Generations

News for the members and communities of Liverpool Women’s

Spring 2015

Dedicated to you Dedicated to working together Dedicated to patients and their families Dedicated to research and innovation Dedicated to making a difference Dedicated to you Dedicated to working together Dedicated to patients and their issue Dedicated to research and innovation Dedicated to making a difference families 18 Dedicated to you Dedicated to working together Dedicated to patients and their families Dedicated to research and innovation Dedicated to making a difference Dedicated to you Dedicated to working together Dedicated to patients and their

Generations enerat ns

Hero Royal Marine who survived horrific injuries becomes a proud dad The Hewitt Fertility Centre at Liverpool Women’s Hospital has helped an Afghanistan veteran who suffered life-changing injuries in the notorious Helmand Province to become a father.

Fertility Centre. With baby Alba to give him new hope, Andy feels he is now starting another chapter in his life with Leonie, Payton, 8, and Brooke, 6.

Ex-Marine Commando Andy Grant, 26, who nearly died while serving in the conflict in Afghanistan celebrated the birth of his first child, daughter Alba, with partner Leonie at Liverpool Women’s in October. The joy of her arrival was something he thought he might never experience as he lay in hospital for three months after sustaining “We were in awe of shattering injuries Andy and all he had in the Helmand Province in been through whilst 2009, which led serving his country to his leg being and his tremendous amputated. He fight back.” – Charles was just 20.

leg amputated. But courageous Andy refused to give up on life. He and Leonie met when he offered to do a sponsored walk for SAAFA, the armed forces charity, for which Leonie worked.

That first walk was an important milestone on his road to recovery.

Since then Andy has kept on distance

walking and running with such determination that at the recent Invicta Games, he gained two gold medals and a bronze for track events.

Said Andy: “If someone had told me when I was first injured that I would one day win two gold medals and be cheered by 5000 people and get a standing ovation I wouldn’t have believed it. Nor that I would become a dad and be so happy with Leonie and our family.”

Doctors or managers of the future?

Find out why Liverpool Women’s was invaded by girls of all ages on their special day

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Andy’s life changed forever when he stepped on an explosive device while on patrol in the Kingsland, Clinical Director Because of Andy’s pitch dark. His life-changing injuries, femoral right artery the Liverpool couple was cut when he lost needed help in order to have a large chunk of his thigh a baby. Leonie has two children and he could have bled to death if a from a previous relationship who medic hadn’t acted quickly to stem Andy loves as his own but they the bleeding with a tourniquet. Andy wanted a child together. Their was airlifted to Camp Bastion with dream came true after successful 27 injuries and spent three months in IVF treatment at the Hewitt hospital, eventually having to have a

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Welcome to the world Ruby Baby Ruby Morgan is yet another “first” for Liverpool Women’s. Her birth ends years of heartache for her parents - thanks to the generous gesture of a stranger who became a family friend...

Read more on page 4 Andy and Leonie with baby Alba and (inset) with Payton, Brooke

Help us shape our services for future generations Liverpool has a long history of focussing on women’s health and we are very proud of the services we deliver to women and their families in Liverpool and beyond.

Healthcare should never stay still which is why we are looking at how we can further develop our services and continually improve our outcomes to ensure they are the best they can be for future generations.

Our Future Generations Strategy is looking at the options for our future. We want to protect and enhance those aspects of Liverpool Women’s that are most valued by our patients and our staff. This is what makes for a unique care experience for the women and families who use our services.

Over the last few months, we have been working hard with our clinicians

to look at the clinical quality standards for our services and we now need to plan how we can deliver those services in the future to meet the needs of our patients and their families.

We would like to invite members to become involved in this work so that they can help to shape the future for our services along with our staff and patients. Some members may like to get involved

in the detailed planning of specific services; others may wish to be part of a broader reference group that we share our ideas with at various stages in the planning process.

All members will receive information about the Strategy as it develops through the usual communications channels. If you are interested in getting involved please contact member@lwh.nhs.uk

Inside this edition: Trust’s vital role in new worldwide probe into genetic causes of rare diseases page 2 £1m grant will fund pioneering work into premature birth page 2 National accolade for service that is changing women’s lives page 4

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Follow us on Twitter: @LiverpoolWomens Web: www.liverpoolwomens.nhs.uk

Generations | Spring 2015 | Issue 18

Trust’s vital role in new worldwide probe into genetic causes of rare diseases In my first column as your new chairman, I would like to share some ideas with you about my hopes for Liverpool Women’s and my impressions so far. As a priority, I would like to see Liverpool Women’s become more involved with local communities - and I hope to have the full support of our governors and members to achieve that.

