Little Bliss issue 31

Littlebliss The little magazine for Bliss’ biggest supporters Issue 31 - Autumn/Winter 2013 bliss.org.uk/littlebliss

World Prematurity Day special

The power of hugs How Kangaroo Care made all the difference to this family

And more: Get on your bike for Bliss l celeb supporter wins big for babies l real life stories

Welcome to the new-look Little bliss!

W

e’ve been working hard over the summer months, reviewing past issues and consulting with parents across the country, to improve the magazine and we hope you’re happy with the changes we’ve made.

You’ll notice that we’ve honed the look of the magazine, so pages look sharper with more images and less text. And we’ve made some changes to the regular features in the magazine too: we’ve said goodbye to the Kids section and our to nationwide tour of neonatal

units in Welcome to..., but in doing so we’ve been able to say hello to new features like Top tips from parents (p12) and the Thank you section (p26-27).

Not to mention a one-off 8-page special feature on World Prematurity Day, where we explore the theme of this year’s international awarness raising day: Kangaroo Care and the importance of it to both special care babies and parents.

Little bliss is constantly evolving so if you have any suggestions as to how we can improve the magazine further, get in touch and let us know.

Mark Gorman, Editor

Registered charity no. 1002973 Scottish registered charity SC040878

13-20 Special feature to celebrate World Prematurity Day

4 See how Team Bliss did at the very first RideLondon event

2 Little bliss

22 Campaigning success: deferring or delaying school entry Autumn/Winter 2013

On the cover...

18 The power of hugs

About Bliss Bliss ensures that more babies in the UK survive and have the best quality of life by: • supporting parents and families • campaigning for improvements in neonatal care • promoting developments in care.

As part of our World Prematurity Day special, we look at how Kangaroo Care made a difference to this family’s life when their son, Rhys, was born over three months early

In every issue...

4 News

For a listening ear call our helpline 0500 618140

10

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

All the latest news and updates from Bliss

Little bliss online bliss.org.uk/Littlebliss

10 Look at them now

One boy’s journey from neonatal care to now

The Little bliss team Editor: Mark Gorman Design: Jess Milton, Ysabel Schonegeval (p16-17) Contributors: Gemma Pritchard, Jenny Hulme, Claire Neville Proofreading: Christine Cayley Photography: Lynsey Doran (cover and p18)

12 Top tips from parents

What advice do you wish you’d been given?

28

28 Thank you

Celebrating our amazing supporters

Features

Little bliss 9 Holyrood Street London SE1 2EL t 020 7378 1122 e little@bliss.org.uk bliss.org.uk

8 Protecting your little one this winter RSV and other common winter illnesses

13 World Prematurity Day

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.

21

8-page special feature

21 An introduction to neonatal care Bliss launches new video series for parents

© Bliss 2013. No part of this publication may be reproduced without prior permission from Bliss.

24 You’ve got a friend in me How Bliss’ new Buddy Scheme is helping families

26 Get involved with Bliss!

24

Cake A Difference and cycling events

Get in touch

Go online

Donate

Get involved

Little bliss

Autumn/Winter 2013 3

News

on 10 0 gu ra l Ri de Lo nd an ts of th e in au cip rti pa on r ee cli ng ro ut e to ch op le lin ed th e cy Th ou sa nd s of pe

Cycling’s ‘London Marathon’ a huge success This summer, 57 Bliss riders took to the road as part of the very first Prudential RideLondon 100 cycling event to raise money for special care babies and their families.

Organised by the same people who plan the London Marathon, RideLondon is based on the route cycled by British heroes such as Sir Bradley Wiggins and Chris Froome at the London 2012 Olympics. Starting at the Olympic park in Stratford before heading out to Surrey, to take on the infamous Box and Leith Hills, our

riders finally finished their epic challenge in central London in front of thousands of spectators.

We have been blown away by the amazing fundraising... in total they have raised almost £30,000 The event was a resounding success and, despite some sore legs (and bottoms), most people said they were keen to take on the challenge again next year.

We have been blown away by the amazing fundraising efforts of those who took part in RideLondon. In total they have raised almost £30,000 in a very short amount of time.

Although only in its first year, the Prudential RideLondonSurrey 100 has quickly become the biggest cycling event in the UK calendar and we are already registering cyclists for next year’s event.

For more information on how you can take part in RideLondon 2014 and other cycling events turn to page 27.

Pictured accepting the award is Bliss’ Family Support Manager, Carmel Bartley

Rid eLo nd on is set to rival the Lon do n Ma rat ho n as Lon do n’s big ge st ma ss pa rtic ipa tio n even t

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bi es sp ec ia l ca re ba er £30,00 0 fo r ov ise ra to st in Au gu ar m af te rn oo n e st re et s on a w th to ok to s er 57 rid

Celeb supporter Natalie Anderson wins £80,000 for Bliss on ITV talent show Emmerdale actress, Natalie Anderson, was crowned the winner of the ITV celebrity singing competition Your Face Sounds Familiar, raising over £80,000 for special care babies.

