March 2014

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

March 2014

Organ donation An in-depth look at the complex issues surrounding paediatric organ donation, page 12

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Welcome from the Interim Chief Executive

Julian Nettel Welcome to this month’s edition of Roundabout.

On page 17, we explain how Great Ormond Street Hospital is working with centres around the world to establish common ways of measuring what excellent care looks like across a number of clinical specialties, and whether we (or any of our peers) are achieving it.

This is important work. We are already a national leader in much of what we do and we provide a unique range of specialist services to the NHS population. In order to create the drive for improvement, we have to compare ourselves with similar specialist hospitals. For us, many of these peer organisations are the major centres in North America.

You make us what we are.

We are developing Our Commitment to our staff, patients and their families and want you to tell us what values and behaviours should guide everything we do, every day.

Staff: please visit the Our Commitment page of GOSHweb.

Patients and families: please complete a survey online at gosh.nhs.uk/about-us/values Or pick up a copy of the survey from PALS at main reception.

This benchmarking project is only part of the work to push us to become better. Another stream of work that is becoming increasingly important is around providing more effective care and using our resources more efficiently. We cannot aspire to be world-class if we do not examine how we organise ourselves and use our resources to the maximum benefit of our patients. Given the financial pressures that we and the rest of the NHS now face, this work has become more pressing and important.

However, even if we had no financial restrictions, it should be part of what we all do on a continuous basis. This work is gathering momentum and I will be writing regular blogs on our progress.

Contents Regulars In the news

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Word on the tweet

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GO Create!

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Learnabout

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Noticeboard

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­Features Back to normality After George experienced numerous problems and a fast-growing tumour, doctors discovered the cause to be a rare immune deficiency

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A day in the life Find out about a typical day for a female Muslim chaplain at Great Ormond Street Hospital (GOSH)

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The greatest gift of all 12 An in-depth look at the complex issues surrounding paediatric organ donation and how GOSH is leading the way on a long-term alternative Life Study Find out how the largest UK birth cohort study to date will help us understand lives now and for the future

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The copy deadline for the April edition is Monday 10 March.

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

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GO Create! roundup Main reception artwork More than 100 patients took part in workshops to create an artwork for the new hospital main entrance at Great Ormond Street Hospital (GOSH), with many more taking part virtually through an online downloadable worksheet.

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

Everyone at Great Ormond Street Hospital NICU are awesome. If it wasn’t for them our Molly wouldn’t be alive.

In the news

Patient Maya, who received a kidney transplant

Great Ormond Street Hospital (GOSH) can now transplant kidneys from donors whose blood groups are incompatible thanks to a new method that strips a patient’s blood of antibodies. The procedure, reported in the London Evening Standard, means that some parents who thought they were unable to donate an organ are now able to donate their kidney to their child. GOSH patient Maya received a new kidney from her father, Marek, last year.

A new BBC2 series, Children’s Emergency Rescue, follows a team of doctors and nurses dedicated to transporting some of the UK’s sickest children and infants to expert medical care. In the first episode, an RAF rescue helicopter raced 13-year-old Chance 200 miles from Leeds to London in time for a life-saving heart transplant at GOSH. Mr Mazzy Kanani, a GOSH surgeon on the operating team, said that the operation went well.

The parents of 16-month-old Margot Martini, who is currently being treated at GOSH for leukaemia, launched an appeal for blood stem cell donors to help their daughter and other patients at GOSH. Their appeal was covered by ITV News and BBC News London, and featured in The Daily Telegraph and Sunday Express.

I was in the hospital at the age of three with two holes in my heart. I want to say thank you to the doctors and nurses who helped me. I am now 35 and I have a child who is 12. I am blessed to be alive. @GreatOrmondSt Amazing hospital and my boy (cardiac patient) can’t thank your team enough.

In the last fortnight we have seen the very best compassionate care the NHS has to offer at West Middlesex and @GreatOrmondSt hospitals #thankyou @GreatOrmondSt just had two days down at GOSH with laser team, fantastic as always. Took great care of my 12-year-old. Thank you x

GOSH epilepsy patient Finlay Ritchie received a hemispherotomy when he was just 19 weeks old, in order to disconnect the two halves of his brain so that his seizures could not spread. Consultant Paediatric Neurologist Sophia Varadkar said in a report by BBC News that the procedure would give Finlay’s brain the chance to develop.

I had the pleasure of working at GOSH with Marc de Leval about a year after qualifying as an Operating Department Assistant. The experience defined my career and future. #GOSHistory

The Kiss it Better campaign, launched by Carmel Allen, former beauty editor and mother of GOSH patient Josephine, has now raised more than £800,000 for children’s cancer research and is celebrating its 10th anniversary this year. Carmel and Josephine’s story was reported in national newspapers The Mail on Sunday and Daily Express.

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

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Each participant painted a fish that will be gathered together to create a huge sea scene. The fish represent the number and diversity of our patients.

Come and have a look when the main entrance opens in the spring and see if you can spot them all!

The Foundling Museum GO Create! has started an exciting new partnership with the Foundling Museum. As well as Culture Club visits and tours, we are working together on a creative art project with patients.

