September 2014 by Sally M

The staff magazine of Great Ormond Street Hospital for Children and the UCL Institute of Child Health

September 2014

Two new ears Find out how Kieran got two new ears, using cartilage from his own ribs, page 10

Find out more abou t the Foundation Trust staff electio ns on page 18

You are invited to the 2014 Great Ormond Street Hospital for Children NHS Foundation Trust

Annual General Meeting (AGM) and Annual Members’ Meeting (AMM) On Thursday 11 September 2014 5.30–6.30pm in the Kennedy Lecture Theatre followed by a reception on the Winter Garden Balcony Address: UCL Institute of Child Health, 30 Guilford Street, London WC1N 1EH

Foundation Trust members and members of the public are all welcome. The meeting is a great opportunity for you to hear from Trust directors on the performance of the Trust in 2013/14. At this year’s meeting the Trust will reflect on its activities, challenges and achievements over the last financial year. There will be a presentation of the Annual Report and Accounts and the Trust will outline its plans for the year ahead. The Members’ Council will present its annual membership report and you can also hear about the forthcoming Members’ Council elections.

Please RSVP: foundation@gosh.nhs.uk

Welcome

Contents

from the Interim

Regulars

Chief Executive

In the news

Word on the tweet

GO Create!

Learnabout

Transformation

Noticeboard

Julian Nettel In the past few months we have been ﬁnalising a new ﬁve-year strategy for Great Ormond Street Hospital (GOSH). This sets out how we plan to achieve the vision of being the leading children’s hospital in the world. If we are to achieve this, the key measure by which we must be judged is the extent to which we improve the lives of the children and young people in our care. That is why we are focusing on understanding our clinical outcome information – how we measure it, how we compare against others doing the same specialist clinical work and how we ensure we are getting better over time.

Features Collaboration at the heart of our work How Professor Martin Elliott’s friendship from his days as a junior doctor helped to create an international database.

A day in the life Eunice tells us about her role as an Occupational Health Nurse.

As the Transformation article in this edition of Roundabout shows (p15), GOSH already has a ﬁrm foundation in understanding our clinical outcomes, as demonstrated by the data published on our website.

Kieran gets two new ears – made from his own ribs Kieran, who was born with bilateral microtia, undergoes a double ear reconstruction using cartilage from his own ribs.

International collaboration is key to this work and is highlighted in the article on page six. It describes how Co-Medical Director Professor Martin Elliot has worked with cardiac surgeons across the world to create a global database of surgical outcomes.

I have ectodermal dysplasia George explains what it’s like to live with this rare genetic disorder.

We are committed to publishing an increasing amount of outcome data at regular intervals. This is important as it drives up the accuracy and timeliness of the data, which enables our clinicians to reﬂect and respond more quickly to drive improvements in care. We also have a duty to let our patients and families know how effective are services are. So we must continue to focus on raising the proﬁle of our clinical outcomes and ensuring that our data is robust.

The copy deadline for the October edition is Monday 8 September. Please note that submitting articles does not guarantee a place in the next issue. Submissions should be sent to publications@gosh.org Editor Sally Mavin, ext *643042 Email: sally.mavin@gosh.org Designer Sharon Leese, ext *643100 Contributors Mark McKenzie-Ray, Corinne Clark and Alice Woodward

Printer Jigsaw Colour, www.jigsawcolour.co.uk Charity logo Great Ormond Street Hospital Children’s Charity. Registered charity no. 235825.

In the news Kieran with his family at Great Ormond Street Hospital after his double ear reconstruction.

This month’s social media highlights from Great Ormond Street Hospital’s (GOSH) Facebook and Twitter accounts.

