Little bliss issue 32 (Spring-Summer 2014) by Bliss, for babies born premature or sick

Littlebliss The little magazine for Bliss’ biggest supporters Issue 32 - Spring/Summer 2014 bliss.org.uk/littlebliss

Bliss is Prudential RideLondon Charity of the Year 2014

It’s not a game The very real costs of having a premature or sick baby

AND MORE: LOOK AT THEM NOW l GET YOUR BUGGY PUSH ON l THE BENEFITS OF VOLUNTEERING FOR BLISS l EPICURE: THE LONGEST NEONATAL STUDY IN THE WORLD l WORLD PREMATURITY DAY REVIEW

Thanks to you we’re achieving so much

here are two things that stand out in this edition of Little bliss – how important your support is to us and, secondly, how much we are achieving as a result of your support. As a charity, we rely so much on our fundraisers, donors and volunteers, whose support allows us to be there for the UK’s tiniest and sickest babies and their families. The following pages aren’t short of suggestions of how you can get involved with Bliss – from the cycling event of the year, Prudential RideLondon (p8), to our volunteering opportunities (p28) and our Bliss Buggy Pushes taking place up and down the country (p30). And you don’t have to look far to see how this support is allowing us to achieve

so much, as we strive to ensure that babies and their families receive the care that they need, when they need it. This issue’s special feature focuses on our Financial Hardship Report, which calls for better financial support for families of special care babies (p15). We also take a look at our involvement in EPICure, the longest running study into prematurity in the world which has improved the ongoing care and support for tens of thousands of premature babies across the globe (p26). And we look at the launch of BFFAS, our new scheme which will enable doctors and nurses to provide the highest levels of care in neonatal units across the country (p24). Thanks to you we are achieving so much for premature and sick babies, and their families, and with your continued support we can achieve so much more. Mark Gorman, Editor

Registered charity no. 1002973 Scottish registered charity SC040878

15-21 Special feature on the real costs to parents of having a premature or sick baby

4 See all the action from World Prematurity Day

2 Little bliss

24 How Bliss are improving the quality of care on neonatal units Spring/Summer 2014

On the cover...

About Bliss

8 Prudential RideLondon

Bliss ensures that more babies in the UK survive and have the best quality of life by:

Bliss are the Prudential RideLondon Charity of the Year 2014 – find out how this will support our Bliss Nurse programme here

In every issue... 4 News

• supporting parents and families • campaigning for improvements in neonatal care • promoting developments in care.

For a listening ear call our helpline 0500 618140

Comments about Little bliss? little@bliss.org.uk

All the latest news and updates from Bliss

Little bliss online bliss.org.uk/littlebliss

12 Look at them now

Noah and Archie’s journey from neonatal care to the present day

The Little bliss team Editor: Mark Gorman Design: Jess Milton, Ysabel Schonegeval, Joana Águas, INQ Design Contributors: Gemma Pritchard, Jenny Hulme, Mark Gorman Proofreading: Christine Cayley

28 Volunteering

How volunteering for Bliss can benefit you!

30 Thank you

Celebrating our amazing supporters

Features 8

Prudential RideLondon

Little bliss 2 Floor Chapter House 18-20 Crucifix Lane London SE1 3JW t 020 7378 1122 e little@bliss.org.uk bliss.org.uk

Bliss does not endorse any companies mentioned in this magazine and takes no responsibility for any action taken as a result of anyone reading this information.

Fulfill your potential and ride for Bliss

22 Mother’s and Father’s Day What these days mean to parents of special care babies

26 EPICure The world’s longest study into prematurity and its impact on babies

30 Get your Buggy Push on

Support premature and sick babies by taking part in a Buggy Push

Get in touch

Go online

Donate

Get involved

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News

ity Da y Wor ld Pr em at ur pu rp le to m ar k g in ild bu a s, lit up or e - or in Le ed n th e co un try w w do d an up rs Bl iss su pp or te

Bliss launches new resource for parents Bliss is pleased to announce our brand new publication Your special care baby - a guide for families has been launched and is available to parents and neonatal units free of charge. This booklet is written especially for parents and families of babies who were born a little early, or were born around their due date but who require some extra time in hospital. Unlike some of our

other advice booklets, it doesnâ&#x20AC;&#x2122;t include information about those babies who were born very early or have serious medical conditions - which could be overwhelming for parents whose baby will only spend a short time in neonatal care. It will be available on all neonatal units by May of this year. For more information:

go to bliss.org.uk or call 0500 618140

Pictured accepting the award is Blissâ&#x20AC;&#x2122; Family Support Manager, Carmel Bartley

Wo rld Pre ma tur ity Da y foc use d on the of im po rta nce ski n-t o-s kin wi th yo ur ba by. We as ke d pe op le to su bm it the ir

