ARK VOL.5
The Voice of Healthcare
In this issue MATERNAL INSTINCTS CHILDREN IN NEED A LEARNING CURVE SAVE THE CHILDREN PIER PRESSURE THE COLLABORATIVE APPROACH
Caring for people is at the heart of everything we do POWERED BY
MATERNAL INSTINCTS No one tells you that when you see the single blue line appear on the 'stick', that you instantly become a parent. And no one tells you that after a brief period of elation, the worry starts to settle in. Recently, I found out that my husband and I are expecting our first child and whilst moments of excitement far outweigh the moments of worry, worry I do. How can I give my child the best start in life, what supplements do I need to take, how much sleep should I be having? You instantly become a parent and want the best for your bundle of joy that is slowly developing. You'll be pleased to know that I am reassured by my Mum that the worry will stay with me forever and that is being a parent! All these questions and concerns are there hoping that you have a healthy baby growing inside you. So, I can only imagine how this changes if or when you find out that this tiny human will need extra special care in a hospital or by a team of nurses at home because they are unwell. This edition of ARK, which focuses on Paediatric care, has reassured me that if in the next 18 years I need to call upon the professionals we have the best in the UK. Nurses, Anaesthetists and forward thinkers who will have my child's best interests at heart. People who will ensure the family is cared for and the child will feel at home in a setting such as Evelina Children's Hospital. With a skill set that is every growing in this area I can see the future is bright for Paediatric Healthcare and something I need not worry about. Editor, Laura Royston Editor in Chief Rachel McClelland
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It is an overwhelming thing to look at a new baby, especially if that baby is your responsibility. Gazing at your infant, tiny and sucky in its nest of blankets, you are struck by its smallness, its vulnerability, its By Geraldine Bedell physical precariousness. That feeling never quite leaves you. Over and over again, as your child grows up, you will be reminded, by ailments and scrapes, by bouts of acute illness or long-term conditions, that it’s your job to keep this child alive. It’s the most fundamental thing you do as a parent: try to get your child through to adulthood. Things are going to go wrong, though. And when children don’t feel well, they can’t always tell you what’s the matter. They don’t have the words or the experience to describe their symptoms with the sort of precision called for, not least by your frantic googling. They think you actually know what you’re doing. They don’t realise when you say briskly that some Calpol or ibuprofen and a good night’s sleep will sort it out, that you’re just playing for time. They don’t know what pain should feel like. They aren’t in a position to say, ‘sorry mum, but I don’t think “just a bruise” should hurt this much.’ Trust your maternal instincts, you’re told. Which is all very well, but my maternal instincts when it comes to my children’s health turn out to be absolutely terrible. I once managed to send my eldest son to school with a broken arm a full 16 hours after he’d fallen over. The head teacher called me after assembly. ‘I think you’ll find,’ she said, in her voice for dealing with incompetents, ‘that he needs to go to A&E. He flinches every time he moves.’ Even parents of children who are basically pretty healthy worry about whether they’re doing the right thing. I have fretted that one of my children was eating
too much (you don’t want to be one of those mothers who’s responsible for childhood obesity!) while worrying that another one ate too little. (Doesn’t he mind being the smallest child in the class? Or – oh dear – is it me that minds not having managed to produce a big one?) You don’t realise, before you have children, that you will spend much of their childhood wrestling with anxieties of this kind, many of them pointless, misplaced, and, in my case, ill-informed. Every time they have a hint of a rash, you will rush to press glasses on their skin, you will force them to look at bright lights, you will make them nod their heads up and down. You will not be one hundred percent sure what you are looking for. If you are lucky, you will mainly have to contend with a string of minor ailments, from cradle cap to teething pain, headlice to coughs and colds, nosebleeds to molluscum, ear infections to chicken pox. Which is not to say that, at the time, these aren’t distressing and disorientating. The most bewildering childhood illnesses are often the non-specific ones, the pale faces, the listless eyes, the high temperatures: the sort of symptoms that probably mean they’re wiped out, have a virus, need to rest – but which could indicate something serious for which you will forever blame yourself if you don’t alert the GP in time. Even children who are basically healthy have moments when they confront their parents with bleak terror. I once turned up at A&E drenched in blood, wearing a dress I had to throw away afterwards it was so soaked, carrying a two year-old who was spurting like something in a
Hammer House of Horror movie. She had been spinning around in the back garden and fallen onto the kitchen step, cutting her temple. Who knew that a two-year-old contained so much blood? She was fine, didn’t even need a stitch. (We were living in the Middle East, it was a funny private hospital, she probably should have had a stitch, but never mind. She was fine.) If you are less lucky, paediatric healthcare may become a much larger part of your life. On the two occasions when I have spent time in hospital with a child – once when my son had appendicitis, once with a friend’s daughter, who had cancer – I have been profoundly grateful for the system that surrounded us, the equipment, the expertise and, above all, the care. This is true of many hospital experiences, of course: we are usually grateful to our doctors and nurses. But it is precisely because as a parent, you feel so desperate, so lost, and so inadequate, that experiences of paediatric healthcare are so intense. It’s not just your life in their hands. It’s more important than that.
