Youth members matters low res

r e b Mem Matters Autumn

2015

Interview with Olympian Victoria Pendleton see page 10

Faiza tells us about her treatment for congenital heart disease and how she is giving back to the hospital

NEW

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Contents 4 Foundation

6 Behind the scenes

Trust news

8 Being treated for

with the Play team

WELCOME

10 A chat with

congenital heart disease

Olympian Victoria Pendleton

11 New app shows how to give life-saving injection

12 Find out what the Young People’s Forum has been up to

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What happens… when you go to The Children’s Hospital School

Your Members’ Council achievements

16 Key dates for your diary

Hello, and welcome to your autumn edition of Member Matters!

redevelopment of the hospital is and I’m really excited to see where it goes next.

My name is Susanna Fantoni. I was a patient at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) for 13 years. Now I’m a member of the Young People’s Forum (YPF) and a newly elected Foundation Trust councillor representing patients from London. I’ve just finished my first year studying Media Practice at the University of Sussex and I write an online blog about what life is like at University with an invisible disability.

This month’s edition includes a behind-the-scenes look at the play workers and play specialists, plus what happens when you go to The Children’s Hospital School at GOSH. There is also a YPF update, and Clinical Nurse Specialist Sally Tollerfield speaks about her new app, which helps parents give life-saving injections to their children.

Throughout my time as a patient I experienced three different phases of the neurological ward: I got to see first-hand how important the

Enjoy the issue!

Susanna Fantoni

“I got to see first-hand how important the redevelopment of the hospital is.”

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FOUNDATION TRUST

NEWS Senior leadership team update Juliette Greenwood joined Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) as Chief Nurse in May 2015 after previously working here several years ago. Now a few months into her new role, we sat down and asked Juliette about her return to the hospital.

Could you tell us about your time before GOSH and why you decided to return?

Most of my clinical career was in children’s nursing. I was the Deputy Chief Nurse at GOSH 11 years ago, but I left to relocate out of London for a better quality of family life. People ask why I’ve come back, and I tell them it’s because the Chief Nurse role at GOSH is my ideal job.

Could you describe what the role of Chief Nurse entails?

I’m responsible for delivery of care and standards.

Being a member on the Trust Board means I don’t work in a silo – I’m as responsible for the whole business of the Board as much as everybody else. So it’s all-encompassing, but most importantly, it’s about being an advocate and providing a professional voice for nursing.

What are you most excited about in your role?

To be back in an organisation that holds a very special place in my heart, and to be working at a time with a new team, with opportunities

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Sustainability success

for helping GOSH and guiding it through to the next stage of its journey. I am excited to have the privilege – and I use that word deliberately – to be part of that stewardship.

It’s something that I never thought I’d have.

Do you have any priorities for your first year at GOSH? I’d like to establish myself within the hospital so that people know me, and identify what people don’t want from me, so I don’t do the wrong things. I want us to think about some advanced clinical practice roles and how we build on the good work we’ve done already around patient experience to take it to the next level. Patient experience cuts through everything: 95–96 per cent of parents who respond to our Friends and Family Test would recommend this hospital. How do we make it 100 per cent all of the time?

Looking ahead, what are your hopes for the hospital and how would you like to contribute to that?

My hope is that the hospital delivers on its ambition to become the best hospital for children – and that’s on every level– without losing sight of the child first and always.

A massive 62-metre-long piece of artwork showing the amazing ideas of GOSH patients is now decorating the walls of our ‘hospital street’. The artwork was the star attraction at the hospital’s Sustainability Fair as part of NHS Sustainability Day. It imagines gorgeous rooftop gardens and brilliant beehives, and suggests how we can use the latest technology to go green in the hospital between now and 2050.

The project was run by the GO Create! arts programme, with help from the House of Illustration, using drawings by more than 100 children and young people.

Winners! The Sustainability Story Artwork won a Highly Commended at the recent NHS Sustainability Awards, where GOSH also won the Energy and Carbon Management Award.

Want to know more? Check out carbonculture.net/gosh

GOSH on TV “Words just can’t sum up documentaries like Great Ormond Street. Everyone involved is brilliant – doctors, parents and, of course, the ailing children. Just brilliant. Brilliant and brave.” Radio Times The third series of BBC Two’s BAFTA-nominated documentary Great Ormond Street was aired in July and focused on children with rare diseases, and respiratory and neurological conditions.

