Summer 2009 Number 110

It’s Ability not Disability that Matters

In this issue

Branch News

Great Wall of China Trek

CompetitionGadgets to win!

withinThe Official Magazine of the Association for Children with Hand or Arm Deficiency

AGM 2009

FundraisingFeatures

withinPlease send photographs and stories for Within Reach to:

Jane Tarrant Editor, Within Reach, 64 Embercourt Road, Thames Ditton, Surrey KT7 0LW Tel: 020 8224 0961 email: withinreach@reach.org.uk

Registered charity no. 278679

Comments, articles, requests, ideas: We are pleased to receive comments, ar-ticles, requests or suggestions for future editions of Within Reach.

Letters: Any letters for publication should include the name and address of the send-er, but these can be withheld from publica-tion if requested.

Advertising: Within Reach has a print run of 2,500 and is distributed to members, subscribers, health services and special-ists. If you need to reach this key audi-ence call: Jane Tarrant on 0208 224 0961

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.

Closing Date: Material for inclusion in the next issue must be received by

30th September 2009

Reach MembershipMembership 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 £25. You will recieve this quarterly magazine plus you will be afforded access to the ‘members only’ area, including the mem-bers’ message board on our website

www.reach.org.ukReach 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 is a benefit to members and is effective from the age of 2 to 65 provided membership is continu-

ous. Details are available from H. O.

Other publications available from Reach • Reach – An Introductory Booklet • The Child With An Artificial Arm: Guidelines for Teachers • A Guide to Artificial Arms by Mark Broomfield • Pollicisation – clinical notes • Poland Syndrome: a short description • DVD – An introduction to Reach, on short-term loan or to buy for £5

National Co-ordinator: Sue StokesHead Office, Reach, PO Box 54, Helston, TR13 8WD

Tel: 0845 130 6225Fax: 0845 130 0262

Mobile: 07721 929583email: reach@reach.org.uk

Office hours: Monday - Friday 9:00am-5:00pmThurs. 8:00pm-10:00pm (mobile only)

www.reach.org.uk

AGM pg 4

Annual Report pg 14 - 15

Branch News pg 16 - 19

Great Wall Trek

pg 8 - 10

Members’ pagepg 12

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Welcome to our Summer Issue, number 110!

It has been such a tricky job editing this issue as Sue asked me to cut down both her article on the Trent Symposium (pages 20-21) and her Diary of the China Trek (pages 8-10) but I found both so interesting I could hardly bring myself to leave any-thing out. I would urge you to read both and I am sure if you would like to know more about either but particularly the Trent Symposium Sue would be happy to inform you.

On the Trustees pages (pages 6-7) Chairman Gary Phillips addresses some of the concerns that have been raised about our becoming a Charitable company limited by guarantee. Everyone will be given a chance to vote, either at the AGM or by proxy so it is an important read. Please get in touch with Head Office if there are any matters that you wish to raise as a result of reading Gary’s explanation.

In the middle of the magazine you will find our Annual report and accounts. We have had another successful year with the RAW and family weekend proving more popular than ever. This then means that we need to raise more funds but with the hard work and generosity of so many, our finances are reasonably sound. Stories of the Fundraising week and the 2009 challenge are trickling in (pages 12-15) and we have news of some of our members’ other successes. Charlotte Fielder’s book ‘Shared Experiences’ has finally come to fruition and details of how to obtain a copy are on page 23. This has been a labour of love and a tremendous amount of work for Charlotte on top of all the other things that she manages to pack into her life. Thank goodness that she did persevere when the going got tough, the book is an amazing read.

As this issue goes to press there are two fascinating stories in the news. One concerns our member Riam Dean and her fight for compensation for discrimination against the American clothing company Abercrombie and Fitch. The other concerns the families who belive that toxic waste could have caused their children’s deficiencies in Corby. I hope to report on both in the next issue. Best wishes,

JANE TARRANT

AGM 2009

Reach Links Abroad

ItalyClaudio Pirola PresidentRaggiungere, Via deiMissaglia 117 - 20142 MILANO - ITALY email: info@raggiungere.it www.raggiungere.it

HungarySusan SzendroH-1164 Budapest, Cement U 6, HUNGARYTel/Fax: 36 1 4000 799

New ZealandNikki Adams10 Pennant Grove, Onepoto, Titahi Bay , Porirua, NEW ZEALAND 5022 Tel: 006442367147 email: niknewzealand@yahoo.com

This year’s AGM & Family Weekend takes place in Dublin from October 23rd - 25th at the Ashbourne Marriott just outside the city and close to the airport. The hotel, built only two years ago has wonderful facilities: large, airy meeting rooms for the creches and workshops, bedrooms which adapt to accommodate families, a swimming pool, sauna, fitness and training suite, ample car parking, bars and restaurants.

