August 2014

The staff magazine of Great Ormond Street Hospital for Children and the UCL Institute of Child Health

How GOSH has the energy to keep going , page six

A rare gift How a generous donation has made the Centre for Research into Rare Disease in Children a reality, page 12

August 2014

All staff event with Julian Nettel All staff are invited to a meeting with Julian Nettel, the Trust’s Interim Chief Executive.

There will be two open sessions in the Lagoon. These will be an opportunity to raise any questions you may have with Julian, as well as to hear an update from him about the Trust.

Open Sessions Monday 15 September, 12–1pm Thursday 18 September, 8–9am Lagoon (staff side)

Welcome

Contents

from the Interim

Regulars

Chief Executive

In the news

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Word on the tweet

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GO Create!

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Julian Nettel Welcome to this month’s edition of Roundabout. I would like to draw your attention to two articles in particular.

Firstly, on page 12 we detail the incredible donation we have received to fund the building of the new Centre for Research into Rare Disease in Children (3A).

The extraordinary gift of £60 million by Her Highness Sheikha Fatima bint Mubarak of Abu Dhabi will enable us to bring our academics and clinicians together in a state-of-the-art research and clinical facility by the beginning of 2018. The centre is one of our most tangible expressions of our ambition to become a research hospital – a theme I touched on in my blog last month – and I am left in no doubt that the 400 people based in the centre will succeed in driving the translation of research into better treatments and cures for our children and young people with lifelimiting and life-threatening rare diseases. What’s more, the discoveries taking place in the centre will benefit children and young people around the world.

I am pleased that we are also able to talk about how, in the area of education and training, we are reaching beyond our walls and sharing our specialist knowledge to drive improvements in care.

We are already the largest provider of specialist paediatric nursing in this country. Clinical and managerial staff come to GOSH from all over the world to experience first-hand how we work, particularly when treating complex conditions. We need to build on these foundations, and steps in this direction are demonstrated by the work described on page 15, which explains how we are developing a valuable programme of training in palliative care.

To reach out and provide training, not just within GOSH but in the wider paediatric community, is what GOSH should be doing. Only then can our experience and expertise benefit the largest number of children and young people.

Learning, Education and Development

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Noticeboard

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Features The energy to keep going We go behind the scenes to learn about the hospital’s Energy Centre

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A day in the life Sue Spiteri tells us about a typical day working as a Healthcare Assistant

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Rudy’s brain tumour Rudy’s dad Sam explains what happened when his son was diagnosed with a brain tumour

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A rare gift How a £60 million donation will create the world’s first centre dedicated to paediatric research into rare diseases

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The sense behind sensory rooms 16 We learn more about sensory rooms and how they help patients at Great Ormond Street Hospital Milk – guiding the way Dr Neil Shah and his team have developed national guidelines to help quickly recognise and treat cow’s milk allergy

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The copy deadline for the September edition is Wednesday 6 August. Please note that submitting articles does not guarantee a place in the next issue.

Submissions should be sent to publications@gosh.org Editor Sally Mavin, ext *643042 Email: sally.mavin@gosh.org Designer Sharon Leese, ext *643100 Contributors Mark McKenzie-Ray, Corinne Clarke and Alice Woodward

Printer Jigsaw Colour, www.jigsawcolour.co.uk Charity logo Great Ormond Street Hospital Children’s Charity.

Registered charity no. 235825.

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In the news UK and international media reported on Great Ormond Street Hospital’s (GOSH) receipt of a £60 million gift from Her Highness Sheikha Fatima bint Mubarak, wife of the late founder of the United Arab Emirates. The gift was reported by The Independent, London Evening Standard, BBC London News and UAE media. See page 12 for more.

This month’s social media highlights from Great Ormond Street Hospital’s (GOSH) Facebook and Twitter accounts.

Successful second visit to @GreatOrmondSt. What a lovely Ophthalmology team!

Thank you.

GOSH patient Megan Carter (pictured above) has become the first child in the UK to receive a new treatment that makes kidney transplantation possible in patients previously deemed ‘untransplantable’. The new treatment flushes patients’ blood of HLA antibodies. These antibodies, often produced during rejection of a previous organ transplant, would otherwise make it virtually impossible for a patient to receive a new organ transplant. Using the new blood-filtering technique, GOSH clinicians have managed to successfully provide Megan with a kidney transplant from her father, despite the two not being a match. Megan’s story was reported by BBC News online, The Sun and a range of Irish media.

Follow-up media coverage on Didier Montalvo, the Colombian boy who had a giant mole removed from his back by doctors at GOSH in 2012, looked at the research that is now being done to find a cure for the underlying rare skin condition, congenital melanocytic nevus (CMN). ITV This Morning, Sky News, LBC and The Huffington Post reported that, although Didier’s mole is starting to grow back, he is now involved in a collaborative treatment programme between GOSH and the Beatson Institute in Glasgow. Dr Veronica Kinsler, lead clinician in GOSH’s Dermatology department, said it was the first time they had been able to reverse CMN growth with medicine after birth. GOSH plastic surgeon Neil Bulstrode was also interviewed.

Following a GOSH-based study showing the potential for neonatal organ donation in the UK, the Mail Online reported that delegates at the British Medical Association’s annual representative meeting had backed a motion calling for UK guidance around neonatal organ donation to be brought into line with other western countries. The research at GOSH, which took place between 2006 and 2012, showed that just over half the infants who died in the hospital’s intensive care units could potentially have been organ donors if UK guidelines permitted.

Currently, the guidance restricts doctors from diagnosing brain stem death in infants under two months of age.

I’m at GOSH at the moment and have been totally amazed by the place. There are play areas everywhere, and play workers and volunteers bringing toys to the beds. Even free TV (we have to pay at our local hospital) with plenty of children’s TV. I know my son will be talking about GOSH for years to come and in a positive way.

