Members matters spring 2015 youth (1)

May 2012

r e b m Me tters Ma ng Spri

2015

Inter view w it Paralympia h n Will Bayley see page 10

Edward tells us how GOSH has helped him overcome meningitis and osteomyelitis

Contents

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Foundation Trust news

Meet your new Members’ Council

Overcoming meningitis and osteomyelitis

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A chat with Paralympian Will Bayley

The 100,000 Genomes Project

Our Always Values launch

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Behind the scenes of Great Ormond Street

What happens… when you donate to Great Ormond Street Hospital Children’s Charity?

Key dates for your diary

e m o c l e W Hello, and welcome to your spri Member Mat ters!

ng edition of

delighted to My name is Peter Steer and I’m at Great e utiv Exec f Chie as you be joining NHS dren Ormond Street Hospital for Chil from e com I’ve Foundation Trus t (GOSH). was the Chief Queensland, Aus tralia, where I ensland Que lth Hea ’s dren Chil of Executive 9.

200 Hospital and Health Service from ped off the The sun was shining as we step a good sign. ly plane from Down Under – sure H. It’s a GOS at here I’m very excited to be some of for h muc so e don hospital that has nd. beyo and UK the in ren child est the sick c, emi acad I’m hoping that the mix of my g brin will ce rien expe clinical and leadership H. real value to GOS

It’s fantastic hav ing young people li ke you as part of ou r Foundation Trust .

ple like you It’s fantastic having young peo I hope to and t Trus tion nda Fou as part our Forum hear more from the Young People’s ome welc to like as we move ahead. I’d also I’m – rs cillo coun ed lect our newly and re-e the with king wor to ard forw really looking second Members’ Council as it begins its three-year term.

Dr Peter Steer Chief Executive, GOSH

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Foundation Trust news

Chief Executive update Since I’ve been at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH), I’ve been really impressed by our staff and the happy and positive atmosphere they create. But I also recognise the challenges we have ahead of us. These include making all our services as efficient as possible, harnessing information technology to drive improvements in patient care and experience, and working more in partnership with other healthcare providers to ensure better continuity of care for our patients.

We’ve begun to embed Our Always Values, the set of behaviours that parents, patients, staff and Foundation Trust members

A royal meeting

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like you helped us to develop. This is an extraordinary piece of work and I thank you for all of your input – it has been invaluable.

We now have a very clear and powerful description of how our staff should behave at all times so they can meet our promise of putting our patients first and always.

Details of the successful launch of Our Always Values can be found on page 12.

Another part of our hospital community is our fantastic charity. Many of you may have already been involved in their activities which raise vital funds to support the work of the hospital. You can read more about what they do for us on page 14. Enjoy the issue!

Back in February, Her Royal Highness the Duchess of Cornwall visited The Arthritis Research UK Centre for Adolescent Rheumatology. It is the world’s first centre dedicated to understanding how and why arthritis affects teenagers.

During her visit, the Duchess of Cornwall met Malaika, a 14-year-old GOSH patient who was diagnosed with juvenile arthritis in 2011. Malaika

is working with the centre to create a new mobile phone app, which will help other teenagers with the condition.

The centre opened in 2012, and is a collaboration between GOSH, University College London and University College London Hospitals NHS Foundation Trust. It is funded by Arthritis Research UK and Great Ormond Street Hospital Children’s Charity.

Cravings is a new exhibition at London’s Science Museum, which explains how and why our appetite works in the way that it does and what happens when it goes wrong.

The gallery was created with help from two nurses from Flamingo Ward, Lead Nurse Barbara Childs and Practice Educator Clare Paley. They set up hospital equipment used for total parental nutrition (TPN), which delivers nutrients straight into the blood to keep children fed properly when their gut is not working.

“It’s great that something we use every day in the hospital that few people know about is being shown to a large audience,” said Clare.

Cravings will run until 1 January 2016 and admission is free.

Around 40 GOSH patients are fed using TPN at any one time.

