Little bliss issue 30 (Summer 2013)

Littlebliss

Issue 30 Summer 2013

The only magazine for families of special care babies www.bliss.org.uk/littlebliss

Agony & ecstasy Coping with the differering fortunes of twins in special care

Too much, too young?

The thousands of premature babies who are arriving at the school gate too soon

AND MORE: LONDON MARATHON l BUGGY PUSH l DADS TALK l REAL LIFE STORIES l LOOK AT THEM NOW l EXPERT ADVICE l VOLUNTEERS & REGIONAL DEVELOPMENT l NEWS FROM BLISS l KIDS STUFF l

HELP & EXPERT ADVICE FROM SPECIALIST BRA FITTING TO E N S U R E YO U R B R A G I V E S A L L T H E S U P P O R T Y O U N E E D, T O F I T T I N G YO U R C A R S E AT

2 Y E A R G UA R A N T E E W E ’ R E A L L A B O U T P E AC E O F M I N D. M OT H E R C A R E 2 Y E A R G UA R A N T E E ON ALL PUSHCHAIRS, STROLLERS A N D C A R S E AT S

P R I C E M AT C H W E W O N ’ T B E B E AT E N O N P R I C E I F YO U F I N D T H E S A M E P R O D U C T AT A CHEAPER PRICE ELSEWHERE, W E ’ L L M AT C H I T

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A lasting affect

In this issue...

Regulars

Registered charity no. 1002973 Scottish registered charity SC040878 Cover image courtesy of Chris Symonds of daughter Millie, born at 32 weeks.

O

ur two cover stories in this summer issue of Little bliss share a common theme. While the journeys featured in these articles all start out on the neonatal unit, the effects of the time spent in hospital are felt for years after.

Whether it’s coping with the conflicting emotions of grieving for one twin whilst also loving and caring for a surviving twin or considering the impact of deferring or delaying your premature baby’s school entry because their early arrival meant they were now in a higher academic year, these stories show that the hardships associated with having a baby in special care don’t end when that baby leaves the hospital.

That’s why Bliss is here to support babies and families long after they leave the neonatal unit. Our helpline and family groups provide ongoing support to parents and relatives, and our resources, such as our Deferring or delaying school entry pack, provide families with the practical tools and information needed to make informed decisions about their children’s futures.

In fact, you can see throughout the magazine how our relationship with our supporters continues long after the neonatal unit: whether it’s raising money for Bliss by running the London Marathon or organising a Buggy Push, becoming a volunteer for Bliss, or by sharing their story with other parents of special care babies in Little bliss magazine.

It is these relationships, and this support, that will allow us to be there for thousands of families over the next few years.

Mark Gorman, Editor Editor: Mark Gorman Design: Jess Milton Little bliss 9 Holyrood Street London SE1 2EL t 020 7378 1122 e little@bliss.org.uk www.bliss.org.uk

4 News from Bliss

Virgin London Marathon and Bliss Buggy Push

21 Ask an expert Comfort and soothing

30 Volunteers Celebrating our amazing volunteers

32 Kids stuff Colouring competition, ice lollies and maze

Features 10 The agony and the ecstasy Coping with the differing fortunes of twins in special care

22 Too much, too young?

The thousands of premature babies arriving prematurely at the school gates too

28 Going regional Bliss’ regional development and volunteer-led work over the last two years

Real life 18 A fighting spirit Babies born at term can also need life-saving special care

26 Look at them now Oliver Procter - born at 28 weeks weighing 1lb 13oz

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

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.

Little bliss l Summer 2013 3

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In this issue News

Runners take on the Virgin London Marathon for Bliss Nurses On April 21, 90 runners took on the 26.2 mile challenge that is the Virgin London Marathon to raise money for the Bliss Nurse Programme.

Bliss Nurses provide direct support to families going through the challenging and difficult experience of having a baby in special care. They work with the doctors and nurses on their unit to ensure that high-quality care is provided to all families. Supporting families directly in hospital has many benefits for premature and sick babies; they may spend less

time in hospital and have less chance of returning, as well as a better chance of establishing breastfeeding. Caring for the whole family in this way can also reduce stress and improve confidence in parents. It also enhances early

“Despite the warm weather, the whole team did themselves and Bliss very proud” bonding opportunities between a tiny or sick baby and their family – this ultimately means better longterm outcomes for everyone.

In June 2011, the first Bliss Nurse was appointed in London and in March 2012 the second Bliss Nurse took up her post in East Anglia. Our aim is to recruit 28 nurses by the end of 2020.

There was barely a cloud in the sky as the Bliss Nurse Team met at Greenwich Park for a pre-race photograph. The conditions were not ideal for a group who were more used to running in the snow than sun, having trained through a particularly cold winter and spring season.

Despite the warm weather, the whole team did themselves and

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

We sti ll ne ed de dicate d, ins pir ati on al pe op le to run the Vir gin Lon do n Ma rat ho n for Bli ss in 2014 - for mo re inf orm ati on on h

4 Little bliss l Summer 2013

nd on ra n th e Vr gi n Lo e proces s Ni ne ty pe op le £200,0 00 in th er ov ng isi ra iss Bl r fo n ho M ar at

Bliss very proud. A number of personal bests were recorded, some of the team completed

“The buzz of raising money for such a great cause definitely helped when training through the bleak winter” the race wearing some great fancy dress costumes and, even with blisters on their feet and the runners close to exhaustion, everyone was quick to say after the race just what an amazing experience it had all been.

Bliss runner Paul Gambrill said: “I decided to run the London Marathon as some close friends were supported fantastically by Bliss after their little boy was born prematurely and sadly died at ten months. The buzz of raising money for such a great cause definitely helped when training through the

bleak winter, when long runs in the snow were the norm. The last ten miles of the marathon were both amazing and exhausting, but the elation crossing the line was unbelievable. By 10pm that night I’d already decided I wanted to do it again and try and raise even more for Bliss in 2014!”

This year also saw Alex Morales take on the Guinness World Record for fastest person dressed as a baby to complete the marathon.

Unfortunately, Alex finished just five minutes outside of the record time.

He said: “Running a marathon in a nappy isn’t the most dignified thing

“The marathon team are aiming to raise £200,000, which is enough to fund two new Bliss Nurses” to do, so I’m annoyed I missed the record because it means I’ll have to

In this issue

give it another go!“ Incredibly, Alex also ran in the Boston Marathon the week before, and he added: “The bombings in Boston were a horrible end to a wonderful event. But they only made me more determined to run London six days later.”

The Marathon team are aiming to raise a total of £200,000 which is enough to fund two new Bliss Nurses. They will find out in the summer if they have reached their target.

On behalf of everyone at Bliss, Little bliss would like to say a huge well done to all our Marathon runners and anyone else who has taken part in an event for Bliss so far this year!