Dietitians are great at GOSH. Always there to help and listen to what you are saying. We’re just home from laser no. five. Thanks to all the team on Puffin and Penguin Wards and the Dermatology team. Great Ormond Street Hospital (GOSH) patient Kieran Sorkin attracted international media attention after undergoing a double ear reconstruction at the hospital by GOSH plastic and reconstructive surgeon Mr Neil Bulstrode. Nine-year-old Kieran, who was born with bilateral microtia – meaning that neither of his ears were properly developed – underwent a six-hour procedure on 5 August to create a new pair of ears crafted out of his own rib cartilage. BBC National News ran an exclusive story on Kieran, which was then picked up by Radio 4, Radio 5 Live and a range of national newspapers including the Telegraph, Guardian, Independent and Mirror. See page 10 for more. GOSH patients, families, doctors and nurses have played a major role in a national pilot that hopes to analyse the DNA of tens of thousands of people with rare diseases and cancers in order to better understand, and ultimately treat, rare genetic conditions. Since November 2013, many GOSH patients have taken part in the pilot study and have provided blood samples to Genomics England so that they can be studied in detail. GOSH consultant Maria Bitner-Glindzicz spoke about the hospital’s involvement on BBC London Radio’s drive time show. The Sunday Express reported that five UK hospitals, including GOSH, will begin to deliver a potentially life-changing operation on the NHS, which has been shown to help some children with cerebral palsy walk for the first time. The pioneering surgery has previously only been available privately, but the new funding decision could allow about 120 children each year to receive the procedure on the NHS. Former GOSH patient Chloe Spiteri took part in the Commonwealth Games women’s wrestling this summer after spending much of her childhood coming to terms with the effects of Asperger’s syndrome. Articles in the Evening Standard and Daily Star described how Chloe had overcome tremendous adversity to reach the pinnacle of her sport after suffering intense bullying at school. Chloe often experienced up to 10 blackouts or mental ‘absences’ a day and was forced out of her mainstream primary school because of ‘extreme behaviour’. However the youngster defied the odds by obtaining a sports science degree from Brunel University and winning national wrestling titles. Chloe is now setting her sights on competing in the 2016 Olympics in Rio.

Kathy was absolutely outstanding during the three months we spent on Rainforest Ward. Our little man went from not even being able to drink and digest breast milk to taking good quantities of special modular feed and baby rice. Always smiling and pleased to see us, she was quite literally a lifesaver. Brandon is doing brilliantly and we think of you often x Huge thanks to Tom Ember, his surgical team and the staff of PICU @GreatOrmondSt for bringing my daughter through spinal op and post op xxxx The nurses here on Penguin Ward @GreatOrmondSt are really nice, caring and friendly. Can’t thank them enough. To all at the 22q clinic – you’ve been fantastic for my daughters Charlotte and Katie. They are 24 and 22 years old now and doing well. Thank you for being there xx

Join the conversation Facebook: facebook.com/ GreatOrmondSt Twitter: @GreatOrmondSt

Photographing change

Over the past year, GO Create! has been hosting a series of photographers in residence to help document the signiﬁcant changes to patient and staff environments at Great Ormond Street Hospital (GOSH). In February and March 2014, children and young people became the photographers, capturing images of Badger and Dinosaur Wards in the Cardiac Wing prior to its demolition. The Premier Inn Clinical Building (redevelopment Phase 2B), the second part of the Mittal Children’s Medical Centre, will open in 2017 to provide modern clinical facilities for patients, families and staff.

In their photographs, participants thoughtfully illuminated details that may have gone unnoticed to an outside observer, homing in on hand-drawn signs, toys that they enjoyed playing with and friends they have made. Patients and staff formed strong attachments to their Cardiac Wing ‘homes’ and these connections were clearly expressed throughout this project. As well as documenting the people and their connection to the Cardiac Wing through the selfie project, GO Create! has been working towards visually recording the architecture and interiors of the building itself. Built in the 1970s, the Cardiac Wing housed a number of unique spaces, including specialist wards, laboratories, theatres, offices and staff areas. With these spaces now under construction, it is fascinating to see in these photographs where we began and how far we have come. The Medical Illustration team, former Cardiac Wing residents themselves, photographed these spaces and their images will soon be shown alongside the selfie project at www.gosh.nhs.uk/gocreate You can also follow the team on Twitter (@GoCreateGOSH) to get a preview.

Working with artist and photographer in residence Olivia Hemingway, participants experimented with different styles of photography. Drawing on the popular craze, children and young people took ‘selﬁes’ and collaborated with family members and friends to document areas of the hospital that were particularly familiar and poignant to them.

The photographs taken during the selﬁe project are being exhibited on the Cardiac Wing hoardings on Levels 4, 5 and 6. You will be able to access these via the Variety Club Building corridor that previously led to the Cardiac Wing. GO Create! would like to take this opportunity to thank everyone who was involved in recording this period of GOSH history! GO Create! is funded by Great Ormond Street Hospital Children’s Charity.

