Livability News Feb 2010

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Winter 2010

Issue 6

news Aiming for life

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Going where the

sun shines brightly Livability provides holidays for more than 4,000 people a year. Our fully-accessible catered accommodation and self-catering holiday homes offer great breaks.

We specialise in providing affordable holidays for disabled people as well as their families and friends.

Let us book you in.

08456 584478 www.livability.org.uk

Registered charity no: 1116530

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Livability creates choices for disabled people and brings life to local communities. We trace our history back to the Victorian pioneers Lord Shaftesbury and John Groom. Today we offer a wide range of support and education for disabled people and also provide churches with resources to impact their communities.

Livability’s president is Baroness Howarth of Breckland and our royal patron is HRH The Princess Royal.

Contents Dancing days

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Leaps and bounds

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Aiming for a full life

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Campaigning news

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Events

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Aiming for a full life 8

Roger Royle’s Sinai roundup 13

Victoria update 14

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Message from Mary

New equipment will make a real difference for these Brookside residents

Dear supporter.

In this edition of Livability News we’re excited to share stories of two remarkable men with whom we work.

Andy was a fire-fighter until a car-crash resulted in severe brain damage, devastating his speech and movement.

Hugo’s studies and sports were cut short by a shocking knife attack which left him in a coma. Both men are now on the long, slow road to recovery.

And we at Livability are playing our part, providing residential care and physiotherapy for Andy and helping Hugo to get out and about, rebuilding his shattered confidence.

As well as working with individuals, we are working to change the attitudes and systems which hold disabled people back. In this edition, you’ll read about our recent training day helping church leaders understand how to involve disabled people in the heart of their communities. And our campaigns team is working hard to ensure that disabled people have the information they need to make the most of changing government systems.

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Friends like these Friends of Edgware is a group which exists to support Brookside, our residential home in north London. They have recently raised over £4,000 towards upgrading bathroom equipment. New shower chairs and slings enable residents to be safely transferred in and out of showers or baths.

The funds were raised through a sponsored walk by the Reverend Michael Shaw, former chief executive of John Grooms, as well as kind gifts from individuals and trusts. The David Laing Foundation also gave a gift in memory of the late Joan Pacheco, a loyal supporter whose fundraising golf days were the highlight of the Edgeware friends' calendar.

A legacy of hope The family of one of our generous supporters recently saw the difference that a legacy makes.

“Our late beloved mum left a letter with her will which requested that a £10,000 gift be made to John Grooms. After discussion with the legacies department at Livability, we decided to use the money towards the cost of refurbishing a bedroom and ensuite bathroom unit at Hinwick Hall. They agreed to name the unit after Mum, which is immensely comforting to our whole family.”

The family, who wish to remain anonymous, were given a guided tour of the new facilities. Refurbishing the Robinson unit at Hinwick has meant that we now have space for ten new students, who would otherwise have been unable to attend the college.

It is a privilege to be able to work with people like Hugo and Andy. Their determination and positive attitude to life challenge and inspire us all. And I hope that you feel inspired too – you are very much a part of the team which is making all this happen.

“Our mother was interested in the work the charity did with disabled people, and supported them for many years. It will be wonderful to know that her legacy will make a lasting difference to the lives of disabled young people.”

Mary Bishop, chief executive

If you would like to discuss how your legacy could benefit specific Livability projects, before instructing your solicitor, contact Alastair Emblem on 020 7452 2118.

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Dancing days Following last year's visit by the English National Ballet, Victoria Education Centre have started their own ballet class. Jamie Williams from our fundraising department went to investigate.

Every Wednesday evening, after school, a group of disabled children head to the drama studio at Victoria Education Centre and Sports College (VEC), for their weekly ballet class. Having been inspired by the dancers from the English National Ballet who visited the school back in March 2009, Belinda Ellicott, head of dance at VEC, has set up an accessible and inclusive class where ballet is available to anyone who wants to take part.

I arrived to find teachers and students working together to ready the studio for the class. Mats were being laid out and students were preparing for the physical demands of the class. 13 year old Natalie was lacing her beautiful pink ballet shoes that I later discovered were a gift to her from the principal dancer at the English National Ballet.

