within Reach Winter 2014

ISSUE 127 WINTER 2014

withinReach

The Official Magazine of the Association for Children with Upper Limb Deficiency

Groundbreaking technology and inspirational speakers It’s the 2014 Reach AGM It’s

Ability not disability that

matters

within Reach

Please send photographs and stories for Within Reach to: Jane Garrett The Editor, Within Reach, 2 Farmside Cottages, Hound House Road, Guildford, GU5 9JG Tel: 01483 203237 Mobile: 07884 268594 Email: janeg@reach.org.uk

ISSUE 127

CHANGES AT THE HELM P4-5 and 13 REACH FAMILY WEEKEND P6-12 REACH ACTIVITY WEEK P12 TYNCAE P17 SINGLE HANDED GIRL POWER P20 BRANCH NEWS P22

National Co-ordinator: Jo Dixon Reach, Pearl Assurance House, Brook Street, Tavistock, PL19 0BN Tel: 0845 130 6225 Email: reach@reach.org.uk Office hours: Monday-Friday 9am-4pm website: www.reach.org.uk Follow us on twitter: @reachcharity Facebook: www.facebook.com/reachcharity Registered charity no. 1134544

Comments, articles, requests, ideas: We welcome comments, articles, requests or suggestions, for future editions of Within Reach.

Letters: Any letters for publication should include the name and address of the sender, but these can be withheld from publication if requested.

Advertising: Within Reach has a print run of 1,500 and is distributed to members, subscribers, health services and specialists. If you need to reach this key audience, we would be delighted to consider including your advertisement.

Contact Jane Garrett on 01483 203237 The views expressed in this journal are not necessarily those of Reach and are not intended to reflect or constitute Reach policy, or in any way portray an official view.

March 2015

31

Editorial deadline: Material for inclusion in the SPRING issue must be sent to the editor by 31st MARCH 2015

Reach membership Membership of Reach is open to parents of children with upper limb deficiency and other individuals of 18 years and over who are interested in furthering the work of the association. Junior membership is given to children who have an upper limb deficiency.

The UK subscription starts at £30. You will receive a four- monthly magazine plus you will be given access to the ‘members only’ area on our website: www.reach.org.uk Reach Insurance Reach membership entitles the Reach child/adult under the age of 65 to be covered by our limb insurance for up to £50,000.

New for 2014 is the inclusion of members with multiple limb deficiency. Please call Head Office for more detail from the schedule of insurance.

SHARED EXPERIENCES This book, published by Reach, is extremely useful for families who have discovered they have, or are about to have, a Reach baby.

Shared Experiences is a collection of accounts by Reach families of their own real life experiences of having a child with an upper limb deficiency. Their stories are shocking, saddening, funny, inspiring and captivating. All in all, a brilliant realisation of life with an upper limb deficiency. Price: £10.

Contact Jo Dixon at HQ to order your copy.

Within Reach magazine is printed and distributed by Ashley House Printing Co Ltd 1-2-3 Swallow Units, Alphinbrook Road, Marsh Barton, Exeter EX2 8QF

P02

WITHIN REACH MAGAZINE

WINTER 2014 . ISSUE 127

P03

WELCOME TO OUR WINTER ISSUE - NO 127 I am approaching two years as National Co-ordinator and I can honestly say I have enjoyed nearly every minute but cannot believe how fast it has gone!

We have published our Annual Report and are really proud of the way it celebrates our work over 12 months. It is now on the website for all to read.

Reach is growing – we are taking many more calls from new parents expecting a Reach baby or with a very young child, and this translates into more members joining the very active Facebook group, more support for parents and children, and lots of new young faces at the branch get-togethers.

Many new members are finding us as a direct response to the work that Reach is doing to raise our profile in the health press and professional forums – Sian and Bernie are our stalwart volunteers who attend health professional conferences to promote the supportive role Reach provides to families and health professionals.

We take part in Midwifery, Health Visitor and GP events each year, and next year hope to branch out into Occupational Therapy events as well.

Finally, thank you for being such great Reach members and I hope you all have a peaceful 2015!

Jo Dixon

DIARY EVENTS REACH MAY BALL 2nd May Woodbury Park Hotel, Exeter TYNCAE CAMP 22-25th May RAW 2015 - 2-9th August in Calshot, Southampton REACH NORTH WEST BALL 19th September at the Holiday Inn, Bolton REACH FAMILY WEEKEND

!!

30th October - 1st November at the Marriott Hotel, Leicester

BURSARIES AWARDED Jack Fullerton – Bursary for a set of Alice Reins £76 Isabelle Byrne - £800 for car adaptation Roxy Owsnett £600 for car adapation Matthew Phillips - £1000 towards climbing competition costs

GARY PHILLIPS - CHAIRMAN Gary has been involved in Reach for about 14 years.

He lives in Surrey with his wife and two sons Matthew, aged 14, who is missing an arm below the elbow, and Thomas who is 11 years old.

He has been a trustee for a number of years and held the post of Chairman a few years ago. For the last couple of years he has been Vice Chairman supporting our outgoing Chairman, Nigel Tarrant.

Gary brings considerable IT experience to Reach as he works as an IT Database Administrator in the Public Sector.

He has been a member of St John Ambulance for 37 years holding a variety of positions from Ambulance Crew and First Aider to Youth Officer, and he is also a Community First Responder.

P04

WITHIN REACH MAGAZINE

In response to approaches from a number of people, we now have Donation in Memory envelopes as a special way of remembering a loved one at a funeral or memorial service.

These envelopes will enable us to collect Gift Aid on donations. Just let HO or your funeral director know and we can send them direct.

FUNDRAISING OPPORTUNITIES

Reach has places in the BUPA London 10k on May 25th and the London 10k on July 12. Call Head Office if you would like to run in either of these races. Reach can buy other places if fundraisers are keen and can get the minimum numbers to make it worthwhile. Please contact us with suggestions.

MESSAGE FROM THE CHAIRMAN The November Board Meeting is always busy, as it is the first meeting after the Family Weekend/AGM and the official start to the Trustee year.