To run the London Marathon for Bliss in 2014 call 020 7378 5747 or email events@bliss.org.uk

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In this issue News

Get your Buggy Push on!

Do you want to do something amazing this year?

Do you want to do something that keeps you active, can include the whole family and raises money to support special care babies and their families?

Then why not organise or join a Bliss Buggy Push in your local area? We will support you every step of the way, helping you to find a good location for your push and promote your event to Bliss supporters and other mums in your area.

The London Buggy Push, Bliss’ flagship event sponsored by Britax and BOB, took place on a

warm, sunny day in May. Over 100 families gathered in London’s Regent’s Park to push their buggies around the beautiful 5k route. The event was attended by Cbeebies star Katy Ashworth from I Can Cook and children’s favourites Ben and Holly, who took part in the pre-push warm up, posed for photographs and read a story book after the race had finished.

The event sponsors, Britax and BOB, very generously donated a brand new Britax Affinity Buggy as a prize to the highest fundraiser, which was won by Michaela Southworth.

We need lots more pushes to take place across the country over

the next six months, so why not get in touch and request your Buggy Push organisers’ pack today? The pack tells you everything you need to know about organising a push.

It doesn’t have to be a big event and can take place at any time of the year. Plus we also have the fantastic ‘Bling Your Buggy’ and highest fundraiser’s competitions where you could win a prize bundle worth over £150!

To order your pack or for more information, visit www.bliss.org.uk/buggypush or contact the events team by emailing events@bliss.org.uk or phoning 020 7378 1122.

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6 Little bliss l Summer 2013

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The financial impact of having a baby in special care: please share your experiences We all know that having a new baby can be an expensive time for any family, however many parents of premature and sick babies face crippling additional costs associated with their baby being admitted to hospital, often for long periods of time.

Bliss research from 2010 showed that families of premature and sick babies faced additional costs averaging £2,800 - or an extra £310 a week -associated with having a baby in neonatal care.

These costs covered a wide range of things such as loss of earnings,

transport costs to visit their baby in hospital, and the cost of childcare for other children at home.

“If your baby was admitted to hospital after birth please complete our survey to let us know about the additional costs you and your family incurred” Throughout this summer Bliss’ Campaigns and Policy Team will be looking afresh at the costs families face when they have a baby born too soon, too small or too sick. If your baby was

admitted to hospital after birth please complete our survey to let us know about the additional costs you and your family incurred during this difficult time. Just go to www.surveymonkey.com/s/ parentcostsurvey The purpose of the survey is to gather further detailed information to guide our campaigning work and help us to make a strong case for greater help for families with these experiences. All information provided will be handled sensitively and responses will remain anonymous.

For further information, please email campaign@bliss.org.uk

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Little bliss l Winter 2012 7

Bliss here to help you In thisis issue 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

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.

www.bliss.org.uk

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

Ben and Holly’s Little Kingdom are raising money for Bliss This year Ben and Holly will be helping to raise vital funds for special care babies and their families.

“Somewhere, hidden amongst the thorny brambles is a little kingdom where everyone is very very small...”

For most parents Ben and Holly will need no introductions - from the makers of Peppa Pig comes this BAFTA award-winning television animation. Holly is a young Fairy Princess, who is still learning how to fly and her magic doesn’t always go quite according to plan. Her best friend, Ben the Elf, doesn’t have wings and he doesn’t do magic, but he runs very fast and flies on the back of Gaston the Ladybird. They live in the Little Kingdom, a tiny land where flowers and grass rise high above them and every day is an adventure.

This year they will be supporting Bliss.

Magical FUNdraising…

On Saturday 25 May, Ben and Holly ventured away from their tiny land of elves, fairies, small animals and insects to spend the day at the Bliss Buggy Push in Regent’s Park. Everyone who took part in the event was welcomed over the finish line to have a hug and picture taken with their favourite TV characters.

Squeals of delight could be heard all over the park as excited children urged their parents to finish the push and meet their favourite TV characters! A well deserved rest followed the 5km push as Ben and Holly added a little magic to the day by reading one of their favourite books.

The BAFTA award winning animation characters will continue to support Bliss’ activities over the coming months, providing prizes for fundraising activities, activity sheets and patterns for the Bliss Craft Club (after all – Elves are very good at making things), and getting behind our plans for World Prematurity Day on November 17.

Feature

Agony and ecstasy When Sarah Miles gave birth to identical twins at 28 weeks she was pulled in two directions, both physically and emotionally. When one of her daughters tragically died after an operation at the age of six months Sarah continued to experience extreme highs and lows. Here she tells her story to Little bliss.

T

hinking back, it began with the words: “We have to move Eva to Chelsea and Westminster (Hospital) so they can operate on her oesophagus.”

Despite the post-c-section drugs, I will never forget the kind faces of the two neonatologists who broke the news that Eva had been born with TracheoOesophageal Fistula and

10 Little bliss l Summer 2013

Oesophageal Atresia (TOF/OA).

I’d never heard of TOF before, but it made sense of the high levels of amniotic fluid (TOF babies can’t swallow because their food pipe hasn’t formed properly) that had caused my waters to break. Not that I joined up all the dots at that moment.

I think I nodded. My tiny girl needed an operation to save her life? Yes, please.

So while Eva was blue-lighted to another hospital, I recovered at Queen Charlotte’s in West London with her twin sister Charlotte upstairs in NICU. And so began my need to be in two places at the same time.

For four days I tried to focus on expressing and getting myself well enough to be discharged.

Yet while I was able to have some wonderful first cuddles with

Charlotte, my contact with Eva was restricted to frantic phone calls and text updates from my partner, Dave.

The minute I could leave, we drove to Chelsea and Westminster NICU and I got to see my precious Eva again. She wasn’t stable after her operation so all I could do was whisper through the portholes and watch in wonder as her tiny hand gripped the end of my finger. I felt useless. The doctors explained that we would have to wait until she was bigger and stronger before they could operate again to join up the two ends of her oesophagus.

The following morning we were told that Charlotte would be transferred to Chelsea and Westminster. I was so grateful.

It certainly made things a lot easier over the following weeks but Eva and Charlotte were never in the same room, so I was still torn between them.

Every morning I’d hover in the corridor between where Eva and Charlotte were separately incubated, waiting to be called in for ward rounds, hoping they wouldn’t coincide. I still wasn’t able to hold Eva, so there was little I could do apart from anxiously sit beside her incubator, reading her notes. In contrast, Charlotte was doing relatively well so there were cares to be done, nappies to be changed and kangaroo cuddles to be cherished. But Eva was my sicker baby, shouldn’t I be with her more? I was expressing six times a day, trying to eat and

sleep enough to keep going, and needing to be beside two incubators in two different rooms at the same time. It was impossible.

So I did what I do when I’m overloaded at work: I scheduled.