For six weeks, celebrities were challenged to perform as iconic music artists. The winner of each show could donate £10,000 to a charity of their choice and Natalie very generously nominated Bliss as her designated charity.

Natalie won three of the

first five shows. Her winning performances included Britney Spears’ hit song ‘Toxic’, Kate Bush’s classic ‘Wuthering Heights’ and Bonnie Tyler’s power ballad ‘Total Eclipse of the Heart’ in episode five. In total, she raised £30,000 for Bliss from the first five shows.

The Grand Final took place on 4 August, and Natalie gave two more fantastic performances, this time as Jessie J and Mariah Carey.

Through a combination of scores from judges and a public vote, she was crowned

champion of the series, winning a £50,000 grand prize!

In total, Natalie raised over £80,000, winning four out of six episodes and entertaining us hugely along the way.

Thank you Natalie from all of us at Bliss!

Int ere st in ne xt ye ar’ Little bliss l Spring 2010 5 s even t is alr ea dy hig h so ge t in tou ch wi th the Bli ss even ts tea m now!

News

Calling all parents!

If you are keen to get involved in improving the care given on neonatal units, but aren’t quite sure how to go about it, this might be the thing for you.

We are starting an exciting new project where we will be supporting both researchers and parents involved in neonatal research.

Our aim is to raise awareness of the importance of research in improving neonatal care of the future.

Parents are often approached about different research trials while on the unit. We know this is a stressful and daunting experience and therefore want to ensure that any information given is clear and concise.

If you want to get involved or find out more information email innovations@bliss.org.uk

Have you been involved in neonatal research?

We want your help in developing these three tools to meet the needs of parents involved in neonatal research: • Develop resources to be used by health professionals on units to assist with effectively supporting parents who are participating in research e.g. Bliss branded posters, parent information leaflets, communication guidelines.

•

Produce a set of web pages where we can explain how the research process works, how and when parents can get actively involved and what parents should expect when their baby is recruited onto a trial.

•

Produce a valuable online source of information detailing the outcomes of neonatal research that has been undertaken already.

New scheme puts families at centre of a baby’s care We are very excited to announce that the new Bliss Family Friendly Accreditation Scheme (BFFAS) will be launched at our National Action and Good Practice Conference on 20 November in London.

The scheme follows on from the very successful Bliss Baby Charter Audit Tool and encourages neonatal units to put families and the needs of families at the centre of a baby’s

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care and rewards those units who continually demonstrate their commitment to this approach.

Putting families at the centre of a baby’s care can improve both short and long term health outcomes for the baby and has many benefits for the family too.

Health professionals interested in implementing the scheme on their unit are encouraged to attend the conference. It is free of charge to attend, but places are limited.

If you are a parent of a premature or sick baby and you’d like to attend the conference or find out more, please get in touch with the Bliss Innovations Team.

Go online to find out more or to register for this event.

If you have any questions email innovations@ bliss.org.uk or call 020 7378 1122

News

Bliss Nurse programme doubles in size: now reaches North East and Midlands

We are thrilled to announce that we have appointed two new Bliss Nurses; one at the James Cook University Hospital, Middlesbrough and one at Birmingham Women’s Hospital and Heartlands Hospital covering the South West Midlands network.

Launched in 2011, Bliss Nurses provide practical advice, emotional support and guidance directly to the parents of special care babies. They help parents to have a central role in the care of their babies, which is likely to contribute to improvements in the child’s long term health outcomes.

Parents often tell us what an amazing job clinical nurses do caring for their baby but sometimes feel like they’re not able to be parents in the traditional sense and be part of their baby’s care.

Thank you for the practical tips, emotional support and helping us to get out of the door on the last day!

Bliss Nurses provide direct support to families, giving advice and emotional support. They ensure that the unit they work on

provides consistent, high quality family-centred care, including promoting breastfeeding, Kangaroo Care and ensuring the right facilities and help are available.

With no clinical duties, Bliss Nurses have time to focus on the needs of the whole family and work with colleagues to ensure the standard of family-centred care is raised throughout their regions.

One mum who was supported by our Bliss Nurses at St George’s said: “Thank you very much for everything you did for us during our little girl’s 19 weeks in the hospital. We found you both incredibly helpful to us during a very difficult time.

Thank you for the practical tips, emotional support and helping us to get out of the door on the last day!”

These recruitments take the total number of Bliss Nurses to four – with the first nurses recruited at St Georges in London and the Norfolk and Norwich University Hospital.

We aim to have 28 nurses in post by 2020, one for each neonatal network in the UK.