My son will be coming to GOSH as soon as he is born.

I’m dreading it but hearing how nice everyone there is is making me feel so much better x We’ve been here two months and the staff (from cleaners to consultants) and facilities are absolutely fantastic. We as parents feel part of the team! @GreatOrmondSt Wonderful student nurse on Koala Ward helped my niece through her surgery today. Definitely knows her #6Cs. Thank you.

Join the conversation Facebook: facebook.com/ GreatOrmondSt Twitter: @GreatOrmondSt

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GO Create! artists in residence, 2014/15 be the opportunity to create new things, from comic books to dances, and to participate in exhibitions and performances.

GO Create! is looking for expressions of interest from wards or departments who would like to host one of this year’s creative residency projects.

Projects are planned in collaboration with the ward or department and tailored so that the activity and the artist successfully integrate into your service. Projects are managed by GO Create! and commitment in the form of a ‘key worker’ is required by the host ward/ department. This is an exciting opportunity for a ward or department to engage with the GO Create! programme and provide a creative experience for their patients.

This year we are offering y g two residencies:

The Tagore Centre The Tagore Centre celebrates the work of Nobel Prize winner Rabindranath Tagore, a Bengali poet. This creative residency will employ some of Tagore’s songs, poems and paintings to inspire new expressions. Drawing on the rich traditions of Indian art and philosophy, the residency will provide an opportunity to learn traditional and classical forms with artists from the Tagore Centre. There will also

The starting point will be the acclaimed play The Post Office, which tells the story of a young boy with an adventurous heart who is confined to a hospital bed while his spirit soars free. This play, told from a child’s point of view, is a story of purity, hope and imagination, which is untouched by the strictures of the adult world. Images from the story will be explored through music, puppets and visual art.

For more information on the Tagore Centre, please visit tagorecentre.org.uk

Rambert Dance Company Rambert Dance Company is the oldest dance company in the UK, founded by Polish émigré Marie Rambert in 1926.

This creative residency offers the opportunity for a ward or department to host a series of contemporary dance workshops led by Rambert’s experienced facilitators. Rambert is at the heart of contemporary dance in Britain with an international reputation for excellence, innovation and quality. The outreach department are experienced in working in hospitals and they are able to work with any level of mobility in your specialism. For more information, please visit rambert.org.uk If you think your ward or department has the enthusiasm to host either of these creative residencies, please email harsha.jadav@gosh.nhs.uk

by Friday 22 August 2014.

Interested parties will be invited to discuss the project with the GO Create! team before selection.

GO Create! is funded by Great Ormond Street Hospital Childrens Charity.

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The energy to keep going

The ‘green roof’ with the pipes taking hot and cold water to the Variety Club Building in the background

With its spacious wards and state-of-the-art operating theatres, the Morgan Stanley Clinical Building is an impressive sight. But tucked away in the bottom basement, top floor and roof of the Morgan Stanley Clinical Building is the hospital’s main Energy Centre, servicing a site that has the equivalent floor space of seven Tesco Extra superstores. Here, we take a look behind the scenes to find out how Great Ormond Street Hospital (GOSH) has the energy to keep going.

Water The hospital consumes around 280 cubic metres per day – the equivalent of 600 UK households.

Water is taken from the normal Thames Water facility at street level and stored for use in large tanks, which are renewed constantly to prevent deterioration of the water quality. The water taken directly into the hospital is then treated for legionella bacteria by passing it over silver and copper electrodes, and heated or cooled to the required temperatures for basic hospital needs.

The top of the Trust’s ‘minipower plant’ showing the heat recovery parts of the system

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Electricity The sheer quantity of electrical power needed every day at GOSH (equivalent to the annual electricity consumption of 23 UK households) would mean an enormous utility bill as a normal commercial user. As a result, GOSH needs a different approach, and has opted to partly generate its own power using a mini-power plant on the roof of the Morgan Stanley Clinical Building.

What about power cuts?

With so many critically ill children relying on stateof-the-art equipment, ensuring an uninterrupted electricity supply is vital. This can only be done using uninterrupted power supply (UPS) batteries, which are constantly charged and ready to kick in if even a microsecond of power drop is detected.

In the unlikely event of a main power cut, the batteries seamlessly take over for up to three hours, giving plenty of time for the hospital’s generators to pick up the demand. These

Brendan Rouse, Energy Manager

Clockwise from top: Inside the combined heat and power engine room – the engine is a gas-powered V20 engine and generates half of the Trust’s electricity needs; the pumps that deliver medical gases throughout the Morgan Stanley Clinical Building; just some of the hundreds of batteries that allow the Trust to operate fully if there is a blackout.

generators, if ever needed, would continue to power the whole hospital for at least 24 hours.

Heating, ventilation and air conditioning Providing adequate heating, ventilation and air conditioning to a hospital of this size is complicated, and must remain constant, healthy and economic.

Air taken from the outside is removed of dust and particles and is then cooled or heated depending on the outside temperature and humidity. It is then forced around the hospital in large, bright stainless steel ducts, some as big as a room.

As the used air is about to be discarded to the outside, a heat exchange unit uses the heat energy in the used air to pre-heat the fresh incoming air.

This effectively ‘free’ energy would otherwise be lost. What’s more, IT monitoring systems also test for other sources of free heat and energy, namely humans. The body heat provided by so many people using the hospital daily amounts to a considerable quantity, which is put back into powering the hospital.

Saving the environment GOSH is committed to sustainability, and in 2013/14 successfully reduced its carbon footprint by six per cent on the previous year. We are currently 22 per cent lower than this time last year and are on route to hit our target of a 15 per cent reduction by 2015. A great effort in a growing hospital.

