May 2012

Spring/summer 2014 Member Matters

Interview with actor Martin Freeman see page eight

How a clinical trial at Great Ormond Street Hospital has helped Joe who has arthritis Contents 4 6 8

Q and A with Foundation Tracey Anthony, A chat with actor Trust news Lead Nurse, Theatres Martin Freeman 9 10 12

From birth to adulthood: I have arthritis: Understanding lives now Young People’s and for the future Joe tells his story Forum update 13 14 16 Key dates What we’ve What happens… when achieved you or your family have Key dates feedback for your diary Contents Welcome I’d like to welcome you to the spring 2014 edition of Member Matters for youth Foundation Trust members. My name is I was a patient here at Edward Green and I’m a councillor on the

Members’ Council representing patients GOSH recently and feel from outside London. very privileged to be My role at Great Ormond Street Hospital working alongside staff (GOSH) is to represent patients outside London on the Members’ Council. I was to ensure the patient’s a patient at GOSH recently and feel very voice is heard. privileged to be working alongside staff to ensure the patient’s voice is heard.

I would like to say a big thank you to all the members and staff who have been working hard together on events and programmes of work. Last year, we held a listening event with many of you, where we heard what we were doing well, and what we could do better. I am pleased to say that we are now working on many areas of improvement as a result, including new ways to navigate

around the hospital and patient Wi-Fi! Check out the update on page 13.

I hope you enjoy reading this edition of Member Matters and be sure to read the

interview with a very different type of doctor on page eight!

Edward Green Councillor for patients from outside London

3 Foundation Trust news

Suits you!

Dignity Giving Suits have been developed to provide patients with a comfortable and clinically functional alternative to the old-style operating gowns.

Patients at Great Ormond Street Hospital (GOSH) often need lots of lines, feeding tubes, catheters and drains. The new suits are designed Power to the young with discreet openings to allow people on Children’s access so healthcare professionals can carry out procedures without Commissioner’s affecting the dignity or privacy Takeover Day of the patient. Developed by a company called Fashion At Work During the October 2013 half-term week, the Young People’s Forum (YPF) ran a series of events to mark Children’s Commissioner’s Takeover Day. YPF Chair, George Howell, tells us more.

“The day gave children and young people the chance to work with adults while giving adults a fresh perspective on what they do.

“The events included a treasure hunt around the hospital, live music in The Lagoon restaurant, a memory wall, the Breakin Convention crew doing Hip Hop Hospital in the Activity Centre Our Commitment and the chance to shadow senior staff within We will be reporting the hospital. back on the results “It was a great success and enabled the YPF of this work in the to increase their awareness within the hospital. coming year. Thank you to everyone who got involved.”

4 Talking to teens: your views heard

At the end of 2013, we conducted a market research project to understand how teens are currently using the teenagers section of the GOSH website and how it meets their needs. Suits you! We also wanted to understand their feelings and experience of Foundation Trust membership.

in co-operation with Birmingham The research involved holding two workshops Children’s Hospital, the suits also with teenagers aged 13–15 years old (comprised provide better body temperature of current and former patients of GOSH and management during surgical a mix of Foundation Trust and non-Foundation procedures. The Velcro-style hook Trust members). We also conducted in-depth and loop fastenings mean that telephone interviews and a session with the YPF radiographers and MRI operators to share, discuss and confirm our understanding can be confident that the fastenings of the research from teens in the earlier stages. will not get in the way of any medical imaging. We will use the results from the research to improve and develop the teenagers section of GOSH has placed an order for 500 the hospital website and our Foundation Trust Dignity Giving Suits, which will be communications for teenagers. We hope this used in day cases to begin with, but will help to increase the number of younger in the long-term they hope that all members we have and their involvement in patients in the hospital will be able hospital projects. To find out more about the to wear them. findings from the research, and to share your thoughts on how the Trust can improve how it communicates with you, please visit www.gosh.nhs.uk/foundationtrustnews

Update on the food in the hospital

Food was an area identified for improvement at the listening event Catering team members take part in that took place in June 2013. The daily service briefings, regular training Catering department listened to the and weekly meeting forums, and a feedback and an agreed action plan working group has created new patient is being implemented. For example, menus, which were introduced this we have introduced a children’s menu spring. The Lagoon restaurant is open where the food is cooked-to-order, seven days a week with a breakfast, as well as continuing with the daily lunch and evening meal service. menu choices. In addition, we have a selection of vended main meals If you have any feedback for the and snacks available 24 hours a day. Catering team, please send an email to [email protected]

5 Behind the scenes

An interview with Tracey Anthony, Lead Nurse, Theatres

“Ask staff who they are. Talk to them, explain how you’re feeling and ask lots of questions.”