The amazing nurses would help me plan my day so that I could do at least one set of cares for Charlotte and Eva, be there for at least one feed, have a cuddle with each and be present at doctors’ rounds. I started expressing beside their cots, and as both my girls grew, we had some good, if busy, days. We managed to get them together

“While I was able to have some wonderful first cuddles with Charlotte, my contact with Eva was restricted to frantic phone calls and text updates from my partner” on three occasions for a ‘double cuddle’, which was just bliss. It was only during those moments that my mind became still – there was nowhere else I needed to be; both my girls were with me.

On Day 79, it was time for Charlotte to come home, but – as often seemed to happen – while one of my girls was doing well, the other was having a tough time. During the second attempt to repair Eva’s oesophagus it had become clear that the gap was too big so the operation was abandoned. She had a very difficult time post-

Despite being born together at 28 weeks, Charlotte and Eva progressed at different rates and spent little time together in neonatal care

surgery, requiring a terrifying resuscitation, two chest drains and a longer-than-anticipated period on the ventilator. My heart was simultaneously full of joy at bringing Charlotte home and full of fear and guilt for leaving Eva behind.

Because of the hospital’s infection control policy, I wasn’t allowed to bring Charlotte back onto the unit, so now I needed to be in two different postcodes.

We’d been told that, once again, it was a matter of waiting for Eva to be bigger before they could operate, this time to pull her stomach up into her chest. So I timetabled: nights and mornings with Charlotte, afternoons and evenings with Eva. It seemed the only fair thing to do.

Although exhausting, the three months that followed were our happiest times in NICU. Eva began to thrive, was moved to the high dependency unit

Little bliss l Summer 2013 11

T

F Eva (left) was making good progress but suffered complications following surgery and tragically died after over six months in neonatal care. Today, Charlotte (right) is making excellent progress and meeting all her milestones

(HDU) and came off CPAP to breathe by herself. Her weight was climbing steadily towards the 5kg required to operate, her head control improved and she started to smile. The focus shifted to development – I was determined she wouldn’t get left behind Charlotte – so we devised a play programme with one of her ‘aunties’ (as the nurses had

by her cot waiting for her to wake up. It was 14 days later, when Eva had failed to come round, that they sent her for an MRI scan then told us the devastating news that she had suffered global brain damage and would never recover. Words cannot express how we felt. We brought her home so our girls could be together again, and she stopped

“Dark days followed; I was still pulled in two directions, but this time it was between living and grieving, between keeping going and giving up” by now become known) and a daily schedule with another. I purposefully did the same things with both Eva and Charlotte: rocking them in their bouncers, reading them stories and singing the same songs while they wriggled on their playmats. They had several matching toys and the same musical nightlight soother – all to make things easier when they were reunited at home.

When the day of Eva’s operation came round, I was terrified. Once again she had a difficult time afterwards, so I spent some long days and nights

12 Little bliss l Summer 2013

breathing in our arms early one Thursday morning as the sun was rising. We’d been in NICU for 197 days. Eva died on Day 201.

‘Defeated’ is one word that I managed to find to describe my feelings. We’d fought long and hard – all four of us – and this was how it ended? That’s not fair.

Dark days followed; I was still pulled in two directions, but this time it was between living and grieving, between keeping going and giving up. I couldn’t afford to break down, Charlotte needed me. And in that way she was (and is) my salvation, my anti-depressant and my future

rolled into one giggly little bundle.

I was determined that Charlotte wouldn’t miss out on the fun stuff so we started going to baby classes. There were surreal moments when I’d be sitting in a library, singing ‘Twinkle, Twinkle, Little Star’ (which we played at Eva’s funeral) with a smile plastered on my face, but I did it for my girls. For Charlotte in the here and now and for Eva, who I know would want her sister to be happy.

Charlotte’s now a walking, talking almost-two-year-old and is doing brilliantly, smashing her developmental targets and showing no ill-effects of her extreme prematurity. I’m so proud of her, although it is painful to watch her meet the milestones that Eva never will. As a twin mum, I’m still torn in two between the feelings of ecstasy and agony. And I don’t think that will ever change.

Bliss is here to help.

To speak with someone who understands call our helpline on 0500 618 140 or visit the website www.bliss.org.uk

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My neonatal journey

Dads talk

#2 – A strange routine Jason Robson, whose son was born at 24 weeks, continues a series of articles sharing his experiences of having a child who was born prematurely.

I look back at the events of summer 2009 with a strange sense of detachment, almost as if it happened to someone else. We are still dealing now with the consequences of our son’s premature birth, but back then it seemed impossible to imagine what the future would hold for Toby.

Everyone told us to take it ‘one-day-at-time’.

Actually, it was very good advice. It was just impossible to process anything but the most current ‘here-and-now’ problems. Focus on what’s important now, deal with it and move on.

Family support was crucial. As the days turned into weeks, Toby was still far from home at the Medway Maritime hospital in Chatham. We had to split our time between days at the hospital, and days with our two-year old daughter. The company I work for was great, and through a mixture of re-arranging my working hours and using up holiday entitlement, I was able to work a threeday week. In a bizarre kind of way, a strange new ‘routine’ started to emerge.

Toby had a variety of medical issues to deal with, hydrocephalus (water-on-the-brain), chronic lung disease and Retinopathy of Prematurity (ROP – a common disease of the eye which affects many premature babies). Toby had a couple of operations at Great Ormond Street to fit (and then to adjust) a ‘shunt’ in his head to allow the excess fluids to drain away.

It’s very true that a problem shared is a problem halved. One thing we did that really helped us was to create a public Facebook page for Toby, on which we could post updates and pictures, and which friends and family could write on. It was a definite comfort to know that everyone was on his side and wishing him the best.

Our goal was always to get Toby home, but a more realistic goal in those first couple of months was to get Toby to a hospital nearer to where we live. (The three hour round trip to Chatham was a real pain and just ate into our day.) After two months under the care of the wonderful staff at the Oliver Fisher Neonatal Intensive Care Unit, Toby was ready to be moved to Pembury Hospital (a unit much closer to us).

We felt this was a real milestone in Toby’s condition, and meant the day was closer to him finally coming home. Each unit is different, and often have their own ways of doing things, so it took a little while to get used to Toby’s new home and to get to know all the staff who were caring for him.

Being able to visit Toby every day made an incredible difference to us, and for the first time in months we allowed ourselves to feel more positive.

Hopefully Toby would be coming home soon!

Jason writes a blog on issues affecting premature babies and their families at www.jasonrobson.com

Little bliss l Summer 2013 15

In this feature issue Special

Chrissie Israel Earlier this year Chrissie Israel, a hugely-respected neonatal matron at Southmead Hospital in Bristol and supporter of Bliss, sadly passed away. In this special feature, Little bliss pays tribute to her legacy

C

hrissie was a tireless supporter of Bliss for 20 years and had been heavily involved in much of our work, helping to pioneer family involvement in the care of premature and sick babies.