The class began, and what I thought would be a basic introduction to ballet turned out to be a fully structured class. They were learning frappes, plies, and battement tendu; words I had never heard before, but seemed like second nature to the students.

“To dance is to be out of yourself. Larger, more beautiful, more powerful.” Agnes de Mille

Regardless of their individual abilities, each child taking part in the class was finding a way to fully participate.

Everyone was finding a way to express themselves through dance. Physiotherapists were helping children point their toes, and wheelchair users were spinning so fast I felt dizzy. Some of the children in the class couldn’t walk; some couldn’t talk, but because of the incredible vision of VEC and Belinda Ellicott, every single person in that room could dance.

Livability Golf Day 2009 Our second annual golf day took place on the beautiful course at Selsdon Park, Croydon. We enjoyed an exciting day’s play, followed by a gala dinner and prize ceremony. As well as individual supporters, we were joined by corporate teams including Thomson Reuters, Punter Southall, Health Lambert, Alexander Forbes, Connaught Compliance and Guardian Water. Total Office won the team competition and PKF followed close behind. We also received kind donations and sponsorship from companies including Zurich Insurance, Punter Southall, Barclays, Bates Wells and Braithwaite, Fletcher King Howard and Anthony Collins Solicitors.

The golfers from news agency Thomson Reuters

Thanks to all who took part – we’re already looking forward to next year.

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Leaps and bounds Andy has lived at Treetops, one of our care homes in Essex, for five years. His mum, Enid, tells his story.

Five years ago, when my son Andy was just 23 years old, the unthinkable happened. Andy had finished a long shift working as a fireman. Although he was tired, he went to visit a friend who had just been diagnosed with motor neurone disease. Then, as he was heading home, he fell asleep at the wheel and crashed. He had a very bad swirl injury to the brain which affected his entire body. One day my son was fit and healthy and the next he was unable to eat, speak or walk.

The doctors told me that Andy would need full-time care and may never get better. They offered Andy a place in a nursing home for the dying. But how would he find the strength and hope to fight to get better when surrounded by death and suffering? The doctors offered me no other alternative, so all I could do was pray.

Then my friend told me about Treetops, a highdependency centre which provides 24-hour care. My prayers had been very angry, but when I looked round Treetops, I realised that thankfully they had been answered.

This was a care home with a big difference. It was full of tailored specialist care, real love and, best of all, hope.

All the residents at Treetops are younger, so Andy has been able to make lots of friends of a similar age to him. And the staff really care about Andy’s well-being. They do everything they can to make sure he is not in pain. They have never given up on him.

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Trampolining strengthens muscles, improves balance and is great fun

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Thanks to the amazing care at Treetops, Andy has come on in leaps and bounds - the results feel like a miracle. Before Andy came to Treetops he was being fed through a drip; however, two weeks after his arrival the nurses had got him back to eating proper food.

Eating was Andy’s first achievement and he hasn’t stopped there.

Treetops organised an operation to straighten his feet and they’ve given him years of tailored, intensive physiotherapy. This, along with his relentless determination and bravery, means he is able to walk again.

Admittedly it is not as easy for him to walk as it was before the accident, but I’m so happy to see him back on his feet. If he had been put in the home that the doctors recommended, he would only have received six months to recover his mobility and eating before they gave up on him.

Andy walks most places now. He also loves jumping on the trampoline.

Andy has always been really good at sports and loves the outdoors. At Treetops the staff understand Andy’s hopes and dreams and do what they can to help him achieve them. One day they even took him out on a three-wheel Harley-Davidson motorbike, which was the bees’ knees.

He was so excited about it that I bought him a leather jacket especially for the occasion. The look of joy on his face brought a tear to my eye.

Andy’s goals for the future are to get well enough to go back to work, earn a living and be independent. I can’t thank Livability enough for helping him. Without their work Andy and I would not be where we are today.

Thanks to Livability my beloved son Andy was given the chance to live, when everyone else wanted to put him in a home for the dying.

To watch a short film about Andy, why not visit our website? www.livability.org.uk/andy

Andy fulfils a dream on the back of a Harley 7

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Aiming for a full life After surviving the knife attack that killed two of his housemates, Hugo lost his reason for living. Now, thanks to your support for Livability, Hugo has found a target to aim for and is rediscovering his zest for life.

