Supporting young people with complex health needs in a residential short break service: Xanthe’s story
Case study written by Clare Gent, Action for Children
Xanthe is a 15 year old young lady who has been using Action for Children's residential short break service in Hertfordshire called the Pines for five years. Her support plan identifies an allocation of 24 overnight breaks plus 24 after school (4.30pm to 7pm) or weekend and holiday day support sessions (10am to 4pm) per annum.
Xanthe accesses them flexibly depending on her wellbeing. Prior to this Xanthe and her family were accessing support from Keech House a hospice for children. However, as staff at the Pines have become skilled and confident the family have also become more confident and found they no longer needed to use the hospice.
Xanthe lives with her mum, dad and twin sister. Her older sister and brother now live away from home which makes it even more important that mum, who is the main carer, gets lots of support. Xanthe communicates through eye movement; facial expressions and noises and relies on staff supporting her to understand how these mediums serve as her communication tools.
Getting to know Xanthe
A key member of staff from the Pines was introduced to Xanthe and spent time getting to know her and her family, building a relationship and creating bespoke and detailed support plans to ensure we were able to mirror the level of care that was provided at home.
The staff made contact with all the key health professionals in Xanthe's team who endorsed the support plans. Once everything was in place Xanthe made some initial short visits with her family which were extended over a period of time as everyone built up trust and confidence.
The community children's nurse (based in the local SEND school that Xanthe attends) has provided training for staff in all clinical procedures: oral suction; gastrostomy feeding; administration of medicines via gastrostomy and emergency medicines for epilepsy. All staff have their competency reassessed by the nurse 6 monthly. Alongside this our accredited Administration of Medicines trainer (who is a key member of the team at the Pines) provides induction training and competency assessment for all staff as well as an annual refresher training day and a further competency assessment.
Xanthe has a small team of skilled, confident and competent staff who provide meticulous and consistent support with all aspect of Xanthes care and support.
Making it work in practice
To competently and confidently support Xanthe staff are trained to administer regular and emergency medicines; have a good knowledge of epilepsy and clear plans and protocols for seizure activity; first aid response; gastrostomy feeds and administration of medicine and oral suction so they can keep Xanthe safe and well during her short breaks. Only staff members that know Xanthe well can work overnight with her as experience and knowing all of the signs of Xanthe becoming unwell is vital to maintaining her wellbeing.
Due to Xanthe's health needs her staff have to work to strict protocols, Xanthe's breathing Apnoea can cause her to stop breathing and staff have to respond skilfully and quickly in this situation. Xanthe is often unwell during the winter and due to this has a 'well' and 'unwell' overnight protocol to follow.
Her unwell protocol requires Xanthe to be monitored in person every ten minutes throughout the night and for staff to listen to a sound monitor at all points so they can respond immediately if needed.
Making a difference
Xanthe overcomes a lot her complex needs in her day to day life and is able to enjoy her time at the Pines with help and personalised support from staff and her peers.
She enjoys her short breaks alongside young people she knows from school and absolutely loves the social side of her break. She loves the hustle and bustle of a busy residential short break home environment, especially dinner time where people catch up and socialise. She has a great sense of humour and is amused by the antics of her peers; and especially likes it if another young person does something wrong and they get asked to stop.
Xanthe loves a bit of drama. Despite her very pretty, girly image she is actually a bit of a tom boy at heart and although she likes being pampered by having her hair braided or feet and hands massaged she also likes to watch a good game of football with the boys and loves listening to the crowd cheering. Rugby will do as a backup if that is on. Xanthe also enjoys rock music and will often spend an hour in the sensory room with the lights going and the music blaring out, which causes endless smiles. Xanthe often laughs at things others may find sad or depressing such as the film Titanic or EastEnders! Xanthe has a great sense of humour!!!!!
Xanthe participates in the young people's meetings where young people can discuss and influence what is up and coming at the Pines. She listens to all the upcoming events so she knows what she has to look forward too including Halloween parties where she dressed up and trips out.
Xanthe has friends at the Pines and enjoys spending time with them in the arts and crafts rooms doing hand paintings or feeling the bristly brushes, Xanthe likes to go on trips with her friends and has been to Duxford, the zoo paradise Wildlife Park, bowling and trips to the park.
Looking to the future
Xanthe and her family are a big part of the Pines and the staff take pride in being able to support her with her complex needs whilst being able to see beyond these and support her to take part in everyday activities that should be and are a part of Xanthe's life.
She takes great enjoyment from her regular breaks at the Pines and it's great that staff and other young people concentrate on Xanthe enjoying herself and having fun and not just concentrate on her medical needs.
Two of the team from the Pines are also providing support to Xanthe in her own home for a few hours twice a week. Going forward the family are hoping to increase care and support at home.
"What makes it work for everyone are the relationships with Xanthe, her family and key professionals. The trust and the communication before, during and after a break are critical alongside all the skills and protocols the staff have to support them."
"Pretty much sums our girl up!! I guess to summarise what the Pines means to us is that Xanthe has very complex needs and the Pines manages to pull off the almost impossible task of meeting her health needs and care while also offering her fun and interesting experiences.
"It allows the rest of Xanthe's family to either have a break or enjoy social time with friends knowing that she is in safe, capable hands. Even a couple of breaks a month allows us to recharge our batteries so please don't underestimate how valuable you all are."