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

I have a ‘SO WHAT’ attitude. I’ve got this arm,

‘SO WHAT!’ It’s

Ability not disability that


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:


National Co-ordinator: Jo Dixon Reach, Pearl Assurance House, Brook Street, Tavistock, PL19 0BN Tel: 0845 130 6225 Email: Office hours: Monday-Friday 9am-4pm website:

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. November


Editorial deadline: Material for inclusion in the SPRING issue must be sent to the editor by 31st March 2014

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 is £30. You will receive a four monthly magazine plus you will be given access to the ‘members only’ area on our website: Reach Insurance Reach carries an insurance policy which covers the good arm of affected children who are UK citizens, against accidental loss. The good arm is covered against permanent total disablement in the sum of £50,000. This cover benefits members and is effective from birth to 65 provided membership is continuous. Details are available from HQ. Reach Publications We have a book which is available to buy called ‘Shared Experiences’. These stories are a collection of real life experiences told by Reach members which are shocking, saddening, funny, inspiring and captivating. All in all a brilliant realisation of life with an upper limb deficiency.

Follow us on twitter: @reachcharity Facebook: Within Reach magazine is printed and distributed by Branded Media Ltd, Unit A, Lutyens Industrial Estate, Bilton Road, Basingstoke, Hants RG24 8LJ






East Anglia Branch Co-ordinator: Carl McGranachan Tel: 1603 810251 East Midlands Branch Co-ordinator: Linda McMeekin Tel: 01536 420680



Eire Branch Co-ordinator: Chris Creamer Tel: 00-353-18354953 Essex, Hertfordshire Branch Co-ordinator: Steve Gunn Tel: 07787 437998 scgunn01@gmail. com Gloucestershire Branch Co-ordinator: Katrina Bailey Tel: 01242 575698 katrinajanebailey@

Northern Ireland Branch Co-ordinator: Lynne McKinley Tel: 028 9066 7143 lynne.chalmers@


Northern: Cleveland, Durham, Northumberland, Tyne & Wear Branch Co-ordinator: Joanne Hodge Tel: 01670 760622 joanne.hodge10@

West Midlands, Shropshire and Staffs Branch Co-ordinator: Zaqia Raja Tel: 01212 416960


Devon, Somerset Branch Co-ordinator: Helen Gribble Tel: 01626 833309


Buckinghamshire, Oxfordshire Branch Co-ordinator: Sarah Pratchett Tel: 01628 523514 sarahpratchett@

Kent Branch Co-ordinators: Kirsten Eden Tel: 01892 853731 kirsteneden1@yahoo. Clare Vosloo Tel: 01435 873846 / 07748 987724 dcvosloo@tiscali.

Yorkshire - North and East Branch Co-ordinator: Tracey Dennison Tel: 01482 862966 traceynalec@onetel. com








working together with

Wessex: Dorset, Hants, W Sussex Branch Co-ordinator: Kate Meneghetti Tel: 01420 520996 wessexreach@live. com


Berks and Wiltshire Branch Co-ordinator: Joanne Taylor Tel: 07780 663773 joanne@yondra.





Northwestern: Cheshire, Lancs, Manchester, Merseyside Branch Co-ordinator: Cheryl Danson Tel: 01254 854770 Scotland Branch Co-ordinator: Stacy Roulston Tel: 01575 570989 reachscottishbranch@ South Wales: Dyfed, Gwent, Glamorgan Branch Co-ordinator: Melissa Beesley Tel: 02920 532891 melissabeesley@

Yorkshire South and West Branch Co-ordinator: Klair Whitworth Tel: 01142 514038 klairw03@hotmail. com


to all those co-ordinators who are standing down this year. Jill Hamilton and Paula Zeller have looked after the South West and Midlands for many years, giving sterling service to very large areas and arranging many well attended gatherings. Jenny Grace has coped with East Anglia for many years. Simone Carter, Herts and Nikki Evans have also worked hard for Reach. All your efforts have been much appreciated. Thank you on behalf of all the Reach families that you have helped over the years. Do please stay in touch Volunteer branch co-ordinators are still needed for Cornwall and London. This is a very rewarding role. Please get in touch with Jo Dixon on: if you would like to volunteer.

WINTER 2013 . ISSUE 124


WELCOME TO OUR WINTER ISSUE - NO 124 Gosh! It has been a busy summer and autumn for Reach, with only a few weeks between the Reach Activity Week ending and 400 people joining us for the family weekend in Leeds! There are some important ‘thank you’s’ for people who were vital to the smooth running of the Activity Week. Firstly Claire Hermon and her team of seven amazing, energetic volunteers, who spent seven days supervising 42 children aged 10-18, some of who had never been away from home before. The activity week is full of highs but we really appreciate how hard our volunteers work. We are busy planning next year’s, and we hope that online booking forms will be available in early February 2014. At the Family Weekend in October, Bernie McDonnell and her team of fantastic volunteers provided the children with such a diverse and fun range of activities all day on the Saturday. We also have an amazing group of Reach trustees who worked tirelessly over the weekend behind the scenes and prior to the event to help it run so smoothly. Many thanks to you all. Finally thank you for taking the time to feedback your comments from the Family Weekend. This year we used an online survey, and the winner of the random prize draw for completing this was Jill Hamilton, who coincidentally is our retiring South West Branch co-ordinator. A small prize is winging its way to Jill! As WR goes to press many branches are planning Christmas get together and we look forward to reporting these in the first edition in 2014. I wish you all a Happy New Year. Jo Dixon, National Coordinator

Key dates

Reach 2014

REACH MAY BALL 10 May 2014 Woodbury Park Golf & Country Club, Exeter

REACH ACTIVITY WEEK Sat 2 August - Sat 9 August Carlton Lodge, Thirsk, N Yorks Prepare for an amazing week of challenges and achievements for Reach members aged 10-18. Activities include archery, bouldering, bushcraft, canoeing, caving, climbing, gorge and hill walking, high ropes, kayaking, orienteering, raft building and zip wires. Contact HQ for details. 0845 130 6225

REACH FAMILY WEEKEND AND AGM 24 - 27 October, The Marriott Hotel, Bristol Booking will open June 2014, but please put the date in your diary now!