As usual we will have some inspirational speakers alongside the charity’s AGM and this year we will also be vot-ing on changes to the constitution. This year will also see the launch of Charlotte Fielder’s book ‘Shared experi-ences’ the culmination of three year’s hard work. In addition there will be plenty of activities for the children and all hosted by our Patron Laura Hamilton. Places are still available but are going fast. If you want to come along please contact Sue for a booking form. Cheap flights (around £75.00 per adult including all taxes and fees) are available from Ryanair http://www.bookryanair.com and Aer Lingus http://www.aerlingus.com although there are some other flights from local airports that may be even less.

New feature for the magazine

Ever since I took over the magazine nearly four years ago now, I have wanted to include a children’s page. The subject came up at our June Trustees meeting and the Trustees too are excited by the idea as is our Patron Laura Hamilton who wants to be involved as well. I am therefore going to dedicate a page to our children in the next issue. All I need now is lots of stories and pictures to fill it up! Laura will also be happy to reply to any questions in the magazine so please encourage your children to write in.

Nothing is too small to be included and anything at all is welcome whether it be a drawing, a certificate, a new skill, a nice photograph or a letter telling us all their news. Perhaps the Branch Co-ordinators can raise it at the next Branch meetings. Come on everyone, get writing to me:

Jane Tarrant, Within Reach, 64 Embercourt Road, Thames Ditton,

Surrey KT7 0LWThanks,

JANE

New Booklet for Parents of Disabled Children who want to return to the Workplace In full colour, with photographs of parents and their families, the booklet was written with in-put from a large network of working par-ents of disabled children, There are sections on:

· What sort of job?· Where to find jobs· Filling in application forms and writing CVs· Going for interviews· Time off and flexible working· Self-employment· Care· Financeand there is a list of useful organisations and web sites. Janet Mearns is also available to talk to groups of parents and/or interested professionals in the London area about the information in the booklet and the support Working Families can provide to parents of disabled children who want to work. Contact her on 020 7017 0072 or janet.mearns@workingfamilies.org.uk for more information or a copy of the booklet.

Help to button up!

Independent living solutions from Mountway

Mountway, a leading specialist in the design and provision of inde-pendent living solutions, offers a comprehensive range of products that can make a real difference to the lives of people who need as-sistance with day to day living.

Many of the products in Mountway’s extensive product portfolio en-compass the latest in assistive technology and design, helping to al-leviate difficulties associated with a variety of disabilities. The range includes aids for bathing, toileting, bedroom, transfer, mobility and daily living.

From Mountway’s bathing range, the Aquila bath lift is a lightweight reclining bath lift with a backrest which reclines at the touch of a button. It is particularly suited to users whose specific conditions may benefit from opening the seat-to-back angle. Weighing less than 10kg, the robust and compact Aquila offers an array of accessories making it equally suitable for adults and children, and for use with a variety of bath styles.

Recently launched in the UK, the Granberg range from Mountway encompasses a range of motorised height adjustable wall-mounted washbasin units, as well as a portfolio of mechanisms for the kitchen that allow work surfaces and wall units to be height adjusted and easily accessible for a variety of users.

One of Mountway’s daily living aids, the Butler buttoner, helps users with impaired mobility in their arms or hands to manage buttons independently. The Butler Buttoner comes in two styles; the Butler buttoner small, with its spherical grip suitable for small buttonholes, and the Butler buttoner long, with its long handle/combination loop for larger button holes.

Thanks to Mountway we have 10 unique Butler buttoners to give away worth £17.00 + VAT each. All you have to do is send me your name and address and we will draw the winners on the 30th September.

For more information on the Butler buttoner and for full details on the range of products available from Mountway, visit:

www.mountway.com or telephone 0800 014 1852.

News

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10 to win!

Trustees’ pages

6

Reach the future structure of our organisation

Since 1978 when Reach was formed it has steadily grown into what it is today. It is respected within its specialist area, by other chari-ties and health care professionals, many also leaders in their field. It provides an ever growing range of support and services to its members both in the UK, Republic of Ireland and worldwide. But, in order to meet ever growing expectations Reach needs to keep up with current trends and new legislation.

In 2007 under the leadership of the then Chairman, Georgie John-son we undertook to carry out the first full membership survey. The results of which reinforced that we were providing the serv-ices and support that our members wanted. It did however provide the opportunity to review our future and formalise a 5 year plan to ensure we continue to meet the needs of our current and future members.

A part of that plan was to review the constitution which was last reviewed in 1997. Whilst we, the trustees, were doing this it was re-alised that our services and activities had increased both in number and in popularity. It was felt that as the range of services and activi-ties we offer increases, so do the risks. It was these risks which prompted the trustees to look at becoming an incorporated charity. At the March trustee meeting the trustees voted to put the wheels in motion to make a number of special resolutions to the members at the next AGM in October.