This month, artists will run workshops in the school and outpatient areas making rosettes that are similar to old tokens found in the Foundling Museum collection. Participants will learn about the history of the Foundling Hospital and the Foundling Museum, and be invited to share their ideas for messages written on the rosettes.

They will create two rosettes – one to take home, and one that will go towards a wall of rosettes that will be exhibited at the Foundling Museum in a special exhibition.

The rosettes will also be shown on the museum’s website and all participants will be invited to visit the exhibition when it opens later in the spring.

GO Create! is the arts and humanities programme at GOSH. We aim to make a positive contribution to the hospital experience and environment through workshops, performances and creative projects.

For more information, please see www.gosh.nhs.uk/gocreate or follow us on Twitter @gocreateGOSH GO Create! is funded by Great Ormond Street Hospital Children’s Charity.

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Back to normality After George experienced bowel, bladder and kidney problems, then a fastgrowing tumour, doctors discovered the cause to be a rare immune deficiency...

For his first few years of life, George was a healthy little boy with no problems other than slight asthma.

Then in 2011, when he was four, he started having bouts of sickness and stomach cramps. “He would perk up for a while but then it would happen again,” says mum Jo. Tests at his local hospital only showed he was anaemic, but Jo says: “You know when your own child is not right.”

After the pattern of sickness continued for about a year, more tests were done in July 2012. A doctor felt a mass in George’s stomach, thought to be an abscess, and referred him to Great Ormond Street Hospital (GOSH). Doctors at GOSH then found that George had a fistula (an abnormal passageway linking two organs) between his bowel and bladder, and that the mass was blocking a kidney, so he was fitted with an ileostomy bag and catheters. Jo, pregnant at the time, says: “That was all exactly a week before I was due to have a C-section.” Just four days later, George was diagnosed with fast-growing B-cell lymphoma (cancer of the B-cells) in his abdomen.

GOSH organised for Jo to have her baby at a nearby hospital while George was having procedures to prepare him for chemotherapy. Meanwhile, the doctors knew that George’s tumour could not have been present as far back as 2011. Further tests revealed he had a rare condition called XLP immune deficiency – and that it was congenital.

“Until you’ve been in this situation, you don’t realise just how fantastic the hospital is – the consultants, nurses... everybody.”

“It means his body doesn’t produce the cells that help it fight cancer,” says Jo. “We were told that he would keep getting tumours unless he had a bone marrow transplant.” Only males develop the condition.

Jo says: “Luckily, my baby, Ella, was a girl.” The chemo went on until December 2012 and the family was looking forward to having George home for Christmas, but he developed mucositis, an inflammation of the mucous membranes lining the digestive tract. Jo says: “I stayed overnight in his room at GOSH on Christmas Eve with Ella, then George’s older sister Sophie and my husband came with presents at 5am so we were there when George woke up.

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He wasn’t 100 per cent but we were able to be together and that was the main thing.” George had his bone marrow transplant in January 2013.

“I was really amazed,” says Jo. “The donor gave their blood and then George got hooked up to have it intravenously. That was actually the easy part!” After three months in isolation, George went home in April 2013.

“We were excited to have him back,” says Jo, “but we felt nervous and daunted.” Their fears became a reality when George was rushed to hospital a few weeks later, suffering from fits – a reaction to his antirejection medication. He was prescribed antiseizure drugs and in August 2013, the family were finally able to have their first holiday.

“It’s nice to be back to normality,” says Jo. “He has so much more energy now.” The family have learnt to be prepared for whatever may happen, but Jo says: “Until you’ve been in this situation, you don’t realise just how fantastic the hospital is – the consultants, nurses... everybody.”

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A day in the life of a Chaplain Fatima Kassam was the first female Muslim chaplain appointed at Great Ormond Street Hospital (GOSH) and has worked with the Chaplaincy and Spiritual Care team since 2009.

Fatima works at GOSH two days a week and is also a community nurse in Hillingdon.

Daily routine “I wake up at six in the morning, do my reflective practice at home and I pray. I like to have fresh juice and cereal for breakfast. I come to GOSH by train to Euston Station, and then I walk. It’s only 13 minutes because I live in Harrow, so it’s a short commute and very easy. I’m lucky.

“I officially start at 10am, but if I’m required to be here earlier, I’ll come and adjust my day depending on the needs of the patients.

“On Tuesdays I have lots of meetings to go to, so my time is quite tight. I have an hour free that day to do ward rounds. On a Thursday I just take it as it comes.

“We work closely with the International and Private Patients service (IPP) and often include the IPP on my ward rounds. I go and say hello whenever I can. I speak Kiswahili, Luganda, Urdu, Kutchi, Gujurati and Hindi. It’s amazing how it is such a help, because a lot of parents don’t speak English, as they come from abroad.

“Part of my role is to do faith-based and bereavement training for staff. Bereavement teaching is often for when new people start at the Trust, and we’ve done play teaching before, where we train staff in how Islam views play. I also organise events for the religious festivals in the Islamic calendar, including the Eids, Ramadan and the Prophet’s birthday.”