I have been in post now for several months and during that time I have been made to feel very welcome. I quickly realised that we have a really talented team of governors with diverse and rich experience and I am delighted to be working with them. I would love to see our members becoming more involved as well. Both governors and members act as a voice and can give us valuable feedback from local communities.

We also have a skilled board and as such we need to make sure that we listen to people and that we are getting information about what is happening on the wards in real time.

Staff, board members, governors and members – we are all in this together and my vision is that we can work as a team to ensure the quality of our services.

I have been impressed by the international impact that we are having on women’s health through our Centre for Better Births and in the work of the pioneering Hewitt Fertility Centre which is opening satellites in this country and is in advanced talks to establish centres abroad.

We are in a world where the public quite rightly wish to ensure that the healthcare treatment that they get is the best there is.

We need to make sure that we make the information they need about our services, clinicians and outstanding work in a wide range of specialities easily available and in a timely manner.

Like other NHS organisations, Liverpool Women’s faces challenging times and a period of transition. In such a climate we have to think harder about promoting our products and quality of our service.

Every taxi driver adores us, the trick now is to get our message out widely to others.

Edna Robinson Chairwoman

The research could ultimately transform diagnosis and result in better treatment for patients for generations to come.

The Trust is leading a partnership of Liverpool organisations which is one of eleven across the country selected

by NHS England to take part in the exciting project launched by Prime Minister, David Cameron, which could see the UK become a leader in the field of Genomic Scientist Medicine.

Angela Douglas

Entitled the Liverpool-based North West Coast NHS Genomic Medicine Centre the team, led by Liverpool Women’s Hospital alongside Liverpool Health Partners and involving several other NHS Trust from the region, will lead the way in delivering the three year ‘100,000 Genomes Project’.

Angela Douglas, Scientific Director for Genetics at Liverpool Women’s NHS Foundation Trust and Chair of the British Society for Genetic Medicine (BSGM), said: “The 100,000 Genome Project is welcomed by the BSGM as an exciting and unprecedented development that offers the UK the opportunity of being a leader in the field of Genomic Medicine.

The challenge of the project will be to embed its outcomes into routine health practice. The genetics community looks forward to working towards meeting that challenge.

The project has the potential to transform the future of healthcare.

It could improve the prediction and prevention of disease, enable new and more precise diagnostic tests,

and allow personalisation of drugs and other treatments to specific genetic variants.”

The initiative involves collecting and decoding 100,000 human genomes – complete sets of people’s genes – that will enable scientists and doctors to understand more about specific conditions.

Some participating patients will benefit because a conclusive diagnosis can be reached for a rare and inherited disease more quickly,

or because a treatment for cancer can be targeted at the particular genetic change that is present in the cancer.

It is anticipated that around 75,000 people will be involved in this project, which will include some patients with life threatening and debilitating disease. Recruitment has already begun and patients with diseases that the North West group has specialist services for may be asked if they wish to take part.

£1m grant will fund pioneering work into premature birth The charity Wellbeing of Women has awarded a £1m ‘Harris Research Grant’ to Liverpool Women’s Hospital and the University of Liverpool for vital research into premature birth This exciting development has been made possible through the personal generosity of Lord and Lady Harris of Peckham who have supported the women’s health charity for 30 years.

Centre will be an international hub for vital research

Their donation will enable the opening of a new Harris/ Wellbeing of Women Centre for Pre Term “We are delighted Birth Research that Wellbeing for all those at Liverpool of Women has Women’s pregnant Hospital. The recognised our work women who Centre led by experience or in this area with Professor Zarko are at risk of such a generous Alfirevic and preterm birth. donation.”

Professor Sue This will include Wray will work on an personalised interconnected research risk assessment programme to understand in early pregnancy, better what causes preterm birth and understanding the effectiveness of what can be done to prevent it. different preterm labour drugs and facilitating better and safer use of There will be a strong focus on developing personalised treatments preventative therapies.

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A Message from Trust Chair Edna Robinson

Liverpool Women’s NHS Foundation Trust is to play a vital role in a new world-leading project to tackle the genetic causes of cancer and rare diseases.

New crib for our neonates The AlFayed Charitable Foundation has donated £1,435 for a Variable Height Baby Crib in Liverpool Women’s Neonatal Unit which is the largest of its kind in the country and has featured in two recent TV documentaries highlighting its work for babies and families.