In order to understand what is being proposed it’s essential to un-derstand our current structure and its limitations. Reach was set up in 1978 as an unincorporated charity. This means it is registered with the Charity Commission but all liabilities, contracts and agree-ments are with the trustees as the charity has no legal entity of its own. Therefore, the trustees are personally liable for any financial commitments, or costs incurred as a result of a court action.

The proposed future structure will be as a charitable company lim-ited by guarantee. A recent governance survey found 72% of chari-ties are incorporated and nearly all new charities now start this way. Under this structure the charity is registered with the Charity Com-mission and Companies House. More importantly Reach becomes its own legal entity and can enter into contracts and agreements in its own right and the liabilities are generally with the company, not the trustees personally.

So what does this mean in practical terms to members…

It’s important to note that it does not mean that Reach stops being a charity. It remains a charity registered with the Charity Commission. In reality, the members of Reach will not see much change at all. All the aims and objectives of the organisation will remain unchanged and the day to day activities of Reach will see very little change. It might however, encourage some members to think about nominat-ing themselves as potential trustees where in the past the personal liability may have put them off. Essentially the changes are on paper and within the management structure of Reach not its day to day services.

So what is the process now…

There are a number of stages that need to be completed in order to complete the transition to becoming a charitable company. These stages are:

1. The legal Consultation

As mentioned in the last Within Reach magazine we have appointed solicitors Colemans-Ctts to act on our behalf during the incorpo-ration process. They briefed the trustees on the advantages and disadvantaged of incorporation and advised on the forthcoming pro-cedure. They will handle the legal process from here on.

2. Draft Memorandum and Articles of Association

Our current constitution will be replaced by Memorandum and Ar-ticles of Association. These have been drafted by our solicitors based on the standard Charity Commission model and our current constitution.

3. Register a Company and Company Name

A company name will need to be selected. This will in effect only be a trading name as it is envisaged that we will continue to be known as Reach the Association for Children with Hand or Arm Deficiency. The company name and company limited by guarantee will then be registered with Companies House and an application submitted to the Charity Commission to register the new charitable company.

4. Special Resolutions put to AGM

The AGM is where the process is ratified and the final stages are given the go ahead. There are likely to be two resolutions put to the members at the AGM. These will be sent out in advance with the formal notice of the AGM and the ability to complete a proxy vote.

The first is to close the current charity as it is and the second is the formation of the new charitable company and the transfer of all assets to the new company. The closing of one and formation of the new charity is effectively an administration process and members will see no difference in the service and support Reach gives.

5. Creation of New Company and Transfer of Assets

The final stage is the formation of the company limited by Guaran-tee and the transfer of all assets.

In Conclusion.....

The trustees feel that this is an essential and natural step for Reach at this stage of its history. It will give Reach its own legal entity. It will allow Reach to operate in a robust and modern structure, and portray a professional image. Once the draft has been completed of the Memorandum and Articles of Association they will be available

Trustees’ pages

on the website. If you have any further questions or require further information please contact Sue Stokes at Head Office or myself on email chairman@reach.org.uk.

Reach Trustee ReportMeeting Saturday June 27th 2009Held at the Holiday Inn, Slough

Our 4th Trustee meeting of the year was held on the middle Satur-day of Wimbledon. Unfortunately no strawberries and cream on the agenda, but at that stage, hopes still alive for Andy Murray!

Family Weekend and AGM

First on the agenda was our 2009 Family Weekend and AGM, which is going to be held at a new Marriot hotel on the outskirts of Dublin (Ireland), Oct 23rd – 25th. Chris and Rita Creamer together with Sue (of course), are working very hard and playing a big part in organising and planning this year’s event. Chris reported that all is going according to plan, speakers are arranged for the day and an exciting afternoon planned for teenagers off-site on the Saturday. The last time our Family Weekend was held in Dublin, we had a fan-tastic line-up of entertainment on the Saturday night, some may say unbeatable. However, Chris has organised something special again this year, but with a certain glint in eye, would not reveal what! We look forward with intrigue to “a secret event” in the evening. Book your accomodation through Sue now, and make travel arrangements asap, there are some great deals on flights to Dublin at the moment. There will be a shuttle service from the airport to the hotel and Sue will co-ordinate pick up times from the airport. Our 2009 Family weekend and AGM promises to be another great weekend.

Branch Guidelines

A sub-committee have been working on updating Branch Guidelines. It was agreed to present this document to Branch Co-ordinators at their meeting at the AGM/family weekend.

