Newlife Magazine · 2017-04-13 · definitively say why it has occurred. Newlife believes many are...

MagazineWinter 2013

Newlife

Princess Royal Opens New Research CentreCutbacks Hit Disabled Children...

Charity of The Year

IntroductionEvery day across the UK children become disabled or are diagnosed as being terminally ill. Every day families just like yours and mine are affected.That’s why Newlife exists – to support these children and their families when they need it most. Our Newlife Nurses listen daily to families who are facing the trauma of such a diagnosis – answering their questions, listening to their concerns, ensuring they have access to services and helping them to overcome challenges.

The biggest threat to child health comes from being born with a condition – that’s why Newlife is investing in pioneering research around the UK. Investing to understand why and work towards management, treatment and ultimately prevention of conditions. October saw the opening of the Newlife Birth Defects Research Centre, creating Europe’s only such initiative. Working in association with Great Ormond Street Hospital and the Institute of Child Health, we will aim to bring real hope to families.

Every day children are diagnosed with cancers, have life-changing accidents or acquire disabling conditions through illnesses like meningitis. Regardless of why they are disabled, Newlife aims to help them all.

We do this by providing the equipment they need to relieve pain or gain independence, improve safety and help the families caring for them. We also operate an emergency equipment loan service, often rescuing children from risk or getting them home from hospital when statutory services fail.

We know that the frontline health and social care professionals are doing their very best to help the families of disabled and terminally ill children, but they have to deal with a flawed system further undermined by swingeing budget cuts. They tell us that if Newlife wasn’t here to bridge the gap, many children would simply go without.

More UK children are living with disability and life-limiting illnesses than ever before, thanks largely to the advances of medical research. But it is not enough to save a life; as a caring society we need to ensure that every baby, child and young person is supported throughout their life – however long that may be.

Too many families hear ‘no’ and ‘can’t from too many sources – but with your help, Newlife can say ‘yes’. Yes to families having hope through research, yes to carers getting support from our nurses, yes to children who need equipment to overcome life’s obstacles. Yes, together we can make a difference.

So please join us in saying ‘yes’ to disabled and terminally ill children to help even more children in 2013 and give them a really happy new year.

Mrs Sheila Brown, OBE, FRSM CEO of Newlife Foundation for Disabled Children

Pictured with Esther McVey MP, Minister for Disabled People

Magazine4

8 Newlife

16

Nurse ServicesNurse Helpline Ensures Families Are Not Alone.Helping families face challenges that surround caring for a disabled or terminally ill child

18

Campaigns & Awareness

A Better Deal for FamiliesWe’ve been working hard because the needs of disabled children are being overlooked.

26

FundraisingOur Fabulous Fundraisers - A Vital Part Of The TeamTheir ingenuity and efforts enable us to extend our reach to help more families each year.

22

24

Corporate Partnerships

The Midlands Co-Operative Making A Real DifferenceStephen Beresford (Midlands Co-operative Society), on their partnership with Newlife.

Newlife - Charity Of The Year 2012-2013Midlands Co-Operative Society Ltd and HSBC Midlands elect Newlife as ‘Charity of the Year’.

18

8

12

14

Equipment Grants & Loans

Cutbacks Hit Disabled ChildrenMore and more families are turning to Newlife for help as cutbacks hit all areas of the UK.

They Just Can’t Wait - Circle Of Life AppealNewlife is coming to the rescue of an increasing number of end-of-life children.

Newlife Kit Box Loans - For Learning And PlayFor those with a disability, it’s an opportunity to access a variety of interesting and varied aids.

Newlife Research4

6

Royal Opening for Newlife Research CentreThe Princess Royal opened the new Research Centre in October.

Newlife Research = HopeNewlife has invested around £13million in more than 200 research projects at leading institutions.

22

2 Newlife Foundation. Newlife Magazine. Winter 2013 Newlife Foundation. Newlife Magazine. Winter 2013 3

N ewlife has played a leading role in the establishment of Europe’s first dedicated Birth Defects

research centre.

The Newlife Birth Defects Research Centre is based at Great Ormond Street Hospital and the Institute of Child Health in London, where leading researchers will target the understanding, prevention, management and treatment of syndromes, diseases and malformations that affect babies and cause miscarriages and stillbirths.

Newlife has invested £1.5million

The timely opening of the dedicated research centre follows the publication in Summer 2012 of data that reveals that around 42 children are born with a birth defect each day in the UK; that’s one in every 45 live births - and a further one in every 202 pregnancies leads to a termination due to foetal anomaly.

The UK data - released by the British Isles Network of Congenital Anomaly Registers (BINOCAR) - is based on the recording of birth anomalies in six areas of the UK and started in the 1960s, following the Thalidomide scandal.

in the research centre, which was officially opened by the Princess Royal on Thursday 25 October, 2012.

Newlife Medical Director Professor Michael Patton said: “The work of our Newlife Birth Defects Research Centre will have a significant impact on our understanding of birth defects and will have cutting edge research using the latest technology in genetics and developmental biology. This will continue to improve the ability to diagnose and ultimately prevent or treat many of these birth defects.”

Professor Patton said: “It is possible that another crisis like Thalidomide could occur again. This makes the work of the new birth defects research centre even more crucial.”

He added: “The Institute of Child Health works together with University College London and Great Ormond Street Hospital to transfer research into best clinical practice... which will be good for the health of our country as a whole.”

The charity is currently funding seven active research projects at the Institute of Child Health, GOSH and University College London and will continue to fund further research at the new centre which will see Britain leading the way in Europe.

Royal Opening a first for Europe...