Before I report our meeting I would like to say a huge thank you to everyone involved in the organisation of the Family Weekend. It requires a huge amount of work. I won't pre-empt any Family Weekend report later on in this issue but I want to acknowledge the efforts of all those involved. And finally - there will be a significant change to the booking procedure for next year’s Family Weekend so when bookings open, please read the details carefully.

Back to the Board Meeting, which was also our Annual Strategy Review Weekend so we met Saturday and Sunday morning. It was time to elect a new Chairman, Vice Chairman and Treasurer, and the results are myself, as you may have guessed, as Chairman, Georgie Johnson as Vice Chairman and Julie Detheridge, as Treasurer. We also co-opted a new Trustee to the Board, Phil Robertson, who has been recruited to the Board for his financial experience.

I would like to thank the out-going Chairman Nigel Tarrant for all his work during his Chairmanship. I am pleased to say that Nigel will be staying on the Board as a Trustee. I would also like to take this opportunity to thank Frank Letch who has stood down after many years as a Trustee. Frank will not be disappearing from the scene as he has agreed to become one of our Ambassadors.

After the normal business was concluded, the rest of the time was dedicated to our Governance Review Results and the action plan. It is recommended best practice that charities should regularly undertake reviews of their performance.

This is not something that Reach has done before and under our previous Chairman, the Board had commissioned an independent review.

In general terms and in comparison to similar type and sized charities we are doing well. The main areas for development were highlighted as the need for clear, written Mission Statement, Aims and Values, and for a documented strategy against which our actions can be measured.

These formed the focus for the Sunday morning strategy workshop.

The result of the workshop was :

MISSION • To be the leading children's charity providing support and information to those affected by upper limb difference.

AIMS Reaching out to:

Reach Board Siân Brooks 15 Paullet, Sampford Peverell, Nr Tiverton, Devon Tel: 01884 820223 email: sianb@reach.org.uk Julie Detheridge 20 Brunswick Road Earlsdon, Coventry, CVI1 3EX Tel: 02476 251185 email: julied@reach.org.uk Lee Gwilliam 9 Ashengate Way Uckfield, East Sussex TN22 3EX email: leeg@reach.org.uk Tania Hannaford Yewsdene, Bottom Road, Radnage, Buckinghamshire, HP14 4EQ email: taniah@reach.org.uk Dominic Hannett 29 Milton Road, Stratford Upon Avon, Warwickshire, CV37 7LZ Tel: 07894 000267 email: dominich@reach.org.uk Claire Hermon 44 Thorney Leys, Witney, Oxfordshire, OX28 5LR Tel: 07764 947256 email: claireh@reach.org.uk Georgie Johnson Vice-Chairman 4 Queens Rd, Wilmslow, Cheshire, SK9 5HS Tel: 07770 931231 email: georgiej@reach.org.uk James Jones Flat 8, Elizabeth Court, Park Terrace, Bognor Regis PO21 2NH email: jamesj@reach.org.uk Alan Meneghetti 3 Eggars Field Bentley, GU10 5LD Tel: 01420 520996 email: alanm@reach.org.uk

• Raise awareness of upper limb difference • Help children reach their potential • Families in need of support • Promote the interests and needs of children affected by limb difference • Ensure the charity is widely known and accessible We also formulated some headings to create a skeleton Strategy, a plan of what we are going to do over the next few years. Our next stage is to put some detail into those headings and ensure each action has a timescale and is measurable. This is the task for the next Board meeting.

The trustees also discussed the issue of acceptable terminology. We will never please everyone but during the meeting we posted a question on our Facebook group page. ‘What is your preferred term to describe upper limb difference?’ Within 30 minutes we had over 40 comments posted. The power of social media! To make these views clearer we have posted an on-line poll which lists the most common terms from the Facebook discussion. Please take part in the poll at https://www.surveymonkey.com/s/RJNFNRK or by selecting the link on our website.

Gary Phillips, Chairman

WINTER 2014

Gary Phillips Chairman 2 Walden Cottages, Westwood Lane, Normandy, Guildford, GU3 2JB Tel: 07044 080140 email: garyp@reach.org.uk Phil Robertson 126 Ash Lodge Drive Ash, Hampshire GU12 6NR Tel: 07973 363014 email: philr@reach.org.uk Nigel Tarrant 64 Embercourt Road, Thames Ditton, Surrey, KT7 0LW Tel: 020 8224 0961 email: nigelt@reach.org.uk

. ISSUE

127

P05

THE REACH FAMILY WEEKEND

The Marriott Hotel in Bristol was absolutely buzzing when hundreds of Reach families gathered for the Family OUR SPEAKERS Weekend, Conference and AGM. Jon White, ex Marine It was an action packed event and leadership consultant for adults and children alike Tina Bridgeman, musician and teacher and the theme this year had to be the irrepressible Nigel Ackland, Bebionic hand pioneer human spirit rising above Matt Howes, international DJ disability to achieve amazing things.

What they all had in common was one or more missing limbs and their stories of achieving ability in the face of disability were extraordinary and THE SUE STOKES inspirational.

THE EVENT WAS A AWARD 2014 TREMENDOUS TEAM Baylee Abbott has won this year’s Sue Stokes Award EFFORT for outstanding achievement. Baylee was just 10 years old when, fed up with being bullied at school about her hands and feet deficiencies, she took the very brave and radical decision to stand up and talk about difference to the whole school.

She delivered an assembly before more than 200 children, showing them her limbs and her prosthetics.

And yes - her actions made a difference.

The other worthy nominees included: Amy Marren, paralympic swimmer and inspirational Reach member.

Anna Welch, gymnast, trumpet player who never lets anything stop her.

Jacob Wood, who is excelling in his swimming and has his silver swimming certificate.

Jamie Cockbill an inspirational member working for a furniture maker creating bespoke furmiture. He paid for his own driving lessons and is driving his own car.

P06

WITHIN REACH MAGAZINE

John Cove, entered the London mini marathon and broke records in the Welch Championships and is a real role model.

Matthew Kill a genuine sportsman through and through.

Mitchell Feaver, in his final year as a child attending Reach Activity Week he showed his true colours – an aspiration to be a leader. A real role model too who is willing to talk to young people and parents alike.

