Member matters adult autumn16

r e b Mem Matters

Autumn

2016

Astronaut Tim Peake calls patients from space A day in the life of a ward manager See page six

KNEADS YOU! 17–23 OCTOB E R 2 0 1 6

KING O KITCHEF THE N GOSH p atient Rudy

Hold a bake sale and raise some dough to help children at the hospital bakeitbetter.org Great Ormond Street Hospital Children’s Charity. Registered charity no. 1160024.

Contents

GREAT ORMOND STREET HOSPITAL

4 Foundation Trust news

6 A day in the life of a ward manager

8 Major Tim Peake calls GOSH from space

10 Pioneering research – clinical trial of arthritis drug

12 Members’ achievements

14 Members’ Council in the community

15 Get involved

16 Key dates for your diary

Introduction Welcome to Member Matters, the magazine for Foundation Trust members I’m Nicola Grinstead and I am the Deputy Chief Executive at Great Ormond Street Hospital (GOSH). I’m responsible for the day-to-day operational running of the hospital, including our two clinical divisions – Charles West and JM Barrie – as well as our International and Private Patients wards.

As Foundation Trust members, your views and impressions of the hospital are important to GOSH. We’re keen to find out what you think about how the hospital operates, and what we could do to improve on the life-saving work we do here. Please feel free to contact your councillor at any time at foundation@gosh.nhs.uk – they act as a link

between you and the hospital and represent your views. You can also attend our Trust Board or Members’ Council meetings as observers. The dates for these meetings are listed on the back of this newsletter.

Read on to find out about what’s been happening at GOSH – from clinical trials to the Mayor of London visiting patients. We even had British astronaut Major Tim Peake call patients live from the International Space Station!

I’d like to thank you all for your continued support of GOSH, and hope you enjoy this autumn edition of Member Matters.

3

FOUNDATION TRUST

NEWS

Morgan Stanley Garden The Morgan Stanley Garden for GOSH, designed by Chris Beardshaw, had its public debut at the RHS Chelsea Flower Show on Monday 23 May and was awarded one of six gold medals for its plant-rich design.

Mayor of London visits patients

British actress Rosamund Pike helped officially launch the special garden at Chelsea, alongside seven-year-old GOSH patient Ava, who comes to the hospital regularly to be treated for cystic fibrosis.

On 5 July – the 60th anniversary of the Clean Air Act – the Mayor of London, Sadiq Khan, visited Great Ormond Street Hospital (GOSH) for a press conference to launch his proposals to tackle air quality in the capital, speaking alongside Dr Peter Steer, GOSH’s Chief Executive. The Mayor also visited Badger Ward to understand the impact that pollution has on the health of respiratory patients – meeting Fredi, nine, who has cystic fibrosis, and nine-year-old Scarlett, who recently had lung surgery.

The medal-winning garden has now been transported to the hospital to provide a therapeutic space for patients and their families. It was meticulously dismantled and rebuilt at the hospital by the team behind BBC’s DIY SOS, and now lives between the Morgan Stanley Clinical Building and the Old Nurses’ Home.

Electronic Patient Records The Electronic Patient Records (EPR) Programme, which will make it much easier for hospital staff to access key information to help care for patients, is starting to gain momentum across the Trust. Over the past nine months, more than 200 staff have been working to make sure that we scope and pick the right system for GOSH. Doctors, nurses, allied health professionals, managers and administrators are evaluating potential systems and attending almost 100 hours of demonstrations. In September, as part of the formal procurement, staff attended sessions to score providers on areas like usability, and look and feel.

4

You can help shape the future! The EPR Programme has a group for interested patients and parents, helping to design an electronic patient portal. Your ideas can help shape the portal, by telling us how you want to see and contribute to your electronic patient record. To get involved, email EPR@gosh.nhs.uk

Nutrition and Hydration Week Earlier in the year, GOSH celebrated Nutrition and Hydration Week, a global event focusing on the health benefits of eating and drinking well. We spoke to patients and families about the positive changes we have made to our meal services in the past year, as well as asking them for their thoughts and ideas

for future menus – over 387 conversations were recorded.

The hospital held events every day – from ‘Protected Mealtime Monday’ to ‘Fantastic New Menu Friday’. The smoothie bike in The Lagoon was particularly popular, with over 100 smoothies made.

We are now looking at the information that we collected to see what changes we can make to improve mealtime experiences at GOSH.

We would love to hear your thoughts and feedback on your experiences of food and drink at the hospital, so that we can improve our services for everyone who uses them. This could include the food in The Lagoon restaurant, hot and cold drinks sold in the coffee bar, or the meals we serve on the wards.