Around 1.7million babies are born each year in Europe with a significant birth defect. Individual conditions may be rare, but taken as

whole, these anomalies are effectivley commonplace.

Newlife Research

Pictured: HRH the Princess Royal at the opening of the Newlife Birth Defects Research Centre (Inset).

Families know the real cost of not funding research, in seeing the impact of their babies’ health and ability. For many, whose children have life limiting conditions, research is their only hope.Newlife CEO Sheila Brown, OBE,

‘‘


Full details can be found on our website www.newlifecharity.co.uk But the list featured here

demonstrates the range and depth of the commitment Newlife makes to improving child health.

Disabling Syndrome New findingsYou have probably never heard of Pallister Killian Syndrome, but that doesn’t stop it affecting children all around the world. It is a debilitating condition which causes developmental disability, epilepsy and hypotonia; children with the condition have a distinctive facial look and suffer from vision and hearing impairments, congenital heart defects and reflux cataracts. Diaphragm problems seen in newborns can lead to death shortly after birth. Many of those who live

tested ways for doctors and therapists to respond. None of this would exist without extensive medical research investment.

When a pregnancy begins, who knows what the future holds? Most parents expect all to go well, but too often it can end in a distressing miscarriage and in most of these cases no one can definitively say why it has occurred. Newlife believes many are the result of a birth defect.

Every day, stillbirths occur and the tragedy of a lost life will live with the family for years to come. Only more research will help us prevent and understand why so many pregnancies are affected.

During pregnancy, health services monitor development and offer tests to detect certain conditions. The

to adolescence go on to develop an inverted lower lip, psychomotor and muscular weakness and contractures.

A Newlife research project based in Southampton has found that, while a lot of the literature points to more severe forms of mental handicap, in fact around 27 per cent of children with the condition have milder learning difficulties. This will come as a relief to many families with a recent diagnosis who until now have been told that the level of mental handicap is always severe.

Good news also comes for families as rates of diagnosis have improved. A recent Care Quality Commission report showed that it can take an average of five years to get a specific diagnosis of some conditions. So anything that helps with diagnosis and can lead to improved treatment is worth pursuing.

majority of pregnancies are normal, but when a foetal anomaly (birth defect) is detected the parents are placed in an unenviable situation in deciding what to do next. Sometimes parents can examine the condition and choose to continue, but for others – where the abnormality is serious or potentially fatal to the child – a termination is the reluctant option. This occurs in one in every 202 pregnancies in the UK. Only research investment will help us prevent such conditions and reduce the number of parents facing this terrible situation.

At birth we now know that one in every 45 babies will have a serious birth defect. In addition, we believe another 45 will have lesser but none-the-less distressing problems. That is why Newlife will continue to invest in pioneering research.

The research also found there was a small increase in the incidence of the condition in relation to maternal age, which may help us in future research projects to learn more about Pallister Killian Syndrome.

Newlife’s continued funding of pioneering research is shining a light on important conditions that disable our children and cause early death.

Does research matter? AbsolutelyWe all take a paracetamol or aspirin when we need it. But without someone investing in the research that developed these drugs, they wouldn’t exist.

We know that when we experience trauma, accident, infection or disease, in the main there will be tried and

Research = HopeNewlife has invested around £13million in more than 200 research projects at leading institutions and hospitals across the UK.

Save Our BabiesBirth defects, miscarriage, stillbirths and terminations due to

serious foetal abnormality all take their toll on the lives of families and affect the future of our children’s health. Research holds

the key, and that’s why Newlife is calling for more investment in medical research into birth defects, and has launched the ‘Save

Our Babies’ Appeal - to give our newborns the very best chance of a healthy start and a full life.

We are appealing to individual donors to fund a day’s research for just £248. Newlife guarantees that every penny will go directly to fund this important work, with supporters getting feedback on the research supported.

Whether it’s to say ‘thank you’ for healthy new life in your own family, to celebrate your birthday or to commemorate the life of a loved one, please invest in helping Newlife to create a healthier tomorrow for thousands of children.

To support the Save Our Babies appeal please visit www.newlifecharity.co.ukor call our fundraising team on freephone 0800 988 4640.

Researched ConditionsNewlife has funded research projects targeting a wide range of conditions, grouped together into topic groups. Just click on the + sign next to any topic on our website to see a detailed list of research funded:

• Brain,cerebral

• Sensory,visual,hearing,speech

• Limbs,mobility,dexterity

• Genetics,genefunction/role,diagnosis

• Syndromes,diseases

• Pregnancy,inutero,prematurity, fertility

• Facial,palate,

• Muscular,skeletal

• Abdominal,gut,bowel

• Incidence,population,environmental

• Neuraltube,brain/spine/nerves

• Genital,urinary,gender

• Organspecific

• Cardiac,respiratory

• Hormonal,glands,metabolic

• Skin,dermatology

• Infection,bacteria,viral

• Blood,veins,arteries

Newlife Research


Teenager Alex Jordan, from Worcester, has a hi-tech wheelchair with sit-to-stand facility; this has helped enable him to continue his science studies to BTEC level.Oliver, Aged 11

T he charity introduced its Equipment Grants scheme as a pilot project in 2004, as a direct result of families voicing their concerns about difficulties in accessing

equipment. It quickly became obvious that this need was considerably greater than anyone had previously anticipated.

The early applications were for items like bedding, seating and basic manual wheelchairs, but the range of equipment has since mushroomed to include hi-tech powered wheelchairs, specialist beds and car seats, sleep systems, walking and standing frames, portable hoists, sensory and communication aids.

