A pioneering paediatric nursing programme celebrated its 10th birthday earlier this year. Jo Stephenson spoke to some of the nurses involved in the charity-run scheme that has helped transform care for many sick children since its inception.
In the past children with complex health needs would often languish in hospital for months, despite mounting evidence they fared better at home.
“Children with long-term ventilation needs, for example, would sit on a high dependency unit, because the concern was if you put them on the ward, there weren’t the skills to look after them,” says Linda Partridge, head of programmes at the charity WellChild.
“When I worked on paediatric intensive care, I always wanted this one person who could come in and help organise that journey home,” she says. “We needed somebody to bring everyone together.”
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The WellChild Children’s Nurse programme – which celebrated its 10th anniversary in April this year – was set up to do just that by co-ordinating care and support for families in hospital and the community to ensure a smooth transition home.
When the programme launched, the charity was best known as a funder of research, so the first challenge was to convince NHS trusts of the benefits of a new approach involving creating nurse roles specially for children with complex needs.
“I had to go out and convince people it could be done,” says Ms Partridge. “If you can set this person up, we will give you three years’ funding and I can guarantee at the end of three years you will have a post that you will not want to replace.”
“It’s not just the children’s needs and the technology that has got more complicated”
Tara Kerr Elliott
Her prediction is borne out by the fact that all but one of the 30 or so WellChild nursing posts created to date have continued to exist, and gone from strength to strength.
Where once WellChild approached NHS organisations to take part, there is now an application process.
The three newest WellChild roles created include the charity’s first one in Northern Ireland, a community respiratory nurse specialist based at the Royal Belfast Hospital for Sick Children.
There is a pressing need for more specialist nurses to care for this vulnerable group, as children’s and families’ needs are getting more complex due to advances in medicine and technology.
“The needs are greater because the complexities are greater and children are more technology-dependent,” says Rhian Greenslade, WellChild complex discharge liaison nurse at the Children’s Hospital, Cardiff. “Families expectations are also higher in terms of what support they need when they go home.”
“The difference you see in a child once they go home, compared to being in hospital, can be immense”
Helping families care for children safely at home is vital to ensuring they develop and reach their potential or – if children are nearing the end of life – spend that precious time with loved ones in familiar surroundings.
“The difference you see in a child once they go home, compared to being in hospital, can be immense,” says Ms Greenslade.
“They can be walking, vocalising and their social skills come on,” she says. “They start attending nursery and school and you get the family unit back together, and you see a family happier in themselves.”
The difficulties families face are not limited to caring for a sick child and WellChild nurses are often called on to help with issues outside the traditional remit of a nurse.
“It’s not just the children’s needs and the technology that has got more complicated, it also seems the number of additional problems families come with have increased,” says Tara Kerr Elliott, a WellChild nurse at Great Ormond Street Hospital.
“So, it is rare that you work with a family that doesn’t have any additional needs – you become an expert in housing, immigration, domestic violence, safeguarding and so on,” she tells Nursing Times.
“I had to go out and convince people it could be done”
WellChild has so far steered clear of creating a set role for its children’s nurses. Instead, the posts are tailored to the needs of local families and nurses have a variety of job titles and responsibilities. They may be hospital or community-based, but all effectively span both and involve liaising with hospital and community colleagues to support families effectively.
The charity has just funded its first full-time parent educator post in Merseyside to train parents on healthcare tasks they need to undertake to safely care for their child at home – an area where support nationally is patchy and often confusing.
The post, which will be based at Alder Hey Children’s Hospital in Liverpool, will involve working with families at home and at the WellChild training suite at Edge Hill University – the first simulated learning facility for families of children with complex health needs.
The charity has also created a dedicated specialist feeding post at the Cardiothoracic Centre at the Freeman Hospital in Newcastle, while other jobs include specialist long-term ventilation and non-invasive ventilation roles at Alder Hey and Southampton General Hospital, respectively.
Another innovative role at Hywel Dda University Health Board in Wales was created specifically to help children with complex needs make the transition from children’s to adult services and is based at Carmarthen Hospital.
The model has been evaluated with an audit of the first four WellChild posts in 2007 and the first formal evaluation by Bernie Carter professor of children’s nursing at the University of Central Lancashire, published in June 2010.