Please share your views by emailing catering.feedback@gosh.nhs.uk

5

BEHIND THE SCENES

A day in the life of a ward manager

Ward Manager Melissa Strickland has worked at Great Ormond Street Hospital (GOSH) for more than 20 years, and was recently the proud winner of the Gwen Kirby Award – for excellence in the nursing care of children – at GOSH’s Annual Staff Awards.

As part of the Give to GOSH appeal, Melissa was shadowed by the Evening Standard to give a nurse’s view of life in the hospital. Here’s what her day looks like…

are kept informed and updated. Melissa finds this time invaluable as it allows her to deal with any concerns or questions our families might have, and make sure their needs are being met.

Melissa is in charge of Koala Ward, and looks after patients with neurological and craniofacial conditions and acts as an emergency ward for brain injuries.

Throughout the morning, doctors from the Neurosurgery, Neurology, Craniofacial, Telemetry and Ophthalmology departments carry out their rounds and Melissa is on hand to help make sure there is a smooth pathway of care for all patients.

Koala is one of the busiest neurosurgery wards in the country and the biggest centre for children needing brain surgery and neurosurgery for epilepsy. Next year, it will increase its capacity by eight beds.

By the end of the morning, Melissa has seen every child on the ward, found beds for new patients, and reassured Melissa’s usual shift starts at 7am, worried parents. “When you have been when the night team briefs her on all here for a long time you learn things 24 children on the ward. Melissa then you don’t read in books,” says Melissa. makes her ward round, speaking to “The longer you are a nurse, the more patients and parents to ensure that they you develop expert intuition. Sometimes offering a cup of tea to a parent is enough to start a dialogue, and to build up a sense of trust and openness.”

“Sometimes offering a cup of tea to a parent is enough to start a dialogue, and to build up a sense of trust and openness.”

Her afternoons are then spent catching up on paperwork, monitoring patients, and making sure that any emergency admissions are taken care of.

At the end of the day, Melissa heads home to her partner and five-yearold daughter. The pedometer on her phone shows that she’s walked over 20,000 steps!

6

7

GOSH IN THE

We asked Andy, Rossana, Dan and Peter from the ICT team how it all worked...

21st CENTURY

“We couldn’t believe it when we were requested to help Tim connect with patients live from the International Space Station.

by configuring state-of-the-art video conferencing technology and network links. The Activity Centre here at GOSH, via NASA mission control in Houston, USA, was connected to Tim who was orbiting Earth on the International Space Station.

“Firstly, we had to “Using a Microsoft Surface tablet with a successfully pass a built-in camera, patient Maddison joined technology test with the the call from an isolation ward, along European Space Agency with the children in the Activity Centre. in Germany before being The event was also streamed and approached by the National Aeronautics watched live in all wards and Space Administration (NASA). across the hospital.

“The video link enabled the children to “The link-up was ask direct questions to Tim in real time. originally scheduled for This was made possible by our team 15 minutes, but Tim extended his time for another 25 minutes.

We were linked up, live, to the International Space Station for a total of 35 minutes.

“It was such an amazing event and a great success!”

A call from out of this world 8

In May, Great Ormond Street Hospital (GOSH) patients received the long-distance call of a lifetime when British Astronaut Major Tim Peake took time out of his day on board the International Space Station to link up live with the hospital.

Around 30 patients assembled in the Children’s Hospital School’s Activity Centre and discussed how Tim spends his day carrying out scientific research, just like the pioneering research carried out at the hospital. He shares many similarities with some of our patients,

After Tim became the first person to run the London Marathon in space in April, nine-year-old patient Zak asked for some training tips for his own special race, the RBC Race for the Kids, Great Ormond Street Hospital Children’s Charity’s 5k family fun run that took place on Sunday 15 May.

Patient Maddison spoke to Tim via video link from her hospital bed

including being isolated from his family and needing a restricted diet.

Tim was also asked questions about how to stop things floating around on the space station, how he cleans his clothes, and what he misses about home.

Zak was advised by Tim to have lots to drink before he runs so he doesn’t get dehydrated, but mainly to enjoy himself and have some fun!

To say goodbye, patients were treated to an incredible view of the sun rising over the Earth from space.

9

PIONEERING RESEARCH Thanks to a clinical trial that took place at Great Ormond Street Hospital’s (GOSH) Somers Clinical Research Facility and across the world, the long-term health of children diagnosed with a serious arthritic condition has been transformed. methotrexate and steroids are available, taking this medication in the long-term can cause serious unwanted side effects.

The TENDER trial In 2008, Professor Patricia Woo and Dr Despina Eleftheriou led the TENDER trial – the first clinical, early-phase trial outside Japan to investigate the effects of smaller doses of tocilizumab, a drug that had already been licensed for adults with arthritis.