Artist Sofie Layton inspired a wave of creativity on Eagle Ward in March, showing patients, families and staff how to create embroidered and metal-embossed representations of kidneys as part of the hospital arts programme, GO Create!

The intricate artworks will now form part of a permanent display on the Ward. “I have enjoyed getting stuck into the project,” said one happy parent. “My children have had great fun and it has been very therapeutic.”

Sew many kidneys: a GO Create! update

Kingfisher and Badger Wards also got in on the act in March, painting pictures of their favourite fruit and veg with artist Freya Pocklington.

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Members’ Council

Your

Meet your new Members’

Council

A huge thanks to everyone who nominated and voted in the Members’ Council election 2015.

There was a really good turnout from our Foundation Trust members. If you know anyone who might like to become a member, just point them to our website gosh.nhs.uk/join Some of our Members’ Council are pictured above. You can find our new councillors listed below.

Patient and Carer: Patients from outside London (elected uncontested) • Edward Green • George Howell Patient and Carer: Patients from London • Susanna Fantoni • Sophie Talib 6

Patient and Carer: Parent or carer from outside London • Carley Bowman • Claudia Fisher (elected to the role of Lead Councillor on the Members’ Council in March 2015) • Camilla Pease

My story Overcoming meningitis and osteomyelitis, by Edward At 13 months old, Edward was diagnosed with meningitis and osteomyelitis (a condition where his bones became inflamed and painful) following a severe case of chicken pox. Now aged 12, Edward tells us what it’s been like coming to Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) for treatment.

Could you share your story with us to help other young people?

Get in touch at www.gosh.nhs.uk/ shareyourstory 6 8

“I don’t really remember coming to GOSH when I was younger, but my mum and dad do. After I was diagnosed with meningitis, the doctors also discovered that it had spread to my bones and I had surgery on my arm.

“Then, when I was four, my mum realised that I couldn’t open my jaw properly, and we were told that the ball and socket in my jaw had been eaten away, so I had an operation for that. They took out one of my ribs and put it into my jaw to get it moving again.”

The key to treatment “I went back to GOSH and stayed on Sky Ward in March 2014 for another operation on my right arm, because it was 8cm shorter than my left. The surgeons drilled into the growth plate and attached a cage to it with four pins. We had to stretch the cage four times a day by turning the pins with an Allen key. That didn’t really hurt – it tickled!

“After six months, I had the cage removed. I took out the pins myself and got to keep them as a souvenir! Then I was in a cast for about two weeks. My arm grew by 5cm, which is really good.”

The burger test “Sometimes I have problems with bullies at school, especially when I had the cage on my arm. But my friends at school have always supported me when I have an operation and they stick up for me.

“I still go back to GOSH every six months for a check-up on my jaw to see how much it has grown, as I might need to have surgery again in the future. My surgeon, Peter Ayliffe, always

used to joke with me about how much wider I could open my mouth. First he asked if I could fit a cheeseburger in there, now we’re up to a Big Mac!” Food for thought “I really like the food at the hospital – especially the spaghetti bolognese. I can also play my Xbox at my bed. I’ve been really lucky to do a few things for Great Ormond Street Hospital Children’s Charity, including helping to pour the first foundation at the Breaking New Ground ceremony with Tess Daly and Vernon Kay. But the best thing about going to GOSH is knowing that I’m going to be safe when I have the operations.

“I used to have a lot of fears around anything that happened before surgery, like gas masks and needles. I saw the play specialists and behavioural therapists at the hospital, and they really helped me deal with those fears.

You shouldn’t be scared about going to GOSH. Everyone there is really nice and they take good care of you.”