Shared Experiences

Great news, Charlotte Fielder’s book “Shared Experiences – The Ex-perience of having and parenting a child with upper limb deficiencies” is almost finished. The plan is for Charlotte to launch her much await-ed book at the Family Weekend in Dublin.At this point in the meeting Tim Deeming from Irwin Mitchell Solictors joined the Trustees. Tim’s company approached Reach about 6 months ago offering help and assistance. The company works with other Charities in similar fields and kindly offered to help with the production of Charlotte’s book. As well as financial help and advice, a team of designers from the company have helped with the layout of the book. Tim showed us a mock copy of the book and it looks absolutely fantastic.

As Trustees we have been privileged to read through draft copies of the book. It is a fascinating book which I am sure will prove to be an invaluable read for all Reach parents and many Health profession-als. It gives honest and heart-warming personal accounts that will hopefully make parents realise they are not alone, as well as giving valuable insight and practical advice. It is a “must”, I couldn’t put the book down when I started reading it. Thank you Charlotte.

Governance

On-going plans with our incorporation project were then discussed. Gary explained that the subcommittee had been working with Nigel Tarrant’s firm Coleman – CTTS, to prepare the Memorandum and Articles which would replace our current constitution if incorporation was agreed upon and accepted by special resolution at the next AGM. It was felt to be of great importance that Reach’s objectives remain the same and that as far as possible the Memorandum and Articles stay close to our current constitution.

Reports

National Co-ordinatorSue, as National Co-ordinator then presented our financial report. This is analysed and discussed, monitoring our progress in relation to budgets set at the beginning of the year. Sue then reported on her recent Reach “activities” – meetings and conferences attended.

FundraisingJulie Detheridge, chair of the Fundraising Committee then reported. The Fundraising Committee continue to work on a fundraising pack. The 2009 Challenge for each member to raise £20.09 is still in progress, please remember to let us know what you did – be it a coffee morning, cake sale or barn dance! Ideas are being thought of for the 2010 Challenge, so watch this space. Possibly a Reach Walk Week, a County Challenge Walk.Plans are in progress to have a display at the AGM, celebrating Fun-draising successes, giving members ideas for fundraising. Julie has also had the idea to introduce a thank-you badge for people who organise fundraising events.

WebsiteTim Gerrish then updated us on website developments. ADCL, the company that have been updating and developing our website have now finished all their areas of the website. Tim continues with final “tweaking”, on-going development and sorting out problems. Ideas are in place to enhance the Branch area, with the inclusion of useful documents for Branch Co-ordinators eg. Risk assessments, Health and Safety Templates and Child Protection Documents.

So, all in all, another packed and busy meeting. We look forward to meeting and seeing as many members as possible in Dublin for the Family Weekend and AGM, it really is a great weekend.

JANE BOWEN-MORRIS

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Sue’s diary

I have never in my whole life been a very active or sporty person and I’d be the first person to confess that I am carrying more weight than I should be. Believe me I have often tried to address that fact but with no real success, so it amazed a lot of people when I decided to take part in an event of a lifetime.

I have been involved in the administration side of several Charity Challenge events including Everest Base Camp, Kilimanjaro & the Volcanoes of Cotopaxi but I have always stayed firmly in my office chair. But when it was announced that the next venture would be to Trek part of the Great Wall of China for some inexplicable reason I decided I’d like to take part. I have to say that when I first gave it thought I had imagined a reasonably flat topped wall, a large wall granted but surely it was only a matter of walking!

Having thought about it I knew I had to sign up as quickly as possible or I’d talk myself out of it, so in November of 2007 I was first on the list. I joined a gym in January 2008 and was determined to be ready. It was a few months in to 2008 that I really started to look at what the trek would entail. Who had ever heard of a wall of steps! 15 months in the gym still hadn’t reduced my weight a lot but I did feel a lot fitter so even though I was very apprehensive I was looking forward to the challenge. As the flight day approached there were 11 of us set to meet at Heathrow Airport on Friday 27th March.

First obstacle of a ten hour flight out of the way, we arrived in Beijing on Saturday 28th. We were met by our Charity Challenge staff and transported to our first hotel, we were told it was a 4 star but after this one it was downhill all the way, hotel wise that is. From the coach we caught our first glimpse of the wall – Oh My God!!!

We thought we’d better have a warm up walk so we went exploring through the local village for a couple of hours. No problems so far, walk in the park, nice group of people, good company.

