Little bliss issue 33 (Autumn-Winter 2014)

Littlebliss The little magazine for Bliss’ biggest supporters Issue 33 - Autumn/Winter 2014 bliss.org.uk/littlebliss

School admissions

Bliss nurses

Read how Bliss Nurses are supporting families around the UK

AND MORE: NEWS l LOOK AT THEM NOW l BABY CHARTER GRANT FUND l WORLD PREMATURITY DAY l VOLUNTEERS l PRUDENTIAL RIDELONDON l CHRISTMAS APPEAL Issue 32_cover_v2.indd 1

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Looking to the future

A

fter more than four years at Bliss – and 16 issues as Editor of Little bliss magazine – it’s with great sadness that I bid farewell to this wonderful organisation.

I’m proud to say that during my time at the helm, not only have I overseen some huge changes to this magazine, it has also been my privilege to be a part of some major changes within the charity as a whole.

The creation of regional offices and the resulting increase in the number of volunteers we have around the country means that Bliss is now able to support more families of special care babies than ever before.

Bliss is now considered the leading voice on issues relating to neonatology. This allows the charity to speak on behalf of babies and their families, to influence politicians and the Department of Health, and respond to

key issues in the media that gain national coverage. Bliss promotes and shares best practice among healthcare professionals across the country who we work in partnership with.

The most exciting development is the creation of our Bliss Nurse programme, which is providing a lifeline to parents across the country (read more about this on page 12).

All of this work has contributed to tens of thousands of babies and their families receiving better care and support during their time in neonatal care and beyond.

It is for these reasons that I will continue to be a huge supporter of Bliss and the work this charity does many years after I have left my role here.

I’m confident that this issue of Little bliss will not only demonstrate why your continued support for Bliss is needed, but also why it is deserved.

All the very best for the future, Mark Gorman, Editor

Registered charity no. 1002973 Scottish registered charity SC040878

8-9 School admissions

20-21 Bliss baby charter fund

26-27 RideLondon

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On the cover...

About Bliss

12-18 Bliss nurses

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

As Bliss steps up its campaign to provide specialist care in neonatal units, we met with three Bliss Nurses and the families they have helped to hear about their experiences.

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

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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

Jim’s journey from neonatal care to the present day

24 Volunteering

Support that goes beyond the neonatal unit

The Little bliss team Editor: Mark Gorman Design: Joana Águas, Jess Milton, Contributors: Gemma Pritchard, Sarah Miles

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28 Thank you

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

Bliss thanks our supporters

Features 8

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School admissions

Factsheet will help families who are considering delaying school start date

20 Bliss Baby Charter Grant Fund See how units improved their facilities with the Bliss Baby Charter Grant Fund

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.

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22 World Prematurity Day Join us for this year’s World Prematurity Day

© Bliss 2014. No part of this publication may be reproduced without prior permission from Bliss.

26 Prudential RideLondon Be part of our amazing team

Get in touch

Go online

Donate

Get involved

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News

Ha rp er t an d Dr Dawn di ng Je nny Fros clu in ds ar Aw t Bi g He ar iti es at th e 2014 a host of ce le br by ed in jo e er Fa m ilie s w

Big Heart Awards Each year Mother & Baby magazine hold their Big Heart Awards in support of Bliss, to celebrate the people who’ve made a difference to the lives of special care babies and their families.

On Monday 10 March the awards were presented to their winners, including two winners specially chosen by us, recognising their amazing achievements in helping babies born too soon, too small, too sick.

The award ceremony was attended by a host of celebrities, including Danielle O’Hara, Jenny Frost, Imogen Thomas, Laura Hamilton and Dr Dawn Harper.

The winners of the two Bliss awards were: Bliss Family Group of the Year: Cake Club at the Royal London – Michaela Southworth The Cake Club is part of the wonderful Bliss Royal London Family Group in Whitechapel.

It is run by Michaela Southworth, who knows exactly how valuable this support can be, after spending time on the unit herself with her own son Nathan, who is now four. Cake has proved to be a great way to help get the diverse mix of parents at the units to come together to share their experiences and support each other.

Michaela gave an example of what the group can achieve “A mum of a 24 weeker came in initially very shocked. After a few weeks of attending the Cake Club, she herself was starting to support new parents facing the same shock she went through”.

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

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Award win ne rs inc lud ed Bli ss sup po rte r an d vol un tee r Ma rie Ba iley an d Bli ss Fam ily Grou p, Autumn/Winter 2014

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Ca ke C

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f Cl ai re Irv in. ’s Ed ito r in Ch ie by Ba & r he ot M th e awar ds with w ho pr es en te d

Other award winners: A family you can count on: Elaine Joel Bliss Volunteer of the Year: Marie Bailey Marie Bailey has been a Bliss supporter since 2008, when she had her own experience of premature birth with her daughter Lily.