Collaboration at the heart of our work

How Professor Martin Elliott’s friendship from his days as a junior doctor has helped to create an international cardiac database for the benefit of patients across the world. Over 30 years ago, Professor Martin Elliott, Co-Medical Director at Great Ormond Street Hospital, met Professor Bohdan Maruszewski in Liverpool. Back then they were junior doctors, yet to establish careers as distinguished paediatric cardiac surgeons. Their friendship, built up over three decades, has changed the face of paediatric cardiac surgery, with both men playing an instrumental role in the establishment of a global database used to benchmark the success of operations. “I’ve been interested in using data for comparative outcomes for as long as I can remember,” Professor Elliott explains. “After some initial work in the UK, I transferred the whole database to Bohdan in Warsaw when it was still in its infancy. They had much more flexibility in Poland when it came to semicommercial ventures and it cost a lot less to set up. “It’s grown exponentially and now collects information on every piece of surgery done for congenital heart disease in over 100 countries across five continents.

“There are various beneﬁts of having this amount of data. It enables you to benchmark your results so surgeons know how they’re performing. As well as striving to do their best for the children, people are naturally competitive, so this drags results upwards. Secondly, by putting this information out in the public domain it allows patients and their families to make informed decisions. Finally, it enables governments and hospitals to decide where investments should be made and which cohorts of patients the research should be concentrated on.” An international database isn’t the only fruitful development to spawn from the relationship between Professors Elliott and Maruszewski. The latter has been able to establish a charity attached to his hospital in Warsaw, taking learnings from Great Ormond Street Hospital Children’s Charity. Professor Maruszewski, working with fundraising colleagues, established a television telethon translated as ‘Great Orchestra of Christmas Charity’. The event was a fantastic success and

Profesors Elliott and Maruszewski with Jurek Owsiak, president of The Great Orchestra of Christmas Charity.

raised so much money that funds could be diverted across Poland to 10 cardiac centres. The two professors also regularly visit each other’s countries to give lectures and pass on learnings.

“Across the world, paediatricians want to do better for children. It’s a moral duty to learn from others wherever they’re based...” Staff at the hospital have links with countries around the world and Professor Elliott is no exception. “In addition to my work with Bohdan and Poland, I work very closely with Cincinnati Children’s Hospital Medical Center on quality and safety and the airway work that they do. It’s the only other tracheal service in the world apart from the one I run here. I also work with teams in St Petersburg, Florida and Chicago among others. Sometimes that work can be offering secondary advice via teleconferencing. Only recently I was advising on a patient based in New Zealand.

“International collaboration isn’t always just about improving results either, although that is the heart of our work. For example, we have an interesting relationship with India, where I sent one of my senior registrars for a year’s training in a place that did more than 4,000 paediatric open heart procedures in one hospital – 50 per cent more than all UK hospitals combined. He went there to learn how they run operations in such a systematic way but still get good outcomes in a difﬁcult environment and how they do it for $1,400 a case. There are clearly economic lessons we could learn from India and these cost reductions are very relevant to us as we enter the next decade. “Across the world, paediatricians want to do better for children. It’s a moral duty to learn from others wherever they’re based, but also, as one of the world’s leading hospitals, pass on our knowledge where we can.”

A day in the life of an Occupational Health Nurse

Eunice Hagan is an Occupational Health Nurse at Great Ormond Street Hospital (GOSH). She began working at the hospital after completing her work placement here in June 2009.

First thing “I wake up very early at around 5.30am. I say my prayers and then read a Bible verse for the day before getting ready to leave at 7.15am. I live in South East London, so I use the DLR and underground and then walk to work to arrive by 8.35am. “I don’t have breakfast until 11am but I always start the day with a cup of tea! The ﬁrst thing I do is check what I have scheduled for the day. In the Occupational Health department the day is split into two – we have admin time and then scheduled clinical appointments. The clinic is alternated every day, so I spend half a day on each task. We also have other nurses who are available for walk-ins or phone queries.

“In the clinical appointments I do things like preemployment health interviews and screenings, management referrals and immunisation updates.

During the admin time we assess pre-employment health questionnaires, respond to emails and telephone queries and make GP and other referrals. Each day is different depending on what comes in. I prefer to be busy because time flies!” Key responsibilities “The main role of an Occupational Health Nurse at GOSH is to identify the needs of the staff. There are variations depending on the organisation you work in, but the overall aim is to maintain performance at work. If an employee has a condition or problem that may affect their work, we can help them. Managers refer employees to us, so we make recommendations on how best to assist them and make sure they can still work. “Another part of our role is to prevent injuries and diseases in the workplace using proactive occupational health and safety strategies. For instance, we set up screenings to find out if employees have infections that could be transferred to other staff members, patients or families. Some employees are exposed to other risks – for example, the people who work in the lab are around dangerous gases, so we ensure they have the correct assessments like lung function tests. “Often, employees approach us with non-work related problems, and we can refer them to other teams or advise them to visit a GP and make sure all the support is put in place to keep the employee at work. We aim to improve environmental health, ensuring the wellbeing and safety of staff so that they are fit to deliver quality care to patients and the wider community.”