Offering support “We offer spiritual care to parents, patients, siblings, family members and we also support staff as well. It can range from just sitting there and saying nothing to praying for them or with them too.

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“When a patient is admitted to the hospital they have a questionnaire that they fill out, so I know if they are Muslim. Sometimes I will also know from their name and I will go and introduce myself that way. We’re very involved with the Psychosocial team, so they will often refer patients to us. We also hear from other chaplaincy colleagues. They will say: ‘There’s a really nice mum here who would love to see you,’ and we do the same in return for other faiths.

“We have a lot of contact with staff, too. For example, I spend a lot of time with the MITIE staff, who provide domestic cleaning services for the hospital. I often meet them in the corridor and speak to them.”

A multi-faith team “We work closely with every faith, so we have chaplains of many denominations: Greek Orthodox, Muslim, Anglican, Roman Catholic, among others. Everyone is working towards one goal: supporting the patients and their families.

“Everyone works together, no matter what their background may be – it’s really nice. My colleagues will get on board when we’re doing tasks, for example during an Eid festival, and they are always asking us what they can do to help. It’s a great team effort.

“I am always at the hospital on Christmas Day. My boss and I go up to the wards to wish everyone a merry Christmas. It’s something that’s very special for me.”

Achievements “When I first came to GOSH it was very difficult – the word chaplain was something I couldn’t explain because of the language difficulty – there is no word in the Islamic faith for a chaplain, or a female chaplain. Now there’s so much awareness and demand and I’m proud of the Muslim chaplaincy because it’s really grown. There are three of us now so we can share the workload. It’s lovely to see.”

Challenges of the role “A lot of the time there are differences between religion and culture, and we don’t know what is allowed.

For example, with organ donation, some schools of thought don’t allow it and some do, so if we need further guidance we can ask our male Muslim Chaplain, Abu Saheed, who is Chairman of the Islamic Sharia (jurisprudence) Council of the UK, for advice.

“Funerals can also be difficult. The most important thing about Muslim death is that burial should take place as soon as possible, and we find that a struggle. I often get involved with funerals to help arrange care. For example, recently there was a lady who was here for eight months and lost her baby. She didn’t want to take the baby’s

body home on her own, and because we’d formed a bond during that time I went with her to settle her into her home and help arrange the funeral.”

“I love everything about my job. It’s a great privilege to be in a place like GOSH, where you are such a support for parents who are often at such a low point in their lives.”

Finishing work “At the end of the day we have admin work to finish up. I’ll see if anybody else in the team needs support or help with visits or anything like that, and then go home. At the moment, outside of work, my focus is on the Iceland trek in July for Great Ormond Street Hospital Children’s Charity. A lot of my time is spent towards achieving this goal.

“I love everything about my job. It’s a great privilege to be in a place like GOSH, where you are such a support for parents who are often at such a low point in their lives.

Being a nurse in Hillingdon and a chaplain at GOSH is also a lovely combination. I don’t bring the nursing here, but I do take the chaplaincy with me to that role.”

The multi-faith Chaplaincy and Spiritual Care service is available to all staff, families and patients at the hospital. They are based on Level 2 of the Variety Club Building.

The service is funded by Great Ormond Street Hospital Children’s Charity.

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New monthly staff awards

Redevelopment update Great Ormond Street Hospital has been working hard on its ambitious redevelopment programme. Clinical Planner Jo Trussler liaises with staff, patients, families and carers to ensure new facilities meet their needs. She tells us what’s happening in the hospital during March and April 2014.

There will be lots of activity to prepare for major building work this summer to transform the old Cardiac Wing into the Premier Inn Clinical Building.

This will complete the Mittal Children’s Medical Centre in 2017, providing world-class facilities for our inpatients.

The current stage of the redevelopment programme, known as ‘enabling works’, includes vacating buildings and relocating wards to alternative areas across the hospital campus.

This work involves careful planning to minimise disruption. We will be in contact with everyone, updating our internet and intranet pages to keep you all informed.

Relocating services can be really challenging, but it has given us an opportunity to improve and modernise, and we will soon see the benefits of this difficult work. Thanks to everyone who has helped to make these changes happen.

A better experience for patients: the Procedures Pathway Floor The Procedures Pathway Floor (PPF) runs across Level 3 of the hospital. It has been designed to bring the Same Day Admissions Unit closer to the places that patients are most likely to be sent for treatment. From there, patients will be sent to recovery in the Post Anaesthetic Care Unit, transferred to a ward, or discharged home.

The floor will become a controlled access area to allow patients to travel to theatre without encountering the general ‘traffic’ along the hospital street. The opening of Puffin Ward (Same Day Admissions Unit) in March 2014 and Woodpecker Ward (Angio and Post Anaesthetic Care Unit) in May 2014 is the first stage of implementation of the PPF. The full benefits of its design will come to fruition when the Premier Inn Clinical Building opens in 2017.

Making an entrance Building work on Woodpecker Ward made it necessary for us to close the main entrance, but

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The Great Ormond Street Hospital Exceptional Members of Staff (GEMS) awards were launched in January to celebrate individuals and teams in the Trust.