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CHILDREN IN NEED
AN INTERVIEW WITH CAROLINE DAVIES With ‘Dr Dog’ on the ward, The Giggle Doctors making the children laugh out loud and a helter-skelter slide, Evelina London Children’s Hospital sounds more like a funfilled theme park than a place of healing. But as consultant anaesthetist Dr Caroline Davies explains, the entertainment is just one aspect of a standard of paediatric care By Pat Hagan that is one of the best in the country. Once a week, Magee and Nala visit Evelina London Children’s Hospital.
The result? An ‘outstanding’ verdict from the Care Quality Commission.
They’re not relatives of a sick child, or hospital staff turning up for a shift.
‘That was a marvellous boost for every member of Evelina London’s staff,’ says Caroline.
In fact, Magee is a soft fluffy Cockapoo and Nala is a gentle Golden Retriever and while their presence on the wards may not heal the physical injury of Evelina London’s sick inpatients, it has tremendous benefits for the children and their parents. Magee and Nala are specially-trained therapy dogs from Pets as Therapy who love to be stroked and cuddled – perfect for a sick child who craves animal company and misses their pets back home. On the days when the dogs are absent, it might be that bedbound patients get a visit from The Giggle Doctors, a clown-based troupe who tell jokes and do magic to cheer up those at a low ebb. The hospital building itself on the site of St Thomas’ Hospital was designed especially for children and with the help of children. It first opened its doors 10 years ago. Already, Evelina London has become known for its philosophy of creating an environment that does as much as possible to ease the stress of serious illness on the young and fragile. But underpinning that, as consultant anaesthetist Dr Caroline Davies explains, is a culture of high-quality care that ensures Evelina London boasts, among other things, some of the best neonatal survival rates in the UK, a kidney transplant service that accounts for a fifth of all UK paediatric kidney transplants and a roll-call of around 55,000 young patients a year.
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Staff at Evelina London are doing outstanding research, developing top notch services and introducing all sorts of innovations to optimise patient care.’ Excellent clinical care aside, the sheer scale of the planning and design that went into building Evelina London was breath-taking. But that careful planning is paying off. One example is the built-in school for children. ‘The hospital school is brilliant,’ says Caroline. ‘The children seem to love it, even when they are quite poorly. ‘It is fantastic because it distracts them, entertains them, helps them keep up with their schooling and gives them some normality and routine during their hospital stay.’ ‘For children that can’t get downstairs to school, a teacher may visit them on the ward, to sit and read with them.’ The deployment of play specialists also has a major impact.
very anxious children into the anaesthetic room and they are very good at gauging what sort of toys or games will captivate a certain child and how to distract them during the induction of anaesthesia. ‘Then there are the lovely visiting musicians who play and sing on the wards.
‘The atmosphere feels happy and relaxed. There is a lot of commotion but in a good way! ‘It’s a good way to help the children to pass the day.’ Evelina London is part of Guy's and St Thomas' NHS Foundation Trust. Among other things it features 161 inpatient beds (including 20 intensive care beds), a 51-cot neonatal unit, five operating theatres and one cardiac theatre. There is a full children's imaging service with MRI scanner, x-ray and ultrasound, a kidney dialysis unit, an outpatient’s department and a medical day care unit. It most definitely is a hospital – just built not to look or feel like one. For example, inpatients are deliberately housed near the top of the seven-storey building – so they get the best views of Lambeth Palace and Archbishop’s Park.