In giving the donation, Camilla Al Fayed, said:

The Centre will act as an international hub for research, and best clinical practice related to preterm birth and will provide cutting-edge research training.

Prof Zarko Alfirevic, Centre Director says: “We are delighted that Wellbeing of Women has recognised our work in this area with such a generous donation. We are confident that we can make important scientific advances that will reduce the burden of prematurity for families and society.”

“The gift of life is precious; new-born premature babies - like those cared for at the Neonatal Unit at Liverpool Women’s Hospital - need every chance they can to lead a normal life. By supporting the work of the Neonatal Unit, more vulnerable newborns can have access to specialist care and equipment that will improve their chances for a healthy life.”

Follow us on Twitter: @LiverpoolWomens Web: www.liverpoolwomens.nhs.uk

Issue 18 | Spring 2015 | Generations

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Dedicated to you Dedicated to working together Dedicated to patients and their families Dedicated to research and innovation Dedicated to making a difference Dedicated to you Dedicated to working together Dedicated to patients and their families Dedicated to research and innovation Dedicated to making a difference Dedicated to you Dedicated to working together Dedicated to patients and their

news ews

Be a voice for your community as a governor Would you like a new challenge, an important role in your community? Why not join the Trust’s Council of Governors? Governors play a vital role in shaping our future. They play an essential part in the success of the Trust. They provide a vital link between been Liverpool Women’s and the community - including our 11,000 members - by representing the public’s interest.

They are responsible for appointing the Chair and other Non-Executive Directors of the Board and deciding their remuneration and allowances.

They also appoint the Trust’s financial auditor, provide views to the Board in respect of forward plans, represent the interests of the Trust’s members and hold members of the Board to account. The following seats are available:

A Message from Trust Chief Executive Kathy Thomson

The girls spent the day with medics, scientists and many other staff learning about working in the NHS

Sisters Lydia and Charlotte Rowlands had a special reason to meet neonatal staff like Sonya Devine

Girl guides get busy learning about life at Liverpool Women’s To mark the worldwide celebration of the International Day of the Girl, the Trust held an Open Day for 140 Guides, Brownies and Rainbows.

Organised with the help of Guiding North West, the event gave the young visitors from all over Merseyside the opportunity to learn more about how women and babies are cared for at Liverpool Women’s. It was also aimed at raising their awareness about the wide variety of career opportunities available in the NHS.

The girls spent time with expert medics, scientists and career and education staff. Activities were arranged according to age with the girls visiting areas such as X-ray and UltraSound, Maternity, Reproductive medicine, Genetics and Infection Control.

The visit had special significance for

Cancer expert and consultant Jonathan Herod spent time with the girls

Central Liverpool (3 seats) North Liverpool (1 seat) Knowsley (1 seat) Could you meet the challenge?

Please see the Trust’s website at www.liverpoolwomens.nhs.uk for further details.

Woolton Girl Guide Lydia Rowlands, 11, who fought for life on the Neonatal Unit at Liverpool Women’s eleven years ago and returned for the first time, accompanied by her elder sister, Charlotte, 12 and her mother Tracey Rowlands.

Tracey of Woolton, said it was a very emotional experience. “Lydia was delivered at 24 weeks, weighing just over 2lb, after we both nearly died when I suffered placenta abrupta at 22 weeks. It was touch and go many times as to whether she would survive but the Neonatal staff were fantastic. Charlotte also owes her life to Liverpool Women’s.

I nearly miscarried her when I was six months pregnant and it was only medical procedure by my consultant, who kept me in the Women’s for three months, until she could be safely delivered, that saved her life.”

Trust wins UNICEF award

Our governors at work: One of new chairman Edna Robinson’s first events was to welcome girls from the Guiding Movement for our International Day of the Girl Event with governors Barbara Kerr (left) and Mary McDonald

The Trust has been awarded level three Baby Friendly status by UNICEF, making Liverpool Women’s the largest maternity hospital in Europe to be fully accredited for the award which reflects level of support for breast feeding. Said Dianne Brown, Director of Nursing and Midwifery: “This is great news for the hospital and the women and families that use our service. This is the result of successful team work between our infant feeding team, BAMBIS breast feeding peer support and our maternity teams.”

The international reputation of Liverpool Women’s is highlighted in this edition of Generations by the fact that we have been asked

by NHS England to lead the North West Group in the Government’s national 100,000 Genome Project.

Through this vital research into the causes of rare cancers and genetic diseases, we can help the UK become a world leader in this field. Our amazing and dedicated genetic teams are already changing outcomes for families with sometimes tragic genetic diseases and their expertise and contribution so far has clearly been recognised.