Well done to you all.

JON WHITE’S EXCITING NEW LIFE

‘

‘

ATALES OF HUMAN COURAGE AND ADAPTABILITY.......

I have no resentment about the man who supplied the bomb. My life now is amazing.

There are so many good things out there that need to be grabbed

“Two weeks ago I was doing an interview on Channel 4 about diversity. I asked who could tie a bowtie with one hand or give an explanation for superstring theory? I can tie a bowtie one-handed and Stephen Hawking can explain superstring theory: we need to get rid of this idea of ability and disability. We all have things we can do and things we can’t do. That is a fact. We are all different and that’s OK. “I was an officer in the Royal Marines, a skier, climber, kayaker and it eventually took me to Sangin in Afghanistan, going out on patrol. Danger was always close by. There were the IEDs hidden in the ground and I trod on one. On 16th June 2010 I got blown up. We had zigzagged across open ground in single file. I was number 7 and the next moment I am flying through the air. I landed on the ground with a thud and I kinda knew what had happened to me.

“When you sever the femeral artery it takes three minutes to die of blood loss. The paras took two minutes to check it was safe before getting to me and what they did in the following 60 seconds was nothing short of miraculous. Thousands of people were involved in getting me out of hell alive and back to my family.

“I woke up with my dad and sister at the end of my bed in Birmingham and my girlfriend Becks waiting to be called into the room. We ended up engaged.

“She said “everything is going to be OK and I am not going anywhere.” After 27 nights in hospital we went away to a holiday cottage for three weeks and then I started rehabilitation at Headley Court. I went to the States where they have more experience of prostheses and I tried golf on rough grass, steps, sandpits... Even the process of swinging a golf club was difficult but I had really good fun and more importantly, peer group support. And I managed to run again.

‘

‘

Peer support is so important. You have got it in this room. If you can pluck up the courage just to ask people then you will find the help right here.

“My wedding day was the last time I wore my blues but it was important for me to be able to do the whole day without using a wheelchair and to get married the same as anyone else.

it gave me confidence as it was the most relentless two year period of stress I ever encountered. It pushed me to the edge but I absolutely managed it.

“I started my own construction business but I have closed it down as I was getting more into leadership consulting. I had done it for 10 years in the Marines and it was less risky. We were lucky enough to be on Grand Designs (revisited just after the AGM) and Becks became pregnant during the filming and she is now full term with our second baby. That shows how incredible my life is now. (Pippa May was born just after the AGM.) “Becks and I decided we wanted to do something for charity, so I did the Devizes to Westminster Kayak Race. I am also writing a book on leadership, interviewing people like Kofi Annan, and I am enjoying the challenge. ”

Thank you to retiring branch coordinators Jenny Grace, Jill Hamilton and Katrina Bailey, and also to Paula Zeller, Jo Hodge and Stacy Roulston who couldn’t attend the Family Weekend

“I have no extra help and no special equipment. I went and had a really good time and did not need any assistance whatsoever. I was living in military quarters and had to think about re-employment. I had joined as an officer when I was 19 as a non graduate. I had bought two houses and had a big mortgage and I didn’t think I would be able to earn enough money as I didn’t have a degree. I needed a new set of skills so I decided to buy a plot of land and build a house and project manage it and learn those new skills. The project was amazing and

WINTER 2014

.

ISSUE 127

P07

.......TALENT..... TECHNOLOGY.....

TINA BRIDGMAN picked up her guitar and began playing ‘Stand by Me’. What was extraordinary was that she was using her little left arm to cover the frets and change chords.

She explained that she just changed the tuning of the open strings and used the capo more to change keys. A musician before she lost her hand in a car crash in New Zealand 10 years ago, she learned to adapt and carry on playing.

“We have all got a story,” she said. “Playing the guitar was my life and my first thought was Oh No the guitar, but I play more now than I ever played in my life. And I discovered other things that I love doing. I discovered how to enjoy life, discover things and have fun.

“The feeling and the energy of joy is a creative life force and we all have a story whether it is physical or mental.

I discovered I wanted to share music with others and also discovered I loved swimming and sport and I swam the length of the English Channel.

“I started teaching people of all whole learning process is about information and all the people I my teachers too. I teach voice

aged and abilities. The our ability to receive have taught have been as well.

“I honour you for the support you give the children here and to each other.”

NIGEL ACKLAND is an enthusiastic champion of bionic technology. Aged 47 when his arm was crushed and almost severed in an accident at work, he endured years of unsuccessful treatment before having the limb amputated.

“It weighs the same as a human arm and I charge it every night. It is very easy to use and it does everything I need it to do.

“I have worn it every day and the effect on my life has been extraordinary. Now people smile when they shake hands with me, it’s a sense of the exotic. And at the end of the day isn’t that what we want – to be accepted for what we are?

“Over the last 12 months there have been some really big developments in prosthetics technology and in Germany they have developed a hand for 5-10 year old children to use.

“I know the future can be positive and nothing makes me feel as humble as being here today. Human beings have survived because of their ability to adapt and people with missing limbs have to be the most adaptive in the world.”

P08

WITHIN REACH MAGAZINE

‘

‘

“My company wanted to do the right thing by me but the NHS said it did not provide bionic hands,” he said, “I was in a pretty dark place with mood swings and anger and frustration. After three years I had a heart attack and then I had a call from RSLSteeper asking if I would test their new prosthetic. I became the first person in the world to test it.

I don’t see people with disabilities here. I see extraordinary human beings

‘

‘

.....INSPIRATION AND DETERMINATION.....

Some things in society need to change, like disability – I can do my job better than 75% of DJs in Europe but I am the one considered disabled

Matt started DJing when he was a child and landed his first gig at 18. “I juggled two jobs and then went overseas to DJ in Greece, Tenerife and Bulgaria and in 2011 went back to Greece and had an accident on my moped. I lost my right arm. After seven days I was discharged from hospital and after six days recovering I got bored and after 14 days, with 102 stitches in my arm, I went back to DJing. Every bar, club and tour operator manager was in the club to support me.

“After six weeks in England I went back out to Greece: I had unfinished business and wanted to finish the summer season.