TYNCAE CAMPING WEEKEND, WALES 23 - 26 May, 2014 The annual Tyncae weekend is brilliant - give it a try this year. It is a really relaxed family orientated camp run by great Reach friends, the Davies, on their smallholding in Wales. Over the years, activities there have included crafts, canoeing swimming, a fire service display and BBQ. There is lots for all age groups to enjoy. It is a wonderful opportunity to make and meet up with friends in the beautiful Welsh countryside. Contact HQ for details. 0845 130 6225

CONGRATULATIONS to Reach ambassador Laura Hamilton and her husband Alex on the birth of their beautiful baby boy, named Rocco.

Reach Board

THE CHAIRMAN I have just come home after our Family Weekend in Leeds and I know that effectively puts the close on 2012/13 and we start a new Reach year, writes Nigel Tarrant. In contrast to last year, when there was all the uncertainty of employing a new national Co-ordinator, not knowing how much information we could salvage from our old systems, moving offices, launching a new website and a new platform for our internal communication and with no visibility on our financial situation, this year we can plan properly and make sure that we achieve the targets that we set ourselves. Listening to the feedback from the Branch Co-ordinators’ meeting on the Sunday morning was helpful for our planning this year. Nearly thirty members stayed on to discuss what we should be thinking about. There was a lively session on organising regional events for the children to fill the gaps in our calendar. Riding, cycling and outdoor activities to bring them together seem to be popular but we should also try to support locally based family activities. Where Branches are struggling to attract enough support we will consider opening our events to members of other support charities such as Hemihelp who shared the Activity Week this year and Steps for children with lower limb disabilities. We with has the that

continue to encourage closer connections with other charities dealing disability and children both in the UK and abroad, and as Frank made it clear that, as ‘Reach grandad’, he intends to stand down at next Family weekend, he has a window to go out and make sure those relationships last, once he has taken a lower profile.

As ever, what we can do will depend upon the success of fundraising activities, and the role of branches in this area was raised. We need to tailor our expectations, but it is through the branches that the message about what Reach does, gets spread to friends, relations and the wider public, and then people come forward to raise funds for us in many different ways. We need to make sure all Branch Coordinators have information and materials to enable them to encourage this and make fundraising for Reach easy. This year we will arrange a training day for Reach members who feel able to act as mentors and contacts for new members, so that we know that the message being given out is consistent and helpful.

HAVE YOU UPDATED? This is a plea to all members to UPDATE their contact details and Membership Subscriptions. We are moving to electronic communication, bringing Reach into the 21st century! So, if your details on our database are out of date, you will miss notifications of events and opportunities. Please email us at reach@ to inform us of changes to email addresses, phone numbers etc.

We were reminded of the role of Branches in Scotland, Ireland and Wales. In those areas, there is a strong nationalist feel and we need to support those branches and make them feel that being part of the bigger Reach has more advantages than disadvantages. When the Board meets in November we will be inviting people who have expressed an interest in getting more involved to join us. That meeting will be to review the outcomes from the AGM and to plan and set objectives for the coming year as well as approving a budget. There is much to build on after a very successful weekend. Our thanks to all of the 400 plus people who supported the event in Leeds. Nigel Tarrant

Siân Brooks 15 Paullet, Sampford Peverell, Nr Tiverton, Devon Tel: 01884 820223 email: Julie Detheridge 20 Brunswick Road Earlsdon, Coventry, CVI1 3EX Tel: 02476 251185 email: Tania Hannaford Yewsdene, Bottom Road, Radnage, Buckinghamshire, HP14 4EQ email: Dominic Hannett 29 Milton Road, Stratford Upon Avon, Warwickshire, CV37 7LZ Tel: 07894 000267 email: Claire Hermon 44 Thorney Leys, Witney, Oxfordshire, OX28 5LR Tel: 07764 947256 email: Georgie Johnson 4 Queens Rd, Wilmslow, Cheshire, SK9 5HS Tel: 07770 931231 email: James Jones Flat 8, Elizabeth Court, Park Terrace, Bognor Regis PO21 2NH email: Frank Letch 2 Butts Park, Crediton, Devon, EX17 3HE Tel: 01363 775739 email: Gary Phillips Vice Chairman and Child Protection Officer, 2 Walden Cottages, Westwood Lane, Normandy, Guildford, GU3 2JB Tel: 07044 080140 email: Nigel Tarrant - Chairman 64 Embercourt Road, Thames Ditton, Surrey, KT7 0LW Tel: 020 8224 0961 email:

THANK YOU to Mark Saunders of Spiny Fish Designs who has given his time to designing the Reach flyers and May Ball posters. Mark works with Sian and is a very talented designer:




THE REACH FAMILY WEEKEND featuring 400 Reach members from new-borns to grandparents; stars of stage and screen; Paralympians and top professionals from the cutting edge of medicine. The theme that cropped up all through the conference was one of Options and Choices

Dr Fergus Jepson Describing the changing landscape of disability benefits and procurement, Dr Jepson said: “Up to this year, funding was by Primary Care Trusts and they decided the budget, so it was different for every centre. Funding depended on the clinical leadership of the units so there was quite a significant postcode lottery. “The idea now is for core NHS funding. This should give uniformity and access to the same level of funds and prosthetic provision across the country. “And they are talking about reclassifying the centres as Tertiary, Standard and Satellite. There will be a national tariff but the big thing is that you will have choice: funding will follow the patient, though not until 2014, if then. The tariff will give a defined amount of funding for each individual. “We felt it should be nationally commissioned so everyone got the same level of care and that was accepted by the Government. There is a new National Clinical Referral Group and I chair the sub group for multi-grip hands. The future of multi-grip hands is very exciting but they are not available for children



