Newlife Charity Impact Report - 21 Years of Care and Action by Newlife the Charity for Disabled Children

Contents Foreword.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 02 - 03

Nurse Services

Equipment Grants And Loans

A free ‘gateway’ to professional advice. . . . . . . . . . . . . . . . . 32 - 33

Volunteer and community fundraising. . . . . . . . . . . . . . . . 64 - 65

Enabling children’s lives. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 06 - 07

Research

36 - 53

Newlife fundraising partnerships. . . . . . . . . . . . . . . . . . . . . . . 66 - 67

More independence for Mathew.. . . . . . . . . . . . . . . . . . . . . . . 08 - 09

Gene map.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38 - 39

Unique recycling partnerships. . . . . . . . . . . . . . . . . . . . . . . . . . 68 - 69

A safe journey for Jamie. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 - 11

‘Rare syndromes are common’. . . . . . . . . . . . . . . . . . . . . . . . . . 40 - 41

Challenges and Trusts.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70 - 71

A chance to learn for Oliver. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12 - 13

Unlocking doors to improving child health. . . . . . . . . . . 42 - 45

Thank you.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72 - 73

Life on the move for Charlotte.. . . . . . . . . . . . . . . . . . . . . . . . . . 14 - 15

Research ‘making a difference’. . . . . . . . . . . . . . . . . . . . . . . . . . 46 - 47

Our Vision

A ‘safe space’ for Emily. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 - 17

What do researchers say?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48 - 49

Thank you.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 76

The right posture for Paul. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18 - 19

Research ‘The next generation’.. . . . . . . . . . . . . . . . . . . . . . . . . 50 - 51

A good night’s sleep for Sean.. . . . . . . . . . . . . . . . . . . . . . . . . . . 20 - 21

Real Research around the UK. . . . . . . . . . . . . . . . . . . . . . . . . . . . 52 - 53

Equipment Loans.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22 - 23

Campaigning And Awareness

Maia’s Story.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 - 25

Campaigning - Twenty years of action. . . . . . . . . . . . . . . . . 56 - 58

Tom’s Story. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 - 27

Awareness - So families know where to turn.. . . . . . . . . 59 - 61

04 - 29

30 - 35

Fundraising & Partnerships

62 - 73

74 - 75

54 - 61

Helping disabled children across the UK.. . . . . . . . . . . . . . 28 - 29

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27/03/2013 21:03

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If we could bequeath one precious gift to posterity, I would choose a society in which there is genuine compassion for long-term sick and disabled people; where understanding is unostentatious and sincere; where needs come before means; where if years cannot be added to their lives, at least life can be added to their years; where the mobility of disabled people is restricted only by the bounds of technical progress and discovery; where they have the fundamental right to participate in industry and society according to ability; where social preventable distress is unknown; and where no one has cause to be ill at ease because of her or his disability. Lord Alf Morris

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Newlife Foundation: 21 Years of Care and Action

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Foreword Twenty One years of care - It’s only just the beginning... I shouldn’t really be writing this, but sadly Lord Alf Morris passed away a few months before publication. However, the words he spoke that commended to the House of Commons the need for legislation to effectively establish and protect the rights of disabled children and adults still inspire today. As CEO of Newlife since its launch in 1991, I am informed every day in my work by my own family’s experience. As mother of three sons, I have seen two of them face completely different but challenging, debilitating and painful childhood disability. So my passion to improve child health and to ensure that children with disabilities and their families are properly supported is a very personal mission. This is Newlife’s Impact Report, covering those 21 years. In this, we report on the numbers that reflect the work of the charity. But at the heart of Newlife we believe that it’s not how much money a charity spends that is the most important measure of success, it is the impact the charity has on the daily lives of children and their families that really matters. In this report we have shared some of the problems and also shown how Newlife has impacted on these issues, helping real babies, children and young people across the UK. A charity is only ever as good as its supporters; the individuals, organisations, companies, volunteers, trusts, MPs and others that make it all happen. Without them, none of this would have been possible, so this report is an opportunity to say thank you. It’s also a moment in time to celebrate past success and look to the future. I am privileged to see on a daily basis, the difference Newlife makes, improving child health, supporting families, providing equipment and campaigning for a better deal. I am also very lucky to work with Newlife staff, dedicated people who see their work turned into positive effect in changing lives.

“

Sheila Brown CEO, Newlife Foundation

Every day in the UK, ordinary children in ordinary families become disabled, and are diagnosed as life limited or terminally ill. Every day Newlife is there to support them and their families.

”

We have had significant success in the past 21 years, but there is much to do in the future and I hope this report will inspire you to support Newlife, and those we serve in the future. Newlife trustees remain dedicated to providing care and support when children and families need it most, while focussing on action to give hope and to effect positive change. If it was your child who was affected, you would naturally want the very best for them. Newlife wants the best for every child and their family and we have proven that, by working together, we really can make it happen.

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Equipment Grants and Loans Equipment Grants and Loans EH.indd 1

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The BIG numbers 5800 £8.5m 5800 disabled children and their families helped through the provision of essential equipment grant and loans.

400

400 children ‘fast tracked’ due to their urgent need. Their equipment was provided within days.

100

100 terminally ill children awarded emergency loan equipment through the Just Can’t Wait service, launched in 2011.

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£8.5 million spent by Newlife on an extensive range of essential equipment for disabled children.

130

130 families benefitted from the loan of sensory and development equipment through the Kit Box loan service, launched in 2012.

Endless The long term benefits of Newlife’s Equipment Services.

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Enabling children’s lives - Equipment grants The Problem:

Prior to 2004, Newlife Nurses were inundated with calls from families who could not get the essential equipment they needed for their disabled children.

The Aim:

To provide a service to fund essential equipment for disabled children across

the UK.

The Impact:

Since 2004, Newlife Foundation has funded over £8 million worth of equipment grants helping more than 5,500 children. Newlife hears stories of children who sleep on mattresses on floors because they do not have the specialist bed they need, are unable to go to school or leave hospital because they do not have the appropriate wheelchair and are unable to communicate with their parents because they cannot get communication aids. Newlife funds this essential equipment to help disabled children whose need is often urgent.

The Problem: The experiences of families showed that disabled children were unable to get the right piece of equipment they needed at the right time. Too often families had to wait as long as one to two years just to get an assessment. Even then, often due to financial constraints, local statutory services were unable to provide the right piece of equipment and families had to ‘make do’ with inappropriate alternatives because of poor budget planning, a lack of a holistic assessment, restrictive criteria and failure to understand the level of need. The recent Care Quality Commission (CQC) report highlights that two thirds of all Primary Care Trusts either, don’t know how long it takes to provide a wheelchair to a child or report that it can take any time between 11 weeks to one year.

The Aim:

To deliver an equipment grants programme to provide the right piece of equipment at the right time.

The Impact:

The Newlife scoring process means that each application is assessed by a qualified nurse against a criteria matrix, resulting in applications being prioritised on the basis of need. This innovative approach means that Newlife ‘need tests’ but never ‘means tests’. This ensures that the child receives the most appropriate piece of equipment, regardless of cost. Newlife has ‘fast tracked’ over 400 applications (since 2005 at a cost of just under £500k) due to urgent need, providing equipment often within days to ensure children can, for example, leave hospital or sleep safely at night.

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Newlife Foundation: 21 Years of Care and Action

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The Problem: Many families struggle to get the equipment they need, with many health and care authorities restricting provision. In some cases other charities can help, but often only offer a limited range of equipment, or focus on specific conditions.

The Aim: To provide a full range of equipment that meets the specific needs of each individual disabled child and their family. The Impact: Newlife funding for essential equipment. Wheelchairs/Mobility/Support Special Pushchair/Buggy

......................................................................

£3,103,737.20

...................................................................................................................

£694,250.32

Special Cot/Bed

. ............................................................................................................................................................

£1,324,807.80

Special Car Seat

. ............................................................................................................................................................

£1,085,980.90

Special Seating Support

. ......................................................................................................................

£523,876.17

Play/Sensory/Development/Therapeutic £1,000,346.50 ..........

Shed/Storage/Exterior Household Goods Bedding/Clothing Hoists/Handling

. .......................................................................................................................................

. .................................................................................................................................................................

......................................................................................................................................................................

Safety/Behavioural/Toileting Other

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. ...........................................................................................

£75,625.80 £17,473.32 £48,275.26

£159,473.20 £528,397.80

............................................................................................................................................................................................................................................

£68,471.77

Newlife provides a comprehensive range of equipment, within 11 key areas, providing specifications of equipment including 'off the shelf', bespoke and highly tailored equipment, to ensure that each child’s specific clinical, postural and care needs are met (see pie chart). Newlife works closely with professionals such as Occupational Therapists and Physiotherapists who support the applications made by families. Newlife also works with leading equipment specialists to ensure that the child is provided with the appropriate piece of equipment which addresses both short and long term needs.

The Problem:

Many families feel that they cannot rely on statutory services to provide the equipment their child needs in a timely way. The recent CQC report states “We found a significant disparity between the experiences of disabled children and their families which were overwhelmingly negative compared to the data supplied by Primary Care Trusts”.

The Aim: To ensure that the equipment grant process is personal, supportive, thorough, transparent, understandable and that the time from receipt of the application to grant award, reflects the needs of the child and their family, with no unnecessary delays. The Impact: Feedback from families shows that 95 per cent are happy with the process and the equipment. Newlife ensures that children get the equipment they need when they need it, fast-tracking applications when we need to. This means that, on occasions, the application, interview and award process can be streamlined into days rather than the months and years families have grown to expect from statutory provision. Newlife also works closely with equipment suppliers and manufacturers to ensure that the ordering and delivering process is as streamlined as possible and does not require the family to monitor the administration process, chasing up orders, payment and deliveries.

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Mathew was desperate to play with school friends and have his own independence, Newlife provided the powered wheelchair that changed his life.

More independence for Mathew Mathew’s story by his dad, Ray...

What nurse Karen says...

Why Newlife came to the rescue...

Mathew from Eastbourne in East Sussex was diagnosed with Cerebral Palsy and Epilepsy which, despite taking various medication, remained uncontrolled. Mathew became dependent on his carers for all activities. “Mathew uses a manual model but he can’t self-propel so he is entirely dependent on someone else pushing him around.”

Powered wheelchairs provide children with independent mobility. This results in increased confidence, allowing improved socialisation. These wheelchairs give important postural support helping to prevent spinal conditions from deteriorating. A tilt-in-space function facilitates rest and enables children to change position. Other chairs have a sit-to-stand function facilitating interaction at any level. Standing improves bone density, circulation and organ function reducing the risk of spinal deformities. Despite this, children have to meet eligibility criteria to be provided with a powered wheelchair via

• Mathew’s family applied to their local authority for a powered wheelchair base but their application was turned down. • Ray, Mathew’s father, told us the application was turned down on the basis that Mathew could have a seizure and drive the powered chair into the nearby lake. • Newlife was informed by a professional Occupational Therapist that Mathew’s skills were improving and that a power wheelbase would enable him to further develop his skills with the support of his family and school, who were all keen to support him.

Local Wheelchair Services.

Fact!

Almost all Primary Care Trusts limit the numbers of powered wheelchairs they provide by, for example, imposing criteria preventing children with epilepsy and those under ten from obtaining a powered wheelchair. Vouchers may be offered worth a few hundred pounds only to children who need far more costly wheelchairs. Newlife knows of children who have been unable to go to school because they cannot access the site without a

Many families face similar problems when it comes to applying for wheelchairs from statutory services. Blanket policies such as not funding wheelchairs if the child can walk a few steps, or not funding more than one piece of equipment per year, prevent disabled children from getting the vital wheelchairs that they need.

powered wheelchair.

Since 2004 Newlife has spent £3.7 million on wheelchairs, pushchairs and other mobility equipment helping 1691 children.

Mathew was given access to a powered wheelchair at school, which gave him complete independence to experience playtimes and explore new environments for the first time. He required a powered wheelchair base which, used in conjunction with his seating unit, would give Mathew the independence he desperately craved. “Mathew got on really well with the powered wheelchair so we applied to the local authority with the help of Mathew’s school. Our application was turned down on the grounds that we live near a lake and he was in danger of having a seizure and driving a powered chair into the water and drowning!”

Across the UK...

Newlife Foundation: 21 Years of Care and Action

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How Newlife helped Mathew: • Need: Newlife provided Mathew with a powered wheelchair which gave him the independence he desperately craved. • Speed: “With some charities there is a waiting list of up to two years to get a wheelchair and yet at Newlife, within four weeks of applying, we were told Mathew would get his wheelchair” . • Impact: The wheelchair base has had a significant impact on Mathew ’s life, enabling him to interact with his friends in the playground. “He has the opportunity for some independence. He can now decide what he wants to look at and where to go and not have to rely on someone else to choose for him”. • Award: Mathew has recently been presented with a prestigious award of achievement at his school for learning to drive his wheelchair. • Award: Mathew loves his new wheelchair and thinks it’s the bee’s knees. “When I am driving in my power chair, I feel happy and good.”