So far so good.... Day 1 as a warm up for the wall our first trekking day was 10Km to visit the Black Dragon Pools. Legend has it that the Black Dragon was driven away by the White Dragon but because the White Dragon

failed to control the weather successfully the Black Dragon had to reclaim the pools. Our trek today was through snow blizzards which we were told are very unusual in China in March. From the beginning I was finding it very difficult to keep up with the rest of the group. Although I wasn’t the eldest member it soon became clear I was the least fit and had the shortest stride. Nine of the other ten members were men, most of whom had very long legs. My efforts to keep up only resulted in breathlessness and having to stop often. After many times of catching them up only to have them zoom off again I de-cided to tell them not to wait but to stay at their own pace and I’d see them at the finish eventually. I did have a trainee guide and the group doctor walking with me and we only got lost once, we’d managed to find the route by following the footsteps in the snow but at one stage the area was clear, unfortunately the walkie talkie took that moment not to function properly. Tonight’s lodge was rather like a cheap mo-tel but it was a welcome sight at the end of a very hard day.

Icy conditions clearing the pools for a boating fest Day 2 and we actually take to the wall. First though we have to ascend up to the top of the mountain the wall is built on, I have to say that given the previous day’s experience I was already having serious doubts about my ability to survive the week and would gladly have given up there and then but that option was not on the table. Much of this part of the wall has collapsed, but this is today’s section all 12kms of it.

The Great Wall Trek

Large parts of the wall are still dilapidatd

Day 3 was going to be our longest and most difficult section of the wall. Our guide had decided that because the majority of the group was very strong we would actually tackle more than was originally planned. Oh the Joy! However, as they also knew I was really going to struggle to keep up they had devised an alternative plan of action for me – a short cut! Well that’s how they described it. This was the only day I got ahead of the pack as I arrived about 30 minutes before they did, it was also the only day I felt the cold as it was once again snowing on us and the cold wind cut through the turret as I waited. When the men joined us we then left the wall only to discover we needed to descend using a set of what must have been at least 100 metal steps, cross a very long rope bridge and then again we had a choice, walk down to our lodge or take a risk on a very high and long zipwire across the lake to take short boat trip to the lodge. Most of us took the zipwire and I have to say it was quite fun.

It’s getting tough but look at that view!

Day 4 was to be something completely different and turned out to be my favourite day. This time instead of stepping on to the wall we descended over the top alongside it and dropped down the mountain to pay a visit to the village of Gangfang some 11 kms away. The Great Wall is a huge tourist asset for China so much so that many of the small villages in the mountains are no longer lived in. Vast numbers of the population have moved out in to Beijing or larger villages. Locals make their living around the wall and tourists. When trekking along the sections you are always accompanied by a lo-cal guide, embarrassingly many of these are women who wearing only normal clothing and trainers walk along with you and help you up and down some of the more tricky steps and crumbled areas. Once they have done their day’s work you are expected to either tip them by way of thanks or buy some of their merchandise, books, t –shirts, chop-sticks, fans etc which of course they have carried with them all day. I’m sure the poor guides that chose me as their ‘victim’ wondered what on earth I was doing even being there, puffing and panting away whilst they shinned up and down hardly breaking sweat. But for those who remained in the more out of the way villages, life was not so simple and the Wall didn’t really bring them anything from the ‘normal’ tourists. As a company Charity Challenge do their best wherever they go to put something back in to the community of the area and also to show their participants the real rural life of the area. So it wasn’t a stroll to the village but a long hard trek up and through the mountains and valleys until we reached Gangfang. On first impressions we thought it all didn’t look too bad, lots of good

solid houses, new building going on and mostly friendly folk, with even a stall selling biscuits and fruit at very reasonable prices, but we were whisked through this section and back out on the mountain tracks after being told this was the rich end of the village and not our goal for the day.

The children wearing hats and gloves in class

A few more miles and we enter another section of the village where we hope to visit the local school. Our guide goes ahead to make arrangements with the Head of the School and it is agreed we can visit the children if we all make a small contribution to school funds. A whole 10 Yuen each ( hmm that’s a £1 then). It was great to see the kids in the playground all happy and laughing, playing simple games like skipping, follow the leader or catching beanbags plus a very strange balancing dance which looked very tricky. Not a mobile phone or gameboy in sight. The children in the classroom didn’t look quite so happy but they seemed to be under pressure to answer a confusing maths puzzle – which looked to us something like 15 divided by 3 but the answer turned out to be 4!! Oddly they all had hats and coats on but whether they spent all the school day wearing them because of the cold or whether they were about to go out we didn’t find out. We then moved on to try and visit the poorest family in the village accessing their ‘house’ via a steep drop and stepping over their wall directly behind the rear of a donkey! The family who agreed to allow us in to their home (again for a small donation) were an elderly couple and the gentleman had Parkinson’s – it was clear from the injuries to his face that he had taken a few tumbles down the steps from his home. I didn’t go inside because it felt intrusive for us all to do so but those that did found two basic rooms, beds on the floor and with pride of place given to a TV stood on it’s packing box.