“I was in the wrong place at the wrong time”

Hugo ran downstairs to find two men bleeding to death on his kitchen floor. One of their housemates wielded a seven-inch meat cleaver. Hugo was next.

He wasn’t even supposed to be home that night. He juggled two jobs, one at a warehouse and one at a bar, and made a last-minute decision to swap shifts with a colleague. “I was at the wrong place at the wrong time,” he says.

The machete attack left Hugo scarred, traumatised and unable to work because of his brain injuries. As a lifelong sports enthusiast, the idea that he could never play sport again devastated him. But now, thanks to your support for Livability, he’s thinking about new goals, celebrating the positives in his life, and his next award in archery.

Hugo, now 33, had an incredibly narrow escape from the attack that killed his housemates. As he discovered their bodies in the kitchen, his remaining housemate turned on him, stabbing him in the back, across the face and in the head. Hugo knew he had to run or he would be killed. He fled into the street, but his attacker followed, continuing to stab Hugo as he ran. Hugo says he could feel his arm dragging behind him as it hung from his shoulder by a thread.

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At the end of the street, Hugo collapsed outside a pub. Two men dragged him inside to safety while his attacker walked calmly away to a shop. Hugo had been stabbed 28 times and lost 6 pints of blood. Pub regulars took instructions from paramedics over the phone to stop the blood flow until the ambulance arrived.

Hugo doesn’t remember when he slipped into a coma. Perhaps it was in the ambulance; perhaps it was after he had been transferred to Addenbrooke’s Hospital in Cambridge. He was unconscious for a further three weeks.

Meanwhile, Hugo’s mother in Portugal received a phone call to say that her son had been involved in an accident. She imagined something had happened at work, or that he had been involved in a car crash. When she arrived at Gatwick, having overcome her fear of flying for the sake of her son, police told her that Hugo was going to die. “They told me they were waiting for me so they could turn off the machine,” she says. “I felt sick for the whole of the journey.”

In a coma for three weeks, Hugo's mother hardly recognised him.

When she saw Hugo in hospital, his head was so swollen that she did not recognise him. She moved in to the hospital and stayed with him throughout his coma. “It was horrible. Horrible,” she says. “But I’m glad I was there. He remembered every single word I said to him while he was unconscious.”

Hugo’s mother eventually lost her job because she had to travel back and forth from Portugal to the UK to care for her son. Now, they live together in Bedford, where she is her son’s carer. She writes everything down for him on notes around the house, as his brain injury affects his short-term memory. Five years later, he is still in and out of hospital for reconstructive surgery. He has had 15 operations to his head and many skin grafts and plastic surgery operations across his body. There are titanium metal plates in his arm. He struggles to balance and often falls over around the house.

“I bang into things,” he says. “Sometimes I think the cupboard is further away than it is. But I’m learning to compensate for the lack of sight in my left eye.”

Hugo did not always have this positive, problem-solving attitude to the life he faced after his attack. He had always been fit and active, training in basketball and even playing for a team in Portugal’s first division. But amid the constant hospital visits and intense rehabilitation work, he became depressed. His weight fell to 3 stones below normal and he lost the confidence to go outside.

“I had panic attacks at least twice a week,” he says. “Sometimes they’d happen at home when I was by myself, or out in the street when I met other people. It’s hardly surprising, after what happened to me.”

At one of his lowest ebbs, Hugo heard a talk by Livability’s Lifestyle Choices at a rehabilitation clinic in Bedford. They explained how they make it possible for people to pursue their dreams, achieve goals and realise their ambitions. The talk ignited a memory in Hugo’s mind of the person he had once been. He signed up immediately.

In a one-to-one conversation with staff from Lifestyle Choices, Hugo identified basketball and archery as his favourite sports. Lifestyle Choices researched options for him and he soon joined local clubs. Basketball proved too much of a frustration given his trouble with balance, but archery was a real hit.

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“Archery gives me a boost,” he explains. “It gives me confidence and helps with co-ordination. I have to think about how to hold my head, my shoulders, my whole body.”

The benefits of archery for Hugo are not just physical.

He has made friends at the club and now travels to around 30 competitions a year. Encountering new people in a safe environment, where he can focus on goals, has worked wonders as he learns to master his panic attacks.