“When I am driving in my power chair, I feel happy and good.” - Mathew

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Diane faced her worst fear one night as she was stuck in rush hour traffic. She realised that her son was having a seizure as he sat behind her. He collapsed forward and started choking. Jamie hadn’t been given the correct car seat and the necessary supports which his disability needed and it had put his life at risk.

A safe journey for Jamie Jamie’s story by his mum, Diane...

What nurse Karen says...

Why Newlife came to the rescue...

Jamie has Global Development Delay, visual impairments and unstable Epilepsy. He often has five or six seizures a day, losing all muscle control. Jamie urgently needed a specialist car seat to support him safely when travelling in the car. Diane tried to get statutory services to assist, but neither they nor her local MP could help her. She was told she would have to fund it herself. As a single mother and full time carer of her three children, two of whom have disabilities, this was not an option as it cost £649 - up to ten times the price of a standard car seat.

Children with disabilities or life-limiting conditions often need highly specialist car seats. A standard car seat can cost under £100 on the High Street, but a special car seat costs up to £2,000. Newlife funds car seats, most between £700 - £1,200. Few families can find that sort of money quickly these days. Why should the safety of disabled children be less important than that of their peers? We hear about children being transported in car seats where they have to be propped up with pillows or left slumped over the side of a seat. Travelling to school, hospital and for social activities is important and Newlife Equipment Grants ensure children are safe.

• The local statutory services told Jamie’s mum they could not fund specialist car seats, so she would have to fund the car seat herself. • The local Member of Parliament tried to help, but there was nothing he could do. • In tears, when Jamie was in hospital, Diane, tried the MP again and was still told nothing could be done.

On the night that Jamie collapsed, Diane stopped the car and tried to release him from his standard car seat. He was slumped forward and she had a terrible struggle to release the harness while he was choking and fitting. Eventually she freed him and called the ambulance. Jamie was then taken to hospital and admitted. A special car seat would have had a secure but fast release mechanism and saved Jamie and his mum the horror of this life threatening incident.

Fact! Few, if any, statutory services across the UK (Primary Care Trusts or Local Authorities), will fund specialist car seats. Families can apply for an exemption certificate for very severely disabled children, but what parent wants their child unprotected when travelling?

Why? Statutory services generally don’t supply car seats because they are not seen as ‘essential equipment’, despite the law on children needing to be secure when travelling.

Across the UK... Since 2004 Newlife has provided 1463 car seats at a cost of £1.1 million. 10

Newlife Foundation: 21 Years of Care and Action

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How Newlife helped Jamie: • Need: Jamie’s mum Diane applied to Newlife for the car seat in 2006 because of his urgent need - he had choked when having a seizure. • Cost: The car seat was going to cost his devoted mum £649, more than ten times the cost of a standard car seat. • Urgency: Jamie received his car seat from Newlife just six days after the grant was approved, as our nurses assessed he was ‘at risk’, so his equipment was ‘fasttracked’. • Impact: The car seat had an immediate impact. “It gave me the freedom to be able to take all three children where they needed to go. Jamie’s grandfather was also no longer scared to take his grandchildren out in his car. The car seat had an impact on the whole extended family,” said Diane. • Happiness: Jamie loves his car seat. “He thinks he’s a real cool dude, like a racing driver.” • Safe long-term: Five years later - Jamie is still safe in his car seat. Diane tells us it will last another three years, giving the whole family peace of mind that Jamie is safe.

“It gave me the freedom to be able to take all three children where they needed to go.” - Jamie’s mum

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Unable to concentrate, unable to learn, Oliver could not cope in a classroom environment until Newlife came to the rescue.

A chance to learn for Oliver

Oliver’s story by his mum, Alexandra...

What nurse Karen says...

Fact!

Oliver, aged ten, has an auditory and temporal processing disorder. He had a poor attention span at school, which was directly linked to his hearing difficulties. “In a classroom environment he would just switch off and stare out of the window because he couldn’t cope with incidental noises – like chairs shuffling or the caretaker mowing the lawn.” What Oliver needed was a special hearing system. This is a piece of equipment that reduces the background noise in the classroom that he was struggling to block out. Despite doing all she could, Alexandra could not secure the funding she needed for the equipment, each approach meeting a dead end. The Local Authority’s response was that Oliver did not meet the criteria for funding because he had no formal diagnosis (despite recommendations from a leading consultant stressing the benefits of the hearing system) and her local MP was unable to overturn the decision made by statutory services.

The human ear is capable of filtering out many unwanted sounds but a hearing aid is unable to do this. Without the radio aids, hearing aid users can find background noise levels too loud and can also get feedback and interference. Individuals can be excluded because they are missing conversations and this can seriously affect

A lack of provision of sensory equipment means that individuals affected by sensory disorders, behavioural issues and learning difficulties are missing the opportunity to develop different skills. These aids enhance the senses and promote calmness and relaxation which improves well-being. Sensory equipment can be instrumental in developing communication, helping children to learn ‘cause and effect’ which is imperative for children who will then go on to use mobility equipment.

their confidence and ability to integrate into education.

Why Newlife came to the rescue... Alexandra tried everything to get the piece of equipment that Oliver needed including writing to her council and MP: • Her County Council recognised that Oliver had major difficulties with his hearing but was unable to help as Oliver had no formal diagnosis. • Her MP could not reverse the decision made by statutory services and so pointed her towards charity funding.

Across the UK... Newlife has awarded just under 1012 grants for sensory and therapeutic equipment at a cost of just under £1 million.

Newlife Foundation: 21 Years of Care and Action

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How Newlife helped Oliver: • Need: To help him listen and concentrate at school, Oliver needed a hearing system that reduced background noise. Statutory services could not help because Oliver did not meet the criteria for funding because he had no formal diagnosis. • Helped: Within four months, the application had been submitted to Newlife, approved, funding found and the equipment ordered and delivered. • Impact: Oliver is now able to hear the teacher and concentrate more easily. This has improved his speech, self confidence and learning ability. “Oliver’s teachers have noticed a huge difference in his attention levels and in him taking an active part in lessons which before he didn’t do.” • Happiness: Oliver loves his new hearing aid. “As soon as he got it he could see the world was a different place.”

“As soon as he got it he could see the world was a different place.” - Oliver’s mum

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In a chair that no longer fitted her, Charlotte needed a manual wheelchair to meet her postural needs but also give her the freedom of independence. Yet when Christine, Charlotte’s mother, applied to the NHS in 2010 for the chair, she was refused because a prior voucher awarded in 2007 had not ‘expired’.

Life on the move for Charlotte Charlotte’s story by her mum, Christine...

What nurse Karen says...

Why Newlife came to the rescue...

Charlotte, at just 12 weeks of age, was diagnosed with a neuroblastoma or tumour which was located on her spine. The tumour was inoperable and as a result she had to have chemotherapy which damaged her spinal canal, leaving her paraplegic and in need of a wheelchair.

For children like Charlotte, a manual wheelchair is a basic need. Having the right wheelchair means that they can get around independently. All too often, wheelchairs given out by the NHS are too heavy to be used effectively, or are simply not up to scratch and fail to meet the user’s needs. The result is that they actually prevent people from getting on with their lives. The right wheelchair may be more expensive, but it can prevent re-admission into hospital due to complications. For example, poor posture or long term shoulder damage can occur as a result of the provision of an inappropriate chair. If someone is denied their independence because of an inappropriate or inadequate wheelchair then they are unlikely to take an active role in society and their dependence on care services and benefits is likely to increase.

• Statutory services could not provide a lightweight wheelchair for Charlotte in 2007, offering only £340 towards the appropriate chair which cost £2,185. • Once Charlotte had outgrown this chair three years later, statutory services refused to provide the subsequent chair because her previous voucher had not yet expired, leaving Charlotte in a wheelchair that no longer fitted her.

In 2007 Charlotte had outgrown her wheelchair. The family applied to statutory services but the type of wheelchair they could supply was much heavier than her previous one. They agreed to fund a voucher for £340 towards the suitable lightweight chair which cost in total £2,185. Newlife stepped in and funded the remaining amount for the required chair. In 2010 Charlotte had outgrown this chair and a new one was required, along with specialist cushioning which would prevent her spinal condition from worsening further and prevent possible pelvic and hip problems. Christine, Charlotte’s mother, applied to Local Wheelchair Services for a new wheelchair but the application was turned down because the voucher provided for the previous chair had not yet expired (NHS vouchers expire after five years).

Fact! Statutory service provision of wheelchairs aims to meet the child’s basic mobility needs not the individual requirements of the child. Vouchers are often used to offset the cost, when charities fund wheelchairs that meet the child’s requirements in full.

Across the UK... Since 2004 Newlife has provided 902 wheelchairs and accessories at a cost of £3.1 million.

Newlife Foundation: 21 Years of Care and Action

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How Newlife helped Charlotte: • Need: Charlotte needed a new wheelchair t o p re ve n t h e r s p i n a l c o n d i t i o n from worsening and to promote her independence. • Helped: Christine, Charlotte’s mother, applied to Newlife when statutory services refused to help. The chair was with Charlotte within three months. • Impact: Charlotte’s new chair had an immediate impact: “ The wheelchair has made a big difference to my independence; no-one can push me as there are no handles!” • Practical: “The chair has a low back so that Charlotte can put her rucksack on. It’s very light and therefore easy to put in the car,” said Christine. • Attention: “My wheels are brilliant; they are in a fab colour, iridescent orange. The trouble is my friends keep asking me if they can have a go!” said Charlotte. • Athlete: Each year Charlotte raises funds for Newlife by taking part in the London mini-marathon which she has won the last two years. “I hope to work hard and race in the Paralympics when I’m older. Please say thank you to everyone who donates to Newlife for helping me and lots of other disabled children.”

“My wheels are brilliant... The trouble is my friends keep asking me if they can have a go.” - Charlotte

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With unpredictable behaviour and no sense of danger, Emily’s safety was a constant concern for her parents. They supervised Emily 24 hours a day often foregoing sleep in the process. The family required some much needed support and found it through Newlife.

A ‘safe space’ for Emily Emily’s story by her mum, Sally...

What nurse Karen says...

Fact!

Emily has been diagnosed with Cri-du-chat Syndrome which causes development delay, communication difficulties, severe learning problems and challenging behaviour. She also has a diagnosis of Autistic Spectrum Disorder (ASD).

Safespaces are life-saving pieces of equipment for children like Emily who have behavioural difficulties or conditions such as Autism. Without a Safespace, there is the constant worry that children are at risk of hurting themselves or other members of the family. A Safespace can provide much needed respite and allow members of the family to sleep safe in the knowledge that their child is out of danger, even if they remain awake for most of

The provision of Safespaces can be the difference between children being able to stay at home with their families instead of them having to go into residential care and yet Newlife has found that many statutory services do not categorise Safespaces as essential pieces of equipment.

Home was a challenging environment for Emily’s parents as they tried to keep her and her younger brother safe. They used bolts on doors, tall gates to prevent access to unsafe environments and had no ornaments on show in the house. Emily, who shared a bedroom with her younger brother, didn’t sleep well and disturbed all of the family. This started to affect the behaviour of her younger brother, who also suffered with ASD which has exacerbated by tiredness. “Emily’s sleep patterns were disturbed. She had a tendency to wake early, disrupting the rest of the household. This affected everyone’s ability to sleep.” Emily required a Safespace. This is a specifically designed room within a room made from industrial strength PVC and a steel padded frame. Safespaces create light, pleasant, safe yet robust environments for living and sleeping where children cannot harm themselves or others.

the night.

Across the UK... Newlife has funded 83 Safespaces since 2004 at a cost of £340,000.

Why Newlife came to the rescue... • Emily’s family were eligible to apply for a Safespace via the Disabled Facilities Grant but Emily’s Occupational Therapist informed Newlife that this would have been a lengthy process and the wait would have been detrimental to the wellbeing of Emily and her brother. • Newlife was informed that at that point in time, provision of the Safespace would alleviate many of the behavioural problems and help with future management of them. It would also give the family much needed respite.

Newlife Foundation: 21 Years of Care and Action

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How Newlife helped Emily: • Need: Emily’s parents needed a safe environment for Emily when her behaviour became challenging, especially during the night. • Helped: Newlife received Emily ’s application and approved it within six weeks. The entire process from receipt of one application through to delivery of equipment took just three months. • Impact: The Safespace had an immediate impact on the whole family and gave them the peace of mind that Emily was safe when in her room. • Happiness: Emily also really enjoys being in her new environment as Sally explains: “Being in the Safespace is like being in a tent and Emily likes that feeling. She knows that she is safe and she finds it a comfortable and calming environment.”

“Being in the Safespace is like being in a tent and Emily likes that feeling.” - Emily’s mum

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When an urgent application like Paul’s arrives, Newlife can assess it, sign it off on the same day and provide the equipment as soon as the manufacturer can supply it. Newlife ensures that assessments are based on the real needs of the child.

The right posture for Paul Paul’s story by his mum, Kerry...

What nurse Karen says...

Why Newlife came to the rescue...

Paul was born with the rare genetic condition, SjogrenLarsson Syndrome (SLS), caused by the low activity of a particular enzyme. He was confined to a wheelchair and in 2007 his physical condition had deteriorated to such an extent as a result of constantly sitting down, that he required surgery to his right hip.