Eunice prepares to take blood from a GOSH staff member

Highlights “I really like the health surveillance aspect of my role – as the adage goes ‘prevention is better than cure!’ We look to reduce the risk of hazardous exposure as part of health and safety laws. We reassess these services once a year, which helps me keep my skills up-to-date. We do other health surveillance on a day-to-day basis, like skin assessment, but the skills you don’t use for a while you tend to forget. “Experiences are also really diverse – so many new tasks come up and you have to read about them each time. You learn something new every day, which is good because it keeps you on your toes. “Lisa is our Occupational Health Nurse Manager – she started earlier this year – and she wants to help raise the standards of our Occupational Health Service through an accreditation with the Safe Effective Quality Occupational Health Service (SEQOHS). We’re all working hard to follow the standards to achieve that.” Changing perceptions “Many employees come to the department with various ailments, like headaches, dizziness, leg swellings or eye problems. They get disappointed when we tell them we cannot help or if we direct them to a walk-in clinic or GP. We may come across as unhelpful, however, because we’re not doctors, we’re unable to diagnose or prescribe. We support staff where we can.

“An Occupational Health physician comes to the hospital once a week, but he is here to see complex management referral cases rather than staff who are feeling unwell. We do also have a physiotherapist who can help with musculoskeletal problems, and there is a self-referral form on GOSH Web that staff can use in the first instance. “If someone has an undiagnosed condition, the first step is for them to visit their GP.” Final tasks “The clinic finishes at about 3.30–4pm, so we use our last hour to catch up with admin work, send emails and finalise schedules for the next day. We have some things to lock away so I will check that they’re all safely put away. “I leave here about 5.15pm and get the train home. My husband works night shifts, so I take over from him to look after our six-year-old daughter. I help her with her homework and reading, give her a shower, put her to bed and then get her things ready for the next day. “I usually get time to myself at about 9pm, so I put my feet up, listen to the news and finally get to bed about 10.30–11pm. Every day is busy until I go to bed!”

Kieran gets two new ears – made from his own ribs

Kieran shows off his new ears

Nine-year-old Kieran was born with bilateral microtia, which meant that neither of his ears had properly formed. In August, Kieran underwent a double ear reconstruction at Great Ormond Street Hospital (GOSH) and is now the proud owner of two ‘big ears’. Before the procedure, Kieran said he was feeling ‘excited’, adding: “I’ve always wanted big ears, and now I’m ﬁnally going to have them.” As soon as he woke from his operation, his parents David and Louise helped him to take a ‘side selﬁe’ picture of one of his new ears to see the results, to which Kieran responded simply: “Wow.”

GOSH Consultant Plastic and Reconstructive Surgeon, Mr Neil Bulstrode, carried out the sixhour operation on Kieran on 5 August, and is one of only a handful of clinicians worldwide to carry out double ear reconstructions. “Bilateral reconstructions are sometimes done one at a time, but for Kieran we have created

both of his new ears at the same time,” Mr Bulstrode said. “This allows us to ensure the ears are balanced and achieve the best result.” GOSH performs more ear reconstructions than any other hospital in the UK. This includes 35–40 total reconstructions each year, ﬁve of which are bilateral reconstructions (both sides) like Kieran’s. How was it done? The procedure began with Mr Bulstrode harvesting rib cartilage from both sides of Kieran’s chest, which he then carefully carved and shaped into frameworks for Kieran’s new ears. In designing them, he used an outline of mum Louise’s ears as a ‘family template’, to make them as close as possible to the ear shape that Kieran might otherwise have inherited from either of his parents.

The future of ear reconstruction Kieran will have a follow-up operation in six months’ time, which will involve placing a small skin graft behind each ear to help push it out slightly further from Kieran’s head. Doctors and researchers at GOSH and the UCL Institute of Child Health (ICH) also hope they will soon be able to perform ear reconstructions for children like Kieran by growing new ear frameworks and other skeletal structures from a child’s own stem cells. The research at the ICH, funded by Newlife Foundation for Disabled Children, is aiming to allow clinicians at GOSH to use stem cells derived from a child’s own fat to create a new ear, in combination with ‘scaffolds’ that provide the initial support and shape for the ear and are later absorbed.