The Great Wall Trek

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Members’ page

The saddest sight was a six foot hole dug in the garden which we were led to believe was to be his final resting place. As we left I handed the lady 125 Yuen – just £12.50 and when I looked back she had tears run-ning down her face. Had I upset her with too little? Or insulted her in some way? Appar-ently not, her tears were from happiness and relief, she could now get medicine for her husband. This whole day made my week’s suffering really worthwhile. Today was also the day I had my one and only blister. Day 5 and back to the wall we go today, this section is the touristy bit. All renovated and often visited by important folk from oth-er countries. President Clinton was amongst these but of course he took the cable car. 10 kms of steps today, much more traffic about as there are two cable car routes so we kept meeting several groups of tourists none of whom seemed to be finding it very hard work. Cheats the lot of them, shame I hadn’t realised the cable car was an option. Today’s goal was the Heavenly Stairway but because of some confusion my trainee guide didn’t seem to know just how far past the ca-ble car this was, in fact this was also his first time on the Great Wall of China so he wasn’t sure exactly what was expected. So when it looked as if there were another ten very high turrets of steps I was persuaded to wait at the cable car whilst the rest of the group did an ‘extra’ few sections. You can’t imagine my disappointment when I discovered the Heav-enly Stairway was actually in sight, only four or five turrets along. I would have made it if I’d had to crawl up on my hands and knees had I known but it wasn’t to be….. I’ll have to save up and return to China for that one another time.

Day 6 and we are now in Beijing visiting the capital city and the iconic buildings and ar-eas that once connected the City to the Wall, more walking, a few more steps but at least I managed to stay part of the group today. We can’t believe it’s over! Our treat for tonight is a Peking Duck Banquet which was very tasty but as with the Chinese food all week it was nothing like the meals you would get at your local Chinese. The only time we saw a Prawn Cracker was at a ‘Western Restaurant’ we visited for lunch. We also got a glimpse of the video and photos taken all week by the local photographer and for the first time I could see that the rest of the group hadn’t re-ally found it a piece of cake as many of them were caught collapsing against the wall and pausing to catch breath. All there was left to do now was enjoy our chosen few days extra – doing a bit more walking and eating a bit more Chinese food before the 11 hour flight back to Heathrow.

More China!In April this year I was very fortunate to take part in a charity walk of the Great Wall of China to raise money for Reach with ten other brave souls. I had been persuaded to take part by Simon Webster who I personally blame for all my blisters but I am eternally grateful to him, it was an amazing experi-ence.

Just a few weeks before we were due to leave a DVD popped through the post with images from a previous trip. With a growing sense of excitement I made myself a coffee, grabbed a handful of jaffa cakes, loaded the DVD into my Mac and sat back to enjoy the show. Within just a few minutes it was clear I had seriously underestimated how tough some parts of the walk would be. Picture after picture showed people much fitter than myself puffing and panting as they climbed endless steps and peered up at what looked like 1 in 1 inclines. Now I was worried. Per-haps I should have done some more training after all.

As the team gathered at Heathrow my fears started to recede as it was obvious most of us were in the same boat. It was also clear this was going to be a very good group of people to undertake a challenge with. The banter started almost immediately but amongst the jokes and leg pulling there was

a determination to succeed not just individu-ally but as a team.

On the walk itself there were so many memorable moments it would be impos-sible to list them all.There was the thrill of seeing the Great Wall for the first time, the buzz of standing on one of the watchtow-ers, turning round and seeing the wall ex-tend towards the horizon and knowing that we had just walked that, stopping for lunch one day after a particularly steep section when a chicken sandwich had never tasted so good. the unexpected snow flurries, the wonderful camaraderie of the other team members that encouraged me to keep go-ing when my spirits sank a little, the sight of Chinese soldiers racing towards us as we had accidentally taken photos of a military base, the early morning warm up exercises which kept the locals amused as we tried to balance on one leg for reasons that still elude me,downing a cold frothy beer after a hard days walking, striding out manfully after refueling at lunchtime only to be effortlessly overtaken by one of the guides who seemed to be wearing nothing more substantial on their feet than carpet slippers, being greeted by very friendly locals in all the villages we passed through discovering that I still had half a snickers bar left when I thought I had eaten it all the previous day, the cheers and encouragement from the team as each of us struggled up the last few steps of the steep-est part of the walk.

In the end the real highlight was being able to raise money for a wonderful charity. That coupled with getting to know a really great group of people made it a week I will never forget.

So that’s China done, where next?