When she was four years old, Alice was diagnosed with systemic juvenile idiopathic arthritis (sJIA), an inflammatory disease where there is activation of the immune system attacking the joints, causing fever, skin rashes and other severe, lifethreatening complications. sJIA is the most common rheumatological inflammatory disease in children – at GOSH, there are more than 40 patients with the condition. Although treatment options such as

10

Alice and her family were asked to take part in the TENDER trial at GOSH. It was the largest randomised placebo-controlled study in this relatively rare disease group, taking place in 43 places around the world.

By 2011, the National Institute for Health and Care Excellence (NICE) had recommended tocilizumab for use in sJIA. Since then, it has been adopted as a treatment option for children with sJIA around the world. The decreasing proportion of children on methotrexate and steroids suggests that young patients are already benefitting from it.

A standard of care As tocilizumab is now licensed, Alice, now age 11, is able to receive her infusion at her local hospital, which means she doesn’t miss out on going to school or seeing her friends. She only returns to GOSH for followup appointments.

“I’m quite stiff in the morning and I can’t run as fast as other people at school, but I don’t really think about my condition day-to-day, as it doesn’t hurt any more,” says Alice.

“I think other children should consider taking part in clinical trials because you could get better and you could help a lot of other people to get better, too.”

To read Alice and her mum Nerys’ experience of taking part in a clinical trial, visit gosh.nhs.uk/researchand-innovation

Despina Eleftheriou, Senior Lecturer at UCL and GOSH Honorary Consultant in Paediatric and Adolescent Rheumatology “For the trial, around 120 patients were recruited worldwide and GOSH was the top recruiting centre.

“Tocilizumab seemed to be the drug that switched off inflammation, with the majority of patients having complete symptom resolution. They were able to stop taking steroids and were gradually weaned off methotrexate. Thanks to the positive results from this study, NICE approved the use of tocilizumab for sJIA. This has really changed the quality of life for patients and revolutionised how we treat sJIA. “Research is important because of the patients and families themselves – there are still a lot of unanswered questions. I like being involved in finding out answers to those questions, particularly ‘why me?’ and ‘why did I get sJIA?’. Getting good, effective, personalised treatments that are safe is a

major priority for my research.

We want to change the outcomes for these patients and find the right treatment for each and every one of them.

“There were so many people involved with the TENDER trial – teams from physiotherapy, the pharmacy, clinical and nursing, and phlebotomists and lab staff – it couldn’t have happened without them. Without the support of the Somers Clinical Research Facility, this trial simply wouldn’t have worked.”

11

MEMBERS’ ACHIEVEMENTS

Ethan’s story Ethan has been coming to Great Ormond Street Hospital “After hoping that medicines would (GOSH) for as long as he can help my heart to recover, my parents were told that a heart transplant was remember. In 2000, he was my only hope of survival. At seven transferred to GOSH from the months old and weighing only 7kg, Evelina Children’s Hospital the odds were against me as I could in London, where he had only receive a donor heart from a small been on life support for three child. GOSH is one of only two centres in the UK that performs paediatric months, after a virus caused heart transplants. One day, the call his heart to become weak came to say that a family had made and stretched, a condition the amazing decision to donate their called dilated cardiomyopathy. child’s organs to save the lives Now, as a member of the of others.

Young People’s Forum (YPF), “I was very lucky to receive a new heart.

Ethan is an active member My operation and recovery went well and less than three weeks later I went of the Foundation Trust. home to Brighton. As I grew up, GOSH

Ethan had a heart transplant at GOSH when he was just seven months old

12

became a very familiar place, like a second home where I feel comfortable.

At times, the procedures that I need can be scary, but the staff are kind and friendly which really helps.

to take part in interviews for a new Congenital Heart Diseases Transition Clinical Nurse Specialist. The interview process included taking part in role-play scenarios involving similar experiences to mine, and asking the candidates questions. I was involved in discussing which candidate might be best for the role and helped to make the final decision. It was also a good insight into future interviews that I might have myself.

“Although I need to take medication daily, I’ve never known any different and it’s just a part of my life. There are side effects that are sometimes difficult to deal with, but I’ve also had many great opportunities because of my transplant. In 2012, I took part in the World Winter Transplant Games and won gold in the snowshoeing event. I also love skiing and have been very lucky to go to Switzerland “It was a privilege to take part and I and take part in a Transplant felt that my opinion was valued. It Adventure Camp for Kids Ski Camp felt good that I could give a different with other transplant recipients from view of how the candidates interacted all over the world.” with me as a young person – this would be a big part of their role, Staying involved at GOSH and it really is important for staff to communicate well with children, “Now I’m 16, studying for my GCSEs, young people and families. and am hoping to train to be a pilot.