Corrective surgery, long term complications and pain, increased cost of care, a need for hospitalisation and a comprised quality of life: these are just some of the problems faced by children who have incorrect seating or no provision at all. Sitting is a dynamic, not static state. An able-bodied person will usually sit for one to two hours at a time but change position during this time. A disabled person may sit for three to ten hours a day without the ability to reposition themselves. A consistent 24 hour programme of postural care management is vital for children with physical disabilities in order to limit longerterm health risks and to promote the child’s comfort and

• Statutory services recognised that the speedy provision of this new seating was critical post-operatively, to prevent Paul’s posture from deteriorating further. • However, statutory funding was limited and Newlife was told that the family faced a long delay before being provided with the urgently required seat.

After the surgery, Paul urgently required a seating system that could be fitted to his wheelchair to maintain the correct posture. The provision of the seating system was critical, post-operatively, to prevent his condition from deteriorating further. Paul’s family discovered Newlife through the internet. Kerry, Paul’s mother, was immediately impressed with Newlife’s grant process: “The application process was really easy. It started with a phone call and then we were sent a form which was really easy to complete.”

Across the UK... Newlife provides a variety of seating equipment tailored to individual needs. Newlife has funded 419 pieces of such equipment since 2004 at a cost of £523,000.

active participation in daily activities.

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How Newlife helped Paul: • Need: Kerry, Paul’s mother, applied to Newlife because his need was urgent. Having just had corrective surgery, a specialist seat was needed to maintain correct posture and prevent further deterioration. • Urgenc y : Newlife approved Paul’s application after two days and the equipment was supplied within four weeks. • Prevention: Correct posture was so important after surgery and meant that Paul avoided further operations for another three years. “He eventually had surgery at the end of 2010: being older, he was more able to cope with the surgery and its effects than when he was younger”, said Kerry. • Follow-up: Newlife contacted the family a year later and discovered that Paul needed a new manual wheelchair, crucial in allowing him to change the weight distribution on his back. “Newlife is brilliant… A year after we had the seating system we received a letter from the charity asking us how we were and whether there was anything else Newlife could do for us,” said Kerry. • Impact: The provision of the wheelchair gave Paul increased independence. “When you see your child able to propel themselves, it is great. It was a big achievement for Paul. He is thrilled to have the wheelchair.”

“He eventually had surgery... being older, he was more able to cope with it than when he was younger” - Paul’s mum

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Most of us take for granted our regular ‘eight hours’ of sleep, but for 12–year-old Sean and his family night times were much more challenging.

A good night’s sleep for Sean Sean’s story by his mum, Suzanne...

What nurse Karen says...

Fact!

Sean was diagnosed with Cerebral Palsy, presenting with a particular type called Spastic Quadriplegia, as a result of being born prematurely after 29 weeks of pregnancy. Sean had a number of operations which where traumatic and left him in plaster casts for several weeks each time. After the casts were removed, Sean had difficulties sleeping which affected the whole family. “Life was difficult. Sean had problems sleeping through so we all had disturbed nights.”

Specialist beds and cots are often not considered as ‘essential’ equipment by statutory services as everybody needs a bed. However, a specialist bed can provide a child with postural support, help prevent deformities, allow tube feeding to occur overnight or tilt to prevent a child

Specialist beds are regularly refused by statutory services often due to disputes between social and health services as to who is responsible for provision. Yet children who are already vulnerable face an increased risk when in an unsuitable bed. One example is of a child who fell out of an inappropriate bed, fractured his skull and broke his teeth while on a waiting list for specialist provision.

Sean’s condition was also affected by his night time sleeping positions. “Sean was sleeping curled up, causing his muscles to tighten. This is bad for Sean’s posture and reduces his ability to sleep”. Each morning it would take up to an hour to ease Sean’s muscles and straighten his legs, which was time-consuming and extremely painful for him. Sean faced long-term deterioration in his postural condition and an increased risk of malformation and contracture. To prevent this from happening he required a sleep system to keep him in the correct position while sleeping.

from choking.

Why Newlife came to the rescue... • When Sean’s family contacted statutory services, they were told that there was no funding for the sleep system as it was not classed as essential equipment. • Newlife was also told that there had been major problems in keeping Sean in a good position at night without the sleep system. Sean’s physiotherapist said that the sleep system had been tried and proved to be highly successful in keeping Sean in an appropriate position.

Across the UK... Newlife has funded 572 cots and beds since 2004 at a total of £1.3 million.

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How Newlife helped Sean: • Need: Sean faced long-term deterioration of his condition because he wasn’t sleeping in a good position. This also left him in a great deal of pain each morning when his muscles had to be straightened out. • Helped: After receiving Sean’s application, Newlife authorised the grant and the equipment was delivered within six weeks. • Impact: The sleep system had an immediate impact. “Getting the sleep system has had a positive effect on all the family; we can all now get some sleep. Even Sean’s school have noticed a difference.” • Happiness: Sean is happy in his sleep system, as Suzanne confirms: “Sean loves it because he sleeps for longer periods of time and knows that he won’t have the same problems when he wakes up. He goes to his Gran’s about once a month for a sleepover and the system goes with him. It’s as automatic as packing a toothbrush!” • Sleeping safely long term: Newlife has since provided Sean with an adult-sized system. This will reduce the risk of further problems with his hips, leg and pelvis and reduce the need for further surgery.

“He sleeps for longer periods of time and knows he won’t have the same problems when he wakes up.” - Sean’s mum

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“

Tragically, some families tell Newlife nurses that equipment has arrived from statutory services after their child has died.

Equipment Loans - 'Just Can’t Wait' The Problem:

Often, even terminally ill children cannot get the equipment they urgently need. Tragically, some families tell Newlife nurses that equipment from statutory services arrives after their child has died. For example, the delivery of a sling for a hoist (three years after ordering) arrived on the day of the child’s funeral. Due to long waits for assessment, families cannot get urgently needed equipment in time for their life-limited children. A shortage of equipment within statutory services leads to the development of policies designed to ration provision and fails to provide a service expected of a care service. For example, one PCT only provides specialist beds under a policy of “rolling provision to the moving population”. The ‘moving population’ are terminally ill children at very end of life care and ‘rolling provision’ means a ‘turnaround’ of six weeks for delivery, use and collection of the bed.

The Aim:

To provide a priority equipment loan scheme for terminally ill children whereby items are delivered to the family within 72 hours of the initial application and are used as often and for as long as needed.

The Impact:

Newlife has put in place the ‘Just Can’t Wait’ scheme for children who, simply put, just cannot wait. Newlife has a suite of equipment available for families of terminally ill children. This ensures that, once the application is made by a family or by a professional on their behalf, the piece of equipment is delivered within 72 hours.

”

Specialist chairs and pushchairs have enabled families to enjoy priceless time together on days out and on holiday. For example, one caring professional wrote to tell us that, thanks to the Just Can’t Wait programme, one family were able to take their son on a last holiday to Lapland to see Santa - a priceless, positive and lasting memory for the family.

When the equipment is no longer needed, it is sensitively and speedily collected so that it no longer acts as an unwanted reminder of the child’s last days. The equipment is then returned to the specialist supplier who clinically cleans and refurbishes it before making it available for loan for a further family who are in urgent need. Since this project was launched in 2011, Newlife has helped over 80 families, providing them with a range of equipment. Specialist beds enable terminally ill children to sleep at night, free of pain, often preventing the need for them to go into a hospice against the child and family’s wishes. Catherine

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Equipment Loans - Kit Boxes The Problem:

Families want to be able to provide appropriate toys, sensory and development aids for their children. Such equipment can facilitate specific development for children who have sensory difficulties. The problem is that this equipment is costly. Individual items can cost several hundreds of pounds. Parents and carers also simply do not know which toys the child is going to like before they have tried it.

The Aim:

To provide a ‘Kit Box’ loan scheme for families of disabled children. Families can apply to borrow a Kit Box which contains equipment appropriate to their child’s needs (e.g. visual, auditory, kinaesthetic, etc).

The Impact:

Since this project launched in 2012, Newlife has helped over 130 families through the provision of Kit Boxes. This scheme has been extremely popular, because families are able to ‘try out’ appropriate aids/toys with their children to see which ones they like in the relevant Kit Box, which they can borrow for 12 weeks.

Each box contains (on average) £400 of equipment but if a child particularly enjoys playing with one or two items then families can purchase these once the box has been returned. Ultimately, families have the opportunity to try before they buy, underpinning their child’s development.

“

One family commented:

Thank you so much for lending us the sensory box. It has been wonderful for our family in so many ways. It has revolutionised play as the box gave us the chance to try out a range of new toys and discover what he responded to.

”

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Maia’s story - by Maia’s mother Michelle Maia was a very special little girl. Tragically she lived for just nine months. Her family knew she wouldn’t always be there so they celebrated her birthday every month she lived. As they were caring for Maia at home, they needed help for her to sleep safely. Newlife provided a vital cot in just 72 hours to enable the sleep-deprived family to enjoy all their waking moments together.

A traumatic birth and a devastating diagnosis Maia was born on 26 August 2011. Despite an uneventful pregnancy, Maia was born prematurely after a traumatic delivery during which she had to be resuscitated twice. The special care unit stabilised her and extensive tests were undertaken. Maia’s parents were told when she was 11 days old that she had Pontocerebellar Hypoplasia (part of her brain was missing/malformed). They were also told that Maia would not live very long. Her mum, Michelle said: “Maia’s condition had a huge impact on our lives, our whole world was turned upside down. It was very difficult to plan to go out because Maia had so much equipment that had to go everywhere with her. It was also so frightening that her condition could change so quickly”.

A care package was put in place and Maia was discharged from hospital at five weeks of age, but she had numerous visits / admissions to hospital in her short life.

Family time together The family enjoyed every second they had together. Maia enjoyed playing in the park, listening to music and especially relaxing and swimming in the pool. Michelle, Maia’s mum, was even able to take her shopping and to the local donkey sanctuary. “We lived every day. When there is so much uncertainty, you have to make the most of it”.

How did Newlife help? One of the problems Maia’s parents encountered was that Maia could only sleep for an hour or two due to the pain she suffered. She needed an appropriate cot so that she was positioned correctly. Newlife stepped in. Through the ‘Just Can’t Wait’ service, available for special children who have life limited conditions, Newlife was able to provide the equipment within just 72 hours.

“The cot looked like a normal baby cot, not one found in a hospital.” It was important for Michelle that Maia’s room remained homely and not like a hospital ward. Michelle felt that she was doing all she could to help her daughter. The cot also ensured that Maia, now correctly positioned, would sleep for hours. This was a huge help for her sleep-deprived family.

Maia - always in our hearts and minds. Maia passed away, peacefully, at home aged nine months. The family asked Newlife to pick up the equipment on the same day. This was done sensitively and professionally with special consideration given to Maia’s parents. As requested, they were not involved in the process to prevent even more distress. Michelle wants to tell Maia’s story so that she can help other families. She says: “Access all the services you can. Don’t worry about asking for help, it is there to improve all of your lives. We lived every day and made the most of every day. Thank you Newlife”.

Newlife Foundation: 21 Years of Care and Action

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â&#x20AC;&#x153;

We lived every day. When there is so much uncertainty, you have to make the most of it. Thank you Newlife.

â&#x20AC;?

Due to the long waits for assessment, families cannot get urgently needed equipment in time for their life-limited children.

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Tom’s story - by his mother Sally Tom was born with a rare condition that caused developmental delays. It was difficult for Sally, his mother, and the rest of the family to know what equipment to buy, that he would enjoy playing with. The Newlife ‘Kit Box’ loan allowed the family to ‘trial’ appropriate equipment with great success.

Tom - born with a rare condition Tom has a diagnosis of Agenesis Corpus Collosum. This is a rare birth defect whereby part or all of a band of white matter within the brain, called the corpus callosum, is missing. As a result he has developmental and cognitive delay. At 35 weeks gestation the condition was identified and his parents were offered a termination due to the extent of brain damage that was found.

What this meant for Tom Tom has low muscle tone, however he is able to sit with support and will try to take steps with assistance from an adult. Tom is able to make some of his needs known and has started to babble. His parents are able to recognise 15 words. Tom is tube fed as he cannot swallow food safely.

What did you apply for and how quickly did you get it? Tom enjoys sensory stimulation and being outside so Sally, Tom’s mum, applied for the loan of a sound / development Kit Box from Newlife. “There didn’t seem to be a long time to wait at all. In fact the bubble tube base (a long thin tube which, when turned on, draws attention due to the ever changing colours) came within two weeks of our enquiry”.

What difference has the Kit Box made? The Kit Box full of equipment had a great impact on the whole family, but especially Tom. “It’s amazing and has revolutionised our lives. These toys were suitable for a wide age range, so my oldest son, who is eight, was able to play with Tom nicely, without squabbles. The sensory blocks were a big hit with the boys”. Sally also noted that the Newlife loan ‘Kit Box’ service enabled the family to see which pieces of equipment Tom enjoyed playing with most.

“We have previously wasted money on equipment that has not been suitable for Tom, but since we’ve had the Kit Box it has meant that we can purchase equipment that we are confident is beneficial to Tom”.

