Adult members matters low res

r e b Mem Matters

Autumn

2015

Behind the scenes with the Play team see page six

Sally Tollerfield, Clinical Nurse Specialist, tells us about her work developing a smartphone app to help patients and families

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Contents

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Foundation Trust news

Behind the scenes with the Play team

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New app shows how to give life-saving injection

Successful treatment for Wiskott-Aldrich syndrome

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Members’ Council involvement

Interview with Staff Councillor Dr Prab Prabhakar

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How you can get involved

Key dates for your diary

WELCOME I’m Carley Bowman and I’m privileged to be one of your newly elected councillors representing parents and carers from outside London.

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TODAY

londonsantadash.co.uk Great Ormond Street Hospital Children’s Charity. Registered charity no. 1160024.

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It’s a role I’m very proud of and, while I’m still finding my feet, I’ve already seen the positive impact the Members’ Council makes by giving you – the membership – a voice.

Trust (GOSH) has played a big part in his life and still does to this day. The hospital is an inspiring place for our family and I’m so pleased that I have the chance to give something back.

I do hope you enjoy this edition of Member Matters. I’m delighted to have been part of the editorial team putting together the stories and giving you an insight into all the great work GOSH does for its patients, families and the community.

Thank you for your continued support.

However, my most important job is being a mum to a special little eightyear-old boy. Great Ormond Street Hospital for Children NHS Foundation

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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

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Sustainability success at a time with a new team, with opportunities 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 62-metre-long artwork that depicts the amazing ideas of patients at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) was the star attraction at the Sustainability Fair in celebration of NHS Sustainability Day. The illustration depicts the journey that GOSH needs to take to become a more sustainable hospital, from 2015 to 2050. The awe-inspiring project was run by the GO Create! arts programme, in collaboration with the House of Illustration, using drawings by more than

100 children and young people. It imagines lush rooftop gardens, beehives and animals, and suggests innovative ways to integrate high-tech renewable energy sources.

Now placed along the ‘hospital street’, the Sustainability Story Artwork was awarded a Highly Commended at the recent NHS Sustainability Awards, where GOSH also won the Energy and Carbon Management Award.

If you would like to keep in touch with the sustainability initiatives at GOSH or share your own ideas, sign up at 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 BAFTAnominated documentary Great Ormond Street was transmitted in July and focused on children with rare diseases, and respiratory and neurological conditions.

The series received extensive and positive 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 and the play team

“As a Senior Play Specialist and Play Team Leader, no two days are the same.

My day can go from providing a messy play session and baking cakes to using distraction techniques to support a child who is anxious about a procedure. I could be having a meeting with other play staff or even building a rocket!

“When patients are admitted to the hospital their needs are assessed to ensure they get the best support during their stay. The Play department has a combination of Play Specialists and Play Workers who work together to provide a holistic approach in meeting the needs of the patient and their families.”

The difference between a Play Worker and a Play Specialist “The Play Worker role complements the role of the Play Specialist, supporting them by providing a variety of play activities to patients, siblings and families.

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

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“Play Specialists are specifically trained to work therapeutically with the patient on the potential effects of hospitalisation and illness. They also carry out more focused support, such as helping to reduce anxiety and stress.

“The main difference between a Play Worker and a Play Specialist is

that the Play Specialist will use play in a very structured way to bring about a particular outcome. Using play can distract a child during a stressful or invasive procedure. We can even demonstrate what specific tests involve by ‘playing it through’.

There is a specially adapted model hand that we use with medical equipment to show a blood test.”

Play is medicine too “Play is a valuable tool in providing familiar and fun experiences for children.

It can also help develop coping strategies when having medical procedures and treatments. Play gives children a solid foundation to support them through the challenges they may face with a life-long condition and future hospital admissions.

“Play staff wear many hats and have a unique position, as their roles allow them to develop a trusting and safe relationship with the child or young person within a neutral environment.

“The most rewarding aspect of my job is being able to give support to a child and family, relieving fears and anxieties and helping to turn a negative experience into a positive one.”

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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 her work developing ‘My Cortisol’, a smartphone app that shows parents how to give a life-saving injection when their child is experiencing an adrenal crisis.

“There are five endocrine Clinical Nurse Specialists in our team and we are responsible for supporting children with any hormone deficiencies, except for diabetes” explained Sally. “As the majority of the young people we see are outpatients, it’s vital we do as much as possible to help them at home and in the community, and so a huge part of our role is teaching children and families to manage their condition.”

app. Vincent Harding from the team worked with me on the design and content. We settled on five tabs in the app to make it easily navigable. Apart from the training video itself, the app can store medication details and has an instruction page for medical professionals.