The first month saw more than 60 nominations from across the hospital.

Ali Mohammed, Director of HR and Organisational Development and chair of the judging panel, said that the panel were deeply impressed by the professionalism, commitment and enthusiasm that shone through all the nominations, and picking the winners was no easy task.

Individual award

Team award

The individual award went to Keylla Guy, Domestic in the MRI department. Keylla was nominated by many people in her team, who all talked about her dedication, hard work, boundless good humour and willingness to go over and above what is required in her role to help out the team.

The team award went to the Floor Manager team. A number of individuals, including the team as a whole, received nominations. Overwhelmingly, they were described as a very high-performing and professional team, who go the extra mile to make sure their own departments all run smoothly, and they support each other to deliver a seamless service across the Trust – a model of good team working.

Cara Ellerker, a Nursery Nurse in the Staff Nursery, and Alanna Smith, Staff Development Manager, were worthy runners up.

Artist’s impression of the Mittal Children’s Medical Centre

The two runners up were Bear Ward, and Robin and Fox Wards with Mary Foo Caballero, for all continuing to provide excellent care in challenging circumstances.

it also gave us the perfect opportunity to improve this space. The new front reception area opens in April 2014, providing a brighter and friendlier space designed to appeal to children and young people.

It will house interactive wayfinding kiosks and new facilities for the Patient Advice and Liaison Service, Accommodation Service and Fares Reimbursement.

Other new facilities coming soon A new Doctors’ Mess will open shortly and a new Shabbos Room (where members of the Orthodox Jewish faith can observe the Sabbath, particularly in regards to preparing food) will open on Level 1 of the Southwood Building in April, replacing the current facility in the Cardiac Wing.

For more information about hospital redevelopment, please visit www.gosh.org/redevelopment, GOSHweb, or contact the Redevelopment team.

Phase 2 of the hospital redevelopment is funded

by Great Ormond Street Hospital Children’s Charity and the Department of Health.

Look out for future GEMS monthly award winners in the Noticeboard pages of Roundabout. Monthly winners will be entered into the annual staff awards. There will be more on these awards in future editions of Roundabout.

To nominate an individual or team who you believe should get wider recognition, please email staffrecognition@gosh.nhs.uk

The Great Ormond Street Hospital Exceptional Members of Staff awards are funded by Great Ormond Street Hospital Children’s Charity.

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The greatest gift of all We take an in-depth look at the complex issues surrounding paediatric organ donation and how Great Ormond Street Hospital (GOSH) is leading the way on a long-term alternative.

There’s a famous Mark Twain quote that runs: “Facts are stubborn things, but statistics are pliable.” Yet there’s no manipulating the numbers that matter when it comes to organ donation and transplants. One in three children on the transplant list will die waiting for an organ. Few facts are more stubborn.

But at GOSH, the donation and transplant team don’t talk of doom and gloom. Rather, they discuss the bravery of both the parents who allow their children’s organs to be donated, and the gratitude of the recipients. They describe new ways to increase the numbers of organs donated, and to keep more children alive until that happens. They reflect on the many questions that this life-saving – and relatively recent – treatment throws up. And they point out another statistic: the organs from one child can save up to nine lives.

“It’s difficult to talk about death, particularly the death of a loved one,” says Angie Scales, Specialist Nurse for Organ Donation. “I find it hard myself, and I’m very

Angie Scales, Specialist Nurse for Organ Donation

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It’s the job of Dr Fenton and his team to assess these patients. The decision to offer a transplant is always based on a balance between risk and the improvement in quality of life – it is never made unilaterally and is always part of a team approach that involves the patient’s family. And it poses some very hard questions. Having a transplant can transform a child’s quality of life, but the procedure itself might be very risky. This makes it difficult for the family to decide what to do and the team help with that decision.

used to it. But we need to take away that taboo. We need to increase awareness of organ donation.”

It’s been 25 years since Paediatric Cardiologists Dr Philip Rees and Dr Bruce Whitehead, and Paediatric Cardiothoracic Surgeon Professor Marc de Leval set up the UK’s cardiothoracic transplant programme. Now GOSH is one of just two paediatric transplant centres in the UK, covering the south of England, while Freeman Hospital in Newcastle covers the north. The hospital conducts more paediatric kidney transplants than any other centre in the UK and is one of the largest centres for children’s heart transplants in the world.

Organ transplants are usually portrayed as fastmoving events, and certainly once a suitable organ is found for a recipient, teams snap into action. But the process starts long before a patient is even put on the list. The first question, says Consultant Paediatric Cardiologist Dr Matthew Fenton, is how his team can best help a sick child.

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“There are two broad groups of children,” he explains. “First, those who have heart muscle problems, where the heart doesn’t pump very well. We don’t often know why for sure but sometimes there is a genetic or familial reason. The second group have structural heart disease, congenital problems that are usually present at birth. The majority of babies who we see with structural problems have had conventional surgical procedures, and often they don’t need a transplant.

Some of the children with structural heart problems will be referred for a heart transplant because they have no surgical repair option open to them and others will have had surgery that hasn’t solved the problem.”