“Lily was born at 28 weeks and Bliss helped me and my husband Richard so much. The support was amazing and helped us to stay positive during the nine weeks Lily spent in special care.”

Marie has raised an incredible £40,000 for Bliss since then, through a whole host of inspiring fundraising efforts, including the annual ‘Lily’s Ball’. Last October she raised £9,740 from Lily’s Ball alone, with almost 300 people attending.

Fantastic father: James Nugent Outstanding neonatal unit of the year: The Lister Hospital Brilliant big sister: Ellie Cray Beyond the call of duty (HCP): Kit Pennington, nursery nurse at Salisbury District Hospital Against all odds baby: Noah Wall Inspirational friendship: Stephanie Dewey Mum in a million: Hayley Duffety

Ca ke Clu b run by Mi cha ela So uthwo rth.

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19/09/2014 11:09

News Bliss appoints new Chief Executive Bliss is thrilled to have appointed Caroline Davey as our new Chief Executive.

Caroline joins Bliss from Gingerbread, the national charity for single parents where she is the Director of Policy, Advice and Communications. There she leads on policy and campaigning work as well as overseeing the delivery of multi-channel information and advice services for single parents. Caroline is also

a trustee of Crisis, the national charity for single homeless people.

Caroline has spent much of her career working in organisations supporting families. She is bringing her breadth and depth of knowledge and skills to lead Bliss as we embark on developing an exciting new five year strategy.

We are really excited to welcome her in November.

Former Bliss Chief Executive receives OBE Andy Cole OBE, who left Bliss earlier this year after almost eight years as the charity’s Chief Exec, has been awarded an OBE in Her Majesty the Queen’s Birthday Honours List.

Andy was given this award in recognition for his services to neonatal care. He said: “I am deeply honoured to have had Bliss’ work supporting families and championing neonatal services recognised in this way. I take this as a tribute to the impact of Bliss’ work over 35 years and deserved recognition of the dedication of Bliss’ staff, 6 Little bliss

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trustees and many thousands of supporters and volunteers, who give so generously to help the charity. Most importantly, it is recognition of the incredible work that nurses and doctors on neonatal units across the country do every single day and the challenges which families and their babies overcome.”

Keith Soper, Chair of Trustees added: “On a personal level, I am delighted for Andy.

He has worked tirelessly in his pursuit of high quality services for all babies and their families. He has been pivotal to our progress as a

charity and it is a huge honour for Bliss to be associated with this prestigious and much deserved award.”

Andy is now the Director of Corporate Affairs at the leading disability charity, Leonard Cheshire Disability.

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News Bliss launches campaign in Scotland and Wales

Aled Roberts AM at the Not a game Wales launch

Our new campaign, ‘It’s not a game: the very real costs of having a premature or sick baby’, which calls for better financial support for parents while their baby is in neonatal care, has gone nationwide. We launched our campaign in Scotland and Wales respectively in June, citing statistics relating to neonatal care that are specific to these nations of the UK.

The reports highlight that the total costs, and where they come from, vary for parents across Britain. For example, while few hospitals charge for car parking in either Scotland or Wales, parents have to travel further to hospital, and spend more to do so.

Both launches were a big success: the findings of the report were discussed enthusiastically with a number of politicians from Scotland and Wales.

The campaign in both countries has been steadily gaining momentum. Cara Hilton MSP has tabled a motion calling for the Scottish Government to welcome the report and commit to meeting our recommendations. Thanks to our fantastic campaigners, enough MSPs have signed the motion for it to be debated in Parliament!

In Wales, two Assembly Members have committed to show their support by visiting neonatal units. This will give them some understanding of what life on a neonatal

unit is like, and the struggles parents face day-to-day.

Cara Hilton MSP and mum of a special care baby

Rhoda Grant MSP, Scottish Shadow Wellbeing Minister

If you would like to read any of these reports or find out how to get involved in the campaign where you live, simply visit our website for all the information you need to get started bliss.org.uk/not-a-game Little bliss

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School admissions

Bliss launches school admissions factsheet Our information will help families who are to considering delaying their child’s school start date in England

While most premature born children will start school in the term following their fourth birthday, some children may benefit from starting school a little later. This is especially true for children born prematurely during the summer months who were due in Autumn, meaning they start school a whole year earlier than if they had been born full-term.