Prof Simon Kay

The speakers were: Jenny Sands, a Reach member; Tammy Barrett, a one-handed paediatric nurse; Dr Fergus Jepson, Consultant in Rehabilitation Medicine; Prof Simon Kay, Consultant Plastic Surgeon; Alex Brooker, Reach Ambassador and TV star. You can watch videos of their inspirational speeches on, or read a short report of what they said here. yet. Some of them have 11-12 motors and computer chips and batteries that would have to be shrunk down. Companies developing them should have something to show in two or three years time. “When children reach 11 or 12 years old, the size discrepancy is not so great. Libyan children were fitted with small adult versions and had very good functionality. Children just need to grow to a point where the weight and size is feasible. “Complex hands have been available for the last five years but has the NHS adopted them….there is a huge difference between centres, both in the number of suitable patients and in the very small percentage who use myoelectric hands. “People often live full independent lives without any prosthetic. Some prefer single grip to multi-grip because of the better strength of grip. However, we are not adopting the new technology consistently. The important change is that patients will have the choice of which centre to go to. Basically if you can use a complex hand and it improves your life and makes you more independent, they you should get it. Some centres start training people from the age of two! “If you are not happy with your current service, then tell me or your GP and they will tell you where the other centres are or Reach will tell you.”

WE ARE ON THE BRINK OF TRANSPLANT DEVELOPMENTS: PROF SIMON KAY “Function is a hand is partly to do with appearance, he said. “The hand and face are very analogous and parallel with comparable functions. A cosmetic hand may mask function for one-six year olds but at fivesix, children start to be self aware. They are worth a try, especially as a bridge into a new peer group or a new environment. “Functional hands can be bionic or cybernetic. The bionic drawback is that they need power, and batteries can run out. They need servicing and they whirr. There is no pressure sensitivity. Two sensors pick up muscle signals but it is a good area of development. “Cybernetic prosthesis use signals from the brain to the muscle surface, the spine or any remaining nerves but it is difficult to identify sensations and learn where the sensor is. Progress is being made in this area thanks to Afghanistan. “Hand surgery can be effective: toe to thumb is effective and we pioneered that here in Leeds. Put the thumb on, and a child uses it. Children are extremely resilient and adaptable. Whole hands – we did the first hand transplant this year. The advantages are cosmetic, warmth, sweat, self healing, sensation and mobility but it comes at a cost. The drugs have side effects. It took us three years to write the protocol. There is also the issue of physical mismatch. “Ethics is a big argument. On the plus side there have been terrific advances made in drug therapy and there is very good motor recovery. At the moment

THANK YOU to everyone who filled in the feedback questionnaire. It is so helpful to know how you felt about the Family Weekend, and we will use your comments to help make the whole experience better next year, for example by addressing your concerns about the catering. On the whole, our new venture into online booking was a success, and we hope it will work even better next year, with a more simplified, user-friendly format. The 2013 venue - the Marriott Hotel in the centre of Leeds - scored well for location, quality and facilities, so a thank you to all the hotel staff who gave such a warm welcome. All our speakers went down really well, so thank you to them, and also to the teams of childcare staff, entertainers and craft leaders who kept a diverse range of children absorbed while the families attended the conference. It was lovely to see grandparents as well as parents attending. The children’s activities scored consistently high ratings and there were lots of smiling faces. The organisation of the weekend, and especially the friendliness of the event, was recognised in the feedback, and as we are a family orientated charity, that was especially appreciated. It was particularly interesting that by far the most important aspect of the weekend according to the survey, was the opportunity for Reach children to socialise together. As a significant number of families were attending the AGM for the first time, this must have been a real highspot for their children.

Parents need to give children the opportunity for prosthetics or surgery and to repeat the offer. A decision made at 4 or 6 will not necessarily be the decision of that child at 11 or 12.

there is no ethical approval for below the age of 16 but we believe it will be possible for children even if they have not had a hand. I am really conscious of the resilient child. If something bad happens you either let it define you, destroy you or strengthen you and these become very special children. It will be five or six years before we move in that direction and I hope you are all on the donor register.”

THANK YOU FOR YOUR KIND GENEROSITY Belfast Pensioners £25; Mrs Le Mareschal’s funeral £30; RFS Services Amputation Training Day £25; Buttons coffee morning £25; Halifax - Rose - Charity Glitter Ball £1,265.19; Rose - Aaron Services Ltd £75; Mr Shackleford – Prudential RideLondon 100 £115; Lewis Humphreys – Granddad’s donation for goals scored and 10th birthday donation £169; Mr Trewhella £25; £325 in memory of Betty Evans; Rilee Parker’s christening £165; Mr Dilnot-Smith - June Cycle Event - £100; Lou Reid - Le Sandwich Weekend - £1,000; The Pilkingtons – dancing show £1,200; Mayfields WI raffle £39; Mr Longfield £10; RC and J Bailey donated £145; Saxton Cricket Club – fun day £400; Galemain Engineering £250; Claire Piper – mile open water swim £225; PA Advocacy £100; Ladies in Business via Claire Cashmore £190; Button £25; Grandparents of Billy Terrell donated £150; West Wight Sports Centre sponsored swim £187:50; Davies - 31 mile sponsored canal walk £351; Maggie Bellow £250; Derwent Lodge School - cake sale £54:24; Katrina Bailey, Gloucester Branch £1,000; Claire Parkin charity walk total £125; Jelf total £105:75; Bucks/Berks/Oxford Christmas Party £97; Club Weekenders – Quiz night £45; Castle Inn, Lydford - charity box £5; Mr Berry – Glasgow half marathon £261; Fore Business - £55; Ms Evans – Singalilia Ridge Charity Trek £205; ABC First Steps - toast sale £95; Jelf Group - in lieu of Christmas cards £65