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“The decision to transplant is based on whether a child is sick enough to warrant taking on the risks,” says Dr Fenton. “The major limitation to helping everybody is the shortage of suitable donors. A heart transplant can offer a fantastic quality of life for the sickest children with heart problems.

“The most important part of my job is to enable every family where donation is a possibility to have that choice.”

“It is disappointing when we can’t help, either because a donor doesn’t come along or a child is so sick that they are not likely to get through the transplant operation. If more donors were available, it is likely that more children would be given the chance at this life-enhancing treatment.”

The other side of the transplant process is just as delicate. There can be fewer harder questions than the one Angie Scales has to ask. It is her role to approach

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your child’s organs?’ But there’s a slow way of asking.

We have many conversations with the families before we even bring up end of life. We introduce difficult situations, the fact that things aren’t going well and that a child’s death is a possibility. For many years, people used to say: ‘Don’t stress the family any more, it’s already a bad time, it’s not appropriate.’

And all those things people did for good reasons. But it prevented parents from being given the chance to donate organs.”

Dr Matthew Fenton, Consultant Paediatric Cardiologist

The Berlin Heart and other breakthroughs

“It’s always a balance,” he says. “The very skilled senior nurses never just ask: ‘Would you like to donate

alive while they wait for a donor heart to become available. The machine effectively takes over from the heart, helping to pump blood around the child’s body, and allows the child to move around without being confined to a bed.

In 2012, Bellah-Rae (pictured left) broke records by being kept alive for 273 days by a Berlin Heart. Bellah-Rae, who was diagnosed with dilated cardiomyopathy, later underwent a successful heart transplant at Great Ormond Street Hospital.

One of the greatest developments of the hospital’s 500 heart and lung transplants has undoubtedly been the advent of the Berlin Heart in 2004, which keeps children

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During the same year, four-yearold Mason also entered the record books by becoming the smallest person ever to undergo a double

lung transplant in the UK. The youngster from Warwickshire was just three-foot tall when he received the new lungs measuring 11cm in height and weighing 140g each.

In 2009, premature baby Sarah also broke new ground after having a heart transplant at the age of just 23 days – making her the youngest surviving heart transplant patient in the UK at the time (by age at transplant).

There’s a growing pressure for more to be done on a national scale to help increase donation rates, such as the soft opt-out system recently passed by the Welsh Assembly, meaning that consent for donation is assumed unless a person has stated a wish to opt out. But the future of organ donation is not all about organs. It’s increasingly about technology.

Artificial hearts (known as Berlin Hearts) can be used to support a child’s weak or damaged heart

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Dr Joe Brierley, Consultant in Paediatric and Neonatal Intensive Care

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Specialist nurses like Angie are a key part of increasing donations of children’s organs. The consent rate among the families of children is 44 per cent, while the adult rate is significantly higher at 59 per cent.

Dr Joe Brierley, Consultant in Paediatric and Neonatal Intensive Care at the hospital, is a Clinical Lead for Organ Donation and National Lead for Paediatric Organ Donation. He represents paediatrics on the National Organ Donation Committee. A key factor, he says, is to ensure that every parent with a child likely to die is asked if they want to donate their child’s organs.

“For many years people used to say: ‘Don’t stress the family any more, it’s already a bad time, it’s not appropriate.’ And all those things people did for good reasons. But it prevented parents from being given the chance to donate organs.”

“We have been proactive in improving the chances of receiving a suitable donor organ for the sickest children, either by supporting them with mechanical hearts or performing a heart transplant across blood groups,” says Dr Fenton.

“This was previously thought to be impossible but has now become routine. More than 60 children have been bridged to a heart transplant with a Berlin Heart, giving them the chance to stay healthy while waiting for a transplant. We need to be at the forefront of that kind of work. We need the ability to push things forward. It’s going to be hard and expensive, but there is masses to be done.”

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“An important part of my job is to enable every family where donation is a possibility to have that choice,” she says. “I work with families and clinicians right from the point when treatment is deemed to be futile – when the child is going to die and there is no other outcome. I speak to the family about options around donation, and if they wish to proceed then I guide them through that whole process, from consent to offering the organs to the transplant centre, through to theatre and then supporting the family afterwards.”

while they wait for a transplant. Stem cells and their ability to regenerate could be another way forward.

But one thing’s for sure: those who are involved in organ donation – whether it’s helping parents of donors, keeping future recipients alive, or finding new ways to make it more efficient – will not let that onein-three statistic stand.

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parents to see if they would consider donating their child’s organs.

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Learnabout Black History Month celebrations In October, the Grow Network organised a special event to celebrate Black History Month, and to recognise the achievements of inspirational figures and leaders from black and other ethnic backgrounds.

Here, Staff Development Manager, Alanna Smith, reflects on the day.