These are not luxury items, but pieces of equipment designed to facilitate every day life; wheelchairs to enable youngsters to access mainstream schools, sleep systems to help delay or even prevent invasive surgery, portable hoists to allow children to take part in sporting activities and communication aids so they can tell their families when they are hungry or in pain.

Public sector budgetary cutbacks have featured prominently in the news for some time now, and are progressively impacting on the provision of equipment and services to disabled children. We hear anecdotal reports from families and health professionals that when they apply for funding the reply comes back ‘No budget available’.

The cutbacks have meant councils and health providers have had to reduce service provision across the board and disability is often seen as a ‘soft cut’ - i.e. families of disabled children are less likely to lodge official complaints. So they reduce disability budgets and then – half way through the financial year - what little money there was simply runs out. This year (2012), this has coincided with a 95 per cent increase in October applications to Newlife.

The facts are simple - if Newlife cannot find the funds to help these children they will simply go without. Many other charities have closed their doors to applications, have two-year waiting lists or have introduced means testing. This leaves families with virtually nowhere else to turn and so Newlife and its supporters are left to bridge the yawning gaps left by failing statutory services.

Cutbacks hit disabled children...More and more families are turning to Newlife for help as cutbacks hit all areas of the UK. In fact, in October 2012 saw a 95 per cent increase in applications for Equipment Grants on the same time last year.

Equipment Grants

Newlife believes that around 250,000 children in the UK are living without the specialist equipment they need. To date, we have funded more than £8.2 million of this equipment for in excess of 5,400 children. In the first six months of 2012 alone, we awarded 472 grants totalling £723,539.

It’s a truly awful shame, but we regularly hear of ‘reasons’ why disabled and terminally ill children are denied equipment they desperately need. Many of you will see behind these so-called ‘reasons’ and appreciate them as the excuses that they really are.

We have shared our ‘Can you believe it?’ stories with supporters and volunteers and they have urged us to spread the word about the failed system that is depriving children of the equipment they need to be able to overcome their disabilities.

Ben, 13, died before his equipment arrived. He suffered from Hunter’s Syndrome; in the last three years of his life he lost the ability to see, hear, walk, talk and eat solids and screamed in pain every time his parents picked him up to take him up and down stairs. Eventually, Ben’s local authority provided the mechanism for a stair hoist. Tragically, the sling to use with it arrived the day after his funeral.

Lewis, aged five, was denied the wheelchair he needed for mainstream school - sentencing him to a life in special education. A Newlife grant of £1,947 gave Lewis, who has cerebral palsy and is described by his mum as ‘bright as a button’, the chance to join his sister and friends at his local school.

The parents of 14-year-old Graham were advised to sit him on a bucket in the garage and pour water over him after the family had applications for an adapted ground-floor shower room and then a stair lift rejected by statutory services.

Alice was four and suffering from photosensitive epilepsy when her parents contacted Newlife. They had had the windows of their car blacked out, so they could transport her to and from school. But she needed a specialist car seat – costing £771. Statutory services refused to fund this, instead offering costly daily transport in an adapted taxi accompanied by a medically trained guide. Newlife funded the £771 car seat.

Can you believe it?


Equipment GrantsNewlife is helping children everyday, these are just a few of their stories.

Mylo’s occupational therapist advised Katherine and Andrew to apply to Newlife for help. When our nurses received the application they realised that without the car seat Mylo would not be allowed home - so they fast-tracked the request, ordering the equipment the following day.

The car seat - costing £636 - arrived shortly after, allowing Mylo to be discharged from hospital.

Andrew Jelley said: “Getting Mylo home was a real issue. He definitely can’t use a regular car seat because they don’t have adequate head support. He has to use a rear-facing seat which, because of his size and age, is larger and has extra head support.”

Fast-track seat rescues Mylo from hospitalA Newlife car seat meant little Mylo Jelley could leave hospital and go home to his family.

Mylo, from Sutton on Sea in Lincolnshire, fell into a garden pond when he was 13 months old and as a result has an acquired brain injury.

He spent several months in hospital in Nottingham before doctors said he was well enough to return home. But mum Katherine Brooks and dad Andrew Jelley had a problem.

Mylo’s condition means he cannot travel in a standard car seat; they needed an expensive specialist piece of equipment, for which there is no statutory funding.

The car seat is now an integral part of family life, enabling Mylo to access regular hospital and clinic appointments.

‘I love you’ means everythingTwelve-year-old Jemil Demirel from Basingstoke in Hampshire has Quadriplegic Cerebral Palsy and is unable to talk; but he was able to tell his family he loved them for the first time in his life, using a specialist communication aid provided by Newlife.

Jemil had had use of a similar piece of equipment within his primary school but when he moved up to secondary education this was withdrawn, leaving him without any means of communicating.

Dad Ali Demirel said: “This means everything to us as a family. I will always remember those three words - it’s just fantastic. Jemil loves to talk; this has given him his voice.”

The £5,580 hi-tech machine means that Jemil can now talk about anything he wants to, from discussing his favourite TV shows to asking strangers how old they are!

Jemil Demirel, Aged 12

Mylo Jelley, Aged 18 months

‘‘ This means everything to us as a family. I will always remember those three

words - it’s just fantastic.

Getting Josey back to schoolJosey Loft, from Hull in East Yorkshire, is 11 years old; her family were told she would have to wait months for an assessment for the specialist wheelchair she needs to stop her screaming in pain.

