Tracy Oakden tells Jennifer Trueland how Roald Dahl’s Marvellous Children’s Charity is ensuring that young people with rare conditions get the treatments they need
Nursing care can be marvellous medicine As a child, Tracy Oakden’s favourite Roald Dahl book wasn’t Charlie and the Chocolate Factory, or the delightful Matilda, now wowing West End audiences as a musical. Rather, she was drawn to The Twits, the story of a humorously vindictive couple who play practical jokes on each other. ‘He had a horrible beard and was always picking food out of it,’ she muses. ‘Yes, it was disgusting, but it’s the sort of thing a lot of children love.’ Like the famous author, Ms Oakden has a good idea of what makes children and young people tick. So perhaps it is fitting
that she holds one of the specialist nurse posts created by the Roald Dahl Marvellous Children’s Charity. Since 1991, the organisation has developed 48 specialist children’s nursing posts, and one allied health professional post, in the UK. Most (31) are in epilepsy, ten in acquired brain injury, seven in haematology and one in palliative care. The charity gives each post two years of funding, after which time investment is taken on by the host NHS organisation for a further three years at least, guaranteeing the post for five years. According to the charity’s chief executive Richard Piper, all bar one of the
USING FUN TO MOTIVATE YOUNG PEOPLE As a specialist nurse in Nottingham’s sickle cell and thalassaemia service, Adewumi Ajayi knows how the condition can affect young people’s lives. But one patient inspired her to take action. ‘There was a young person who had dropped out of college twice and become pregnant,’ she says. ‘I knew we had more to do to ensure our young people had the right guidance and motivation to do something with their lives. If people are not motivated, they will give up and blame it on having a long-term condition.’ She applied for funding (just over £5,000) under the first programme run by Roald Dahl’s Marvellous Children’s Society and the Burdett Trust, which provided grants for nurse-led innovation projects in children’s haematology and neurology.
Her project, Your Future in Your Hands, sought to raise aspirations in young people living with sickle cell and thalassaemia. They were invited to attend five group sessions with activities designed to improve knowledge about the condition, raise self-esteem and reduce isolation. They were fun – the first session was held at a bowling venue; another was a drama workshop. ‘The young people really liked it and we hope it made a difference to them,’ she says. ‘The sessions improved the trust and relationship between the team and these young people.’
posts created so far have then been mainstreamed into the NHS. Ms Oakden, clinical nurse specialist in paediatric epilepsy with Barts Health NHS Trust, based at the Royal London Hospital, believes that her post makes a difference. ‘I work with the neurology team at the Royal London looking after patients from birth to age 16 years,’ she says. ‘There is still a lot of fear and stigma around epilepsy. Patients, and parents, really appreciate having someone they can contact if they need specialist help and advice. I try to be as accessible as possible, and available to speak to people at short notice.’ Her role includes working in outpatients, helping children and families on admission to hospital, and being an expert source of help and support to other health professionals. Roald Dahl himself had a high opinion of nurses, says Dr Piper, and the charity was set up by Dahl’s widow, Felicity, partly because of the author’s own experiences of illness. ‘He really appreciated the compassionate care he received from nurses; the personal touch,’ says Dr Piper. ‘And that’s what we try to promote.’ As well as funding the Roald Dahl Marvellous Children’s Nurses, the charity has teamed up with the Burdett Trust for Nursing to fund 12 nurses with a grant of up to £15,000 each to try
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SUMMARY
The Roald Dahl Marvellous Children’s Charity has been funding specialist children’s nursing posts since 1991. The charity, set up by the famous author’s widow, focuses on rare conditions that are often overlooked. Its latest initiative, in collaboration with the Burdett Trust, is supporting nurses to develop ideas to help children become emotionally resilient. Author Jennifer Trueland is a freelance journalist go, to try something difficult,’ adds Dr Piper. The programme follows the success of a previous partnership with the Burdett Trust, which funded 22 nurse-led projects between 2010 and 2012, focusing on neurology and haematology (see box). A common element across the programmes, and the specialist nursing posts, is a recognition that healthcare professionals have a vital role to play in the wellbeing of children, as well as addressing their immediate health needs.