There is no legal barrier preventing a child starting reception at five years-of-age in England. Yet, many parents have told us that the admission authorities (the school or local authority in charge of allocating a school place to your child) they have spoken to have been reluctant to delay school entry.

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That’s why we have put together a Delaying primary school entry in England factsheet. It tells you everything you should know about delaying entry to reception year.

The resource guides you through: Whether your child is eligible to delay.

Why your child may benefit from delaying.

The current school admission law and guidance.

How and when to apply – including a handy checklist of things to include in your application pack.

We have also written a supporting letter which explains to admission authorities why, for some premature born children, it is better they start school according to their expected,

Autumn/Winter 2014

rather than actual, birth date.

Deciding to delay your child’s school start is a big decision, and we recommend reading our factsheet carefully before deciding what is best for your child. You can find the factsheet and supporting letter at bliss.org. uk/help-and-advice. If you would like more advice please contact our helpline on 0500 618140

Important Following concerns raised by Bliss and many parents on this issue, the School Admissions Code might be changing, and the government is currently consulting on new rules which affect children starting school in 2016/2017.

If this will affect your child and you want to find out more about these changes, or would like any more advice, please contact our helpline.

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School admissions Tiffany and Ian’s story When Tiffany and Ian’s twins Ella and Declan arrived at 25 weeks in July 2011, imagining them starting school was the furthest thing from their minds. Sadly, Declan didn’t survive, but after 19 weeks in hospital Ella finally came home.

Being born so early meant Ella, who has recently turned three, would start school a year earlier than she would have done had she been full term. She was also small for her age, which strengthened Tiffany’s resolve to delay Ella’s school start. ‘’It was the little things – like Ella being able to fit into a school uniform. We decided it was best for her to start school in the year she should have been placed in; I knew she’d benefit from having an extra year to mature.’’

In 2013, the Government issued guidance telling admission authorities they must consider delaying requests for summer borns. Tiffany included this guidance in an application pack, sending it in along with assessments and letters of support from doctors and Bliss. While the process was difficult initially, Tiffany and Ian persevered. ‘’We found it difficult because there wasn’t anyone we could ask for advice; it didn’t seem to be a common request.’’

One month later, they received excellent news: their application had been a success and Ella will now start school a year later, in September 2016. Tiffany says, ’’We were so shocked!

My advice would be to keep going – even if you get a negative response at first.’’

Get involved We know every parent has a different experience while they try to secure their child’s delayed entry into primary school.

The outcomes can vary even between applications to the same school or local authority.

We want every parent and child to have a fair outcome. That’s why we need your help so we can push for a simpler and more standardised process.

The best way you can do this is by telling us your experience. That way we can see what admissions authorities do well, and where they need to improve.

If you’d like to share your story, simply email it to campaign@bliss.org.uk With the school admissions code likely to change next year, we will be regularly updating everyone about our schools campaigning work. Make sure you never miss out on updates by signing up to our campaign newsletter at bliss.org.uk/action-for-bliss.

Get in touch campaign@bliss.org.uk

Go to bliss.org.uk/action-for-bliss

Call us 020 7378 5742

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Look at them now

Birth

Every issue we follow the amazing, inspiring and sometimes miraculous journey of a special care baby. In this issue we meet Caroline Hearsey and her son Jim, who was born at 30 weeks.

Jim, was born weighing just over 3lb 6oz.

Caroline’s waters broke prematurely at 23 weeks and she was closely monitored by the medical staff. After she became unwell at 30 weeks they decided to deliver Jim early by emergency c-section.

Jim needed treatment to help him strengthen his lungs and was fully ventilated for two days. He also had a heart murmur suffered apnoeas, and had difficulties with feeding.

“The first night I stayed up for hours just holding him. We couldn’t quite believe he was home.”

Day 4

7 wks

7 wks

After an up and down few weeks that saw Jim move back and forth between intensive care and special care, Jim’s parents were able to take him home three weeks before his due date.

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Look at them now Our experience on the unit was a very positive one – the staff at the Queen Alexandra hospital were incredibly supportive and we also made some amazing friends who we are still in touch with now. Caroline Hearsey, Jim’s mum

“He is full of life; happy, witty and a bit naughty!”

Jim is continuing to grow well and is over the fiftieth centile in height for his age; he looks just like any other four year old now.

“Jim turned four in July.

He does have some slight sensory issues, some occasional breathing concerns, particularly in winter, and feeding issues still but we are coping together.”

4 yrs

4 yrs

Jim’s older sister, Lilli, is incredibly protective of him and they won’t go anywhere without each other.

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Today

4 yrs

Jim currently goes to nursery and is due to start school next September. Having been born in July when he was due in October, Caroline decided to wait until next year to give him the best possible start.