Waste GOSH has implemented a wide range of waste and recycling procedures and awareness campaigns, and as a result was highly commended in the Waste Management category of the NHS Sustainability Day 2014 awards. In 2013/14, 200 tonnes of waste were recovered or recycled, equating to 16 per cent of the total waste produced. What’s more, offensive/ hygiene waste has been diverted from landfills, resulting in a 98 per cent landfill avoidance rate.

New mixed waste recycling bins and signage have been implemented across the Trust. This will be extended with the removal of desk-side bins and a move to centralised waste points.

What you can do 1. Recycle! Mixed recycling bins are widely available around the Trust. Recycle all non-confidential paper, hand towels, cardboard, cans, plastics and clean glass.

2. Turn off lights in unused meeting rooms.

3. Switch off unused computers, monitors and other equipment at night.

4. When using a kettle, only boil the amount of water you need.

5. Keep windows closed in air-conditioned areas.

For more information on GOSH’s use of energy, contact Brendan Rouse, Energy Manager, at brendan.rouse@gosh.nhs.uk

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A day in the life of a Healthcare Assistant Sue Spiteri has worked at Great Ormond Street Hospital (GOSH) as a Healthcare Assistant (HCA) for almost 15 years.

She previously worked on Victoria Ward – the old renal ward in the Southwood Building – before it moved to Eagle Ward in the Morgan Stanley Clinical Building, the first part of the Mittal Children’s Medical Centre, in June 2012.

An early start “I get up at 5.30am and leave my house at 6.30am.

I live in Islington, so it’s only a 20-minute journey. In the summer months I walk into work and take the bus home. I get into work for around 7am, change into my uniform, grab a cup of coffee and wait for the handover. If the girls on the Ward should need any help in the meantime, they know I’m in here and can give me a call.”

A day on the Ward “At 7.45am we have our handover. On a patient care day, if the patient is on dialysis, I’ll disconnect them from the machine first thing in the morning, weigh them and do their observations every four hours. If there are any dressings that need redoing, I’ll replace those. I’ll check to make sure the environment around the Ward is clean and make a mental note of any orders that need topping up. I have an office day once a month, and that’s basically to catch up on any ordering that might have been missed.

Sue and Trish setting up a patient’s dialysis machine

“I also set up the dialysis machines for the patients, and ensure they’re on overnight therapy by 6–7pm

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so that the night staff don’t have to worry about connecting the patient to dialysis.

“We have huddles during the day, where all the nurses and HCAs get together at the station, and the nurse in charge informs us of what’s going on with all the patients.”

Taking the lead “I’m the lead on the Band 4 project, which has been running since last year. Mark Goninon, Head of Nursing for Medicine, Diagnostic and Therapeutic Services, decided that he wanted all the Band 4s to meet up once a month to ensure that we’re all working to the gold standard, which means meeting the basic nursing care.

“Last year, I arranged teaching sessions for the HCAs for the first Wednesday of every month, but from January to June 2014 we were active on each ward, using a ward audit to identify problem areas. For example, staff on Kingfisher Ward were concerned about a large, cluttered cupboard that they used for certain stocks. We all went in, got the Moving and Handling team involved, cleaned up the area, and now it’s used just for the stores. It’s those jobs you can’t do every day and creating the opportunity to do them.

“I train other HCAs on Eagle Ward, and I support the senior house officers by performing phlebotomies (making an incision in a vein using a needle) and cannulas (inserting a small tube into the body, containing a needle to remove fluid). Part of my role also means ensuring that infection control is adhered to on the wards.”

A rewarding role “Trish has been my Practice Educator for the 15 years I’ve been at GOSH. We’re very close: any problems, I can just go to her, as I can with the other sisters on the Ward. She’s helped me progress from coming in with no qualifications – other than being a mother with four children – to getting to where I am today.

“Trish nominated me for an award for care and compassion at the HCA Excellence in Practice Awards because of my work on the Band 4 project – I was very shocked! My colleague Sarah Ordinaire, Assistant Practitioner (AP) in theatres also received an award, for developing her competencies and becoming the first AP at GOSH. We went to Middlesex College to collect them, and we had a lovely day there.

“I love the patient care – being involved with the patients and with the parents, you get to know the families so well. You do get short-term patients in Eagle Ward, but the majority are long-term. I’m quite vocal in my role, and I think it comes with the passion. I’ve got grandchildren, and I feel that all the children in the hospital should be treated and cared for as you would expect for your own child or grandchild. nsplant Games several “I went to the Transplant eally enjoyed that – years ago, and I really I was very proud of the children als. Seeing them getting their medals. go from being so unwell to competing is so lovely.” vely.”

Going home nd 8.30pm “I leave work around er and and unwind, shower go to bed – I don’t or have much time for anything else! My shifts are set, so I n, have three days on, three days off, so I’m n lucky because I can plan around that.

On my days off, I have my children and grandchildren nd to catch up with and g plenty of shopping and gardening.”

Amy and Sue on Eagle Ward

Amy Leonard is a Practice Educator for clinical Bands 2–4 within the Trust. She tells us about the latest development with the inhouse education programme for HCAs. “This is an exciting time for HCA education.

Working alongside London South Bank University, the Trust has designed and created the University Certificate of Competence in Principles of Children’s and Young People’s Healthcare (PCC). This course builds on our previous HCA course, aiming to standardise the education of HCAs within the Trust and to meet the recommendations put forward by the Francis Report and Cavendish Report.

“The PCC offers HCAs the opportunity to develop knowledge and skills in the classroom and clinical environment. It combines the benefit of learning in the workplace with the academic theory of an accredited programme.

The PCC runs for 10 months with students attending 15 study days. Successful students will receive a University Certificate, which is a Level 3 award.