6 We spoke to Tracey Anthony, Lead Nurse for Theatres, who has worked at Great Ormond Street Hospital (GOSH) since 2006, to find out more about going into theatre for surgery.

What’s it like to go into theatre your condition very closely for a few hours. for surgery? Your parent may be able to visit you here. If your surgery is not an emergency, it will If you’ve had general anaesthesia, it’s be planned in advance. We understand that common to feel confused, chilly, sick or even it is a worrying time and we do a lot of work sad when you wake up. When the surgery around management of nervous patients and has been completed, the surgeon will let you families. We will try to address any anxieties and your parents or carers know how the that you may have before your surgery. operation went and answer any questions you have. It also depends on whether it’s your first time or not. If you aren’t ready, we would send Once your anaesthesia has worn off and you back to the ward and we would have you’re fully awake, you’ll be taken to the to look at a strategy for the next time to deal ward and monitored by nurses until you’re with that. It might be that you would need able to go home. a pre-med (medicine to help you feel more relaxed and may even make you sleepy) What tips do you have for taking to go through the surgery. the worry out of going into theatre for surgery? What should I expect before surgery? • Before you come into hospital for surgery, You would be seen by the doctor and the write down any specific worries that you have. anaesthetist. You would go through an • Bring your phone and/or tablet with you into admission process, which involves having the hospital so you can keep in touch with all your observations done, including blood friends and family. pressure, pulse and temperature, just to • Bring any other distractions you might want, make sure that they are all normal. You would like games or books. have your chest listened to and, depending • Ask staff who they are. Talk to them, on your age, you would be involved in the explain how you’re feeling and ask lots consent process – at 14 years of age you can of questions. sign with your parents. • Don’t be afraid to say if you have concerns If you’re 16 or over you can sign the consent that you don’t want to share with your yourself. You would then be given an parents or carers. It is OK to ask to speak explanation of what is going to happen to you. to the surgeon without your family there. On the Same Day Admissions Unit, admissions • Bring food with you to the ward if there are staggered. Based on feedback, we have is something specific that you would like, tried to reduce the time that you need to including any snacks that you may like to go without food and drink in preparation for eat after your surgery. going into theatre and improve the process • Don’t wear jewellery, as you will be asked for patients. to take it off. • If you want to have your hair back, please What happens after surgery? have it plaited or in a low pony tail, so it’s After your surgery is over, you’ll be taken to comfortable when you lie down. Make sure the recovery room, where nurses will monitor your hairband doesn’t have any metal in it. 7 Interview with Martin Freeman

British actor Martin Freeman is best known for playing Tim Canterbury in The Office, Dr Watson in Sherlock, and Bilbo Baggins in Peter Jackson’s The Hobbit film trilogy.

What does supporting Great Ormond What would you be if you weren’t Street Hospital (GOSH) mean to you? a famous actor? I figure it’s the least I can do. I was a patient A jobbing actor, hopefully. Or a struggling one. here briefly as a child, so there’s that connection. I think when I started out my hope was to But aside from that, it’s a massively important be someone who could pay the rent by doing place. If I can help at all, it’s my pleasure. work I was proud of. That’s actually pretty hard! I realised when I was young that I was What personal achievement never going to be Stevie Wonder musically, are you most proud of? so what was I good at? I thought acting was a reasonable bet. Oh, God, my children, no question. After a while, they don’t even feel like your achievement; Who inspires you the most? they’re way better than I could ever be. My children. My mum. Art, generally. Tony Benn, the politician, who sadly recently passed away. You know, the usual stuff...

If you had one piece of wisdom to share with the patients at GOSH, what would it be? I don’t think there’s anything I could pass on in the way of wisdom to the patients at GOSH. The children (and parents) I’ve met are something else. They are really going through some stuff, and bearing it with a bravery and grace that is honestly humbling.

Martin with patient Angel at GOSH.

8 GOSH in the 21st century From birth to adulthood: understanding lives now and for the future

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

“We know from first year of life will address gaps in knowledge research based about these early stages of life. on the UK’s earlier birth cohort The study has several themes, including the rise studies that a in childhood obesity and physical inactivity – a child’s experience major public health challenge. To reverse these and their family trends, we need to understand more about how and wider eating and physical activity behaviours develop environment in early on in life. the early years have a major Life Study is taking steps to achieve the impact on their participation of the thousands of families future health, needed: “In a study as ambitious as Life Study, wellbeing and education,” explains Professor we are committed to placing children and Carol Dezateux, Director of Life Study and a families at its heart,” says Professor Dezateux. Professor at the UCL Institute of Child Health. “Families that take part will be supporting “We need to understand this in more detail research that will make a difference to our by focusing on pregnancy, the first year of life understanding of children’s lives now and in babies, and the different backgrounds of for the future.” their parents.” Life Study is funded by the Economic and Life Study will be the fifth in a series of world- Social Research Council, Medical Research renowned UK birth cohort studies, involving Council, UCL and the Wellcome Trust, and up to 80,000 babies and their families – much benefits from the government’s Large larger than earlier studies. The information Scale Facilities Fund. collected before birth, at birth and during the 9 My story

I have arthritis

Joe from Sittingbourne was diagnosed with juvenile idiopathic arthritis (JIA) when he was six years old. He was so ill that he couldn’t get out of bed and missed weeks of school. Now aged 12, Joe’s life has been transformed by Great Ormond Street Hospital (GOSH). He tells us his story.