THE CONFERENCE Prof Simon Kay and Dr Fergus Jepson are quite right: Reach children, Reach adults, ARE special. Jennie’s first speech to a conference hall full of people, the story of Tammy, the amazing journey of Alex, these tales of life lived to the full despite - sometimes because of - a limb deficiency, are extraordinary and inspiring. JENNIE SANDS has been a member of Reach since birth. Now 20 yrs old, she is training to be a primary school teacher. “My right arm ends just below the elbow,” she said, “And I had four lots of surgery and two skin grafts on my left hand before I was five. I don’t remember anything about them and when I started going to school I never had problems making friends. “It’s partly because I am different – people come up to ask questions and it was actually easier for me than for my sister who has two arms. I have had one or two instances of minor bullying but no more than a stare or a comment. A boy called me ‘dolly arm’ but I did hit him with my prosthetic arm. You learn to shrug these things off. Kids will always find something to have a go at. “At secondary school, after a few weeks, my mum asked me if I was having any problems but I have far more positive memories about beating people in basketball. My mum came in and talked to the children and also my occupational therapist. After five minutes the kids figure things out and move on. “In an academic setting I have had to fight against the support that I don’t need and to push for the support I do need. Now I am at university I can say what I need. I am stubbornly independent but I think that is necessary. I don’t want to use my arm as an excuse and I never will. “One child said to me ‘I have never met a pirate before.’ Another asked if my arm was in the toybox? Had I lost it? Did it hurt? When would it grow back? At university it was more ‘have you got a prosthetic arm and can I play with it?’ “People’s ignorance always amazes me. I was always put in the lowest group in PE but socially people don’t normally notice, especially when I wear a winter coat. My boyfriend forgets about it. “I have done rock climbing, surfing etc – the chances are that I have given it a go such friendship in Reach. I have a SO WHAT attitude. I’ve got this arm, SO WHAT!

and I have had

“I have never liked prostheses as I find them heavy and sweaty and I have never felt the need for one. When I was younger they forced me to wear one but it’s not for me.”

Dom Hannett

The Reach shop



Gary Phillips and Nigel Tarrant

INSPIRATIONAL STORIES Tammy Barrett: Inspired to change perceptions of difference

Tammy was born with half a left arm and her parents were determined she should lead a normal life – and how! After having three children she has now embarked on a career as a Paediatric Registered Nurse….oh, and in her spare time she is an international swimmer with new ambitions to become a triathlete.

“I wasn’t registered disabled and that is very important for my mum and dad and for myself,” she said.

“I regard my disability as an advantage. I’d rather NOT be Jo Bloggs average!”

“It is very important for the NHS to plug artificial limbs. I had them from the age of two and I was encouraged to wear them. Mum and Dad were very determined to make me learn to do things like tying my shoe laces and I started learning to swim very early. My mum trained as a swimming teacher so she could help and we joined the local swimming club. My brother and sister joined too and we all went on to compete in swimming.

“Yes I encountered bullying along the way but I brushed it off and I had my most fun at secondary school. I did a skiing trip and when I was 14 or 15 I started to reject artificial limbs because they were uncomfortable and heavy. I tried the hook and the mioelectric but it was heavy so I said I wanted a cosmetic hand. “I was determined to play music and taught myself the piano. I was never a shy person and I didn’t want help. I went to work in London running help desks and managing a team until I had my three boys and I decided I liked having children around. “I took an access course for nursing. I met the most resistance applying for university but I persuaded them I could be an effective nurse and work safely. I got a place at Greenwich. Some things had to be changed, and the University Board and Nursing and Midwifery Council had to approve things but this was done with the help of a very supportive tutor who believed in me and my philosophy. “She helped me obtain my diploma in nursing and I now work on a paediatric ward at Tunbridge Wells Hospital. In my swimming training and my work, changes have had to be made, but these changes are important so that people with deficiencies can go ahead. I am now a Royal College of Nursing representative and I can help other nurses who need changes so they can train and work too. “I want to change people’s opinion of disability and change policies and procedures to incorporate people who are different. I am hoping to get involved in university teaching, educating students about disability.”

Jan Douglas argues the case for prosthetics Aged 76, slim, spritely and oozing quiet confidence and a certain steely determination, Jan was one of the elder statesmen at the AGM. No Reach when she was a girl. No support for her parents. Her principal concern was the very noticeable absence of either cosmetic or functional prostheses worn by the younger Reach members. Jan, now retired after a career as a teacher and union official, has worn an arm with a shoulder strap activated grip since she was a young woman. “From my experiences, I feel it is very important that the children have arms and use them because we learn the majority of what we need to do when we are young,” she said. "When I first had my arm I used to take it off to do things which I had learned to do without it. Later when I went away to college, I wished to keep my arm on, so I had to learn afresh and this was not easy. "As we become older, aches and pains develop if we misuse our bodies. We do misuse our bodies by being one-sided. By the time you reach my age, you really begin to feel the strains. It is that much more difficult to keep going. "When I was young, my mother expected me to get on with life. No concessions were made. I was only to be allowed an arm when I grew up. At a school-leaving medical when I was 15, the doctor suggested I should have one. I had become self conscious of my short arm by this time, so was thrilled to receive the first artificial one six months later. This and all those which have followed have been worn all day, everyday bar about two, ever since then! "I was offered a myoelectric but decided against it, so have stuck with the shoulder operated arm and a cosmetic one, which looks a bit more elegant, for 61 years. The limb service has served me very well."




THE AMAZING, ONE-OFF, ALEX BROOKER There is no-one quite like our newest Ambassador, that TV sports commentator with a difference, Alex Brooker. After delivering a very moving, no-holds barred, account of his life overcoming multiple disability issues during the conference, he held the floor as a brilliant entertainer during dinner. Alex needed operations to give him opposable thumbs on his hands and his leg was amputated as it had no fibia. “My dad was always realistic,” said Alex. “He said: son, you are going to have to work hard at school as you are not going to be a builder. I was very lucky when I was at school. I wasn’t bullied as so many ginger kids are. But it had its moments.”

Alex described his first swimming lesson at grammar school when he was abandoned in a canoe up one end of the pool while the other boys were taught

swimming. “My friend told the teacher to look at the swimming badges on my shorts! My only problem was I needed more time in GCSEs.

