parents, backed up by online information and videos so that children have a visual understanding of what is happening.
Overall, the aim is to improve child safety and to reduce the numbers of young people and their families that have to travel to the standard fracture clinic. The adult orthopaedic department has been running a virtual clinic for six years, winning national awards and recognition for improving patient care and innovation, so with our funding, the same process can be rolled out across the Alex.
Function First Service at the Alex
Following a two-year pilot for the Function First Service at the Royal Alexandra Children’s Hospital (the Alex) in Brighton, we’re fundraising so that the service can be made permanent.
The Function First team (also known as the Complex Symptoms Service) is a multidisciplinary team of specialised professionals, who provide a service for children and young people with medically unexplained symptoms.
The service is the first of its kind in the UK, bringing together all forms of medically unexplained and/or functional illnesses under one umbrella. The First Function team want to ensure that they are not just an evidence-based service, but a pioneering and evolving one that contributes to ground-breaking research.
Having a permanent service like this for children and families to access is of huge importance and benefit to the young people within the catchment area of the Alex across Sussex. The team aim to provide the best possible care and successful outcomes for the patients they treat and we are proud to become part of that.
The Vermont Oxford Neonatal Database
We’re supporting the Trevor Mann Baby Unit (TMBU) in Brighton, by providing funding for access to the Vermont Oxford Network (VON). It is a worldwide community of professionals working together to improve neonatal care, who share the same vision; to work together to give infants the best possible start, so that every new-born and family achieves their fullest potential.
We’re fundraising so that the TMBU can become a member of VON for an initial one-year taster period, with the aim to become a long-term member. Becoming a member of VON will facilitate benchmarking of outcomes for premature babies, so that the TMBU can continue to provide exceptional care for new-born infants and their families.
Therapeutic Horse Riding at Chailey
Chailey Heritage Foundation is a pioneering charity in East Sussex, dedicated to enriching the lives of young people with complex physical disabilities and health needs. Chailey creates possibilities for children and young people with complex disabilities, allowing them to access and experience things which they wouldn’t be able to do on their own. Services provided include a special school, residential facilities, transitioning services, a therapeutic care farm and therapeutic horse riding.
In 2017 during our 50th anniversary year, we provided £50,000 of funding to Chailey for the D.R.E.A.M. Centre Appeal – a huge all-weather indoor activity centre where children and young people can take part in sport related activities. This year, we are pledging our support to Chailey once again, by funding their specialist therapeutic horse-riding programme.
The aim of the project is to provide an educational and fun activity for the young people at Chailey. Using the movement of the horse, they are able to integrate physical activities and therapy into young people’s day in a unique way. The programme can support a wide spectrum of children with complex physical disabilities and health needs.
26 young people from the school are currently able to ride regularly, with more who are keen to start, and sessions are in high demand. The additional funding we’re providing will mean that Chailey can run extra sessions to offer therapeutic riding to more pupils.
The Rockinghorse Activities Programme at Chalkhill in 2019
We’re supporting Heads on and the Sussex Partnership NHS Foundation Trust by funding the annual Rockinghorse Activities Programme for young people at Chalkhill Child and Adolescent Mental Health Unit. Based in Haywards Heath, Chalkhill is Sussex’s only mental health inpatient unit for children and young people with serious mental health conditions.
Since 2015, we’ve funded the programme for young people to benefit from activities-based projects on and off site as part of their treatment for acute mental health disorders and emotional difficulties, such as depression, eating disorders and psychosis.
We have visited Chalkhill many times and are always blown away by the dedication and support of the staff. Our most recent visit was in March when we were joined by one of our major donors to see first-hand how their funds are making a huge difference.
Nik Mansfield, Matron at Chalkhill, provided us with some wonderful feedback, she said: “The Rockinghorse Activities Programme has made such a difference to the support we are able to give to the young people that we work with, and really compliments the clinical work and education programme that we provide.
“The activities are varied, ranging from graffiti workshops to professional cup-cake decorating. We also have an enrichment programme which is available for the young people who are able to go off-site, which includes activities such as animal care and rock climbing.