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Anna Welch

This year Anna competed in her first gym competition. She was awarded a silver in both floor and trampette and a bronze in vault, giving her second overall in her category. Attached a photo of her be-ing awarded the trampette medal, with the other trampette winners. Thanks:

DEBBIE

Anna Gill

A quick further update for you. Anna has qualified for the Spring Championships and has also made the countries top 25 riders and will ride at the final Squad Selection at Hickstead on the 24-25th June. At stake is the GB Team places for the World Championships next year in Kentucky, USA. Making the top 25 is a major achieve-ment against all comers.

PETER

Kenton Osmond

Congratulations to long-standing member Kenton Osmond on his lat-est achievement Natalie Ann. Mum (and pround Nan) Ann sent us this lovely photo of the three generations.

The Grace Family - Fundraising Challenge

Dear Jane,We thought you might like to see how our family decided to rise to the 2009 members’ fundraising challenge. We are proud owners and operators of the Rushmere Railway (a 5 inch gauge track in our back garden) and operate two trains, an electric shunter and a steam 0-4-0 Loco, “Jennifer.” We also have a travelling track and were invited to take our trains “on tour” to Bawdsey Village Fete on the Spring Bank Holiday Monday, in return for a £50 donation to Reach. Here are pictures of our daughter, Jessica, driving the train, and also Jessica with big sister Katie and little sister Emily, along with train driver dad, Andrew. We had a very successful day, raising not only the £50 for Reach, but an additional £40 for the village hall committee. Regards, JENNY GRACE

Thanks also to the three girls for being our cover stars this issue!

12

Members’ page

13

NOTICE BOARD

Baby clothes offered - all with

altered right arm (son has

right arm to elbow) various

sizes.

Free to anyone who is inter-

ested, although donation to

Reach appreciated.

Contact Kirsten

01892 853731

(East Sussex)

Boy’s clothes - I have a couple of items of boy’s clothing that have been altered to fit my son and he has grown out of them. I wondered if anyone could use them as I would love to have had some-one pass things on to us, especially coats. He has a suit, aged 14, and a Gap rugby shirt. I can forward on pho-tos if you would be interested. Please contact Sue at Head Office for our con-tact details.

Chris and Michael Clode Shrewsbury

New BranchThanks to Simone Carter for becoming the new Branch co-ordinator for Hertford-shire. Contact details on page 3.

Kevin Laue, a 6-foot-10 cen-tre whose left arm ends at the elbow, was often told he would be an N.C.A.A. Division I basketball recruit if he had two hands.

It turns out the second hand was not necessary. Laue, who is from California, has ac-cepted a scholarship to play for Manhattan College next season.

This photograph is one of a series

showing this man mending a punc-

ture with his feet in the Far East. With

only one fully functioning limb he

manages to remove the inner tube,

find the hole, patch it and replace

the inner tube inside the tyre. Truly

inspirational and yet another exam-

ple that where there is a will there is

a way! Nothing is impossible.

Scottish Branch Golf day:-At the Dundonald Links Golf Club, in Ayrshire is open to all Reach members. See www.reachscottishbranch.co.uk

Don’t forget!

AGM-AGM-AGM

& Family Weekend

Dublin

Ashbourne Marriott

23rd - 25th October

BOOK NOW!

Please send any items for the Noticeboard to: withinreach@reach.org.uk

14

Thanks!

t The Roscoe family for their £100 donation.

t The Rose & Crown, Hemel Hempstead for raising £291.00.

t An anonymous donor who passed on the £50 his bank gave him to compensate for messing him around.

t Tanya Elsworth for a £78.40 donation from the students and staff at Joseph Rown-tree School, New Earswick, York where she teaches. Tanya explained – “Just before Easter I gave an assembly to each year group about people with upper limb deficiency and talked about how people cope very well with them. I then told them about my son Joe and the number of operations he has had and how he spends so long trying to be as independent as anyone else. I then discussed reach and the work that you do supporting children and families. At the end of the assemblies I said that if anyone had any loose change that they wanted to donate, that I’d ensure that it got to Reach. The students donated some money at the end of the assemblies but several Tu-tor Groups went away and had their own col-lections and Year 9 have said they want to adopt reach as the Charity that they want to fundraise for this year (so there may well be more money on its way). Joe continues to be an inspiration to us, he recently spent twenty minutes unwrapping a Baby Bel cheese and was so proud to have done it on his own, and although we haven’t yet attended any reach activities, the Newsletter and website provide support and help when it is needed.”

t Delta Force, World Class Paintball Enter-tainment for the free tickets.

t Mr & Mrs M J Arnold for their donation of £50.00.

t Mrs S Smith for the £102.90 donations on behalf of her late father Sydney Bulmer.

t Downview Primary School, Felpham, Bog-nor Regis who ran a tombola and cake stall at a Fairtrade fair and raised £65.

t JF Wiseman trust for £800 donations.

t Jean Smith for her donation of £120.