“As this was the first ever event of this nature to be hosted at Great Ormond Street Hospital (GOSH), excitement and expectations were high. The morning programme opened in The Lagoon restaurant with the Rye String Ensemble, a quartet of year 10 teenagers from Peckham who performed to the delight of staff, patients and their families throughout the day. There was also a display of captivating and inspiring artwork courtesy of children who are inpatients at GOSH. “The afternoon programme included insightful and motivational speeches from former Chief Executive Jan Filochowski, Director of Human Resources and Organisational Development Ali Mohammed, Head of Workforce Planning and Development Helen Cooke, and guest speaker Mrs Diedre Mills, who is the Deputy High Commissioner for Jamaica. Mrs Mills talked about what drove her career and the journey to becoming a key figure in managing the relations of more than 800,000 Jamaicans in the UK. There was also live singing from Thea and Kingsley Wray, and poetry presented by Olivea Ebanks from the Judicial College.

“The event was a huge success, inspiring staff, patients and their families to think about their goals and how to overcome challenges in order to achieve them. One of the attendees described the event as ‘educational, inspirational and inclusive’.

“A huge thank you to all those involved in making the Grow Network Black History Month event a great success.”

For more information about the Grow Network, please visit the GOSHweb intranet pages and select Staff, HR, Equality and Diversity. Alternatively, you can email grow.network@gosh.nhs.uk

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What is the Grow Network?

Grow is a support network for people at Great Ormond Street Hospital who are from ethnic minorities. It aims to empower staff to reach their full potential through training and motivational seminars, mentorship schemes, networking opportunities and drop-in surgeries.

How good are we? International benchmarking for improvement In 2012, Great Ormond Street Hospital (GOSH) began a project to establish agreed common measures across international paediatric centres of excellence. Common measures of treatment effectiveness will help us to compare ourselves internationally and improve quality as a result.

international agreement on at least one measure – and some specialties may achieve agreement on as many as five outcome measures. Despite the challenge of building consensus across different health economies and cultures, the enthusiasm of participants has been encouraging and the power of collaboration is evident.

How? Based on our clinical teams’ recommendations, we contacted 27 paediatric centres of excellence around the world. Sixteen centres (see below) confirmed their interest in participating. We sent a list of our measures and definitions from the following specialties: • cleft • haematology/oncology • haemophilia • interventional radiology • neurosurgery • urology

Our work has recently captured the interest of the International Consortium for Health Outcomes Measurement (ICHOM). ICHOM was formed two years ago by Harvard Business School, Karolinska Institute and Boston Consulting Group, and is systematically establishing standard sets of outcome measurement by condition. This year, they intend to select their first paediatric condition, and GOSH, in partnership with Texas Children’s Hospital, were pleased to respond to their request for recommendations of which paediatric conditions to consider first.

The 16 centres responded in kind with their common measures in those specialties, and the process of agreement (and disagreement!) began.

• Further rounds of iterations to agree the detail of outcome measure definitions.

GOSH made initial recommendations and, six months on, our clinical teams are reviewing the participating centres’ responses. We will shortly send out our comments based on the feedback received. So far, the emerging themes suggest that most of the specialties involved will reach

What’s next?

• Discussions about how, in time, to share data for comparison.

For more information, please contact Clinical Outcomes Development head Meredith Mora at meredith.mora@gosh.nhs.uk

Paediatric centres:

• Birmingham Children’s Hospital NHS Foundation Trust

Canada Alanna was one of the first runners up in the new monthly GEMS awards for her fantastic work in Learning and Development, and particularly with her successful launch of the Grow Network. To find out more about the GEMS awards, see page 11.

UK

• Alder Hey Children’s NHS Foundation Trust

• Montreal Children’s Hospital • SickKids Toronto

• Evelina Children’s Hospital (Guy’s and St Thomas’ NHS Foundation Trust) • Great Ormond Street Hospital for Children NHS Foundation Trust

USA

• Sheffield Children’s NHS Foundation Trust

• Boston Children’s Hospital • Children’s Hospital Colorado

Denmark

• The Children’s Hospital of Philadelphia

• Aarhus University Hospital

• Cincinnati Children’s Hospital Medical Center

Switzerland

• Texas Children’s Hospital

France • Hôpital NeckerEnfants Malades, Paris

Australia

• University Children’s Hospital Zurich

• Sydney Children’s Hospitals Network

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Life Study: understanding lives now and for the future

21st century. It will involve up to 80,000 babies and their families – much larger than earlier studies. The rich and detailed information collected before birth, at birth and during the first year of life will address gaps in knowledge about these very early stages of life.

such as placental samples, at the time of birth.” Life Study is working with the National Institute for Health Research Biomedical Research Centre at GOSH and University College London (UCL) to develop protocols for sample collection.

With this in mind, the study has several research themes chosen to answer important questions that matter to the health and lives of children now. One such theme addresses the rise in childhood obesity and physical inactivity – a major public health challenge. In order to reverse these trends we need to understand more about how eating and physical activity behaviours develop very early on in life.

With recruitment to the study due to begin in 2014, Professor Dezateux recognises that partnership with the NHS and the public is key: “We can’t do this study without the full support and commitment of clinicians and parents.” Working with focus groups of parents and parents-to-be to find out what they think might encourage or discourage parents from taking part. Life Study is taking steps to achieve the participation of the thousands of families needed.