“Nothing is impossible and the only limits you have in life are the ones you set yourself. If you work hard and stay focussed you can do it. Having one arm has changed my entire outlook on life and if you gave me the opportunity to go back to two arms I would choose this life every time.

“It’s about how you a adapt, about how you can make things happen, and you need passion too. That is the fundamental thing for you to succeed. If you think you can do it, you are right. If you think you can’t do it, you are right!”

THE @BRISTOL SCIENCE CENTRE Hundreds of interactive hands-on, multi-media exhibits, including a planetarium, brought science to life for Reach members and their

‘

MATT HOWES has already met Reach’s own star DJ, Cyrus, and neither of them regard themselves as disabled because they can do things so much better than most people with two hands.

‘

siblings when they visited the @ Bristol Science Centre. It was a brilliant morning’s outing.

There is no right or wrong way whatever works for you is the correct way

WINTER 2014

.

ISSUE 127

P09

.....MAKING FRIENDS AND HAVING FUN.....

P10

WITHIN REACH MAGAZINE

..... AND FINALLY, THE DINNER DANCE

P12

WITHIN REACH MAGAZINE

OUR NEW AMBASSADOR Frank Letch, who has just retired after 18 years as a trustee, has agreed to be an Ambassador for Reach - taking the message of our charity out to the public and flying the flag for acceptance of difference.

He has hit the ground running - as we have come to expect of a 70 year old who has just accepted a 7th term as Mayor of Crediton in Devon.

Tours of the UK and Ireland are already being pencilled in for 2015.

Frank grew up without the support of a family charity like Reach and when he joined it in 1996 at the end of a very full career as a secondary school teacher, dog breeder, husband and father of five, he brought a lifetime of experience, common sense, determination and vision with him. He chaired Reach for two years and has been an active trustee up until this year, playing a particularly important role in the lives of those children whose deficiency affects both arms.

In 1999, during his stint as chairman, Frank initiated Reach Activity Week for teenagers and older children. The Calvert Trust Outward Bound Camp was the Reach Millennium Project and he worked tirelessly at fundraising to ensure its success. His talks and demonstrations break down barriers and assumptions. Peeling potatoes with his feet, playing tennis, doing up buttons, driving a car - all in a day’s work. Oh but changing the oil filter in the car took two hours and he’ll never do it again! I suspect most two-handed people would feel the same.

I CAN’T IMAGINE TRUSTEE MEETINGS WITHOUT FRANK writes Georgie Johnson After more years as a Trustee, tireless supporter and fundraiser for Reach than I’m sure he cares to think about, Frank has decided that he is going to step down as a Trustee. When I first joined the Board in 2002, Frank was already (and I hope he’ll forgive me for saying so) Reach’s elder statesman.

His knowledge and experience have always been very important to everyone who has been involved with the charity over the years and his unique viewpoint, coupled with the ability to give sound advice (as well as engage in a good argument!) mean that he will be hugely missed at meetings.

It was Frank who came up with the idea of Reach Activity Week. This tremendous activity which has been so important to hundreds of Reach children over the years doesn’t just encourage them to socialise, push themselves and build confidence, it has now been running long enough to see those early participants returning as mentors and helpers to

NEW TRUSTEE PHIL ROBERTSON Phil Robertson worked for a major bank for 36 years. Most recently he specialised in working with businesses in financial difficulty to assist them to return to a profitable future. He took early retirement in August 2014 to concentrate on charitable activities.

He has been a member of St John Ambulance for over 40 years, starting as a St John Cadet and encompassing various roles including first aid duties, Divisional Officer and County Adventurous Activity Officer.

He is Group Scout Leader of a large Scout group, and leader of an Explorer Scout Unit. A qualified mountain leader he leads youth parties in mountain walking and navigation, wild site camping and survival techniques. Recent activities included leading groups in England, Scotland, Wales & Switzerland.

the next generation. I know that he is very proud – and rightly so - of RAW. Over the years that I have known Frank, I’ve witnessed him giving talks to children of all ages, answering questions however intrusive, interesting, or silly, with patience and good humour. At Family Weekends there will always be a gaggle of people with him, chatting and catching up. His language skills mean that he has made links with similar organisations abroad which has given Reach a profile beyond the UK. I should say Frank isn’t leaving Reach completely – indeed I think, and hope, that he will still sometimes attend our meetings. I know that he will continue to support the charity and will carry on fundraising and spreading the word as long as he is able. But as he retires from the Board, we all owe him a huge thank you for the time and effort that he has put into his years as a Trustee. We’ll all miss him tremendously.

VICE CHAIRMAN GEORGIE JOHNSON Georgie Johnson has been a Trustee of Reach on and off since soon after the birth her son Dan in 2001. Having had a stint as Chairman, she then had had a break from Trustee life until returning two years ago.

Based in Cheshire, she works running events for her local town as well writing on museums and heritage. Dan, now 13, is about to get his first myo-electric hand, so she spends a lot of time at the Specialised Ability Centre in Manchester while he learns how to use it!

“I am very pleased to be Vice-Chair, supporting Gary and working with the team of Trustees to promote the charity and ensure that everyone who needs Reach knows where to find us,” she said.

WINTER 2014

.

ISSUE 127

P13

WANT TO LEARN TO DRIVE.....?

Teenagers Meghan Walker, Samantha Bradmock, Serena Pickford and Aisha Noda can’t wait to get behind the wheel of a car – independence beckons.

“I’m 17 next month,” said Samantha, “And my mum is phoning around places.

We know we have to be assessed but don’t know how. “

.....YES WE DO!

Just outside the Reach conference hotel in Bristol was a man who could help Gary Albinson, a vehicle adaptations and modifications specialist from GM Coachwork Ltd in Devon. And he had good news for the girls: adapting cars to meet their needs would not be a problem.

Tales from the horse’s mouth

“What you tend to find is that for 99% of the people here who have a disability in an upper limb, there are five or six main products that will solve all the issues,” he explained.

These are some of the experiences of young Reach members who are now driving successfully:

“For people with a right arm difference - you know you can change gear and apply the hand brake so you are just looking at how you steer and use functions like windscreen wipers. There is a very simple solution for this.