Emotional focus
out an idea to help children and young people with a long-term condition to become – and remain – emotionally resilient. The latest Roald Dahl programme will prioritise projects that aim to help children with a rare or undiagnosed illness, or conditions that otherwise receive little attention. Called the Marvellous Nurse Inventing Room, it is named after the room
in Charlie and the Chocolate Factory where Willy Wonka’s new inventions (such as everlasting gobstoppers) are tested out. ‘Nurses know what makes a difference to children,’ says Dr Piper. ‘We are looking for ideas that give support and care to people with chronic conditions, and which can be repeated. ‘It doesn’t matter if it doesn’t work – we want people to have a
Clinical nurse specialist Tracy Oakden with one of her patients, Sam
‘It is about looking at the emotional and psychological needs of the child and family,’ says Dr Piper. ‘Hospitals can damage the happiness of children. For some, the hospital is their social environment; it’s part of the environment in which they are growing up.’ Nurses per se are conspicuous by their absence in Roald Dahl’s children’s books. But Dr Piper reckons that the characteristics of Miss Honey, the gentle, much-loved teacher in Matilda, are embodied in the charity’s nurses. This year marks the 50th anniversary of Charlie and the Chocolate Factory. Dr Piper hopes that, later in the year, the charity might be able to mark this by announcing its 50th specialist post. But what of its present nurses – does Ms Oakden see herself as a Miss Honey? She is not sure. ‘It’s important to have that personal side, and to be compassionate,’ she laughs. ‘But when I’m talking to a teenager about the importance of compliance with treatment, then maybe I’m a bit tougher than Miss Honey!’ NS
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Nursing care can be marvellous medicine As a child, Tracy Oakden’s favourite Roald Dahl book wasn’t Charlie and the Chocolate Factory, or the delightful Matilda, now wowing West End audiences as a musical. Rather, she was drawn to The Twits, the story of a humorously vindictive couple who play practical jokes on each other. ‘He had a horrible beard and was always picking food out of it,’ she muses. ‘Yes, it was disgusting, but it’s the sort of thing a lot of children love.’ Like the famous author, Ms Oakden has a good idea of what makes children and young people tick. So perhaps it is fitting
that she holds one of the specialist nurse posts created by the Roald Dahl Marvellous Children’s Charity. Since 1991, the organisation has developed 48 specialist children’s nursing posts, and one allied health professional post, in the UK. Most (31) are in epilepsy, ten in acquired brain injury, seven in haematology and one in palliative care. The charity gives each post two years of funding, after which time investment is taken on by the host NHS organisation for a further three years at least, guaranteeing the post for five years. According to the charity’s chief executive Richard Piper, all bar one of the
USING FUN TO MOTIVATE YOUNG PEOPLE As a specialist nurse in Nottingham’s sickle cell and thalassaemia service, Adewumi Ajayi knows how the condition can affect young people’s lives. But one patient inspired her to take action. ‘There was a young person who had dropped out of college twice and become pregnant,’ she says. ‘I knew we had more to do to ensure our young people had the right guidance and motivation to do something with their lives. If people are not motivated, they will give up and blame it on having a long-term condition.’ She applied for funding (just over £5,000) under the first programme run by Roald Dahl’s Marvellous Children’s Society and the Burdett Trust, which provided grants for nurse-led innovation projects in children’s haematology and neurology.