The series received lots of fantastic media coverage, and was featured in all the major TV listings magazines and national newspapers. In a five-star review, the Daily Mail praised the hospital’s “amazing staff”.

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BEHIND THE SCENES

Jenny Dyer, Senior Play Specialist and Play Team Leader, tells us about life in the Play team

“As a Senior Play Specialist and Play Team Leader, no two days are the same. I get to do fun things like messy play and baking cakes, but I also use special techniques that can help a child who is worried about being in hospital. One minute I could be having a meeting with the other play staff and the next I might be building a rocket!

“We assess patients as soon as they come into the hospital.

The Play department has two different types of staff members, Play Specialists and Play Workers, who work together to make

sure the needs of patients and families are met.

“Play is so important for giving children fun and friendly experiences. It can help get patients ready for what might seem like really scary medical procedures and treatments. We can even show what specific tests involve by ‘playing it through’. There is a specially adapted doll hand that we use with medical equipment to show a blood test. Patients also get support for the challenges they may face with a life-long condition and future hospital visits.”

What’s the difference between a Play Worker and a Play Specialist?

“Play Specialists are trained to work therapeutically with the patient around what might happen when you are ill and in hospital. They also do lots of focused work, like helping reduce anxiety and stress.

“The Play Workers support the Play Specialists by providing lots of different creative play activities to patients, siblings and families.”

“The best part of my job is being able to support children and families when they need it most. By trying to relieve fears and worries we can help turn a negative experience in to a positive one. Play can be medicine too!”

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MY STORY Faiza was a patient at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) throughout her childhood, where she was treated for congenital heart disease. Now 21, she volunteers at GOSH as an ambassador and is a member of the Young People’s Forum (YPF).

“When I was one week old my parents could see I wasn’t feeding well and I kept turning blue. They took me to the GP who transferred me to GOSH where I was diagnosed with a complex form of congenital heart disease.

“The doctors spoke directly to me, which made such a difference. The staff are world-class. While I was an inpatient, the GOSH school teachers would come and see me at my bedside so I didn’t miss out on any studying.

“I had lots of treatment and operations, including open heart surgery – I woke up and I was so shocked to see the giant bandage! I also had surgery on my back to cut away vessels that my heart didn’t need. In my heart I now have an artificial valve that I like to call my heart robot.”

“I don’t think I would have got through it without the support from everyone at GOSH. You’re treated like a normal person, not made to feel like that special child that’s got all the problems.”

Support at the hospital

Celebrating for GOSH

“I’m okay now, though there are still things I can’t do. I can’t be an adrenaline junkie – no roller coasters for me, or skydiving, “I remember the play rooms at GOSH, I knew I was in a hospital and I’ll never climb Kilimanjaro or even fly on a plane without but it didn’t feel like one. My difficulty. But there are things mum said the longest I was in hospital was about three months, I can do to help this hospital, and I know I stayed on Ladybird which is like a second home Ward (which is now Bear Ward). to me. This year I did the RBC Race for the Kids and I I can remember my nurses celebrated my 21st birthday coming to play with me when for GOSH by asking people to my parents couldn’t be there.

make a donation if they could, instead of buying presents.

“I volunteer at the hospital, in the Young People’s Forum, and as an ambassador, and I can use my personal experience to empathise with children and their families. Some of the kids feel inspired when they learn that I was a patient here too.

“Basically, I want to do anything I can, because GOSH saved my life.”

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

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

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Interview with Victoria Pendleton CBE

What was it like when your brother was a patient at GOSH? It was a scary time, as I was too young to understand what was going on. When we visited, the staff were always really friendly. I particularly remember the smiley faces drawn onto the plasters after the blood tests! I knew that Alex was in the best place to get the treatment he needed.

GOSH in the 21st century Sally Tollerfield is an endocrine Clinical Nurse Specialist (CNS) at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH). She tells us about ‘My cortisol’, a smart phone app she developed that shows parents how to give their children a life-saving injection in an adrenal crisis.

What are your memories of the hospital?

It didn’t feel like other hospitals: it was less intimidating.

There were always lots of toys in the play areas. I felt very upset when I saw him feeling so ill after treatment, we always took cheese thins (biscuits) with us as they were his favourite snack and I think they still are!