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Well done to all the fantastic 2014 Bliss Buggy Pushers.

Britax would like to say a massive thank you to everyone who organised and took part in the Bliss Buggy Push events in 2014.

To take part in one of our Buggy Push events in 2015

call 020 7378 1122 email events@bliss.org.uk

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19/09/2014 11:17

Bliss Nurses - supporting families As Bliss steps up its campaign to provide specialist support to all families with babies in neonatal care, we sent Sarah Miles to meet three Bliss Nurses and speak to some of the parents they’ve helped ‘Stressful’, ‘emotional’ and ‘exhausting’ are just three of the words parents of babies in neonatal care use to describe their experience. Diverted from the expected course of bringing a healthy, full-term baby home from hospital, they feel scared, helpless and unsure about how they can care for their premature or sick baby. Add in extra worries about travel costs, arranging accommodation and expressing milk and it’s no wonder some parents struggle to cope.

That’s where Bliss Nurses come in. They are unique nursing roles that focus on the needs of parents, helping them to bond with their babies and get more involved in their care. Free of clinical responsibilities, Bliss Nurses have time to sit and listen to parents’ concerns and offer emotional and practical support.

Bliss Nurses are there for parents so they can be there for their babies. They can help terrified mums and dads hold their baby for the first time, and sit with them while they do.

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Bliss nurses

“Seeing a familiar face made a big difference” Three families told Bliss how having the support of a Bliss Nurse helped them cope with the ups and downs of having a baby in neonatal care.

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Liz Robinson and Ben Randall were supported by Bliss Nurse Cheryl Curson during their daughter’s stay at Birmingham Heartlands Hospital “When Amelia was born at 23 weeks and 6 days, we were told she had a 25 per cent chance of survival. It took the doctors four hours to resuscitate Amelia and get all her lines in. She weighed just 520g (1lb 2oz).

“Our four month journey through NICU was extremely hard but talking to Cheryl gave us hope. We’d been told to take things one day at a time and Amelia had a long list of issues, including a hole in the heart, CLD (Chronic Lung Disease) and ROP (Retinopathy of Prematurity), but Cheryl told us about other babies who had overcome these problems.

“It was a 38-mile round trip to the hospital for us, and we were spending £300 a month on petrol and parking. Being at the hospital 10 to 12 hours every day, we were also spending a fortune on food and drink, not to mention the time my partner Ben was taking Our journey off work. It was a big worry. through NICU Cheryl gave us advice on help was hard with travelling costs and told but talking to us about websites that might Cheryl gave offer financial support. Without us hope Cheryl we wouldn’t have known these sources of help existed or how to apply for them. It meant we could focus on Amelia.

“Amelia has been home for seven weeks now and is really active, smiling and making noises.

Before we left the hospital Cheryl introduced us to new mums and dads on the unit. We spoke to them about our incredible journey to give them hope - just as Cheryl did for us.”

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Bliss nurses Victoria Pawley and Mike Wray were supported

by Bliss Nurse Sue Thompson during baby Jacob’s time on the neonatal unit at James Cook Hospital, Middlesbrough.

Stacey and Chris Skinner met Bliss Nurse Julia Shirtliffe at Norfolk and Norwich Hospital while Stacey was pregnant with Miles, and have been supported by her ever since.

“Jacob was born at 23 weeks and two days.

When he cried two minutes after being born – an experience I never thought we’d have – we felt elated.

“At first I was numb. ‘Why us?’ We didn’t know whether Jacob would live or die so were taking every minute as it came. A few days after his birth I was staring at the incubator, not allowing myself to think of the Sue encouraged future, when Sue us to enjoy our introduced herself. time with Jacob She sat with me for and to be hopeful over an hour, hankies at the ready, just listening. Sue explained things, expanding on what the doctors had told us, but most importantly she encouraged us to enjoy our time with Jacob and to be hopeful.

“I was too scared to hold Jacob at first – I thought by bringing him out of the incubator I was putting him at unnecessary risk – but Sue explained the benefits of skinto-skin contact and promised me she’d sit with me while I had cuddles. She built up my confidence to hold him and I was amazed at how he relaxed and slept soundly afterwards.

“I tend to bottle things up and put on a brave face but because Sue wasn’t family I could unleash my emotions. I could talk about anything, have a big cry and she’d take some of the weight off my shoulders. She went that extra mile to find answers to our questions and other families for us to speak to. I don’t know how we’d have got through those four months without Sue’s support.”

“I was 28 weeks pregnant when we found out that Miles had ascites, a condition that means he has too much fluid in his abdomen. Our consultant arranged for Julia to attend one of our weekly scans and she has supported us since that day.