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Give a hug, 17 November 2013 17 November saw our wonderful supporters giving hugs and wearing purple up and down the country to mark World Prematurity Day. Across the globe, people were raising awareness of the 15 million babies born too soon worldwide each year by lighting buildings, wearing purple and raising vital funds to help premature babies. Now in its third year, World Prematurity Day is a day when Bliss joins up with other charities and organisations from around the world to call for actions to prevent premature birth and improve care for babies born at early gestations. This yearâ&#x20AC;&#x2122;s event focused on the importance of skin-to-skin Kangraroo Care to

babies in developing countries who may not have access to incubators that can regulate their temperature. With this theme in mind, we launched a competition to find the best photo of a hug. Thank you to everyone who sent in their wonderful hug pictures. Over 250 of you entered our competition to win an Angelcare AC1100 Digital Video, Movement and Sound Monitor worth ÂŁ249.99 and the very deserved winners were Elly, Joe and baby Cormac from Bristol. We also launched our Give a hug video and Impossible hug animation, which were watched and shared across social media by thousands of people.

World Prematurity Day 17 November

Other highlights included the Bliss Leeds Family Group illuminating the Leeds Arena in purple lights and hundreds of our supporters taking part in Little Lights Walks around the country, raising thousands of pounds for premature and sick babies. Whatever you did, thank you! We hope you had a great day and we hope you join us to mark World Prematurity Day this year on 17 November 2014.

sp ec ial hu g ph otos as Little bliss l Spring 2010 5 pa rt of a co mp eti tio n - the wi nn ers we re Elly, Joe an d ba by Co rm ac (fa r rig ht)

News Bliss appointed Prudential RideLondon Charity of the Year for 2014 Bliss is thrilled to have been appointed as the first ever Prudential RideLondon Charity of the Year. More than 160 charities applied to become Charity of the Year of the Mayor of London’s annual festival of cycling. Six were shortlisted to present plans to a selection panel, with Bliss coming out on top. We will receive a wide-ranging package of benefits and support to assist

BBC Lifeline appeal Tune in to BBC one on Sunday 18 May for Bliss’ BBC Lifeline appeal. We’ll be highlighting our vital work including celebrating our wonderful volunteers and you’ll hear about the amazing work of our Bliss Nurses and how they’ve supported families at the most traumatic and difficult time in their lives. Our appeal will run for 28 days so look out for it on BBC two and the Community channel during May and June.

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our fundraising efforts around the event. Mayor of London, Boris Johnson, said: “Prudential RideLondon isn’t just a fantastic festival of cycling, it’s also an event that’s raised millions for charity. As Charity of the Year for 2014, Bliss will receive 100 guaranteed places, which I’m sure will help to provide a real boost for what is a very worthy cause indeed.” Andy Cole, Chief Executive, Bliss, said: “We are absolutely thrilled to have been chosen as the first Prudential RideLondon Charity of the Year.

The money raised will enable us to provide vital help and support to many thousands of babies and their families around the UK to make sure they have the very best start in life.” For more information about Prudential RideLondon and how you can ride for Bliss, go to page 8.

Bliss Scotland expands services We are delighted to announce that Bliss has been awarded a grant from the Scottish Government to develop ‘Bliss Scotland’. This funding allows us to expand our services and as a result we are delighted to announce the appointment of Diane Waugh as Bliss Scotland Coordinator. Diane’s focus will be designing and delivering family support services across Scotland in partnership with healthcare professionals, families and Bliss volunteers.

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For more information, contact Diane on dianew@bliss.org.uk

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Our report finds that on average, parents with a premature or sick baby are spending an extra £282 per week - or £2,256 in total - just to be at the hospital with their baby. In the report, which we launched at the Houses of Parliament with over 40 MPs attending - we lay out some

simple recommendations that would help reduce the financial burden on families. For parents of special care babies, it’s not a game, these costs are very real. There are many things parents will worry about when their baby is admitted to neonatal care, whether they can afford to be there with their baby shouldn’t be one of them. Go to page 15 to see our special 7-page feature on the report and join the campaign

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How did we help babies and families in 2013? Go to Bliss’ website now and you can watch our video review of 2013 and see impact our work last year had on the lives of thousands of special care babies and their families. Thanks to your support we’ve achieved so much, but there’s still so much more that needs to be done – so share the video with your family and friends and help promote our cause. To watch the video, go to bliss.org.uk/ 2013review