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HealthNews

Protecting your little one this winter All babies experience winter illnesses, but babies born too soon, too small or too sick can be more susceptible to infections. Respiratory syncytial virus (RSV) affects a third of all babies, but babies born prematurely or with breathing problems can be at higher risk. Here we look at the symptoms of RSV and how you can protect your baby.

S

arah Connolly’s eldest daughter Nadia was born at 25 weeks in 2008 weighing just 740 grams.

Nadia suffered from a number of complications, including breathing difficulties, and was in hospital for over five months.

Shortly after surgery for a tracheostomy Nadia contracted RSV. “She had just had the operation when she became very poorly,” says Sarah.

“At first the hospital didn’t detect it especially as she already had breathing problems prior to contracting to the virus.”

Classic symptoms of RSV are similar to a cold, and include coughing, wheezing and difficulty breathing.

“I knew something was wrong as she was bringing up her feeds, had a high temperature and was just not herself. By the time the doctors realised she had contracted the virus she had already been put on an IV drip, required very high levels of oxygen and was in danger of being put back on the ventilator.”

Sarah found the resources offered by Bliss about RSV and related winter illnesses particularly helpful. “It can be difficult to get enough information from the consultants as they are every busy and therefore it was invaluable to have the information from Bliss on RSV in an accessible format.”

Nadia’s condition improved and despite some ongoing health issues, such as having Nadia has fully recovered from her RSV infection

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Autumn/Winter 2013

News Health a tracheostomy, she eventually went home.

Unlike some viruses, catching RSV does not offer immunity to future infections so Sarah had to be mindful when taking Nadia out in busy public areas during the winter months, as RSV can easily be passed from person to person through hand contact, coughing and sneezing.

Nadia is now five years old and doing very well, with few signs of her prematurity or the complications she had to overcome as a result of it.

For more information on RSV and other common winter illnesses, go to bliss.org.uk/common-winter-illnesses

The RSV season The RSV season usually starts in the autumn and runs into the spring, but can be different in certain parts of the country.

Ask your baby’s doctor when the RSV season occurs in your area.

SEP

OCT

NOV

DEC

JAN

FEB

MAR

APR

MAY

JUN

JUL

AUG

Help protect your baby from RSV disease Wash your hands thoroughly before touching your baby and ask others to do the same

Remember FACT If your baby exhibits all of these symptoms, seek medical advice from a health professional.

F

Don’t let anyone smoke in your home or near your baby

ast breathing: shallow, quick breaths, not taking in much air

A

ppetite: inability to feed

Wash your baby’s toys, clothes and bedding often

C

ough: distinctive rasping cough

T

emperature: high temperature will accompany cold - like symptoms of a runny nose

Keep your baby away from: - People with colds - Crowds - Young children

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Feature Look at them now

Feature

Agony and ecstasy Look at them follows the amazing, inspiring and sometimes-miraculous journeys of special care babies. This issue we look at Eoin Bailey who was born over three months early and suffered a number of complications.

Eoin was born at just 26 weeks, weighing 2lb 4oz.

He required a ventilator at birth and was then moved on to C-pap for eight weeks.

10 Little bliss

Autumn 2013

Look at them now His catalogue of difficulties included a bleed on the brain, a skin condition because his skin was so delicate, three blood transfusions, a zinc deficiency and several infections including meningitis.

He eventually came home four days before his due date.

Eoin endured a difficult first six months after leaving neonatal care, including being re-admitted to hospital with bronchiolitis on his first Christmas.

He is now meeting all his milestones. He started walking at 15 months and was discharged from the Child Development Unit aged two and all other clinics by the time he was three.

“He is a little miracle, he amazes us every day when we think about how far he has come” The damage to his lungs doesn’t bother him now apart from a slight wheeze when he gets a cold, and he rarely needs to use an inhaler.

He loves playing football and swimming.

Eoin, now 6, even started school a year earlier than if he had been born at term (he was due in September but arrived in June).

He is in the top maths group and has had an excellent first year report.

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Top tips from parents #1 What advice do you wish you’d been given when your baby was first admitted to neonatal care?

“Look at the sats and heart rate monitors before and then during Kangaroo Care. It made me feel a little bit less of a failure, and a bit more useful as a mother when I saw his heart rate calm and his sats rise, just from a cuddle.”

Caroline Hearsey, mum to Jim, born at 30 weeks

“Take every hour as it comes; each day is milestone, but you have to understand that ten steps forward sometimes means eight steps back too.” Naomi Cleugh-Clark, mum to Olivia, born two months early

“Don’t fall into the trap of comparing your child to others. Every baby is different!”

Jessica Peach-Miles, mum to Owen, born at 31 weeks, and Poppy, born at 33 weeks

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“It’s OK to cry. I remember walking off the ward one day and finding one of the other mums crying.