Has the Kit Box helped Tom? The family have immediately noticed improvements in Tom’s behaviour as Sally explains: “It has increased Tom’s turn taking abilities, he doesn’t snatch any more. He has also learnt how to play while involving other people and is less distressed with changes of activity”. In fact, the equipment from the Kit Box was so beneficial that once the box was returned at the end of the 12 week loan, Sally purchased some of the equipment that she knew Tom had enjoyed the most, including some transparent bricks and balls. “Thank you so much for this amazing opportunity. It was fun to be able to play with stimulating and exciting toys as a family and spend relaxed quality time together”.

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â&#x20AC;&#x153;

Thank you so much for this amazing opportunity. It was fun to be able to play with stimulating and exciting toys as a family and spend relaxed quality time together.

â&#x20AC;?

Since this project launched in 2012, Newlife has helped over 130 families through the provision of Kit Boxes.

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Newlife has helped children in 91 of the 96 UK counties

Helping disabled children across the UK This map shows the number of equipment grants and loans provided by Newlife Foundation across the UK.

Map County Aberdeenshire Anglesey Bedfordshire Berkshire Borders Buckinghamshire Caerphilly Cambridgeshire Cardiff Central Cheshire Clwyd Cornwall County Antrim

Total 12 3 94 77 14 88 9 44 2 11 182 63 54 85

Map County Total County Armagh 18 County Down 45 County Fermanagh 19 County Londonderry 26 County Tyrone 24 Cumbria 36 Derbyshire 105 Devon 135 Dorset 56 Dumfries 1 Durham 44 Dyfed 10 East Sussex 43 East Yorkshire 64

Map County Essex Fife Glamorgan Gloucestershire Grampian Gwent Gwynedd Hampshire Herefordshire Hertfordshire Highland Isle of Wight Kent Lancashire

Total 115 25 142 87 12 127 12 222 9 73 8 4 128 191

Map County Leicestershire Lincolnshire London Lothian Manchester Merseyside Norfolk North Yorkshire Northamptonshire Northumberland Nottinghamshire Oxfordshire Powys Shropshire

Total 206 61 350 27 76 165 93 136 73 12 189 76 14 54

Map County Somerset South Yorkshire Staffordshire Strathclyde Suffolk Surrey Tayside Tyne and Wear Warwickshire West Midlands West Sussex West Yorkshire Wiltshire Worcestershire

Overall Total:

Total 76 137 464 100 35 135 6 62 104 524 39 151 40 92

6,016

Newlife Foundation: 21 Years of Care and Action

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Nurse Services Nurse Services LT.indd 1

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The BIG numbers £21 £3m £3 million spent on helping families through the Newlife Nurse Service Helpline and raising awareness through publications and events.

Average cost to Newlife to help a family.

2.5m

2.5 million families helped across the UK through the provision of accurate and timely information, signposting and direction to relevant services and provision of vital equipment grants and loans.

800%

800% increase in the number of people helped through the Newlife Nurse Service between 2007 and 2012. This highlights the increasing importance of the service; families now know who to turn to and who to trust.

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“

Newlife gave us peace of mind to ensure the best treatment for our child. Thank you so much. We can keep our sanity. From the bottom of our hearts, thank you Newlife.

”

Family of a Newlife child

Nurse Services

The Newlife Nurses are the gateway to information, grants and care. They staff a free national Helpline which supports and informs families, whether they have just been told of their child’s disability or need help accessing local services. The Newlife Nurse Helpline is free, confidential and trusted. Nothing is too important or too trivial to discuss with a trusted Newlife Nurse. In addition, Newlife Foundation offers grants for essential equipment. If the statutory Health and Social Care Services cannot help, Newlife Nurses can progress a grant for equipment direct from Newlife funds or they can provide information of grants available nationally from other sources. Pictured is Karen Dobson, Newlife’s Equipment Grant & Nurse Services Manager 32

Newlife Foundation: 21 Years of Care and Action

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All Newlife Nurse Services are confidential and free.

Nurse Services - A free ‘gateway’ to professional advice Someone to talk to...

A quality professional service...

The Problem:

Families need information from sources they can trust, from individuals they know they can speak to in confidence and have professional integrity.

The Aim:

To ensure the set-up of a professional Nurse Service that families can trust and that will provide vital information sensitively and in confidence.

The Impact: • The Nurse Service has provided families with a professional, friendly and sensitive service since its origins in 1993. Since 2004, the service has directly helped over 35,000 people and the number of families helped continues to grow on a year-on-year basis. Newlife Nurses bring a variety of different skills and experiences to the department, each one specialising in a different field and working together in a team that families can trust. • Our nurses report that disabled children and their families are extremely grateful for a service which listens, does not rush people and where no concern is too small. Families can also trust that they will be given vital information and access to essential services so that they are aware of what they are entitled to and how to access this support. This means that Newlife nurses act as a gateway for information that would otherwise have to be sought out by families who do not have the time or experience to obtain the right information they so urgently need.

Families need a high quality, professional service which offers a wide range of support which impacts positively upon the lives of disabled children and their families.

The Aim:

To ensure that families can easily access the high quality, professional range of service and care provided.

The Impact: • The impact that the Nurse Helpline has had on its users is measured through follow-up calls to families who use the nurse and equipment grant service. In over 900 follow-up interviews, 99.5 per cent of those interviewed rated the Nurse Service as 'excellent' or 'good' while 98 per cent of families were happy with the equipment grant service. We regularly receive positive feedback; praise for the professionalism of the services and for the nurses themselves. Service users are confident about speaking to a dedicated professional, without being passed from person to person. • In 2004/05 Newlife helped 1427 people. By 2010/11 this had risen over 450 per cent to more than 8,000 helped during the year. This demonstrates the increasing number of people accessing the nurse service and bears testament to its professionalism.

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Nurse Services - A free ‘gateway’ to professional advice (continued) Changing needs mean adapting services... The Problem: Families need a service that continually reviews their needs and then, when required, works to meet those needs, however complex. The Aim: To constantly be aware of the ever changing needs of Newlife families and adapt services offered, when and where required. The Impact: To ensure that the Nurse Helpline has the maximum impact, Newlife services are continually evolving based on the needs of its stakeholders, disabled children, their families and health professionals. Examples include: • The Equipment Grant Scheme - Newlife nurses received many calls from families informing them of the struggles they faced to get vital equipment such as wheelchairs, pushchairs, beds etc. They put forward a plan for an emergency fund scheme to help the families most in need. This has since grown to a full Equipment Grant Service, open to families of all disabled and terminally ill children. It has awarded over £8 million of grants since 2004. • Extended hours - As a result of feedback from families who contacted the Nurse Helpline, Newlife now operates an extended Nurse Service (until 7pm on a Wednesday) so that individuals who work but require the support, have an opportunity to contact a nurse outside of usual working hours.

• The Just Can’t Wait Scheme - In 2009/10 Newlife identified that approximately 20 per cent of its equipment grant applications were for terminally ill or life limited children. Newlife understands that these children need appropriate equipment to be prioritised to meet their urgent needs, in order to receive hospice care services within the family home, to relieve pain or to improve their quality of life. Through the creation of an equipment loan scheme, ‘Just Can’t Wait’ aims to deliver this vital equipment within 72 hours. • Special Source - In 2003 Newlife conducted research which revealed that 58 per cent of all families were calling the helpline for more details about their condition and 22 per cent stated that they still had to pay to get information (about their child’s condition). Newlife believed that getting the right information at the right time would make an enormous difference to the lives of disabled children and their families and therefore set up the condition information service called ‘Special Source’. This is a free service that provides up-to-date information on inborn conditions for families of children born with birth defects.

Newlife Foundation: 21 Years of Care and Action

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“

Thank you so much for providing the stair climber for Mara - it makes it so much easier to get Mara up and downstairs safely and with dignity!

A holistic approach... The Problem: Families need a joined-up holistic service that understands about all of the issues that relate to childhood disability.

The Aim: To work in partnership with organisations across the sectors, to ensure that families obtain the information they require. The Impact: Since the inception of the Nurse Helpline, it has worked in conjunction with a wide range of bodies to ensure that Newlife families get a holistic service that is well-informed and can provide all the information they need. Examples of such collaboration include: • Professional services within the NHS and local authorities - Newlife nurses have found that services offered to families vary from location to location. Once the nurses receive a call from a family who may need access to such services, they will research what is available in their area. This ensures that all families become ‘plugged in’ to their local services. The network of contacts developed with statutory services across the UK means that many professionals will now refer their families to our services, enabling the charity to continue to help more people year on year. We also know that dedicated professionals such as Occupational Therapists and Physiotherapists use the service as a signpost to locate funding for vital equipment when statutory service funding for a child cannot be secured.

Mara’s mother

”

• Support Groups - Families who contact the Nurse Service requiring information about certain conditions are also made aware of support groups that exist to help individuals suffering from specific conditions. Newlife nurses also inform the families of the services that the different support groups offer. • NHS Direct - Whenever a public health issue has occurred, Newlife nurses liaise with NHS Direct so that up to date information can be supplied to families who may be affected. • National Drugs Helpline - Newlife nurses confidentially contact the national teratology service on behalf of its families so that they can inform expectant mothers of the risks of taking drugs that are either prescribed or taken for recreational purposes.

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Medical Research Research 4 LT.indd 1

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The BIG numbers 220 ÂŁ15m ÂŁ15 million Newlife invested in child health medical research.

70 young doctors directly supported through investment in research training, leading to

220 grants funded for pioneering research.

The number of leading institutions where Newlife has funded medical research projects

improved child care and research.

50 genes identified, through Newlife research, aiding diagnosis and treatment.

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Genes discovered (as a result of direct / indirect research funding by Newlife) 1. X linked mental retardation 2. Noonan Syndrome 1 3. Noonan Syndrome 2 4. X linked Cleft Palate 5. Troyer Syndrome 6. Cleft Palate 7. Otodental dysplasia 8. Treacher Collins Syndrome 9. Weaver Syndrome 10. Lymphoedema Distichiasis 11. Di George Syndrome 12. 3M Syndrome 13. Hereditary Spastic Paraplegia (HSP17) 14. Infantile Epilepsy 15. Optic Atrophy 16. Robinow Syndrome 17. Nail Patella Syndrome 18. Bardet Biedl Syndrome 19. Bardet Biedl Syndrome 2 20. Meckel Gruber Syndrome 21. Joubert Syndrome 22. Micro Syndrome 23. Aicardi-Goutieres 1 24. Aicardi-Goutieres 2 25. Aicardi-Goutieres 3

26. Aicardi-Goutieres 4 27. Harlequin Ichthyosis 28. Noonan Syndrome 3 29. Costello Syndrome 30. Cohen Syndrome 31. Brachydactyly type B 32. CHARGE association 33. Lymphoedema myclodysplasia 34. Hennekam Syndrome 35. Spondylothoracic dysplasia 36. Waardenburg 1 37. Rayne Syndrome 38. Mast Syndrome 39. Spastic Paraplegia 40. Milroy Syndrome 41. Sexual differentiation 42. Neuropathy 43. Angelman-like Syndrome 44. Nephronophthisis 45. Primary Ciliary Dyskinesia 1 46. Primary Ciliary Dyskinesia 2 47. Short rib polydactyly 48. Carpenter Syndrome 49. Martsolf Syndrome 50. Jeune Syndrome 2

23 3

30 20 21

33 41 15 44 8

Chr.

Newlife Foundation: 21 Years of Care and Action

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â&#x20AC;&#x153;

In the field of congenital anomalies Newlife has a significant impact on research through funded projects. As one of the very few charities funding work in this area the organisation has the potential to make a major difference to children and their parents.

â&#x20AC;? Chromosome map

Dr. Marian Knight, Senior Clinical Research Fellow, National Perinatal Epidemiology Unit, University of Oxford

This is a chromosome map. Chromosomes are the building blocks of life. Within each chromosome, the number shown alongside the mark indicates the gene that has been identified as being relevant to conditions thanks to research investment by Newlife. In many cases, this has aided diagnosis, understanding, prevention and/or treatment. 28

7 13 18 25

50 26 48

10 39

43 1

Chr.

Chr

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“

Nature is nowhere accustomed more openly to display her secret mysteries than in cases where she shows tracings of her workings apart from the beaten paths; nor is there any better way to advance the proper practice of medicine than to give our minds to the discovery of the usual law of nature, by careful investigation of cases of rarer forms of disease. Quote By William Harvey 1680 - Nature’s Experiment

”

Newlife Foundation: 21 Years of Care and Action

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‘Rare syndromes are common’ Although many inherited malformation syndromes are very rare, together they are common across a wide population. They are often the key with which we can unlock some of the fundamental processes of human development.

Following this, similar discoveries were made with adult polycystic kidney disease which is the environmentinherited cause of renal failure. The next step is to understand this cell biology further so that, hopefully, preventive treatments may be found.

One example of this is the work we initially funded with Professor Phil Beales at Great Ormond Street Hospital. Phil started by undertaking clinical genetic studies of a rare syndrome called Bardet-Biedl Syndrome which causes blindness (through retinitis pigementosa), mental handicap, the development of extra fingers and retinal failure with kidney cysts.