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Prudential RideLondon

Get on your bike for Bliss! Fulfil your potential with Bliss - the official Prudential RideLondon Charity of the Year for 2014

hen Sir Bradley Wiggins CBE cycled his way into the history books in London 2012, few could have imagined what particular lasting legacy he would leave. A year later, even Sir Bradley may have been amazed to see thousands of cyclists – from groups of powerful pros through to sets of smiling friends and families – following his route in a bid to make their own important difference. And all broadcast on TV and relayed around the world to an audience of millions. This is Prudential RideLondon, a ‘festival of cycling’ that includes Prudential RideLondon-Surrey 100, a biking spectacle that follows the 100-mile Olympic route Wiggins and his fellow Olympians cycled at London 2012. Bliss is thrilled to announce that we have been chosen as the first official Prudential RideLondon Charity of the Year for 2014 and

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we’re looking for cyclists of all abilities to join our team to help raise money for special care babies and their families. “We had over 55 riders take part in the inaugural event last year and they raised around £36,000 as a result,” says

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Fran Llewellin, Community and Challenge Events Officer at Bliss. “We were absolutely delighted when our bid to be the first official Charity of the Year for Prudential RideLondon-Surrey 100 was successful. It means we are given 100 extra places in the

Prudential RideLondon What a fantastic day! Proud of what I’ve achieved this year and proud to be a part of Bliss, what a deserving cause! Jimbo Ford, Bliss cyclist at Prudential RideLondon 2013

race this year. We now have 300 cyclists supporting us, meaning we could potentially raise over £750,000. This will have a hugely positive impact on the Bliss Nurse programme.”

The money raised by our Prudential RideLondon cyclists will have a hugely positive impact on the Bliss Nurse programme Bliss Nurses provide direct support to families while their baby is in special care, providing vital information, helping parents to care for their baby, helping with breastfeeding, sign posting them to support in their local area and putting families at the heart of their baby’s care.

Caring for families in this way can make a real difference to the outcomes of premature and sick babies. There are currently four Bliss Nurses in post, and Bliss aims to recruit a total of 28 by 2020. “As well as helping accelerate the Bliss Nurse programme, we know that the bike ride will do something really special by raising our profile,” says Llewellin. “A lot of the cyclists supporting us are either parents or friends of a premature baby, or were themselves born too early and know the difference we can make. But many people don’t have any understanding of premature birth, or any idea that 80,000 babies arrive in the UK too early every year. So often they simply aren’t aware of what Bliss do. This year we are hoping that will change.”

If you’d like to fulfil your potential and become a part of the official Prudential RideLondon Charity of the Year team

Little bliss

Go to bliss.org.uk/cycling Get in touch events@bliss.org.uk Call us 020 7378 5745

Spring/Summer 2014 9

Prudential RideLondon

“I’m going to ‘RideLondon’ for my inspirational granddaughters...” Making up the 300-strong Prudential RideLondon team for Bliss this summer will be 80 riders from Marshall Group. One of those riders will be Graham Frobisher, whose granddaughters were born at just 24 weeks. Here, he tells his story and explains why he’s riding to raise money for other special care babies.

hen Graham Frobisher turned 67 this spring, he shared his birthday celebrations with granddaughters, Louisa and Milla, who turned eight on the same day. He also spent his birthday doing some serious training - crucial if he is to join his colleagues from work and complete Prudential RideLondonSurrey 100 bike ride this summer to raise funds for Bliss. Graham is part of an 80-strong cohort from Marshall Group – a company based in Cambridge who hope to raise – £50,000 for special care babies and their families. Graham knows only too well just how important both the money, and the awareness, raised by taking on this challenge will be. Louisa and Milla arrived 16 weeks early, weighing just 630 grams each. Their sister, Jewel, was born two days before them. Tragically, Jewel passed away 17 days after she was born.

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“It was such a shock and so jumped at the chance to join the completely bewildering when it Prudential RideLondon team with happened to us,” says Graham. Marshall when the opportunity “My wife and I live in Corby and arose. my son Tony and his wife live in “We are really excited about Worcestershire, but the babies the opportunity that Prudential were transferred to Liverpool RideLondon has provided us to almost immediately after support Bliss,” says Glen Clark, a the birth.” Marshall Finance Director. “Bliss The unit in Liverpool was the closest neonatal intensive care unit that could look after Graham’s granddaughters, but this was still over 100 miles away from their parents’ home. “Rini - my daughterin-law - stayed with them in Liverpool for the six months they were there, while Tony juggled his job and travelled back and forth. It was a hugely difficult time. It changed all our lives forever.” Graham was so moved by the experience of his granddaughters being Proud grandfather, Graham, holds born early, and the stress it Louisa and Milla in his arms put it on his family, that he

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Prudential RideLondon happens, and in the years afterwards, is crucial, and yet there is still a real lack of awareness of premature birth or the long term impact. I certainly had no idea, no understanding of what it meant. You can’t encourage empathy or action unless there is understanding, so telling their story - Bliss’ story will, I hope, encourage others to get behind this cause.”