We both had a good cry together over nothing in particular… we thought we were cracking up. No one had told us what to expect, they’d been too preoccupied with saying what would happen to the little ones.” Rhiannon Anthony, mum to Ffion, born at 28 weeks

“Keep a diary. Not only is it good for you, it will be good for them to read when they are older. Take as many photos as possible. Keep things like dummies, hospital tags, temperature cuffs etc, anything they will give you.”

Amy Aston, mum to Alfie, born at 25+5 weeks

World

Prematurity

World Prematurity Day 17 November

Day 17 November

To commemorate World Prematurity Day we have produced this 8-page special feature.

World Prematurity Day is an international awareness day that will highlight the plight of 15 million babies who are born too soon around the world each year.

These pages explore the origins of World Prematurity Day, look at why this year’s international theme – Kangaroo Care – is so important, break down stats and facts relating to premature births across the globe and explain how you can show your support by getting involved in this year’s event.

World Prematurity Day November 17

World Prematurity Day 17 November

Join us on World Prematurity Day and help change the lives of babies born too soon

For many of you, the arrival of your son or daughter was probably one of the most isolating experiences of your life. When a baby arrives too soon, it can feel like everything that should go right has gone wrong for you and your precious newborn. You soon learn that this is a problem facing 60,000 families in the UK, and 15 million more across the world, every year. That you are, in fact, far from alone.

Bliss is a member of the World Prematurity Network, which includes consumer and parent groups that are leaders in addressing preterm birth in their countries. Through joint efforts, including World Prematurity Day, members call for action to prevent preterm birth and improve care for babies born too soon.

Join us and help make a real difference to the lives of babies born prematurely, both in the UK and around the world. Together we can be the voice for babies and their families, making sure their needs are heard.

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Why is Kangaroo Care important?

World Prematurity Day 17 November

For a new parent, embracing their newborn for the first time is a powerful experience. For many parents of a premature baby, this may not be possible for many days, or even weeks.

K

angaroo Care - skinto-skin contact with a newborn baby - is now established as a positive way for parents to bond with their baby and have vital direct contact with them.

It’s not a new idea. It was originally a solution used in the 60s in overcrowded nurseries in Colombia where infants shared what incubators were available. When - in a desperate bid to save them nurses tucked the newborns under their mums’ clothing, as if in a kangaroo’s pouch, they saw more babies not only survive but thrive.

Research looking into the benefits of Kangaroo Care has now proven that, in developing countries where a lack of incubators and equipment to provide intensive care is still an issue, a baby’s chances of surviving are increased when they have regular skin-to-skin time with their parents.

In the UK, the USA and other western-European countries, Kangaroo Care still has many benefits. Not only can it improve the condition of the baby, it can improve the bond

between babies and their parents through the skin-toskin contact they have.

How it works?

The parent giving Kangaroo Care helps maintain their baby’s body temperature and so the baby requires fewer calories to stay warm.

But the benefits go beyond staying warm. We know that Kangaroo Care can help stabilise a baby’s heart rate, regulate breathing, improve oxygen saturation levels, reduce stress, support more rapid weight gain and more rapid brain development, reduce crying, increase alertness and help with breastfeeding.

Not only can it improve the condition of the baby, it can improve the bond between babies and their parents

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World Prematurity World Prematurity Day 17 November

premature birth kills 1 baby every

30 seconds

15m babies are born too soon every year

premature b

37 80% 5%

babies born before 37 weeks are classed as premature

USA 517,400

Brazil 278,689

Ni 77

of premature babies are born between 32 and 37 weeks of gestation

of premature babies are born before 28 weeks of gestation

Malawi has the world’s Belarus has the world’

75% of deaths can be prevented even without intensive care through

Warmth

Nutrition

Early and exclusive breastfeeding is best

Skin-to-skin holding and swaddling help babies stay warm

Hygiene

Breathing

A clean environment helps reduce the risk of infections

At less than £1 per shot, steroids help babies’ lungs mature in the womb

6,500

views of Bliss’ World Prematurity Day video last year

56,

likes o Prema Facebo

y Day in numbers

60K

the number of premature births in the UK each year

India 3,519,100

China 1,178,600

the survival rate for premature babies in low income countries

s highest preterm birth-rate ’s lowest preterm birth rate

,000

on World aturity Day ook page

1m 10% 450K

number of children who die from premature birth each year

births each year

igeria 73,600

50

the number of countries taking part in World Prematurity Day

deaths could be prevented through benefits of Kangaroo Care

More children die from being born too soon than from AIDS, malaria or diarrhoea

95% of women in high-income countries receive steroid shots in preterm labour

13m

people reached through 9,000 tweets with the hashtag #worldprematurityday in 2012

5% of women in low-income

countries receive steroid shots in preterm labour

World Prematurity Day November 17

World Prematurity Day 17 November

The power of hugs When Matt and Vicky Gardner saw their son for the first time, in an incubator attached to wires and tubes, a feeling of helplessness overcame them. Thankfully, Kangaroo Care allowed them to comfort their son and develop a bond between the family that is still growing, thanks to the power of hugs. By Jenny Hulme

M

Initially, the Gardners were worried about picking Rhys up due to his fragile state but they soon became fond of having Kangaroo Care time with their son

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att and Vicky find it hard to put their baby son down.