“Nothing can truly prepare you for the shock of seeing your child in intensive care but I’m glad Julia showed Julia made it us around the neonatal unit possible for before Miles was born. Ascites us to do this usually comes with other issues as a family and Miles was given a 60-80 per cent chance of survival so we weren’t sure what to expect. “When Miles was born at 34 weeks Julia went to the neonatal unit so Chris had someone he knew there when he first saw Miles. She then came to the postnatal ward to tell me how he was. Seeing a familiar face made a big difference and Julia was there for us throughout Miles’ 15 day stay. She was great with Toby, our three-year-old: if he got distressed during a visit Julia would take him to the playroom to do crafts and draw a picture for Miles. She made it possible for us to do this as a family.

“Unfortunately Miles was admitted to the children’s ward after two weeks with Chylous ascites – a rare condition that means he can’t break down fat. Julia supported us straight away.

I’ve been sitting by Miles’ cot for 25 days now and have barely left the hospital. When Julia pops in to visit it’s like seeing a friend.”

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Bliss Nurses help parents feel less anxious, more confiden

90% of parents said they felt empowered to look after their baby as result of support

of parents said they felt less anxious as a result of the support they received from a Bliss Nurse

80%

Babies in the UK clinical care, but need care and s It’s a difficult and for parents and someone to look their needs

Bliss Nurses provide emotional and practical support to parents, at the cotside, when and where they need it most

I felt more empowered to ask (to take the baby out). Before I would have just waited for staff to offer… [the Bliss Nurse] made me realise I had the right to ask and to care, it was my baby

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Lots of parents are angry and scared because they don’t have information…you need someone separate from the clinical team to empathise and give information

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Nurses

ore confident and more able to be part of their baby’s care

90% of parents said they felt more confident in caring for their baby as result of support from a Bliss Nurse

es in the UK get fantastic al care, but parents care and support too. difficult and scary time arents and they need one to look after needs

Helped me to recover from the trauma… she offered me emotional support …even just the couple of hugs I really needed

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1,000+ families are helped by Bliss Nurses each year

Bliss Nurses give parents support to cope with the challenges of parenting a baby in hospital. This helps the wellbeing of the whole family, and improves outcomes for babies

I was feeling really low and felt like giving up, but they pushed me to be strong

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Bliss nurses

“I’m lucky to do what I love” Three Bliss Nurses talk about their experience in neonatal care and how their roles help families feel safer and more informed.

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Cheryl Curson, Bliss Nurse for Birmingham, has been a NICU nurse for most of her career Why do we need more Bliss Nurses?

Neonatal units are looking after more babies than ever, which means nurses don’t have as much time as they would like to support parents because they need to prioritise the baby’s medical care. Parents need somebody who is there just for them.

Do any families you’ve helped stand out in your mind?

I remember one terrified mum with three older children, who would perch on the edge of her chair a long way from her baby’s incubator. She didn’t think her baby would survive. We talked and eventually she put her hands inside the incubator, guided by mine, to touch her baby for the first time. Many We need parents are worried to work in about hurting their baby, partnership or dislodging lines, so I help them build with parents their confidence.

What needs to change on neonatal units?

We need to work in partnership with parents, not only by giving them information and recognising their role in their baby’s care, but also by making sure the service we provide is truly family-centred.

What’s the first piece of advice you give parents?

Ask as many questions as you like, and remember it’s your baby.

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Bliss nurses Sue Thompson has been a Bliss Nurse for the Middlesbrough area since September 2013

As Bliss Nurse for Norfolk and Norwich, Julia Shirtliffe helps around 50 families every week

What do you enjoy most about your role?

Having the time to sit and listen to families without watching the clock, answering alarms or being called away.

Has anything surprised you?

Yes - that families have concerns beyond their baby. As a neonatal nurse I never asked about money or wider family circumstances because I felt it was intrusive. Now, when I bring up finances I often see a wave of relief cross parents’ faces. I always preface the topic with ‘Don’t think I’m nosy but…’ and so far nobody has told me it’s none of Nobody has my business. Some ever told me families struggle to get in it’s none of to the unit to see their baby because of lack of money my business or transport. I can put them n touch with charities who offer free lifts and so on.

What are the challenges?

Explaining my role to staff because it’s different for every single family: I can be a shoulder to cry on, somebody to moan to, a directory of information or a map of further contacts.

Which piece of advice do you give most often?

Nobody else can be your baby’s parents. Your touch is different because it’s a loving one, and your baby knows your voice. What you can do for your baby is immense, so don’t be scared – put your hands in the incubator and touch your baby.