Jenny Sands said: “When you apply to the DVLA you have to have seen two different doctors, one of them a limb specialist who referred me to a driving assessment centre and they told me what adaptations I needed.

“For people with left hand issues, you are looking at how you are going to select automatic and then you modify the gear box to be operated by button or keypad.”

Clara Price, who has just passed her test, said her doctor told her she didn’t need to declare her limb deficiency.

These are some of the adaptations on the market

Infra red and wireless controls for one-handed operation of a car’s secondary controls such as windscreen washers and indicators

Billy Terrell, 17, said he didn’t get assessed either.

“I went to the hospital and I got an adaptation as I already use a prosthetic. I have a right arm deficiency and use a ball and cup adaptation on the steering wheel. I didn’t declare any disability to the DVLA and my driving instructor wasn’t fazed”

Examples of electronic gear selectors, one with integral push button start and one just with gear selection

Urban Myth and Genuine Gem ‘Registered Disabled’ - There is no ‘register of disability’ as such in the UK and by declaring a disability in your licence application you are not going to be sent a parking badge – blue, orange or any other colour!

Reach bursaries are available from Head Office to help towards the cost of car adaptations. Decisions made within a month, so a swift turnaround. email: jod@reach.org.uk

P14

WITHIN REACH MAGAZINE

GM Coachworks builds minibuses for schools and charities, wheelchair accessible vehicles and adapted vehicles. “It can cost up to £3,000 to adapt a car,” said Gary, “I always advise people to buy an automatic rather than a manual car. It is easier to adapt an automatic and over the next five to 10 years manual cars will be phased out anyway.”

There is a significant cost implication depending on which arm is affected. People who need right hand side adaptations face costs of around £1,500 but people needing left hand side adaptations face bills of £2,500 - £3,000. For example a push button gear selector alone can cost around £2,000 – and that is on top of the cost of the car.

“I’m happy for parents to come to me for advice,” said Gary, “I can help them find the most cost effective way to adapt the car and point them to other car adaptation companies nearer to their home. There is no legal necessity for people to get assessed, but there are disability assessment centres throughout the country. Most people just use their own judgement and the driving instructors are just there to teach you to drive.”

Gary can be contacted on 01626 853050, email: gary.albinson@gmcoachwork.co.uk.

Reach Guide to Learning to Drive This will be required reading for every parent of teenagers approaching that magic birthday!

In a nutshell: Apply for a licence and put down the extent of your upper limb deficiency. This will trigger a request for a medical report to be sent to the DVLA. Then discuss adaptations with your medical adviser and someone like Gary, or go to an official assessment centre.

You may not need any!

Now the exciting bit - buy a car, any make, but choose an automatic not a manual. Get it professionally adapted to meet your personal requirements.

Find the most friendly and adaptable driving instructors

One parent’s experience “In terms of learning to drive, our advice from our positive experience with our son Ollie would be to contact a medic who knows your child, well in advance of applying for a provisional licence,” says mum Karen Douthwaite.

“Negotiate what they think will be required in terms of adaptations, if any, and then when the medic is approached for medical input by the DVLA, they are aware of the wishes of the young person, equally the young person is aware of what the medic is likely to suggest.

“Also finding a supportive instructor with an ethos similar to the young person seemed crucial.”

A POSTCARD FROM YORKSHIRE

I like meeting new people and overcoming challenges

The best activity was the Jacob’s ladder because we laughed so much!

The summer’s Reach Activity Week (RAW) was held at Carlton Lodge Outdoor Centre near Thirsk, North Yorkshire which specialises in adventure, learning and discovery and boasts a great long list of challenges from archery and canoeing to climbing, gorge walking, high ropes, kayaking and zip wire.

The 40 Reach 10-18yr olds were supported by six volunteer “grown-up Reach children” and everyone had an amazing time.

Feedback after the event was overwhelmingly positive. They loved the activities, particularly the kayaking and were keen to sign up for RAW in 2015.

But it wasn’t just the adventurous activities that scored highly. It was also the opportunity to make friends with people facing similar challenges, to learn from and support each other, and have a good laugh.

I just wanted to say a really big thank you for giving me the opportunity to be a leader again at RAW this year, I had such a brilliant week with all the kiddies, lots of great memories especially the ones of myself and Claire drenching the kids with water during raft building! Hannah Murphy (RAW adult)

I liked having other people to talk to like me and finding alternative ways to climb and do activities like archery

P16

WITHIN REACH MAGAZINE

I liked learning to do new things like tying my hair up

AND A DIARY FROM WALES I always look forward to Reach Tyncae.

This was going to be my fifth fantastic year. We arrived late on Saturday morning and I immediately ran to join the workshops.

It was great to see so many familiar faces, and a few new ones. The marquees had been put up, along with lights and tables so a huge thanks to ICY - Rhydian Wilson and boys group, Tregaron Removals - Glen Heke, Elvid Williams and Ian Thomas.

The workshops: Katie Bloxham had kindly made a stack of London baked biscuits for everyone to decorate. My favourite workshop was to make a kaleidoscope. Many thanks to Tony who not only provided materials for the kaleidoscopes but enthusiastically helped everyone put one together and gave an excellent explanation of how it all worked.

Also thanks to Windsor Glass, Swansea, who provided the silvered glass. I still have mine in my room.

Thank you to Jay Munson who ran the popular Lego and Mega Blocks workshop. Big shout out to Steve and Dawn who drove to Cardiff to pick up the Lego and Mega blocks that were generously donated. This allowed everyone to make something creative. Left over blocks will be kept for future years. Thanks for all donations, not forgetting Delyth Jones who always comes to help.

Saturday afternoon we headed to the swimming pool in Lampeter and then to the Leisure Centre, younger ones on the bouncy castle and space hoppers and the rest played football, basketball, rugby and table tennis.

Exhausted, we headed back to camp, where there had been so much rain that it was impossible for the cars to drive up the field so big thanks to Rob and Roger and the Land Rover for a tow up the field!