“When we first brought him home people would tell me we’d never get him into a bedtime routine letting him sleep in our arms,” laughs Vicky. “But it feels so precious just holding him close.”

Those people will struggle to ever fully understand what this family went through when Rhys arrived 14 weeks early one wintry Saturday at the beginning of February 2012.

“I am in the military and am used to keeping things under control,” says Matt. “Arriving at the hospital, seeing the rush of staff into the room telling each other it was ‘too soon’ and watching their efforts to slow things down...

In that moment everything was out of control and I felt helpless.”

“We didn’t think he would survive,” says Vicky. “It hadn’t crossed our mind this could happen, and we knew nothing about premature birth.”

Like any parents, Matt and Vicky were desperate to do anything they could for their newborn son who was now fighting for his life. But like many parents of special care babies, they saw how dependent Rhys was on the doctors and nurses and didn’t think there was anything they could do for him.

“I found the time that Rhys spent in his incubator difficult,” says Vicky. “There was a feeling of helplessness.

It was very frightening looking at his frail little body and all

World Prematurity Day 17 November

the tubes and equipment in there with him.”

However, it wasn’t long before the nurses on Rhys’ unit began talking to Matt and Vicky about comfort holding and Kangaroo Care, and the many benefits it would have not only for their son but for them as parents too.

“It was in Leeds we were first able to touch Rhys,” says Matt.

“And even then we could only

Feeling our hearbeat, smelling our smell, lying skin-to-skin could (all) play an important part in his recovery put our hand on his skin - not stroke or embrace him.

“You cannot imagine what it was like when we did first get to hold him; he was three days old and only 1lb 10oz.

I was so scared, exhausted and anxious, he felt like the heaviest thing I have ever held in my life.”

Rhys suffered a number of complications during his time on the unit, culminating in surgery to cure necrotising enterocolitis (NEC). All of this left

Rhys in a fragile state.

“It really limited the amount of time we could spend giving Kangaroo Care early on,” says Vicky. “However the nurses were very encouraging helping me and Matt to touch and cuddle Rhys as much as we were able to.”

And despite these initial difficulties and Vicky’s concerns at picking up her son, she is quick to acknowledge the powerful impression hugging him for the first time left.

“The first experience of Kangaroo Care most definitely helped the bond between me and Rhys and I loved to hold him whenever I could if it would help comfort and calm him. The nurses told us how feeling our heartbeat, smelling our smell, lying skin to skin could play an important part in his recovery.”

Rhys finally arrived home on 5 July, nearly 22 weeks after his birth.

Matt and Vicky were told they could now, finally, treat him like a normal newborn.

This autumn, Matt embarked on a fundraising run to raise money for the hospitals who

Rhys is showing few signs of his prematurity now. Mum Vicky says that it still “feels precious” to hold him close, even today

helped care for Rhys and to raise awareness of premature birth and why - whatever people say - they are entitled to hold their son just a little bit longer than they should before he settles to bed.

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World Prematurity Day World Prematurity November 17

Day

17 November

Join us on World Prematurity Day and help change the lives of babies born too soon Light a little light for Bliss Hold a Little Lights Walk with your friends and family to commemorate the 15 million babies born premature every year.

Invite everyone you know and encourage them to bring a candle or torch to light the way. Ask them to donate ÂŁ5 to take part and to raise sponsorship, and you will be raising valuable funds for Bliss.

Share a hug This year’s theme centres around hugs and the importance of Kangaroo Care to premature babies. Show your support by hugging a loved one and share your photos with us on our Facebook and Twitter pages.

Wear purple!

The international colour for World Prematurity Day is purple, so you could dress in purple to show your support, and ask your friends and family to do the same.

Make sure to take some photos and share them with us.

Support Tiny Hands for Bliss Cassana Rason has written and recorded Tiny Hands, a single based on her experience of having three premature babies, to raise money for Bliss.

You can buy it from from tinyhandsforbliss.org.uk

For more information on how to get involved on World Prematurity Day go to bliss.org.uk/wpd 20 Little bliss

Autumn/Winter 2013

Support for families

Bliss launches new video series: Introduction to a neonatal unit We are thrilled to announce the launch of our new series of videos that introduce families to life on a neonatal unit.