Josey has a rare and progressive neurodegenerative disorder which is life limiting. She also has severe scoliosis and bilateral dislocation of her hips which make it difficult for her to sit in comfort. Josey has a standard manual wheelchair, but because it isn’t designed to support her individual needs she can’t sit in for more than an hour at a time without crying out in pain. This has left the family virtually housebound and prevented Josey from attending her special needs school in Hull on anything more than an occasional basis.

Mum Mandy Jewitt said: “Josey’s specialist has written to wheelchair services because a better chair would help correct her position and improve her posture and comfort. But we were told in October 2012 that, despite being on the emergency list, Josey cannot even be assessed for a new wheelchair until after Christmas. And there is no guarantee that wheelchair services would be able to provide the sort of equipment that Josey really needs.”

Mandy told Newlife: “Josey is in so much long-term pain from using the current wheelchair that she has trouble sleeping. We have to give her a painkiller before she uses it, but the side effect of this is that the tablets make her stomach bleed.”Newlife had previously provided Josey with a specialist car seat, so mum Mandy rang our Nurse Helpline for advice. Three days after receiving her application for a bespoke wheelchair - at a cost of £2,912 - the equipment was placed on order.

Newlife Lead Nurse Karen Dobson said: “Every Equipment Grant we approve is designed to meet a real and pressing need. In Josey’s case we realised the particular urgency of the situation and fast-tracked her application. No child should have to endure pain and isolation - not to mention potential long-term effects to their health - for want of the right equipment. Early intervention is the key to the prevention of long-term complications and added distress to a family who are already struggling.”

Mum Mandy says: “I can’t believe how fast Newlife was able to act. Josey is due to get her new wheelchair - with a specialist seat moulded to her shape to provide maximum support and comfort - before her wheelchair services emergency assessment appointment could even have taken place.”

She added: “Of course we would like to be able to buy everything Josey needs ourselves, but I had to leave my job because of her health issues when she was born. Over the past two years we have found it increasingly difficult to get the right equipment for Josey. Her condition means that she is already disadvantaged but it seems as though she is being further penalised by being denied basics like comfort and the opportunity to go to school.

“Josey is a very sociable little girl and loves going to school - and we have all been going stir crazy, stuck in the house. She deserves more from life and this new wheelchair will help her achieve that. Thank you Newlife.”

Josie Loft, Aged 11

‘‘ She deserves more from life and this new wheelchair will help her achieve that. Thank you Newlife.

Mandy, Josie’s Mother

In your countyAt any given time, Newlife will be working with the families of

children across the UK with equipment needs in excess of £200,000.The demand on Newlife resources may fluctuate, but in reality the charity has seen requests for equipment steadily increase. We know that volunteers and fundraisers like to help children in their immediate areas and for that reason we restrict donations within county boundaries. So, for instance, if money is raised in Bedfordshire it will stay in Bedfordshire - and we will let you know exactly how the money you have raised has been spent. If you think you can help, the Newlife Community Fundraising Team can be contacted on freephone 0800 988 4640

Equipment Grants


W e launched our emergency equipment loan service because we found cases where children had died before the items they needed could be supplied by

their local statutory services.

‘Just Can’t Wait’ aims to get specialist disability equipment to children’s homes within just 72 hours, wherever they are in the UK. Introduced in 2011, it is the only free service of its kind for terminally ill youngsters in Britain. It makes a major difference to children – in managing their pain and care – and also to their parents.

Just Can’t Wait helps the growing number of children who are diagnosed as end-of-life, with practical support from equipment-provision partners including Theraposture, Chunc, Midshires and R82. Health professionals and parents alike have been generous with their praise of Just Can’t Wait, describing it as ‘fast and timely’ and ‘brilliant’.

Just Can’t Wait’s quick response has enabled children to experience one last holiday with their families, allowed others to be cared for at home instead of in a hospice and supported divorced parents in sharing care. All of these children have found relief from pain or isolation as a result of Newlife-funded equipment.

Newlife is coming to the rescue of an increasing number of end-of-life children who urgently need specialist support.

Equipment Loans

Circle of Life AppealTerminally ill children are suffering

because of lack of equipment. We know that if we can bring more equipment into the system of provision we can help more families. We estimate that any one piece of equipment will be used by up to three children over a two-year period. The Just Can’t Wait suite of equipment currently available comprises wheelchairs, buggies, hoists, beds and cots.

Our Circle of Life Appeal aims to expand both the range and number of aids in our equipment bank so no family would be turned away. We are seeking an environmentally aware partner to help us recycle more equipment to help more children. Interested?

Then call Neil Preston on 01543 462 777.

Three-year-old Evie-Anne Peel, from Chelmsley Wood in Birmingham, had outgrown her standard cot and kept getting her arms and legs trapped in between the rails. Her parents had resorted to propping it up with books at one end to reduce her risk of choking, due to her life-limiting condition.

Evie-Anne has a rare chromosomal abnormality which results in severe developmental delay, low muscle tone, epilepsy and visual impairment; she has an anatomically small stomach and is prone to vomiting. All this means she can’t use a regular bed and her local statutory services couldn’t provide a safe child-sized specialist bed, despite her significant disabilities.

Parents Michelle and Mark said: “Quite clearly, a hospital bed would not meet Evie’s needs in any way and would, in fact, have put her in danger because she could easily have slipped through the rails. Nothing else was offered and we were advised to apply to a charity for a profiling cotbed.”

A few days after contacting Newlife, a £4,569 specialist cotbed was delivered. Michelle told Newlife’s nurses: “I just cannot explain how much this means to me and my family. Evie-Anne is such a brave little girl; every day I feel like I have let her down knowing I cannot provide her with the expensive specialist equipment she needs. For a charity like Newlife to enter our lives and offer us hope is amazing; I cannot thank you enough.”

