CHAS Seize Every Moment

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SEIZE EVERY MOMENT f “SOME DAYS IT JUST FEELS TOO MUCH BUT CHAS MAKES ALL THE DIFFERENCE.” Yvonne and Colin with their family

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Transcript of CHAS Seize Every Moment

Page 1: CHAS Seize Every Moment

SEIZE EVERY MOMENT

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“SOME DAYS IT JUST FEELS TOO MUCH BUT CHAS MAKES ALL THE DIFFERENCE.” Yvonne and Colin with their family

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RACHEL HOUSE OPENED IN 1996

ROBIN HOUSE OPENED IN 2005

CHAS AT HOME STARTED IN 2003

Rachel House in Kinross and Robin House in Balloch provide hospice services for families in Scotland. CHAS at Home delivers care to families in their own homes when they need it most.

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CHAS THE ONLY CHILDREN’S HOSPICE SERVICE IN SCOTLAND

When your child is desperately ill or dying, the idea of travelling hundreds of miles for care is unthinkable. But that was the situation families in Scotland faced before 1996, when they had to travel to England for the specialist skill and support of a dedicated children’s hospice.

A group of parents and professionals in Scotland joined forces to raise funds and create Children’s Hospice Association Scotland, meeting this vital need for a Scottish service. It became affectionately known as CHAS, and today we care for over 370 babies, children and young people across the country with a wide range of life-shortening conditions. Seize Every Moment is a new fundraising campaign to help us to continue to offer this care over the coming years. Children’s palliative care when and where they need it The children’s conditions may be identified before birth, but often the symptoms don’t emerge for days, months or even years. Some do reach childhood or even adulthood but for many, their lives are unbearably short. Their families endure unimaginable emotional and physical demands.

Our hospices in Kinross and Balloch provide respite breaks for families and wonderful opportunities to spend special times together, as well as end of life care and bereavement support when their child dies. Our CHAS at Home service is delivered by specialist nurses, helping children and their families as far away as the Shetland Isles.

At CHAS we passionately believe that no child and no family should go without the kind of support that transforms their short time together. It’s a privilege to help make life a bit easier for families when they need our help the most.

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THE RAINBOW ROOMA PLACE TO HOLD YOUR CHILD AND REMEMBER SPECIAL MOMENTS

It’s a sad reality that in hospital a bereaved family can only stay with their child for several hours before their body has to be taken away. Our Rainbow Rooms at Rachel House and Robin House are sensitively and beautifully created for a longer final goodbye.

In the Rainbow Rooms, a family can stay with their loved one for up to one week, enabled by a special temperature-controlled room and bedding. They can take their time, knowing that their son or daughter’s pain and suffering is over. And instead of the child being surrounded by medical equipment, there is space, peace, and thoughtful reminders of their life together. Sometimes, before they die, older children and young people take part in making decisions about care at the end of their life. It’s a way to help them prepare for their own death.

These longer, dignified goodbyes are also very important for helping the family grieve and move forwards together.

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“When we arrived it was like a weight being lifted off our shoulders. McKenzie wasn’t wired up to machines anymore – she was just a wee baby. McKenzie was dressed, there were no nurses, no noises. I got to be a dad instead of looking at a baby through a plastic cover. We were given as much time as we wanted. They had a room prepared, like a normal bedroom but a wee bit cooler. There was a crib, her pictures, lights and music playing. It was a beautiful room. We got to say our goodbyes.”

Andrew and Joanne Wallace talking about their newborn daughter McKenzie, who died in their arms at Rachel House, aged five days.

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ROBIN HOUSE £1.4M SPACE CREATION PROJECT

We care for over 370 babies, children and young people across Scotland with life-shortening conditions, and the number is growing. Since Robin House opened in 2005, more referrals have been made each year for respite breaks and end of life care. The children’s needs have changed considerably over time. Many are living longer, requiring more complex medical attention such as ventilation, intravenous medication, parenteral nutrition and peritoneal dialysis. Although families are full of praise for the caring and skilled services they receive, we need to upgrade Robin House. The Robin House project will involve:

n A reception area – a brighter welcome, especially important on a first visit when families may feel daunted, afraid or exhausted

n A garden room – more space for difficult conversations, such as end of life care, in a peaceful setting

n A teenage den – new facilities for young people needing time out from their parents and younger siblings, including an outdoor area and large indoor space

n A play room – a better planned area with more room for activities so families can have fun and create special memories

n Clinical areas and staff workspaces – upgraded to improve efficiency.

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“THE GOOD MEMORIES ARE REALLY IMPORTANT… WE DON’T KNOW WHAT

TOMORROW’S GOING TO BRING.”