She will be greatly missed by her family, her colleagues, the numerous families and babies she worked with over the course of her career and everyone at Bliss.

In celebration of Chrissie’s life and the impact she had on neonatal care, both locally and nationally, Little bliss looks at just a few of the ways in which she worked with us.

18 Little bliss l Summer 16 Winter 2009 2013

Her focus on family-centred care Chrissie spoke at many of Bliss’ study days - which are a chance for neonatal nurses and doctors to get together and share their experiences and knowledge in order to improve the care they give to babies and their families - about the importance of familycentred care.

She believed that parents should be very involved in their baby’s care and always advocated that nurses should respect parents and the contributions they could make.

Studies since have shown that involving parents in the care of their babies can have a very

positive impact on the recovery and development of babies, and on the parents themselves.

Over a number of years, she helped to raise awareness of this ‘family-centred’ approach by speaking at a number of Bliss study days in front of hundreds of neonatal doctors and nurses from across the country. The effect that this had on the quality of care received by babies across the country is immeasurable.

She even coined the phrase ‘family-centred care’, a term that is now used throughout the medical field to describe the involvement of parents, siblings and other family members in a patient’s care.

Innovation To aid the family-centred care that families receive, Chrissie championed a number of innovative ideas that were practised on her unit.

Mums who were breastfeeding or having skin-to-skin time with their baby were given MP3 players so when ward rounds started mums could remain on the unit with their babies and the confidentiality of other babies on the unit was not compromised.

Southmead was one of the first units to produce a welcome pack for parents upon arrival into neonatal care. They also provided

“She even coined the phrase ‘family-centred care’, a term that is now used throughout the medical field” treasure boxes for parents to keep little keepsakes in from their baby’s time in hospital. Neonatal staff would also make comforters which parents could place with their baby and carry another around with them, then exchange them every day so that the parent could smell their baby and the baby could have the smell of the parent with them.

Many of these ideas were adopted on other units after Chrissie shared them with neonatal staff across the country

Nursing Advisory Panel For over ten years, Chrissie was a member of the Bliss Nursing Advisory Panel (NAP). The panel

performed a number of roles and was heavily involved in the formation of Bliss’ future planning; consequently, Chrissie was a highly influential figure with regards to the organisation’s family support, campaigning and improving care work over the last decade.

For Bliss Chrissie gave her time for Bliss in a variety of ways. Apart from being on the NAP, she also reviewed family support booklets for us regularly to ensure they were accurate and easy to understand. She created lots of patterns for premature baby clothes for the Bliss Craft Club, which people could knit and send to units. She arranged photoshoots at her unit in Southmead for Bliss – many of the images used in our booklets and on our website were taken in Bristol thanks to Chrissie’s help.

And she was a pivotal member of the Bliss Baby Charter steering group – helping to shape an area of work that will improve the level of care given on units across the country. In recognition of her work in this area, she was featured on the front cover of the Audit Tool booklet.

Recognition To recognise all of Chrissie’s work with Bliss, on her unit and the influence she had nationally, she was the recipient of a number of awards.

In 2004, on Bliss’ 25 anniversary, she was awarded a lifetime achievement award for her contributions to Bliss and in

Top-bottom: At the 2011 Big Heart Awards; helping a mum to tube-feed her baby; and on the cover of the Audit Tool booklet which she helped to produce

2011 Southmead was awarded Neonatal Unit of the Year at the Mother & Baby Big Heart Awards.

Little bliss l Summer 2013 17

In this Real lifeissue

A fighting spirit

Babies born at term can also need life-saving special care, as Nada Guarguaglini found out when her son’s oxygen supply was interupted during labour. Two years on from their neonatal experience, Gemma Pritchard spoke with Nada about Lorenzo’s progress.

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hen Nada went in to labour four days past her due date, having had a problem-free first pregnancy, she was expecting to soon be heading home from hospital with a healthy new baby. But a long and difficult birth meant that her son Lorenzo was born very poorly. During the delivery the oxygen supply to Lorenzo’s brain had been interrupted, which can lead to brain damage. “Lorenzo only started breathing after 19 minutes,” Nada recalls, “and then he was whisked away by

18 Little bliss l Summer Winter 2009 2013

the medical team so we didn’t see him for nearly five hours.

We were just waiting to see what would happen. There was nothing else we could do.”

Over the next three days, to Nada’s amazement, Lorenzo grew stronger and began to try to breathe on his own, eventually coming off his ventilator. “I was finally able to hold him, five days after he was born,” says Nada.

After 10 days he was moved from intensive care to a special care unit. An MRI scan at 17 days revealed that the treatment he had received at birth

was successful in that it had prevented serious damage to Lorenzo’s brain, but there was still some damage and Lorenzo still had a long way to go in his recovery.

“We were told he would have problems with mobility, but we didn’t know to what extent. The worst thing for me was being told that he might need to be tube fed as he grew up. I’m Italian and I grew up thinking that one of the greatest things in life is eating good food. I wanted to be able to teach my son to cook and for him to enjoy the food

we made. Thinking about that worst case outcome was the most upsetting thing. And all this was happening just 17 days in, when I hadn’t expected to still be in hospital. Having had no problems in pregnancy this was an unexpected rollercoaster of emotions.”

Lorenzo went home after four and a half weeks in hospital.

“We just wanted to be a normal family. But we were nervous about taking him home; we received so much support in hospital but now it was just us.”

Nada’s experience made her feel isolated from other people.

“I didn’t want to talk to other new mums I knew about my birth experience, they hadn’t been through what I had and it felt very isolating. I was also very aware that Lorenzo wasn’t developing at the same rate as other babies his age.”

“The first time he smiled, or held a toy were even more amazing milestones because of what he had been through” But Nada soon came to appreciate the small things that signified the fantastic progress Lorenzo was making. “The first time he smiled, or held a toy were even more amazing milestones because of what he had been through. We are so thankful, because we nearly lost him, we really appreciate every day with him now.”

As Lorenzo continued to

progress, Nada felt an urge to help other parents going through what she had. She now volunteers for Bliss as a support group coordinator, helping other families through their neonatal journey.

She says: “It was a very different experience for us in the unit compared to other parents we met; Lorenzo was the only term baby during our time there, so we felt a bit out of place. I remember thinking how helpful it would have been to have another parent in a similar situation to speak to. We had had lots of support from health professionals and education and therapy groups, but I thought ‘there’s nothing like speaking to other parents who have had the same or similar experience to you’. I wanted to offer something to other parents like me.“ The group Nada co-ordinates is nearly two years old now and is held weekly at a local church hall in Sutton. With usually only about six families attending each session, Nada says the group is friendly and intimate; parents meet for tea, cake and a chat, as well as organising fundraising events for Bliss and the local neonatal unit.

Families with both premature babies and term babies with disabilities or additional needs attend the group. “It is a big commitment for me and for the people who help out,” she says.

