Caring for children with complex needs

Caring for a child with complex needs can be a full-time job for parents. "I'm not a nurse but I provide a really high level of care to my daughter Hannah," says one mother, who features in a campaign video for the charity WellChild. "She needs 24-hour care, and every day the care she's given is equivalent to a high dependency unit in a hospital." Her words echo the experiences of parents of more than 100,000 children and young people across the UK living at home with serious illness.

Over the past 20 years, research has demonstrated sick children are better off at home than in hospital. The Department of Health's National Service Framework for Children 2003 states hospital is "disruptive to the child and family and to the care of other children" as well as being costly for families in terms of travel, parking, meals at the hospital, time off work, and extra childcare for siblings. Discharging patients who no longer need to be in hospital is also better for health services, saving them money and freeing up beds.

But a child's journey home from hospital is complicated. It involves a myriad of professionals, including those from health and social care services, housing and education, and delays are common.

In 2006, WellChild set up a network of specialist children's nurses in a bid to address these issues. The nurses aim to reduce delays in discharging sick children, decrease re-admissions to hospital, and provide families with training and home visits. They act as a single point of contact for families in a geographical area, and co-ordinate multi-disciplinary professionals in a "team around the child" model.

Today, there are 32 such nurses across the UK. The charity funds each for the first three years, on the agreement that the local NHS trust that employs the nurse continues to finance the role. All WellChild nurse posts created to date have been continued bar one - due to organisational changes at the trust in question. Over the years, the nurses have developed their posts in line with local need so no two roles are the same. Yet they share best practice through their network, meaning lessons learned at a bedside in Nottinghamshire, for example, could benefit a child in Cardiff.

An evaluation published in 2016 showed WellChild nurses reduced discharge times and re-admissions. This provides a cost saving to the NHS. The nurses also helped reduce families' stress and created a sense of normality in their lives. They achieved this by co-ordinating services and preventing families having to frequently repeat their story to different professionals. Family members also reported feeling empowered by the training and support.

While there is no doubt the nurses make a difference, WellChild director of programmes Linda Partridge says they face challenges. Nationwide shortages of nurses are hitting children's palliative care services and community nursing teams. At the same time demand is rising. Medical and technological advances mean premature babies and children with certain conditions survive longer.

Partridge says the process for gaining funding from local clinical commissioning groups (CCGs) for a child's package of care can be cumbersome. "There are issues if you have more than one CCG involved - who will pay for what?" she says. "For a CCG, the care needed for a child being ventilated can seem very expensive. It's not compared with keeping them in hospital. But when they've got to spread funding across the whole community you can see why they want to make it as cost-effective as they can."

Housing can cause acute delays, particularly where stocks are low. A child may also need adaptations at their home, which take time. WellChild nurses with a discharge role can help make housing applications for parents.

Families may be supported by local authority-employed carers, with 24/7 nursing care generally only available for children nearing the end of their lives. This can be expensive for councils, especially if they are struggling to recruit and retain their own care staff and have to deploy costly agency workers. As well as training parents, WellChild nurses co-ordinate and train carers.

In the future, Partridge wants to see more WellChild nursing posts established - but as a charity, the organisation must fundraise an average of £165,000 per three-year post, which includes the nurse's salary, travel expenses and training budget. Potential funders often question why a charity should be funding children's nurses, says Partridge. However, she says there are advantages in involving the voluntary sector not least the freedom to innovate. "We can give a health trust an opportunity to try new things," she says.

WellChild is currently looking at ways its nurses can help support families requiring 24/7 care. But before round-the-clock care can be improved, wider children's nursing shortages need to be addressed, says Partridge. She says commissioners need a better understanding of the needs of families. "We're talking about parents that are acting as an untrained workforce," she says. "The support they're asking for is absolutely crucial. Commissioners may only have a handful of children in their areas trying to access this funding, but it doesn't make their needs any less."

Name: Rachel Gregory
Job Title: WellChild long-term ventilation nurse specialist
Employer: Nottingham Children's Hospital

Rachel Gregory specialises in supporting children and families at home after discharge, by providing ventilation training and support. She currently cares for 90 children. Her geographical reach is the largest of all WellChild nurses, covering Nottinghamshire, Lincolnshire and Derbyshire. One of her key goals is to prevent re-admission to hospital. "If I get a call or a text from a parent, I ring them and decide if I have to go and see them," she says. "If they have to come in, I can plan for the team to receive them so they don't have to wait in A&E."

The children Gregory cares for could either be on permanent ventilation through a tracheostomy, or night-time support via a mask. She begins training before a family leaves hospital. It can take toddlers weeks to get used to wearing a mask.

Gregory also weans children off ventilation if their condition improves, something previously done in hospitals. One child she worked with had been on a ventilator since birth and left hospital aged six months. Gregory spent two years visiting him regularly to slowly reduce his ventilator dependency. "He never came to hospital for any of it," she says.

As part of her role, Gregory has also set up an equipment library which means children can access support immediately, rather than waiting for a CCG to approve funding. "Any delays have now totally gone," she says.

She admits the level of demand for her services is challenging as is the distance she covers. As a result, she has to signpost families to other services and is planning to set up satellite clinics in local hospitals to enable several children to be reviewed at the same time.