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MATTHEW THE MACFARLANE’S FAMILY STORY

Matthew MacFarlane is nine years old and lives with his four siblings, Ashleigh, Niamh, Ethan and Summer, and his parents Yvonne and Colin in Coatbridge. Matthew suffers from Lissencephaly, a rare life-shortening neurological disorder, and he also has other underlying conditions including epilepsy. His health is stable at the moment but unpredictable. CHAS has been supporting the MacFarlanes for about six years including:

n Respite breaks at Robin House approximately every three months

n CHAS at Home support when mum Yvonne had hurt her shoulder and couldn’t lift Matthew, and when Summer needed time in hospital

n Emotional support for Matthew’s sisters and mum and dad

n 24/7 telephone support from the team at Robin House.

Yvonne and Colin explain: “Matthew was diagnosed at 11 months and he’s like a three to four month old baby now, even though he’s nine – he can’t talk or do anything for himself. He’s on oxygen all the time and has to be fed through a tube into his stomach with a special diet, and everything revolves around him. But he smiles and finds things funny with giggles, and there’s a wee look he gives you sometimes, a cheeky look – and a hard look too!

So there’s not very much he can do with us but at Robin House we’ve done things as a family together like swimming as they have a special hydrotherapy pool, or playing in the art room. It’s so important. And the staff are so caring and skilled. We can’t praise them highly enough, what they do is unbelievable. Matthew’s even been snowboarding!

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It helps knowing someone else is caring for him through the night so we can sleep through. It also helps us to have time out with the rest of the kids by themselves as it’s hard to get the balance and pay enough attention to the others. The girls get to know other teenage kids and we get to know other families too, and that helps because everyone’s facing the same thing – you don’t have to act as though nothing’s wrong, because we’re all in the same situation. It’s a home from home and one big family there.

The older girls get supported by CHAS and they can talk about their feelings and how life is for them. So many times, CHAS has made life a lot easier at stressful times. They’re always there at the end of the phone, 24/7. If you’re having a day when everything just feels too much, you can pick up the phone and speak to somebody. It’s all these little things that add up to one big helping hand.

We don’t know what tomorrow will bring – Matthew could catch something as simple as a chest infection and that could be it. CHAS helps us prepare for that too.”

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SEIZE EVERY MOMENTHELP FAMILIES ENJOY THEIR TIME TOGETHER, HOWEVER SHORT

The name of the campaign, Seize Every Moment, is inspired by the words of mum Caroline and reflects our heartfelt commitment to help families enjoy special moments together, to feel like a mum or dad again, rather than a carer.

This campaign is a new way for donors to support CHAS and our most inspiring and important projects. Your support will help give us financial stability to plan ahead so we can continue to meet the needs of babies, children and young people and their families across Scotland.

As an organisation at the forefront of research and development within children’s palliative care, we are committed to offering families choices that meets their individual needs, and to reach out to more families who need us.

Your gift will help children get the support they needYour support of Seize Every Moment will help us ensure every child and young person can receive palliative care when and wherever they need it. With the financial security provided by Seize Every Moment, our directors can allocate funds to our highest priority needs.

Your gift could help contribute to future projects such as:

n The Robin House Space Creation Project

n Providing specialist nursing and medical staff

n Investing in new specialist equipment at Rachel House or Robin House that will improve the quality of life for the babies, children and young people who visit every year.

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WITH SEIZE EVERY MOMENTYOU CAN PLEDGE A GIFT OVER THREE TO FIVE YEARS

Higher rate taxpayer? Increase your gift at no extra costAs a higher rate taxpayer you’ll gain a tax rebate on your donations and you can choose to pass this onto CHAS, substantially increasing your total donation. For example

Join a community of transformative givers Our Seize Every Moment donors all share the same passion, vision and belief in what CHAS is doing. We know how important it is to our donors to see the impact that their gift is making, and this will be a priority for us at all times. Depending on how much contact you’d like, we’d love to update you with monthly phone calls, regular visits and impact reports. We’ll also hold regular events around the country, showing you how your gift is transforming lives.

To find out more, please contact Caroline Campbell on 0141 779 6180 or email [email protected]

Giving Level Total Pledge

Ben Lomond Donor £10,000 – £25,000

Ben Vorlich Donor £25,000 – £50,000

Ben Lawers Donor £50,000 – £250,000

£50,000 given over five years to Seize Every Moment+ Gift Aid increases your donation to £62,500+ Annual Tax Rebate boosts your donation by £2,500 each year= Total donated £75,000

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“ …EVERY ‘INSIGNIFICANT’ MOMENT IS, TO ME, A WONDERFUL MOMENT OF TIME I GET TO SPEND WITH MY DAUGHTER – JUST BEING HER MUM. I BANK EVERY MEMORY I CAN. I’M NOT SURE HOW MANY MEMORIES I’LL BE ABLE TO MAKE WITH AYLA BUT CHAS LETS ME SEIZE EVERY MOMENT.” Caroline, mum to Ayla

www.chas.org.ukScottish charity number SC019724

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Photography by Paul Hampton, Sally Jubb, Nadine Ishaq and Jeff Holmes