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…
Battery pack for Resuscitaire
The Trevor Mann Baby Unit (TMBU) looks after many premature babies who need special help soon after they are born. Being moved from the maternity ward to the TMBU requires a special piece of equipment called a resuscitaire which keeps babies warm while in transit.
This battery pack provides the power for the resuscitaire, allowing care to be started in the theatre as soon as the baby is delivered, and will reduce delays in getting the babies the best care possible.
Magic Wand anaesthetic machine
Many children are needle phobic or anxious at dental appointments, which can make treatment more difficult for the dentist to administer.
The Magic Wand that we are funding is a new pain-free method of delivering anaesthesia which uses a small, very fine needle to deliver a slow dose of anaesthetic, controlled by a computer. This means that the anaesthetic is delivered only to the tooth requiring treatment, so the child no longer experiences numbness across the face.
Due to an increase in patient monitoring, staff at the Alex are in need of more Dinamap monitors, which help staff assess patients blood pressure, heart rate, oxygen and temperature.
Having more monitors means that staff aren’t wasting valuable time searching for them and will ultimately improve the care provided and reduce the risk of cross contamination.
The monitors are portable and lightweight, making them easy and quick to use on busy wards.
Asthma Controller Sensor
Last year we funded 18 asthma inhaler monitoring devices which are attached to inhalers to help monitor how children use their medication
Asthma is the most common long-term medical condition affecting children in the UK. The best way to manage this condition is to make sure patients regularly take their preventative inhaler. However, a common, and preventable problem, is children forgetting to regularly take this medication.
As a way of combatting this problem, we are continuing a great piece of equipment that aims to help families and their medical teams have clear information on how their medication is being used. The Hailie sensor attaches to asthma inhalers, specifically the preventative version, via a Bluetooth link to a smartphone app and enables children and parents monitor their mediation.
It also provides reminders for patients to take their puffer at the correct times and links to a clinical portal for doctors to see how their patients are getting on.
The use of these devices has shown to increase the adherence to medication by 59%, reduce hospital admissions for asthmatic children by 80% and reduce the use of their reliever medication by 45%.
This all works towards children’s general quality of life as well as reducing health care intervention and hospital admissions.
Neonatal ventilators at the Alex
We have previously funded some ventilators for the High Dependency Unit at the Alex, providing support for hundreds of children during the past year.
We are now funding a neonatal version of the ventilators, specifically designed to help babies under 5kg be nursed at the hospital, avoiding transfer to hospital in London, therefore reducing the length of time they need to stay in hospital.
Resuscitation training equipment in Chichester
Taking a baby or child home from hospital after being acutely ill can be a terrifying time for a parent. Leaving behind the security of knowing that there are trained medical and nursing staff on call in case of any concerns can be a worrying time for families.
Which is why we have agreed to fund some new resuscitation training equipment for St Richard’s Hospital in Chichester.
This equipment, including baby and child sized manikins, will enable staff to deliver training for parents taking their children home, helping to reduce delays in discharging them and provide that much needed reassurance that they have all the skills they need to manage independently.
Replacement Dental X-Ray Machine
The previous machine at the hospital is 14 years old and the images it produces aren’t as high quality and effective as they could be for the medial staff. Despite putting in a range of contingencies, it has reached the point where the machine really needs to be replaced.
This new machine will be used to take x-rays of the teeth, head and neck, and can accurately diagnose a range of different conditions. Once in place it will be able to quickly and effectively treat around 800 paediatric patients each year.
Mock MRI scanner
Having an MRI scan as an adult can be a noisy, frightening experience so imagine how it feels for a small child? Not only is it really difficult for them to keep still for the 30 minutes that the scan takes, but the whole process can be an incredibly daunting one.
Giving young children an opportunity to see and understand how these machines work and what it feels like before they have their own scan could really help reduce their anxiety and make it easier to perform the scans.