“My role as course director of the PCC involves the day-to-day running and management of the course, as well as running classroombased teaching sessions. As Practice Educator for Bands 2–4, I work clinically across the Trust, providing clinical teaching, support and

mentoring for HCAs in practice.”

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Rudy’s brain tumourr

Sam, father of Rudy, describes the moment doctors told him his son had a brain tumour, before being referred to Great Ormond Street Hospital (GOSH).

Rudy with his dad Sam

“Rudy was five years old when he suddenly started being sick for no apparent reason. Whatever food we gave him he would throw back up, so we took him to our local GP who suspected there might be a problem with his stomach.

“For the next five months, Rudy didn’t eat very much and had no energy. The spells of sickness became more frequent and lasted for longer. On particularly bad days Rudy would throw up six times a day. This got progressively worse until Rudy couldn’t attend school anymore, which was really hard because he missed his friends. As well as nausea, we noticed that Rudy had started rolling his head and slapping his feet as he walked – he looked like he was in a lot of discomfort. Rudy had lost the cheeky and charming character that we knew and loved.”

A worrying time “After a particularly harrowing holiday in Cornwall, in which Rudy didn’t eat for three days, we sat down

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and decided that enough was enough. We saw a private consultant paediatrician, who asked us to diarise Rudy’s symptoms and suggested a possible diagnosis called cyclical vomiting syndrome.

“However, after watching video footage of Rudy’s unbalanced walking, the consultant instructed us to pack a bag and go straight to the A&E department at Chelsea and Westminster Hospital, where they wanted to do a scan of Rudy’s brain. As his dad it was so scary. We’d always been concerned about Rudy’s stomach and now they were talking about his brain. I didn’t understand where this was coming from, but with Rudy getting increasingly worse I was happy that we were at least moving forward.”

The diagnosis “My heart sank as they explained that Rudy had a sizable tumour and that this was stopping the flow of cerebral spinal fluid to his brain. They said we needed to go straight to GOSH for an operation to release

His condition worsened and Rudy was unable to feel the right side of his body. A scan revealed a blood clot had formed in his brain, which was almost the same size as the tumour and, during surgery, a lot of air had entered his brain. Mr Aquilina operated once again to release the air and remove the blood clot.”

Recovery “The following days remained worrying as Rudy’s recovery was slow and variable. One week later though, we had our first good day with no headache, temperature or vomiting – Rudy was on the up at last.”

the pressure building up in his brain. I’d always associated the hospital with really sick children, so I felt incredibly scared.”

Coming to GOSH “We arrived at GOSH and went to Koala Ward, the neurosciences ward, where we met the most reassuring and calm team of staff. It felt like one of their jobs was to look after the parents as much as it was to look after the children. Our surgeon, Mr Kristian Aquilina, spent time explaining what was going to happen next. He understood what a shock it was to hear all this new information.”

Starting treatment “Rudy had his first operation the next day. The doctors released the pressure in his brain and took a sample of the tumour for examination.

Tests revealed that Rudy’s eyes were in a very bad way and Consultant Ophthalmologist Mr Richard Bowman explained that if the tumour had been left any longer, Rudy’s vision would have been compromised. The seriousness of his condition was just setting in.”

Surgery “Finally, after 10 days, we were told that Rudy had a rare kind of benign brain tumour called pilocytic astrocytoma. Previously, chemotherapy had been mentioned as a treatment option, but now we were told that Rudy needed to have a risky operation to remove the tumour, which they believed was growing on top of his spinal cord. Due to the awkward position of the tumour, surgery had to be performed with Rudy sitting upright and the surgeon standing behind him.”

A worrying time “The operation took a nerve-racking six-and-a-half hours. Afterwards, there were a few complications and Rudy had to stay in recovery for quite a while.”

Life on the ward “During Rudy’s recovery, the nurses on Koala Ward were fantastic. They all fell in love with Rudy and looked after him as if he was their own. I’d frequently find the nurses dancing around Rudy’s bed and making him laugh. Whether it was the volunteers that played with Rudy so I had time to talk to the consultants, Mr Aquilina popping in on his weekend off or Syed, the cleaner, who helped me change Rudy’s sheets, everybody worked together to make Rudy better. I’ve counted over 75 people who helped Rudy in one way or another, and I can’t thank each of them enough.”

Thankful “The future looks good for Rudy. Our consultant recently told us that we don’t need to go back to hospital for another six months, which is a great boost. Children are the centre of everything GOSH does. The best is normal for them, and yet they still want to do better. It’s the most humbling place I have ever been in my entire life. Without them Rudy wouldn’t be here today.”

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A rare gift In July, Great Ormond Street Hospital Children’s Charity announced that a donation of £60 million had been made by Her Highness Sheikha Fatima bint Mubarak, the wife of the late Sheikh Zayed bin Sultan Al Nahyan, founder of the United Arab Emirates.

Her Excellency Professor Maha Barakat, representing Her Highness Sheikha Fatima bint Mubarak with Jade, a 15-year -old cardiac patient

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Her Excellency Professor Maha Barakat, representing Her Highness Sheikha Fatima bint Mubarak, meets families in the International and Private Patients division

What will the money be used for?

The money will be used to build the Centre for Research into Rare Disease in Children, the world’s first centre dedicated to paediatric research into rare diseases. This partnership between Great Ormond Street Hospital (GOSH), University College London (UCL) and Great Ormond Street Hospital Children’s Charity is set to bring hundreds of clinicians and researchers together to see patients and access state-of-the-art laboratory facilities under one roof.

It will also provide much-needed extra outpatients capacity when it opens in 2018.

“The most important work that we can undertake as a global society is to improve the health of future generations so that communities can thrive and grow.”