Louisa and Milla were born 16 weeks early and weighed just 630 grams each - miraculously they survived this traumatic start is a charity that several of our staff have a personal link to, and we’re thrilled to be able to raise money for them by taking part in such a brilliant event.”

We hope by telling Bliss’ story we can encourage others to get behind this cause Against all the odds, and after six months in hospital, four operations and countless setbacks, Louisa and Milla were allowed home. Over the last six years, Louisa has gone on to surprise everybody with how well she has grown and developed. Despite being blind in one eye and visually impaired in the other, she is a bright, happy girl.

Milla developed severe cerbral palsy as a result of her extremely premature birth. She is unable to sit, stand or walk, as well as talk. In addition she has to be fed by a stomach tube and needs care 24-hours a day. However, in the words of Tony, Graham’s son, “She brings joy to us and so many other people with her warm, friendly smiles and loving personality” and has proved to be an inspiration to the families’ fundraising efforts over the last few years. “Tony has done amazing things to raise money for Bliss since having the girls,” says Graham. “I guess as their grandfather I hope with this bike ride I can somehow make a difference too - to others, and to my own granddaughters. Ongoing support for families when this

If you would like to support Graham and his colleagues at Marshall Group in their attempt to raise £50,000 for special care babies go to justgiving.com/ teams/marshallridelondon

Today, despite the ongoing challenges the girls face, Milla and Louisa bring joy into the lives of Graham and his family

If you or your company would be interested in raising money for Bliss, please contact Catrin Hale on

020 7378 1122 or catrinh@bliss.org.uk Little bliss

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Look at them now Look at them now follows the amazing, inspiring and sometimes miraculous journeys of special care babies. This issue we meet Sam Hafenâ&#x20AC;&#x2122;s twin boys, Noah and Archie, who were born at just 29 weeks.

Birth

The boys had a long list of medical problems. Noah was ventilated for a few days, had NEC and prolonged jaundice. Archie had a strangulated hernia which led to him having an operation.

However, after a total of 10 weeks in hospital the boys were allowed home, one week before their due date.

Samâ&#x20AC;&#x2122;s twin boys, Noah and Archie were born at just 29 weeks, weighing a tiny 1lb 12oz and 2lb 8oz respectively. They were delivered early by C-section after Sam developed pre-eclampsia.

Both also had the problems typically associated with prematurity - difficulty feeding, difficulty breathing without oxygen and vulnerability to infections. 12 Little bliss

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Look at them now They do everything you would expect boys their age to do. They go to pre-school four times a week and run around with their friends. Sam Hafen, Noah and Archie’s mum

The boys are now three years old. They do everything you would expect boys their age to do, going to pre-school four times a week and running around with their friends.

Noah is quite small for his age but beyond that Sam says you could never tell what they went through when they were born. They are lively, have good mobility and co-ordination.

Today

The boys have just reached a new milestone; starting school last September.

Archie is even a bit ahead for his age and Noah is quickly catching up. “They have never been sickly and I know they will continue to do well,” says Sam.

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Welcome pack leaflet 2014 Final 223x168.pdf

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Supporting families for over 35 years

Peer support

Message board Free publications

Helpline

CMY

Online information

Counselling

Helpline: 0500 618140

Bereavement support

hello@bliss.org.uk

Registered charity no. 1002973 Scottish registedred charity SC040878

bliss.org.uk

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, It s not a game:

the very real costs of having a premature or sick baby

here are 78,000 babies born too soon, too small and too sick in Britain each year. Alongside the fear and anxiety felt by their parents is the reality of a hospital stay that can stretch from weeks into months. In February, we published a report which found that these parents were facing an average extra weekly spend of £282 per week, or £2,256 over the whole of their baby’s stay. Many of these costs relate to travel, food and accommodation and can leave parents

with the threat of not being able to afford to be with their baby in hospital. In our report we argue that much more could be done by government, hospitals, the NHS and employers to support parents and help reduce these costs. For parents of special care babies, it’s not a game, these costs are very real. There are many things parents will worry about when their baby is admitted to neonatal care, whether they can afford to be there shouldn’t be one of them.

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Enough is enough When their baby arrived early, Darren and Kayleigh’s lives were turned upside down – by the financial cost as well as the emotional one. During their son’s time in neonatal care they had their car repossessed, sold their fridge to pay for petrol and moved house to reduce their rent. Now they are joining our campaign to make sure others don’t suffer as they did.