So, we are funding a small mock MRI scanner so that children aged between three and six can see how they work and understand the process. As Orthopaedic Consultant Thomas Crompton from the Alex explains: “If children have seen a miniature scanner, perhaps even scanning their teddy bear, they will then be able to have scans without the need to have a general anaesthetic.”
This will then hopefully make the whole process much more relaxed for both the patient and their parents.
Chalkhill Activity Programme
We have been supporting Chalkhill Child and Adolescent Mental Health Unit in Hayward Heath since 2015 and we’re happy to report that we’re carrying on this support for another three years.
Chalkhill supports young people who are experiencing acute mental health and emotional difficulties such as depression, eating disorders and psychosis.
Our funding provides the Activity Programme at the hospital, a year-round therapeutic activities programme which compliments the clinical work and the County Council education programme at the hospital.
This programme gives young people who are experiencing serious mental health issues the opportunity to take part in a range of normal experiences such as photography, yoga, creative arts, gardening and many more.
All of these activities help the young people increase their self-esteem and confidence, improve their health and well-being, and develop skills which will be beneficial for education, vocational training and independent living upon leaving the unit.
Wall mounted breastfeeding pumps
We are funding three wall mounted breast pumps in the TMBU, aiming to encourage more mothers to breastfeed. Having these pumps easily accessible in the unit will make it easier for new mums to express their milk in comfort and privacy.
Babies in the TMBU are at higher risk of developing complications in their gut which can be helped by being fed breastmilk and it also reduces the risk of other problems including diabetes allergies ad eczema.
Parent room refurbishment
Having a quiet, comfortable space for parents within the Special Care Baby Unit (SCBU) in the Princess Royal Hospital in Haywards Heath will allow new parents to have some quiet time away from the ward to feed their baby or have some quiet time.
Which is why we are funding the refurbishment of a neglected room in the SCBU, which will also function as accommodation for parents when needed.
Baby weighing scales
Being able to accurately weigh babies during various clinics at the outpatient’s department at the Alex means that appointment can run more smoothly, and staff can quickly identify any potential issues.
These two new sets of scales will be a great help to staff at the hospital, reducing the need for them search the department for the equipment they need.
Support for cancer patients and their siblings
Having a brother or sister spending time in hospital can be worrying and stressful for their siblings. They don’t always know what’s going on, what treatment their siblings are having or whether they will get better.
Children are often much more perceptive than we realise and can be greatly affected by worrying about their brother or sister, especially if they don’t know what’s happening.
In order to offer some support, we are funding a range of items that parents can use to help their other children. These include the amazing Medibears, bespoke teddy bears which are created with matching medical equipment such as feeding tubes and central lines, which help siblings to understand what treatment their brother or sister is having and help reduce their anxiety.
Along with these bears, we are also funding 50 Beads of Courage packs, which are designed to offer recognition of siblings’ care, bravery and courage.
And finally, we are funding 35 hand made hair turbans for children losing their hair due to cancer treatment. The Tot Knots are made using beautiful Liberty printed fabrics and can improve children’s confidence and wellbeing.
Sensory equipment and arts and craft materials can really help psychotherapists and psychologists in their individual or group work with children to help reduce anxiety. They can help children explore their thoughts and feelings and distract them from pain.
So, we are funding a range of this kind of equipment along with some Buzzies, small devices that attach to patient’s ankles that emit a light buzzing sensation, which helps distract children from pain or anxiety.
Baby friendly initiative
The Baby Friendly Initiative (BFI) is a global programme developed by UNICEF and the World Health Organisation, aimed at improving infant feeding in health care settings.
We are funding the first year’s programme costs at the TMBU, which will help staff understand the best ways to encourage and support new parents to breastfeed their babies.
Taking part in this programme and achieving the accredited status will help TMBU support parents to understand the importance of providing breastmilk to pre-term or poorly babies.
Push along cars
We have previously funded several electronic cars for children to “drive” themselves to theatre. We are now funding two additional push along cars for younger children.
These cars have handles so they can be pushed by parents, but they will have the same impact: reducing anxiety and helping to create a more positive experience of hospital for young children.