Caroline says: ‘They are crucial because they help to distract children who may be feeling anxious and upset and they are a huge help to us anaesthetists when patients are anxious or may have challenging behaviour when they come to theatre.
And the building is themed around the natural world so that the ground level represents the sea, the top floor the sky.
‘A Play specialist will often come down with
‘And that’s important,’ says Caroline.
Everything, it seems, is geared towards keeping patients as happy as possible.
‘If children have a positive experience during their admission, it will provide a good foundation for future hospital visits.
But every child is different. It can be quite difficult assessing pain in, say, a 12-year-old child with severe learning difficulties.
‘Evelina London is quite small and one of its strengths is that you can liaise with other staff very easily.
‘If a child has a chronic medical condition, they are probably going to come into hospital quite a lot. So, it is very important to give them the best experience you can and make it feel as homely, safe and friendly as possible.’
‘We have a variety of pain assessment tools that we can use for children who can’t communicate verbally and we try to involve parents and carers as much as possible.’
Evelina London is able to utilise the vast knowledge and expertise of its staff as it evolves.
Pain control, Caroline’s speciality, is also crucial in this respect. She says: ‘People may not always remember much about their hospital stay, but they are more likely to remember it in a negative way if they experienced a lot of pain. ‘One of the most important factors for parent and child satisfaction with their hospital stay is good pain control‘.
But as Caroline admits, there are challenges when treating a wide age range - from tiny babies to teenagers. ‘We have to ensure that each child’s method of pain relief is tailored specifically to their needs and also managed safely on the ward by the nurses caring for them. ‘We have very clear protocols and guidelines to aid clinical staff caring for our patients.
One popular initiative is its regular Dragons Den-style sessions, where staff can pass on their ideas about how to improve things. She adds: ‘It is about encouraging people to focus on ways to make things better in every area of patient care. ‘Everyone feels they have a voice and that is very important.’
Training is a constant theme and is essential to enable nurses to assess and manage pain in children of all ages.
If you’d like to share your story, email arkmagazine@cmemedical.co.uk
A LEARNING CURVE Elin Wahlstedt is from Sweden and a regular contributor to the CME Medical Knowledge Centre. Elin has a rare medical condition that makes her dependent on Total Parenteral Nutrition (TPN). Here she shares her story of growing up By Elin Wahlstedt with her condition. I got sick when I was four and I honestly don’t remember much from the beginning of my journey. I have some memory flashes but it’s hard to make out which are actual memories and which are just pictures I’ve created from stories my parents have told me. What I’m trying to say is that I can’t remember a life before my diagnosis. In my mind this is how it’s always been and probably how it’s always going to be. Growing up, I’ve spent most of my time in the hospital, sometimes it feels like that’s where I spent all of my time. According to my mother our routine used to look a little bit like this: Every Monday I had a regular visit to the hospital to make sure everything was okay and to get some treatments. The problem was it was never really okay and this lead to us having to spend the night, or two, or three. Sometimes we had to stay longer. Then we got to go home for a few days and on Monday we went back for our regular visit and the whole thing started over again. I think it’s safe to say we were regulars at the
hospital for most of my time growing up, which was fine when I was in kindergarten but it soon became a problem when I started school. Keeping up with school can be hard enough even without weekly visits to the hospital. Luckily, I was able to get help with my education through a teacher working at the hospital. I’m thankful to her and the little school she had located in the unit. I remember taking tests in her office and how she would come visit my room with homework a few times a week. I wasn’t really a fan of it back then but today I’m happy she kept pushing me, otherwise I would probably have had to retake a year or two.
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When I got older we learnt how to treat me at home instead. Sure, there were still sometimes I had to visit the hospital but the older I got the less time I had to spend there. The problem, though, was that I spent more time at home in bed than I did in school. I therefore had a period of time where I was home schooled. A few times a week a teacher came to my house and taught me math, Swedish and English. At this point I think I was in third grade so I was probably
about ten years old. Thanks to this home schooling it was easier for me to get back into my school class again. Against all odds, and because of the help I got with my schooling, I managed to graduate with good grades and today I’m in college studying to be a nurse. My hope is to be able to give all the comfort and joy my nurse gave me to another sick and scared child. I want to give them hope for a better tomorrow.