Mr Bulstrode then grafted the ear frameworks onto either side of Kieran’s head, placing them under pockets of skin that were then sucked down with a vacuum so that the skin conformed to the contours of each new ear. Building conﬁdence Kieran has already undergone a separate series of operations to improve his hearing, and while the ear reconstruction is primarily a cosmetic procedure, Mr Bulstrode said it stood to bring enormous beneﬁts to Kieran.

“It was very important that this was Kieran’s decision, and I think it’s happened at exactly the right time for his development.” “It’s a major operation but it brings a significant improvement in quality of life for children with microtia,” he said. “Their confidence improves exponentially and their performance at school improves. If you can improve a young person’s confidence, you can alter their whole trajectory in life.” Speaking after the procedure, Kieran’s dad David said: “It’s been heart-wrenching for us and we’ve had the moral dilemma all along of whether it’s right to change the features that Kieran was born with. But Kieran has talked about having ear surgery ever since the age of six when he saw a TV programme about it. It was very important that this was Kieran’s decision, and I think it’s happened at exactly the right time for his development.”

Dr Patrizia Ferretti, head of the ICH’s Development and Regeneration Group, who is leading the study, said: “This approach would be far less invasive for a child than the current method of harvesting a child’s rib cartilage. The fact we would be using their own stem cells would also ensure that the new skeletal structures were not rejected by the patient, and would instead grow with the child.”

What is microtia? Microtia literally translated from the Greek means ‘little ear’. It is the medical word to describe a small or absent ear. It is present from birth (congenital) and can appear on its own or alongside other symptoms as part of a syndrome. Microtia can affect one ear only (unilateral) or both ears (bilateral). Around 10 per cent of children with microtia are affected in both ears. Bilateral microtia is rare, affecting just one in 100,000 babies.

I have ectodermal dysplasia

George with his mum

Sixteen-year-old George has ectodermal dysplasia (ED), a rare genetic disorder affecting the development or function of the teeth, hair, nails and sweat glands. He tells Roundabout his story. “I was only very little, maybe two or three years old, when the ﬁrst symptoms of my condition became evident. I was having nosebleeds and my parents kept ﬁnding small clumps of hair in the bath. Within three weeks it all fell out. They took me to my local hospital in Southend-on-Sea before I was referred to Great Ormond Street Hospital (GOSH). It was then that I was diagnosed with ED. “My variety of ED is so rare there are only two people in the whole country who have been diagnosed with it and they don’t yet have a name for it. ED makes a difference to my daily life in a few ways. I have alopecia and my hair hasn’t grown back since it fell out when I was little. I only started to get a few hairs on my arms and legs midway through secondary school, and eyebrows are only a very recent addition. “My body struggles to control its body temperature so I can easily overheat or get too cold. Because of this, migraines or passing out due to dehydration are a very real possibility. It means I have to be prepared for the day. If I left the house in a rush before school without a bottle

of water then I could become ill. Similarly, in the winter I wear a huge number of layers to deal with the intense cold that my body feels. “I also can’t grow regular teeth. When they do come through they tend to be joined together so look like much bigger teeth. I’ve got one or two adult teeth but I won’t get any more now. “My hair, teeth and temperature problems are serious issues but some of the other symptoms can be a bit more left-ﬁeld. For example, in contrast to my hair, which doesn’t really grow, I have unusually quick and strong growing nails. I’m forever cutting them back. If I give them a trim on a Sunday, they’ll need redoing by the middle of the next week. “I’ve been going to GOSH for nearly my whole life. My earliest recollection is of the long train journeys from Southend-on-Sea and then my mum taking me to a museum or gallery afterwards. The hospital has done so much for me. From an early age I developed needle phobia, an acute fear of injections and needles due to the large number

I was receiving. Thanks to counselling and the psychologists at the hospital, I’m starting to deal with this issue. Getting behind-the-scenes tours of the hospital where they do injections has helped normalise it and they’ve taught me methods of dealing with the situation, such as meditation. I’m still nervous about needles but I’ve learnt ways to calm myself down if I get panicked. “The hospital has really helped with my confidence. At primary school I had a few problems, as children sometimes don’t understand how people can be different. However, the team at the hospital have taught me that not everyone will understand and that’s OK. School is so much better now and I’m doing a BTEC in performing arts at my local college. Acting is something I really enjoy and I’ve done a few performances as part of the National Youth Theatre. When I’m acting I’m able to show people that I’m not defined by my condition by transforming myself into different roles. “Now that I’m 16 I’ll soon be transferring from GOSH to Guy’s and St Thomas’. Initially I was very nervous, as I’ve become so familiar with the staff at the hospital. I was worried that the transition would be really difficult. However, I had an introductory meeting at the new hospital last year that has put my mind at ease. “As well as acting I’m an avid reader, particularly crime, drama and fantasy. My favourite author is David Landy who wrote the Skulduggery series, which is set in Ireland and all about magic. I’m also really open to new opportunities. Thanks to Great