The centre will be built on a plot of land on Guilford Street. The award-winning architects Stanton Williams are working with the clinical and academic staff to create a high-quality building with outstanding facilities. The first phase of the public consultation process is currently underway for the design, with the centre expected to open in 2018.

It is anticipated that the centre will house approximately 400 academics and clinical staff and feature more than 150 laboratory bench positions. The outpatients’ facility will accommodate 48 clinical staff, and 140 patients with accompanying family members.

Why is the centre needed?

Many of the children treated at GOSH have rare diseases, and nearly one-third of the children affected will not make it to their fifth birthday.

We hope this centre will enable GOSH and the UCL Institute of Child Health to work together even more closely to translate ground-breaking research into better treatments and cures for these children.

Has this donation funded the entire centre?

The total cost of the centre is expected to be £90 million. In addition to this gift of £60 million, the full cost has been met through £20 million of fundraising income from Great Ormond Street Hospital Children’s Charity and a £10 million grant from the Higher Education Funding Council for England’s Research Partnership Investment Fund.

Why was the donation made?

Her Highness Sheikha Fatima bint Mubarak’s generous gift is in recognition of GOSH’s unique position to

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Her Excellency Professor Maha Barakat, representing Her Highness Sheikha Fatima bint Mubarak, with Tessa Blackstone, Chairman of GOSH

advance treatments and cures in rare diseases. It builds on the legacy of her late husband who had an active interest in global issues affecting the wellbeing of children. It is also given in gratitude to the hospital for the pioneering treatments it has provided to children from around the world, including those from the UAE. About Her Highness Sheikha Fatima bint Mubarak Her Highness Sheikha Fatima bint Mubarak is the wife of the Founder and the First President of the United Arab Emirates, the late Sheikh Zayed bin Sultan Al Nahyan. Known as the ‘Mother of the Nation’, Her Highness Sheikha Fatima is recognised globally for her support of charitable work and humanitarian projects.

“We must form collaborative partnerships that have the potential to benefit all children. We are honoured to support the mission and work of Great Ormond Street Hospital.”

Her Highness is a leading figure in supporting initiatives and projects to empower women

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locally, regionally and internationally. Her Highness Sheikha Fatima is also known for her focus on family and children.

Her Highness Sheikha Fatima bint Mubarak said: “The most important work that we can undertake as a global society is to improve the health of future generations so that communities can thrive and grow. To reach this goal, we must form collaborative partnerships that have the potential to benefit all children. We are honoured to support the mission and work of Great Ormond Street Hospital.”

What does this mean for the charity?

As the charity was fundraising to build the facility, receiving such a significant donation means that the charity can now concentrate its fundraising efforts on other projects the hospital desperately needs, but otherwise might not have been able to do. These include looking at providing extra parent and family accommodation and equipping more operating theatres. Both of these projects are absolutely vital as patient numbers continue to grow. The charity will also be able to look at supporting the upgrade of essential infrastructure, such as imaging equipment.

Essential training in paediatric palliative care Paediatric palliative care is a relatively new discipline where clinical practice has forged ahead of education and learning. Now, Great Ormond Street Hospital (GOSH) is leading the way in offering accessible education and training to nurses who provide end-of-life care to children in hospital and community settings.

Julie Bayliss, Consultant Nurse Palliative Care and Cancer Lead Nurse at The Louis Dundas Centre for Children’s Palliative Care, is heading up the development of an exciting new three-day Foundation in Paediatric Palliative Care programme. Its aim is to develop the knowledge and skills of nurses caring for children and young people with life-limiting and life-threatening conditions. By equipping nurses to deliver the best possible palliative care, GOSH hopes to improve the experience of children and their families.

Since July 2013, more than 120 nurses have taken part in the Foundation in Paediatric Palliative Care programme. Results of an online survey completed by participants both before and after the courses have shown a significant increase in learners’ knowledge, skills and confidence in all areas of the practice.

GOSH and Children’s Hospices Across London made a successful bid for funding to education and training organisation Health Education North Central and East London. As a result, the Foundation in Paediatric Palliative Care programme has since been rolled out to both nurses and GPs. Working in partnership with Cat Oxley, Learning Innovations Lead in the GOSH Online Learning and Development team (GOLD), an innovative and efficient digital learning course is being developed, which will allow healthcare professionals to access training both in person and online.

Speaking about the Foundation in Paediatric Palliative Care programme, Ian Green, Project Lead for Children’s Hospices Across London, said: “Recent research has indicated that there are over 7,000 children and young people with life-limiting conditions living in Greater London who require care and support from GPs at different stages in their lives.”

GPs who have already completed the training answered a similar questionnaire to nurses before and after the course, with encouraging results. Before the teaching, when asked “how confident and competent do you feel in breaking bad news to children?” GPs were scoring themselves two or three out of 10, but after the teaching they were scoring themselves eight and nine.

Julie Bayliss said: “The Foundation in Paediatric Palliative Care programme has demonstrated an essential need for nurses and GPs to build their knowledge, skills and confidence in caring for babies, children and young people with lifethreatening and life-limiting conditions and their families.”

The next Foundation in Paediatric Palliative Care programme will take place in October 2014. For more details, visit goshgold.org

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The sense behind sensory rooms

Chloe enjoys the Koala Ward sensory room, which was supported by the Joely Bear Appeal

Sensory rooms were first recognised as having positive effects on people with learning disabilities in the 1960s. The theory soon developed, and these settings are now acknowledged as beneficial to a wide range of people, including children, and can aid development. Here, we find out about the vital role sensory rooms play for patients and their families at Great Ormond Street Hospital (GOSH).