“After the stabbing, I couldn’t talk to strangers. I was too afraid,” he says. “Now, I can control my panic attacks more.”

Hugo is a popular member of the club, voted “Person of the Competition” at a recent event because he is so outgoing and friendly. At the archery club’s Christmas party, Hugo is relaxed and enjoying himself. “Hey,” he calls to a fellow archer dressed in full elf costume. “Those ears make you look like Shrek. No – Tony Blair. No – Prince Charles!”

An instructor at the club explains how archery is an inclusive sport. “Anyone can do it, at any age. I’ve taught blind people, people without the use of their arms. We’re like a family here.”

Hugo is now working towards his second-class medal, having already achieved third-class, and his aim is to shoot at full distance. “If I can shoot at full distance, I’ll be able to compete with others,” he says. “At the moment I’m just competing against myself. But I know I’ll achieve this next year.”

It is not Hugo’s drive, ambition or hard work that is holding him back from progressing further in archery.

If anything, it is the lack of money for expensive equipment. Yet Hugo has made a great friend in Andy, who joined the archery club in the same week as him. Now, Andy gives him lifts to competitions across the country and helps out with equipment. “I don’t know what I’d do without him,” says Hugo. “I couldn’t take a taxi to all these competitions.”

Andy can see the difference that archery is making in Hugo’s life.

“It helps massively,” he says enthusiastically. “Sometimes he is still quite nervy when we go out. But without archery, he probably wouldn’t be going out at all.”

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helped in other areas of his life. Now less afraid to go out and meet new people, he has started a weekly computer course at a local college. “I was never interested in computers before the attack, because sport was my life,” he explains. “Now I’m learning basic IT skills, so I can use the internet, emails and Facebook to keep in touch with my friends. And it’s good to get out of the house. I don’t want to sit at home all day, watching soaps. If I’m at home too much doing nothing, bad thoughts come to my head.”

He is also volunteering once a week as a gardener at a riding centre for disabled people. “I enjoy it,” he says. “I like being outside.” It’s also a chance to help other people gain the benefits of sport that he enjoys.

Life after the his traumatic injury is not easy for Hugo, and although his attacker is in a secure mental hospital, anxieties remain. “Now, I have to take pills to help me sleep,” says Hugo. “And I always wake up before the alarm goes off. I never used to do that.”

But rediscovering archery through Lifestyle Choices has given Hugo a new mindset. Now he is absorbed in sport again, he is focused on what is still possible, not on what he has lost. It’s this positive way of thinking, much more like his personality before the attack, which is making a significant difference to his life.

“It’s tempting to think only about the negatives, but you can’t do that,” he smiles. “You have to think about the positives. There are many things people can still do, gardening, horse riding, archery – whatever they are interested in. That’s why I’m grateful to Lifestyle Choices for their help. I know there are so many positives in my life.”

Hugo along with his mum and friend Andy

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Campaigning news Part of Livability’s remit is to speak up on behalf of disabled people, to make sure that the government hears their voices on issues that affect them. The government has a new plan – Individual Budgets (IBs) – which is going to mean a big change in the way that disabled people access services.

Individual Budgets are due to be available right across the country by March 2011.

But we wanted to find out how prepared people are.

We interviewed over 500 disabled people and found that 87% of them had never been told about the new system. But everyone we spoke to said they would definitely want an Individual Budget, or certainly consider one.

“We think that IBs have the ability to transform lives”, says head of campaigns Rachael Christophides.

“But at the moment no-one knows about them, and no-one’s prepared for them.”

The campaigns team are raising this vital issue with central and local government figures, pointing out the urgency of adequately informing disabled people about the changes that are coming soon.

“There’s a mountain to climb before Individual Budgets are able to provide the choice they promise” says Rachael. “We are campaigning to make sure they are more than an illusion – that they really do bring positive change.”

Researcher Helen clicked through over 100 council websites

• 9 out of 10 disabled young people have never heard of Individual Budgets.

• Half of local authorities’ websites have information about IBs at all no IB information.

• Over half phone calls to local authorities about IBs were misdirected.