With two gold and one silver Olympic medals (winning in Beijing and London), Victoria Pendleton CBE is Great Britain’s most successful female Olympian. She is a nine-time world champion, and the most successful British female track cyclist ever. Her twin brother, Alex, was treated for leukaemia at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) when they were both four years old.

We are only a year away from the 2016 Olympic Games in Rio. Thinking back to London 2012, what were the greatest moments for you?

The most amazing part of the 2012 experience was the overwhelming home support we felt as athletes. We were proud to represent our home nation – it was a huge honour. It almost feels like it was just a dream. I’m really looking forward to enjoying the Rio Olympics as a spectator and can’t wait to go to Brazil. It will be an amazing atmosphere, I’m sure.

What inspires you?

Improvement: I love plotting progress towards a goal, being a tiny bit stronger or faster than you were last week or month. Being an athlete was all about working back from a goal and challenging yourself. I still love challenging myself – there isn’t a sport in the world I wouldn’t try at least once!

If you could give one piece of advice to anyone with a sibling in hospital what would it be?

Be reassured that they are in the best possible hands at GOSH.

“Our team is made up of five endocrine clinical nurse specialists and we all look after children with hormone deficiencies, but not diabetes” explains Sally. “Most of the young people we see are outpatients, so we have to try and help them at home and away from the hospital.”

Adrenal crisis is a life-threatening risk for patients with cortisol deficiency. The CNS team spend a lot of time training families how to give the cortisol injection in an emergency.

“We now show patients and families the app in clinics so they can go home and show everyone they know. It’s really changed people’s lives.

One mum told us she now doesn’t worry about booking a babysitter for her son as the app can show anyone what to do in an emergency.”

My Cortisol has already been downloaded more than 1,200 times and has had lots of positive feedback from families and doctors. In fact, it’s so good that Sally got shortlisted for an innovation award at the Nursing Standard Nurse Awards 2015.

Kirsty Burgoyne, mum of seven-year-old Charles, said the app has changed her life: “When I wake up at 3am worrying about whether I can remember what to do in an emergency, I can sit in bed and watch the video.”

Other members of staff at GOSH are already thinking about what apps they can develop to help children with other conditions.

Sally knows that using technology like this makes perfect sense: “So many people have smartphones these days that apps provide a great way of accessing vital information.”

‘My Cortisol’ is free to download from the iTunes store and Google Play.

What is cortisol?

Cortisol is a hormone that acts as the body’s natural steroid. It has three main jobs: • helping to control the blood sugar level • helping the body deal with stress

Cortisol deficiency happens with the adrenal glands do not make enough cortisol. It can be easily sorted with replacement therapy by taking tablets several times a day.

When someone with cortisol deficiency gets stressed or unwell they can’t make more cortisol to help their body.

This is when life-threatening adrenal crisis might happen.

• helping to control blood pressure and blood circulation

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The app helps anyone anywhere give the injection the patient needs.

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Young People’s Forum update

Alice Rath, aged 18, has been an active member of the Young People’s Forum (YPF) since August 2012. She joined because she wanted to give something back to the hospital. Below, Alice tells us what’s been going on with the YPF. YPF represents patients aged from 11-25 at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH). We work hard to make sure the voice of the young people is heard.

increase awareness of the work we are doing for young people. This is also a great way to directly hear the opinions of young people and to get instant feedback from recent projects.

The forum has been involved in many projects, including contributing to the new hospital reception area which opened in 2014, and assisting with the content for the GOSH website for teenage visitors.

We have had many successes and are extremely committed to adding to our accomplishments and making services better for young people at GOSH. The YPF aim to improve the transition services to adult care, as this is something that affects the vast majority of older patients.

Check out the teenagers’ section of the website gosh.nhs.uk/teenagers Currently, the YPF are working on creating social media content so we can

Want to join the YPF? For more information visit gosh.nhs.uk/teenagers/ypf

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Faiza is also a member of the YPF. She wanted another opportunity to help the hospital and give more opinions for young people.

Read her story on page eight.

WHAT WE HAVE

ACHIEVED In February this year, our Members’ Council started its next three-year term at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH). Edward Green is a councillor representing patients from outside London. Here, he tells us what the Members’ Council have been up to.

This year, we said hello to some new councillors and goodbye to some old friends.