A lot of disabled people say it is great to see me on TV as it shows that disabled people are just the same as other people.

“I always wanted to be a football journalist - I wanted to be paid to watch football. I went to Liverpool John Moores University to do journalism and loved it. I immersed myself seamlessly in university life. I didn’t need too much help and I didn’t feel conscious of my disability. I went to work as a junior footbacll reporter on he Liverpool Echo and then got a job with the Press Association but I fell out of love with sports journalism. I tried PR but was told I couldn’t communicate with mass audiences and I was rejected by Sky Sports. PA said I should try out all the sports on a Try Out Sports Day. I got to the final in the table tennis tournament. I tried the shooting and it was the best I’d ever done and PA said go to the next stage and it was brilliant. I was with the GB team. “Then suddenly I became extremely conscious of my disability. I lost all of my self confidence within a fortnight. I split up with my girlfriend and quit the team and had counselling. That November I auditioned for Channel 4. They wanted disabled journalists interested in sport. I went to ITV for three months of very hard training but they said I wasn’t ready for live TV. They got me back for one day’s reporting on the Paralympics Opening Ceremony and then I got into the Last Leg. I met the guy producing it and made him laugh. The Paralympics raised the profile of disability – they had an impact on me. I loved doing the Last Leg and fortunately I have managed to keep going since then.”



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And here are just some of the stars who made the whole weekend happen






contains everything you need to book yourself in for a ball of a time at Woodbury Park Hotel, Exeter, thanks to the hard work of party organiser Sian Brooks. This is the key fundraiser for Reach, raising thousands of pounds to support our work with families, so please help to make it a really fantastic event. If you are donating prizes, please could you confirm with either HQ or Sian on Tickets go on sale on Jan 1st CAIRNGORMS TREK RAISED THOUSANDS


When all the sponsorship money for Tom Hammond’s Cairngorms Trek was finally counted, he had raised a magnificent total of £2,280. Thank you, Tom!

Reach has six bonded places for the London Marathon and the runners are Toni Harris, Reach dad Martin Coll, Reach member Dale Hamilton, James Golding, Mark Cole and Peter Wharton.


Our runners receive a fundraising pack which includes a running vest and resources to help you reach the target, and we cheer you on the day – last year our five runners raised over £10,000. So if you are in London on April 13, cheer them on and don’t forget to sponsor them!

The Byers family and friends are posing here with the Newcastle Eagles Basketball Team. (Notice the height difference!) “Following our previous fundraising event, this opportunity arose,” said Ann, “I felt it was too good to miss especially in terms of getting the word out there about Reach and also any kind of money would be a bonus. We raised £680 from tombola, raffle and bucket donations, and a lot of leaflets were given out. There was a bit about Reach in the programme and the logo was also displayed on the score board too. Francesca was there as our little poster girl. It was hard work but fun and definitely worth it.”

If the London Marathon is a bit too daunting, we also have places in the two high profile London 10k races in 2014, and are looking for runners. These have a much lower fundraising target so why not give it a go and see where the running bug takes you!

THE REACH NEARLY NEW SALES The Gloucester branch raises funds through nearly-new children’s and babygoods sales. Sat 1st March Sat 27th Sept

Sat 21st June Sat 22nd Nov

The sales are from 10.30am – 12 noon All booking information can be found on the website: The sales are held at: The Reddings Community Centre North Road West The Reddings, Cheltenham, GL51 6RF



YOUR CHANCE TO TREK TO THE VERY FOOT OF EVEREST 6 - 23 NOVEMBER, 2014 Join us for a once-in-a-lifetime experience, trekking across the Himalayas to reach Everest Base Camp in the footsteps of the world’s greatest mountaineers. The rewards of the trek go beyond simply reaching the Base Camp or seeing Mt. Everest. You will be raising funds to support the work of Reach and gaining memories that will last a lifetime After completing the challenge, you will have the chance to explore the city of Kathmandu and its many temples and bazaars. The challenge: This outstanding trek to the base camp of the world’’s highest mountain will take you through the lush valleys of Sagarmatha National Park, allowing you time to explore its villages and monasteries. Eight of the world’s fourteen peaks that exceed 8,000m in height are situated in the Nepalese Himalayas and the highest of them all, standing at 8,848m, is Mt. Everest. Your 10 day trekking adventure begins at Lukla, where you will trek to the Sherpa capital of Namche Bazaar. You will have plenty of time to acclimatise to the altitude, following the trail across numerous rivers. Your trek leads gradually uphill from Thyangboche, where you will reach a highpoint at Kalapathar (5,545m) with breathtaking panoramic views of the surrounding peaks and glaciers including Mt. Everest. For more details and to register go to or contact Jo Dixon on A Couple of Questions Do I need to be super fit? You do need to be reasonably fit but definitely not a super athlete. of time each day to reach the camp for the night and no prizes for being first!

There is plenty

What does it cost? There are three payment options. One where you pay for the whole trip yourself (£2,200) and every bit of sponsorship goes to Reach. Another where you pay the deposit and insurance (£500) and agree to raise the minimum sponsorship of £3,750 for Reach to cover the cost of the trek and sponsorship. The third option is a mixture of the above two. Prices include all air taxes. A typical group has between 16 and 30 participants. Self funders pay a deposit of £355 and a balance of £1838, which includes £100 donation to Reach. Minimum sponsorship involves a deposit of £355 and minimum sponsorship of £3750. Flexi payment involves a deposit of £355, a balance of £355 and minimum sponsorship of £3025. Travel insurance costs £92.





STEPS is the leading voice and national charity for lower limb conditions in the UK such as hip dysplasia, clubfoot or any other lower limb condition. Every year, over 2,000 families contact STEPS, often in desperation, for clear information about their child’s condition, the treatment options available and how to care for their child on a daily basis. We understand that this can be a very confusing time and families can call our Helpline on 01925 750 271 or email us at Tim McLachlan, the new CEO of lower limb charity Steps, attended the Reach Conference in Leeds.