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Patient and Carer: Parent or carer from London • Mariam Ali • Lisa Chin-A-Young • Matthew Norris Public: North London and surrounding area • Mary De Sousa • Trevor Fulcher • Simon Hawtrey-Woore • Rebecca Miller

Public: South London and surrounding area • Gillian Smith Public: Rest of England and Wales • Stuart Player • David Rose Staff • Jilly Hale • James ‘Jim’ Linthicum • Clare McLaren • Rory Mannion • Prab Prabhakar

You can see what the candidates said about themselves and all the voting stats online at www.gosh.nhs.uk/ftelection If you have any questions for your representatives, please get in touch at foundation@gosh.nhs.uk

Young People’s Forum update George Howell, re-elected uncontested Councillor for Patients from outside London and Chair of the Young People’s Forum (YPF), gives us the latest update from the forum.

“It was a great opportunity to meet other young people and the staff who work with them in order to help ensure we have a voice in shaping the services that we use.

“In October 2014, some of the YPF members and co-ordinators attended ‘Young People Leading Change’, an event that brought together service users from the community and voluntary sectors who work with children and young people.

“We’ve also played a key role updating the teenagers’ section of the GOSH website, helping to ensure that content is relevant and publicises the opportunities to engage with other young people. There are dedicated pages on important issues, such as transition to Adult Services, and a YPF webpage that is regularly updated. Please take a look and click the link on the website to let us know your feedback!”

“The YPF presented the achievements of the forum from the past two years, such as updating the Young Persons’ Charter that highlights what young people should expect when in hospital. We also talked about what the YPF plans to work on in the future.

To see the teenagers’ section of the website, please visit gosh.nhs.uk/teenagers

Would you like to join the YPF? If you’re a current or former patient at Great Ormond Street Hospital for Children NHS Foundation Trust, or a sibling of a patient, and aged 11–25, we’d love for you to join the YPF! You can get involved in a range of activities, learn new skills, support each other and have some fun! For more information, please visit gosh.nhs.uk/teenagers/ypf 7

w rWilvl Baie Inte yley ith w

r patient Paralympic table tennis world champion Will Bayley is a forme Trust ation Found NHS at Great Ormond Street Hospital for Children went a (GOSH). Throughout his childhood and into his teens, he under ion condit rare a sis, grypo number of operations at the hospital for arthro y therap chemo had also that affects the joints of the hands and feet. Will oma. for a blood cancer called non-Hodgkin’s lymph What are your fondest memories of being at GOSH? Always the staff. They were so friendly and happy the whole time. I also enjoyed playing games with my friends on the ward.

You returned to the hospital in 2012.

What was the experience like? Had it changed much?

It was amazing – there were so many new amazing buildings and wards. I loved going back, and it still had the same great atmosphere.

What inspires you?

People who come back from adversity always inspire me – anything that can be accomplished against all the odds.

What are some of the challenges you’ve faced on the road to becoming a Paralympian?

There have been many. I think the main one is to stay focused every day: think about your goals despite the pain you might be going through.

How would you prepare for coming to GOSH if you were a patient again?

I’d bring lots of games and toys, and make sure that I had a table tennis bat near me!

What advice would you give to a patient whose dream was to take part in the Olympics or Paralympics?

I’d recommend that you stay positive and happy. The more that you go through in life, the stronger you become.

Will spent a lot of time at the Children’s Hospital School when he was a patient at GOSH. In November 2012, he officially opened the school’s redeveloped outdoor space, where he met the school’s Headteacher Jayne Franklin (pictured left).

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GOSH in the 21st century The 100,000 Genomes Project An ambitious project is underway to analyse the DNA of 100,000 NHS patients and their families, and Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) is set to play a leading role.

Over the next three years, DNA samples will be taken from NHS patients as part of the 100,000 Genomes Project. It is hoped that by analysing these samples and matching them with groups of people with similar healthcare problems, researchers and clinicians will be able to better understand and ultimately treat rare diseases and common cancers.

“This is a really exciting project, and offers a great opportunity,” says GOSH clinician and clinical lead for the project, Professor Lyn Chitty (pictured). “In the longer term, it is a project that stands to transform the NHS.” GOSH is responsible for recruiting a large proportion of patients onto the project and will collect genetic samples through a new network of hospitals. GOSH will focus specifically on collecting samples from patients with rare and inherited diseases. The scientists can then isolate DNA within the patients’ cells and ‘read’ the DNA letter-by-letter in order to build up a picture of their genetic code.