Ormond Street Hospital Children’s Charity I had a behind-the-scenes pass at the F1 weekend, which was an amazing experience. “I’ve never known life without ED but I won’t let it rule my life. For example, just because it’s particularly hot or cold I’m not going to let that get in the way of seeing friends or family. In the future I’d love to be a theatre actor like Alex Kingston, who I really admire for her dedication towards the craft of acting. If not, then I’d like to be a drama teacher. Acting has had such a positive inﬂuence on my life and I’d like to pass that on to other people.”

What is ectodermal dysplasia? ED is not a single disorder, but a group of closely related conditions of which more than 150 different syndromes have been identiﬁed. It’s a very rare condition that affects approximately 7,000 people worldwide. ED is caused by altered genes that may be inherited, or normal genes that have become defective (mutated) at the time of conception. Before a developing baby is large enough to be seen, a layer of cells covers the outside of the body. This surface layer of cells is called the ectoderm. From these cells the skin, hair, nails, teeth, nerve cells, sweat glands, parts of the eye and ear, and parts of some other organs develop. Each of these parts of the body is then called an ectodermal structure.

Learnabout Reﬁning our emergency responses

‘Real-life’ patient emergencies are being recreated in a new Great Ormond Street Hospital (GOSH) training centre, to help clinical teams learn and develop. The GOSH Clinical Simulation Centre (CSC) has recently been upgraded to include two new simulation rooms and a dedicated classroom. Now located on Level 4 of the Nurses’ Home, the centre develops tailored, ‘hands-on’ training scenarios for teams using a computerised patient mannequin. Clinical, or ‘high-ﬁdelity’, simulation allows teams to test their clinical and non-technical skills in an environment they ‘believe’ to be real. Staff play their own roles in the training, within their typical team structure, to make it as realistic as possible. Senior staff are also able to monitor performance from the centre’s control room. Dr Richard Paget, Consultant for the Children’s Acute Transport Service (CATS) and Cardiac Intensive Care Unit, who is medical lead for the centre, said: “Teams that take part in these scenarios are able to test skills like leadership and communication, as well as their clinical skills in a crisis. It’s also an opportunity to learn from mistakes that they might make when under stress and in a time-pressured environment.” The aim of the centre is to improve patient outcomes by training staff in a simulated real-life environment.

Evidence suggests this will improve teams’ responses when dealing with critical illness in reality. Senior Staff Nurse Beverley Halverson Steele recently took part in CATS team training at the centre, in which they had to intubate a deteriorating patient mannequin in a helicopter simulation. She said: “I actually had a dry mouth from anxiety after the training, it was so realistic. You can give people hundreds of verbal examples of retrievals and what could go wrong, but physically being in that cold, dark helicopter environment really prepares you for a similar situation in real life.” The CSC team also has an in-situ trolley, so it can run shorter training sessions with teams by bringing the patient mannequin out onto the wards. This helps reveal any latent errors within the ward environment, such as staff not knowing where emergency equipment is kept. The team plans to mix in-situ and centre training to help further improve the GOSH patient experience, as well as opening it out more widely to external health professionals. For more information about how to include the CSC as part of your team training, please email simulation@gosh.nhs.uk or visit goshgold.org/csc

Evidencing and publishing clinical outcomes Great Ormond Street Hospital (GOSH) always aims to provide the best possible care. To help us monitor the quality of our services, we measure what we do and how we do it. The resulting clinical outcomes are broadly agreed, measurable changes in health or quality of life that result from our care. By constantly reviewing our clinical outcomes, we can establish standards to measure ourselves against, helping us to continuously improve all aspects of our practice.