“We now show patients and families the app in clinic when we deliver training, and they can then go home and show Adrenal crisis is a life-threatening it to other family and friends who aren’t able to attend the risk for patients with cortisol appointment. It’s been lifedeficiency, and so the CNS transforming for many. One team spend a lot of time specifically training families how mum told us she’s able to book a babysitter as it’s finally to give the cortisol injection made other people confident required in an emergency. to look after her son.”

“I went to Medical Illustration and asked how we might go about creating a smartphone

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Even though it has only been promoted internally within the clinic, My Cortisol has already been downloaded more than 1,200 times and has received overwhelmingly positive reviews from families and professionals alike. Sally was recently shortlisted in the prestigious Nursing Standard Nurse Awards 2015, gaining recognition in the ‘innovations in your specialty’ category.

Kirsty Burgoyne, mum of sevenyear-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. It is about reassuring me when it is not an emergency as much as when it is. And when it is an emergency and you are under pressure and you can’t breathe, the app is there so I know I will do it right.”

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

Kirsty is sure it will make a difference to all parents who, like her, might be anxious about whether they will be able to give the injection in an actual crisis. “I might have been able to give the injection without the app, but it means there is someone holding my hand – and available 24/7.”

Other departments at GOSH have already expressed an interest in developing similar apps to help patients with other conditions. Sally believes taking advantage of technology in this way makes sense: “So many people have smartphones these days that apps provide a great way of accessing vital information.

You just need to have a clear idea of the key information to include and keep it succinct.”

What is cortisol?

Cortisol is a hormone that acts as the body’s natural steroid. It has three main functions:

can be easily controlled with replacement therapy by taking tablets several times a day.

• helping to control the blood sugar level

If a person with cortisol deficiency becomes very stressed or unwell, they are unable to increase the production of cortisol in their system to help the body cope. Entering adrenal crisis could be life threatening. The amount of hydrocortisone given needs to be increased quickly by giving an injection into the patient’s thigh.

• helping the body deal with stress • helping to control blood pressure and blood circulation Cortisol deficiency occurs when the adrenal glands, which rest on the tops of the kidneys, do not produce enough cortisol. A deficiency

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PIONEERING

RESEARCH Adrian T hra she r,

P

ediatric Imm uno in Pa sor log fes y ro

WAS is a genetic condition that affects between one and 10 children in every one million worldwide, and reduces their ability to fight infection. Symptoms can include bleeding episodes, eczema and other recurrent skin infections.

Patients with the most severe form of the immune condition Wiskott-Aldrich syndrome (WAS) have been successfully treated using gene therapy at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH).

The condition can very successfully be treated by giving children a bone marrow transplant (BMT), although this relies on donors being a good match for patients. Without transplantation, patients with WAS often don’t survive in to their 20s. As BMT is not always an option, gene therapy has been trialled at GOSH as an alternative treatment in a selection of patients. This new treatment reduced the average amount of days these children spent in hospital from 25 days in the two years prior to gene therapy, down to zero days in the two years following the treatment.

Adrian Thrasher, Professor in Paediatric Immunology at GOSH and author of the research, says: “The work shows that this method is successful in patients who in the past would have had very little chance of survival without a well-matched bone marrow donor.”

“If the positive effects of the treatment can be maintained even further into the future, it will provide confirmation that gene therapy can provide a ‘cure’ for this life-limiting condition and for many other similar bone marrow disorders.”

Professor Adrian Thrasher’s work is supported by Great Ormond Street Hospital Children’s Charity.

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Daniel’s story

Daniel, 15, was diagnosed with WAS when he was two, after he experienced recurrent infections and had eczema and bleeding episodes. He was referred to GOSH aged three and started taking medication to boost his immune system and to protect him from infection.

However, Daniel frequently had to be admitted to hospital, and as he got older he missed a lot of school and found it difficult to keep up with his friends. A bone marrow transplant is currently the only treatment for the

condition, but the family knew that without a well-matched bone marrow donor, Daniel’s future was uncertain.

In 2009, Daniel was referred to see GOSH clinician Professor Thrasher. He suggested a gene therapy trial that may have been appropriate for Daniel and one that could potentially help with his condition. Doctors explained that the gene therapy would involve Daniel’s faulty genes being extracted and replaced with working genes.

After enrolling on the trial in 2011, Daniel spent five weeks in isolation on Robin Ward. He returned home to continue his recovery and was able to go back to school seven weeks later.

Four years on, Daniel says: “My life has completely changed since having gene therapy. My skin is eczema free and I have a lot less joint pain. It means I can focus on my GCSEs at school without worrying about so many trips to hospital.”