T

he first of their kind, this set of five videos introduces viewers to neonatal care, showing the equipment they may come across, how parents can get involved in their baby’s care and what support is available to families of babies during their time on a neonatal unit.

We know that walking onto a neonatal unit for the first time can be a daunting experience; many parents have no idea what to expect and are shocked by the heat, noises, machines and wires.

Their baby may have come early unexpectedly and they may have no idea what a neonatal unit is, let alone what to expect once they are on it.

These videos are also for those who know their pregnancy is high risk and want more information

about what to expect if their baby does come early.

These videos also help to give clarity to the friends and support network of those affected.

Bliss Champion Helen Jackson said, “These videos are a fantastic resource for families and friends of special care babies. Having a baby admitted to neonatal care is a shocking experience and I would have valued having something like this when my son Thomas was born nine weeks early.”

Bliss Family Support Officer Kirstin Akan-Brown said, “We want the videos to be a useful resource for families, to show them what they might face on their journey and what support is available to them.

We hope people find it informative and helpful.”

Little bliss

Video series: 1) Introduction to a neonatal unit 2) Entering the unit for the first time 3) How you can get involved in your babies care 4) Support for families of special care babies 5) Going home

To view them go to:

bliss.org.uk/ neonatalvideos

Autumn/Winter 2013 21

Feature In this

issue

Top marks for Bliss campaign In the last issue of Little bliss, we looked at some of the challenges facing premature born children when starting school.

We now have great news to report. Thanks to the support of our campaigners and through working with parents, we’ve secured vital advice from the Department for Education that should make life easier for all parents.

It shows the impact campaigning can have and why we couldn’t achieve any of the things we do without your support.

I

n July, the Department for Education published ‘Advice on the admission of summer born children’; guidelines that clarify parents’ right to ask admissions authorities to review their premature child’s school start date.

The publication of this advice, a result of the combined campaigning efforts of Bliss and parents, will make a massive difference to thousands of parents. Premature born children can face the prospect of starting school a year earlier than if they’d been born at term even though some children may not be ready.

The guidelines make it clear that local Admissions

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Authorities cannot have ‘onesize-fits-all’ policies and must take into account the specific needs of each child. It is an important first step in the campaign to ensure parents are listened to and have flexibility for their children if they need it.

“The advice will bring about clarity for parents,” says Carmel Barrett, Bliss Family Support Manager. “It will mean they know which questions to ask and where they stand during the process.”

After hearing from a number of parents who were worried that their child was starting school too early but who felt that local authorities were not listening to their concerns, Bliss began working closely with them on the issue of delaying

and deferring school entry.

We raised the issue with the Department for Education and worked with officials on developing the new advice which we were delighted to see published this summer.

Rebecca Rennison, Bliss Campaigns and Policy Manager, attributes the success of the campaign to the power of parents’ collective voices. “We were able to show the Department for Education the very real challenges parents were facing and the impact this was having on their children. This made a huge difference; it brought the issue to life and made it hard for anyone to argue against the need for change.

“It shows the difference campaigning can make to the everyday lives of families and just how powerful parents’ personal stories can be.”

The impact of the advice and the work of Bliss was recognised in

a parliamentary debate organised by Annette Brooke MP, where Bliss was publicly thanked for their work. However, we know more still needs to be done. Bliss will be

It shows the difference campaigning can make to the everyday lives of families monitoring the impact of the advice, and continuing to push for a review of the School Admissions Code to reflect the specific barriers experienced by some premature born children.

“Whether it’s challenging school admissions policies, campaigning for better staffing levels or calling for greater financial support for the parents of premature or sick babies, we couldn’t do any of it without the support of our parent campaigners,” says Rebecca.

The campaign doesn’t stop here!

We need your help to keep this campaign going.

Visit our website and sign up now to support this campaign and Bliss’ wider campaigns work.

Together we can help make a difference to the lives of premature born children and their families. campaigns@bliss.org.uk bliss.org.uk/campaigns

Bliss relies on a network of parents and campaigners to influence change for special care babies and their families. If you’d like to make a difference on a local or national level contact the Bliss Campaigns Team.

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In this issue

You’ve got a friend in me This autumn, Bliss launched a brand new pilot scheme to provide peer-to-peer support to families. Bliss Buddies have first hand experience of neonatal care and will provide emotional and practical support to parents after their baby has left neonatal

T

he transition from unit to home is a positive step in any baby’s neonatal journey. After what can be months of watching their baby being cared for in a hospital, finally being able to take their little one home is something that parents dream about.

Yet despite reaching this long-awaited milestone, many parents say that this can also be a very challenging time as they lose the daily support of the doctors and nurses and other parents on the unit, leaving them feeling anxious and isolated.

Parents have shared with us that having someone to talk to who’s had a baby in special care themselves and who can relate to what they’re going through would make a huge difference.

That is why we developed our Bliss Buddy Scheme.