“If we can make it affordable and efficient enough, whole genome sequencing could be used as one of the first lines of investigation to help clinicians diagnose a patient’s condition

more quickly. They will also be able to identify the most appropriate treatment, without the need for numerous other tests,” adds Professor Chitty.

Want to find out more about the project?

Check out genomicsengland.co.uk/the100000-genomes-project/

Getting to grips with genomes Your body is made up of trillions of cells, and almost every cell contains a complete set of your genes. That complete set of genes is called a genome, and it contains every single letter (more than three billion!) of your genetic code.

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Our

Always Values

Over 2,500 patients, families, carers and staff have been involved in developing Our Always Values. On Tuesday 24 March, we held a special launch event in The Lagoon restaurant, where Claudia Fisher, Lead Councillor on the Members’ Council, was a guest speaker.

She tells us more.

I am a parent of a child who has been treated at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) since 2000.

Having a sick child is one of the hardest things in life for a parent to cope with.

Improving patient, family and staff experience are my focus and have become my passion.

I was involved in organising the Listening Event held in 2013, where the concept of developing a set of GOSH values was born.

My proudest achievement as a councillor has been representing parents in the group and developing those values.

Happier patients heal more quickly, happier parents care more effectively and happier staff work efficiently and have better job satisfaction – these values create a win, win, win situation for all.

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Speaking at the event, I highlighted how actively adopting these values in all interactions with colleagues is a great way to lead by example. It’s paramount to check that everything done at the hospital has Our Always Values at their core. They need to be lived, breathed and wholeheartedly believed in.

As one welcoming, helpful, expert, values-led team, staff, patients and families alike should stand tall and be proud of Our Always Values.

Together, we can work towards building an extraordinary environment made up from blocks of extraordinary behaviour and delivering extraordinary outcomes, ensuring we firmly place the child first – and always.

what happens... reat Ormond to the money you donate to G harity?

Street Hospital Children’s C We found out why the money raised by Great Ormond Street Hospital Children’s Charity is so important for the patients, families and staff at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH).

Our new Chief Executive at GOSH, Peter Steer, has said how lucky we are to have Great Ormond Street Hospital Children’s Charity – he even described it as the best hospital charity in the world!

The charity works really hard to raise money so that we can continue to provide the very best care for our patients and their families.

But it’s not just the money that makes the difference. The time and effort donated by the charity and GOSH’s supporters is essential.

“I’d like to thank all of you for your support – it makes such a difference to improving the lives of some of the sickest children and young people who come through the hospital’s doors every single day.”

Tim Johnson, the charity’s Chief Executive

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Funding areas Redevelopment

We are over halfway through our 20-year redevelopment programme to rebuild twothirds of the hospital site.

One of the new buildings, the Morgan Stanley Clinical Building, which is the first part of the Mittal Children’s Medical Centre, opened in June 2012. Since then, inpatient admissions have increased by around 15 per cent to 47,000! This has had a massive impact on the families and patients who come to the hospital.

Research

We need to continue our groundbreaking research to find new treatments and cures by funding new projects. During 2013/14, the charity funded a massive £5.7 million towards research projects.

Equipment

Last year, the charity funded new specialist medical equipment worth £7.9 million. One of these pieces of equipment was a new gamma camera (pictured below left), which produces awesome images of the inside of the body.

Welfare

Support for our patients, families and staff comes in many forms, such as counselling, accommodation, and training for staff. The charity also has hundreds of trained and wellsupported volunteers. One area this helps is the Outpatient department, which sees over 500 families every day!

“I was one of the first patients on Bear Ward. It’s so big and bright but with lots of nice touches. I wasn’t allowed to leave the ward during my stay, but the playroom for teenagers meant I still had things to do…”

Former patient Jordan

THE POWER OF YOUR POUNDS £20

could buy four neonatal masks, small and delicate enough to fit a newborn baby’s face.