“But it is all worthwhile knowing how much people value the support of the group. The other parents love it – they feel safe and at home, they can make

Lorenzo was born at term but spent over four weeks in hospital friends and not feel different.”

Nada also supports Bliss by sharing her story with staff and volunteers at the charity, and assisting with study days. “It has been really enjoyable sharing my story, and helping other people has given me a lot of confidence.”

Lorenzo will be three years old this July. His progress is ongoing, surpassing many people’s expectations. Cognitively, he is at the same level as his peers and is a very bright little boy but his motor skills are a little delayed. Just before he turned two he started using a walking frame and is now starting to take steps on his own and has been able to feed well. Nada adds: “We waited nearly three years for his first steps. But he is very determined, he wants to be able to do everything himself – he has real fighting spirit.”

Little bliss l Summer 2013 19

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Special feature Ask an expert Sandie Skinner currently works as a Consultant Nurse in the neonatal unit in Winchester and as a Neonatal Lecturer at the University of Southampton.

She has worked in this specialty for 20 years.

“Dear Sandie, The nurses on my unit have told me that there are lots of things I can do to soothe and comfort my daughter, who was born nearly three months early. I’ve read that

Sandie says: Positive touch is very important for premature babies and the gestational age and condition of your baby will impact on how much handling she can tolerate. Parents are often very quickly intuitive about what their infant likes, as this can vary from infant to infant. When an extremely premature baby is first born it may be that just letting them grasp your finger is all that they can tolerate.

Understanding that too much stimulation can cause your baby stress and episodes of low or fast heart rate and dropping saturations is important. However, you will quickly learn and be able to modify your actions according to how your baby is at particular times.

Small babies are often comforted by one hand on the head and one on the lower back/ nappy area. This works well in the early days when your baby is nursed on her tummy. Also, talking to your baby can be soothing as can singing a lullaby. Of course, skin to skin is a lovely way to comfort and soothe your baby and also build the bond between you and your infant. Encouraging your baby into a flexed posture when her clinical condition allows is also good for her development. Remembering to speak to your baby before handling can also ensure they are gently awakened. Breast feeding is obviously another excellent way to

holding her and having skin-to-skin time with my daughter could be best ways to do this. Do you have any tips on soothing and comforting? What would you recommend?”

Alex, Leicester

soothe and comfort your baby. The nursing staff will also advise you and your partner on other ways to soothe your baby but as her parent I am sure you will quickly learn about her preferences.

From Bliss…

Bliss produces a wide range of information on comforting and soothing your baby.

In the ‘You, your family and your baby ’ section of the Bliss Family Handbook, there is information about bonding with your baby through Comfort holding, skin-to-skin (Kangaroo Care) and doing your baby’s daily cares.

The booklet, Look at me – I’m talking to you: Watching and understanding your premature baby, teaches you how to watch for your baby’s cues and body language so you can tell how they are feeling, if they are uncomfortable or in pain, and what kind of mood they are in. Becoming familiar with cues and body language will allow you better understand your baby and spot when they are hungry, uncomfortable or tired.

All of this information is elaborated on in a number of webpages on the Bliss website.

To order a copy of one of our booklets free of charge or for more information on any of these subjects , please visit our website, call the helpline number or send us an email.

Helpline: 0500 618140 (Mon-Fri, 9am-9pm) Email: hello@bliss.org.uk Website: www.bliss.org.uk

Little bliss l Summer 2013 21

Feature

Too much, too young?

Thousands of children who arrived in the world prematurely arrive at the school gate prematurely too, their first academic year decided by their arrival date, rather than the date they were due.

Now Bliss wants to see that change, and parents to be given more power to say when their son or daughter is ready for this important next step. By Jenny Hulme

T

here aren’t many parents in the UK who would look at their three year old son or daughter and think it might be a good idea if they started school a year early, before they were ready for it. Who would want their child to begin school life behind their peers, knowing their son or daughter would spend the next years of their life struggling to catch up? It seems nonsensical, then, that this is exactly 22 Little bliss l Summer 2013

what the system expects of thousands of children in the UK who are born prematurely.

If you are one of the 60,000 families whose baby arrived early this year, thoughts of him or her starting school are probably farthest from your mind. Like many, you may be living from hour to hour, day to day. As they grow into healthy toddlers, parents say they are so thankful for each step forward they don’t look for problems round the next

bend.

But each year Bliss are seeing children who are born in one academic year when they were due the next being pushed into school too early, sometimes despite their parents’ request for delayed entry. Many parents don’t realise there will be a problem until after their son or daughter has started.

What’s the problem?

There are actually only a very

small number of children born prematurely who experience any long term effect from their early start.

So you might think the issue of school starting not a big one. A larger number, though, experience very common development delay – the kind of thing that evens out in the end but which can make starting school ahead of time a real challenge.

This is especially tough on around 15,000 early babies who are born each summer

That’s a long story cut short, though. There was an absolutely enormous mountain that Lucas’ family had to climb first to make that delayed entry into school happen.

“We simply didn’t realise how significant and global the effects of his early birth could be on everything,” says his mother, Nicola. “While we’d been told when he was three that he had mild motor immaturities, Lucas was so personable and talkative as

“When you’re wondering if your son will live until tea time, you do not even think about what will happen next week, never mind when he goes to school.” which means four years later they’ll be expected to start school as soon as they are four because their birth date (rather than their due date) falls before the end of August.

Lucas O’Connor arrived 12 weeks early nearly ten years ago, weighing just 1lb 2.5 oz.

He started at a primary school in West London just after his fourth birthday. His parents had no idea what this would mean for their son.

Luckily for Lucas his reception class teacher was extremely experienced and quickly picked up that things were going to be a challenge and – ultimately – recommended he start his reception year again 12 months later.

a toddler he sort of masked other challenges. But it was clear as soon as he was in the classroom that he was going to struggle.”

The challenges for Lucas included having gross and fine motor skills below the level for his age, and he had difficulty concentrating and learning new skills.

“When you see this happening you beat yourself up and wonder why you didn’t see it coming,” says Nicola. “It was so clear once he’d started he needed more time.”

To get that extra time the O’Connors had to see rounds of specialists, jump through various hoops and fight for the support they now realised

Lucas, who was born 12 weeks early, was advised to defer his entry to school for a year by his teacher.

Lucas needed.

“We became aware that some of the things that were being said quite categorically about Lucas were simply wrong and had to be challenged,” says Nicola. “Even getting a SEN (special educational needs) assessment was a struggle. It was only when we planned to take the refusal to a tribunal that the LEA backed down.

Little bliss l Summer 2013 23

Graeme’s son was born 16 weeks early in 2008. Four years later, although he showed no signs of any long-term medical conditions, Graeme and his wife knew that their son was not ready to start school’

We could see individual specialists were submitting evidence without talking to each other. There was no big picture, and not enough focus on the little boy at the centre of this and what was best for him. We were lucky – we had an ally in his teacher and in the school. But there were times when it was so exhausting - when it felt like our sanity was being tested.