SAVE THE CHILDREN After a century of improving health and survival rates, Britain’s child health services are at a crossroads. Rising levels of obesity and an epidemic of inactivity threaten to undo much of the progress, while stretched resources mean cash must By Pat Hagan be spent more carefully than ever before. So what lies ahead? According to some experts, Britain’s current generation of young children will be the first in many decades to die at a younger age than their parents.
the government for stepping back from imposing tough regulations on the food industry, rather than encouraging it to move in the right direction.
It’s a gloomy outlook that throws into sharp focus the full extent of the potential crisis facing child health.
The British Medical Association said it was ‘incredibly disappointing’ that there was no crackdown on food marketing and promotion.
The battle against deadly infectious diseases that used to wipe out millions worldwide has largely been won in developed nations, thanks to vaccines and higher standards of public health. But the battle against what can arguably be described as self-inflicted modern ailments triggered by unhealthy lifestyles is far from over. The government’s long-awaited childhood obesity strategy, the brainchild of David Cameron when he was in office, was finally delivered in the summer, after repeated delays of a year or more. But it was met with widespread disdain. It featured no mandatory curbs on junk food advertising and fell short of imposing compulsory sugar reduction in popular children’s foods, favouring a voluntary scheme where industry is encouraged to gradually reduce levels by a fifth over the next five years. However, the government is going ahead with its sugar tax on soft drinks. The tax will take effect in 2018 and the cash generated invested in sport in schools and breakfast clubs. Exercise-wise, the plan calls on primary schools to help pupils achieve 60 minutes a day of physical activity – half through PE classes and half through ‘outside school’ activities. Health Secretary Jeremy Hunt last year promised the obesity strategy would feature draconian action. Instead, it is a much watered down version of the original blueprint and critics attacked
Royal College of Physicians president
Professor Jane Dacre said the government had come up with a ‘downgraded plan’ that failed to tackle the marketing of ‘sugarfilled and unhealthy foods’. And Professor Neena Modi from the Royal College of Paediatrics and Child Health said it was a ‘weak plan’ which promised ‘no bold action’. She added: ‘Obesity kills as surely as smoking; Government took on the tobacco industry effectively, although it was a tough challenge, and can do it again now.’ Government officials said they opted for a voluntary sugar reduction scheme over legislation so the food industry could start taking steps to reduce sugar immediately, rather than waiting for the law to be changed. One in three children in the UK is overweight or obese. This makes them more likely to be obese as an adult, raising their risk of heart disease, cancer and diabetes. Obesity already costs the NHS more than £4bn every year and Health Service Boss Simon Stevens has warned without drastic action it is going to bankrupt the service. It is without question the biggest child health problem Britain currently faces. But it’s not the only one. Concerns are also mounting about the state of child mental health, with rising numbers being treated for anxiety and depression. Earlier this year, a survey found eight-year olds in England were less happy than those
in Estonia, Poland and Turkey, ranking 13th out of 16 countries polled. Only South Korea, Nepal and Ethiopia were worse. Children said they were unhappy with their looks and physical appearance, school, relationships with teachers and where they lived. According to the Royal College of Paediatrics and Child Health, poverty
remains a major factor behind children’s physical and mental health – even in modern Britain. It reckons one in four children – or up to four million in total – live in poverty. Latest figures show almost a quarter of a million children in England alone are receiving care for anxiety, depression and eating disorders. Alarmingly, nearly 12,000 of these were boys and girls aged under five. Again, experts blame growing pressures on the young, including the need to excel academically, look good and be popular. Other factors such as family breakdown are also thought to be driving more to seek help. So while the child of today can be protected against the ravages of infectious disease and poor hygiene, the threat from modern lifestyle-related illnesses is every bit as serious.
