This year, despite the challenging circumstance, we have continued work with local hospitals, respite centres and support projects to fund projects focusing on improving children’s physical and emotional well-being and offering extra help for parents and carers.
We have also funded a range of equipment specifically related to the Coronavirus pandemic, helping both the physical and psychological issues affecting children during the health crisis.
On this page you can find out more about these projects and how they have helped children and their families across Sussex…
Covid 19 Projects
Individual Bedside Paediatric Stethoscopes
We are funding the purchase of 10 paediatric stethoscopes for the Royal Alexandra Children’s Hospital Critical Care Unit.
Stethoscopes are a frequently used piece of equipment on the Critical Care Unit as they frequently take care of children with respiratory conditions. However, these particular versions are much more specialised than the adult equivalent.
Firstly, they have a uniquely designed chest piece which is perfect for the patients’ smaller anatomy. They have a non-chill rim which helps not to startle patients if they are sleeping when doctors need to check their breathing and uniquely shaped earbuds which mean doctors can hear chest, heart and bowel sounds more accurately.
The stethoscopes will be kept by individual bedsides, engraved with the units’ details, so they are always there when doctors need them. This also reduces the chance of cross-infection, something that Dr Oli Rahman feels is really important during the current crisis; “It is much better if each room has its own bit of kit to minimise transfer of infection. With the current COVID-19 infection it’s become clear that this sharing of equipment is not ideal and may contribute to the spreading of infection from one patient to another.
“In fact, I would go so far as to say that it is now mandatory that we keep stethoscopes of a decent quality in each bed space on HDU.”
These specific stethoscopes will provide our nurses, doctors and physiotherapists with the tools they need to accurately assess, diagnose and treat all our paediatric patients.
Portable Lung Function machine for Sussex children
We’re providing funding for a second Vyntus Spiro portable lung function machine. The machine enables the accurate diagnosis and continued measurement of lung function in children with a range of different conditions such as asthma and cystic fibrosis.
Dr Akshat Kapur explains why this machine so important to the care provided by his team; “We are expanding our high-quality children’s cystic fibrosis and chest centre to provide care to children in West Sussex. As a centre of excellence, we require high standard medical diagnostic equipment, like this machine, to provide accurate, reliable and reproducible results.
“As we branch out to be the lead of a respiratory network on the South Coast, it is essential that we maintain our current standard of care throughout and need a second machine to enable us to do this.”
This machine will enable trained staff to obtain accurate, reliable and reproducible results, especially as the interface is so child friendly, in wards, outpatient clinics and urgent clinical reviews. With this lung function machine, medical staff can provide all Sussex children uniform high-quality care, even when they are off site from the Royal Alex.
Parent Camp Beds at the Royal Alex
We are funding the purchase of 12 camp beds for throughout the Royal Alexandra Children’s Hospital in Brighton so parents are able to stay with their children during their hospital stay.
During the current Covid-19 virus situation, the Royal Alex are having to use bed-spaces that they may not ordinarily have to use. They are also using more space than they would normally for sick children which means that there is little or no space for parent’s to be able to stay with their children.
A hospital stay can be scary for anyone, let alone a child, so knowing that they have the comfort and support of their parents being by their side is a great benefit to their recovery. However, if parents are having to sleep on a mattress on the floor, they aren’t able to get the rest they need to manage what can be a very stressful time.
These beds will not only help during the current situation but in the future as well and will mean that over 100 parents would benefit from their purchase.
Lynne Mould, the Ward Manager from the Paediatric Outpatients and Day Case Unit at the Royal Alex, recently let us know an update about the beds; “I’m very pleased to report that the parent beds generously donated by Rockinghorse have arrived. We are in the process of getting them unpacked and sorted but they will be of enormous benefit to parents across the Alex. A big thank you to Rockinghorse.”
Hopefully these beds will be prove to be helpful to parents and families of children at the hospital both now and in the future.
Ventilators for the Alex
Earlier this year, we launched an appeal to provide additional ventilation equipment for the Royal Alexandra Children’s Hospital (the Alex) in Brighton. We’re aiming to fund at least four more ventilators for the High Dependency Unit (HDU) at the Alex to help treat the hospital’s most poorly patients.