I think when you’ve had a prem baby you want life to be normal for them,” says Nicola.

“Looking back I remember my father saying he thought it might be too soon for Lucas to start school. But there was a part of me that didn’t want to hear that. We’d missed out on so many of the normal things when he arrived, and when he was a toddler. He was doing so well I didn’t want to tread a different path again.”

What’s the problem?

It was talking to parents like Nicola that convinced Graeme Vousden that he should work 24 Little bliss l Summer 2013

with Bliss on their campaign to give parents of premature babies the choice to delay entry. Graeme’s son was born nearly 16 weeks early in August 2008, weighing just 1lb and 8oz. and while, by the time they were filling in a school application last Spring, he showed no signs of any long term medical conditions, they were also aware that he was simply not ready for school. If he had been born on his due date, in November, Graeme’s son wouldn’t have been starting school until the following year (September 2013), but his early arrival meant that he was due to start school in 2012.

“We ended up asking questions like, ‘What impact would that have on his confidence? If, by going the year later there would be less chance of problems, why go early?” says Graeme.

Graeme managed to get an initial ‘no’ to his request for delayed entry overturned, but he could see that those in charge had little

understanding of the issue.

When he offered to help change that and started piecing together information and academic research and stories like Nicola’s, the case for delayed entry - particularly for those babies born in the summer months was compelling.

“It was clear that parents have a legal right to ask to delay entry, but it also became apparent that the departments dealing with admissions in most authorities were saying no. Then parents sometimes feel they had no choice.

“I heard about authorities telling parents they were worrying too much, or being over sensitive because of the early birth. That is such a patronising and ill-informed statement. There is a real need to educate the people making decisions about the life time effect of too early a start. How can they make the best decisions when they don’t understand the issue or haven’t read the academic

research?”

Graeme joined Bliss for a meeting at the Department of Education and when the official they met had the facts placed before him and read the case histories he couldn’t believe the decisions that were being made, says Graeme.

“I was asked why I waited so long to tackle this for my son,” says Graeme. “It is hard to explain to someone who hasn’t been through this what it’s like living breath to breath.

When you’re wondering if your son will live until tea time, you do not even think about what will happen next week, never mind when he goes to school. Of course your focus gets longer as they grow, but you are waiting to see. It was only the Spring

evidence about the benefits of delayed entry to the teachers who often have little knowledge about premature birth.

At the present time, parents are legally entitled to ask for delayed entry, but it has become clear to Bliss that the wording of the current schools admission policy is open to interpretation from those making decisions in individual authorities. Bliss is aiming in the first instance to see clearer guidance for admission authorities and parents setting out what parents’ options are with regard to delaying school entry. The charity has been working with the Department for Education to develop a set of frequently asked questions on this issue for admissions

“There is a real need to educate the people making decisions about the life time effect of too early a start” before the expected school start that we decided to delay – and realised we should have started the process two years earlier.”

Earlier this year Bliss was involved in a special conference in partnership with the Specialist Schools and Academies Trust (SSAT) which brought together educational professionals, psychologists, neurologists and families of premature babies for the first time. One of the key issues on the day was communicating the

authorities and parents to go on the Department’s website.

“Repeating the reception year was the best thing we ever did for Lucas,” says Nicola O’Connor. “The difference in his progress was amazing, and the difference it has made to him since is so clear.”

“We are hopeful we are going to see a positive change as a result of our campaign,” says Graeme.

“But in the meantime we’d encourage parents to get

Help and advice from Bliss A small number of children born premature encounter difficulties in joining school at their designated time, as it is not always suited to their needs at the time.

Bliss’ website contains help and advice for those parents who wish to explore the possibility of delaying or deferring their child’s school entry.

It explains in more detail what deferring or delaying school entry involves and has information and research on special education needs and long-term educational considerations.

It explains some of the options available to parents in this situation, outlining the advantages and disadvantages and offers advice on what to do if your request is turned down.

You may also find it helpful to look at our Deferring and delaying school pack which can be downloaded from our website.

www.bliss.org.uk advice from Bliss, to talk to schools a year or more in advance of when their child’s due to start, and to really think about what is best for his or her future – and then go and get it, and don’t stop until you have.”

Little bliss l Summer 2013 25

Look at them now...

Oliver Procter

Zoe Procter talks to Little bliss about her son’s amazing progress since being born over three months early and a neonatal stay that involved six separate transfers.

O

liver Procter, aged five from Essex, is a ‘typical boy’ according to mum Zoe, “who loves football, school and when he grows up he wants to be a spy!” says Zoe. But Oliver’s arrival into this world was anything but typical.

On 11 February 2008, Oliver was born at 26 weeks and four days, weighing 1lb 13oz.

Two days previously Zoe had suddenly gone into premature labour and had been transferred to Addenbrooke’s Hospital, Cambridge, from her local unit

26 Little bliss l Summer 2013

at Colchester, which couldn’t accommodate such an early baby.

To complicate things further, Oliver’s umbilical cord was wrapped around his neck during the labour and he had to be delivered by emergency C-section.

Zoe’s husband, Steve, met Oliver right away, but Zoe wasn’t well enough to see him until the next day. “It was all so surreal,” says Zoe, “I hadn’t heard much about premature babies before then, and it was happening to me. I went into auto-drive and felt like

a robot.”

The signs looked good at first, Oliver was moved from a ventilator onto CPAP after 24hours and he was feeding well through a tube. When Oliver was six days old, Zoe held him for the first time. “It was amazing.

The best experience ever. I had this rush of adrenalin and then wanted to cuddle him all the time,” says Zoe. The nurses showed Steve and Zoe how to do Oliver’s ‘cares’– like cleaning him and changing his nappy. “The nurses were fantastic and always made time to show

me things which made me feel more like a mummy to Oliver.”

After a month in special care at Addenbrooke’s, Oliver was well enough to return to their local unit at Colchester. Zoe and Steve were relieved to have him closer to home, but Oliver’s rollercoaster of a journey was not over yet. After a few days in Colchester, Oliver developed an infection and had to be transferred to the NICU in Stevenage Hospital.

“Thankfully, following his lifesaving operation Oliver recovered and went from strength-tostrength” Oliver was soon stabilised and recovered well. He was transferred to Chelmsford and then to Colchester to be closer to home. It was during this time, that things went from bad to worse.

On his second night in Colchester Zoe was woken up at 3am by a phone call from the hospital to say Oliver had fallen ill and had been re-ventilated. Zoe and Steve rushed to the hospital and were told that Oliver had contracted NEC (Necrotising Enterocolitis).

He was transferred back to Addenbrooke’s, to undergo life-saving surgery. Surgeons removed Oliver’s appendix, and part of his small and large intestine.