Gary Phillips, Reach Vice Chairman says -

“I was delighted to attend the Reach Family Weekend, and see how our two charities share a vision to reach out to all new families coming to terms with a baby with a limb condition,” he said.

“At our last trustee meeting we focused on the strategy for the next year. One of the objectives was to look at how we can do more with less and continue to serve our children and families.

As the new CEO of Steps, I am looking to ensure that whenever a parent learns the news that their little one is affected by a lower limb condition they should immediately be put in touch with Steps.

“Steps and we will be together for maintaining

After talking with Reach trustees, we are now planning to work together on a new on-line portal that will be a one-stop-shop - a first port of call for families affected by either arm or leg conditions. This portal would be very simple and direct visitors to either Reach or Steps, whichever charity is appropriate for their child.

“At the trustee meeting it was agreed I would lead on formulating ideas regarding our partnerships with other organisations which as well as Steps, includes the European Dysmelia Reference Information Centre (EDRIC), HemiHelp and other organisations.

The idea is that when the health professional breaks the news, they point the parents to the portal. The important thing is to make sure that the health professionals have simple information at their fingertips to pass on to parents. This mission lies behind our First Steps Campaign and I was so pleased that Nigel Tarrant and Gary Phillips attended its launch in London on December 2. The First Steps Campaign reaches out to parents, professionals and the wider public across the UK with the goal that every Midwife, Sonographer, Doctor and Nurse knows that their first step is to contact STEPS when they share the news that a baby, child or adult may be affected by a lower limb condition. Equally, these professionals need to put parents in touch with Reach if upper limb conditions are present. If we can do this through a one-stop-shop portal, that would help all parents affected. Both our organisations are moving forward and now is a perfect time to look at working in partnership. For example it makes such good sense to share stands at exhibitions and conferences, and we will also be exploring the possibility of Steps and Reach working together on other areas in which we share common goals. Watch this space. You can find out more about Steps by going to or



Reach share some common goals and looking at areas in which we can work the benefit of both our members whilst our charitable independence.

We look forward to initially working with Steps on the shared online portal.”

LUCKY WINNERS 2013 Quarterly Membership Prize Draw winners are: Mrs and Mrs Wainright, April-June Mrs and Mrs Muncey July – Sept Steve and Kelly Owens Oct - Dec The prize draw is now closed. Thank you for settiing up your Standing Orders

CONGRATULATIONS Stephen Blatchford, CEO of Chas. A. Blatchford & Sons Ltd. won the Institute of Directors Family Business Director of the Year Award 2013 at the National Award ceremony held in October. After winning the IOD Family Business Director of the Year Award for London and the South East in May this year, he was delighted to have followed up this success by winning the National Award. Stephen Blatchford is the fourth generation of the family to run the business founded by his great grandfather in 1890.

FRANK LETCH TO STEP DOWN AS TRUSTEE “I will be resigning the trusteeship next year after 18 years.” the elder statesman of Reach, Frank Letch, announced at the AGM in October. But don’t panic! Frank is not disappearing altogether. He gave assurances he would still be around ‘as a Grandfather Figure’, and until he retires, he will still be busy keeping in touch with Reach’s European counterparts as well as keeping abreast of changes to the disability benefits system.

PERSONAL INDEPENDENCE PAYMENTS From June 2013 the Department of Work and Pensions has rolled out a new benefit to replace Disability Living Allowance for those 16 years old or over until they reach the age of 65 or state pension age. This means that most of the Reach children will still be applying for Disability Living Allowance. When recipients reach the age of 16 and they will transfer their benefit to Personal Independence Payments on renewal. PIPs are similar to the long-running DLA in that they have two components covering care and mobility. The care component looks at 10 activities of daily living and asks the claimant to indicate what assistance they reasonably require. They are expected to be able to use aids and appliances. They are also expected to complete the activity in a reasonable manner [the issue of safety] and in a reasonable time, meaning no slower than twice “normal” speed. If they cannot they will gain points towards an award. The benefit is paid at two rates, namely enhanced [the equivalent of highest care or higher mobility] or standard [equivalent of middle rate care or lower rate mobility], which means the lowest rate of care has disappeared! The 10 activities of daily living cover such things as preparing and cooking a main meal for one, washing and bathing, dressing and undressing, managing medication and therapy and toilet. The claimant will indicate the amount of assistance they need and this will be judged against a number of descriptors. Each activity can earn up to eight points, depending on the level of need. The number of points for the activities will be added up and if it comes to at least eight the claimant will receive the standard rates of payment. If the total reaches 12 or more they will receive the enhanced rate of payment. As with Disability Living Allowance claimants will need to answer all elements fully and honestly. It is always useful to be able to send in reports from hospitals, prosthetist, GP, occupational therapist or any other care professional who can back up what you say. If in doubt you should seek advice from one of the groups who deal with this sort of matter. I wish you the best of luck! Frank Letch

THE LIMBPOWER PRIMARY AND JUNIOR GAMES Held at Stoke Mandeville Stadium in October, this two day event involved 71 children aged 5-18, including several Reach members, having a go at 14 sports including swimming, cycling, hand-cycling, wheelchair racing, athletics track, athletics field, archery, badminton, sitting volleyball, tennis, table-tennis, wheelchair basketball, wheelchair dance sport and football. “We love organising the Primary and Junior Games and seeing young amputees and children with congenital limb difference taking part in sort and enjoying themselves,” said Kiera Roche, LimbPower Chairman. “We think this event works because the children are among their peers, so they feel relaxed and comfortable. Watching the children tackling the different sports with such enthusiasm and gusto is very inspiring: It is also great to see the parents and children forming lifelong friendships.”

©Rikk Cahill



Make a note in your diary: the 2014 Primary and Junior Games will be held on 4th - 5th October 2014 at Stoke Mandeville Stadium. Children over 11 can also join the Learn to Run Clinics starting in January 2014. See the LimbPower website for the full list of events.