“One thing we get challenged on is why a charity is funding these posts”
This found WellChild nurses were seen as form of “organisational glue” in terms of bringing together different agencies and professionals and had “successfully impacted on the care of children and their families in relation to timely discharge, co-ordinated care and increased inter-professional working across health, social care and education”.
Most recently a new evaluation of the WellChild model – which was published in June – looked at the difference WellChild nurses make from parents’ perspectives.
Families reported WellChild children’s nurses helped reduce stress and create a sense of normality and they valued having a single point of contact to turn to with any concerns.
“It was having a person who had gone along that journey with them, was a standard presence in their family’s life and someone they felt comfortable with – so it was key-working at its best,” says Ms Partridge.
“Families also felt they were going back in less – they weren’t going to A&E anywhere near as much as they did, and were more confident about being at home,” she adds.
The evaluation includes a cost-benefit analysis. Yet without having seen the results – our interview took place before it was published – there is no doubt in WellChild nurses’ minds their work save huge amounts of money for the NHS by reducing hospital bed days and emergency admissions.
Aileen Crichton, from the WellChild Better at Home team in Ayrshire, recalls one child who was in hospital for up to nine months before the team existed.
“I worked with a child recently who had pretty much exactly the same needs, but they were only in hospital for 10 days,” she says. “That is concrete evidence of saving money.”
WellChild wants to ensure families across the UK have access to a WellChild children’s nurse and will then look at areas that may need more than one.
“You are not just out there on your own, because it can be quite challenging”
The next phase is likely to involve looking at creating WellChild “teams around the child”. Again the make-up of such teams would be different in each area. However, they could include a community nursery nurse, some paid carers, a band 5 or 6 nursing post, and could potentially involve funding a psychologist or social worker, or even a joint nurse-social worker role.
One huge advantage of the scheme is the support WellChild nurses are able to offer each other, say the nurses themselves.
“We’re learning as a group,” says Tracy Brooks, WellChild nurse and trainee advanced paediatric nurse practitioner in long-term ventilation working in Manchester. “You are not just out there on your own, because it can be quite challenging and lonely when you are coming up with new things or coming up against new things.”
“It’s a really good support network,” adds Jo-Anne Helliwell, team and clinical lead for children’s community nurses in South Cumbria. “So if you come up against something you can send an email and a flurry of information comes back. By the time everybody has replied you have definitely got a plan and an idea of where you can take that child’s care.”
She says being part of the group has also made her more ambitious personally and when it comes to service reform. “It’s made me realise I can achieve a lot and you are more ambitious for your families as well,” she says.
“There are other nurses out there who would love to implement new ways of working and new ideas”
The fact WellChild is a charity means it can work more flexibly and innovate, says Ms Patridge who admits she gets irritated when people ask her why the NHS is not funding posts.
“One thing we get challenged on is why a charity is funding these posts, yet nobody would ever question a Macmillan or Marie Curie nurse,” she says. “I think the charity sector and the NHS working together is of enormous benefit to families, because we are not only able to invest but also able to give trusts the opportunity to try something new.”
There are, however, challenges including navigating new commissioning structures and wide variation in the support packages and services on offer between different trusts and parts of the UK.
One issue is a reduction in children’s community nursing teams, which can delay discharge from hospital, and there are concerns about an overall lack of children’s nurses, especially those able and willing to work autonomously in people’s homes.
“We’re seeing that through recruitment, so when we come to recruit a new WellChild nurse the number of people applying with the skills we need have vastly reduced, because we don’t have the skilled workforce coming through that we used to have,” says Ms Partridge, who cites a lack of training opportunities.
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However, she adds that people who do become children’s nurses are generally highly committed and keen to do everything they can to improve care.
“I’m really proud of the fact that in the NHS we have a whole raft of children’s nurses who are full of ideas to improve care,” says Ms Partridge.
“It is not just the WellChild nurses,” she says. “Given the chance, there are other nurses out there who would love to implement new ways of working and new ideas.
“We have this fantastic commitment to the care of children and young people in children’s nursing, yet what we’re able to do is strip away that bureaucracy and say ‘let’s have a go’,” she says.
The rewards are many. “I think I have the best job in the world,” concludes Ms Partridge. “I can’t think of a day I haven’t thought what we’ve done has really made a difference.”