Hidden treasure Do you have a jewellery box that’s cluttered up with bits and pieces that you never wear? A broken watch, a tangled chain, or an unfashionable brooch? Livability would love to take them off your hands. Our jewellery recycling project can turn your unwanted pieces into support for Livability’s vital work.

Last year we had a jewellery collection at our summer garden party and raised over £1,200. This year we would like to raise even more. If you would like to take part, simply call us on 020 7452 2115 to request a recycling envelope. Alternatively, you can send it Freepost to: Jewellery Recycling, Livability, Freepost KE3232, 50 Scrutton Street, London EC2B 2HL. Your old jewellery may no longer be of use to you, but it will make a big difference to the lives of disabled people.

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How does your garden grow?

Last November saw the launch of our Princess Royal Livability Awards for outstanding service.

We talked to one of the winners, Joe Power, groundsman at Nash College.

How does it feel to be a Princess Royal Livability Award Winner?

I’m over the moon! Meeting Princess Anne was a real honour and a treat. It’s not everyday you get to shake hands with a Royal.

Why Livability?

There are two reasons why I work for Livability. Firstly I feel that Livability looks after me. I’ve been here 17 years now and I really feel cared for. The second is purely and simply the grounds. I love the grounds from top to bottom. Every season offers something new that brings a smile to my face.

What’s changed at Nash over the last 17 years?

When I started at Nash College, the grounds were overgrown with weeds and brambles. There was no grass and not a single flower bed. I have singlehandedly whipped the place into shape!

Do you do it all by yourself?

I manage all seven and a half acres on my own, but I do like to get the students involved, especially with the allotments.

Why I support

Livability Dear all at Livability, You asked people to tell you why they support Livability.

Among my earliest memories, from the early 1930s, are the beautiful fabric (possibly silk) roses that my mother received annually from what was then John Groom's Crippleage. I loved the flowers but I particularly liked the strong little cardboard boxes they came in. They made ideal beds for mini teddies and the like.

When my mother died in 1979 I took over her support of John Groom. I think it is a wonderful and much needed organisation.

With best wishes to all your staff and residents.

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Joe receives his award from HRH Princess Anne

How does your work help the students?

Being outside in the fresh air gives the students freedom. I have put in lots of footpaths in that make it easier for them to get around the place, taking in all the colours and smells that the grounds offer. I know the grounds help the students feel happy and independent.

Thank you from Norwich As you know, 2009 saw us concentrate a good deal of energy on an appeal for John Grooms Court. We have great plans to renovate this Norwich residential care home, making it larger and more accessible. Five new flatlets will give the opportunity for five more people to make their home with us. A conservatory will give more space for residents to socialise, and a new lift will make it easier than ever for people to get about the building and make use of all the new facilities.

The great news is that we are well on our way to meeting our fundraising target. So for all that were able to give, thank you! Once the final funds are in place, we are hoping to start the building work in the next few months. Look out for an update in the next edition of Livability News.

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Events calendar Easter Service

Roger Royle’s Sinai roundup Roger on top of the world

Arriving at a Bedouin camp at 3:45am was an early indication that this trek in the footsteps of Moses was not going to be what might be called a luxury holiday. But at least there wasn’t the prospect of having to cross the Red Sea being pursued by 600 of Pharaoh’s soldiers. It was just the daunting task of climbing Mount Sinai, the Mount of the Lord, that lay ahead.

Fortunately my travelling companions were nowhere near as difficult as the people Moses travelled with. They certainly weren’t moaners like the Children of Israel, who wished they’d never started the journey at all. My companions were great company; helping, supporting and encouraging each other every step of the physical, mental, and spiritual journey.

Having left the Bedouin camp, the next night we pitched up at an eco village tucked away in the wilderness. No electricity, no mobile phone connections, and study and supper were enjoyed sitting round the fire under a sky just bursting with stars. Don’t ask about the loos!

It was on the Saturday that we set off to ascend the Hill of the Lord, but not before visiting St Catherine’s Monastery. Here was the supposed site of the Burning Bush and it was here, surrounded by inspiring icons and precious manuscripts that we set off a security alert – but I won’t go into that!

The climb itself was a test of real endurance. We took the shortest route but even then it was a three and a half hour solid slog in the sun.