Thomas was born at 25 weeks and immediately transferred to a hospital over 30 miles away

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t was a car park fine that did it. A charge of £64 for an expired ticket that prompted nurses to seek help for Darren and Kayleigh Wood, some months into their baby’s stay in hospital. The nurses’ action bought them two days grace from the car park attendant. It was the one and only form of practical support this family received since their lives had been turned upside down by the early arrival of their son Thomas. When we launched our report highlighting the costs of having a premature or sick baby, it called for support for parents to cover accommodation, meals, extended parental leave, and basics like free car parking. While there can’t be any right-minded person who wouldn’t back this campaign, very few can understand what happens to families – and will keep happening to families – if nothing changes. The current system can offer little support to new parents who simply want to be at their baby’s side during the hourto-hour struggle to stay alive. This has real and often devastating consequences for families. For Kayleigh and Darren, whose son was born at 25 weeks at their local hospital and then immediately transferred to a neonatal intensive care unit over thirty miles away, the first three months involved 6am starts to get to the hospital by 7am so Kayleigh could be with Thomas while Darren drove for an hour to get to work. His paternity leave was limited to two weeks and there was no flexibility on his contract as a local bus driver. There was no room in the hospital for Kayleigh, no accommodation nearby that they could afford, so during the working week Darren would drive back to the hospital in the evening to see his son before bringing his wife home about 10pm. He’d get a few hours sleep before getting up at 6am the next morning and starting the whole process again. “When it first happened the last thing we thought about was money,” says Darren.

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“When we were at the hospital nothing mattered except Thomas. It was only when we got back each night and saw the bills and totted up the cost of the four hour daily commute we would start to worry.” We estimate that the average cost of having a premature baby is over £2,250, doubling in some cases. Kayleigh had to halve her hours as a carer for dementia sufferers when she became ill during pregnancy, and because of Thomas’ needs is now unable to return to work. The family had to move home during Thomas’ hospital stay to reduce rent and borrow a car when their own was repossessed because of late payments. Kayleigh recalls eating a lunch that consisted of no more than a banana and biscuit brought from home before breastfeeding and having to sell their fridge freezer to pay for petrol. She remembers on one bleak day when Thomas had

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During Thomas’ time in neonatal care his parents had to sell their fridge and had their car repossessed

When we were at the hospital nothing mattered except Thomas. It was only when we got back each night we would start to worry had a massive set back, Darren couldn’t get time off. She had to text him at work to let him know their son was still alive. “Looking back I do feel angry. Darren fought in Afghanistan when he was in the army. It seems shocking that having given so much for your country, it isn’t there for you when you need it most. The experience was isolating and exhausting and could have pulled us apart, but it brought us closer. I guess we thought if we could get through this we could get through anything. Thomas will be three before we’ve cleared debts accrued after he was born, but we have him here – he’s 18 months old now – and we just feel lucky he survived.”

Thomas will be three by the time his parents have cleared debts they accrued while he was in hospital

If you’d like to join our campaign to ensure other families don’t have to go through this kind of experience, go to p21 now and find out how.

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Some of our recommendations Free parking for parents of babies on the neonatal unit (Scottish and Welsh hospitals already provide this) & help with travel costs 18 Little bliss

Parents to be provided with meal vouchers or hospital meals

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Parents to be provided with a welcome pack on arrival at the hospital with information about financial support available to them Little bliss

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Help and advice Do you have a baby in special care? Are you worried about the impact this could have on your finances? Do you need someone to talk with?

TION INFORMA CARD r s helpline fo Call the Blis ent er iff d e about th information port p su d n a dvice financial a ble to you: that is availa ay to 140 (Mond 0500 618 ). m p 9 to Friday, 9am rg.uk o s. lis b @ ello Or email h back to d we’ll get n a e im yt n a ible. ss o p n as you as soo

INFORMATION CARD Some hospitals offer free or reduced parking, free or discounted meals from the canteen, and some free transport. Speak to a nurse on the unit to check if this is available where you are or ask the Patient Advice and Liaison Service (PALS). Keep this card until you need to play it

INFORMATION CARD The Family Fund can also help; this is a national organisation that provides grants to families with seriously ill or disabled children. Go to familyfund.org.uk or call 08449 744 099

INFORMAT ION CARD Turn2us can help you fin d out what benefit s or grants may be available, they also ha ve an online be nefits checke r. Visit turn2us .org.uk or call their he lpline 0808 802 2 000. Keep this ca

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INFORMA TION CARD If you earn less than £ 16,000 a year then you might be able to recl aim your tr avel costs. You will need to keep all your rece ipts and ask at the hosp ital about th e process fo r claiming. Keep this

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P.15-21_Little Bliss campaign pages form INQ Design_v2_JÁ_bleed.indd 20

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Join our campaign Join our campaign today and help ensure that parents of special care babies have the financial support they need. No parent shouldface the agonising decision of whether they can afford to be with their baby in hospital.