10 What is juvenile “It was during a trip to the hospital that I was idiopathic arthritis? made aware of a new clinical trial, a drug that was still at the testing stage. The new Arthritis is a painful condition that affects drug was called canakinumab and it wasn’t the joints and bones. The tissue lining the licensed for children in the UK. It was a joints, like elbows and knuckles, becomes bit daunting at first, taking part in this new inflamed, making them stiff and swollen. trial, but the alternative involved having an injection every day, so I was eager JIA is the most common form of arthritis to try this new option! that affects young people. There are several forms of JIA, most of them are “Eight months after being diagnosed, I started quite different to adult rheumatoid the new trial of canakinumab at the Somers arthritis. JIA occurs when the immune Clinical Research Facility at the hospital. Being system, which usually fights infections, on the trial means I have to visit GOSH once attacks the tissues of the body such as a month for my injection as well as having the lining of the joints. a series of other tests done.

“The difference the drug has made to my life is amazing. Beforehand, I could barely walk, “My first memory of GOSH was travelling up now I hardly notice I’ve got arthritis. I’m in the taxi from Sittingbourne where we live. pretty close to 100 per cent health wise – I I was with my dad and I was very nervous as can get the odd cold more than most people, we neared the hospital. Even though I was as my immune system is suppressed, but only six at the time, I do remember my mum I can do everything someone of my age crying when I was diagnosed – I think it was normally does. a shock to everyone. I thought arthritis was just something that old people get. When the “I’ve been coming to GOSH for half my life doctors explained to my mum that this was and the doctors and nurses there have made something without a cure, I think that’s what such a difference. Every time I visit I see other really upset her. children who are really sick. Without the staff working hard to develop these new drugs and “Although it wasn’t nice being diagnosed, it treatments, my life would be very different was good that we at least knew what was to how it is now. When I’m older I want to be wrong with me. At the time I couldn’t walk, a footballer or cricketer. Anything is possible play football or go to school. At one point now thanks to GOSH.” I couldn’t even get out of bed. The bit that upset me the most was missing out on seeing my friends and doing the things the other boys my age were doing. Could you share “After being diagnosed, I was put on steroids your story with us to and methotrexate (a drug that decreases the help other young people? pain and swelling caused by arthritis, and Get in touch at can reduce damage to joints and long-term disability). Although it helped, there were www.gosh.nhs.uk/ some bad side effects. For example, I used shareyourstory to get out of breath easily playing football.

11 Young People’s update Forum The latest news and views from the members of Great Ormond Street Hospital’s (GOSH) Young People’s Forum (YPF)! This issue, we hear from David.

“I got involved “We had a couple of guest speakers at our in the YPF at meeting in February. Darren from SMSR, a GOSH in July 2013 market research company, came in to discuss after seeing it the complaints system, and we had a two- advertised on hour focus group. It was a very insightful social media. conversation and hopefully we provided I was accepted him with some useful information to take soon after I back with him. applied and so far it’s been “The group as a whole are looking forward a really great to seeing how things develop and making experience. The a real impact within the hospital.” group meet every six weeks for a one-day session, where we discuss a wide range of things. One of the biggest projects we are working on at the moment is the YPF Are you aged between 11 welcome pack for new patients, which will and 25 and a current or former raise awareness by promoting what the patient at GOSH? Then you

YPF is all about. We are in the process of could join the Young People’s finalising the content of the packs. Forum! If you’re interested,

please email Nigel Mills at

“We hope to have a mini recruitment drive [email protected] over the coming year. The YPF recently with your name, age and celebrated its first birthday and we’re going a few sentences explaining from strength to strength. With a group of what you feel you could around sixteen attending the meetings, and bring to the forum. a membership pushing thirty, we’d still like to recruit four new members. Given the nature of life, people will come and go within the group, due to school, university, work and life commitments, so it’s good to keep numbers up.

12 What we’ve achieved Wi-Fi at Great Ormond Street Hospital

Caroline Joyce, Assistant Chief Nurse, tells us about the work that has taken place to establish guest Wi-Fi access, which is now live for inpatients and their families in Great Ormond Street Hospital (GOSH).