Her project, Your Future in Your Hands, sought to raise aspirations in young people living with sickle cell and thalassaemia. They were invited to attend five group sessions with activities designed to improve knowledge about the condition, raise self-esteem and reduce isolation. They were fun – the first session was held at a bowling venue; another was a drama workshop. ‘The young people really liked it and we hope it made a difference to them,’ she says. ‘The sessions improved the trust and relationship between the team and these young people.’
posts created so far have then been mainstreamed into the NHS. Ms Oakden, clinical nurse specialist in paediatric epilepsy with Barts Health NHS Trust, based at the Royal London Hospital, believes that her post makes a difference. ‘I work with the neurology team at the Royal London looking after patients from birth to age 16 years,’ she says. ‘There is still a lot of fear and stigma around epilepsy. Patients, and parents, really appreciate having someone they can contact if they need specialist help and advice. I try to be as accessible as possible, and available to speak to people at short notice.’ Her role includes working in outpatients, helping children and families on admission to hospital, and being an expert source of help and support to other health professionals. Roald Dahl himself had a high opinion of nurses, says Dr Piper, and the charity was set up by Dahl’s widow, Felicity, partly because of the author’s own experiences of illness. ‘He really appreciated the compassionate care he received from nurses; the personal touch,’ says Dr Piper. ‘And that’s what we try to promote.’ As well as funding the Roald Dahl Marvellous Children’s Nurses, the charity has teamed up with the Burdett Trust for Nursing to fund 12 nurses with a grant of up to £15,000 each to try
24 august 27 :: from vol 28 no 52 :: by 2014 STANDARD Downloaded RCNi.com ${individualUser.displayName} on Nov 23, 2015. For personal use only. NoNURSING other uses without permission. Copyright © 2015 RCNi Ltd. All rights reserved.
SUMMARY
The Roald Dahl Marvellous Children’s Charity has been funding specialist children’s nursing posts since 1991. The charity, set up by the famous author’s widow, focuses on rare conditions that are often overlooked. Its latest initiative, in collaboration with the Burdett Trust, is supporting nurses to develop ideas to help children become emotionally resilient. Author Jennifer Trueland is a freelance journalist go, to try something difficult,’ adds Dr Piper. The programme follows the success of a previous partnership with the Burdett Trust, which funded 22 nurse-led projects between 2010 and 2012, focusing on neurology and haematology (see box). A common element across the programmes, and the specialist nursing posts, is a recognition that healthcare professionals have a vital role to play in the wellbeing of children, as well as addressing their immediate health needs.
Emotional focus
out an idea to help children and young people with a long-term condition to become – and remain – emotionally resilient. The latest Roald Dahl programme will prioritise projects that aim to help children with a rare or undiagnosed illness, or conditions that otherwise receive little attention. Called the Marvellous Nurse Inventing Room, it is named after the room
in Charlie and the Chocolate Factory where Willy Wonka’s new inventions (such as everlasting gobstoppers) are tested out. ‘Nurses know what makes a difference to children,’ says Dr Piper. ‘We are looking for ideas that give support and care to people with chronic conditions, and which can be repeated. ‘It doesn’t matter if it doesn’t work – we want people to have a
Clinical nurse specialist Tracy Oakden with one of her patients, Sam
‘It is about looking at the emotional and psychological needs of the child and family,’ says Dr Piper. ‘Hospitals can damage the happiness of children. For some, the hospital is their social environment; it’s part of the environment in which they are growing up.’ Nurses per se are conspicuous by their absence in Roald Dahl’s children’s books. But Dr Piper reckons that the characteristics of Miss Honey, the gentle, much-loved teacher in Matilda, are embodied in the charity’s nurses. This year marks the 50th anniversary of Charlie and the Chocolate Factory. Dr Piper hopes that, later in the year, the charity might be able to mark this by announcing its 50th specialist post. But what of its present nurses – does Ms Oakden see herself as a Miss Honey? She is not sure. ‘It’s important to have that personal side, and to be compassionate,’ she laughs. ‘But when I’m talking to a teenager about the importance of compliance with treatment, then maybe I’m a bit tougher than Miss Honey!’ NS
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