After a great BBQ, we were treated to a lesson in Welsh. It was Andy’s birthday so we sang “penblwydd hapus i chi” - happy birthday in Welsh. Thanks to Sian, Iola and Ewan for the inspiration.

Up early to the beautiful Llanerchaeron - an 18th century National Trust Welsh gentry estate. The service facilities were very interesting, preserved as they would have been in the 19th century with laundry and linen-care room, brewing facilities, butter and cheese making, preparation and salting or smoking of meat and fish, and preservation of fruits and vegetables.

We were treated to a sheep dog demonstration. The dog took his instructions mainly in Welsh, but some in English - truly bilingual! After a fantastic picnic we had a tour around the old house.

Thank you to all the Llanerchaeron staff who made us very welcome, especially Margaret Williams, Gillian Morgan, Dai Griffiths, Delyth and Glen the dog.

We then took part in the yearly quiz kindly written by Carolyn and Joseph - Our team came second,

well done to the winners - we are looking forward to your quiz next year! Jamie had brought marshmallows for toasting - they were delicious. I stayed up into the early hours gorging on warm marshmallows in chocolate digestives.

After the medal presentation and the group photo, my parents raced to get the tent down before the rain.

We said our goodbyes - it was the end of another fantastic year.

A few thank yous: Sainsbury’s - Welsh Community Grant, Chris and Monica Rose, Diana Hibbert, John and Alice Story and John Lewis for your generous donations. The Double Hotplate Grill and Bain Marie were kindly provided by Lee M Cowles of FastLine Cabs - Lampeter. Also thanks to Eli, Leigh-Jones, for so much help including food preparation.

Lastly - Thanks don’t say enough - to Rob, Dawn, Roger, Steven, Michael and William who put a tremendous amount of time and effort into organising and running this fabulous weekend for Reach children - I look forward to it every year and hope to see new and old faces next year.

Can’t wait, Diolch yn fawr,

Emma Hendry

THANK YOU........

For the £79 leaving donation on behalf of Teresa Collie from her friends at Rolls Wood Group

THANK YOU........

For the pain you went through with the ice bucket challenge! Thank you for £15 from Gary Twigg, in Holywell, £10 from Paul Moir in Ireland, another £10, £25 from Gary Southern in Devon, £5 from Edward Wolton, £10 from Andrew Stoliar for the North West branch, £5 from Stephen Edwards, £50 from Christian Alliard and £10 from Catherine Hewlett, braving the ice bucket on behalf of her godson.

THANK YOU........

For the donation of £10 from Peter Harris on behalf of his grandson who is a Reach member.

For the donation of £20 from Julie McLellan, from Chorley, whose great nephew is a member.

WINTER 2014

. ISSUE

127

P17

OUR INSPIRATIONAL YOUNG PEOPLE RHYS THE BOWLER HITS THE HEADLINES

Bowls-mad Rhys Davies from Pantiffynnon has never allowed his disability to get in the way of his dreams and he has been busy solving problems to ensure he gets to play. His determination has inspired a number of different people to come up with practical solutions to help him.

Technicians at the Artificial Limbs and Appliance Services Swansea, (ALAC) have developed a specially designed cup shaped bowling hand that will fit on his robotic arm and the Dinefwr Junior Bowls Club is installing a ramp and shoot system for him.

Rhys has been determined to play since the age of five. Already a competitive gymnast as well as a purple belt in Chi Kwan Do and an enthusiastic swimmer, he couldn’t wait to try out bowls.

Mum Sian said: “He was determined to play bowls. Obviously there were some hurdles to overcome so we approached the team at ALAC. They wanted to help so we came up with a design that could clip on his robotic arms. Rhys has never let his disability slow him down – he’s a typical seven year old who loves being active and we’ve never treated him any differently because of it.”

OLLIE UNICYCLES OFF TO OXFORD UNIVERSITY Congratulations to Ollie Douthwaite who has won a place at St Hugh’s College Oxford to read physics.

Ollie has been a Reach member since the age of two and he has benefitted from Reach activities over the years, in particular Christmas parties when he was younger and the Reach Activity Weeks as a teenager.

Having a partially formed right hand missing fingers has never proved to be an issue and he has often found a unique approach to doing things.

Take cycling for example. Although Ollie can ride a normal bike, he decided one day that unicycling would be worth a shot. He now owns seven unicycles and much prefers the feel of one wheel to two. When it came to learning to drive, he approached his surgeon who had recently extended the reach of his right hand through surgery and asked that he support his application to drive a car without adaptations.

Having found a suitably supportive driving instructor, Ollie quickly took to the driving experience and passed his driving test first time with just one minor fault.

The week after passing his driving test, Ollie achieved excellent A-level results and secured a place at Oxford. As ever, Ollie has thrown himself into all the opportunities open to him and has tried out different sports settling on playing Ultimate Frisbee, which he recently did at a regional tournament.

Oxford is typically populated by a huge number of cyclists, and has now welcomed a slightly eccentric but determined unicyclist to its streets!

HAVE YOU ORDERED YOUR FUNDRAISING PACK FOR ‘SLING FOR A DAY’

The Sling for a Day Challenge is a great way not only to raise funds for Reach but also to raise awareness of the everyday challenges facing people with an upper limb deficiency.

Get sponsored for doing tasks single-handed or for every hour that you manage to keep that hand motionless inside the sling; donate a penalty fee every time you have to use your sling hand, for example when driving cars! Set people a series of increasingly difficult tasks to perform for increased sponsorship.

Fundraising packs are available from Head Office containing a triangular sling donated by Reliance Medical, guidelines for taking part and posters to advertise the event.

P18

WITHIN REACH MAGAZINE

SINGLE HANDED GIRL POWER EMILY’S TOP TIPS Hi! My name is Emily and I was born with my left arm missing just below the elbow. Although my left hand is missing, I have a fully functioning right hand.

Bitten off by a shark....or born like it.... how to handle the subject socially So when I came to write this, I thought great! I knew if there was one thing I would excel in writing about, it would be relationships – I may have had a few – but I don’t want to bore you with all the ins and outs. So, I tried to think back to my first boyfriend, I think it was around year 6/7. It lasted two weeks.