“Rockinghorse’s funding has also helped us to buy self-soothe and distraction items to give young people something physical that they can use to reduce their distress and be part of helping to prevent them from self-harming. One of the most recent items they have funded is weighted stuffed animal toys which young people can place on their lap. Each toy applies calming pressure helping to provide comfort, reduce excessive fidgeting and support improved focus and concentration.
“We are so grateful to Rockinghorse for the support they have given and continue to give us here at Chalkhill. Many of the young people we work with are inpatients who aren’t yet well enough to go home for periods of leave. Rockinghorse’s generous contributions make such a difference to the experience that we are able to give them, helping to provide the therapeutic benefit of meaningful and enjoyable activities.”
Chalkhill Activity Days
In addition to the activities programme mentioned above, this year we’ve also pledged to provide funding to Chalkhill specifically for activity days in a woodland setting. This project aims to bring together 13-20-year-olds with severe mental health difficulties in a supported environment, so that they can learn a range of wood craft skills at an outdoor site in Lewes.
The aim of the project is to bring out individual strengths, encourage self-confidence and inspire young patients to feel a sense of purpose and belonging. Key to the young people’s recovery is building positive self-image through involvement and engagement with new things – many of which we take for granted – to help them in their recovery journey.
In six months of the project, it is hoped that 72 young people can be supported in dealing with the physical or mental challenge they face. Their severe mental health challenges can lead to behaviours such as avoidance of social contact and falling into self-defeating mindsets. The project will enable patients to participate in an outdoor experience in order to increase their mental health, well-being and social network.
Yoga project at the Alex
As the official fundraising arm of the Royal Alexandra Children’s Hospital (the Alex) in Brighton, we raise money for life-saving and cutting-edge medical equipment as well as providing funding for therapies and services. As part of our ongoing commitment to the Alex, we’re funding a Yoga Project to offer weekly sessions to young people with chronic medical conditions.
The regular yoga sessions will actively engage young people aged 12-18-years-old in developing their resources and skills in self-care, managing anxiety and stress in relation to their medical condition. The sessions have been developed in consultation with young patients and a range of professionals so that it can meet the specific needs of participants.
Initial feedback shows that the yoga sessions are an effective way to increase physical activity, gain strength, flexibility and balance. The sessions have also proven to help with stress and anxiety, leaving young patients to feel supported and more resilient. Due to the complexity of the medical conditions of some of the young patients, a trauma sensitive yoga approach has been developed.
Kangaroos Club and Holiday Playscheme
Kangaroos is a charity based in Mid Sussex that was founded in 1994. It provides a range of fun, inclusive social and leisure activities in the local community for children and young adults with learning disabilities as well as additional physical, sensory, medical and behavioural difficulties. The charity provides activities and social opportunities so that children and young people can fulfil their emotional, social, cognitive and physical needs.
We’ve pledged to support Kangaroos by providing funding for the PALS (Play, Activities, Laughter and Support) Saturday Club and Holiday Playscheme. The PALS project runs throughout the year and offers a range of activities to children aged 6 to 12 years-old with severe learning disabilities.
The majority of children with learning disabilities are unable to access mainstream activities and do not usually get opportunities to spend time with their friends outside school. PALS provides a social and recreational opportunity in a safe and structured environment, supported by experienced, qualified staff and young volunteers,
Activities vary from days at Kangaroos as well as trips to a wide range of venues, and they also offer overnight stays during school holidays and half-term breaks. They support more than 60 children with a vast range of disabilities including autism, cerebral palsy, epilepsy, complex visual and hearing impairments, limited mobility and profound communication difficulties.
We’re proud to fund the PALS playscheme to benefit 29 children with disabilities aged from 6-12-years-old. We’ve received some lovely feedback from Kangaroos Fun Disability Club to let us know that young people enjoyed an action-packed February half-term week playscheme thanks to our funding. The children attending have a range of disabilities and all the activities were planned for their enjoyment and to meet their needs. They were supported by experienced staff as well as young volunteers.