FUNDRAISING.........AND FUN DID THE RUN, GOT THE T-SHIRT “Graham (Olivia’s Dad) and I raised £1,774.00 doing the Chilham Castle Challenge with a team of runners. ” said Claire Parkin. As you can see from the picture, it was a wet and horrible day! So WELL DONE and thank you both!

It was a horrendous and challenging, undulating, cross country run - but rewarding!

TEAM GB PARACLIMBER TO COACH YORK REACH MEMBERS Sianagh Gallagher, 16, from York, is ranked fourth of Europe’s paraclimbers – despite being the only one with just one arm. Her sights are set on the Paralympics but in the meantime she is determined to start up a climbing club in York for young people with upper limb deficiency, following on from the success of a similar club for the visually impaired in Liverpool. Her mum and Tracey Dennison from Yorkshire Reach have got together and the club will launch in the New Year, based at the Red Goat Climbing Company in Layerthorpe, York. “Essentially what we’re looking at is a climbing club for Reach members age 7+,” said Tracey. “Strictly speaking it would be bouldering - lower level climbing without ropes.” A bid for funding is due to be submitted to Children in Need but Tracey is keen to find out the level of potential demand for the club. Anyone interested should contact her on If people come forward and the bid is successful, the club could launch taster sessions at Easter time.

AN EXPENSIVE TALENT FOR FOOTIE “My grandparents sponsored me £1 per goal this season. This year I have reached a total of 69 league goals! I have been playing football since I was six years old for my local club, Strensall Tigers and have recently been selected for the Leeds United Shadow Squad Under 10s. “Maybe when I am older, and a rich and famous football player, I can repay my Granddad!! “Thank you to my Grandma and Granddad for their support.” Lewis Humphreys (9)

NORTHUMBERLAND STRONG MEN Kevin Kelly and Carl Davis ran 12 miles from Prudhoe to Newcastle carrying three stone-weighted rucksacks and raised a splendid £660 for Reach. Kevin’s son Adam was born with radial club hands. He has already had three operations to straighten one of his arms and is having pollicisation after Christmas. The two are planning bigger and better fundraising feats next year so GOOD LUCK to them both and especially to Adam with his op!





I would recommend RAW as it develops amazing life skills!

I had so much fun

RAW this year was as good as ever! It was my second time doing outdoor adventure with Reach and it just gets better. For me, the best part is being able to see others attack everything that is thrown at them. It really gives you a boost seeing people complete tasks without batting an eyelid! Nothing beats the friends that RAW weeks bring you. Everyone is friendly with everyone, wanting to know about how you are and what you have been up to. As I am a little older now, it was very enjoyable for me to just take a step back and see people enjoy RAW for what it is! Joining with HemiHelp this year was fantastic as it helped some of the younger children get a grasp on how others can be helped also.

Seeing people smile once they have completed the task set is such a good feeling. Even better when you complete it yourself!

When I picked my son up off the bus after the week, the children all looked like they had returned from reaching the sky


RAW weeks just get better!


Mitchell Feaver “I really enjoyed the week in Bude,” said Robbie Carrick-Smith, one of the members of Hemihelp. “I had so much fun absailing, rock climing and scrambling on rocks. It was really nice to meet everyone, as they were really friendly and the whole week was really well organised.”

THE SOUND OF MUSIC REACH and Hemihelp joined forces for for the week at the Outdoor Adventure Bude this summer. 40 children from 10 accommodated in the centre - Parents,

the first time Centre in to 18 were all not welcome!

Lots of willing helpers made the week tremendous fun and run smoothly. No time to miss home or write a postcard; every moment was accounted for there was no ‘I can’t do’ just a lot of ‘I can do’ - abseiling, archery, canoeing, climbing, coastering, high ropes, orienteering, problem solving, raft building, surfing the list is endless - growing in confidence, making new friends, overcoming difficulties and challenges of everyday life in a totally supportive environment, respecting each others’ weaknesses, looking out for one another and being able to come to terms with disability and laugh and find new ways of doing things.

The Summer issue of Within Reach featured Cyrus, DJ-ing aged 13. I’ve discovered he has a rival! Matt Howes, 25, from Norwich, is a professional DJ who lost his arm in a road accident. He has been raising funds for the Limbless Association and was happy to share his enthusiasm for life with Reach.

“It was such an enjoyable experience, to be doing all the things that I wouldn’t normally be doing, activities that I wouldn’t have thought possible. My hemiplegia makes one side of my body weaker, it makes it very hard to do the things we did on that week,” said Robbie Carrick-Smith. “I really liked finding out what I’m capable of and not finding out the things that I couldn’t do. The fact that everyone there was disabled just threw the idea of disability out of the picture.” And his mum said: “I would recommend this week to anybody.”

George Buxey on drums

“Since my accident, I’ve had to change almost every way I do things. You have two options when something like this happens: Get on with your life, or feel depressed, housebound and hate yourself. For me, I didn’t feel like I had a choice. “I just adapted, that’s the only challenge I see in front of me. Things that I did before just take a little longer than they did. To date, I can still do everything I could do before, just with a lot more patience and thought. Sure, I could probably get away with asking somebody else to help me but why bother someone else if I can do it myself? “I LOVE and APPRECIATE the gift of life and I just wanted to get on with it straight away. It’s a beautiful world out there and if you think by taking away my arm that I’m going to sit at home and cry myself to sleep every night then you’ve got another think coming.

“I started playing drums at the age of 13, my oldest brother (10 years older) started playing when he was 16, so I always used to wail around on his drum kit - not properly, but enough to get the idea that I wanted to play”, said George. “I started playing bass first when I was 16, as I didn’t think I would physically be able to play the guitar, but took it up when I was 17 anyway, and now front my own band on guitar/vocals, so I for one, am suprised I can play well enough to do that. “That was a reason I played drums first - I quite liked the idea of playing guitar but didnt think I could physically handle it. “You can see me on TheOneArmedDrummer and follow this link to my (now defunct) band when we played the O2 Academy last year (as a drummer) - sets/live-at-the-o2-academy.”