During this extremely stressful time, Zoe found it difficult to

express milk for Oliver. She made a friend on the unit at Addenbrooke’s, whose baby was born a week before Oliver. “She was a mum going through the same thing. We expressed milk together and supported each other, which got me through it.”

Zoe also read some of the Bliss leaflets and magazines on the unit. “I liked reading the success stories, it made me feel normal. I felt so helpless and reading other mums’ stories made me realise I wasn’t on my own and we could get through it.”

Thankfully, following his life-saving operation at Addenbrookes, Oliver recovered and went from strength to strength. After a total of six transfers in four months, Zoe and Steve were overjoyed to bring Oliver home a week after his due date on May 21.

The experience of bringing Oliver home was both exciting and daunting for Zoe and Steve.

“We’d been first aid trained by the nurses but we were still scared that we wouldn’t have the staff there as a back-up.” After a week at home, Oliver was re-admitted to hospital after suffering a severe allergic reaction to his formula milk. “This was the worst night we’d ever had,” Zoe says. “We’d gone from having home with us to back in hospital with nurses checking on him every hour.”

Oliver made a speedy recovery once again and Zoe and Steve could finally start enjoying their baby boy. “I felt ecstatic to pop to the shops with him and show him off,“ says Zoe. “It felt normal

Born at 26 weeks weighing just 1lb 13oz, Oliver is now a happy and healthy five year old

and I had a year off work and thoroughly made the most of every moment with him.”

Zoe, a nursery teacher, was able to take Oliver with her once she returned to work. “He gradually met all his milestones and has now caught up!” Oliver started school last September and is really enjoying making new friends and learning to read and write.

Zoe and Steve have since had another baby: Sophia – who was born full term and is now eleven months old. “Oliver dotes on his little sister and helps me choose her clothes. It’s strange to think back to what Oliver looked like when we first laid eyes on him,” says Zoe. “His skin was all seethrough and his body was the size of my hands, with these long legs.

Now he’s just thriving.”

Little bliss l Summer 2013 27

In this issue Feature

Going regional Two years of Bliss’ regional development and volunter-led work

I

n 2011, Bliss was awarded Department of Health funding to develop regional volunteer-led services to meet the needs of local families. The project began in early 2012 with the launch of ‘Bliss Volunteers’.

It aimed to deliver volunteer-led services to families throughout their neonatal journey in three ways:, from unit-based ‘Bliss Champions’ who promote the services and resources Bliss provides to families, to 1-2-1 ‘Bliss Buddies’ who provide support to families post-discharge and community-based Bliss Family Groups.

Eighteen months after the launch, Bliss now has four new regional offices established in Birmingham, North London,

18 Little 28 Littlebliss blissll Winter Summer 2009 2013

Manchester and Leeds and four co-ordinators who are working with families, health professionals and volunteers to make sure Bliss is delivering the services families want.

As the result of a year of consultation, promotion and recruitment we are now proud to announce that our ‘Bliss Volunteers’ network has grown dramatically across the whole UK. We have 82 Bliss Champions supporting units across the UK (four times as many as this time last year) as well as three Bliss Buddy programmes and 52 Family Groups. A recent audit produced positive results and praised Bliss’ volunteers for building credibility through their professionalism and commitment

and providing high-quality support to families.

We hope that Bliss Volunteers will continue to go from strength to strength. We have been inspired by the number of people who have come forward to give their time and we are really grateful to all our volunteers, partners and supporters who have helped us establish our programme and our new offices.

We have used Volunteers’ Week this year to pay tribute to our volunteers across the UK and take the opportunity to say thank you for all their hard work. Bliss would also like to extend its thanks to the hard-working unit and neonatal network teams who have supported us and helped us grow Bliss Volunteers.

Meet our Regional Volunteer Coordinators: Alia Hussain (Birmingham) Inspiration - A part of my role involved training and supporting volunteers. I was always interested in volunteer management as this was an aspect of the job I enjoyed the most.

Ambition - To extend Bliss’ reach as far and wide as I can; largely through the presence of Family Groups in and around my area and volunteers on as many units as is possible.

Proudest achievement - From having no volunteers on the units in my region to now having two or more in over half of them. Also from having no family groups in Birmingham to now having one active and three in the pipeline. The most important thing for me is that units now recognise me as their local link to the organisation and can access support

Karen Williams (Leeds) What inspired me to join the team – I wanted to work with an organisation that makes a difference and Bliss is a charity which is close to my personal experience. Having volunteered in a premature baby group since the birth of my daughter prematurely in December 2007, it felt like the perfect next step.

Ambition for my region – To build on existing relationships and forge new ones, particularly focussing on recruiting volunteers to support those babies and families in hard to reach places.

Proudest achievement so far – Managing to get a meeting set up with the network manager in only my second week.

Kylie Hodges: (Manchester) What inspired me to join the team – Having been a parent with a special care baby, I really believe in the power of peer support delivered by volunteers and am excited to be part of the team delivering Bliss volunteers into the north-west.

Ambition for my region – I want Bliss Champions in every unit, and a Bliss family group connected to every unit and area.

Proudest achievement so far – Visiting every hospital in my region and making solid contacts, many of whom are keen to be part of the project and will be strong supporters.

Corinne McCrum (North London) What inspired me to join the team – This role is really varied: It involves working with health professionals and volunteers to provide the local support in a variety of ways that families can really benefit from when they are going through such a tough time.

Ambition for my region – I want there to be a Champion in every unit, Bliss Family Groups in the community across the area so there is always one within reach and local Bliss Buddies so that if parents want someone to chat to in the early difficult days for reassurance, this is available.

Proudest achievement so far – I am really pleased that we have opened five new Bliss Family Groups in North London, two on neonatal units and three in the community, and that these groups are already making a big difference.

Little bliss l Summer 2013 29

Celebrating the amazing work of Bliss’ volunteering community

In this issue

60 seconds with...

This month: Mandy McKeon

Mandy’s son, Liam, was born at just 23 weeks with a host of problems. Liam is now doing well and Mandy has become a valuable campaigner and volunteer for Bliss, meeting the Secretary of State for Health and becoming a Bliss Champion and Buddy in her local area.

In what way do you volunteer for Bliss?

I am a campaigner and a Bliss Champion and Buddy.

How did you get involved with volunteering for Bliss?

I contacted Bliss after reading their website; they were asking for volunteers.

What do you enjoy about your role as a volunteer?

Knowing I am making a difference, however small, by speaking with parents and using my experience of a mum to a premature baby. I understand the emotional upheaval parents go through.

Has being a volunteer helped you develop any new or existing skills?

Yes, I have more confidence in meeting people and I have done some public speaking which I never thought I would do!!

Would you recommend volunteering to other parents of special care babies?