Read the report! Once you’re armed with the knowledge and facts, you’re ready to get involved! Download a copy here:

bliss.org.uk/campaign-report

Share it #notagame Now you’ve got the facts, make sure you spread the word on Facebook and Twitter and get others clued up too.

Become a campaigner! This is only the start! Make sure you don’t miss out on upcoming opportunities by signing up to our Action for Bliss campaigners’ network: bliss.org.uk/action-for-bliss

Get your MP to take action We need to make sure every MP reads the report, understands the issues affecting parents and supports the campaign. They can ask a question in Parliament or visit a unit. Go to bliss.org.uk/takeaction

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Bliss special appeal

Mother’s & Father’s Day This year, hundreds of mums and dads across the UK will be spending Mother’s Day and Father’s Day waiting anxiously by the side of an incubator. On either of these days alone, 220 more babies will be admitted to special neonatal care units across the UK. Little bliss speaks with two parents of special care babies whose very first Mother’s Day and Father’s Day were ones to remember.

Why Mother’s Day will always be special to me...

my Killick’s pregnancy had been littered with obstacles that required her doctor and midwife to keep a constant eye on her. After a routine check-up at 34 weeks, Amy was admitted to hospital with high blood pressure. She was diagnosed with HELLP syndrome, a variant of pre-eclampsia, and required an emergency c-section. When her son, Oliver, was born he was put on CPAP to help with his breathing.

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Before Amy had a chance to see her baby, he was transferred to a hospital that could provide intensive care. “I had to stay at the hospital that he was born in,” says Amy. The next day Amy was transferred to the same hospital as Oliver. “I got there and couldn’t wait to see him but they said I still couldn’t hold him. I just wanted to pick him up and never let go.” The following day was Mother’s Day. “I walked down to the intensive care unit really not expecting to be able to hold my little boy. I cried so many happy tears when they said I could give him a cuddle. Getting to hold my little boy for the first time on Mother’s Day –

what more could I ask for?” Oliver left intensive care after seven days and over the last year he’s progressed well, hitting all his milestones. Thankful for the support and advice Bliss gave her, Amy is now a Family Group volunteer for Bliss. “I’m looking forward to this year’s Mother’s day,” says Amy, “but I certainly won’t forget my first ever Mother’s Day and how special it was to have my first ever cuddle with my son.”

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Bliss special appeal

I’ll never forget that first Father’s Day…

atthew Ramsden’s wife, Sarah, gave birth to triplets in the summer of 2012 at 31 weeks, the day before Father’s Day. Sarah had been in hospital with preeclampsia from 26 weeks, so their daughters’ early arrival was expected – it still caught Matthew by surprise a little bit though. “I’d be planning to do some decorating after visiting Sarah, when all of a sudden an ordinary day was transformed into the big day we’d been preparing for,” says Matthew. When Josie, Scarlett and Grace were born, Matthew was able to see them briefly before they were whisked away to be checked over. With his daughters in intensive care and his wife taken to a

high-dependency unit, Matthew suddenly realised how dependent his entire family were on the skills of the hospital staff whilst he could only stand by and watch. “I was told that I would be better resting at home and returning in the morning.” When Matthew returned the next day, he was pleasantly surprised to be greeted by a bar of chocolate on each of his daughters’ incubators along with a Father’s Day card, which had been provided by a Bliss volunteer. “It does not sound much, but I was absolutely thrilled and taken aback to have received anything at all. I still have the cards tucked away for safe keeping now although the chocolate has long since been eaten!” Later in the day, with Sarah improving all the time, Matthew and his wife were able to visit their babies together. “I can’t describe the excitement of being able to see our babies together rather than just me on my own. We had started to feel like a proper family in my eyes.” Matthew adds: “It was my first Father’s Day as a dad and one I definitely will remember and look back upon with

great happiness. There were many ups and downs during our babies time in hospital before the magical day when we were finally allowed to bring them home. Despite all of the other memories they have given us since their birth I will still remember that first Father’s Day with great fondness.”

Can you help us to continue providing the support these families desperately need? Bliss is here for parents like Amy and Matthew, their families and, of course, their babies. To help us continue providing this support, please go to page 35 and complete the donation form or go to bliss.org.uk/donate

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Innovations in care

A mark of quality In late 2013, Bliss launched a scheme that will improve the quality of care and support given to special care babies and their families in neonatal units across the country. Gemma Pritchard reports on this scheme for Little bliss.

n November, the Bliss FamilyFriendly Accreditation Scheme – or BFFAS for short – was launched. Over the coming years, BFFAS will assist and support neonatal units to deliver highquality family-centred care. The launch was the culmination of over eight years of hard work that started in 2005, when the Bliss Baby Charter – a set of seven principles regarding the nonclinical care provided on neonatal units - was first published. In 2009, the Department of Health published guidelines, which recommended that neonatal services should be more family-centred – echoing the principles outlined in the Baby Charter and bringing the concept of non-clinical care to the

forefront of neonatal care. Since then, Bliss has been working closely with health professionals and neonatal units around the country to look at ways that family-centred care can be embedded into the everyday practices of doctors and nurses.