I used to hide my arm up my sleeve whilst I was at school, I hated the way I was so worried about what boys thought of my appearance. Looking back, I realise how ridiculous it was to try to hide parts of myself because I thought it might impress other TOP TIPS people. I think the most important thing to remember Relationships is to be yourself!

My friend Clara told me: “I remember my ex boyfriend said that my left (little) hand was his favourite because it made me who I am.”

1: Be Yourself

‘

‘

I’m 20 yrs old and I have dealt with many arm related struggles throughout my younger life. I want to share my experiences, to teach (and hopefully inspire) those who are experiencing the same difficulties.

It seems silly that we have to go through all this effort just to initiate a relationship with someone, but it feels a lot better once the air is cleared.

2: Explain about your arm politely

wasn’t there! Luckily, I never realised.”

So, my number 1 rule is to be yourself. Luckily, I got over my anxieties 3: Have fun. Make a joke about and now I am comfortable wearing short it. You were born with it so sleeves, no sleeves - I’m pretty comfortable you might as well have with everything. I know some of you still worry, so here’s my number 2 rule: politely fun with it...right?

And Jennie said: “I’ve never had explain. a problem with dating at all. One funny moment I remember is a guy If you’re on a date with someone you’re meeting expressing a few months after our first date for the first time and they make a remark or stare, that he kept trying to hold my hand forgetting that it explain it to them – most people are just curious – then you can carry on with the date as usual.

One thing I’ve noticed about people’s reactions to my arm is that if you act awkward about it, they’ll feel awkward about it too. But if you make a joke or act naturally, then they will too. It seems silly that we have to go through all this effort just to initiate a relationship with someone but it feels a lot better once the air is cleared.

Here’s rule number 3 rule fun! Whenever I’m meeting notice my arm there is a double-take – so I tend to where the fun begins.

Lisa Carswell alias Cornish Maid is asking for all doll requests to be made via http://fbfdolls.org/.

Lisa makes dolls for Feel Better Friends and fbf has agreed to incorporate Reach dolls into its requests. Lisa has already raised £300 for Reach.

P20

WITHIN REACH MAGAZINE

(my favourite rule): Have someone new and they chance they might stare or make light of it. This is

For example, I’ll make a joke about it or tell people it was bitten off by a shark. Recently, I was out in town with my boyfriend and someone asked about my arm. I made up an elaborate story of a horrific shark attack whilst my boyfriend hummed the Jaws theme tune next to me. It’s safe to say, the guy was startled. When I come to justify situations like that, I always think to myself: I was born like this, it’s not going to change, so I might as well have fun with it…... right?

Emily Tisshaw

ONE-HANDED HORSE POWER Ok - the troopers from the King’s swords. But the important thing is high speed with just one hand on it, cowboys do it, polo players do

Troop Royal Horse Artillery pictured here on ceremonial duty are carrying that they are riding large powerful horses in a stressful environment at the reins. So this is about riding one handed. Cavalrymen and women do it - this method of riding has a long, long pedigree.

I spoke to the King’s Troop Master Farrier, Staff Sgt Alan Bould, to find out how it is done, and there are no military secrets here. It is based on the most traditional of riding techniques used by all top riders today.

“When I first joined the Army I didn’t know how to ride,” said Alan, “I learned everything through You go on courses within the unit and learn how to ride normally. The key is to have a horse right temperament and character. This is vital for the rider’s confidence as if the rider is nervous will sense it. So for children it is important they are paired with the right size and type of pony given one that is too big.

the military. with the the horse and not

“The main thing is how the rider achieves balance. At the beginning, people tend to rely heavily on contact with the reins to keep their balance. You tend to tip forwards and you need to sit well back. You slow the horse down not by pulling the reins but by using your seat. It is how you distribute your weight.

“The reins are there as an aid to get the message across but the important command comes from your seat. When you transition from walk to trot to canter you shorten the rein but the contact must be soft and subtle and steering is not done with the reins so much as the legs. You can steer a horse without touching the reins.

“I have seen a double arm amputee competing to a high level at Olympia. Parents need not be worried. You control a horse through your voice, your body position and your seat. The muscles in a horse’s neck will always be stronger than your arms, so you cannot rely on pulling the reins.

“To shorten the reins one handed it is easiest to have a noose around the reins that you can slide up.”

I told him about Alice Reins, the looped reins designed by a Reach rider and he was very impressed! Alan is happy to talk to anyone concerned about riding one-handed. He can be contacted at alanbould@yahoo.co.uk.

MATTHEW COMES THIRD IN THE PARACLIMB SCOTLAND 2014 Matthew Phillips, 13, scored full marks for his boulder and climb competitions at the first Scottish ParaClimbing Competition at the Edinburgh International Climbing Arena in Ratho, and was picked for the final six in the Super Final climb, coming third overall.

Matthew started climbing at taster sessions, rock-climbing on the beach on holiday and at parties but started training seriously about 18 months ago in Guildford with coach Robin O’Leary.

The competition consisted of three boulder problems and three top-roped climbs. The Chief Judge stressed that the most important thing was to have fun. “Fun is one thing that has struck me about these competitions, its a very friendly and supportive atmosphere with other competitors encouraging those climbing and even offering advice,” he said.

He scored full marks for the first two boulder problems and then had a small break for a BBC Scotland interview before successfully tackling the final boulder.

The climbs went well and Matthew achieved maximum points - but so had other climbers, so the Chief Judge announced a final climb to sort out the winners. A list of six names was called out from the 31 competitors and Matthew was one of them. He was by far the youngest in the final and to cap it all he drew the lot for first to climb.

“It looked daunting with several serious overhangs,” he said. “It was clearly going to sort the six of us out - a fitting Super Final climb. I managed the first section without too many issues but a leap to a hold just above the first overhang proved too much. I finished with a score of 35. I achieved joint third place in my category and third overall.”

WINTER 2014

. ISSUE

127

P21

BRANCH NEWS

SCOTLAND

The Scottish Branch Family Weekend 8-10th August at Ardeonaig near Killin. A great time was had by all.