The network at GOSH is an internally managed The level of access determines the type private network and therefore all families of content available, with the highest level must complete and sign terms and conditions of filtering on the Go Kids network and the of service in order to gain access. These are Go Teens network. The network will be available from the main reception or ward monitored and any inappropriate use will be administration staff who can set up access addressed and access can be withdrawn at for children, young people or parent/carers any time. Patients will be able to access social as required. media and games through the network.

The network is filtered through the London Guest Wi-Fi is also available on the patient Grid for Learning, which controls The Children’s bedside entertainment system. Unfortunately, Hospital School IT network to minimise the this system only allows one level of access, risks of access to inappropriate content. which is set at the highest level of filtering – GO Kids. An internet café is also being re-established in The Lagoon restaurant with the highest level of filtering due to the public There are three levels nature of this space. of access available depending on the child or young person’s age:

1. Go Kids – for children under The Member’s the age of 12 years. Council has fought hard 2. Go Teens – for young people to get Wi-Fi into GOSH for over the age of 12 years. patients and families. We are delighted that this has Go Wi-Fi – for patients over 16 3.  now been achieved – years of age, parents and staff. thanks for listening!

13 what happens...

when you or your family have feedback

We spoke to Luke Murphy, who works in the Patient Advice and Liaison Service (Pals) team at Great Ormond Street Hospital (GOSH), to find out what you or your family can do if you have a concern or comment that you would like to raise.

Nathan Hannah

Luke

14 Why is it important to let us know What is Pals? your feedback? Pals is a team of people in an office in main GOSH needs to know what patients and their reception who know how the hospital works families really think about the services that and how to get things done. we provide. This is the only way that we can make things better. We try to get it right, How can Pals help? but we know that we could sometimes do There are lots of things that Pals can do to better. When we send out surveys, or ask try to help. We can give you advice about how for your views online, or give you the Friends best to speak up for yourself and we can also and Family Test to do on discharge, or ask speak to staff on your behalf. We can help you for your feedback, it’s because only you resolve any issues you may have with doctors, can tell us if we need to make changes. nurses and other staff. We can help you make a formal complaint if that’s what you decide How can I make a complaint? you want to do. We will be honest with you. Sometimes you may want to make a If we can’t do something, then we will say so. complaint or discuss problems that you are having with a member of staff. If you would Pals is also aware of what is happening in the like to make a complaint, here’s how: hospital, so we can tell you about becoming a Foundation Trust member, or what the Young People’s Forum is up to, what it means to be a volunteer and what’s happening for young people in the hospital. You may have We want you to tell us if you worries about your treatment or care, about are not happy. We will not treat leaving GOSH and going to adult services, or you badly if you speak up about you may just feel fed up and want to talk to something you do not like. someone. You don’t have to have to want to make a complaint to pop into Pals! Talk to your doctor, nurse or How can I contact Pals? someone you trust. Alternatively, you can talk to the Pals team. You can drop in whenever you like as you do not need an appointment. Phone us on 0207 829 7862 or email [email protected] – we are happy to visit you on a ward. If you are still unhappy, the Pals How will I be treated? team will share your concerns with the Complaints team. Our job is to listen and help. We will be led by you and we are there to support patients and families and make sure that your voice is heard. The Chief Executive will write to you to tell you what we are doing to make things better.

15 Key fordates your diary

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. open to all patients, families and carers. Come and enjoy face painting, games and

Members’ Council meetings delicious treats. Wednesday 24 September 2014, 4–6.30pm

Wednesday 26 November 2014, 4–6.30pm Free film show

Every second Monday of the month. The Annual General Meeting and children’s film show is at 6.15pm and the Annual Members’ Meeting adult film is at 8pm. Thursday 11 September 2014, 5.30pm, Ground Floor Lecture Theatre, Weston House followed by a reception For details of upcoming films, please see . The Kennedy Lecture Theatre, UCL Institute the hospital’s staff magazine Roundabout of Child Health, 30 Guilford Street, London WC1N 1EH If you would like to attend, please RSVP Health Service Discounts to [email protected] Don’t forget, as a Foundation Trust member of Great Ormond Street Trust Board meetings Hospital (GOSH) for Children NHS Wednesday 23 July 2014 Foundation Trust, you get access to

Wednesday 24 September 2014 Health Service Discounts. Simply visit Wednesday 26 November 2014 www.healthservicediscounts.com and register yourself as a Foundation Please visit www.gosh.nhs.uk/ for times of this meeting. Trust member of GOSH. trustboardmeetings

Summer party in the hospital Celebrate the summer on Wednesday 23 July 2014 in The Lagoon restaurant. The party is

Supporter Services, Fourth floor, 40 Bernard Street, London WC1N 1LE T 020 7239 3131 E [email protected] www.gosh.nhs.uk/foundation Follow us on Twitter @GreatOrmondSt or on Facebook www.facebook.com/GreatOrmondSt 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