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Charity helps children’s transition to adult services

Specialist nurses funded by the Roald Dahl’s Marvellous Children’s Charity are helping to care for children with long-term conditions and smooth their transition to adult services

Specialist nurses funded by the Roald Dahl’s Marvellous Children’s Charity are helping to care for children with long-term conditions and smooth their transition to adult services

  • Charity aims to improve quality of care young people receive up to and during transition
  • Nurses are an important link between the two services
  • Research is being undertaken to determine the value of specialist nurses
Picture shows specialist transition nurse Giselle Padmore-Payne with patient Benjamin Tshibangu in a BBC London interview
Specialist transition nurse Giselle Padmore-Payne with patient Benjamin Tshibangu
in a BBC London interview

The fact that aspiring actor Benjamin Tshibangu, 23, is beginning to work in his dream job shows how far he has come with the help of a specialist transition nurse, having been diagnosed with sickle cell disease shortly after birth.

Mr Tshibangu says a major factor in him having the confidence to follow his dream despite his health difficulties is the support he received from Roald Dahl specialist transition nurse Giselle Padmore-Payne, who smoothed the path for him as he moved from children’s to adult services.

Study to assess nurses’ value

Roald Dahl’s Marvellous Children’s Charity is embarking on a research study into the value added by its specialist children’s nurses.

The charity is conducting an independent study assessing the impact of the specialist children’s nurse role and monitoring outcomes in the belief that the role is often underestimated.

Led by Sheffield Hallam University, the project will use a mixed-methods approach to review the social and demographic profile of nurses’ caseload. The project is scheduled to be completed next year.

‘Giselle helped me commit to the career plan of being an actor,’ he says after being called away while being interviewed for this article to look at promotional material for a student film that is about to have its premiere at a London cinema.

‘My health was very unpredictable’ 

‘For a long time my health was very unpredictable. I was worried that I would never be able to do anything that wasn’t a standard nine to five more secure job.

‘Having a transition nurse is invaluable. You feel safe, you feel comfortable, you understand what you have to deal with having a chronic condition and moving on to adult services. You feel like you have a friend that you can talk to who also knows a lot about your health condition, as opposed to your consultant. Consultants are nice too, but they are much more formal about it, it’s a much more sterile feeling.’

He has worked with Ms Padmore-Payne since he was about 13 and says: ‘I only contact Giselle when there’s something that’s critical. But when I do talk to her she’s always available and I’ve got confidence about being able to talk to her about anything. She’s always there and there’s that rapport, I can talk to her about anything.’

‘You feel like you have a friend that you can talk to who also knows a lot about your health condition’

Benjamin Tshibangu, patient of a specialist transition nurse

He praises the level of skill that transition nurses have in being able to build trusting relationships with ‘angsty young people with chronic conditions’.

Specialist transition nurse Giselle Padmore-Payne
Giselle Padmore-Payne

Ms Padmore-Payne is one of more than 75 specialist nurses in the UK funded by Roald Dahl’s Marvellous Children’s Charity, helping to care for thousands of seriously ill children in the UK.

This summer the charity announced that it would fund three specialist transition nurses in east London, Leeds Teaching Hospitals, and Lewisham and Greenwich NHS trusts.

Specialist transition nurses aim to dramatically improve the quality of care that young people receive up to and during transition.

Roald Dahl nurses support children and families affected by conditions such as epilepsy, acquired brain injury, rare diseases, sickle cell and thalassaemia.

Ms Padmore-Payne, who is based at King’s College Hospital NHS Foundation Trust in London, explains: ‘Transition is very important to ensure that young adults have a successful transit from paediatric services to adult services. Over the years we’ve found this role has been underfunded and undervalued.’

‘The role is essential to giving the young adult the empowerment, education and equipment they need to navigate the complex NHS system’

Giselle Padmore-Payne, Roald Dahl specialist transition nurse

‘The role is essential to giving the young adult the empowerment, education and equipment they need to navigate the complex NHS system. It involves not just educating the young adults but also the parents, as well as any staff nurses, doctors and allied healthcare professionals.’

She cites examples of what can go wrong when transition does not proceed smoothly.

A boy aged 17 who came to the emergency department was given pain relief and sent to the adult unit, only to be sent back to the ED because he had not been fully transitioned to adult services. He was sent back and forth between the units four times.

Electronic individual care plans have been introduced

‘I got a hysterical call from his mother via switchboard while I was on holiday saying no one knew where to put him and they didn’t know what to do. He was just going back and forth while having a severe painful episode after coming in during a sickle cell crisis.’

A girl aged 16 was admitted to an adult ward. ‘On her first night on an adult ward she was next to an elderly woman who was gasping for air all night. The woman died, and the young adult stayed up all night in pain and crying, petrified that if she fell asleep she might die as well.

‘The next time she became ill she stayed at home, the parents couldn’t convince her to come. By the time she came into ED she needed resuscitation because she’d stayed at home so long with her illness, her pain was getting worse at home. She came into the ED and required resuscitation because of her bad experience.’

To prevent such incidents in future electronic individual care plans have been introduced at King’s so that once a patient presents at the ED their name is input on the database and a care plan comes up for that patient.

Transition clinics are also held at King’s with adult nurses, so if Ms Padmore-Payne is away there is a familiar face for the young person and link nurses on the ward.

Logo of Roald Dahl’s Marvellous Children’s Charity

‘I just had the confidence he would be fine’

Virginia Tshibangu first encountered Giselle Padmore-Payne when her son Benjamin was diagnosed just after birth with sickle cell disease.

Last month she started working alongside Ms Padmore-Payne as a transition nurse at King’s assisting young adults aged 13 to 24.

Inspired by the nurses

She says: ‘To be honest, if Benjamin had not been born with sickle cell disease I would not be in healthcare. I was a housing professional before he was born.’

She was inspired by the example of the nurses who cared for her son. ‘There was a point where he was in intensive care and we thought he was going to die. I think of how well they cared for him.

‘They enabled me to continue working. I could go and have a rest at night. They’d say, “go home, don’t come back in, he’ll be fine”. I just had the confidence that he would be fine.’


Anne Horner is a freelance writer

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Roald Dahl’s Marvellous Children’s Charity

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