Sensory tower, toys and iPads
The sensory tower and sensory toys will provide stimulation to babies and young children who have to spend several months in the High Dependency Unit, often with periods without their parents being present.
And the iPads will provide valuable distraction during clinical procedures and help give children something fun and interesting to watch during long hospital stays.
When babies are in hospital it can sometimes be difficult for them to sleep, especially if their parents can’t be with them. It can also be difficult for members of staff to have enough hands to rock all the cribs to sooth their little patients.
But with some Rockit rockers which we are funding, staff can attach these clever devices to the cots in the wards and they will gently rock the baby to sleep.
We are also funding some ZED sleep aids which are attached to mattresses and mimic the feeling of being in a car. Both of these items help promote healthy sleep patterns and create a calming atmosphere in the hospital.
Children’s Emergency Ward
The Emergency Department at the Alex sees lots of children everyday and their observation rooms are used to assess patients’ illnesses.
Sometimes patient’s can be quite upset or in pain so having some things to distract them is really helpful for both them and the medical staff treating them.
Which is why we are funding some new wall mounted toys and stickers to help distract children during their assessment and treatments, reducing their anxiety and provide a more positive experience.
Adolescent room refurbishments
We often think about how smaller children manage their time in hospital, but the Alex sees young people up to the age of 18, and teenagers often have very different needs from the younger patients.
Many teenagers coming to the hospital can be in crisis with severe mental health issues or wanting a bit more privacy, so it’s important that they have some space to go that’s calm and safe.
Which is why we are refurbishing two rooms in both the Emergency Department and Medical Ward at the Alex, specifically for this age group.
The Play Team at the Alex are the one stop shop for toys for every department within the hospital. These are so important for children, whether they are there for a quick visit or much longer stays, as toys can provide wonderful distraction and a great way to use their imagination.
The Play Team suggested that providing eight toy chests for all the departments at the Alex, to be filled with smaller toys, would make it easy to distribute them to as many children as possible.
And then for more specific sensory toys, or birthday presents for children in hospital for their special day, we are also giving the Play Tea, some vouchers to be able to purchase items online.
Sensory room at Tudor House
Tudor House is a specialist residential support service for young people with severe learning and physical disabilities. The service offers short breaks for young people from the ages of 8 to 18, many of whom are autistic.
Part of the support they offer is a sensory room which provides sensory stimulation and a safe environment where they can manage their emotions and feelings if they become anxious of worried.
Their current sensory room is in real need of a facelift, so we are funding some new, interesting equipment including a musical waterbed, sensory floor tiles and light up panels. Once it’s completed, this updated space will help so many children during their stay at Tudor House.
Sensory room in the OT Hub
The Specialist Occupational Therapy Team in Brighton works with children attending the Pupil Referral Unit (PRU) to assess what additional needs and support they may have.
Children accessing the PRU may have sensory motor difficulties, speech and language issues and learning disabilities which mean they need additional support to re-enter mainstream school.
We are funding a new sensory room at the PRU so that the OT team can work with these children in a safe, therapeutic space which in turn enables them to accurately assess how best to support their development.
We are funding some yoga sessions for young patients at the Alex with ongoing medical conditions. Often young people can feel failed by their bodies and have a difficult relationship with them, especially after the trauma surgery.
These sessions, run by the Yoga Project, aim to give the young people an opportunity to experiment with breathing, moving, strengthening, stretching and resting.
This can help them understand how their body reacts to stress or anxiety and learn how a few simple yoga postures can help them let go of this stress, sleep better and generally feel more comfortable with themselves.
We are continuing to fund weekly art therapy sessions for young people living with a range of ongoing chronic medical conditions, which have resulted in self harming behaviours, severe anxiety, depression, lack of confidence and panic attacks.
The group provides a space to explore and reflect on powerful and important feelings and issues based on individual and collective experiences and concerns, many of which have recently been around lockdown and how this has impacted on their mental and physical wellbeing.
The aims of the weekly session include building young people’s resilience and coping strategies, reducing isolation, and of course exploring their emotions through creative expression.