Prior to this job, Gregory worked in intensive care and says she has had to adapt her approach to provide what is best for families. One example is organising for children with tracheostomies to go swimming. "As an intensive care nurse I would have said it was too unsafe," she says. "But as a family activity it's so beneficial."

Name: Rhian Greenslade
Job title: WellChild complex discharge liaison nurse
Employer: Cardiff and Vale University Health Board

A former special school nurse, Rhian Greenslade supports children and families across south and mid Wales from her base at the Children's Hospital for Wales. Her main roles since coming in to post in 2009 are discharge planning and acting as a link back to the hospital over the phone after children are discharged to the care of community nursing teams. She deals with up to 300 cases a year.

Greenslade visits children she is supporting on wards throughout the hospital every day. They could have any sort of complex health need, including Down's syndrome or head injuries. Greenslade sets up meetings with all relevant health professionals, such as dieticians and a visual impairment team, to plan for discharge.

Getting care packages in place is a lengthy process, because purchasing equipment can take time, as well as finding suitable housing. Last year, she discharged a three-year-old boy back home who would have been medically fit to leave hospital six months earlier had suitable housing been available. He was admitted to hospital aged two after a serious burn left him in a wheelchair with significant neurodisabilities.

"While he was here I kept the planning meetings going to make sure the equipment he needed was in place when he was able to go," says Greenslade. "I had to do a huge amount of follow-up with housing and keep in contact with children's services. It wasn't in his best interests to stay on the wards. It was affecting his social and developmental skills."

Greenslade organised care training for the child's parents, and registered him with a local early years forum so he could attend nursery. "If I wasn't here, it would be the parents trying to do that - and it's a minefield," she says.

Greenslade is currently the only WellChild nurse in Cardiff, but the charity is considering supporting a second role to provide training on suction, gastrostomy or feeding via the stomach, tracheostomy and ventilation.

Name: Aileen Crichton
Job Title: WellChild children and young people's liaison nurse
Employer: Crosshouse Hospital, NHS Ayrshire & Arran

Aileen Crichton became a WellChild nurse in 2010 after four years working as a children's community nurse. Based in a paediatric ward, she looks after 53 children alongside a staff nurse and two advanced nurse practitioners. She accepts referrals from all health services within her area, from families directly, and attends a paediatric unit inpatient meeting several times a week to find out if she can help any children on the ward.

As soon as Crichton meets a child, she begins planning their discharge. "Saying ‘I'm here to help you get home' gives parents that boost," she says. This involves arranging meetings between all the professionals caring for the child, including social services, education and health visiting teams. She plans training for parents and carers, and orders equipment the child will need at home.

Crichton delivers training such as how to change a tracheostomy tube or catheter, administering tube feeding via a nose or stomach, or giving injections. She continues to support families with practical and emotional help through home visits that can be daily, weekly, or as regular as needed.

One of the challenges Crichton faces is caring for children who live on nearby islands. She believes all children should receive the same level of care, and will spend a whole day visiting one child in such a location if necessary.

Since coming into post, Crichton has passed an advanced nurse practitioner course funded by WellChild, meaning she can now examine, diagnose and treat children at home, helping lift pressure on local NHS services.

Unlike other WellChild nurses, she provides 24/7 care for children needing palliative or end of life care. This has helped reduce re-admissions to hospital. Recently she prevented 49 hospital admissions over eight months for a three-year-old girl before she died. "Caring for those families has proved to be value for money," she says.

Crichton stays in touch with families years after their child has died. "If you're in hospital and a child dies on the ward, the family walks out and that's usually the last you ever see them," she says.

"It's very important visits don't stop when the child is no longer there."

Name: Esther Bennington
Job title: WellChild parent trainer nurse
Employer: Edge Hill University and Alder Hey Children's Hospital

Esther Bennington's training role, established in 2006, was a first for WellChild. She trains parents to care for their sick child rather than co-ordinating care or discharge. She delivers training in hospitals, homes, in the community, in schools, and at a specialist training facility called the Better at Home Suite.

This is a series of rooms designed by WellChild to look like a child's home. Here Bennington helps parents gain confidence before discharge. Using dolls, she recreates scenarios they may face at home.

Recently, she trained a couple planning to take their six-year-old son home a week later. "He had a tracheostomy, so we went through a scenario of what to do if the tube was blocked," says Bennington. "At the start the dad was very unsure. By the end he said how much more he'd got out of it than he thought he would."

Bennington's caseload is variable. She might meet a family only once or twice or train them for six months. Since August last year she has trained 84 parents and carers. She says her presence can cut weeks off a child's discharge time by reducing delays in providing training.

She also trains families at home and works closely with other services. For example, she recently taught the mother of an 11-year-old and two aunts how to use a ventilation machine alongside a physiotherapist who showed them exercises the child could do.

Bennington has recently begun delivering group training sessions for parents with children who attend a special needs school. These have included refresher sessions on medication, epilepsy, practical suction techniques and basic life support. Other schools have since got in touch to request similar sessions.

"One parent who has been caring for her daughter for 15 years said she learned new skills and gained confidence through the training," says Bennington.