A sensory room is an environment designed to stimulate the senses through the use of light, colour, sound and visual effects. “It’s a room that has special lighting, sensory toys, mats and space to play and relax,” says Heidi Furr, Clinical Specialist Occupational Therapist on Koala Ward. “They’re used to give a child a peaceful and calm environment, but they’re also used to stimulate the senses with some children. The sensory room can be used to aid a child’s communication, concentration, alertness, calmness, co-ordination, social and emotional skills and, most importantly, it’s fun!”

Heidi Furr

The rooms feature a variety of specialist equipment, including bubble tubes, multimedia projectors and fibre-optics, as well as elements from playrooms, such as a cushioned play area and smaller toys. “The rooms are used to try and help children with their

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normal functions, and to help them understand their environment,” explains Sacha Morris, Play Specialist on Sky Ward. “The sensory room can be used to calm children before surgery, as a quiet room, as a cinema room or as a disco party room. It depends on the needs of the child,” says Sacha.

Sacha Morris

Sensory rooms are also used to engage patients with orthopaedic and neurological disorders, as a way to evaluate functional development. “The occupational therapists and physiotherapists can often assess a young child in the room, making observations of their motor development, movement patterns, sensory skills, communication, and problem solving, rather than a formalised assessment at the bedside,” explains Heidi.

Bubble tubes in the Sky Ward sensory room

Fibre optics in the Sky Ward sensory room

“The room is available to all of the children, but tends to be used particularly by the under fours. They’re used by the children for many different reasons. For example, a child may just need to come to relax and get settled after a procedure, such as being cannulated, or they could use it before they go down to theatre for a calming distraction,” says Heidi.

The therapeutic nature of sensory rooms can also be extended to patients who cannot leave their bed, with mobile equipment that can be taken to the bedside. “Our fibre-optics and projectors are portable, and we have smaller lights and bells that we can take to the bedside as well,” says Sacha. “The fibreoptics, which you can drape over you, are touchsensitive, so you can stimulate and hold attention.

They’re very visual and tactile.”

craniofacial specialties use the Koala Ward sensory room. “It was really lovely to see one of my patients, a little boy with a very complex neurosurgical history, using the room, looking at the lights and getting visibly excited about the colours changing in the bubble tube,” recalls Heidi.

The rooms are available to book, and other wards are invited to use them. “It’s available for everybody to get as much use as possible,” explains Sacha.

As well as serving as a therapy room and playroom for children at the hospital, they are often used for children who have multiple disabilities, where sensory perception may be one of their only communication tools. Sacha explains: “It increases relaxation and provides some fun and enjoyment for them so that you don’t just have to communicate with language, you can use visual stimulation as well.”

Krishna enjoys making music in the Koala Ward sensory room

Multi-sensory environments have been recognised as beneficial to neurology patients with a wide range of conditions, ranging from memory dysfunction to speech problems.

Children from the neurology, neurosurgery and

Talking ng to... to Jessica, mum of six-month-old Nollie “The sensory room is nice and relaxing. It’s good for the children because it’s calming. It helps de-stress them and makes them feel a bit better. It also relaxes the parents. Nollie can’t move her legs very well, but she likes to sit and try to grab the fish in the bubble tube, which changes colour. There’s also mirrors and lights. She’s quite nosey and likes to look at different things. She loves it in there!”

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Milk – guiding the way Cow’s milk allergy (CMA) is a common food allergy among children in the UK. Great Ormond Street Hospital Consultant Paediatric Gastroenterologist Dr Neil Shah was part of a team that developed national guidelines to help quickly recognise and treat the allergy, improving the lives of young children and their families.

Estimated to affect two to five per cent of children in the UK, CMA usually develops within the first six months of a child’s life. A reaction to cow’s milk can appear within minutes of feeding (severe) or after a few days (mild to moderate). The severity of the allergy determines how a child is diagnosed.

“Children with a severe reaction to cow’s milk will immediately begin to show symptoms, such as rashes or swelling, and experience breathing difficulties. This type of milk allergy is life-threatening and can usually be confirmed using a quick and simple skin prick or blood test,” explains Dr Shah.

“The important thing for parents to know is that if it is diagnosed quickly, children can go on to lead normal, healthy lives.”

The milder, but more prevalent, form of CMA that affects the gut can be more difficult to diagnose.

Children can experience anything from vomiting, reflux diarrhoea and constipation, to skin rashes, persistent crying or colic. Given that these symptoms are common in a whole host of health conditions in infants, along with the delayed nature of the reaction (often as late as 72 hours after feeding), mild or moderate CMA is more complex to identify.

“Cow’s milk allergy can significantly affect a family’s everyday life. Watching your child in discomfort and not knowing why is distressing for parents. Going out to a restaurant or a playgroup can quickly become a stressful experience. The important thing for parents to know is that if it is diagnosed quickly, children can go on to lead normal, healthy lives,” says Dr Shah.

In 2011, the National Institute for Health and Clinical Excellence (NICE) published clinical guidelines for GPs, dietitians, nurses and other community-based healthcare professionals on how to diagnose food allergies in young children. What was clear from the guidelines was that there is a need to extend this into more practical guidance for CMA.

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Dr Neil Shah, Consultant Paediatric Gastroenterologist

At the same time, recent evidence indicated significant under-diagnosis, delayed diagnosis and incorrect diagnosis of CMA. “If a child first shows symptoms at three months but diagnosis takes place three-and-a-half months later, you fall into the window when a child is being weaned.

This is a fundamental time in a child’s life and has huge implications if the allergy is not picked up quickly. It was clear there was significant room for improvement in the identification and management of CMA in the UK,” says Dr Shah.

Keen to tackle this problem, Dr Shah joined healthcare professionals and other doctors from across the UK. The group consisted of an allergy specialist dietitian, a consultant paediatric allergist, a general paediatrician and a GP. “Working as a multidisciplinary team was essential in pooling everyone’s skill and expertise,” emphasises Dr Shah.