WEST MIDLANDS

Ash End House Children’s Farm proved a great success on 9th November. This is a fantastic farm with loads of fun packed things to do, from holding baby chicks to sitting on a pony.

DANIEL STARS IN A PUBLICITY CAMPAIGN CLOSE TO HIS HEART Daniel Tennant, aged 5, whose deficiency affects both arms, is finding his transition from home to school has been made as easy as possible - partly thanks to his school’s attitude towards his toileting needs.

Daniel already has a Clos-o-Mat automatic (wash and dry) toilet with a Rifton paediatric support over the top, at his home in Bathgate, West Lothian. His local primary school, Windyknowe, decided that in order for him to feel like all the other pupils when he started school this autumn and be as independent as possible, he needed to have similar facilities there too.

On the advice of Lothian NHS Trust Occupational Therapist, Julie McGuire, Windyknowe Primary School has had the same equipment installed and maintained by Clos-o-Mat. Daniel’s model is called the Palma Vita, which can be used as a conventional WC but also has built-in douching and drying, so there is no need for a Reach member or their carer to use toilet tissue. It also means the user is consistently cleaned to a hygienic standard. The Rifton fits over the toilet and is fully adjustable in both height and back support so a child is fully supported whatever their size. Daniel is now the star of the company’s advertising campaign.

“The Clos-o-Mat gives him toilet independence at home and at school,” explains Daniel’s mum. “Windyknowe has been fantastic in easing Daniel’s transition. As a result, he is enjoying school and feels just like everyone else as the Clos-o-mat allows him to go to the toilet on his own, the same as everyone else.”

Clos-o-Mat is Britain’s biggest supplier of toilet solutions to maximise people’s independence and dignity. It also offers in-house sales and technical advice, supply, installation, commissioning and after -sales service & maintenance. Tel 0161 969 1199; www.clos-o-mat.com; email: info@clos-o-mat.com.

P22

WITHIN REACH MAGAZINE

THANK YOU! The Entertainer toy shop raised a magnificent £4,256 through its Charity Loom Band Fund Raising Campaign

THANK YOU! inspired by a talk given by Frank Letch

Angus & Fenella Dixon donated £10.00 from the sale of their play kitchen

Hall Mead School, Upminster, donated £49 raised by at least one form group that had chosen Reach as its charity for the year

John Baxter from Carshalton donated £275, proceeds of a charity concert by Josatina (www.josatina.com)

Claire Lacy from Ponthir raised £127.53 at her Yard Show

Roger and Dorothy Chilton (Josh’s grandparents) raised £600 at Tettenhall fete tombola, car boot sales, and Tumble Tots pirate week

Jenny and Barry Staples from Lee-on-the-Solent Art Group raised £128.13 from the sale of art works at a fundraising event in the garden of their local church hall in the High Street.

Companions of Chingford Chapter donated £250; Matt and Claire Philpin (Master of Chingford Lodge) whose son Sonny is a Reach child, donated £127 and Chingford Lodge donated £250 Mr and Mrs G Deacon from High Wycombe donated £50 in lieu of birthday presents and Caroline Arthur donated £10 in lieu of a birthday present Miss Trish Lapworth for Heathrow Customs donated £10 Rotary Club of Exmoor donated £100 after being

THANK YOU! The Lewis family has donated £521:78 collected at the funeral of Reach member Keri‘s grandmother. “My mum, known as Nanny Pam to her grandchildren was the kindest, most supportive, loving, caring, funny, admiring Nanny any child would wish for,” wrote Keri’s mum Katrin.

“We are all devastated by her sudden, unexpected loss. Keri, my 11 year old daughter is a member of Reach and she is the most independent, determined, amazing girl who will try anything that her siblings do (and often succeeding) She is doing fantastically well at school sings in the choir, plays the drums, rides our horse, swims well, plays netball and enjoys outdoor activities. She is an inspiration and has a heart of gold and the biggest smile, just like her Nanny Pam. “Nanny Pam knew how much we all loved to go to Ardeonaig Outdoor Pursuits Centre next to Loch Tay every year for a fun, challenging weekend with our many friends at Reach Scottish Branch – it has helped us all – Keri, us as parents, and her brothers and sister. So she would definitely be happy if she knew that her donations were helping Reach Scottish Branch to continue its helpful and inspiring role.”

Reach volunteer Rebecca Hooley has been granted a Foresters Scholarship Award for its 140th Anniversary, with a donation of £140 to Reach Joan Richards donated another £13:45 in memory of Jamie’s dad Edward. Joan said: “We joined Reach in 1988 when Jamie was born and this is a small but very sincere thank you for all the help and support we received while he was growing up. The final total should now be £300.”

THANK YOU! Sam and Sheila Humphreys donated £100 in celebration of their grandson Lewis Humphreys’ 11 birthday saying: “He is still doing well with his football, also cricket.”

And Lewis also wrote us a letter: “Dear Reach, With 2014 being the 100th year since World War One, my wonderful granddad Sam Humphreys has donated £100 to Reach in remembrance of the First World War. My generous grandparents donate money to Reach each year and support me in everything I do.Thank you Granddad and Grandma, Yours sincerely Lewis Humphreys (aged 10).

THANK YOU! The Woodlesford Triangle near Leeds raised £1,650 for Reach at its annual naked waiters ladies night and decided to split the proceeds between CLDF and Reach as they knew two children who had received help from the charities. Leanne Swift is a member of the group and her daughter Lily Mae Swift is a Reach child. Organiser Jenny Roberts said: “We love holding the event each year and although it can sometimes prove hard work it’s nothing in comparison to the work yourself and other great charities do for these families.”

WINTER 2014

.

ISSUE 127

P23

Electric Hand 2000 for Children

© Ottobock · UK/FL/TECH/0563

Ottobock recognises that children are precious; functionality and flexibility are important features to each individual child.

The Electric Hand 2000 incorporates several impressive features combined with a natural shape and excellent contours giving a very natural appearance.

Otto Bock Healthcare PLC 32 Parsonage Road, Englefield Green, Egham, Surrey TW20 0LD T +44 (0) 1784 744 900 · F +44 (0) 1784 744 901 · bockuk@ottobock.com · www.ottobock.co.uk