I just cannot explain how much this means to

me and my family. Evie-Anne is such a brave

little girl; every day I feel like I have let her down

knowing I cannot provide her with the expensive

specialist equipment she needs. For a charity like Newlife to enter our

lives and offer us hope is amazing; I cannot thank

you enough.Michelle, Evies mother

The quick response from Newlife is ‘Amazing!’‘‘Evie, Aged 3, Birmingham

They ‘Just Can’t Wait ’...

Equipment Loans


‘‘Kit for learning & playPlay is important to all children, but for those with a disability the opportunity to access a variety of interesting and varied aids may not be a reality.

F amilies have difficulty finding the right items and it’s not unusual to be shopping for a 15-year-old in the Early Learning Centre, just to get basic equipment.

Many items of specialist sensory equipment are around £200 each, putting them beyond the financial reach of many of the families we support. The Newlife Kit Box scheme was launched to help alleviate this financial burden and to enable children to trial equipment.

Our Kit Boxes cost just £350 to create and we started the service in 2011 as a direct response to parents’ concerns that they couldn’t access appropriate sensory and development toys and aids, free of charge, for use at home.

Newlife Kit Boxes fall into four categories: tactile, visual, sound and interactive. Each contains between £300 and £400 worth of equipment and is available to borrow from the charity by contacting the Newlife Nurse Helpline on 0800 902 0095 or by emailing [email protected]

Newlife Lead Nurse Karen Dobson says: “Sensory equipment is effective for children with visual impairment, can have a calming effect on those with behavioural and issues and stimulates others with learning difficulties. The use of sensory equipment encourages children to get more control over their bodies and their environment and can be a fun way for families to interact. They can also be used as part of a home education programme with input from therapists.

“The loan period is 12 weeks and many families use our Kit Boxes to find out what sort of aids and toys best suit their child before either buying the items for themselves, applying to charities like Newlife for funding or approaching us for another box to continue the good work.”

Tehya is engaging with the world through touch and soundTwo-year-old Tehya Furley, from Poole in Dorset, has retinal blastoma, Global Developmental Delay and a chromosomal abnormaility. Mum Tammy said: “Tehya lost one eye at three months old, and shortly after that we found out she had a tumour in her other eye. She has undergone laser surgery and chemotherapy but has now lost her vision.

“When it comes to playing, Tehya is quite isolated. She needs specialist sensory toys to help bring her out of herself and make her work a bit harder to engage with the world around her. Tehya really loves the musical toys and aids which seem to soothe her, particularly when she is getting grizzly. My neighbour heard her out in the garden and thought we had bought some wind chimes. I was really proud to be able to tell them that it was Tehya making the music herself. It’s such a big step forward for her.

“Access to sensory equipment at home is very important for Tehya’s development but it is expensive to buy, which is why Newlife’s help is so appreciated.”Jessica Black touch and sound toys...

Three-year-old Jessica Black from Birmingham has Zellweger Syndrome, a rare genetic congenital disorder which is life-limiting, causes severe motor delay and has left her partially sighted.

Mum Lisa-Marie said: “Having access to specialist sensory equipment for Jess is so important. It is a great idea to be able to trial different toys and aids before buying because they are very expensive and different children like different things. The Newlife Kit Box has been very helpful because it gives me an opportunity to play with Jess at home.”

Jessica Black, Aged 3

Tehya Furley, Aged 2

Kit Box AppealCould you help one

of the children in current need? Newlife has a growing waiting list of families all around the UK who are queuing up for our Kit Boxes. A donation of £350 would fund a box for use in your area by up to four families a year. If you think you can help, the Newlife Community Fundraising Team can be contacted on freephone 0800 988 4640.

When it comes to playing, Tehya is quite isolated. She needs specialist sensory toys to help bring her out of herself and make her

work a bit harder to engage with the world around her.Tammy, Tehya’s mother

‘‘

It is a great idea to be able to trial different toys and aids before buying because they are very expensive and different children like different things.

Lisa-Marie, Jessica’s mother

‘‘

Emily Carey visual and touch toys...Two-year-old Emily Carey from Devon is enjoying her Newlife Kit Box. Mum Becky said: “Emily has an undiagnosed condition which results in severe epileptic seizures; she has low muscle tone which means she can touch things, but can’t pick anything up. Consequently, most of her playing comes from watching or touching and it is very difficult to find appropriate toys at a sensible price.”

Becky added: “Emily loves the visual items and seems to better appreciate what is going on around her. It is all progress.”

Equipment Loans


Nurse HelplineAn invitation to ...call Karen with Newlife lead nurse Karen DobsonNewlife’s mission is that no family should feel they are alone in facing the challenges that surround caring for a disabled or terminally ill child. That is why Newlife Nurses exist.Question: How can parents and carers contact the Newlife Nurse Helpline?

Karen: Our freephone telephone number is 0800 902 0095. I head up a team of disability-experienced nurses dedicated to helping families with information and practical support. We are a confidential reference point and no query is too trivial or too important. Each child and family experience is unique, so our help is tailored to individual needs.

And you don’t need to be a parent or direct carer to call us. We welcome enquires from grandparents, aunts and uncles and even worried friends.

The Helpline is open Mondays to Fridays 9.30pm to 5pm and until 7pm on Wednesdays. There is also an instant messenger-style online Live Nurse Chat service available 24 hours a day. Or you can email us at [email protected].

Question: How can Newlife Nurses support the work of your child’s health professionals?

