Thanks to masonic funding, more WellChild Nurses like Rachel Gregory can help young people with exceptional health needs move from hospitals back into their homes, as Steven Short learns
Yesterday I travelled to deepest Lincolnshire for a home visit,’ says Rachel Gregory. ‘One of my children is starting school in September, so we had a final sign-off meeting to ensure everything is in place, and everyone is able to properly support his needs. We thought he might have to go to a special school – but he’s going to a mainstream school; it’s amazing.’
Rachel is a WellChild Nurse and her Lincolnshire child is one of around 100 under her team’s care. There are some 100,000 children and young people in the UK living with serious illness or exceptional health needs. Many of them spend months or even years in hospital because there is no support enabling them to leave.
The WellChild Nurse programme was established in 2006 to provide specialist support that makes it possible for children to be cared for at home. There are currently 32 WellChild Nurses across the UK. Employed by the NHS and funded by WellChild, these paediatric nurses help children and their families with issues such as ventilator-assisted breathing, physical and learning disabilities, tube-feeding, seizure management and chronic debilitating pain.
Rachel, a WellChild Long Term Ventilation Nurse Specialist, is based at Nottingham Children’s Hospital. Her role is part-funded by the Masonic Charitable Foundation (MCF), which has just awarded the charity a grant of £110,000 to fund a similar post in Derbyshire. Rachel, like her fellow WellChild Nurses, not only supports children with complex medical needs and potentially life-limiting conditions, but also provides support to their families.
The grant is the latest in a relationship between the charity and the MCF that spans almost two decades. ‘WellChild is a well-respected organisation, and there is clearly a demand for its services,’ says Les Hutchinson, Chief Operating Officer at the MCF.
Every year, the MCF gives more than £5 million to charities across England and Wales. Its latest grant to WellChild Nurses brings the total figure awarded to the charity to £240,000. ‘This is one of our larger grants, built on a relationship of trust and understanding, and seeing the impact of their work over a number of years,’ Les explains.
‘We wanted to fund provision in Derbyshire as there is a clear need. WellChild has already identified 90 children in the area in urgent need of support,’ he says. ‘Not only does this care-at-home model constitute a tremendous saving for the NHS, it also means that children are able to experience life as a child, to do things they would miss out on if they were in hospital – like going to school, sleeping in their own bedroom, going on family outings.’
Rachel, like the other WellChild Nurses, responds to the needs of individual children and their families. She will be involved in planning and coordinating a child’s transition from hospital to home – it’s estimated that 12 per cent of children in paediatric intensive care beds could be looked after at home were there enough support for them. She will ensure that necessary equipment, care and support are in place for the child and their family. Rachel is also able to provide practical respiratory nursing care at home.
Besides dealing with these practical issues, her job has an emotional element to it too: ‘My role can be very supportive. Some of the children’s medical needs are complex, and caring for them at home can be stressful for parents. Families are often under a considerable amount of pressure.’
While no two working days are the same, for Rachel, they always begin by checking her work phone for texts and emails. ‘I always have a look first thing to see if anything has occurred overnight,’ she says.
After seeing her own two children off to school, Rachel grabs breakfast on the run and usually arrives at work by 8.30am. ‘Some days I might be office-based, doing paperwork, writing reports and making phone calls,’ she says. ‘I might have a child coming in for review, and some days we have a multidisciplinary outpatient clinic, headed up by our consultant, during which we will see existing patients and meet newly diagnosed children and look at their needs and support.’
Those outpatient appointments number some 10,000 a year, according to Jo Watson, lead nurse for Derby Children’s Hospital, where the new WellChild Nurse will be based. ‘We manage inpatient and outpatient services here, as well as the children’s emergency department,’ says Jo. ‘Many children with complex needs don’t have a formal diagnosis and because of the way the NHS is currently funded, there is no defined care pathway for them… there are gaps in service.’
‘Not only does this care-at-home model constitute a saving for the NHS, it also means children are able to experience life as a child…’ Les Hutchinson
The funding of the WellChild Nurse will, says Jo, ‘allow us to provide better coordinated care for those children with numerous illnesses who need attention from different hospitals and healthcare professionals.’ Jo hopes that, as well as coordinating this care, the new WellChild Nurse will network with their peers to bring best practice back to Derbyshire. ‘The grant is about enhancing the quality of care we offer. It’s a leadership role.’
Along with being a bridge between families and the hospital and community teams, Rachel provides training for anyone who may need to help with a child’s care – from family members to school teachers to Brownie leaders. She also organises and conducts sleep studies in the child’s home overnight.
‘Breathing difficulties often happen at night, so we do sleep studies to make sure oxygen and carbon dioxide levels are where we want them to be,’ says Rachel. ‘We make sure ventilators are working, and if anything is wrong we make necessary changes, perhaps trying new forms of ventilation or new regimes. All of this can now be done at home, rather than necessitating a hospital stay.’
If no such study demands her attention, Rachel heads home. ‘Then it’s time for teenage homework – I change my hat as I walk through the door and turn back into a mum.’
Find out more at: www.wellchild.org.uk
Support for Sophie
One of the children supported by WellChild Nurse Rachel Gregory is 11-year-old Sophie. She and her twin sister Erica were born at 24 weeks and have cerebral palsy. Sophie’s condition is more severe than her sister’s and she has a number of conditions including epilepsy, chronic lung disease and scoliosis, which requires 24/7 care. Sophie is ventilated at home and her family attends to her many medical needs.
‘Rachel has been instrumental in keeping Sophie at home,’ says Leanne Cooper, mum to the twins and nine-year-old Kyla. ‘She is a constant support and the link between us and many of the healthcare professionals we deal with. She makes sure everything runs smoothly for Sophie, ensuring she is at the centre of all decision-making so she can live a full life.’
Leanne is a member of the parental advisory group that works with WellChild to help shape its strategy. She is also one of the parents who started the ‘#notanurse_but’ campaign, which aims to raise awareness of the level of medical care parents provide for their children at home.
‘Years ago, many of the children we work with would not have survived their conditions,’ says Rachel. ‘In the past 10 years, things have really changed and long-term ventilation at home is much more viable. Technology and medical decision-making have really advanced, meaning our children can now live full and fulfilling lives at home.’