£50

could give one of our families a good night’s sleep in the hospital’s patient and family accommodation.

£100

could buy four toys specially adapted for children to help with their rehabilitation.

Help us to support our incredible patients, families and staff. If you’d like to fundraise for the charity, visit gosh.org or call the Fundraising team on 020 7239 3131, Monday to Friday, 9am to 5.30pm. If you’re calling at any other time, just leave a message and someone will get back to you. Alternatively, you can email communityevents@gosh.org Whether it’s a school non-uniform day, running a 5k, or just eating a lot of cake, there’s something for everyone!

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A delicate balance

We go behind the scenes with Dollan Cannell, the Series Producer and Co-Director of the brand-new Great Ormond Street series airing on BBC2.

Adding a new dimension

An honest account

“For the third series we wanted to preserve the raw honesty of the previous two series but add a different dimension by bringing in more of the child’s voice. Doctors are seen wrestling with their own decision-making, but you also see teenage patients who are old enough to be part of that process, so we tried to ally those really difficult medical choices with the input of families and patients, too.”

“Our priority was to capture the staff and families in a way that wasn’t sensationalist or exploitative. We didn’t shy away from the difficult experiences that are part of the everyday life of the doctors that work there. The filming was 100 per cent in the moment and nothing you see is scripted, forced or for the sake of the camera.

“Because we were covering a number of different cases spread throughout the hospital, we divided the team up into different clinical areas, which gave us a chance to build close relationships with the various medical teams.

At times, something would happen with three different patients simultaneously, so we had to manage our resources and respond to things as quickly as we could.”

Great Ormond Street in numbers

“For the families and doctors, it’s really important that the programme is a true reflection of everything they’ve gone through over the year. And at that moment you hope that you’ve fulfilled the trust that you’ve asked for from them.

“It has been an incredible privilege to witness such high-stakes situations. You just hope that you can do their stories justice and tell them in the right way. It’s been an unforgettable experience.”

• 3 cameras

• 1 year to film

• 400 hours of footage

• 4 people involved in day-to-day filming

• 4 months to edit 13

s Key fodr yoaur te diary Members’ Council meetings Wednesday 24 June, 4–6.30pm Wednesday 30 September, 4–6.30pm Wednesday 25 November, 4–6.30pm All meetings will be held in the Charles West Room, Paul O’Gorman Building, Great Ormond Street Hospital, unless otherwise stated. All meetings are open to our Foundation Trust members and the public.

To find out more and book your place, please contact us at foundation@gosh.nhs.uk

Annual General Meeting and Annual Members’ Meeting Thursday 10 September 2015 For further information, please contact us at foundation@gosh.nhs.uk

Readership survey We want you to tell us your thoughts on Member Matters! For the chance to win a Nintendo 3 DS XL and a game, please go to surveymonkey.com/s/MMreadership and let us know your feedback. The deadline for completed entries is 30 June 2015.

RBC Race for the Kids Sunday 7 June 2015 Battersea Park

Our annual 5k fun run is back and better than ever! RBC Race for the Kids is open to everyone, and you can make your way around the course however you like. Visit raceforthekids.co.uk to sign up, and come and say hi to the Members’ Council, who will be running a membership stall on the day!

Health Service Discounts Don’t forget, as a Foundation Trust member, you get access to Health Service Discounts. Simply visit healthservicediscounts.com and register as a Foundation Trust member of Great Ormond Street Hospital for Children NHS Foundation Trust.

Supporter Services, Fourth floor, 40 Bernard Street, London WC1N 1LE T 020 7239 3131 E foundation@gosh.nhs.uk www.gosh.nhs.uk/foundation To help save the hospital money, you can subscribe to receive Member Matters by email. Simply register your email contact details at www.gosh.nhs.uk/membermatters Follow us on Twitter @GreatOrmondSt or on Facebook www.facebook.com/GreatOrmondSt

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