Why are Bliss Nurses important?

If we want to offer a gold-standard service then Bliss Nurses are essential. We have the time to listen and deal with little things that make a big difference.

Describe a typical day It can range from checking parents have the Bliss booklets and sorting out accommodation to telling mums on the postnatal ward how their baby is doing and running ‘nurture’ groups for parents whose babies have left the hospital.

Give an example of how you’ve made a difference When I started siblings were only allowed on the unit for 90 minutes because some had been messing around. But they were just bored. So I successfully applied for a grant and now there are loads of toys for brothers and sisters to play with. It’s so important to involve them.

What would you say to someone reading this article whose baby has just been admitted to NICU? Recognise that this is an awful time, you’re in shock and running on adrenalin. It’s not the journey you expected and you have the right to be upset. That, and never feel guilty about going home.

We want all families across the country to have the opportunity to receive help from a Bliss Nurse if they need it.

But we can only do this with your generous support.

Visit bliss.org.uk to donate today.

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Grant funds

Bliss Baby Charter Grant Fund

Bliss is working with the True Colours Trust, a charity supporting disabled and terminally-ill children, to provide over £250,000 in grants.

The Bliss Baby Charter Grant Fund is awarded to neonatal units across the country, who have successfully completed

Before

After

Birmingham City Hospital (BCH) Due to the lack of a community team, parents tend to stay in rooming-in rooms for longer than on other units. The rooms were “not conducive to creating a warm and calming environment”, meaning some families avoided spending time there. Families felt the rooms created a feeling of isolation.

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s nd

eted

Grant funds the Bliss Baby Charter Audit Tool. The grant supports units in improving their parent and family facilities.

Hospital units can apply for a small grant (up to £1,000) or a large grant (up to £10,000). We’ve awarded grants to over 30 neonatal units, enabling them to refurbish

or create facilities for parents and families that are more welcoming and up-to-date.

Here we look at the impact the grant is having on two of those units.

For any queries, please contact: Laura Knaier - laurak@bliss.org.uk

Before

After

Worcester Royal Hospital (WRH) Parents and staff alike felt that the nurseries and the breastfeeding room were too clinical. Staff said “it almost felt like (being) underground”. With the help of the grant fund the unit was able to “bring the outside in”, while also purchasing extra breast pumps so that all mums can express whenever they want, rather than having to queue. Parents are more relaxed in the new environment and staff now feel less stressed, because they can provide better care and facilities.

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World Prematurity Day 1 We provide support, advice and information to families

64k

The number of premature births in the UK each year, the highest in Europe

1 in 13

15m

The number of babies born prematurely each year in the UK

The number of babies born prematurely worldwide every year

7.5m Bliss is involved in ÂŁ7.5 million of research

Infographic_draft3.indd 22

We work with docto to improve care

Support World Prem on 17 Novem

Visit blis

330k The number of visits Bliss’ online message board received in the last year

to see how involved o help us cha of premature babies and t 19/09/2014 11:21

Day 17 November 2014

with doctors and nurses prove care for babies

We are the voice of babies making sure their needs are heard

500k+

orld Prematurity Day 17 November

Visit bliss.org.uk

ee how you can get volved or donate to p us change the lives emature and sick ies and their families Infographic_draft3.indd 23

1.8k 315k 25k+ Families received better support in hospital thanks to Bliss

Bliss has supported over a million families Thehalf number of years Bliss has been su premature babies and their famil

The number of phone calls Bliss’ Helpline receives every year

The number of information and advice booklets that Bliss gives to parents every year

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The number of years Bliss has been supporting premature babies and their families

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Lasting support Parents with a baby in special care will benefit from the support of neonatal staff and concerned family and friends, but this can quickly disappear once they return home with their baby. That’s why Bliss provides a range of vital support services to families to help them through the days, weeks and months after their baby has left neonatal care. Gemma Pritchard reports.

Ruth O’Neill and her husband Paul were excited to finally bring their son, Reuben, home after seven weeks in hospital.

He’d arrived at 31 weeks and was immediately admitted to NICU, but had made good progress since and no longer needed the medical care of the doctors and nurses.

For the first few weeks, they received a great deal of support from family and friends who rallied around to deliver cooked meals and bring them anything they needed. They also had the support of an outreach nurse who would visit to check on Reuben’s progress.

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feel they have nowhere to However, as life seemingly returned to normal, this support turn to for support. As well as coming to terms with their faded and the excitement they had felt when bringing Reuben recent experiences in hospital, they may also struggle to return home soon turned to anxiety. to a routine, leaving behind “I suddenly felt quite alone in the support of the the experience. doctors and nurses.

