University Hospitals Sussex Directory of Services
Amaze is a charity that gives information, advice and support to families of children and young people with special educational needs and disabilities (SEND) in Brighton & Hove and Sussex. We also support young people with SEND up to 25. Amaze is funded from a variety of sources: local authorities, central government, health services, trusts and foundations, businesses, public donations and from fundraising events such as the Brighton Marathon and our annual Big Cheer comedy night. Their vision is a world where families with children and young people with special educational needs and disabilities are valued, included in their community and supported to thrive.
Brainwave is a charity that exists to help children with disabilities to achieve greater independence by aiming to improve mobility, communication skills and learning potential through a range of educational and physical therapies. The Brainwave Therapy Programme aims to develop the maximum potential of each child by taking an integrated approach to their physical and cognitive development and by aiming to enhance a child’s social skills and emotional well-being. They provide two full days, with two therapists for an initial assessment, followed by one-day reassessments every 4-6 months.
Chailey Heritage Clinical Services offers flexible specialist services for children and young people with complex neurodisability and provide clinical support to children and young adults in mainstream and special schools, their residential environment, with acquired brain injury and more. They work as a multi-disciplinary team (MDT), including therapists and rehabilitation engineers (RE), nursing and medical staff in order to assist and enable our young people. Research underpins their problem solving approach and they are leaders in fields such as posture management, powered mobility learning, nutrition, sleep and consulting with children, young adults and their families. They have a range of specialist outpatient clinics, which can be accessed via referral from an NHS clinician.
T: 01273 722112 ext 7726
W: sussexcommunity.nhs.uk
W: Online Directory
Referral via health professional only
Every 30 minutes, a child or young person will acquire a brain injury. Bones can mend and scars can heal, but a brain injury stays with you for life and impacts on everything you think, feel and do.
The Child Brain Injury Trust is a leading voluntary sector organisation providing non-medical services to families affected by childhood acquired brain injury across the UK. A dedicated team of professional Child and Family Support Co-ordinators and volunteers give their expertise, commitment and enthusiasm to help families get the support they need.
You can contact CBIT at any time, but generally the earlier you make contact, the quicker appropriate systems of support can be put into place.
A burn injury is for life. The scars are physical as well as psychological and can present life long challenges. The Children’s Burn Trust is a charity that aims to make those challenges easier to bear, and to help children and young people to grow up and lead as happy and healthy a life as possible.
The NHS provides good emergency care for burn and scald accidents, but the post trauma or follow up care is significantly under funded. The Children’s Burn Trust is dedicated to helping NHS staff to restore the individual to their pre-injury condition and potential in terms of aesthetic, function and intellect.
They are able to provide help with rehabilitation, finances, treatment and emotional support.
When a child becomes ill or disabled, the pressure on a family can be significant. It can be a struggle financially, emotionally and physically for families raising a disabled or seriously ill child. The Family Fund provides financial support to help break down many of the barriers families face, improving their quality of life and easing the additional daily pressures. In 2016, the Family Fund helped over 88,000 families with grants totalling more than £33million.
Beginning with the most vulnerable, those on low incomes, and considering all conditions against a disability criteria, the Family Fund aims to make a difference to outcomes for disabled or seriously ill children and young people, together with the lives of the families raising them across the UK.
Grants are available for a wide range of items, such as washing machines, sensory toys, family breaks, bedding, tablets, furniture, outdoor play equipment, clothing and computers.
Rainbow Trust supports families who have a child aged 0-18 years with a life threatening or terminal illness and need bespoke support.
Rainbow Trust Family Support Workers provide a life line to families and children. They support the whole family including parents, carers, the unwell child, brothers, sisters and grandparents. They bring support and help to families who need it at home, in hospital and in the community. Any family can receive support from the moment of their child or young person’s diagnosis. The kind of support they provide is hugely varied and depends on your needs.
Whether it is learning to ride a bike, drive a car or go rock climbing, Reach is here to help.
As a charity which supports parents, children and young people who are affected by upper limb deficiency, Reach provides advice and guidance to parents and teachers, as well as providing a support group run by families who have had similar experiences.
T: 08451 306225
T: 0203 478 0100
W: reach.org.uk
E: reach@reach.org.uk
The Children’s Trust runs a range of specialist care, education and therapy services for children and young people from across the UK. It is best known for running the UK’s largest rehabilitation centre for children with acquired brain injury (ABI) and has three buildings at its Tadworth Court site, Tadworth, Surrey within the M25 motorway, where children can receive world class rehabilitation. The Children’s Trust offers rehabilitation services to NHS patients and on a private fee paying basis.
In 2012, The Children’s Trust launched an on-line support centre for families of children affected by acquired brain injury – The Brain Injury Hub. This website offers a wealth of practical advice and information about a condition that’s often misunderstood. There is also an on-line forum giving families the opportunity to share their stories and experiences. Go to: braininjuryhub.co.uk
Hearing the news that your child is likely to die young is devastating. It’s an incredibly distressing and confusing time. For tens of thousands of families in the UK this is the reality. Families often say that they can’t find the information they need about help and support available locally. They can feel alone and isolated, and may have to fight to get vital care and support.
Together for Short Lives is a nationwide charity that supports families and health professionals by signposting them to information, help and relevant services. It is also there for you if you just need someone to talk to.
Whizz-Kidz provides powered wheelchairs, manual wheelchairs, sports wheelchairs, trikes and buggies to give young people with a physical disability independence. But the wheelchair is just the start; they also run clubs, camps, wheelchair skills training and work placements to help develop confidence and independence in children.
Whoopsadaisy is a small, Sussex charity for children with cerebral palsy and other motor conditions, dedicated to helping them to reach their full potential. Their special programme of Conductive Education is tailored to help each child overcome everyday challenges – step by step. Based in Preston Park, we support babies and children in Brighton & Hove and across Sussex. All sessions are full of fun, with singing, games and creative activities. Whoopsadaisy offers a Parent and Child group (0-5 yrs), and a Saturday group and Holiday Club (5-12 yrs) for children with physical disabilities.