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PIER PRESSURE
AN INTERVIEW WITH GARY CONNETT
By Pat Hagan
Changing paediatric practice from the bottom up and with no central funding might sound like an ambitious task. But that’s what the Paediatric Innovation and Education Research Network aims to do, as clinical lead Dr Gary Connett, from Southampton Children’s Hospital, explains. The great American comedian and actor W.C. Fields famously said ‘Never work with animals or children’. But then he was talking about the arts, not medicine. And for Dr Gary Connett, consultant paediatrician with a special interest in respiratory medicine, there is no greater attraction in professional terms than working with youngsters. ‘I think the thing about children is they don’t take any nonsense’ he says with brutal honesty. ‘Young people call a spade a spade and are honest about what they see in front of them. ‘That’s quite humbling and brings us all down to earth. ‘I guess the most rewarding thing is being able to positively impact someone’s life from such an early stage.’ That guiding principle of improving children’s lives is what underpins the Paediatric Innovation and Education Research Network (PIER), set up two years ago by clinicians and other health professionals in the Wessex region to standardise and gradually improve quality of care for all sick youngsters, wherever they are in the region. It’s raison d’être is to ‘support integrated, child centred, multi-professional care at all levels through group learning, shared best practice, the development of regional guidelines and original research’. It aims to flag up good practice in paediatrics and disseminate it to all corners of the Wessex region, driving up quality, sharing skills and, crucially, reducing variation in the standards of care patients receive.
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If that all sounds a bit worthy, it’s important to remember this is an initiative being driven by the desire of those at the coal face of paediatric medicine to make things better, not by a conventional top-down government approach. ‘PIER is a bottom-up initiative,’ says Dr Connett. ‘It’s about paediatricians and other healthcare professionals trying to improve care around the child on a regional basis. ‘The difference between PIER and what people did in the past is we are multi professional in the education and training work we do. ‘We transcend the boundaries of the individual district hospitals and the regional centre. It’s about being joined up in a meaningful way that is centred around better care for patients. That’s it in a nutshell.’ But that’s just the objective. Putting it into practice, says Dr Connett, has been a challenge, not least because of the need to break down the barriers between professions in order to create meaningful multi-disciplinary care. ‘We have to develop the profile of the professional roles of nurses, dieticians, physiotherapists and other healthcare workers. ‘We need them to feel valued and able to contribute as part of a team, rather than working in silos. ‘We have a relatively small organisation and there are many silos and many communication challenges.’ But perhaps the biggest challenge so far has been running PIER on a shoestring. There is no central funding, says Dr Connett, so the emphasis is on people ‘working within their own professional
capacity’ to enhance what they are doing. Money aside, there are cultural challenges that need to be faced as well. One, Dr Connett says, is the use of simulation-type training to assess and improve working practices. It’s not something everybody initially welcomes but there is widespread acceptance that it is one of the best ways to drive up standards across the board. ‘We think it is a very powerful way of learning as it emulates real life scenarios. ‘But getting people to embrace that culture of being put into a simulation environment and then having their performance critiqued and given feedback on how to do better is a cultural change for many.’ Another example of how PIER is changing things is paediatric nurse training, taking it out of hospital ‘silos’ and delivering it on a regional basis – so that standards are uniform across the area. Dr Connett says: ‘This is a model of care that is transferrable. ‘We are challenging the way we train healthcare professionals in silos and asking organisations to think about how we can have more meaningful joined up training. ‘We want consistent good practice, providing specialist care from all health care professionals wherever children are. ‘So it’s not a postcode lottery or based upon who you are seeing where. ‘Instead, you’re being looked after, wherever you are in a region, according to best practice because the people who are providing the service are joined up and working together across that locality.’ It’s still early days for PIER. But it has just held its first annual conference, frequented by everyone from
doctors and nurses to dieticians and play therapists. And if Dr Connett is right, things can only get bigger and better. ‘I think we need to extend paediatric training further into primary care. ‘The learning and the best practice needs to be much more integrated into primary care and we need to do that in a way that enhances and empowers what GPs and health visitors are already doing.
‘We also need to be thinking a lot more about prevention and education around best practice towards keeping children healthy. ‘There is an unmet need in terms of prevention. ‘But we are hopeful and optimistic because there is a lot of energy around this project and in particular from amongst our trainees. ‘We are extremely fortunate in that we have some fantastic junior trainees who have great vision and fresh ideas.