The fact that we have also received a £1million donation to establish a new research centre into the causes of prematurity underlines our reputation in this area as well.

Two lovely stories illustrate why our Hewitt Fertility Centre is so highly regarded in Europe for its work in helping more people become parents. They are people like brave Afghanistan veteran, Andy Grant, while on page four, you can read how cancer patient, Lynsey Morgan and husband Dan of South Wales have become parents thanks to our new surrogacy service.

No wonder I feel uplifted by stories like these. I hope they may persuade more members to be involved in what we do by becoming governors as outlined on this page - a position that makes you an important link between the Trust and your community.

As part of reaching out to local people, we were delighted to have 140 plus Guides, Brownies and Rainbows visit us for an Open Day. They gave us one of our most enjoyable days yet through their interest and enthusiasm. As always, I thank our staff, governors and volunteers who helped make this a huge success in addition to their usual dedication and hard work.

Kathryn Thomson Chief Executive

One Born Every Minute features the Women’s Members who follow the popular Channel 4 series ‘One Born Every Minute’ should be glued to their screens every Tuesday at 9pm. The new series has started and it was filmed at Liverpool Women’s.

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Follow us on Twitter: @LiverpoolWomens Web: www.liverpoolwomens.nhs.uk

Generations | Spring 2015 | Issue 18

How our surrogacy service works Liverpool Women’s Hewitt Fertility Centre has become one of few centres in the region to offer a surrogacy service. This is strictly regulated.

Patients seen so far include women unable to carry a pregnancy themselves, due to congenital or surgical lack of a uterus because of cancer treatment. Also women for whom a pregnancy would be dangerous because of health problems.

Patients are often referred to the Hewitt Centre from other areas by gynaecologists or GPs who know the service is not available in their own area.

The Surrogacy team includes Consultants, Andrew Drakely and Richard Russell who make the medical decisions; Fertility Sister Gill Hathaway who co-ordinates the treatment; Andrologist Amanda Hall; and Patricia Lambert, a specialist counsellor for all the parties involved who undergo extensive counselling before treatment starts, including the surrogate’s partner and her own children, if applicable.

The Hewitt Centre has details of non-profit organisations who can help intended parents and surrogates. It is illegal for a surrogate to be paid a fee in this country but her expenses can be covered.

Ruby Jay marks another ‘first’ for Hewitt Centre When Wirral mother Lois Woolley had her third child, a daughter Athena, unexpectedly three years ago, she felt truly blessed. Lois, 29, who already had two boys, was so moved by Athena’s arrival in October, 2011 that she decided to help another woman enjoy the same family happiness that she and her partner had by becoming a surrogate mother.

Her decision has changed the lives of Lynsey and Dan Morgan who, following treatment with Lois at the Hewitt Fertility Centre, now have a beautiful baby girl, Ruby Jay who was born at Liverpool Women’s on February 8, becoming

Surrogate Lois (left) with Lynsey

the Trust’s first “surrogate” birth.

Lynsey and Dan were with Lois as she gave birth to Ruby after a short natural birth, ending years of heartache during which Lynsey feared she and Dan would be childless after she had radical treatment for leukaemia. She was told it was unlikely she would ever have a child and after a lot of thought she and Dan decided to seek the help of a surrogate and made contact with Lois on a surrogacy website three years ago.

Since then the two families have been getting to know each other with Lynsey and Dan regularly travelling up from their South Wales home to meet up with Lois and her family. They all became firm friends and decided to go ahead.

Lynsey’s sister Kelly - who had already saved her life with a bone marrow transplant - had offered to donate her eggs. Following a successful IVF procedure at the Hewitt Fertility Centre last year, during which the eggs were fertilised with Dan’s sperm, surrogate Lois carried their baby - giving Lynsey and Dan the child they dreamed of.

“How can we ever thank her enough?” says Lynsey from South Wales. “Lois has given us the most precious thing in the world and there are no words to describe how grateful we are. She has

Jan retires after raising £2.5m for Newborn appeal - and Nadia arrives!

Famous sextuplets mum Jan Walton has stepped down as fundraising manager of Liverpool Women’s Hospital’s Newborn Appeal after nearly 20 years.

Jan Walton

During that time, she has raised £2.5 million to fund research and buy equipment for Liverpool Women’s Neonatal Unit.

Jan and her family became world famous after she gave birth to six daughters - the world’s only single sex sextuplets - 31 years ago in November 1983, But she now feels it is the right time to step down.