Quality Report 2013/14

Recording and publishing outcomes data plays a crucial role in improving clinical practice and informing service improvements at GOSH, as well as other healthcare organisations across the world. By comparing our outcomes with other hospitals, we can develop relationships with other paediatric centres of excellence and build an evidence base to determine how effective our treatments are. As a renowned centre in the treatment of rare and complex childhood disease, GOSH has a range of truly world-class clinical outcomes. Yet, we currently don’t publish them all in one place. Some are reported to registries, some to commissioners, and some we collect but haven’t yet reported formally. We want to demonstrate our clinical outcomes in a way that is accessible and understandable to the public. We already have 48 outcomes published to the Trust website across 24 specialties. These represent around 20 per cent of the currently identiﬁed outcome measures within the Trust. We will continue to grow the presence of our outcomes data on the website. However, as announced in the Quality Report 2013/14 (available at gosh.nhs.uk/qualityreport2014), we will also undertake a speciﬁc project for 2014/15 to identify

and publish as many of our world-class outcomes as possible. Progress will be reported in next year’s Quality Report. Our published outcomes can be viewed on the Trust website at gosh.nhs.uk/outcomes The list of clinical outcomes is currently being prepared. If you are aware of outcomes you think should be on the list, please get in touch with Meredith Mora, Clinical Outcomes Development Lead, at meredith.mora@gosh.nhs.uk

GOSH noticeboard Annual General Meeting and Annual Members’ Meeting Foundation Trust staff members are invited to the Annual General Meeting (AGM) and Annual Members’ Meeting. 11 SEPTEMBER

It also includes a presentation from Professor Andrew Taylor, Divisional Director for Cardiorespiratory Services on Real-time reporting of surgical results – transparency in practice

Registration from 5pm 5.30–6.30pm followed by a reception The Kennedy Lecture Theatre UCL Institute of Child Health, 30 Guilford Street, London WC1N 1EH

The purpose of the meeting is to receive the Annual Report and Accounts and hear from the directors on the performance of the Trust in 2013/14. The Members’ Council will present its annual membership report and you can also hear about the forthcoming Members’ Council elections.

Annual Report and Accounts 2013/14

GEMS awards winners: July

JULY

Individual award: Alan Bennett, Head of Electronics, Biomedical Engineering

Nominate someone for a GEMS award!

If you think an individual or team should get wider recognition, drop an email to staff.recognition@gosh.nhs.uk providing as much information as you can about why they’re a Great Ormond Street Hospital GEM.

Our Always Values 16

Team award: Health Records department

We’ve been busy over the summer planning the next steps in our roll-out of Our Always Values. Look out for the October edition of Roundabout for more information.

Free ﬁlm show 8 SEPTEMBER

Rio 2 (U)

Cuban Fury (15)

6.15pm

8pm

t u o b a d n a Out Listen

13–14 SEPTEMBER

OnBlackheath Prices

Blackheath

See

vary

FROM 13 SEPTEMBER

Ming: 50 Years that Changed China Ground Floor Lecture Theatre, Weston House

Multi-faith festivals

British Museum

Eat and drink

£16.50

EVERY WEEKEND

Real Food Market

25 SEPTEMBER Navaratri (start)

Southbank Centre

Free

Hindu

25 SEPTEMBER Rosh Hashanah

28 SEPTEMBER

(start of Jewish New Year)

Jewish

Centre for Research into Rare Disease in Children – community exhibition We are holding a community exhibition to showcase plans for our new paediatric research and treatment centre as submitted for planning permission. Come along to learn more about how the building will be used and see the architects’ latest images and 3D model.

15 SEPTEMBER

3–7.30pm Guide Hall, Coram’s Fields For more information visit gosh.nhs.uk/CRRDC-consultation or email redevelopment.feedback@gosh.nhs.uk

Pearly Kings and Queens Harvest Festival 2014

Free

Guildhall Yard, St Paul’s

Watch

UNTIL END SEPTEMBER

The Luna Open Air Cinema

£13.50

Various locations in London

Read The Fault in Our Stars by John Green “A novel of life and death and the people caught in between. You laugh, you cry, and then you come back for more.” Markus Zusak, author of The Book Thief

Staff Members’ Council elections – so you’re thinking of standing for election?

When Great Ormond Street Hospital gained Foundation Trust status in 2012 it became a membership organisation with a membership body. This is a group of people made up of staff, patients and their families, partner organisations and members of the public. As a Foundation Trust we have the freedom to develop our services. In return, we are accountable to the communities we serve. An essential part of this is listening and responding to the opinions of our members. Through the members’ governing body – the Members’ Council – all members have the chance to have a say in how the hospital is run. Our journey so far as a Foundation Trust has seen the hospital beneﬁtting from the unique perspective of the patient, parent, carer and staff experience, which has helped the hospital to develop and improve services. As a staff member you play such an integral role in the organisation so your voice needs to be heard. Staff members are represented on the Members’ Council by their staff council members.