Karen: We find that many people feel too shy to ask questions of their child’s doctors, physios or community nurses. Families are frightened that they might appear foolish and don’t want to be judged. Others will go away from consultations and meetings only to find that they are still thinking of questions they want to ask. Waiting for the next consultation can seem like a lifetime away – which is where we can be of help, providing up-to-date, accurate information.

Our Nurse resources include practical publications which are free to download from the Newlife website - www.newlifecharity.co.uk/whatnextThese are designed to help people find a way forward and are based on the real experiences of other families.

Question: What sort of things do parents ask?

Karen: Most parents will at some time ask ‘Why me?’, ‘Why us?’, ‘How will we cope?’, ‘What will the future hold?’ Asking questions and wanting answers or information is a very natural human response as we try to make sense of the situation and manage it.

Many parents look back and describe a journey which began with an enormous shock – but they find ways to manage, reorganise and adjust. As time progresses they discover they are learning new skills and strengths which will help both themselves and their child into the future. We are here to help them on that journey, drawing on our own experiences as community, high dependency and intensive care nurses to talk through situations and explain what parents and carers should expect from their health professionals.

We also get a lot of queries about managing finances, accessing benefits and statutory support services, finding parent support groups and challenging education decisions. We signpost people to relevant organisations and agencies that can help. And wherever Newlife can provide practical support we brief them on our own range of services, while encouraging them to stay plugged in to mainstream provision.

Every time I have spoken to the nurses I have found them extremely helpful; they

have been amazing.Mother

‘‘ ‘‘

Nurse Services

Poster AidWhat if there is a family in your area which

needs our help but doesn’t know where to turn? You could help them by putting up a Newlife poster - maybe in a staff canteen, on a community message board or in your local GP surgery or clinic - or handing out leaflets at a local special school or hospital.

Call Heather Campbell on 01543 468 888 to find out more. You could even help fund a Nurse to staff our national helpline, for more information about this call Michelle Perks on 01543 468 888.

www.newlifecharity.co.uk

Question: So, what practical support do you offer?

Karen: We are the ‘gateway’ to Newlife’s equipment grants, emergency equipment loans and sensory loan box service, all of which are free of charge. We explain how to apply for these services and liaise with families’ dedicated health professionals to ensure they get what they need.

Question: What if English isn’t my first language?

Karen: Our website offers an instant translation service, available in 65 languages as diverse as Basque, Gujarati, Malay and Slovak. There is also a free information service dedicated to inborn conditions (birth defects). The service has been created to give families, patients and health professionals understandable, regularly updated key information about over 3,000 conditions.


Disabled And Dying Children Failed By Statutory ServicesThe voices of over 4,300 health and social care professionals informed the writing of Newlife’s national report - ‘From the Front Line. This looked into why, at local level, children were beings denied equipment. We went directly to the front line professionals – OT’s, Physio’s, GP’s and others. We asked why it was that they were driven to support applications to Newlife, rather then get the local statutory services to fund equipment. We also asked them, what the reasons were for applications to be denied, when they did apply locally.

In summary, we learnt that professionals were frustrated, in fact over 70% of these professionals know there is no point in wasting time and leaving a child without provision, by applying locally, because they are aware of lack of funds or restrictive policies. When they did apply and they were refused, the same reasons applied, lack of budget and restrictive local polices.

So while many people have said why they think provision of equipment is failing, now we know, from the people who really know, that it is lack of funds and lack of understanding about the type of equipment needed, leading to poor policies, that are at the heart of the issue.

Newlife now intends to use the data to call upon the new, individual Health and Wellbeing Boards, to provide a better deal for disabled children.

Campaigning & AwarenessWe’ve been working hard to secure a better deal for families because the needs of disabled children are being repeatedly and systematically overlooked. Cutbacks are progressively worsening the situation.

A better deal for families...

Campaigning & Awareness

So, what are we doing now?We are currently in discussions with Motability to secure provision of specialist car seats for families who use its scheme. And while the earlier amendment to the Road Traffic Act is an excellent move towards modernising the legislation, we continue to campaign on behalf of those older disabled children who require powered wheelchairs which currently fall outside the Class 3 150kg limit.

We are also continuing the dialogue regarding DLA with the new Minister for Disabled People, Esther McVey.

T hat is why the Newlife Campaigns and Awareness team listens to and understands the needs of families to work with policy makers at

all levels, from Parliament to Town Halls.

Our mission is to ensure that families are treated fairly and that the impact of their experiences help shape a better future. A future where it’s not what you can’t do that matters, but what you can do - given the right support, equipment and opportunities.

Building on the success of our 2007 report It’s Not Too Much To Ask - which looked at the budgets of individual statutory services in relation to disability equipment provision - we are now focusing on our It’s Not Too Much To Ask... To Get Kids Moving campaign.

This has three current aims:

• Toseespecialistcarseatsincludedinthelistofessentialequipment for disabled children under the age of 12.

• TosecureanamendmenttotheRoadTrafficAct1988to increase the weight limit of Class 3 wheelchairs from 150kg to 200kg.

• ToextendeligibilityforthemobilitycomponentofDisability Living Allowance to disabled and life-limited children under the age of three.

This follows the announcement on March 1 2012 by DfT Minister Norman Baker MP that the weight of wheelchairs within the Class 2 category was being increased to our recommended 150kg. This has given thousands more children access to a wider range of hi-tech powered wheelchairs.

18 Newlife Founda- tion. NewlifeMagazine. Winter 2013 Newlife Foundation. Newlife Magazine. Winter 2013 19

A s a democratic organisation, we feel it is very important that our charity is chosen by our colleagues. Newlife Foundation was nominated by a

member of staff and met the stringent criteria used to vet all organisations which apply to be our charity partner. All Midlands Co-operative employees were then asked to vote for one of three colleague-nominated charities and Newlife Foundation was chosen to be our charity for 2012-2014.