Having trodden the well-worn path we were faced with over 700 steps before we reached the summit. I say ‘steps’ but what I really mean is boulders. Coping with these was my ‘Red Sea Moment’. I thought I would never manage it. But I did and, along with the others, I stood on the summit of Mount Sinai marvelling at the sunset, feeling both elated and humbled that we were standing where God and Moses met.

On the way down it was a matter of ‘Lead Kindly Light’ as we all held our torches hoping that our footsteps might not slip. They didn’t and we arrived home safely. Everyone contributed fully to what was a most memorable experience. But there are two special thanks – first of all to Kerry from Livability, who worked and walked her socks off to make sure that all went well. Secondly, heartfelt thanks to all of you who were able to support us.

You indeed were our driving force.

Thank you so much.

9 April Our Light up a Life service takes place in Wesley’s Chapel, London EC1. Join us and special guests in this historic venue. For full details see page 15.

Livability Summer Garden Parties 4 and 18 July After last year’s success, we will be holding two garden parties this summer. With horticultural seminars, a marketplace, teas and cakes they will be the perfect days out for families as well as keen gardeners. Tickets will be complimentary, with a suggested donation of £10 per ticket.

BUPA London 10,000 31 May This 10k run is gaining popularity every year. If you are looking for a fitness goal for the New Year, then why not sign up? Runners of all calibres take part, running through the heart of London, making this an enjoyable day for all.

Hike Hadrian’s Wall 10-12 September Spend three days walking 25 miles along the remaining sections of Hadrian’s Wall. The walk passes through some of Britain’s most spectacular countryside. Spend time in Northumberland National Park and finish at Brocolitia Roman fort.

For more information on any of these events please call the event team on 020 7452 2115 or visit our website www.livability.org.uk/events

Roger Royle

The whole Footsteps of Moses team 13

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The inclusive church Are there disabled people in your church? If some attend, do you know how best to involve them in church life? How does disability fit in with your view of God? A recent Livability training event for church workers set out to address these questions.

The day brought church leaders together with experts and individual disabled people with the aim of giving them the confidence to build disabled people into church life. The group discussed many things, ranging from types of impairment to worship styles that can include everyone. Attendees heard disabled people talking about their experiences of church and were able to ask them questions.

The day was a great success, with Livability’s Community Mission team working closely with staff and residents from York House, our residential home in Ossett. Many who attended the event committed to making changes in their attitudes and church life: "I will be more open-minded to God’s possibilities in everyone, whether disabled or not” said one. Another decided to "Look for more practical ways to enrich the experience in church for disabled people”.

Challenging the way churches see disability

With so much positive feedback, we are planning to hold a similar event in London. If you would be interested in attending, please email Jill Clark at jclark@livability.org.uk

Victoria update You may remember our Christmas letter about our exciting plans for Victoria Education Centre in Poole.

We intend to do radical work on the school, transforming it into a state-of-the-art learning and therapy centre. The first stage is to extend three classrooms in the main building, improving the learning environment for the pupils and allowing teachers more flexibility in their teaching methods.

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We’re pleased to let you know that we have now raised enough money to start work on this phase of the project. Thank you to all who have given generously to this important project, making such a difference to students at the school.

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Light Up a Life Easter Service Friday 9 April 2009 at 2pm Wesley’s Chapel, City Road, London EC1 This Easter, join us for our ‘Light up a Life’ service. We will be celebrating the work of Livability and the impact we are able to have in the lives of disabled and disadvantaged people.

Easter is a wonderful time to praise God for all he has done for us and to reflect on the work we have done. It is also a time to look to the future with renewed hope as we work to change the lives of disabled people.

The service will be followed by light refreshments and a chance to meet Livability staff, supporters and service users.

For more information, please contact Lianna Ovenden on 020 7452 2115 or via email at events@livability.org.uk

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Inspiration There is nothing that is so economical as justice and mercy… We may be told that [our work] is costly and require financial effort; but we may safely say that it is disease that is expensive, and it is health that is cheap!

Lord Shaftesbury, 1858

Livability 50 Scrutton Street, London EC2A 4XQ Tel: 0845 264 1194 Fax: 020 7452 2001 fundraising@livability.org.uk www.livability.org.uk

Livability is the new face of John Grooms and the Shaftesbury Society

Please help Livability continue to change people’s lives.

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