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MEMBERS’

INVOLVEMENT In February 2015, our Members’ Council entered its second three-year term of office.

Here, Edward Green, uncontested re-elected councillor representing patients from outside London, tells us about some of your Members’ Council achievements over the past year.

This year, we welcomed some new councillors and said farewell to some old friends. The newly elected councillors have already attended many committee and council meetings and have brought valuable insight and experience to the council. This issue of your Foundation Trust newsletter is introduced by one of our new councillors, Carley Bowman, who represents parents and carers from outside London.

Street Hospital for Children NHS Foundation Trust (GOSH), are represented.

The council played an active role in the interview process for 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.

Our Always Values were also launched this year. The Members’ Council played a strong role in working with the hospital Councillors have also contributed their expertise to IT, retail, catering, wayfinding as a team to help design, implement and deliver the new hospital values. and communications. We have listened Our Lead Councillor, Claudia Fisher, and reported back to the Trust Board spoke at the launch event. It has been on patient stories, queried reports, key great to see so many staff engaged and, performance indicators, governance, hopefully, the new values also resonate and financial figures. The aim is to with our membership base. These values ensure that you, the members, users, will underpin all of the work we carry and key stakeholders of Great Ormond out with our membership community.

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MEET YOUR

MEMBERS’

COUNCIL

Consultant Neurologist Dr Prab Prabhakar was newly elected to the Members’ Council in February 2015 representing staff at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH). We asked Prab how he has found his new role and what he hopes to achieve.

Why did you stand for election to the Members’ Council?

What challenges do you think you will face as a staff councillor?

I am passionate about GOSH and its ethos. I trained here.

It’s a unique place made great by the patients and families we serve and the incredible staff who work here. Being a staff councillor gives me the opportunity to bring to the table the views of the staff in how the organisation is run and to hold the executives to account.

The Trust and the NHS as a whole face significant pressures in the years to come. Keeping the ship steady, and our eyes on the horizon, while holding onto the Trust’s values is the biggest challenge for everyone. It is an incredible honour and responsibility to be a staff councillor.

What was it like at your first Members’ Council meeting?

Fascinating. It was a long meeting with the whole Board present. It was incredible listening to fellow councillors, sharing ideas, views and suggestions. We really bounced off of each other. We were also able to hear from the executive team the plans for the Trust and the work the various departments are undertaking.

If you have any questions or suggestions for your representatives on the Members’ Council, email foundation@gosh.nhs.uk 13

The three levels of engagement Our membership community is growing and the membership voice is getting stronger.

There has been an increase in members joining Trust committees, attending Board meetings and helping us to recruit new members at events. Levels of involvement may change depending on circumstances. We want a membership that enables varying levels of participation according to the needs and desires of individual members.

LEVEL 1 Receive newsletters, annual reports, business plans.

Did you know?

You can update us with your email address and receive the newsletter electronically.

Vote in Members’ Council elections.

You voted in a full Members’ Council and six new councillors in the last election.

Speak to your councillors, tell them your views.

You can meet your councillors before every Members’ Council meeting in The Lagoon area of the hospital.

Membership involvement levels

Membership involvement levels

In doing so, we can communicate more effectively with our members and they can be involved as little or as much as they want knowing that all involvement helps make a difference.

Membership involvement levels

Get involved

LEVEL 2 plus level 1

Did you know?

Participate in surveys, questionnaires, consultations.

Your views directly feed into the Trust’s Annual Plan.

Participate in focus/discussion/ advisory groups.

Our Foundation Trust Get Involved monthly email will update you on all of the latest involvement opportunities.

Act as an ambassador for the Trust.

Our members are now helping us recruit their friends and family to the Trust and our Young People’s Forum are actively involved in recruiting and engaging with young people at community events and in schools.

LEVEL 3

plus level 1 & level 2

Did you know?

Stand for election as a councillor and represent the views of their constituency, raising views on behalf of their members.

T here are 27 representatives on our Members’ Council.

Be a Trust volunteer or a membership champion.

There are more than 800 volunteers in the Trust.

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.

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Key dates for your diary Members’ Council and Trust Board meetings 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.

Wednesday 25 November, 4–6.30pm To find out more and book your place, please contact us at foundation@gosh.nhs.uk

Trust Board meetings 2015 Wednesday 25 November

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 Thursday 29 October 2015 2pm–4pm 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 pattie.hogan@gosh.nhs.uk

Children’s Christmas parties Tuesday 15 December 2015, 1pm–2.30pm and 4pm–5.30pm Wednesday 16 December 2015, 11am–12.30pm and 2pm–3.30pm 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

Please visit gosh.nhs.uk/ trustboardmeetings for further details.

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