Newlife was chosen by colleagues because it provides fantastic support to disabled children and it guarantees that 100 per cent of the money raised goes to children in need. Importantly, the charity was also able to guarantee that all of the money we raised would be spent on providing vital equipment to children living in the area in which we trade, thus making a real difference locally.

As colleagues are closely involved with choosing our charity partner, they are engaged with the charity from the first day of the partnership. This engagement has been strengthened by a strong programme of internal communications and visits to all of our outlets by charity representatives. In return, our Society has benefitted from increased press coverage and colleague engagement. Our Society takes Corporate Responsibility very seriously and our charity partnership is important for community awareness and reinforcing our brand values; it enables us to give something back to the local community.

Fundraising activities take place in a number of formats including raffles, fun days, open days, skydives, marathons etc. Our Society has also been able to help raise awareness of the charity through features in our very popular members’ magazine; by branding two of our lorries with the Newlife logo and by helping to produce a film for the charity outlining the vital work that it does.

The partnership is proving to be very successful and a strong relationship has been developed between our two organisations. The charity is very transparent and professional in its approach, which makes it an excellent organisation to work with.

Making A Real DifferenceColleagues of Midlands Co-operative Society are passionate about raising money for local charities and have raised over £2million for good causes in our trading area over the past ten years.

‘‘

‘‘

The partnership is proving to be very successful and a strong

relationship has been developed between our two organisations. The charity is very transparent

and professional in its approach, which makes it an excellent organisation to work with.

Stephen BeresfordHead of Corporate AffairsMidlands Co-operative Society

‘‘ Newlife was chosen by colleagues because it

provides fantastic support to disabled children and

it guarantees that 100 per cent of the money

raised goes to children in need. Importantly, the charity was also able to guarantee that all of the money we raised would

be spent on providing vital equipment to

children living in the area in which we trade,

thus making a real difference locally.

Stephen Beresford Head of Corporate Affairs

Midlands Co-operative Society

Corporate Interview


Charity of the YearNewlife is currently working with the Midlands Co-operative Society Ltd and HSBC Midlands as their elected ‘Charity of the Year’.

Staff fundraising is a fantastic boost to Newlife’s equipment grant services in these businesses’ trading areas. And we are able to tell not only the businesses

involved and their staff exactly where and how the results of their fundraising efforts are being spent, but their customers and the wider public too.

Charity of the year

Become a charity partner

If you and your staff would like to help disabled and terminally ill children ...in your specific trading area – or across the UK as a whole - you can discuss Charity of the Year status by contacting our Newlife Community Fundraising Team on...

Freephone 0800 988 4640.

New for 2013We will be working with Midlands auction

house Cuttlestones as their Charity of the Year, supporting a wide range of activities in the

Staffordshire and West Midlands areas.

Co-operative fundraising, which kicked off in May, has seen a variety of events taking place including in-store activities, quiz nights, a car boot sale, community fun days and sporting challenges. The first three months of the partnership saw £38,114 raised for Newlife children.

Many Co-op staff have gone that extra mile. In Mark Green’s case it’s more than 160 miles. Mark is the manager of a Midlands Co-operative foodstore in Warwickshire. He broke both arms and legs in a motorbike accident in 2011 but just 12 months later he took on a four-day sporting challenge in aid of Newlife. He successfully swam 12-and-a-half miles, cycled 150 miles, rowed 100,000 metres and completed 2,000 press-ups and 4,000 sit-ups – raising in excess of £1,400.

Sky-diving has been a popular fundraising option and intrepid Co-operative Funeral Care administrator Dani Collins, aged 21 and from Birmingham, combined her first-ever flight with her sky-diving exploit at 10,000 feet over the Oxfordshire countryside.

HSBC Midlands staff will have raised around £60,000 for us by the end of their Charity Year in December (2012). The staff have thrown themselves into a wide range of activities, which have included a ‘Global’ fundraising fancy dress day in June, involving all 187 branches. Street parties, a cycle-thon, sponsored walks and auctions all helped pile up the pounds!

HSBC Global Day

Mark Green with Co-op colleagues as he prepares for his challenge

Main Photo: Dani Collins is all smiles for her sky dive.

22 Newlife Foundation. NewlifeMagazine. Winter 2013 Newlife Foundation. Newlife Magazine. Winter 2013 23

Fabulous Fundraisers Our fabulous fundraisers are a vital component of the Newlife team. Their ingenuity and efforts enable us to extend our reach to help more and more families each year.

S ome of our supporters take on sponsored sporting challenges – sky diving, mountain walking, cycling, marathon running and the annual Newlife Santa

Dash. Others prefer activities like hosting coffee mornings, jewellery sales and fashion shows (both with stock provided by Newlife), pub quiz nights, university ‘rag’ weeks or musical productions.

Newlife volunteers are making their presence felt all around the UK and some of them have even become ambassadors for the charity, recruiting fundraisers and raising awareness of how we help vulnerable children and their families in their own areas.

We welcome the support of all our fundraisers, whether the amounts involved are big or small. An increasingly popular way for supporters around the UK to do their bit is by taking delivery of a Newlife jewellery box – with stock provided through our corporate partnerships. The jewellery can be sold at coffee mornings, school fetes, in staff canteens . . . the possibilities are endless.

Newlife also offers volunteering opportunities at its Cannock headquarters. As well as graduate internships, we give people the chance to come into our Opportunity Centre to help prepare stock for sale in our three Staffordshire stores.