There was no one There was no That’s why around us who one around us who Bliss provides a truly understood range of support the experience we truly understood had and the fears the experience we services, such as we still held,” says had and the fears Family Groups, a counselling service Ruth. we still held and an online Like Ruth, many message board, parents who to help families long after they have had a premature or sick leave the unit. baby experience feelings of loneliness and isolation and

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Karen Williams, Bliss’ Regional had found a group of people I Coordinator for Leeds, explains: didn’t have to keep explaining “For some people, it feels like everything to. Unlike some everything hits when you get of the well-meaning mums I home. Without the support met at playgroup and baby of the medical staff and the classes, they asked sensible companionship of other parents questions, understood the on the unit, they can experience medical terminology we had a real low. Family Groups become immersed in and provide a safe environment although no two experiences for parents to come along, talk of having a premature baby to other people are the same, we with similar shared plenty of It was such a experiences and common ground. relief that I had get information There was no and support.” judgement; it was found a group of Ruth had been people I didn’t have a safe environment given a bundle to discuss the to keep explaining unique sequence of leaflets while everything to Reuben was in of progress and hospital and had milestones for noticed the Bliss logo on several premature babies.” of them. After Reuben had It was also through the group returned home, she googled that Ruth found out about the the charity to see what services counselling service Bliss offers. they offered and discovered Ruth had six free sessions with that there were a couple of Bliss an accredited counsellor. She Family Groups in her local area. found this so beneficial that she With some trepidation she chose to continue seeing the went along to her first meeting counsellor for further sessions. a few weeks later.

Reuben is now 20 months “I was very emotional when and doing well. Ruth still I first started attending the regularly attends the Family group but I felt such relief that I Groups, hopping between

three local groups in Leeds.

While attending the groups, Ruth also found out more about volunteering for Bliss and hopes to become more involved in supporting Bliss once she returns to work part-time.

Ruth and her son Reuben

How to access support from Bliss To find out what support Bliss offers in your local area, go to our website and select:

bliss.org.uk/support-groups-and-champions/ Visit the Bliss message board for parents of premature or special care babies to ask questions and share their experiences and advice.

bliss.org.uk/our-community/messageboard/

Call the Bliss Helpline on 0500 618 140, Monday-Friday, 9am-9pm to access support services including Bliss’ free counselling service

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Prudential RideLondon

Be part of our amazing team in On Sunday 10 August, in the torrential rain and wind of a tropical-grade storm, more than 250 cyclists took to the roads for Prudential RideLondon-Surrey 100 to raise money for Bliss, when we were proud to be the official Charity of the Year.

The remnants of Hurricane Bertha that swept across the South West of England that weekend may have soaked every one of the heroic 21,000 participants and all of those brave and foolish souls who took to the streets to cheer them on, but it still wasn’t enough to dampen the spirits of Team Bliss.

Team Bliss were raising money for our programme of Bliss Nurses and they hope to raise over ÂŁ250,000. Find out more about this work in our special feature on page 12.

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Prudential RideLondon

m in Prudential RideLondon 2015 What a lovely experience it’s been. Thanks to the Bliss Team for the support pre-event, around the course and at Green Park.

The crowd were brilliant! The constant cheering and support for all the riders through the awful weather gave me an extra push. Kudos to them! Lutfi Shamsuddin

If you have been inspired by our riders and would like to join Team Bliss in Prudential RideLondon 2015 call 020 7378 5747

email events@bliss.org.uk

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Thank you Celebrating the amazing efforts of our wonderful supporters

Liz Hillier – Bliss campaigner

Inspired by her own experience after her daughter Bethan became critically ill, Liz has been campaigning passionately for Bliss.

Liz has supported our national campaigns, built a good relationship with her MP and, most impressively, persuaded her local neonatal unit to start the Bliss Baby Charter Audit. She also found the time to organise her own Buggy Push (attended by her MP) raising nearly £1,000 and is currently training to be a volunteer to help other parents. She has worked tirelessly, with passion and dedication, to make a real difference.

Liz says, “I’ve loved every minute of campaigning. It has been the only thing that has helped me come to terms with the traumatic events from four years ago. I’ve made good friends and feel inspired by the other campaigners”.

Thank you Liz!

Andy Cole OBE – Former Bliss Chief Executive

Andy was the Chief Executive of Bliss for almost eight years.

Under Andy’s leadership Bliss successfully campaigned for improvements in neonatal services across the UK, reductions in infant mortality and the rights of babies and their families.

Andy championed Bliss’ work for capturing parents’ experience of neonatal care to help shape services and supporting critical care decision-making, as well as developing programmes around the educational needs of children born early.