Jan said: “I’ve been doing the job 23 years and fundraising for the Neonatal unit since the moment the girls were born. It’s the right time to go now. I have loved the job and all the people I’ve met and I couldn’t be more grateful to all those who have helped me fundraise over the years” Jan has been helped by hundreds of grateful families and by an army of knitters who have raised thousands of pounds by knitting baby clothes for sale on Jan’s wellknown stalls in reception and in

Nadia Alasafaar

Liscard shopping centre.

Picking up the reins from Jan is Nadia Alasafaar, new Newborn Appeal Manager. Nadia has previously worked as a community fundraiser for the Roy Castle Lung Cancer Foundation.

Like Jan, Nadia will have a regular knitting stall in Liscard and hopes to sell the baby knitwear at other venues across the city. If you’d like to help with the Appeal in any way please get in touch with her at nadia.alsafaar@lwh.nhs.uk. Working part time with Nadia will be Sue McMullen who has been involved in the appeal for twenty years as a trustee and is now appeals assistant.

New home for emergency services Our Gynaecology Emergency and Early Pregnancy Unit has moved to a new centre on the ground floor of Liverpool Women’s. Sharon Owen, Emergency Department Manager said: “The team

are delighted with our new surroundings which are easily accessible for women at what can be a very anxious time and which allow our patients to be seen in total privacy. We also have space to accommodate all

the clinicians on duty.”

The award winning EPAU team sees patients between six and 12 weeks’ pregnant who may present with pain, bleeding and ectopic pregnancies.

done a fantastic thing for us.

We still can’t believe Ruby Jay is here. We are so grateful as well to everyone at the Hewitt Centre who made this possible for us.”

Said surrogate Lois: “I wanted to do something to help other couples and I am happy that I have achieved that.

Lynsey and Dan are lovely people and we have become close friends. I just wanted to give someone else that joy

Parents at last – Lynsey and Dan with Baby Ruby

of having a child. I can’t imagine what it must be like not be able to have that happiness. I have the same sort of feeling about Ruby that I would have for a friend or relative’s baby. This pregnancy has always belonged to Lynsey and Dan.”

National accolade for service that is changing women’s lives Liverpool Women’s is transforming patients’ lives through its Endometriosis Service which has now been granted full accreditation by the British Society for Gynaecological Endoscopy (BSGE). This recognises it as one the UK’s specialist centres where women can be diagnosed and helped with this debilitating and often painful condition.

The treatment has proved a life-changing experience for many patients. One wrote to the Trust to say it had resulted in a dramatic change in her quality of life. “My life is ten times better. I now have a life. I can’t thank you enough for being there for me and my family.”

The service is run by Consultant Gynaecologist Mr George Botros and Dr Dharani Hapangama with Specialist Nurse Denise Carter. Treatments include specialist advanced keyhole surgical intervention. The team is supported by consultant colleagues at the Royal Liverpool University Hospital. It has been running since May, 2014 and during that time 23 women with severe endometriosis have received surgery. The service provides dedicated specialist support, including a pain clinic, supported by a clinical psychologist. s lining the womb where the endometrial cell *Endometriosis is a condition s body. Each month these cell migrate to other parts of the g ldin bui , mb wo se in the react in the same way to tho bleeding. Unlike the and n dow ng aki bre n up and the ing a period, this dur d she cells in the womb that are omes trapped bec and blood has no way to escape omen and other in the pelvic area, lower abd ans such as the org e som g organs, even causin to the uterus. It bladder and bowel to stick condition that is a chronic and debilitating iods. It may causes painful or heavy per and bowel also lead to infertility, fatigue 1.5 million und and bladder problems. Aro g with the livin tly ren cur women in the UK are n and girls of me wo all ct affe condition which can of race or ethnicity. a childbearing age, regardless

Scooter club’s journey of thanks Twenty members of Hindley Stateside Scooter Club made the journey from Hindley to Liverpool Women’s on their scooters to hand over a cheque for £1,400 to fund the next piece of specialist equipment on the Neonatal Unit which cares for over 1,000 vulnerable babies a year.

They raised the money on behalf of their friend and fellow member, Matty Prendergast and his wife who sadly lost their baby but wanted to thank staff for their care and to help future premature babies survive.

Editor – Eileen Taylor. Designed & Published by Octagon Design & Marketing Ltd, Britannic Chambers, 8a Carlton Road, Worksop, Notts. S80 1PH Tel: 01909 478822