Another example has come from gene mapping studies within the Amish community in Ohio. This isolated population has a unique family structure which has allowed many recessive disorders to be identified by Andrew Crosby. In one family, severe fits started to affect children from birth and they did not respond to

He was successful in finding the first gene responsible for this in 2005. However, he also realised and proved that - unexpectedly - the syndrome was caused due to disruption of the ciliary proteins. Prior to this the cilia had been seen only as the ‘hairs’ on the cells that cleared mucus from the airways in the lungs or powered the tail of the sperm. However, through this research, it was realised that the cilia have an important role in embryonic development even in non-mobile cells. It was therefore recognised that disruptors of cilia can cause the kidney cysts in Bardet Biedl Syndrome.

Research 4 LT.indd 6

conventional anticonvulsants. Genetic studies revealed a defect in a new metabolic patterning of ganglioside synthesis which is the foundation for building up the fatty insulation and nerve cells. Further collaboration with the Department of Pharmacology at Oxford University has been exploring new approaches for treatment.

“

My impression is that Newlife, like several other focussed charitable agencies, funds work with a clear aim to understand congenital disorders and to aid management, care and support. This means that the community funded by Newlife ‘keep their eyes on the ball’ as it were. This is helped by the restriction on funding to £100-120,000; the projects must be focussed and achievable. In many cases they may generate preliminary data to facilitate subsequent funding bids to bigger agencies - though at present all funding bids are pretty challenging. I think the focus of Newlife is well defined and variable (or perhaps a better word is flexible). I suspect that the impact of Newlife (in terms of other measurable outputs like research papers, and unquantifiable benefits like children’s wellbeing) is higher per £ spent than for many other more ‘glamorous’ funders. Dr. Deborah Mackay

”

27/03/2013 21:00

Unlocking doors to improving child health - Real Research Moving forward...

A good business head...

The Problem: Very little funding was available for clinical genetics research looking at rare medical conditions that often have fatal results.

The Problem: As a small charity, getting research started was difficult. Newlife had limited funds to influence the direction of medical research.

The Aim: To put in place a research funding programme which looks at the causation, prevention and treatment of birth defects, by funding pioneering research at institutions across the United Kingdom.

The Aim: Newlife was able to facilitate exciting opportunities to leverage other funding which could be used to fund medical research.

The Impact:

• The ‘business-like’ approach of the charity enabled Newlife to raise enough funds to award its first medical research grants.

• Newlife initiated the grouping of all conditions under the umbrella of ‘birth defects’ as all of those conditions occur in-utero (before birth). This made research which focussed on commonality of conditions both possible and effective. • Newlife has funded just under £13 million of research at 59 leading institutions across the United Kingdom. The unique focus of Newlife’s interest has provided researchers with opportunities to study genetic diseases which often lead to a significant impact on the lives of disabled children and their families. Such focus is rare among other funding bodies or charities. This means that Newlife occupies a ‘critical niche’ within the UK research community. • Newlife has funded over 200 research projects which have identified genes responsible for particular conditions, allowed scientists to develop diagnostic tests for them, helped put management strategies in place to alleviate suffering for those children with such conditions and in some cases even contributed towards research that has discovered and put in place treatments.

Newlife Foundation: 21 Years of Care and Action

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The Impact:

“

The unique focus of Newlife’s research is a valuable asset to funding research in rare medical conditions that may be overlooked by mainstream funding.

”

Dr. Sandra Shelbefine

27/03/2013 21:00

“

For a researcher such as myself, Newlife provides a lifeline in terms of funding rare disease genetics and functional research that is not seen as ‘relevant’ in the eyes of larger funding bodies. It is this focus and interest, and - more importantly - understanding of the relevance of rare disease research by Newlife, that sits at the heart of its success.

”

Professor Philip Beales, Professor of Medical and Molecular Genetics, Honorary Consultant in Clinical Genetics

Getting things moving...

Making research relevant...

The Problem: Many researchers required ‘pump prime’ funding of relatively small amounts to test a theory out before securing a full research grant.

The Problem: For many conditions, breakthroughs were needed to identify the gene(s), whether duplicated or deleted, that were responsible for causing birth defects.

The Aim:

To establish a ‘start-up grant’ research programme which awards up to £15,000 to allow researchers to undertake small projects, either as complete programmes or as a preliminary action to develop future full projects.

The Aim:

The Impact:

• As a result of Newlife funding, we have contributed to the identification of 50 genes responsible for many genetic conditions such as Noonan Syndrome, Bardet Biedl Syndrome and Lymphoedema. • In many cases this has led to further discoveries. For example, with Noonan Syndrome the identification of the one particular gene (PTPN11) led to the discovery that this was just one in an important cell division pathway (RASMAPK) and that there were further genes responsible for Noonan Syndrome. This created a far greater understanding of how the condition occurred and was the first important step on the road to helping researchers provide vital information that could lead to early diagnosis.

• Newlife has funded 72 start-up grants, many of which have led to full research projects. These have provided the vital preliminary data, results and hypotheses which represent the first rung of the ladder on the way to significant discoveries. As one researcher said, “Newlife has a key role in providing seed funding that leads to future projects funded by research councils”. In fact, on 35 occasions Newlife has funded research projects which develop theories and research from previous studies still further.

To demonstrate a commitment to making discoveries relative to the genes responsible for many genetic disorders.

The Impact:

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27/03/2013 21:00

Unlocking doors to improving child health - Real Research (continued) Safer prenatal diagnosis...

Relevant and successful treatments...

The Problem:

Once research had identified how birth defects can occur (through gene discoveries), breakthroughs were needed to safely identify birth defects in utero, thus removing any risk to the unborn child.

The Aim:

To ensure funding for research, looking at safe ways to develop prenatal diagnosis of as many birth defects as possible.

The Impact: Newlife has contributed towards funding new techniques which safely assist in the diagnosis of birth defects. â&#x20AC;˘ Example 1 - Research was funded towards successfully investigating whether MRI imaging could be used to determine the diagnosis of children with Craniosynostosis (early skull suture fusion). This was previously tested through Computed Tomography (CT) which is associated with significant doses of radiation and can result in cancer and cataract formation in later life. â&#x20AC;˘ Example 2 - A research project which is currently active aims to develop a series of non-invasive pre-natal tests for known micro-deletion syndromes. Such conditions are rare but can cause mental handicap while some can lead to facial dysmorphia. The grant proposal aims to develop a non-invasive pre-natal test for known microdeletion syndromes. These tests are currently used after birth when testing children with significant intellectual impairment. The aim of the research is to be able to make tests available pre-natally to significantly help diagnosis.

The development of expertise was needed to assist in the management and treatment of birth defects.

The Aim:

To ensure funding for research, looking at opportunities to develop ways to manage conditions and new treatments for birth defects and syndromes.

The Impact:

When Newlife first started awarding research grants, the primary focus was diagnosis and identification of genes. As research into rare conditions and syndromes has developed, so the number of grants awarded looking specifically into the management and treatment of birth defects and syndromes has also increased. â&#x20AC;˘ Example - A research project which is currently active aims to negate the effects that severe craniofacial birth defects can have. Such defects occur at a relatively high frequency (1/1000 live births). The aim of the project is to use stem cells that can be used within the relevant tissue to help repair critical defects. This will greatly improve surgical practice and decrease the need for repeated surgical interventions. One such surgical operation occurred at Great Ormond Street Hospital last year, through the replacement of a damaged trachea. This is a good example of how research can translate into medical practice and result in a successful outcome for the patient.

Newlife Foundation: 21 Years of Care and Action

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27/03/2013 21:00

“

Newlife research programme provides a unique opportunity for studying genetic diseases - in particular rare and severe congenital diseases - which few Foundations support such research in. Dr. Wei-Li Di

”

Securing the future of research... The Problem: A programme was needed to allow research students to develop their skills and give them experience of projects at a leading university or hospital. The Aim: Set up a training programme to encourage more highly skilled graduates into medical research and develop the expertise which leads to advances in child health. The Impact:

In the 1990s there was a substantial problem with attracting and retaining medical researchers, who were often lost to other careers. Funding was very limited, Government had indicated that it would cut funds further and there was a lack of job security, which were all reasons cited for the problem. It was also increasingly difficult to attract doctors to the field of research as it was not easy for them to undertake research as part of their training, unless they specifically wanted to develop a full time career in research. It was against this backdrop that Newlife agreed to fund two research training projects for BSc and PhD students at St George’s Hospital in London. Since this commitment was made in the late Nineties, Newlife has spent close to £1.6 million helping up to 70 prospective researchers work on projects first hand, giving them vital experience and important skills needed for a career in medical research. Many of these students have since gone on to become key researchers with their own laboratories who continue to investigate and make breakthroughs in key areas of child health.

Newlife has funded Europe’s first Birth Defects Research Centre.

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27/03/2013 21:00

Research making a difference... Noonan Syndrome Originally the founders of the charity came together through a desire to provide better understanding of Noonan Syndrome. Having achieved some success with this, the charity was founded to widen its research into birth defects in general. Noonan Syndrome is an inherited disorder. The principle characteristics include short stature, congenital heart defects and sometimes learning difficulties. Our first task was to establish a family support group and, through this, to recruit a cohort of 150 families for clinical and genetic studies. Over a period of 25 years, these families have been followed up by Professor Patton (who became the Medical Director of Newlife) at St George’s Hospital in London. The studies have included developing a better understanding of the heart problems including cardiomyopathy, recognition of complex clotting abnormalities, treatment of short stature with growth hormones and a unique study of the long-term history of the disorder.

Gastroschisis In addition, working with colleagues in Holland and New York our work has identified the first causative gene, PTPN11 and chromosome 12. This discovery of the first gene led to the realisation that this was a key gene in a pathway for cell division called the RASMAPK pathway. Other genes for Noonan Syndrome have been found in this pathway and their important role in cell biology is being revealed. We chaired an international meeting for researchers in the RASMAPK pathway at the European Society of Human Genetics in Barcelona in 2008 and, from this, annual meetings have taken place to advance therapy. Currently there are very encouraging results in treating cardiomyopathy and possibly improving learning difficulties by using established medicines in this pathway and a further 1600 chemical components are being screened. This has been a core project for us over 20 years and shows how it is necessary to build on basic knowledge to give accurate laboratory diagnosis and, ultimately, treatments may evolve from new approaches

Gastroschisis is a congenital defect of the abdominal wall. It occurs in between one in 2000 and one in 10,000 births and has been increasing over recent years throughout the Western world. It has therefore become a priority for the charity and we have funded several projects: • We funded an international workshop at the Royal Society of Medicine to review current knowledge. • We have commissioned epidemiology studies to look at the frequency across the country in connection with the British Isles Network of Congenital Anomalies Register (BINOCAR). • We have commissioned studies on the best practice for surgical treatment with the British Association of Paediatric Surgeons. The success of surgery has improved with 90 per cent of affected children now surviving surgery and recovering from the defect. • As some of the clusters occurred in South Wales we asked the Dept of Public Health in Wales to look in detail at the cases there. • We looked at the possibility that the increase may be related to the use of recreational drugs but the analysis of drug use through hair samples excluded this.

Newlife Foundation: 21 Years of Care and Action

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27/03/2013 21:00

“

They will support research into conditions that are devastating and without a cure even though they are not well known. Newlife therefore fills a critical niche in UK biomedical research. Professor Tom Gillingwater, University of Edinburgh

”

Further work at University College London showed that there are markers of information in the amniotic fluid surrounding the affected babies in utero and we are now proposing to commission research looking into the probability of an unrecognised infection in utero causing the defect. This is likely to be linked to some as-yet unrecognised environmental factor. It is now one of our priorities to identify this as it is likely this would lead to effective prevention.

“

Without Newlife so much fabulous work could not be done.

”

Professor Graeme C.M. Black DPhil FRCPphth

Research 4 LT.indd 12

27/03/2013 21:00

â&#x20AC;&#x153;

Funding from Newlife has enabled us to develop an understanding of disorders not previously known to us.

â&#x20AC;?

Professor Chris Oliver, Cerebra Centre for Neurodevelopmental Disorders

What do researchers say? To analyse how effective the research funded by Newlife has been, we decided to go straight to the people who understand this best â&#x20AC;&#x201C; the researchers themselves. We sent a simple survey to 37 researchers who had completed projects in the last five years to ask them seven simple questions about the impact of the research. Out of the 37 surveys sent out; 21 were completed and returned (57 per cent returned).

The results were as follows:

Research funded by Newlife helped develop a new understanding of the conditions researched... Over three quarters of respondents (76 per cent) strongly agreed that research funded by Newlife had helped develop a new understanding of the condition(s) researched. In fact, only one person out of the 21 respondents disagreed with this statement Strongly Agree

....................

76%

Slightly Disagree

Agree

..........................................................................

19%

Disagree

Slightly Agree

..................................

.................

.................................................................

Did Not Answer

.......................

Strongly Disagree 0% ...........

Research funded by Newlife significantly contributed towards diagnosis... Over half (52 per cent) strongly agreed that research funded by Newlife had significantly contributed towards diagnosis of a condition. Diagnosis is an important step along the road, particularly for rare birth defects and syndromes. Being able to provide an accurate diagnosis will help to inform families, give them the opportunity to seek medical and financial support and, most importantly, diagnosis of a condition will ultimately lead to treatment. 48

Strongly Agree

52%

Slightly Disagree

Agree

19%

Disagree

....................