Councillor James Vickers Raised almost £90,000One of our ambassadors is Councillor James Vickers, who raised almost £90,000 for us during his Mayoral year in Elmbridge, Surrey; his support continues in his current role as Master of The Worshipful Company of Joiners and Ceilers.

James said: “Newlife made a real impact on me during my Mayoral year, and the professional way in which it operates meant I could, in turn, make a real impact on the lives of disabled children in the county. Visiting the charity to see for myself what goes on motivated me to want to continue to support Newlife. In fact, I would urge anyone considering supporting Newlife to visit its headquarters.”

He added: “What is important to me as a fundraiser is knowing that - due to the trading business and the money it generates – not one penny I raise will go into administration costs; it all directly helps children through the charity’s range of services.

“For me, what makes Newlife stand out is the nurse-staffed helpline; when parents call in they can talk to people who know what they are going through and can offer the most appropriate guidance in a very sympathetic way. Furthermore, Newlife acts quickly for those in need with less red tape and hoops to jump through to get that all important fast response for help.”

Carol Edwards Raised £52,000Newlife ambassador and former social worker Carol Edwards has raised £52,000 through a series of jewellery and clothing sales at venues across north Staffordshire.

Carol says: “I started off with a crate of jewellery a few years ago and haven’t looked back. Getting together with friends to sort jewellery ready for sale can be a good social event - it’s an excuse to see each other and maybe follow it up with lunch or a drink.”

She added: “I get a lot of enjoyment out of fundraising and giving talks about the work Newlife does. Every time I bank money for the charity I get a letter telling me exactly how it is being spent; it is very rewarding to know that someone’s life is a little easier. And - even though you may lead a busy life - most people could still find time to do that bit extra.”

Marriot Hotel Raised £22,000Groups of staff at hotels in the prestigious Marriott chain have been doing their bit to support Newlife, too. Activities have included a sponsored cycle ride and numerous collections, with London’s Marriott Hotel Grosvenor Square supporting us through fashion shows, clothing sales and a bedroom appeal. Activities at the Marriott Hotel Grosvenor Square alone have netted more than £22,000 for disabled children.

‘‘ I get a lot of enjoyment out of fundraising and giving talks about the work Newlife

does... it is very rewarding to know that someone’s

life is a little easier.Carol Edwards

‘‘ Visiting the charity to see for myself what goes on motivated me to want to continue to support Newlife. In fact, I would urge anyone

considering supporting Newlife to visit its headquarters.Councillor James Vickers

Heroes and Heroines

Every one of our customers are heroes and heroines too!Of course, every one of our customers is a hero or heroine too - every pound they spend helps support Newlife’s charitable aims. And if you live too far away from our three stores, you can still be a shopping hero or heroine by logging on to: http://bit.ly/NewlifeEbay

VolunteerWould you like to become an important

part of the Newlife volunteering team? If you think you could spare a few hours of your time to help support Newlife, our Community Fundraisers can be contacted on freephone 0800 988 4640

Shop with Newlife at... http://bit.ly/NewlifeEbay

24 Newlife Foundation. NewlifeMagazine. Winter 2013 Newlife Foundation. Newlife Magazine. Winter 2013 25

Stingray

Try the fully featured, postural support buggy from R82 to meet your child’s needs without compromising design

Telephone 0121 561 2222R82 UK Ltd, Unit D4A Coombswood Business Park East

Halesowen. B62 8BH. www.R82-uk.co.uk

Individual designs and endless benefits Bespoke care cots from Theraposture

YOUR INDEPENDENCE, OUR COMMITMENT

Handcrafted by specialists with over 30 years experience, the bespoke paediatric care cot range from Theraposture is first choice for healthcare professionals and consumers alike. Following a free assessment, they are individually designed to meet specific needs and supplied with the Theraposture no-quibble seven day suitability guarantee.

Freephone: 0800 834654Email: [email protected] www.theraposture.co.uk

Quote:

‘Newlife’ for details

of all Theraposture Cots

Theraposture Ltd., Kingdom Ave., Northacre Industrial Park, Westbury, Wiltshire BA13 4WE. Open: Mon–Fri 08:30–17:30, answerphone messages can be left at other times

0515THERadNewLifeQPv2.indd 1 10/12/2012 10:03

Putting People First

To request FREE Special Needs Children’s Catalogue

Tel. 0845 121 8114or email [email protected]

Online Catalogue : www.nrs-uk.co.uk

NRS Healthcare, Clinitron House,Excelsior Road, Ashby de la Zouch,Leics. LE65 1JG

for Children & Young Adults with Special Needs,including our own Award Winning designs

Product Advice Helplinemanaged by our Occupational TherapistDemonstration Service on high value ortechnical Products

Over 500 Daily Living Aids & Activities

FREE

FREE

Supported by our Award Winning Customer Service team

Wheelchairsposture and mobilityfor young people Beds & Mattresses

For Challenging Environments

Advertising


Newlife Foundation for Disabled Children . Tel: 01543 468888 / 462777 . Email: [email protected] . Website: newlifecharity.co.uk

Newlife Centre, Hemlock Way, Cannock, Staffordshire WS11 7GF. Registered Charity Number: 1001817 in England & Wales

facebook.com/newlifefoundation twitter.com/newlifecharity youtube.com/NewlifeFoundation

Date post:	06-Jul-2020
Category:	Documents
Upload:	others
View:	1 times
Download:	0 times

Newlife Magazine · 2017-04-13 · definitively say why it has occurred. Newlife believes many are...

Documents