The new councillors have already attended lots of meetings and are bringing some really great skills to GOSH. This issue of Member Matters is introduced by one of our new councillors, Susanna Fantoni. Like me, Susanna was a patient here at GOSH and she now represents patients from London.

Councillors have also been involved with IT, retail, catering and the new hospital wayfinding system. They have been listening to your views and reporting back to the Trust Board to make sure that everyone has a voice at GOSH.

The council helped interview our new Chief Executive, Dr Peter Steer, and was involved in the appointments of the new Medical Director and Chief Nurse, as well as a new Non-Executive Director.

You may remember from our spring issue that Our Always Values were launched this year.

The Members’ Council worked with the hospital to help design and deliver this new set of behaviours and values, and your Lead Councillor, Claudia Fisher, spoke to staff at the event. It’s been great to see so many staff on board with Our Always Values and we want to see them in our membership too. We are going to be making sure we show Our Always Values in the work we carry out with you, the membership community.

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What happens... when you go to The Children’s Hospital School Danielle Valdar is the Assistant Headteacher at The Children’s Hospital School at Great Ormond Street Hospital for Children NHS Foundation (GOSH) and University College Hospital (UCH).

Where is The Children’s Hospital School and what does it look like?

The schoolroom is in the main Southwood Building at GOSH – it actually used to be a ward! We have primary and secondary school pupils and they can either join in with our lessons or study on their own. We even have laptops, iPads and interactive whiteboards to help learning, as well as desks that move up or down for students in wheelchairs. There’s an outside area too for sports activities, gardening and teaching on warm days.

How many people work there?

The school has 35 members of staff, which includes teachers, teaching assistants, support staff and volunteers. We teach around 90 students every day.

Who attends the school and how long for?

Any school-aged inpatient can attend our school. Under-fives are taught by our Early Years teachers in the Activity Centre. We teach all abilities and nationalities and always make sure there is a place for long-stay patients, children who have to keep returning to GOSH and anybody studying for their exams. If a patient can’t come down to the school we even do teaching at the bedside on the ward.

There are school holidays just like mainstream schools, but the Activity Centre stays open and offers all sorts of activities for every age.

What lessons do you have?

We teach the same subjects as mainstream schools as well as some extras like cooking, philosophy, media, textiles and

The Children’s Hospital School opened in 1951 with just one teacher.

art. Students can get help with work set by their own school teachers and even Skype their school from hospital!

What happens when patients go back to their own schools?

It’s a big step going back and we want to make sure pupils get all the support they need, like home tuition. We write a school report and send a copy to the student’s home school

How long have you worked at the school and what does your typical day look like?

I have worked at the school for two years and I really love teaching here! All the teachers meet every morning at 9am to discuss what is happening in school that day. Lessons start at 10am – a little later than a mainstream school because our students are busy with doctors’ ward rounds before then.

Every day is different here but it’s always lots of fun with hands-on, creative lessons happening all over the hospital. Lessons finish at 3.30pm and after that we write up what our students have done that day, hold meetings and begin planning for the next day.

Did you know?

• Ofsted rated us an ‘Outstanding’ school after our inspection in 2014.

• Muhammad Miah, Appointed Councillor, represents The Children’s Hospital School on the Members’ Council.

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Key dates for your diary Bake it Better 19–25 October 2015 The oven gloves are off.

Rise to the challenge this October by holding a bake sale and raising dough! Visit bakeitbetter.org to sign up for your free bake sale kit today!

Halloween party Wednesday 28 October 2015 All patients and siblings are invited to the hospital’s Halloween party in The Lagoon restaurant. Fancy dress is encouraged, but not essential!

Look out for posters around the hospital for more details or contact Patti Hogan patti.hogan@gosh.nhs.uk

Children’s Christmas parties Tuesday 15 December 2015,

Members’ Council meetings

Wednesday 16 December 2015,

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.

11am–12.30pm and 2pm–3.30pm

Wednesday 25 November, 4–6.30pm

Get into the festive spirit at the patient Christmas parties. The parties are being held at the Royal National Hotel, Bedford Way, London, WC1H 0DG. For more information please contact ellen.mccausland@gosh.org

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

1pm–2.30pm and 4pm–5.30pm

Readership survey Thank you to everyone who completed our readership survey. We really value your feedback. The winner of the Nintendo 3 DS XL has been contacted and we hope you enjoy the new look Member Matters.

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