..........................................................................

Slightly Agree

..................................

.................

.........................................................

Did Not Answer

.......................

14%

Strongly Disagree 10% ...

Newlife Foundation: 21 Years of Care and Action

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27/03/2013 21:00

Research funded by Newlife has identified genes responsible for certain conditions and syndromes... Over three quarters (66 per cent) of respondents agreed (on some scale) that research funded by Newlife had identified genes responsible for the condition/syndrome investigated. Identifying the genes responsible for a particular condition is extremely important. Research can identify not only which gene is responsible but also whether the condition/syndrome occurs as a result of a duplication, deletion or mutation of a gene. If researchers can identify the gene responsible and the reason for the change in the gene, then they can target ways to prevent this from occurring in the future. Strongly Agree

....................

33%

Slightly Agree

Agree

..........................................................................

19%

Slightly Disagree 10%

..........................

.........

14%

Disagree

.........................................................

10%

Strongly Disagree 14% ....

Did Not Answer

.................... 1

Research funded by Newlife contributed to finding a new treatment for a condition... Just under half, 47 per cent of respondents agreed (on some scale) that research funded by Newlife had contributed to finding a new treatment for a condition. Research can be seen as a long journey that starts with the discovery of a condition and ends with finding a treatment. Many of the other research grants funded by Newlife are taking those ‘first steps’ at the start of the journey which will ultimately lead to treatment. When Newlife started to fund research over 20 years ago, much of the basic research focussed on improvements in diagnosis. However, as research has developed, a significant proportion of research projects are now focussed on providing treatments for various conditions. This year (2012/13), half of the research grants that have secured Newlife funding are focussing specifically on treatment of a condition or syndrome.

“ Research 4 LT.indd 14

Strongly Agree

....................

14%

Agree

..................................................................................

Slightly Agree

..........................

29%

Slightly Disagree

.................

Disagree

.........................................................

14%

Strongly Disagree 24% ...

Did Not Answer

.......................

Newlife has an immense impact on our research. At a time when securing research funding was incredibly difficult and more so in view of our area of interest, the grant enabled us to set up the project. Without the initial funding from Newlife it is highly likely that our research would never have been able to start. K. A. Eley MBChB, MRCS(Ed), PGCTLCP, FHEA, MSc (Oxon) Nuffield Department of Surgical Sciences, University of Oxford

”

28/03/2013 12:00

Newlife Foundation has always been very passionate about the extremely important role that medical research plays in advancing knowledge, diagnosis and ultimately treatment of many birth defects and syndromes. However, there has, in the past, been a significant problem in recruiting and retaining medical researchers. To help address this problem, Newlife Foundation has spent ÂŁ1.6 million, helping up to 70 students, giving them first hand experience of working on research projects in laboratories. Many of these students have since gone on to become key researchers in different fields, with their own laboratories, playing an important role in child health. One such researcher is Nayana Lahri Swales who kindly agreed to be interviewed, to demonstrate just how important training and relevant experience can be to budding researchers.

Nayana Lahri Swales Researcher

Newlife Foundation: 21 Years of Care and Action

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27/03/2013 21:00

Research - the next generation... Q. How did you start off in the field of medical genetics? A. I had started as a medical student, completing my Bachelors degree and in 1999 I was awarded one of the scholarship programmes funded by what was then the Birth Defects Foundation (now Newlife Foundation for Disabled Children).

Q. What did you do during that one year scholarship? A. We were researching a condition called Robinow Syndrome, an extremely rare genetic disorder leading to skeletal abnormalities including shortening of the arms and legs and abnormalities to the head and face. This was with Andrew Crosby at St Georgeâ&#x20AC;&#x2122;s Hospital, London. This research proved to be successful and the team identified the gene responsible for this rare disorder. It was an exciting discovery!

Q. Since that inspirational year, when you made the decision to pursue clinical genetics, what have you accomplished? A. I qualified in 2002 and did one year in general surgery. I then found applying for jobs was much easier, having gained first hand experience. It meant that I had something different to talk about during the interview. The BSc scholarship training had effectively allowed me to stand out from the crowd. I have now been working in genetics for 10 years and have worked in neurology before working on research for Huntingtonâ&#x20AC;&#x2122;s Disease for four years. Currently I am in the second year of a four year training programme in Clinical Genetics.

Q. Fantastic, and finally - what impact do you feel that programmes such as the BSc scholarship have on the research community?

Q. What did it mean to you to secure the scholarship?

A. I feel they have a significant impact. There are not many opportunities for prospective

A. I was very pleased to secure the scholarship. It made a big difference and ensured that I

researchers to gain vital experience, to help them get some ideas on the career direction they wish to take. I am aware that a number of students from the first year of the scholarship programme that I was involved with have a significant interest in clinical genetics and have forged their own careers in similar fields. This is therefore about securing the next generation of researchers who will go on to make crucial discoveries. Programmes such as the BSc scholarship sparked enthusiasm for medical research at an early age. Without such programmes potential expertise could be lost, this would be devastating for the field of medical research.

had funding for the extra year at medical school. That year was also very important for me in terms of career direction. It inspired me to go on and pursue a career in clinical genetics.

Q. How important was it to get involved with actual research happening in the lab at such an early age? A. Getting involved in research at an early age was really important and beneficial. To get that experience early and to find out what career options were open to me was crucial. I also developed a real enthusiasm and passion for research and clinical genetics at an early age.

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27/03/2013 21:00

“

Newlife has a key role in providing seed funding that can lead to future projects funded by Research Councils. Birth defects have individually rare causes and attract less funding from Research Councils and industry so charity funding is vital.

Aberdeen (5)

”

Dr. Claire Russell, Lecturer in Veterinary Basic Sciences Edinburgh (7)

Glasgow (3)

Newcastle (10) Whitehaven (1)

Leeds (9)

Manchester (19) Liverpool (3)

Sheffield (4)

Leicester (4)

Birmingham (12)

Cambridge (12)

Key

Cardiff (2)

Bristol (3)

London (103) = 103 grants funded in London

Bath (2)

London (103) Sutton (2)

Salisbury (2) Southampton (4) Exeter (2)

Oxford (19)

Name of Institute

City

University of Aberdeen

Aberdeen

University of Bath

Bath

Birmingham Women’s Hospital

Birmingham 6

The University of Birmingham

Birmingham 6

St Michael’s Hospital University of Bristol

Bristol

University of Bristol

Bristol

Addenbrookes Hospital University of Cambridge

Cambridge 5

University of Cambridge

Cambridge 7

Cardiff University

Cardiff

University Hospital of Wales

Cardiff

Westlakes Research Institute

Cumbria

MRC Human Biochemical Genetics Unit Edinburgh

University of Edinburgh

Edinburgh

Royal Devon and Exeter Hospital

Exeter

Royal Hospital for Sick Children

Glasgow

University of Glasgow

Glasgow

St James University Hospital

Leeds

Newlife Foundation: 21 Years of Care and Action

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27/03/2013 21:00

“

Newlife plays an extremely important role in terms of funding research on the basis of the rare genetic diseases, I would like to commend Newlife for the wonderful work you do. You should be tremendously proud.

”

Professor Yanick Crow, Professor of Genetic Medicine, University of Manchester

Real Research around the UK Name of Institute

City

University of Leeds

Leeds

MRC Institute for Environment and Health, University of Leicester University of Leicester

Leicester Leicester

2 1 3

Name of Institute

City

Institute of Psychiatry, Kings College London

London

International Centre of Eye Health London School of Tropical Medicine

London

NOFAS-UK

London

Name of Institute

City

Institute of Health, University of Newcastle

Newcastle

Newcastle Fertility Cente

Newcastle

Northern Region Genetics Service

Newcastle

Royal Victoria Infirmary

Newcastle

Institute of Child Health, Alder Hey Children’s Hospital

Liverpool

Northwick Park Hospital

London

University of Newcastle

Newcastle

Royal Liverpool Children’s Hospital

Liverpool

Queen Charlotte’s Hospital

London

Churchill Hospital

Oxford

Bart’s and the London School of Medicine London

Royal Brompton & Harefield NHS Trust

London

Birbeck College

London

Nuffield Department Clinical Laboratory Sciences

Oxford

Charing Cross Hospital

London

Royal Free and University College Medical School

London

University of Oxford

Oxford

Royal Veterinary College

London

John Radcliffe Hospital

Oxfordshire 3

Department of Neurogenetics, Imperial College School of Medicine

London

St. George’s Hospital

London

St Catherine’s College Oxford

Oxfordshire 1

Eastman Dental Institute

London

St. Thomas’ Hospital London

London

Wessex Regional Genetics Laboratory

Salisbury

University College London Hospitals

London

Sheffield Children’s Hospital

Sheffield

Wolfson Institute of Preventive Medicine London

University of Sheffield

Sheffield

Great Ormond Street Hospital, Institute of Child Health, University College London London

Guys Hospital

London

Imperial College London

London

Imperial College of Medicine Institute of Obstetrics and Gynaecoloy

St Mary’s Hospital, University of Manchester

Manchester 12

London

The University of Manchester

London

The Princess Anne Hospital

Southampton 3

Manchester 7

Wessex Clinical Genetics Centre, Princess Anne Hospital

Southampton 1

Department of Human Genetics

Newcastle

Institute of Cancer Research

Surrey

Edith Cowan University

Newcastle

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27/03/2013 21:00

Campaigning and Awareness Campaigning LT.indd 1

27/03/2013 21:02

The BIG numbers 750 1174 1174 Freedom of Information requests sent out by Newlife to local statutory services to drive better understanding and provisions.

245

245 combined signatories from MPs supporting Newlifeâ&#x20AC;&#x2122;s two Early Day Motions (EDMs) calling for the better provision of essential equipment to disabled and terminally ill children.

50 government consultations that Newlife has responded to, affecting services and policy locally and nationally since 2010.

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Almost 750 interventions made when statutory services refused equipment, successfully overturning many decisions and restrictive policies.

200

Over 200 conferences and exhibitions attended by Newlife, informing thousands of families and professionals about the charityâ&#x20AC;&#x2122;s services.

20 years liaising with relevant groups on public health issues, driving policy and a better understanding of familiesâ&#x20AC;&#x2122; needs.

27/03/2013 21:02

Campaigning - Twenty years of action No more feelings of isolation...

More funding for major research...

The Problem: Families of children affected by debilitating inborn conditions felt isolated because there are thousands of different conditions. One term was needed to explain them.

The Problem:

The Aim: Ensure the term ‘Birth Defects’ becomes widely recognised, overcoming family and child isolation.

The Aim: Newlife saw that many conditions were under the umbrella of ‘birth defects’, as, despite their differences, they have one thing in common - they all occur in-utero (before birth). This made research focussing on the commonality of conditions possible and effective.

The Impact: • Newlife introduced the term in the UK, which is now widely used in the health sector, media, government and the public, achieving better recognition for the many syndromes, diseases and malformations and reducing the feeling of isolation.

“ 56

I think that your wonderful charity is doing excellent work. David Cameron

”

The thousands of conditions were being exhaustively tackled, one by one, meaning little funding was available to make big leaps forward, it was spread too thinly.

The Impact: • Stories published on the ‘common factor’ between these conditions and as a result birth defects are now the focus of major research. • Conferences and events held to stress the importance of highlighting birth defects as a target for improving child health. As a result, individual conditions have now secured funding for further research. This includes Newlife’s investment of over £13million. • As a result of greater funding, more doctors have trained in the subject. This means improved clinical services are available across the UK and more focussed research has been achieved.

Newlife Foundation: 21 Years of Care and Action

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27/03/2013 21:02

Challenging the failures of the statutory system... The Problem:

Newlife received an increasing number of applications for ‘essential equipment’ as statutory services failed...

The Aim:

To understand and communicate why the statutory system was failing these children and the effects on their lives.

The Impact: • In 2007 Newlife launched the campaign ‘It’s Not Too Much To Ask’ revealing for the first time the ‘Cinderella services’ of statutory equipment provision. • This data formed the first real understanding of the national picture of provision of equipment for disabled children. • Our campaign and subsequent report directly prompted an official government review. There is a comprehensive review looking into the provision of equipment for disabled children for which Newlife has been a key stakeholder in government consultation.

“ Campaigning LT.indd 4

• Newlife became the first large scale user of the Freedom of Information Act when, in 2007, it asked every single Primary Care Trust (PCT) and Local Authority (LA) for their spend on disability equipment and then published the results. This data was requested by government agencies on multiple occasions. Our barrister’s report, which highlighted the illegality of failed provision, is still referred to by the Department of Health (DH) and Department for Education (DfE) in overturning restrictive criteria policies set by local authorities. • Since the report, Newlife has launched an intervention programme to challenge individual PCTs and LAs who refuse help due to unfair or restrictive ‘blanket policies’. Newlife has successfully challenged £120,000 worth of applications that were initially rejected by statutory services. Individual decisions have also resulted in regional policy changes making more equipment available. • Newlife prompted two Early Day Motions (EDM’s) in the House of Commons, signed by 245 cross party MPs calling for better provision of essential equipment to disabled and terminally ill children. • Government departments now recognise Newlife as a leading authority in the Harry Vincent provision of equipment to children with disabilities.