I would! As well as helping others I am also helping myself. It is like therapy to me to understand my own journey with my premature son.

“I’ve just started as a Bliss volunteer and have had overwhelming support from the staff at the unit. I love this!”

Bliss Champion 16 Little 30 Littlebliss blissll Autumn Summer2008 2013

Sue Russell – Hackney Bliss Family Group Volunteer

I

n December 2011, after a complicated and anxious pregnancy Sue Russell gave birth to her daughters Mali and Georgia at 28 +4 weeks.

Sadly, Mali was so sick that she only lived for three weeks.

Georgia spent ten weeks in hospital and is doing really well now. Sue benefited from the Bliss counselling service after Mali died so when she heard that Bliss was looking to start a family group in her area, she jumped at the chance to get involved.

Sue has helped to set up and coordinate the Hackney Bliss Family Group along with two other volunteers. The group is for families with 0-2 year olds who have spent time in a neonatal unit or special care - mainly at Homerton Hospital in East London. Families, who have been through similar experiences, can meet each other for mutual support, socialising and to hear from visiting professionals who talk about common interests such as weaning, child development or communication.

Sue enjoys meeting the parents and babies and hearing about their experiences. She has learned a lot already from other families as well as visiting speakers and would have found a local Bliss Family Group extremely beneficial after Georgia was discharged. In her own words Sue helped set up a local family Sue explains, “I’ve learned group in Hackney (top). Sue’s more about communication daughter Georgia spent ten weeks in hospital. and listening skills. I’m also starting to understand more about people’s concerns and at first, but Bliss provides great their different circumstances. I’d training, support and guidance for definitely recommend volunteering volunteering!” for Bliss in whatever way people can contribute! I was a bit nervous

Feature in the next issue If you’re a volunteer for Bliss and you’d like to feature in the next issue please contact Angie Greenaway-Samuel on angiegs@bliss.org.uk

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 l Summer 2013 31

Kids

Try these fun games whether visiting on the unit or at home.

Colouring in competition

Win two tickets to the cinema to see a film of your choice!

Simply colour in the picture above and send to: Bliss colouring competition, 9 Holyrood St, London SE1 2EL The most colourful entry will win the prize.

Competition closes on 1 September 2013.

FULL NAME_____________________________ AGE_______ ADDRESS_____________________ _______________________________________ ___________________ POSTCODE___________ EMAIL__________________________________

Jokes Why did the boy take his bicycle to bed with him?

Because he didn’t want to walk in his sleep.

32 Little bliss • Summer 2013

TELEPHONE______________________________

What do you get if you cross a bike and a flower?

Bicycle petals!

Why can’t a bicycle stand up on its own?

Because it’s too tired!

Strawberry Ice Pops Homemade ice pops are easy to do and great fun for the kids to help out with.

You can vary the flavour so easily by changing the fruit or yoghurt that you use.

Ingredients Makes: 6 ice lollies • 1 (135g) packet of strawberry jelly

• 250ml boiling water • 100g strawberries, pureed

• 150g vanilla or

strawberry yogurt.

Preparation Prep: 10 mins Extra time: 4 hours, freezing 1. Dissolve the jelly and set aside to cool down.

2. Add the fruit and yogurt and mix well.

3. Pour into ice pop moulds, or an ice cube tray, and freeze for four or five hours.

Rescue Lickle Ted

Find your way through the maze to rescue Lickle Ted Start

Little bliss • Summer 2013 33

Feature

Bliss needs you!

Bliss is currently developing a new accreditation scheme to help and encourage all hospital neonatal units to embed principles of family-centred care in their work. We’re looking for passionate and committed parents to go to their local units and assess the quality of family-centred care being given. Read on to find out how you can become a Parent Assessor for Bliss.

What is the scheme?

The Bliss Family-Friendly Accreditation Scheme (BFFAS) has been set up to recognise and reward neonatal units which are committed to consistently delivering high quality family-centred care.

The focus is on improvement - can things be done better, and if so, how? Can units learn from each other, and what can they learn from parents?

34 Little bliss l Summer 2013

What difference will it make?

Evidence continues to show that family-centred care improves the short and long term health outcomes of special care babies. As a result of participating in BFFAS we expect to see, over time, increased staff awareness and understanding of familycentred care, improved levels of care on units, improved outcomes for babies, enhanced parent experience and cost savings for hospitals.

Why do we want to get parents involved?

We believe parents should be at the heart of their baby’s care and have a vital role to play in supporting health professionals to achieve the best outcomes for babies.

That’s why we want parents to be at the heart of our new accreditation scheme. Parents must be involved in this assessment of the units to ensure a well-rounded picture of care is achieved.

We want to hear from mums and dads who have had firsthand experience of being a

parent on a neonatal unit, who want to help make a difference.

What are Parent Assessors?

Parent Assessors are trained, parent volunteers who assess family-centred care in local neonatal units. Assessors will be asked to visit local units to ask staff and parents a range of questions about their family-centred care to help establish what areas of care and support units are doing well in and where there is room for improvement.

They will look at things like the standard of facilities for parents, the information and support provided to them, and the quality and level of communication.

Who can be a Parent Assessor?

You do not have to have any other formal training or experience, you just need to be enthusiastic about this role and have a desire to help improve family-centred care on neonatal units. We are looking for friendly and confident individuals who can spare a few hours a month to visit selected units to carry out assessments. You will have to speak to both Health Professionals and parents and families so you should be outgoing and inquisitive while sensitive to the issues and pressures these individuals have to face.

View from a parent... “In 2010 I gave birth to a very poorly baby boy, Luke who was born at 38 weeks weighing 4lb11oz but with serious complications.

After the emotional trauma of Lukes' arrival, I felt there were various issues that were in need of improvement in the units. I wanted to help other parents who were also experiencing similar circumstances and to try to make positive changes. I was put in contact with Sue Robinson at the special care baby unit who invited me along to The Parent Forum.

The group meets approximately every six months with past, present parents/relatives, consultants, research team and the nurses on the special care units. It was a great opportunity to speak about my experience and look at how we can change it. Each meeting we talk about matters arising within the units, questionnaire results that have been sent to parents, new projects and new items for the units/hospital. Most recently we have made a DVD to be shown to parents about the units to prepare them before their admission.

A month or so ago, Sue invited me along to a Bliss Audit Meeting which I am getting involved in. Over the next few weeks I’m meeting up with a colleague of Sue's to look at artwork for the unit.� Michelle Miles, mum to Luke

What next?

The formal accreditation scheme, with parent assessment, will commence in November 2013, however we are currently registering interested volunteers in order to recruit and train assessors ahead of its roll-out. Selection and training are planned to commence this summer.

Get in touch To register your interest in becoming a Parent Assessor or for more information, please contact Zoe Chivers on zoec@bliss.org.uk or go to www.bliss.org.uk/ parent-assessor

Little bliss l Summer 2013 35

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