The children enjoyed a trip to The Triangle Leisure Centre where they took part in rock climbing and challenged themselves with a wide range of different climbing activities. They also visited Fishers Farm where they enjoyed the huge soft play and sensory areas, including the large slides and musical instruments, as well as a variety of activities set up at their Ashenground Community Centre throughout the week.
The Mind Clinic
We’re the official fundraising arm of the Royal Alexandra Children’s Hospital (the Alex) and a vital supporter of the neighbouring Trevor Mann Baby Unit (TMBU) in Brighton, funding equipment and services over and above what the NHS is able to fund. This year, we’ve pledged to provide funding for a service called The Mind Clinic to benefit staff at both hospitals.
The Mind Clinic provides counselling services and pastoral care that staff can access in work time or when they are off duty. The purpose of the clinic is to provide a non-performance related counselling service that is freely available to approximately 149 doctors, nurses and non-clinical staff who work at the frontline of the NHS.
Neonatal HSV research project
We’re funding a research project looking at the impact of the Herpes Simplex Virus disease (HSV) in infants younger than 90 days of age. Led by Dr Katy Fidler, Consultant Paediatrician in Infectious Diseases at the Royal Alexandra Children’s Hospital (the Alex) in Brighton, doctors are keen to further research the devastating disease which has a high mortality rate in neonatals.
HSV causes many different types of infections and illnesses and is very common in adults and children, when it can often cause a cold sore. However, neonatal HSV makes a newborn baby very sick. It is a rare but devastating disease and many babies affected can die or will suffer from long-term neurological problems.
The study we’re funding will provide key information about the number of cases in the UK, determine which babies are most at risk and how the risks can be reduced. Their research will also look at how current treatments can be improved to achieve better outcomes for babies who have contracted the disease through their mother during pregnancy or at the time the baby is born.
As of January 2019, we’re pleased to announce that thanks to Rockinghorse, enough funding has been secured to finance the first full research project into neonatal herpes for over 25 years. This surveillance project will monitor the number of infections and mortalities from neonatal herpes in the whole of the UK and Ireland over two years.
The project will be jointly led by Dr Katy Fidler of the Royal Alexandra Children’s Hospital and Professor Paul Heath of St George’s University at London Hospital. Approval of the project has been granted by the British Paediatric Surveillance Unit who will facilitate the research and the team are ready to proceed. In addition to this, there will also be a programme of education and training alongside the project, to be initially trialled in Sussex.
TMBU heartbeat research project
At the time of delivery of a baby, midwives and neonatal staff listen to a baby’s heart to monitor its heart rate to ensure the baby adapts well to a life outside the womb. Listening and detecting a newborn’s heart beat can be difficult, especially if the heart rate is low and the baby is poorly and needs breathing support.
At present, a technique called pulse oximetry is used to detect a baby’s heart rate and oxygen saturation in the blood. The device uses a light sensor which is wrapped around a baby’s hand or foot and can take around a minute to pick up a good signal if the heart rate is normal – although this can be difficult to obtain if the heart rate is very low.
Together with Brighton and Sussex University Hospitals NHS Trust (BSUH), we are funding a research project enabling consultants at the Trevor Mann Baby Unit (TMBU) to test an innovative heart rate monitoring device that will assist midwives and neonatal staff to measure the heart rate during the baby’s first minute of life. The device is based upon Electric Potential Sensing (EPS) technology which will provide a non-invasive, reliable and quick to administer solution to measure the heart rate of a baby.
In March 2019, we heard from Dr Anton, who is leading the heartbeat research at TMBU. Dr Anton and his team are working closely with Dr Elizabeth Rendon-Morales and her team from the Institute of Sensor Technology at the University of Sussex, to develop a novel sensory prototype.
Together, the team have so far completed a comprehensive review about existing devices used to monitor heart rates in babies. They’ve conducted in-depth interviews with doctors, nurses and midwives across TMBU and the labour ward to discuss their opinion on the prototype and pilot scheme on the unit and in the delivery room.
The next steps for the team are to develop the prototype that will detect babies heart beats after birth using the new ECG sensor dubbed the ‘Neo-sense’, followed by a pilot study in stable babies which they are hoping to start in September 2019.