Newlife has successfully challenged £120,000 worth of applications that were initially rejected by statutory services.

”

27/03/2013 21:02

Campaigning - Twenty years of action Groundbreaking report on the failing system

What front line professionals know

The Problem: Newlife was hearing from families across the UK about how they had to battle to get equipment.

The Problem:

The Aim:

To investigate spend in local areas and define the ‘block’ to provision while establishing the legal obligation of statutory services. In addition highlight the results to drive understanding by policy makers and achieve improvement.

The Impact: Our ground breaking report entitled ‘It’s Not Too Much to Ask … that disabled children get the equipment they need’ was published in 2007. Thousands of copies were distributed to every MP, Minister and to statutory services. Many professionals endorsed our findings. We commissioned a barrister to write a report on the obligations of statutory services to make such equipment provision by Law, and sent this report to the legal advisors of all local statutory services. Using the Freedom of Information Act, we defined that on average only £30 was being spent on equipment per disabled child. A debate and questions in the House of Commons, followed by a review, was called for by Prime Minister Tony Blair, to examine the issues and find improvements.

Front line professionals told us the problems they were facing as they worked to support disabled children, when they couldn’t get the equipment the child needed.

The Aim:

To understand the specific problems blocking front line professionals when they applied for equipment locally. Why was it being denied and why did so many professionals know there was no point in applying as their application would be refused?

The Impact: The Newlife report ‘From the Front Line’, published in 2012, analysed the responses of over 4,000 Professionals, Occupational Therapists, Physiotherapists, GPs and others. The information captured from equipment grant application forms to Newlife clearly showed the issues. Statutory budgets were often set too low and so many ran out half way through the year; restrictive lists of (often very basic) equipment were put in place; rationing policies existed, e.g. one piece of equipment per child per year (regardless of the seriousness of the need). This report was backed by leading bodies including the Royal College of Nurses, the College of Occupational Therapists and the British Healthcare Trades Association. Questions about provision of equipment were asked within the House of Commons. Today we provide information to health and social care services around the UK so they can understand how many children have been failed and how Newlife has to pick up the bill to prevent children suffering.

Newlife Foundation: 21 Years of Care and Action

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27/03/2013 21:02

Awareness - So families know where to turn Lack of public knowledge...

Raising awareness of preventative measures...

The Problem: Lack of awareness among the public of the effects of childhood disability.

The Problem: Preventative measures that are available before birth.

The Aim: To raise public awareness regarding the issue of child health and disability and to inform of the services that Newlife Foundation provides.

The Aim: Inform families of pre-conceptual aid to reduce the chances of birth defects.

The Impact:

• Newlife constructed the leaflet “Feeling Lucky”, sent out to a target audience in 1994 to young women and men to make them aware of the five-point pre-conceptual plan to advance the opportunity of having a baby that did not have a birth defect or condition. • After the government highlighted the importance of women taking folic acid 20 weeks prior to conception and during pregnancy, Newlife discovered that many women were not following these guidelines. Through careful research and PR, Newlife examined folic acid products on the market and advised women which were the cheapest and safest to take. Newlife discovered that some products contained vitamin A in (which can cause birth defects) and reported to Trading Standards.

Awareness raising events and presentations have been fundamental in highlighting the issue of childhood disability and of the services that Newlife offers. Essentially, if no one knows about Newlife’s first-rate services then no-one will be able to get the special care and direct help they need. Since 2007, Newlife has seen an increase in the number of people helped through its services. Equipment grants have risen and calls to the Nurse Helpline increased by 791 per cent highlighting the crucial role that awareness-raising activities have had, ensuring that more people can access these essential services. Newlife has given thousands of talks to make both individuals and groups aware of the issue of childhood disability and also of the child-centric services that Newlife offers.

The Impact:

Harry Vincent

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Awareness - So families know where to turn Imagine going into a restaurant and not being given a menu. That’s what thousands of families face when they have a disabled child. They don’t know what is on offer, what is possible, how to access services and support and who to turn to. Newlife Nurses know that information is the key to families getting the help they need to help their child.

'Tell one - inform thousands'

Reaching those families is not always easy. Many families feel they should or must cope alone. Others simply don’t have the time or energy to search for support. It’s not uncommon for parents to feel isolated and the complex nature of accessing services can defeat the brightest of

Working together we have the opportunity to reach out and touch the families who need us most. So Newlife attends all sorts of events to inform professionals. In turn, they can then inform families that Newlife exists and that we can help them in a variety of ways.

mums and dads. So the first priority must be to let families know that Newlife exists and that they are not alone.

How to reach families: How to reach families was a challenge. Spend millions on advertising or just hope families will find us? Neither is an option for Newlife. We always have better things to do with our funds than paying for adverts and just hoping that families who need us can find us is not the way of Newlife. We are far more proactive than that as an organisation. So we decided many years ago to adopt a strategy which we call: “Tell one - inform thousands”.

Newlife knows that throughout the UK there are hundreds of thousands of front line professionals in health and social care. They are the experts in their fields locally, while Newlife is the expert in the field of childhood disability across the UK.

Newlife takes the message of this partnership directly to professionals such as: • • • • • • • •

Midwives Nurses GPs Occupational Therapists Physiotherapists Social Workers Consultants Teachers

We meet these hard working front line professionals at national and regional • • • • •

Conferences Exhibitions Seminars Team Meetings Special Briefings

Success: Newlife is not widely recognised by the general public but, among an increasing number of professionals, the charity has become a well-known resource to pass on to parents. Newlife knows that making that first call to ask for support is hard for many families. The culture of Newlife is not to be just another faceless charity. That’s why we launched our ‘Call Karen’ campaign. Karen is our Nurse Manager and is the face that thousands now recognise as one of the Newlife Nurses who pick up the phone, chat on-line or answer emails from families. Real people helping real families!

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Trust Professionals pass on details about Newlife to families, confident in the knowledge that they will be treated with the same levels of professionalism, confidentiality and care they too would offer. That’s because Newlife Nurses are the first point of contact for families calling the national helpline.

Awareness - of the real issues: When we tell people that some children die before their equipment arrives, they don’t believe us, or believe it’s very rare. When we say that some children have to sleep on a mattress on the floor because no one will give them a safe bed, or that disabled children’s conditions are worsening due to lack of care and support, they cannot believe it. They say, “But that’s not in our country, not in the UK.” But it is the truth and it is happening here. Children’s disabilities affect ordinary families every day and it may be the first time a member of the public will know of the fight that families have to face, when they have to face it themselves.

If we don’t recognise the issues we can’t change them. Newlife has been raising concerns about: • The increasing number of children with disabling conditions, • Poor access to services, • Poor equipment and service provision, • The need for more medical research investment, • The real life stories of children and their families, • The fight some families have to go through to get help, • How national and local policy affects families and much more. We offer the media the opportunity to write, film or report on the issues affecting disabled children and their families across the UK - whether writing in national newspapers, or online ‘blogs’, Radio 4 or Breakfast TV, a local paper or a national magazine. Newlife is informing stakeholders about the issues, breaking down the barriers of ignorance and telling the truth about the day-to-day issues.

Awareness - in our own words Newlife has given over 500 families the opportunity to write ‘My Story’. These stories are published on our website and, in their own words, they tell of how families struggle and strive and get worn down by the fight to help their child. No one else can tell their story; they do it best in their own words.

The whole UK If your first language isn’t English imagine how hard it is to get help for your child. Newlife provides information on our services in many languages including Urdu, Punjabi, Bangladeshi and Polish.

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The Newlife Pledge Supporters can restrict 100% of the funds they give or raise to be spent how and where they choose, helping disabled children around the UK, often in their own county.

Pathway to Provision... Fundraising.

Fundraising for Newlife Foundation for Disabled Children is vital; we receive no statutory funding or government help. Last year Newlife spent ÂŁ3 million pursuing its charitable aims, it is therefore essential that the charity continues to raise sustainable voluntary income to meet this need. Newlife aims to make fundraising fun and easy so that all of its supporters and volunteers can get involved.

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The BIG numbers Countless £27m £27 million passed by Newlife Trading to Newlife Foundation to support its aims and services, since the trading company’s inception in 1993.

The number of volunteer hours spent helping disabled children through fundraising and the Newlife Opportunity Centre.

£6m

£6 million raised through fundraising alone. In recent years it has been possible for donors to choose exactly how and where their donation is spent.

500

Around 500 corporate stock donors work with Newlife, from High Street stores and designer brands to supermarkets.

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Volunteers & Ambassadors in action There are many opportunities to volunteer your time to help raise vital funds for disabled and terminally ill children. Across the country volunteers are choosing to host coffee mornings, hold jewellery parties, raffles, auctions and sales and are helping disabled children, often in their own counties.

Paralympic coach becomes Newlife Ambassador

Volunteers in action Newlife has many dedicated volunteers across the country who help the charity in a variety of different ways. Here are a few examples of how Newlife’s passionate volunteers have supported the charity over the years.

Paralympic Team GB assistant coach Sinclair Thomas has become a national ambassador for Newlife. Sinclair is a full-time coach for the GB men’s basketball squad and is also currently head coach of the TCAT Shropshire Warriors wheelchair team. Sinclair opened the Newlife third annual Santa Dash in December 2012 and having been to visit the charity’s headquarters in Cannock said: “This is a wonderful charity, I wish I had had access to a charity like this when I was young, it makes a real difference to disabled children’s lives.

Former social worker Carol Edwards started volunteering for the charity by sorting jewellery and organising sales at friends’ homes. During the last three years she has raised a staggering £50,000 and is also an ambassador, giving talks across her county about the charity’s work. Many volunteers enjoy mending broken jewellery that Newlife receives, sorting it and then selling it on at sales and coffee mornings that they organise or attend. Since 2008, June Ward has been a jewellery volunteer and has raised just over a phenomenal £4,000 from sales and parties. Former mayoral secretary Pam Ling from Walton-on-Thames in Surrey got involved with the Mayor of Elmbridge Appeal. Pam began selling jewellery and has so far raised an amazing £9,000. 64

Pictured: Thomas, Newlife ambassador and first recipient of an equipment grant.

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Bringing community fundraising to life

Elmbridge extravaganza

Santa’s sighted!

‘Chuckles For Charity’

In 2009/10 The Mayor of Elmbridge, Councillor James Vickers, chose Newlife Foundation as the main beneficiary of the Mayor’s Charity Appeal and raised almost £90,000 to help children in his local area. The much-needed money was raised through a combination of events, from Elmbridge Fashion Week, to an Easter Egg Hunt for primary school children and from a glamorous ball to the support of local faith groups. Many local businesses also donated.

Newlife held its first annual Santa Dash in December 2010, continued again in 2011 and 2012 with over 50 volunteers dressing up as Santa and then dashing around Cannock Park and into the town centre. The events were extremely successful, with many pledging to do the same again in 2013.

Comedy fans David Benaim and Aryeh Citron organised a charity comedy night in Islington. The event was held in February, and was headlined by top British comedian Adam Bloom. Nearly £2,000 was raised, a fantastic amount which will be spent on Equipment Grants and Kit Boxes for disabled and terminally ill children.

“Visiting the charity to see for myself what goes on motivated me to want to continue to support Newlife” James Vickers

Best foot forward... A team of 18 runners from Northern Ireland company Grainer Packaging took part in the Belfast Marathon in 2011 and raised £1,215 to help buy specialist equipment for local disabled children.

Fashion sales Newlife’s trendy fashion shows and sales are proving a great success and can be hosted throughout the year. If you work for a large company or a school or are a member of a club that has a suitable venue and you want to make a difference then why not give our team a ring and let’s get things started! Sales are popular, easy to arrange and our dedicated fundraising and marketing team can support you.

In memoriam / legacy Losing someone is always hard. Remember them with a memorial gift each year to help disabled children. Alternatively, at funerals consider accepting donations in lieu of flowers. If the person you have lost, loved children and cared for their future, this is a wonderful way to remember them. A legacy will ensure that a child receives the vital equipment they need or will fund pioneering medical research to help understand, treat and prevent birth defects, helping to improve child health. How will you be remembered or remember someone you have lost? 65

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Partnerships Midlands Co-operative

Midlands Co-operative Society Limited

Charity of the Year partnership One of the main contributing factors to Newlife’s success in securing this important Charity of the Year partnership with Midlands Co-operative Society, was our restrictive donation pledge. Newlife guarantees that 100% of all monies raised through this partnership will go directly to buy specialist equipment for disabled and terminally ill children in the Midlands Co-operative trading area. The two-year partnership was launched on May 20th 2012 with a variety of events taking place since, including in-store activities, quiz nights, a car boot sale, community fun days and sporting challenges.