Bliss Buddies have first-hand experience of local neonatal services and are able to provide both emotional and practical support to parents after their baby has left neonatal care.

Stephanie Cokeley, one of

our Bliss Buddies, talks about what inspired her to become a Bliss Buddy: “I have six children and three of those were born prematurely. My last child, Rhys, suffered several setbacks whilst on the unit including a Grade 4 haemorrhage and he is now severely disabled. Whilst he was on NICU I turned to Bliss for support and it really was a lifeline for me. I suppose I wanted to give something back, to help other parents going through a similar journey.”

Anyone with first-hand experience of neonatal care - parents, family members or

16 Little bliss l Autumn 2008 2013 24 Autumn/Winter

health professionals – who is willing to share the knowledge they have gained and provide a

Having someone to talk to who’s had a baby in special care themselves... would make a huge difference listening ear can become a Bliss Buddy.

Bliss offer Buddies a full induction, ongoing training, information and guidance and a network of other volunteers in

their region to speak to and share ideas.

Stephanie has already worked with a number of families and would encourage anyone who might be interested in becoming a Bliss Buddy to get in touch. “I have supported a family who had a child that was brain damaged like my son. I was glad that they knew they weren’t alone in how they were feeling. Another parent I supported for some time during their stay on the unit sent me a lovely text saying, ‘We’ve gone home! Thank you so much for all your support’ That text made me cry! It was a great feeling to have helped them on their journey’.”

If you would like more information on becoming a Bliss Buddy, details on the role and application process can be found on our website bliss.org.uk/bliss-buddies If you are a parent on NICU and would like the support of a Bliss Buddy, please contact our Family Support Team on 0500 618140 or by email hello@bliss.org.uk

Why become a Bliss Buddy?

“I wanted to help other families going through similar things to what I experienced with my daughter. It can be overwhelming for families when they finally get to take their babies home, so Bliss Buddies are here to give advice from the point of view of someone who’s been where they are.’’

What difference do Bliss Buddies make?

“It was a bit scary when we first brought our daughter home and we didn’t really know any other parents in the same position as us who would understand what we were dealing with.

Having a Bliss Buddy to talk to who had been through it before, who could relate to us and offer us information and advice was a huge help.”

Volunteer for Bliss We have a wide variety of opportunities. For more information, please contact Bliss on 020 7378 1122 or go to www.bliss.org.uk/volunteer Little bliss

Autumn/Winter 2013 25

Get involved - Cake A Difference In preperation for Cake A Difference week in February, why not play our Cake A Difference quiz? Match your answers to the cakes below to find your perfect cake to bake.

1. When dining out would you: a) only have a dessert occasionally b) skip a starter so you can have a pudding c) have three courses, it’s a treat d) forget dinner, go straight to dessert 2. What’s the best time to eat cake? a) as a mid-morning snack, so you

have plenty of time to burn off the calories b) as an afternoon snack to help you

get through a slump c) as dessert, a perfect way to end your day d) any time of the day, sweets are my

favourite thing 3. What goes best with cake? a) nothing, it’s more than enough b) a cup of coffee or tea c) a glass of wine or cocktail d) ice cream, or more cake

buy a special cake TO HELP A SPECIAL CARE BABY

14-16 February 2014 BLISS.ORG.UK/CAD

4. While eating cake you like to: a) read the newspaper or do the crossword b) curl up in an armchair with your book c) do a bit of internet shopping or

research your next holiday d) lie on the sofa and watch your

favourite film 5. Who’s your favourite TV chef? a) Teresa Cutter b) Mary Berry c) Jamie Oliver d) Nigella Lawson If your answers were mostly: A - Courgette cake B - Vanilla cupcakes C - Lemon and poppy seed D - Red velvet cake

For full recipes and more information on taking part in Cake a Difference, please visit the Bliss website

bliss.org.uk/cakeadifference 26 Little bliss

Autumn/Winter 2013

2014

Get involved - cycling events

“Awesome day all round. Thank you Bliss for making it possible - gives you a hint of what the Olympics were about” Bliss Rider, 2013

Prudential RideLondonSurrey 100

What – A 100 mile cycle, based

on the 2012

mpic Park in y!) hill Stratford, down to leafy (and finally finishing at the Mall.

Where – Setting off from the OlySurrey, before When – Sunday 10 August, 2014 fee and £500 min fundraising pledge

How much – A £50 registration

involved in,

Why - It’s THE cycling event to beclosed roads

Nightride

r

62 mile cy cle aroun d London overnight ,

Where – S

Palace or

Olympic route

ugh your only chance to cycle thro don Lon in Central

What – A

etting off from Alex Crystal Pa andra lace on a circular ro of London ute

When – 7-8 How muc

June, 2014

h – A £39 re gistration £175 fund fee and raising ple dge Why – Exp erience Lo ndon by b night, alo ng with 4 ike at ,000 othe r riders!