BFFAS will assist and support neonatal units to deliver high-quality family-centred care This work means units could now assess the standard of family-centred care that they provided and identify ways to improve it.

In 2012, the Department of Health awarded Bliss a grant to develop this work further. This funding meant that the scheme would serve as a meaningful and effective benchmark for assessing performance, rewarding achievement and driving improvement. In late 2013, BFAAS – which encompasses the principles outlined in the Baby Charter, the Audit Tool, combined with a quality standard for those units who achieving the seven principles – was born. Bliss is now working hard to encourage all neonatal units across the country to sign up to the scheme and place family-centred care at the heart of the care they provide.

All neonatal units are now able to apply for accreditation. To sign up for BFFAS please contact Laura Knaier at laurak@bliss.org.uk 24 Little bliss

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Innovations in care

What is BFFAS? BFFAS was set up to recognise and reward those units which consistently deliver high-quality family-centred care. It is a benchmark of quality for health professionals to compare how their unit is doing with others in the country, and to drive improvements and innovation. The scheme is open to all neonatal units, no matter what size or level. There is no cost attached to applying for accreditation, all that Bliss request is for each unit to volunteer a health professional to give a small amount of time to help assess other units in their area.

What is family-centred care? Family-centred care is an approach which places parents at the centre of their baby’s care. Doctors and nurses work in partnership with parents and other family members, to provide care of the very highest quality for special care babies. Extensive research has shown that family-centred care is hugely beneficial, resulting in better health outcomes for babies, shorter hospital stays and fewer readmissions. BFFAS helps to improve the delivery of familycentred care by measuring the performance of neonatal units against seven core principles which summarise the care, respect and support that vulnerable babies and their parents should receive, and supports the staff on those units to implement any necessary changes.

Liz McKechnie is a Neonatal Consultant at Leeds General Infirmary. The neonatal unit at Leeds was one of ten pilot sites for BFFAS. Having audited their unit, they have since made huge improvements to the non-clinical care they provide. “Completing the audit really brought into focus the areas where we were doing well and the areas where there was room for improvement,” says Liz. Liz then led a team of neonatal health professionals who worked on ways to improve these areas over a period of a year. The team then re-audited themselves and found they had made huge progress. Now, for example, all babies on the unit even those in intensive care - spend at least some time receiving Kangaroo Care (skinto-skin contact) with their parents and the nurses receive specialist training on how best to support parents in doing this. The unit has also improved its breastfeeding rates by creating ‘breastfeeding champions’ – nurses who prioritise helping mums to breastfeed and express milk. Liz is delighted with the changes made on her unit as a result of taking part in BFFAS and would recommend other units to take part too: “These changes cost little or nothing to implement but have an enormous impact.”

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EPICure

EPICure: the research shaping the future of babies born too soon... EPICure is the longest running study into prematurity in the world - a study that Bliss has supported since it began 19 years ago. It looks at survival rates and the long-term health of babies born very early and has the power to transform the lives of millions of other babies who will follow them into the world too soon.

t is sometimes hard to connect the £1, or even the £100, donated to research into neonatal care with the difference it can make to individual lives. Not so with EPICure. This unique research – the longest running study into prematurity in the world – was launched with help and funding from Bliss and has followed the lives of scores of babies born in 1995 between 22 and 26 week gestation. Researchers have so far met with the families taking part in the research when the group reached two years, six years, 11 years and 16 years. The findings of EPICure have the power to shape health policy, save babies’ lives and transform the educational experience of premature-born children by promoting a better understanding of some of the most unique aspects of their development. The research group – now in their nineteenth year – are now travelling back to London for the next stage of the study: EPICure@19. “EPICure has always been a world leader on this subject,” says Professor Neil Marlow, director of the study and a Consultant Neonatologist at University College London’s Institute for Women’s Health. “In 1995 we wanted to demonstrate the risk of being

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born at low gestation, which we knew would have an impact on colleagues who worked in obstetrics and neonatology. But by making it into a longitudinal study we could also feedback to parents and professionals what the outcomes for these babies were likely to be.

Until EPICure no one had a handle on how many babies were surviving, or what the future was like for them if they did “Until EPICure no one had a handle on how many babies were surviving, or what the future was like for them if they did,” says Professor Marlow. “How the risks of an early birth translate into the lives of infants as they grow, evolve through puberty, enter early adolescence and become young adults. I know when we did a two-and-a-half year study, outcomes for some looked poor, but at six and 11 the same children had sometimes overcome some difficulties. We are really interested to see what has happened to this generation of children now they are 19.”