The first eight months of the partnership saw £158,712 raised for Newlife children. A partnership of this scale has a major impact because of the number of disabled children that it will help. To date the Midlands Co-operative has helped 47 disabled children and their families. Many Midlands Co-operative colleagues have gone that extra mile. In Mark Green’s case (pictured) it’s more than 160 miles. Mark is the manager of a Midlands Co-operative food store in Warwickshire. He broke both his 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. As a way of promoting the partnership the company has branded up two of its chilled foods distribution lorries with the charity’s logo. The vehicles carry the message ‘Midlands Co-operative supports Newlife, helping disabled children’. Each vehicle will travel approximately 1,000 miles per week across the Midlands, providing high profile promotion of the charity partnership.

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Partnerships

HSBC Charity of the Year partnership

Marriott hotels

The Charity of the Year partnership for HSBC Midlands Region, was launched in January 2012 with a fundraising target of £60,000. Following a number of presentations to the senior management team, HSBC voted for Newlife because of the 100% guarantee.

Groups of staff at hotels in the prestigious Marriott chain have been doing their bit to support Newlife. The London’s Marriott Hotel Grosvenor Square has supported us through a number of fashion shows and clothing sales. Income generated from this hotel alone has raised in excess of £35,000. Fundraising activities involving staff at other hotels in the chain have included the London to Brighton cycle ride, sales of jewellery and numerous collections to raise money to support our Kit Box service.

The staff took part in a wide range of activities, which included a ‘Global’ fundraising fancy dress day in July 2012, involving all 187 branches. Street parties, a cyclethon, sponsored walks and auctions all helped pile up the pounds! HSBC Midlands staff successfully raised £91,000 for Newlife during their partnership year. A major impact of the partnership was that 92 children received the essential equipment they had been waiting for. Newlife made sure all of the staff realised what an amazing result this was, highlighting the impact that each individual piece of equipment made for each individual child.

Examples of just some of the companies who have worked in fundraising partnership with Newlife Foundation.

New for 2013! New for 2013, we 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. We have also been selected as the Cannock Shopping Centre Charity of the Year and a full calendar of events has been planned. The charity recognises the impact of major corporate partnership and the benefits to its work enabling many more disabled children to be helped and supported. The Stephen Staunton Foundation is also supporting Newlife during 2013 - organising a charity golf day in May and a ball in October.

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Unique recycling partnerships Like most charities, the need for funds is always greater than the funds available. This was Newlife’s situation in 1993 when we considered how we could fund services that would give families reliable support in a sustainable way. We also had to consider that many research projects are undertaken over two or more years, so we had to have funds available to us that we could depend upon. They say that “necessity is the mother of invention”, and from the situation we found ourselves in came the idea of a recycling service that retailers and manufacturers could depend upon to protect their brand and good name while achieving their environmental objectives. “Newlife is different to most charities - through running a highly successful and environmentally sound business, much of the money it needs to run its services is actually earned.” - A corporate stock donor.

Business talk Newlife Trading Limited was born: a recycling company operated separately from the charity which offers a unique suite of services to some of the UK’s and, increasingly, Europe’s major companies. Essentially we take excess stock, customer returns, overorder, quality control failures etc. We de-brand the goods and the items either go for raw material reclamation/ recycling or, if there is still usage in the product, we offer it for sale under a ‘no brand’ retail opportunity. Many companies have now adopted corporate social responsibility (CSR) policies which they are committed to pursue and Newlife Trading offers a complete, easy to use package of stock and logistic management and, in some cases, quality control reporting. With the exception of food and drink as we are not registered with DEFRA, we recycle textiles, furniture, home-wares, accessories, footwear, books, jewellery, watches, gifts, shop display units, graphics and much more.

Most charities run ‘charity shops’ selling goods donated by the public. All our stock is received directly from companies and this highly dependable and unique service holds the key to Newlife’s ongoing success by offering sustainable services, support and investment in research.

Real business partnerships None of this would be possible without the agreement of our hundreds of corporate donors. They give stock to the charity and then the charity passes it to the Trading Company which maximises the profit from these goods. At the end of the year this profit is returned to the charity. It is expected that at the end of 2013, thanks to its committed partners from the corporate sector, the trading operation will have passed over £3m to the charity in that financial year.

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Newlife has to provide these leading companies with a sound and viable offer. We don’t ask for philanthropy; we know there needs to be a mutuality of support. This way everyone wins: • The donor company achieves its environmental and business targets. • Staff in the donor companies appreciate the sensible use of the unrequired goods. • The environment is protected (much stock was previously incinerated). • We employ staff who are disabled and non-disabled, in all areas of the organisation. • Recycling activities are increased throughout the UK and Europe. • Newlife supporters get a good deal through shopping for bargains. • All the aims of the charity benefit from the sustainable funding.

Cannock Superstore

Entrepreneurial culture Newlife has a very entrepreneurial culture. Whether it’s offering schools the opportunity to buy broken jewellery for art projects, participating in joint recycling schemes with donor companies, finding novel ways to re-use goods that were due to be dumped, our nature is to think “outside the box” and achieve an income to help disabled children and their families. Necessity at Newlife remains the mother of invention and we will continue to work in partnerships with companies to achieve our mutual aims.

Uttoxeter Store

Newlife at Home 69

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Challenges

“

The team raised an amazing £52,000 whilst taking part in ‘The Wight Out Challenge’

”

The Ultimate Challenge team

I want to ride my bicycle!

For ten years a team of elite athletes have dedicated their time, strength and efforts to supporting hundreds of disabled children.

A team of 15 cyclists from the Marriott Forest of Arden Hotel completed a 30 mile challenge across Warwickshire to help raise much needed funds for disabled children in the local area.

The contribution of Oliver Mansfield and his team has raised a staggering £120,000 for Newlife Foundation. Their fifth exploit, aptly named ‘The WightOut Challenge’, involved a cycle, walk, run and kayak for 240 miles from High Wycombe to the Isle of Wight, round the island and returning back in just 48 hours.

The challenge is an annual event and staff come together from all sections of the hotel from catering, reception, green keeping and management and get involved.

The team raised an amazing £52,000 for all their hard work, helping buy vital equipment for children in the UK Harry Vincent

Harry Vincent (pictured left) has raised more than £1,000 to help disabled children in the West Midlands by completing sponsored climbs of Scafell Pike and Ben Nevis, the highest mountains in England and Scotland respectively. He said:

“

Newlife does a lot to help children of all ages so I was pleased to be able to help.

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“

Edward has been able to leave the intensive care unit every day since [being provided with a buggy] to go to the play centre, outside in the garden, and spend time with his sister out of his room. It has drastically improved his quality of life

”

Edward’s Mum

Terrific Trusts In 2006 Newlife began approaching trusts, foundations and other grant-making bodies for help in funding our on-going work. To date, 126 such organisations have supported us - many on more than one occasion. As well as helping us to expand our equipment grants programme, this vital investment has been key in helping Newlife develop a number of innovative projects. These enable us to reach a greater number of disabled and terminally ill children in the most cost effective way. The support we have received from grant-making bodies has enabled us to launch the following development projects:

Just Can’t Wait... Investments of more than £200,000 ensure the prompt short-term loan provision of palliative equipment for children nearing the end of their lives. We have established a suite of vital equipment such as beds, buggies, hoists and seating which we are able to deliver to families anywhere in the UK within 72 hours. This provision ensures children can remain in their own homes during their final months and weeks. In the first two years of the project more than 50 families have been helped at this sensitive time.

Reaching out to isolated communities...

Newlife Opportunity Centre...

A number of trusts contributed a total of £17,000 to enable us to launch a pilot project in the Midlands to encourage more families caring for children in ‘hard to reach’ communities to tap into Newlife’s range of practical support services. Since launching the project we have seen the number of Midlands families (including those from ethnic minority communities) contacting Newlife almost double.

Two organisations contributed a total of £15,000 which has enabled us to install a lift in the Newlife Opportunity Centre. This facility is now accessible to all, enabling those with mobility problems to participate fully and develop their skills, experience and confidence through volunteering.

Kit Boxes for kids... Trust and foundation funding has been vital to the establishment and rapid development of the Kit Box project, which gives children with complex needs access to a range of age and condition appropriate sensory and developmental aids. Over £13,000 has been secured to establish a number of Kit Boxes; these are loaned out to families for up to 12 weeks, giving them an opportunity to integrate the toys and aids into their children’s development and therapy programmes. Since launching the project 18 months ago, over 120 children have benefitted.

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Thank You

Through Newlife you have shown your care and determination. You know that through Newlife your gifts are valued. We watch the pennies as every penny can make a difference.

A little story... Perhaps young Joshua sums it up. He heard the need of another child and gave what he had to give.

The next day his mum delivered a little plastic bag with a few pennies in it and a note. The note said it all:

Joshua, aged six, heard in his school assembly how Newlife helped disabled children. He heard how we were trying to raise money for a lightweight wheelchair so that a little boy called Billy could play outside with his friends.

Joshua was saving up for a skateboard, but when he heard about Billy his heart responded and he gave every penny he had to help another child. It’s all he had to give and he gave it freely.

“ 72

To Heather, Thank you for teaching us about Billy. From Joshua

“

Regrettably space prevents us from listing every person, trust, company and organisation who has contributed to making the work of the charity possible over the past 21 years. However to these people, we would say thank you and we hope that you know the difference you have made to the lives of real children in real families across the UK.

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The Thank Youâ&#x20AC;&#x2122;s from children at the back of this report are heartfelt. From everyone at Newlife we join them in thanking the thousands of supporters, volunteers and donors who felt just like Joshua did on that day.

P.S. Joshua did get his skateboard, the equivalent pennies went into the charity as a donation but the original little bag of pennies sits on our CEOâ&#x20AC;&#x2122;s desk to remind us all that a good heart and a good deed is a wonderful thing. 73

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Why? Increasing need More children, thankfully, will continue to survive disease, prematurity, birth defects, cancers and accidents. But many - around one in three we believe - will survive with ongoing needs. So if families and children are not to miss out on provision, if we are to continue to battle to improve child health, if families’ and children’s needs continue to be overlooked, Newlife will be needed more then ever before. Childhood disability is not something that happens to other people; it can happen in all families, and does, every day. So what would you want for your child or grandchild? The best, of course. Newlife is there when families and children need us most.

What does the future hold? More children and families will need our help... 74

“We save more babies and children’s lives than ever before, but it’s not enough to save a life - we must respond to that child’s ongoing needs, not abandon them to suffer or struggle.”

Reduced statutory provision As statutory spending is cut, in response to the world-wide recession, more and more children will be reliant on Newlife for provision of equipment, services and support than ever before. Already cutbacks in equipment services, respite provision, the decline in the number of professionals at local level and more, puts extra demand on Newlife in meeting these needs. In the future it means that Newlife will have a much larger role to play in ensuring children with disabilities, life limiting conditions and terminal illness are not going to suffer and are able to fulfill their real potential. “Without Newlife, thousands of children in ordinary families across the UK will simply go without. As resources become scarce in times of recession, the most vulnerable in our society tend to be hit the hardest. We cannot let this happen. If we do, we should question calling ourselves a developed country.”

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New Opportunity

Fulfilling Potential

Britain is capable of pioneering, life-transforming child health medical research; that can be put into use every day in our clinics and hospitals. Our researchers need backing and support to do their job in the most dedicated way. Through them we will improve child health and reduce infant mortality, miscarriages and possibly, stillbirths. However, investment in research in child health is underfunded. Newlife’s Birth Defects Research Centre is the only one in Europe. Every day Newlife researchers across the UK are working hard to fight to improve child health. Without Newlife the research we fund would simply cease or not be pursued in the first place.

Gone are the days, thank goodness, when children with disabilities were shut away and ignored, although that was not so many years ago. Now we see that - given the opportunity - babies, children and young people with disabilities can grow and fulfill their potential. Anyone who saw the London 2012 Paralympics will have witnessed this. Thousands of adults with disabilities achieve in diverse professions from science and engineering, through to Government and other activities but these people are the exception to the rule. Disabled children are still not given the means or opportunity to be the best that they can be. Too many disabled teenagers are forced to sit at home watching TV all day, are isolated and unable to join in to develop a wide social life and access education. Too many children with disabilities suffer from mental health problems and their families are stretched to breaking point providing dedicated care.

“When they are told nothing can be done to save their child’s life, every parent’s nightmare begins. They live every day hoping that one of the researchers will find a way to help their child. Research holds the key to a better future for our children and their families.”

“We will continue to fail the majority of disabled babies, children and young adults, unless we are dedicated - through campaigning and awareness-raising - ensuring that we fulfil every child’s potential and enable them to become fully engaged, integrated, skilled, working adults, satisfied with life and with continuing opportunities.”

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Each one of us has the opportunity to strive for what we really believe in. If you believe in a better deal for disabled children and their families, for improved provision and better health outcomes and if you care enough to ensure they are not overlooked, please pledge to become a Newlife supporter and together we will work for a better tomorrow.

Join Newlife today and work with us, to make a better future for every child.

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Tel: 01543 468888 / 462777 . Email: info@newlifecharity.co.uk Newlife Foundation for Disabled Children, Newlife Centre, Hemlock Way, Cannock, Staffordshire WS11 7GF facebook.com/newlifefoundation

twitter.com/@newlifecharity

Registered Charity Number: 1001817 in England & Wales. Newlife Trading Ltd. Company Registration Number: 2833372

youtube.com/NewlifeFoundation