With Andy’s vision and passion to help families, Bliss’ support and information services for parents have greatly expanded at a local level. A national accreditation system for neonatal units has been launched and specialist Bliss Nurses have been funded in major intensive care centres.

Everyone at Bliss wishes Andy all the very best for the future.

Thank you Andy!

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Thank you

Thank you Clockwise from top left:

Making a difference award winners AbbVie AbbVie has supported Bliss for over ten years, donating over £250,000 to our work.

Phil Crisp Phil’s daughter Tamsin was born weighing just 2lbs 2oz. Since then Phil has given incredible amounts back to Bliss having raised an amazing £15,500.

Graeme Vousden Having had a premature baby and fighting to delay his own son’s school start, Graeme has campaigned tirelessly for greater flexibility to help other families.

Improving care award winner Dr Colin Morgan Dr Colin Morgan is a consultant neonatologist at Liverpool Women’s Hospital and led the Bliss funded research project SCAMP, looking at babies’ early head growth, which has a strong link to increased neuro-developmental outcomes.

Special dedication to families award winners Jade Caddick Jade volunteers as a Bliss Buddy at Heartlands Hospital in Birmingham and is integral in providing information and support to parents and families with a baby on the unit.

Sarah Connelly Sarah supports Bliss as both of her daughters Nadia and Rosa were born prematurely.

Despite her busy schedule, Sarah gives Bliss a huge amount of her time and energy supporting the charity and other families.

Outstanding contribution award winner Natalie Anderson In June last year Natalie took part in the TV show, Your Face Sounds Familiar, and went on to win the grand final of the series. In all, Natalie raised an incredible £85,000 for Bliss.

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Bliss Christmas appeal 2014 Clare Underwood’s daughter, Lily, was born six weeks early.

Clare is now appealing for support for this year’s Bliss Christmas appeal.

You probably have your own special reason for supporting Bliss. Lily is mine. Because when she was born six weeks early, I honestly thought she was going to die.

Lily fighting for

her life

Before they whisked her away to intensive care, I had the chance to give her one little kiss. As the doors to the operating theatre closed between us, I remember thinking, is that the only kiss I’ll ever be able to give you?

In the traumatic weeks that followed, I used to gaze at her, so tiny, so vulnerable, her little lungs working so hard for every breath. I’d think to myself, my precious little girl, how on earth will you possibly make it?

Yet Lily did make it – and I know that the life-saving care she received owes a lot to the fantastic work done by Bliss.

Please will you make a gift of £10 to support Bliss this Christmas? The more money they can raise, the more babies will survive and go on to thrive.

To donate, complete and return the form to Bliss or alternatively TEXT TINY00 and £10, £5 or £3 to 70070.

Lily with m

um, Clare

Please visit our Bliss Facebook page or follow us on Twitter (@blisscharity) and help us spread the word to make even more of a difference this Christmas for more babies and their families.

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Yes, I would like to help more babies survive.

Your gift this Christmas will mean more babies go on to survive and thrive.

Call to donate: 020 7378 5740 Title

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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:

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Please send us your completed donation form to: FREEPOST RTHY - CEZE - JBUX, Bliss, 18-20 Crucifix Lane, LONDON SE1 3JW We would like to keep you up to date with out work.

Please tick this box if you do not wish us to contact you by telephone Please tick this box if you do not wish us to contact you by post We will not pass your details on to any other organisation for their marketing purposes

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

Your gift can be worth 25% more to Bliss at no extra cost to you. To qualify for Gift Aid you must pay an amount of Income Tax and/or Capital Gains Tax each year at least equal to the amount of tax that all charities and Community Amateur Sports Clubs you donate to will reclaim in that year (6 April one year to 5 April the next).

Council tax and VAT does not qualify.

I’m a UK tax payer. Please treat all donations I have made to Bliss for the past 4 years and any I make in the future as Gift Aid donations until further notice.

Bliss, 2nd Floor, Chapter House, 18-20 Crucifix Lane, London SE1 3JW t 020 7378 1122 f 020 7403 0673 e ask@bliss.org.uk bliss.org.uk. Helpline 0500 618140 Registered charity no. 1002973 Scottish registered charity SC040878

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Bliss is here to help you Helpline

Call Bliss for advice and support.

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

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

s t s tart The be sing to expres y A guide bab mature your pre

and bre

ast fee

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

ding

Free advice booklets

Our comprehensive booklets contain advice on a range of issues. To order call the helpline or visit our website.

bliss.org.uk Visit us online. We have a messageboard, parents’ stories, advice and information, downloads and much more.

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