Staff councillors are responsible for feeding back to the Trust, via the council, the views and ideas of Trust staff members, to inform the development of the organisation’s strategies and plans. Staff councillors have the opportunity at Members’ Council meetings to ask questions on behalf of staff on the key issues affecting them. On 19 November 2014 the Trust will issue its formal notice of election. This enables all staff members to nominate themselves as a staff councillor. The nominations deadline is 17 December 2014 and there are five seats on the council for staff members. For more information on the role of a councillor and the election process, please go to GOSH Web, where you’ll find ‘staff elections’ under the Corporate-Chief Executive’s Office section. If you would like to discuss the role in more detail, please contact Deirdre Leyden, Membership and Governance Manager, on ext 5668 or at deirdre.leyden@gosh.nhs.uk

In brief

Last word

New ward videos for patients and families

Healthy eating

The Digital team has been working hard with patients and staff to produce a series of videos for the wards at Great Ormond Street Hospital (GOSH).

We all like to treat ourselves to a couple of biscuits or a takeaway once in a while, but it can be very easy to overindulge! Specialist Dietitian Victoria Kearns tells us what we should be doing to ensure we’re maintaining a healthy diet. Always eat breakfast

Each 60-second ﬁlm features a patient narrator and offers an informative and reassuring snapshot of the ward for parents and visitors. The videos give an overview of some of the key facilities on the ward, and introduce viewers to various members of staff. You can ﬁnd the current videos at the links below. The team is also rolling out the project to other wards across the hospital.

Skipping breakfast is one of the worst ways to start your day. A healthy breakfast kick-starts your metabolism and should give you the energy you need to get through the morning. Try eating wholemeal cereal with fruit sliced over the top. Aim to eat ﬁve a day It is recommended that we eat at least ﬁve portions of different fruits and vegetables every day. A portion is equal to roughly one handful, or 80g. That’s the equivalent of two plums, seven strawberries or four heaped tablespoons of green beans. Keep your diet balanced

Eagle: gosh.nhs.uk/eagle

Too much of anything can be bad for you, so you need to eat a range of foods, including:

Elephant: gosh.nhs.uk/elephant

• plenty of fruit and vegetables

Kingﬁsher: gosh.nhs.uk/kingﬁsher

• plenty of starchy foods, such as bread, rice, potatoes and pasta

Koala: gosh.nhs.uk/koala Lion: gosh.nhs.uk/lion Penguin: gosh.nhs.uk/penguin Peter Pan: gosh.nhs.uk/peterpan Pufﬁn: gosh.nhs.uk/pufﬁn

• some meat, ﬁsh, eggs, beans and other non-dairy sources of protein • some milk and dairy foods • just a small amount of food and drinks that are high in fat and/or sugar

Rainforest: gosh.nhs.uk/rainforest Safari: gosh.nhs.uk/safari

Cut down on saturated fat, sugar and salt

Sky: gosh.nhs.uk/sky

Saturated fat, which is found in cheese, cakes, biscuits and butter, can increase the amount of cholesterol in your blood, thereby increasing your risk of developing heart disease. High amounts of fat and sugar can contribute to weight gain and too much sugar can cause tooth decay. Too much salt can raise your blood pressure and could increase your chances of developing heart disease.

Squirrel: gosh.nhs.uk/squirrel Urodynamics: gosh.nhs. uk/urodynamics Walrus: gosh.nhs.uk/walrus Thank you to all the staff and patients who have taken part so far. For more information about the ward video project, or to share any feedback, please email the Digital team at webcontent@gosh.org The ward videos are funded by Great Ormond Street Hospital Children’s Charity.

Drink plenty of ﬂuids Women should drink about 1.6L and men should drink about 2L of ﬂuids per day to avoid dehydration. Stay active It’s not enough to just eat right. We all have to stay active to maintain a healthy weight – but that doesn’t mean you need to spend hours at the gym every day! Find ways to incorporate exercise into your daily routine, for example, using the stairs instead of taking the lift.

Spooky night time

cycle in the city

31 October 2014 Hop on your bike and be a hero for the patients at Great Ormond Street Hospital by taking part in the Moonriders Halloween 100km cycle ride.

Sign u

now!

nriders sh.org/moo o .g w w w it Vis 9 3164 Call 020 723 .org nges@gosh Email challe

Great Ormond Street Hospital Childrenâ&#x20AC;&#x2122;s Charity. Registered charity no. 235825.