Posted 06 October 2020 - 11:00
Posted 06 October 2020 - 11:00
Features
How a dedicated nurse helped bridge the gap between children’s and adult services
A transition specialist nurse’s programme has helped young people with sickle cell and thalassaemia blood disorders as well as their families and carers
A Roald Dahl transition specialist nurse’s programme has helped young people with sickle cell and thalassaemia blood disorders as well as their families and carers
- Transition pathway helps young people with sickle cell and thalassaemia blood disorders move to adult healthcare services
- The pathway is co-produced with young people and has been shared with diabetes, cardiology and other medical teams
- Roald Dahl transition specialist nurse Giselle Padmore-Payne has won the Child Health category of the 2020 RCNi Nurse Awards for her work
A Roald Dahl transition specialist nurse has developed a programme for young people with sickle cell and thalassaemia blood disorders to move to adult healthcare services.
King’s College Hospital NHS Foundation Trust Roald Dahl transition specialist nurse – sickle cell and thalassaemia Giselle Padmore-Payne says helping young adults with a chronic illness to have as close to a ‘normal’ life as possible is at the heart of what she does.
Her transition programme has helped bridge the gap between children’s and adult healthcare services, and has won the Child Health category of the 2020 RCNi Nurse Awards.
Before tailoring the Ready Steady Go: Transition Programme, developed by Southampton Children’s Hospital, for her own trust, Ms Padmore-Payne undertook research with the young people in her service in London.
Practical and emotional support for young adults fearful of transitioning to adult services
The research revealed young adults were fearful of transition and the unknown.
‘My response has been to reassure them by providing practical tools, emotional support and making sure we have services tailored and geared towards the teenagers. It is so important to get their first experience in adult services right,’ Ms Padmore-Payne explains.
When young people are placed on adult wards next to people with drug dependencies or dying patients, it puts them off coming in to hospital, she explains. ‘The next time we see them is in A&E resus because they waited too long.’
She says she might rearrange schedules so transitioning young people can be admitted to a designated haematology ward with a designated link nurse, staff they know, or ensure a parent can stay for the first admission.
Until fully transitioned, they are admitted to the children’s ward.
RCN-accredited sickle cell and thalassaemia study days
Young adults want advocacy, Ms Padmore-Payne says, and to be listened to.
‘They want nurses and other healthcare professionals to have knowledge about their illness and how they should be treated.’
To this end, she has set up education days to empower healthcare professionals, patients and their families.
More than 375 nurses, junior doctors and allied healthcare professionals have attended her RCN-accredited sickle cell and thalassaemia study days.
She has also presented at South Thames Sickle and Thalassaemia Network awareness days and meetings, and at her NHS trust’s induction for haematology nurses.
Meanwhile, she has set up transition workshops on Saturdays to empower the young adults to look after themselves and makes videos with transitioning adults to share with others that follow.
Bid to reduce young adult mortality and morbidity rates
‘Encouraging peer support has been important to show people they are not alone’, says Ms Padmore-Payne.
All of these elements are a bid to reduce mortality and morbidity rates. ‘Between the ages of 18 and 30, young adults often get lost to follow-up,’ she says.
‘By the time they come back to us, they are in multi-organ failure or heading towards dialysis or they've had strokes.
‘We have improved our non-attendances rates remarkably.
‘Sharing pathways, reducing A&E visits, being flexible and contactable for the young adults, and having link supports in places have worked well.’
Care plan has improved young adults’ experience of emergency department
A care plan introduced by Ms Padmore-Payne within the service has also helped improve the experience of young adults when they present to the emergency department.
The plan is on their electronic record, and the young person, their families and carers have a copy.
It contains clinical guidelines and states all the things they should have in terms of pain relief and analgesia.
Feedback has been good – it works.
Ms Padmore-Payne says patients and their parents are given the questionnaires to measure the service’s impact and they have had interviews to share their thoughts with an external researcher.
A recent audit of the service showed it supports 213 young adults between the age of 14 and 25.
She sees an average of about 20 young adults a month across children and adolescent clinics and the pain walk-in service.
But, as she points out, sickle cell and thalassemia are lifelong conditions. ‘I have reams and reams of phone calls and text messages. I start the process from the age of 14 in the paediatric clinic and I stay with them right through until they're 25.’
Transition pathway has been shared with colleagues in diabetes, cardiology and other medical teams
study days
Even some at that age are reluctant to let her go.
‘I will be the constant in their life, and I've gained links to nurses so that I'm not the only person doing the roles.
‘I encourage others to support and advocate for our young adults.’
Ms Padmore-Payne also volunteers with her NHS trust’s outreach adolescent service covering transition in any specialty.
She has shared the pathway she developed with colleagues in diabetes, cardiology and other medical teams. ‘Ideally it would be the same for every young adult – we just want to make sure that they all have a good experience,’ she says.
‘Giselle developed and improved standards for managing children with haematological problems and provided competency-based training to staff to enable a seamless passage of care on the patient journey’
Joan Myers, 2020 RCNi Nurse Awards judge
Now she is seeking funding for a young adult unit where admitted patients aged 16 to 25 can be around their peers, with the support of regular staff who know them.
She is also working on ways of raising more awareness and delivering more education programmes for healthcare professionals UK-wide to better improve transition services.
Co-producing with young people accommodated their unique preferences
RCNi Nurse Awards judge Joan Myers calls Ms Padmore-Payne a ‘dynamic, innovative, forward-thinking and inclusive leader’.
Ms Myers says her success lay in co-producing with young people by listening to their needs and adapting services to accommodate their unique preferences.
‘Giselle developed and improved standards for managing children with haematological problems and provided competency-based training to staff to enable a seamless passage of care on the patient journey.’
- RELATED: Preparing young people with complex needs and their families to transition to adult services
A parent’s perspective: ‘To have someone support us has been a lifeline’
Dorothy Ansa has a son and daughter with sickle cell disease. She says the support given by Giselle Padmore-Payne has been a lifeline.
Ms Ansa recounts a recent experience when she was sent back and forth between children’s and adult emergency departments with her 16-year-old son David, who was refused admittance to an adult ward he was directed to. She called Ms Padmore-Payne who, despite not being on shift, came to her rescue.
‘In three minutes, I had three doctors in David’s A&E space and they pushed him into a paediatric ward,’ says Ms Ansa.
‘That’s Giselle – she will help you out of hours or from anywhere.’
‘As a parent it can be difficult supporting your children with a lifelong illness, so having someone supporting us as Giselle does is a lifeline’
Ms Ansa says both her children have now taken part in transition workshops including ward visits which have helped prepare them for adult services. They know more about how to manage their condition since Ms Padmore-Payne’s sessions and have more confidence.
‘I always attend the workshops that parents are allowed to attend and my children always attend their sessions – we get so much from them.
‘As a parent, it can be difficult supporting your children with a lifelong illness so having someone supporting us as Giselle does is a lifeline. It should be the same for every family living with this challenge.’
Find out more
- Roald Dahl Specialist Nurses
- Sickle Cell Society
- Southampton Children’s Hospital – Ready Steady Go: Transition Programme
- UK Thalassaemia Society