Analysis

Helping children with serious conditions return to their families

Eleven years ago, Linda Partridge joined the WellChild charity, with a mission to alter the care of children with complex health needs.

Eleven years ago, Linda Partridge joined the WellChild charity, with a mission to alter the care of children with complex health needs.

Noah McNeill, when he was aged one, with mum Jill and his former WellChild nurse Katie Booth

She has done just that. As director of programmes, Ms Partridge has overseen the creation of a network of WellChild nurses to help children with serious conditions leave hospital and return to their families.

800

children and young people were helped by WellChild nurses last year

‘There are children who have spent months, sometimes years in hospital with exceptional health needs. But it doesn’t need to be like that, and with the right help and support they can be discharged. When I joined WellChild, that was the goal.’

The charity started in 2006 with the appointment of four nurses, funding each post for three years before transferring responsibility to the NHS. It has worked incredibly well, with 31 WellChild nurses now working across the UK and a 32nd due to start in Northern Ireland in January. Only once has the NHS pulled the plug on funding.

Varied workforce

The support the nurses provided last year helped more than 800 children and young people leave hospital. The posts differ from place to place and are based in hospital and community settings. The focus of their work also varies. Some take a lead role in discharge planning, arranging and preventing frequent hospital readmissions, while others focus on specific aspects of care, such as ventilation or feeding, once children are back with their families.

Tina Partridge

‘Traditionally parents have just been left to get on with it and they have had to learn all sorts of complex procedures, from giving physiotherapy to operating highly technical equipment, such as ventilators, suction machines, nebulisers and feeding tubes,’ Ms Partridge says. ‘This all goes on behind closed doors – and it places immense strain on families. They need better support.’

The ongoing issue prompted Ms Partridge and her team to launch a social media campaign, using the hashtag #notanurse_but to get their story heard. It is another example of the work undertaken to support families and children. Another is the Helping Hands project, which sees volunteers work with families to transform homes and gardens to make them more suitable for the needs of the children.

Fighting for change

Now, a decade since the first WellChild nurses took up posts, Ms Partridge shows no signs of slowing down. She believes she has the best job in the world and says she would like to see a WellChild nurse in every part of the UK – meaning there would need to be at least 200.

32

WellChild nurses now being funded

‘Why not? We’ve just scratched the surface so far,’ she says. ‘There are lots of wonderful children and community nursing teams out there, but they’re under so much pressure. Their workloads are excessive, so what we try to do with these posts is to address the barriers that stop these children from being discharged.’

Ms Partridge’s motivation can be traced back to her childhood. As a teenager she helped to care for her younger sister Tina, pictured left, who has Rett syndrome, a rare neurological disorder.

No stopping

With a lack of help available, her parents had to fight for support. She says it was this that gave her the zeal to push for change later in life.

‘It was difficult,’ Ms Partridge says. ‘I grew up quickly because I had to. I learned to wash, cook and care for my sister. I was 12 when she was born and for the first few years she developed normally, but then it became clear something wasn’t right.

100,000

The number of children with serious illnesses and exceptional health needs in the UK

‘In those days there were no diagnoses for rare conditions. In fact it wasn’t until I was working in London as a nurse that we finally found out it was Rett syndrome. There was little support. We had contact with the GP and social workers, and the local Mencap group helped, but my parents had to fight for everything. There was no community nursing team coming in to to help and no respite care.

‘Tina was often very unwell, which only added to the strain. I guess that is what gave me the motivation to get into nursing and then to keep working for children and families. I’m very proud of what we have achieved, but we can never say enough is enough.’

The difference WellChild nurses make

Much of the first year of Noah McNeill’s life was spent in hospital, but without the support of WellChild nurses it could have been much longer. Noah, now five, was born with a rare lung condition, which meant he needed to have a tracheostomy as well as ventilation to help him breathe. When he was born, he was transferred from his family’s local hospital in Calderdale, West Yorkshire, to Liverpool’s Alder Hey hospital. He spent nine months there, the first seven of which were in intensive care.

Fortunately for the McNeills, there was a WellChild nurse in Liverpool and their home in Kirklees. It meant plans could be put in place to get Noah home as quickly as was possible. The WellChild nurses helped to arrange the discharge and support he needed, as well as providing his family with the help and training to care for him at home.

Noah’s mother Jill, who has taken part in a charity single for WellChild to mark the charity’s tenth anniversary, says she isn’t sure how they could have managed without the WellChild nurses. ‘They are worth their weight in gold,’ she says. ‘The support they give is unrivalled.’

Linda Partridge’s career timeline

Linda Partridge

  • Trained in children’s and adult nursing at Booth Hall Children’s Hospital in Manchester for four years, during the late 1970s.
  • First job was at Oxford’s John Radcliffe Hospital in the paediatric intensive care unit, before moving to the Royal Brompton in London.
  • After 15 years on the front line, she left to study at university, completing undergraduate and postgraduate degrees related to health education.
  • Then took a job at Contact a Family charity, where she worked to set up support networks for parents of seriously ill children. This involved lobbying and campaigning work across Europe during the late 1990s.
  • In the early 2000s she moved to a post running a team of nurse advisers working with patients who have neurofibromatosis, a genetic condition that causes tumours, before joining WellChild in 2005.

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