“My DJ-ing has changed because in the process of adapting how I used to do things, I’ve also discovered all the new things I can do! I now concentrate a lot more, which has made me into a perfectionist and I get incredible joy touring the world and seeing DJs pre-judge me before they’ve heard me then watching their faces as I do something they couldn’t do with two arms. I use my nose, cheeks, elbow & whatever else I need to, to create the sound I need at that particular time. “It led me to realise the term ‘DIS-abled’ is so politically incorrect it beggars belief. Without being big-headed, I can do my job better than 95% of the DJs in the UK and I’M the one that’s DISabled? Surely it’s them? “Never forget that EVERYTHING happens for a reason, even if we don’t know the reason right away. Matt Howes




BRANCH NEWS Reach Scottish Branch family weekend at Ardeonaig, on the lovely banks of Loch Tay, was another great success. Activities included kayaking, gorge walking, archery, low ropes and high ropes. The weather was great. The water was cold but it was sunny. There were kayaking games involving rubber ducks and balls flying overhead and the odd capsize but this was a great part of the fun. The more adventurous (Scottish term for DAFT) enjoyed gorge walking and we then jumped from half a mile up into the water. OK it was probably four or five feet up. We were warned to tie the laces on our boots as many a boot has been lost in the depths of Lock Tay. The Loch Tay monster will have good footwear.


The younger children enjoyed the low ropes obstacle course and on the high ropes, the children put the adults to shame. They are fearless when it comes to climbing up poles, walking along ropes at height, standing on the pizza box sized piece of wood (about forty feet in the air) along with four other people and doing the “Spider Man”. The rounders was taken very seriously! Absolutely NO CHEATING went on as the adults behaved themselves 100%! Aye right! On Sunday, the families and children were split into groups to compete for the Douglas Panton Memorial Cup. A few chocolates were bartered for points by some of the less trustworthy individuals (yes you Susan Gullen!!). Douglas Panton would have enjoyed this part. After some tense minutes, yes we are all that competitive, the winners were announced! The Millars and the Morans!!

SUE STOKES AWARD Congratulations to Humphrey Keeper on being selected as the first recipient of the annual Sue Stokes Award for outstanding achievement. Humphrey sang Jerusalem beautifully at the opening ceremony of the London 2012 Olympics. Nominations for 2014 opening soon........

All families thanked the Ardeonaig staff and leaders as they appreciated their hard work. And finally, a huge Thank You goes to Stacy Roulston for organising another fantastic family weekend. Michael Moran NEWS FROM GLOUCESTER Climbing at The Warehouse in June gave the children a good opportunity to bond with each other and try a new activity. They enjoyed free climbing on a low level wall, climbing using an automatic belay system and bouldering. This was followed by the all-important pizza and cookie tea. The climbing wall staff made it so much fun and we would like to thank them for their hard work at this very successful event. Our Reach Summer Party was a lovely afternoon! The children met at Cheltenham and enjoyed the giant caterpillar bouncy castle. We were very fortunate this year to be joined by local children’s author John Dougherty, the author of Zeus on the Loose, Zeus to the Rescue and Zeus sorts it out. He sang some very funny songs, read exerts from his forthcoming book and recited some very entertaining poems. Our heartfelt thanks go out to John for giving up his time to come and entertain us. THANK YOU to Sam and Steve Wood who organised the Climbing Wall outing and catered for the summer party. Thank you also to Hannah and Anthony Palin who helped sort out the room for the party.



LOST IN THE MAZE The first outing of the newly formed North and East Yorkshire Branch was held at York Maze in August and three families came along for a chat, a play and some good fun. After our picnic lunch we all got lost together in the Maze and afterwards the kids had great fun on the bouncy pillow, inflatable slide and water wars amongst other things! When the kids were worn out with playing we watched pig racing. It was a lovely day and it was great to get to know some other Reach families. We made good use of the Reach balloons Jo sent at our picnic - thank you! The North and East Yorkshire Branch will next be meeting in January, if you live in the area please join our group’s facebook page so we can get to know each other and keep in touch! Tracey Dennison SARAH BAILEY PLAYING THE CELLO Sarah is nine years old and has been playing the cello for two years. Her cello is strung in reverse as she bows with her left arm. She had her cello attachment made at the Southmeads Disablement services in Bristol. The attachment works brilliantly; she has performed solos in her school assembly and has just performed with her school orchestra in the end of year concert. Sarah is preparing to take grade one at Christmas. You may notice her leotard in the picture, she had just returned from her Modern and Tap classes when the picture was taken! Both Geoff and I are very proud of all her achievements. Katrina Bailey This year’s AGM was my 17th one! I had so much fun spending time with my friends and I thought this year’s speakers were very intriguing. Its great to listen to people who I can relate to and learn from. The photo is of us eating our arms at the dinner dance the food obviously didn’t fill us up! Pictured left to right are Jennie Sands, Emily Tisshaw (me), Clara Price and Claire Cashmore

North met West at Cumbria Lakes Zoo and a fantastic day was had by all! Lots of families came although the weather was typical for England! We didn't allow it to stop our fun! I would recommend other branches to meet together too! Joanne Hodge

LAURA HAMILTON popped into ITV studios recently and bumped into Reach member James Spiers-Suttle and his mum Debbie. James and Debbie were off to watch Stephen Mulhern’s new show being filmed.

NEW ROCK CLIMBING OPPORTUNITIES Rosie and Jim run outdoor activities (rock climbing, hiking, camping) and they are volunteering their expertise and equipment to enable individuals with disabilities to take part. The small London-based business works with schools and runs a variety of trips for adults. Having seen the beneficial effect of rock climbing sessions on a client with disabilities, they are keen to develop this aspect of their work. “We are offering free outdoor activity sessions to charities or organisations who feel their members would benefit. We would offer instruction and use of equipment free of charge, with the organisation providing appropriate staff to support the participants and covering additional costs (such as entry to a climbing wall and transport arrangements). We are fully insured with civil liability insurance and have an AALA licence. If you are interested, contact:




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