I’m approaching my transition to adult “As a YPF member, I can be a voice services and will be sad to leave GOSH, for other patients and help with but I hope to keep in touch by continuing improvements for children and young as a member of the Young People’s people who may be patients in the Forum. I have been a member for 18 future. The interviews were one of months and it’s good to feel that I can many projects that I’ve been involved make a positive difference to the hospital. in, and I hope that they will be able to help choose other staff that come to “As a member of the YPF and a work at this very special place.” cardiac patient, I was recently invited

“As a YPF member, I can be a voice for other patients and help with improvements for children and young people who may be patients in the future.”

13

MEMBERS’ COUNCIL

GET INVOLVED

IN THE COMMUNITY

Staff and patient councillors engage students at St George’s University Part of our duty as a Foundation Trust and as a children’s hospital is to reach out and engage more with young people.

Early this year, our patient councillor and second-year medical student Sophie Talib organised a visit to the Paediatric Society at St George’s University in Tooting, teaming up with staff councillor and GOSH Consultant Paediatric Neurologist Dr Prab Prabhakar.

Signing up new members at RBC Race for the Kids There was a race for recruitment at the RBC Race for the Kids at the Queen Elizabeth Olympic Park in May. A team of 11 – including members, councillors and Great Ormond Street Hospital (GOSH) staff – signed up 74 new members on the day, with many more signing up after the event.

More than 7,500 people took part in the 5k race to raise funds for Great Ormond Street Hospital Children’s Charity – including three members of our recruitment team!

Thank you to everyone who took part in the event or sponsored those running. If you’d like to take part next year, just head to gosh.org/register-your-interest-rbc-race-kids or email raceforthekids@gosh.org

14

Sophie and Prab spread the word about Foundation Trust membership, offered career advice, and gave students the opportunity to hear more about the Neurology team at GOSH. They were thrilled to see over 20 students sign up as members, and will run another session next year!

“Our junior colleagues play an important part in shaping the future of the NHS – engagement events like these help us to deliver this message and showcase the incredible work we do at GOSH to future doctors” – Dr Prab Prabhakar

London Santa Dash is back for its second year! Over 3,000 wannabe Santas will descend on Clapham Common on Sunday 4 December 2016 to take on a festive 5k or 10k route to raise money for Great Ormond Street Hospital Children’s Charity.

Christmas really will come early – with snow machines, brass bands, a live DJ and loads of other festive surprises!

Get your place on the start line and sign up now at londonsantadash.co.uk If dashing around in a Santa suit isn’t for you, why not come to Clapham Common and be part of the amazing atmosphere? We need lots of ‘Santa’s little helpers’ to volunteer and make sure the day runs like clockwork. If you’re interested to know more, email londonsantadash@gosh.org

15

KEY DATES FOR YOUR DIARY Members’ Council and Trust Board meetings

Play in Hospital Week

All meetings are open to our Foundation Trust members and the public.

Great Ormond Street Hospital

For further information and to book your place, please contact us at foundation@gosh.nhs.uk

Members’ Council meetings Wednesday 7 December 2016 Wednesday 1 February 2017 All meetings run 4–6.30pm Charles West Board Room Paul O’Gorman Building Great Ormond Street

Wednesday 28 September

Annual General Meeting (AGM) and Annual Members’ Meeting Tuesday 11 October 5.30–7pm Lecture Theatre Weston House 63–67 Great Ormond Street London WC1N 3HZ

Halloween party Tuesday 1 November

Trust Board meetings

2–4pm The Lagoon restaurant

Wednesday 7 December 2016 Wednesday 1 February 2017

Come along to enjoy some spooky treats – including a dedicated area for teenagers!

Members are welcome to attend the public session, usually from 1.30pm. Exact timings will be given nearer the date.

Please visit gosh.nhs.uk/ trustboardmeetings for further details on times for the Trust Board meetings.

For more information or to contact your councillor, please email foundation@gosh.nhs.uk

Takeover Day Monday 14 November – Friday 18 November 2016 In November, young people will take over roles at Great Ormond Street Hospital (GOSH) to celebrate the Children’s Commissioner for England’s Takeover Day. To find out more contact fiona.jones@gosh.nhs.uk

Listening Event Saturday 19 November 10am–2pm Patients and parents are invited to come along to share their experiences of GOSH. For more information, contact emma.james@gosh.nhs.uk

Membership Engagement Services Ltd 33 Clarendon Road London N8 ONW Email foundation@gosh.nhs.uk or visit our website gosh.nhs.uk/foundation To help save the hospital money, you can subscribe to receive Member Matters by email. Simply email your contact details to foundation@gosh.nhs.uk Follow us on Twitter @GreatOrmondSt or on Facebook facebook.com/GreatOrmondSt