‘We aim to empower them to move forward with their own initiatives because, after all, they are our future leaders.’ For further information about PIER, please visit http://www.piernetwork.org/
THE COLLABORATIVE APPROACH Elaine Cobbold, Perioperative Practitioner and Nikki Thiemicke, Paediatric Outreach Nurse based in Paediatric HDU from the Royal Alexandra Children’s Hospital, part of Brighton and Sussex University Hospital Trust, tell us the story behind their shared passion and the wonderful events that they are hosting, which they hope will encourage collaboration and best practice across the country in an area of healthcare where there can be so much at stake… By Sam Newman What makes you passionate about your work? [Elaine] Providing the best possible care for children and their families. I work in a theatre environment and it is vitally important that children are well prepared and cared for in the perioperative phase. We endeavour to make that journey as smooth as possible for children and their families, to ensure that their experience of a potentially scary event is as positive as possible. Doing so successfully can have a huge beneficial impact on future hospital encounters. My colleague Nikki is a Paediatric Outreach Nurse based in HDU – there is a significant overlap between our departments and we wanted to promote this inter-departmental working within the recent study day. How was the recent event? [Elaine] In our hospital the vast majority of surgery is performed as elective day cases, with a smaller number of cases requiring either ward stays or HDU admission. For that reason it made sense to tie these two subject areas together as what happens in theatre will have an impact on the care needed on the wards. However, we are aware that a lot of children’s services take place in general hospital settings so the day itself was primarily aimed at theatres nurses, ODPs and ward nurses caring for children in settings that may not be in dedicated children’s hospitals. These events are also an excellent way for healthcare workers to meet and discuss local practices. Allied healthcare professions do not always facilitate this kind of networking and communication. The day was exceptionally well attended (65 delegates from around the country) and the feedback we received was very positive. The
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day itself consisted of topics such as ‘The Paediatric Airway’, ‘Managing Common Emergencies in the Perioperative Setting’, ‘Pharmacology of Commonly Used Drugs’, ‘Assessment and Management of Acute Pain in Children and Young People’ and ‘Minimising Perioperative Distress’. Our speakers came from nursing, pharmacy, theatre and play therapy backgrounds and all had current and relevant paediatric experience. I would like to thank all of the companies that supported us financially, by exhibiting at our event and spending time talking with speakers and candidates. What prompted you to hold this type of event? [Elaine] There is quite a lack of this kind of training available for paediatric nurses and ODPs. We also made the event free for students from any trust. The feedback we received very much spoke to the reasons that we set the event up in the first place i.e. there was a gap in the market, great for networking, sharing of local practices and learning from other centres and departments. The students who attended all said that the specific focus of the day was particularly useful as it complemented their studies and placements. The funds raised from the day itself are then used to send our own staff on relevant training days. With budget constraints, this type of education funding becomes ever more important and it is gratifying to be able to support this. Do you plan to run more events? [Elaine] I am already planning to run a ‘Difficult Airway Management’ day in our simulation centre. By utilising the simulation
trainers and kit, I hope to be able to run a much more practical day and one very specifically aimed at staff working in paediatric anaesthetics and recovery. In terms of the day we just ran, this is the second one in two years and whilst I would like to think that we will run more in the future, I did feel that each of the subjects we covered could easily fill a study day on their own; so maybe that is something that we will look to develop in the future. One of the great things about doing this is the collaboration between myself and Nikki. You have a lot of crossover and it was great to be able to promote a multi-disciplinary team approach through our organisation. How do you see things developing within your trust? [Nikki] There will be enhanced staff training in relation to caring for the child and young person with an epidural for post-operative pain management. Each member of nursing staff will then have to work through specific competencies to ensure improved delivery of care. The child and their family are at the centre of any recommendations and the goal to provide them with the best care, as close to their home as possible. Now, we are using less epidural analgesia, so to try and to get all the nursing staff competent is challenging. We are using continuous local anaesthetic infusion far more frequently with great success and may hope to promote their use in neonatal surgery in the near future.
The Voice of Healthcare
Our next issue of Ark will focus on the Future of Healthcare. If you would like to contribute please email Rachel at rmcclelland@cmemedical.co.uk If you would like to request hard copies or if you would like to receive future issues of Ark please email arkmagazine@cmemedical.co.uk POWERED BY