EPICure

Identifying a child who has problems with maths is one thing, but knowing how that child learns as a result of an early birth, and so how to help them effectively is different Professor Marlow says the research – which is now funded by the Medical Research Council and draws on similar research being done across the world – has helped them identify a whole range of issues. From the impact of where a baby is born and the care he or she receives in the delivery room and the days immediately after birth, to the learning difficulties, which need to be better understood by families and by those who will educate and support these children at school. “Identifying a child who has problems with maths is one thing, but knowing how that child learns as a result of an early birth, and so how to help them effectively is different,” says Marlow. “Bliss supports families at a time when they need us most,” says Zoe Chivers, Innovations Manager at Bliss. “Informing them about research is an important part of what we do. Parents need an insight into what the future holds, and what support they can get as their child grows. EPICure has helped us see the potential every baby has. “By looking at the long term outcomes throughout their childhood and young adulthood, it helps shape the information and support we offer. We are so proud to be part of this study because we can see how it will help all of us who are involved in child health provide the right sort of educational, social, and psychological support as a child grows.”

I am bursting with pride. Georgie seems to have moved mountains in her 19 years, largely by giving 110 per cent to everything. Georgie was born at 25 weeks and given a very small chance of survival. We can see, looking back, how much we have learned and how much more needs to be understood in health and education. I can remember how Georgie hated school when she started, and how on her first school report the teacher talked about what she ‘couldn’t’ do, but asked me to read that as ‘wouldn’t’, as if my daughter was purposely being difficult. Georgie and I are delighted she is involved in this study, and are excited about the difference the findings might make to other families in the future.

Sallie Watson, mum to Georgie (above and right) who is part of EPICure’s study group

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The benefits of volunteering Volunteers are at the heart of the work we do. But, as well as supporting the families of premature and sick babies, volunteering for Bliss can have a number of benefits for you too. You could develop valuable new skills - leading to improved job prospects, building personal confidence, meet new friends or inspire a change of career. Here we ask some of our volunteers how giving their time for Bliss has helped them.

Mum of two, Nadia Salfarlie, is a Bliss Champion at a hospital in north London. Nadia is studying to become a midwife and volunteering with Bliss has helped her to impress interviewers as well as helping her to develop the right skills for the job.

“The experience has built my confidence through putting me in a stimulating environment with senior medical staff who trust and value me as part of their team.”

“I learnt so much from the experience and I loved being around the mums and their babies. It was great seeing them grow and develop and it was really rewarding.”

Kemi Ezediouno is a psychology graduate who recently got her first job as a psychological rehab assistant. She eventually wants to be a perinatal psychologist. She volunteered for Bliss as a Family Group volunteer, which helped her build skills relevant to her chosen career.

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Mum of three and psychotherapy student Rachel Schofield is a Bliss Champion. Rachel’s twin daughters Iris and Zoe were born at 33 weeks after. She wanted to volunteer so she could draw on her personal experiences of having premature babies to help support other parents.

“Being able to be on the unit talking with parents has been brilliant for helping me to develop the counselling skills that I am learning on my course.”

“Campaigning has given me confidence. It has also helped me come to terms with my own journey and realise just how precious my little miracle really is.”

When Mandy McKeon’s son Liam was born at 23 weeks, she was shocked by the contrast between the care he received at different hospitals. Mandy went on to campaign nationally with Bliss for consistent standards of special care, meeting with senior politicians and even taking part in an election broadcast.

Thegla Poku-Agyemang is a parent representative. Parent reps help to advise neonatal networks on what parents want and need. Thegla’ s daughter was born 12 weeks early, and she wanted to make a difference for premature babies and their families.

“I feel like I am helping to make a difference for other families and I know my advice is valued.”

“The bike ride is one of the best things I’ve ever done. Then when Samuel arrived early, this charity we had raised all that money for quickly became a big part of our lives.”

Robert Lucy took part in a 540-mile bike ride to raise money for Bliss. He had not been aware of the charity before then. Shortly after he returned, his wife Tessa gave birth to their son Samuel two months early. Having learnt about Bliss, Robert knew exactly where to turn for support and information, and his efforts to fundraise for Bliss felt all the more poignant. Little bliss

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Get involved - Buggy Push

Get your Buggy Push on! Do something amazing in 2014 and join or organise a Bliss Buggy Push to help create a brighter future for special care babies and their families. Dust down those buggies and do something different this summer! Help special care babies and their families by taking part in Bliss’ 5k Buggy Push in London or organise your own in your local area!