The ventilators are used to treat over 130 children and babies each year – most of these patients being under three years of age and facing a prolonged stay in hospital. In addition to this, disabled children often require respiratory support during their multiple admissions, and several long-term patients require constant ventilation on the ward, so the additional ventilators are needed as soon as possible.
Sensory Room at Downs View School
We’re funding a brand-new sensory room for young people at Downs View School in Woodingdean, Brighton. Downs View provides specialist education to children with severe learning difficulties and autism aged 4-16-years-old.
We’ve pledged our support to the school by funding an ASC (Autistic Spectrum Condition) focused sensory room to benefit around 155 children on the main school site. The space will help students to develop their communication and interaction abilities, in a dedicated area away from other distractions.
The sensory room will provide Downs View School with a much-needed education and intervention space which can support the most complex children. The room will include calming lights and music, switch-enabled toys, a magic carpet, and play equipment.
The ASC sensory room will also offer many benefits to children and families outside of school hours, and will be accessed after school, at weekends, and in school holidays.
Intellivue monitors for St Richard’s Hospital
We’re raising funds for monitors to benefit young patients at St Richard’s Hospital in Chichester. The Intellivue monitors will provide continuous monitoring of vital signs at the patient’s bedside. Each monitor will assess pulse oximetry (oxygen levels), blood pressure, and heart trace (ECG).
High dependency care is provided to a number of young patients simultaneously, often outside of the designated HDU (High Dependency Unit) cubicle. This means that portable equipment, like the Intellivue monitors are needed for these purposes.
Specialist monitoring is also required for neonates (newborn babies), so the monitors will be purchased for both paediatric and neonatal care too. They will benefit up to 300 young patients a year.
Mobile Magic Carpet for Hazel Court School
We’ve pledged funding for a mobile magic carpet which will be used by young people at Hazel Court School in Eastbourne. The school cares for young people aged 11-19-years-old who have severe complex needs and disabilities.
Hazel Court provides individual education programmes to enable young people to develop, progress and be as independent as they possibly can. The addition of a mobile magic carpet will enhance the learning opportunities for everyone at the school.
The magic carpet is a fantastic interactive resource that can be used by children of all ages and abilities. The interactive games and stimulation provided by the mobile technology, can be accessed by the 92 students at the school, wherever they are.
Equipment for Whoopsadaisy
We’re continuing our support for Whoopsadaisy by funding more equipment for the children they support. Whoopsadaisy helps children with physical disabilities to live life as independently as possible. They provide weekly under-5’s groups, Saturday sessions and holiday club for 5-12-year olds at the Whoopsadaisy Pavilion in Preston Park, Brighton.
In 2020, we’ve pledged funding for play and sensory equipment for the children, plus adaptations for some of their specialised furniture. Using the conductive education system of learning, Whoopsadaisy helps children with cerebral palsy and other motor disorders to build their physical, social and communication skills.
Every session provided by Whoopsadaisy is tailored to the needs and abilities of each child. At least 40 children will benefit from the equipment we fund in 2020.
Defibrillator for Seaside View
We’re providing funding for a defibrillator to benefit children and families who use the services at Seaside View Child Development Centre in Brighton. The centre assesses, diagnoses and supports children from birth to 19-years-old with additional needs; providing training and advice for parents and carers.
Statistics show that 270 children in the UK die each year after suffering a sudden cardiac arrest. 20% of these cardiac arrests will occur in a public place. Accessing a defibrillator within five minutes of a person having a cardiac arrest, increases their chance of survival by 74%.
Staff at Seaside view do not currently have access to a defibrillator. With over 100 children and parents/carers using the services at Seaside View each week, having a defibrillator on site will provide reassurance to staff and visitors.
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.
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.
Pod children’s entertainers at the Alex
We’ve teamed up with Pod Children’s Charity to fund a specialist Pod entertainer at the Royal Alexandra Children’s Hospital (the Alex) in Brighton. Pod provides professional magicians, balloon artists, and musicians to lift the spirits of young patients on the wards.
We believe that no matter where they are, children should always be children, so we’re working together to make a child’s stay in hospital as pleasant as possible. The Pod entertainers work with the specialist Play Team at the Alex, to ensure that they interact with patients on a level to meet their needs.
Play Team Manager, Amy Farmer, says, “The Pod entertainers are great at interacting with children and making them feel comfortable. The visits help to reduce anxiety for the whole family, making an admission a much more positive experience all round.”
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.
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.
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.