The group set about developing practical guidelines for mild CMA to complement the NICE food allergy guidelines. The aim was to develop a complete package that aimed to improve diagnosis, provide better management for the allergy and give clear guidance on how to re-introduce foods into a child’s

“This is the first set of CMA guidelines that are truly aiming to assess impact. We would like to look at long-term impacts on growth and wellbeing of children as a result of earlier diagnosis. At the same time we would also assess improvements in aspects of everyday family life.”

“This is the first set of CMA guidelines that are truly aiming to assess impact.”

Dr Shah is quick to highlight the importance of the post-publication effort. He adds: “The publication of the guidelines is just the first stage. The key now is to translate this into real-life practice and improve the diagnosis and management of children with CMA.”

diet. The group undertook a careful review of all current milk allergy guidelines published in the last five years, as well as the NICE guidelines. They also drew on their own experiences of children under their care. Their efforts culminated in the publication of The Milk Allergy in Primary Care Guidelines in 2013.

“The guidelines are carefully designed to help GPs and other primary care providers recognise all forms of CMA and to put in place the most effective management for children with mild forms of the allergy. They take into consideration the busy nature of GP and health visitor practices and have been developed to be used in under five minutes,” explains Dr Shah. The importance of the guidelines led to them being featured on the front cover of The BMJ (formerly the British Medical Journal) and in the British Journal of General Practitioners, vitally raising awareness among professionals who will use the guidelines.

To increase awareness of the guidelines, the team are actively disseminating them through various channels. Dr Trevor Brown, a Consultant Paediatric Allergist, continues to work closely with GPs in the Northern Ireland group, while Dr Shah is running national teaching courses through the Academy of Paediatric Gastroenterology. At the same time, the team continue to keep in mind the time constraints of those involved in primary care and so are using online tools such as YouTube as another quick and readily deliverable portal for publicising the guidelines.

Reflecting on the wider impact of the team’s efforts, Dr Shah adds: “If we can prove these guidelines allow children and their families with CMA to lead fulfilling lives, we will be in a better position to implement this across the UK.”

In May and June 2013, the guidelines were trialled across Northern Ireland by a group of 1,500 GPs who used them to treat babies and children suspected of having CMA. “Within the next year we will know the impact these guidelines are having, but we already have early evidence showing a significant reduction in prescribing unnecessary medication and inappropriate formulas. For example, there has been a dramatic reduction in prescribing colic relief formulas, such as Infacol, as people begin to correctly recognise CMA,” says Dr Shah.

The acid test, though, lies in measuring improvements in the quality of life for children and their families.

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GOSH noticeboard Annual General Meeting and Annual Members’ Meeting Foundation Trust Staff members are invited to the Annual General Meeting (AGM) and Annual Members’ Meeting.

11 SEPTEMBER

Includes a presentation from Professor Andrew Taylor, Divisional Director for Cardiorespiratory Services on Real-time reporting of surgical results – transparency in practice

registration from 5pm 5.30–6.30pm followed by a reception The Kennedy Lecture Theatre UCL Institute of Child Health, 30 Guilford Street, London WC1N 1EH

The purpose of the meeting is to receive the Annual Report and Accounts and hear from the directors on the performance of the Trust in 2013/14. The Members’ Council will present its annual membership report and you can also hear about the forthcoming Members’ Council elections.

Annual Report and Accounts 2013/14

GEMS awards winners: May and June May

June

Individual award: Karen Kelly, Staff Nurse, Elephant Ward

Individual award: Carly Hadfield, Ward Sister, Kingfisher Ward

Team award: The Patient Advice and Liaison Service team

Team award: Safari Ward

Nominate someone for a GEMS award!

If you think an individual or team should get wider recognition, drop an email to staffrecognition@gosh.nhs.uk providing as much information as you can about why they’re a Great Ormond Street Hospital GEM.

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Free film show 11 AUGUST

Muppets Most Wanted (U)

Philomena (12A)

t u o b a d n a Out

8pm

6.15pm

Listen

UNTIL 13 SEPTEMBER

The BBC Proms Prices

Royal Albert Hall

See

vary

24–25 AUGUST

Notting Hill Carnival Notting Hill

Ground Floor Lecture Theatre, Weston House

Eat and drink Multi-faith festivals

Free

12–16 AUGUST

The Great British Beer Festival

4–5 AUGUST Tisha B’Av

£10

Olympia

Jewish

18 AUGUST Jamshedi Noruz

Do

THROUGHOUT AUGUST

Shenshai – Zoroastrian

Kids Week

23 AUGUST Khordad Sal

Various venues in London

Shenshai – Zoroastrian

Staff surgeries

Watch

Would you like to come and meet your staff councillor? If so we are running staff surgeries on the following date:

Free for children

UNTIL 24 AUGUST

Camden Fringe Various venues in Camden

Prices

vary

19 AUGUST 1-2pm Staff area – Lagoon Staff surgeries are the opportunity for staff to meet their representatives on the Members’ Council. Staff councillors are responsible for feeding back to the Trust, via the council, the views and ideas of Trust staff. This helps to inform the organisation’s strategies and plans.

However, staff councillors do not replace the function of the staff side unions.

Read A Girl Is a Half-formed Thing

by Eimear McBride Winner of the Bailey’s Women’s Prize for Fiction “Eimear McBride is that old-fashioned thing, a genius, in that she writes truth-spilling, uncompromising and brilliant prose.” Anne Enright, The Guardian

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Friends and Family Test results Staff Friends and Family Test Earlier this year, NHS England launched the Staff Friends and Family Test (FFT), which will take place in every NHS organisation three times a year.