“In a study as ambitious in size and scope as Life Study, we are committed to placing children and families at its heart. Families that take part will be supporting research that will make a real difference to our understanding of children’s lives now and for the future,” she adds.

“We will capitalise on the UK’s strengths in all areas of social, environmental, clinical and biomedical science, drawing on advances in a wide number of disciplines.

We will work together with leading researchers in many fields ranging from epigenetics to economics,” says Professor Dezateux.

“Another exciting part of the study is the links we are developing with local and national research centres, for example through our interests in epigenetics and the early development of the immune system. This requires collecting a range of biological samples,

Life Study is funded by the Economic and Social Research Council, Medical Research Council, UCL and the Wellcome Trust, and benefits from the government’s Large Scale Facilities Fund.

Professor Carol Dezateux Birth cohort studies follow the same group of children and their families from birth to adult life. These studies enable us to understand children’s early family, social, cultural, economic and physical environments and development. They also allow us to see how, when taken together, these factors influence future health, wellbeing and life chances. Professor Carol Dezateux is leading the largest UK birth cohort study to date, Life Study.

“We know from research based on the UK’s earlier birth cohort studies that a child’s experiences and their family and wider environment in the early years has a major impact on their future health, wellbeing and education,” explains Professor Carol Dezateux, Director of Life Study, Professor of Paediatric Epidemiology at the UCL Institute of Child Health (ICH) and Honorary Consultant Paediatrician at Great Ormond Street Hospital (GOSH). “We need to understand this in more detail by focusing on pregnancy and the first year of life in babies and their parents from different family,

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social and ethnic backgrounds across the UK. For the first time, we have an exciting opportunity to bring biological, social and environmental sciences into a UK birth cohort study from the outset in order to understand how these influences combine to shape children’s health and development.”

Life Study will be the fifth in a series of worldrenowned UK birth cohort studies. It builds on this exceptional legacy, but at the same time it has been designed with new features to ensure its future as a powerful and unique research resource well into the

“My passion for paediatrics developed as a medical student. My interest in research came later, as a junior doctor looking after babies with acute bronchiolitis. I realised that if I wanted to satisfy my curiosity about its causes, I would need to research healthy babies before they became ill. A Wellcome Trust fellowship enabled me to develop my research ideas and bring laboratory science into populations.

“My research focuses on children’s health in the early years and its improvement through prevention or early

detection. My experiences of leading research to collect biological samples from young children in the UK Millennium Cohort Study taught me the importance of bringing together biomedical and social scientists at the outset when designing such studies.

“My ambition to develop a cohort with this crossdisciplinary approach was realised when our team was selected to design and lead the UK’s new birth cohort study.

I am privileged to direct this exciting study and look forward to working with parents to chart the early lives of their babies.”

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Save the date!

Great Ormond Street Hospital Staff Awards Wednesday 11 June 5.30pm Kennedy Lecture Theatre, UCL Institute of Child Health

Upcoming Grow events The Grow Network is a support group that aims to empower black and minority ethnic staff to reach their full potential through the offer of education, training and development, and networking opportunities.

Grow Promotion Find out what’s on offer and how we can support you.

19 March

Free film show Cloudy With a Chance of Meatballs 2 (U) – 6.15pm Saving Mr Banks (PG) – 8pm Ground Floor Lecture Theatre, Weston House

Interview skills: the best approach 6 March 8.30–9.30am Teaching Room 1, Level 1, Weston House

12–2pm Teaching Room 1, Level 1, Weston House 28 March 5–7pm The Lagoon (staff side)

Inaugural Symposium 24 March 3–6pm

Kennedy Lecture Theatre, UCL Institute of Child Health Professor John Achermann, Professor of Paediatric Endocrinology and Wellcome Trust Senior Research Fellow in Clinical Science “Sugar and spice and all things nice: the story of SF-1” Professor Paul Gissen, Professorial Research Associate and Wellcome Trust Senior Research Fellow in Clinical Science “Breaking good”

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1 March – St David’s Day (Christian) 2 March – Start of the 19-day fast (Bahá’í) 4 March – Shrove Tuesday (Secular) 5 March – Ash Wednesday (first day of Lent – Christian) 15–16 March – Purim (Jewish) 17 March – St Patrick’s Day (Christian) 17 March – Holi (Hindu) 21 March – Naw-Ruz (Bahá’í New Year) 21 March – Jamshedi Noruz (Fasli – Zoroastrian) 26 March – Khordad Sal (Fasli – Zoroastrian) 30 March – Mother‘s Day (Secular)

10 March

12–2pm York House

25 March

Multi-faith festivals

t u o b a d n a Out Listen

Eat and drink

See

Watch

Do

Read

London Handel Festival St George’s Church, Hanover Square, Mayfair 3 March –18 April Price varies

Vikings: Life and Legend British Museum 6 March –22 June £16.50

Pancake Day Various locations 4 March timeout.com/london/things-todo/pancake-day-in-london

Street Feast Night Market Hawker House, 38–50 Pritchards Road, E2 9AP Friday and Saturday nights until 22 March Free

28th BFI London Lesbian and Gay Film Festival BFI Southbank 20 –30 March

The Shock of the Fall by Nathan Filer 2013 Costa Book of the Year “I found it dark, touching, sweet, funny and beautifully written… one of the best books about mental illness.” Jo Brand

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Charity page We need to raise at least £50 million every year to help rebuild and refurbish Great Ormond Street Hospital, buy vital equipment and fund pioneering research.