Get in touch 020 7378 5745 events@bliss.org.uk

Thankyou!

Celebrating the amazing efforts of our wonderful supporters Marie Bailey - Lily’s Ball After giving birth to her daughter Lily, 12 weeks early in 2006 Marie has been giving back to Bliss by organising Lily’s Ball each year ever since.

This year will be Marie’s fifth ball and she hopes proceeds from the event will boost the total amount she has raised for Bliss over the years to over £30,000 - an amazing amount!

It takes a huge amount of time each year to organise Lily’s Ball and we are truly thankful for all the hard work that she puts into planning such an amazing annual event.

Thank you Marie!

Natalie Anderson In August, Emmerdale actress Natalie Anderson won ITV’s Your Face Sounds Familiar and in doing so won over £80,000 in prize money for Bliss.

Natalie became involved with Bliss in 2009 when appearing in the musical Wicked which had close ties with the charity at the time.

She has supported us in a number of ways since, culminating in this fantastic achievement.

Thankyou Natalie!

28 Little bliss

Autumn/Winter 2013

Thankyou!

Thankyou Clockwise from top left:

Catherine Allcott’s campaigning work secured a debate on neonatal care in the House of Commons; the Leeds Neonatal Service allowed Bliss onto their unit to film the new Introduction to a neonatal unit video series; Nicky Emsley and Helen Jackson organised a Bliss Buggy Push in Leeds that raised over £1500!; Michaela Southworth, whose son Nathan was born prematurely, spends every Tuesday running two Bliss Family Groups in Whitechapel, London; Sainsbury’s Property Division has raised over £160,000 for Bliss over two years; Chris Hempsall, whose son caught pneumonia when just an hour old, took part in the Monster Swim in Loch Ness raising £1,000; and the Cosmic Puffin festival, held every May on Mersey Island, Essex, has raised over £6,000 for special care babies

Little bliss

Autumn/Winter 2013 29

Today, I found my

FREEDOM

TRAVEL

SYSTEMS

BIRTH – 17KG

Find what you’re looking for with a BOB® stroller.

Where safety meets style • Create your own look – 3 chassis and 6 fabric options • Elegant, purposeful design • Suitable from birth

www.bobgear.co.uk

Integrated CLICK & GO® adaptors (Fit the BABY-SAFE infant carriers, BABY-SAFE Sleeper or Carrycot directly onto the pushchair chassis)

www.britax.co.uk

I would like to make an extra donation to help premature and sick babies Your gift will make a world of difference to parents of premature and sick babies.

Call to donate: 020 7378 5740 (If your name and address details are incorrect, please amend them)

I would like to give:

£30

£15

£5 OR:

My own amount

£

(please specify)

I enclose a cheque/postal order made payable to Bliss OR please debit my Switch / Maestro / MasterCard / Visa / American Express / Charity Card (please indicate) Card number: Start date:

M M Y Y

Expiry date:

M M Y Y

Signature

Issue number (if Switch/Maestro)

3 digit security code (We cannot process donations without this)

Date

Please send us your completed donation form in the envelope provided, to: FREEPOST RRAR-CEHB-KRTA, Bliss, 9 Holyrood Street, LONDON SE1 2EL We usually write to thank our supporters for their donations. If you would be happy not to receive a thank-you letter, please tick this box If you would rather not receive any kind of communications from Bliss, please tick this box 9 Holyrood Street London SE1 2EL t 020 7378 1122 f 020 7403 0673 e ask@bliss.org.uk www.bliss.org.uk. Freephone Helpline 0500 618140 Registered charity no. 1002973 Scottish registered charity SC040878

Bliss can claim 25p for each £1 you give if you are a UK taxpayer.

You must pay an amount of income tax and/or Capital Gains tax at least equal to the tax that Bliss reclaims on your donations in the tax year. This does not include Council tax or VAT. Tick those applicable* I would like Bliss to treat this and any donations I make in the future as Gift Aid donations until I notify you otherwise.

I would like Bliss to claim all donations I have made since 6 April 2008 as Gift Aid donations.

u o y k n a h T

Bliss is here to help you Helpline

Call Bliss for advice and support.

Our freephone helpline is open Monday to Friday (9am-9pm).

Freephone

0500 618140 Messageboard

Visit the Bliss messageboard and speak to other parents of special care babies.

Community

Join our online community by liking our Facebook page or following us on Twitter.

Family groups

hom e Going on oxygen

A place where families with special care babies and children can meet and share experiences in a friendly environment.

Free advice booklets

For comprehensive advice on a range of issues concerning special care babies call the helpline or visit our website.

bliss.org.uk

Visit us online. We have messageboards, parents’ stories, advice and information, downloads and much more.