Great Ormond Street Hospital (GOSH) ran the first Staff Friends and Family Test survey in June. Over 1,100 GOSH staff received an email asking them to respond to two questions, and nearly half responded.

The NHS has set a target score for each question.

GOSH staff scored us better than this target both as a place to be treated and as a place to work. Here’s how we did: Question

NHS target GOSH score

How likely are you to 67 per cent 96 per cent recommend this organisation to friends and family if they needed care or treatment?

How likely are you to recommend this organisation to friends and family as a place to work?

61 per cent 70 per cent

All the results will be published quarterly on the NHS England website, and we’ll be able to see how we compare to other hospitals. Over time, we’ll add a small number of other questions to help us track progress on things like embedding Our Always Values.

Thanks to everyone for taking the time to respond to the survey. The next staff FFT survey will start on 18 August, when another third of GOSH staff will be sent an email asking them for their views.

To find out more about the Staff FFT, go to the staff pages on GOSH Web.

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In the first three months of implementation, the FFT in numbers can be summarised as follows: In total, 740 completed feedback forms were returned by our families and patients in response to the FFT. This is a 23 per cent response rate, well above our target rate of 15 per cent.

Of these, 72 per cent of people said that they were “extremely likely” to recommend the ward they stayed on at GOSH to friends and family if they needed similar care or treatment.

Over 85 per cent of the comments have been categorised as positive. Areas that we can improve on have been identified.

All the results have been shared and discussed with relevant members of staff. Actions, based on feedback received, will be implemented where possible to ensure that we are continuously aiming to provide the best experience possible.

Inpatient Friends and Family Test

Thank you to all staff who have been involved so far and have given families and patients the chance to feedback their experiences.

April 2014 saw the launch of the FFT in inpatient areas. Before they leave the hospital, families of patients that stay one night or more now have the opportunity to say whether or not they would recommend GOSH to friends or family if they needed similar care or treatment.

For further information about the results of the inpatient FFT, please go to the nursing and patient experience page on GOSH Web. For more information about the FFT, please contact Charlie Magness, Project Manager, at charlotte.magness@gosh.nhs.uk

In brief

Last word

Mental health unit rated ‘excellent’

Alcohol

Great Ormond Street Hospital’s (GOSH) Mildred Creak Unit has been awarded an ‘excellent’ rating by the Quality Network for Inpatient CAMHS (Child and Adolescent Mental Health Services).

Whether it’s a sunny family barbecue or a bustling pub beer garden, many of us find ourselves drinking more alcohol in the summer months. But before you reach for another ice cold cider, fruity Pimms or crisp glass of wine, read these top tips to make sure you’re drinking responsibly.

Watch your units

The Quality Network for Inpatient CAMHS is a national accreditation and inspection programme led by the Royal College of Psychiatrists, which aims to demonstrate and improve the quality of inpatient child and adolescent psychiatric inpatient care. ‘Excellent’ is the highest level achievable in the accreditation.

The assessment took into account questionnaires and in-depth interviews with inpatients, family members and staff, and an inspection of the Unit and services on offer.

The Mildred Creak Unit is a highly specialised therapeutic environment for children aged seven to 15 with complex and severe mental health problems.

Consultant Child and Adolescent Psychiatrist and Head of the Mildred Creak Unit, Dr Jon Goldin, said: “It is a great honour for the Mildred Creak Unit to be one of a small handful of units nationally to have been ‘accredited with excellence’.

It is a significant testament to the committed and skilled Mildred Creak Unit staff team, with whom it is a privilege to work.”

The NHS recommends a maximum of 3–4 units of alcohol a day for men and 2–3 units a day for women. But what does this mean?

One standard (175ml) glass of wine (ABV 12 per cent) – 2.1 units One large (250ml) glass of wine (ABV 12 per cent) – 3 units One pint of ABV 3.6 per cent lager, beer or cider – 2 units One 330ml bottle of ABV 5 per cent lager, beer or cider – 1.7 units Single small (25ml) shot of spirits (eg gin, rum, vodka) – 1 unit How does alcohol affect your health?

Sleep: although alcohol may help you fall asleep quicker, it also prevents you from sleeping deeply, which is vital for your body to restore itself both physically and mentally.

Mood: excessive drinking can lead to low mood and depression. If you’re already feeling anxious or sad, avoid drinking alcohol.

Skin: alcohol, along with caffeinated and fizzy drinks, dehydrates your skin, and also deprives it of vital vitamins and nutrients, making it appear dull. Alcohol consumption may also exacerbate flare-ups of rosacea and psoriasis.

Weight: alcoholic drinks consist of ‘empty calories’, which provide no nutritional benefit. A 175ml glass of wine contains around 126 calories, while a pint of beer contains around 170 calories. Regular drinking can cause you to pile on the pounds.

Tips for cutting down Alternate: drinking a soft drink in between alcoholic drinks will keep you hydrated, and will also save you money.

Take a break: avoiding alcohol during the week will keep you more alert, improve concentration and help you sleep better.

Make it smaller: instead of ordering a large glass of wine or a pint of beer, why not order a smaller glass or a bottle instead?

Set your limits: decide in advance how much you plan to drink (or how much money you’re going to spend) and stick to it. It will also help you pace yourself.

For more information, visit drinkaware.co.uk For confidential advice, information and counselling, call Care first on freephone 0800 174 319, available to staff 24 hours a day, seven days a week.

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Bill had 13 operations before his 10th birthday. Now he’s holding a bake sale.

Help children like Bill and raise some dough with a bake sale.

Bake it Better week 13–19 October 2014 Register your interest and get your free Bake it Better fundraising pack

www.bakeitbetter.org

Bake it Better ™

Great Ormond Street Hospital Children’s Charity. Registered charity no. 235825.