Making an impact: The GOSH Ball

In brief

Last word

Our Commitment

Back care

You still have a few weeks to tell us what you think the values and behaviours of Great Ormond Street Hospital (GOSH) should be. Staff, patients, families and carers are all invited to share their views.

Back pain is the most common musculoskeletal condition, affecting around 80 per cent of us at some point in our lives.

We spoke to Back Care Advisors and Moving and Handling Trainers Kate Owen and Beaux Bryant, and Occupational Health Physiotherapist Nick O’Brien, on how to maintain a healthy back. Here are their top tips.

Maintain good posture. Walk tall as though you have a piece of string between your pelvis and head, pulling you up.

Exercise. Walking, swimming, yoga… all exercise is good for you and will help maintain a healthy body and back.

Ensure you wear the correct clothing and use the correct equipment for the activity.

Review ergonomics at home and work.

Don’t slump in your chair – sit with the correct back support. Check your bed and mattress is suitable and supports you.

In December 2012, Great Ormond Street Hospital Children’s Charity organised The GOSH Ball to raise vital funds for the hospital. Held at Harrods department store, the evening included a champagne reception, dinner and live entertainment from Gary Barlow. The event raised a staggering £500,000.

One year on, we find out where that money has been spent. £340,000 towards the hospital’s redevelopment The hospital is in the midst of an ambitious four-phase redevelopment programme to rebuild two-thirds of the hospital site over a 20-year period. Our current focus is to complete the Mittal Children’s Medical Centre by transforming the former Cardiac Wing into the Premier Inn Clinical Building, which will provide much-needed new inpatient wards, more operating theatres and a post-anaesthetic recovery unit.

Seventeen pain control pumps Pain control pumps are vital pieces of equipment, providing effective pain management for more than 2,000 children every year.

The pumps can be set to administer a

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constant level of medication, but also allow the child or nurse to safely administer additional doses of painrelief medication as and when it is needed. As a result, the child feels in control of their pain and is able to manage it effectively.

Play team member for three months Play can help children and young people deal with fears or worries about hospital, their illness or treatment. The Play team provide a huge service to patients and their families, from alleviating boredom through fun activities to using distraction therapy to help a patient.

Two defibrillators When a patient has a cardiac arrest, a defibrillator can deliver a dose of electrical energy to the heart to help restore its normal rhythm. This equipment enables staff to start to revive the patient immediately, before the resuscitation team arrives. In this situation, immediate action is vital.

You can do this by: • Completing the survey online.

• For staff: surveymonkey.com/s/ GOSHvalues-staff • For patients, carers and family members: gosh.nhs.uk/values • Filling in the paper survey. Copies of the survey are available at the hospital main reception, York House (HR reception) and Weston House.

• Going to a ‘drop in session’.

More details can be found on GOSHweb goshweb/staff/Pages/ Our-Commitment.aspx As long as you complete and return a survey, your voice will be heard.

The consultation will close at the end of March so please do get involved.

We really want to hear from you.

For further information, please contact Helen Cooke, Assistant Director of Workforce Planning and Development, at helen.cooke@gosh.nhs.uk

Wear suitable clothing and shoes for the job you are doing. A low heel (2.5–4cm) for working allows the pelvis to be in the correct position.

Lifestyle. Stress can contribute to back pain as a secondary factor. Therefore, a balance between your work and home life can help to reduce stress.

Think. A minute spent assessing the task to be undertaken may prevent years of injury and disability, whether at work or at home.

If you injure yourself at work, you must complete a Datix form available on GOSHweb. Always inform your manager if you are experiencing back pain at work – they can refer you to the Back Care Advisory Service or to Occupational Health.

The Back Care Advisory Service can be contacted on ext 0149 or beaux.bryant@gosh.nhs.uk or kathleen.owen@gosh.nhs.uk You can contact Occupational Health at ohadmin@gosh.nhs.uk For more information on back care, head to the hospital’s GOLD page www.goshgold.org and select the Back Care Advisory Service button under the ‘Explore GOLD’ tab.

Left: Twelve-year-old Omar has spina bifida and comes to the hospital every year for treatment. He is using a pain control pump to manage his pain-relief medication. Above: Play Specialist Janet Holmes with a patient’s sibling on Bear Ward.

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race for the

Kids

TM

5k family fun run Battersea Park 8 June 2014

www.raceforthekids.co.uk 020 7239 3164 raceforthekids@gosh.org www.facebook.com/raceforthekids #raceforthekids

Visit the charity desk outside The Lagoon for further information.

Be part of something amazing!

Great Ormond Street Hospital Children’s Charity. Registered charity no. 235825.

Great Ormond Street Hospital Children’s Charity. Registered charity no. 235825.

Sign up today!