As one participant explains, the sessions have a really positive impact: “I am so grateful for art therapy as it has given me a time of the week to reflect and get all my worries off my chest. Saskia brings so many amazing art materials to the group which has made me really start to enjoy making art. I find art therapy very relaxing and calming and always leave with no stress.”
Delivery suite equipment for the Princess Royal Hospital
Having a calm, relaxing environment when you are giving birth can make a real difference to a woman’s experience of labour.
Which is why the delivery suite at the Princess Royal Hospital in Haywards Heath is being given funding for a range of new equipment to help their clients feel as comfortable as possible.
This includes fairy lights, new bedside lamps and some breast-feeding pillows. The lighting will make a huge difference to the ambience within the delivery rooms and will enable women and their partners to sleep while still allowing the midwives to see what they are doing.
Hurstwood Park Xbox
Hurstwood Park is home to the Department of Clinical Neurophysiology at the Princess Royal Hospital in Haywards Heath. One of the regular procedures that they perform are Electroencephalograms (EEG), recordings of brain activity, used to diagnose and monitor a range of conditions affecting the brain.
Whilst these EEGs aren’t painful, they do involve having 22 electrodes attached to the child’s head which can be difficult for some children to understand or deal with. The scans can be up to 90 minutes long and the patient needs to be as still as possible so having something to distract them is really important.
So, we are funding an Xbox so that children can watch DVDs, play games and listen to music during the scans. This will provide valuable distractions for the children and subsequently enhance the quality of the recording and improve their ultimate diagnosis.
Woodland wellbeing days
The Psychotherapist in Paediatric Psychological Support Service (PPSS) at the Alex is running some Woodland Wellbeing Days, funded by Rockinghorse, for children with long term medical conditions.
These sessions are aimed at helping to build self-esteem, promote emotional resilience and give children a fun day out that helps build their confidence. They are also a great way for young people to meet others living with chronic medical conditions, helping to reduce their sense of isolation and difference.
Due to the Covid-19 pandemic it’s been much harder for groups to meet indoors. And as we still don’t know when these restrictions are likely to ease, the PPSS decided to make use of the outdoors so they can still offer a type of therapeutic support.
The sessions will take place at the wilderness site in Stanmer Park in Brighton and will involve playing games, building dens and learning how to light fires using steels – all surrounded by and involving nature.
Teenage Support Group at the Alex
We’re pledging our ongoing support for the Teenage Support Group at the Royal Alexandra Children’s Hospital (the Alex) in Brighton, during 2020. The group was set up to benefit teenagers living with ongoing chronic medical conditions who are outpatients at the hospital.
The weekly group uses art therapy to provide a safe, confidential space where young people can explore their thoughts and feelings about living with a chronic medical condition. The group supports teenagers living with conditions such as; epilepsy, arthritis, diabetes, ehlers-danlos syndromes, chronic pain, and gastro-intestinal problems.
Weekly sessions support the young people with anxiety, depression, and trauma that often accompanies chronic medical conditions. Each group caters for between 6-8 members and one-to-one sessions are also provided. Art Psychotherapist, Saskia Neary, works alongside the Paediatric Psychological Support Service to address the issues presented by members of the group.
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.”
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.
Since the beginning of June, yoga practitioner Saskia has moved the yoga sessions online – delivering both group and one to one weekly sessions. Despite some challenges involved with delivering trauma sensitive yoga virtually, they have been working well. The one to one sessions have proved successful for the participants and proved to be really helpful for connecting with parents too.
Feedback from one parent about the sessions included; “We are so very grateful to Saskia, she has done so much for E. Being extremely hypermobile and having eczema and not being the best sleeper have led to real challenges in her behaviour at times but having that sacred time and space once a week has been invaluable to her. At a time when most kids were pretty lost, to be remembered by brilliant Saskia with the kind support from Rockinghorse it gave her a sense of being cared about, a reminder of how important it was to do yoga a long with an emotional release.”