Access provided by
London Metropolitan University
WellChild Nurses help thousands of families get children with serious and complex needs home from hospital
More than 100,000 children and young people are estimated to be living with serious and complex health needs across the UK. Many spend months or even years in hospital because there is no support for them to leave.
Nursing Children and Young People. 35, 2, 16-17. doi: 10.7748/ncyp.35.2.16.s8
Published: 02 March 2023
WellChild is a national UK children’s charity which makes it possible for these children to be cared for at home, where possible, instead of in hospital. WellChild Nurses provide the best care for these children, particularly on the long and difficult journey from hospital to home.
What do WellChild Nurses do?
They provide a seamless, coordinated and high-quality model of care in hospitals and the community, typically helping more than 2,700 families a year.
The role of WellChild Nurses varies as it is developed locally to provide support for those children and young people most in need in their area. There are WellChild Nurses who care for those requiring long-term ventilation support, discharge coordinators to get children with the most complex needs home from hospital, and specialist nurses who help young people transition from child to adult services.
There are also dedicated parent trainers to help parents learn the skills they need to care for their child safely at home.
There are ten WellChild Better at Home training suites in England, Scotland and Wales. The suites provide home-from-home spaces where parents and carers can learn the often life-saving interventions needed by their child in a safe environment, with state-of-the-art simulation equipment.
They also provide the opportunity to train members of the extended family to widen the support network. Set up like a child’s bedroom, the training suites provide a safe space to prepare for providing care in the home. Some WellChild Nurses are palliative care specialists to support families at the hardest of times.
WellChild director of programmes Amy Mitchell says: ‘We care for a wide variety of children who are generally described as complex. We do not cover a specific diagnosis, but often the children will have two or three different diagnoses or conditions. We are for the kids and the families who are really struggling.’
How many WellChild Nurses are there?
There are 50 WellChild Nurses working across the UK. The first post was established in Birmingham in 2006.
The demand for their services is increasing. ‘The population of children with complex needs is growing,’ says Ms Mitchell. ‘Children are surviving who wouldn’t have maybe only a few years ago, and teenagers are reaching adult services who wouldn’t have made it to that point before. We need the right professionals to support these different needs.’
What settings do WellChild Nurses work in?
WellChild Nurses work in tertiary and community settings, depending on the role that has been developed locally. Many of them are focused on getting the right support in place for a child to go home and stay there.
Surveys carried out by the charity have highlighted the detrimental impact that having a child in long-term hospital care can have on the whole family, affecting relationships, finances, careers and mental health.
What band is a WellChild Nurse, and what skills and qualifications do they need?
WellChild nurses are always advertised at band 7 on the Agenda for Change pay scale. As it is band 7, those who apply for a WellChild Nursing post tend to be fairly senior nurses, Ms Mitchell says.
The exact experience a successful candidate has will vary, but will need to support the specifications of that job. The nurses need good project management skills alongside excellent clinical experience, she says.
An induction and any extra training needed is provided by the charity to support a new nurse in their role, and they also have access to the WellChild Nursing network for peer support, Ms Mitchell says.
Who are WellChild Nurses employed by?
They are employed directly by the NHS hospital or community trust they work in. The role is developed with the charity, which funds it for the first two or three years, before the trust takes over. The role retains its WellChild title.
How can I become a WellChild Nurse?
All WellChild Nurse vacancies are advertised on the NHS Jobs site and the charity recommends checking this regularly. Recruitment is managed by the local NHS trust advertising the role.
Ms Mitchell encourages nurses to consider such a role. ‘WellChild Nurses are a wonderful and inspiring group of professionals who care for some of the most vulnerable children with complex health needs across the country, giving them the best quality care and support in their often difficult journey home from hospital to be with their families,’ she says.
‘Once the children get home, WellChild Nurses are passionate about ensuring best care continues, so they can thrive at home. They always put the child and the family first in everything they do.’
Rachel Shanahan (pictured) is WellChild sister for the children with medical complexities discharge team, which allows the most seriously unwell children to leave hospital and return home.
She stresses there is no typical patient for her team, which includes input from two consultants, a discharge coordinator and a family support officer. They support patients ranging from newborn babies to teenagers, and care for those with a wide range of health needs that can have been caused by an accident, disease or genetic condition.
The criteria for patients referred to them is that they are under the care of two or more specialties and have a condition that will last at least 12 months. Typically, there are about 25 patients on the team’s caseload, although this can fluctuate, with referrals for support from the service increasing year on year. The children will generally have been in hospital for weeks or months, sometimes even years, by the time they go home.
Ms Shanahan has mainly worked in acute medicine since qualifying as a children’s nurse almost two decades ago. Her work in an early ‘hospital at home’ service and then as a discharge coordinator for children with complex needs meant that she was well-placed with the skills needed in her current role when it was started in 2015.
Her job is mainly behind the scenes, accessing support and overcoming barriers to get a child home, and dealing with problems that have been escalated to her.?‘Discharge is often a long process, and it involves a lot of negotiation with different services,’ she says.
‘When you talk to families they often struggle to find the words for how important it is to get their child home, to be able to live a normal family life in their own environment.
‘We want to plan discharge so that children can get and remain home. For many families getting their children home is just the start of a journey.’
Ms Shanahan will often work closely with social care and health services to get the right care package in place for the child, and with housing,?community services and charities to either have a family’s home adapted or enable them to be moved into a new home which is suitable for their child and any equipment they need.
‘When the child comes home, families often get in touch to say they have managed things that other people may take for granted, but it is incredibly precious to them,’ she says. ‘Sometimes it’s a mother who has been to a coffee shop to meet friends with her baby with complex needs, or the family have been to the seaside or a children’s party.
‘One of our families sent us photos of their daughter when she went to school. She couldn’t go for long, but I don’t think there was anyone in the team who didn’t cry when we saw her in her uniform.’
The ability to network is crucial in her job, and forging relationships with helpful people in other services is essential to making complex discharges happen. ‘An ability to openly communicate with people is important. I like to learn, grow and develop by meeting new people, and this kind of role involves being innovative and thinking outside the box.’
She says the job means being humble and realising that ‘in most instances we can’t understand what people are going through’.
Being open-minded is also critical, she says. Some of the families have complex situations going on, which can include homelessness, and these need to be understood to arrange and support a successful discharge.
‘For our families, getting home is one more step towards normality,’ she says. ‘When you have a child with complex needs it is a ticking time bomb. Every day counts and is special, as it may be their last with their child.’
WellChild Nurses. www.wellchild.org.uk