t The brethren of the Royal Order of Scot-land for a donation of £250.

t Jean Bleach for £25 in memory of Ernie Glynn.

t Tulchan Communications for sponsoring Aisling Cashmore £1000 in the London Mara-thon.

t Regular supporters P&H Snacksdirect for their latest donation of £212.

t Michael Street for his donation of £100 fol-lowing a wine tasting with Charlotte Fielder.

t Roger & Joyce Greenhow, grandparents to Alistair Hume, for their donation of £20.

t Gamma Global for a donation of £500 on behalf of Tracey Smith.

t Castle Donington Community College, Derby for £167.55 raised by the pupils for Reach.

t Year 9 at St Thomas More School, Buxton who ran a lunchtime Cafe (Cafe 9) and raised £226.60 – the result of lots of chocolate drinks, Jaffa cakes and washing up.

t Sam Dumper and friends for raising £200 at a skittles evening.

t Kathy Stockdale for a donation of £200.

t Nick Yarham for taking part in the Stroud Half Marathon last October and for raising over £650.

t Jeanne Wemyss for the donation of £439.12 collected in lieu of flowers in loving memory of Reece Wemyss, Grandpa of six in-cluding Reach member Cameron.

t Year 11 girls of Merchant Taylors School, Crosby, Liverpool for their £46 raised by orga-nising a ‘Staff Olympics’.

t Gill Fairless & Corby Old Village Primary Schools Mums & Tots group for their donation of £50.

t Mike & Heather Snelling who on celebrat-ing their Ruby Wedding anniversary asked for donations to Reach in lieu of gifts raising £180.

t Sarah Birch for taking the plunge – out of an aircraft to do a sponsored sky dive for Reach raising £1290.

Our thanks not only to the following people, but to all those who give so generously to Reach funds. This list is a selec-tion of some of the donations received in the last months and is intended to provide a picture of just some of the many imaginative and varied activities that take place to raise funds for Reach.

t Kay Perry who sent us £150 raised from the sale of cufflinks donated to the Nuneaton Register Office. Thanks also to the Brides & Grooms who helped to raise this money.

t Roger Lawrence for taking part in the London Marathon raising £2000.

t Burnett Masonic Lodge, Bristol for the £367 donation raised during a social eve-ning attended by Sue Dumper.

t Norwich Union & Royal Bank of Scotland for £373.85 collected at a casual wear day held at their Trinity Quay branch.

t Lisa Lisney for once again running the London Marathon raising over £800.

t Claire Botterill for a £70 donation in lieu of floral tributes in memory of Frederick Brown.

t Peter Hubbard for a £50 donation.

t Tracey Smith & Jo Paling for once again holding the Annual Charity Dance at the Land Rover Club, Solihull and raising £1586 for Reach.

t Stephen Emmott for the donation of £131 in memory of the late Mrs Eleanor Em-mett.

t St Piran’s School and the London School of Commerce for their £1000 donation to-wards RAW 2009.

t Jenny Grace for the £50 towards this year’s 2009 Fundraising Challenge. This was raised by taking their 5” scale ride on railway to a local fete in return for a donation from the organisers. See page 12.

t Stephen Payne for joining our regular monthly donations scheme and for his dona-tion of £48.

t Donald & Elaine Cairns for their £20.09 donation for 2009 Challenge.

t Jossie Madden & friend Lizzie who held a cake sale at school, Prebendal School, Chichester and raised £115.

t William Grant & Sons who operate a Recognition Award scheme where employ-ees are rewarded for their commitment and-dedication to the Company. The winners are asked to nominate a charity of their choice to receive a donation. Ian Bissett kindly rec-ommended Reach, thanks Ian. t New College & IDC students and Brenda Kelligrew for £350 raised at their end of the year Fashion Show. Trustee Julie Detheridge and her mum went along to the show and Ju-lie tells us it was a wonderful evening, hats, costumes and fashion designs were excel-lent and it was especially nice to see a num-ber of mum’s fascinators being modelled in the show.

t Paignton U3A ( UNIVERSITY OF THE 3RD AGE) for a donation of £143.

t Linda Kidd and friends who raised £190 with a jewellery party.

t Selex Galileo who donated £55 towards the Scottish Branch Ceilidh night.

t Alex Gillies who kindly raised £1300 with a sponsored parachute jump.

t Suzanne Chow and Stathclyde CID who kindly donated £500.

t To all our magnificent Marathon runners; Lisa Lisney, Michelle Frost, John Frost, Ashling Cashmore, Kelly Headland, Nicolas Vergnes, Steve Hopkins. Without their efforts we would find it harder to func-tion as a charity. All those sore feet and ach-ing limbs are much appreciated.

t To our patron Laura Hamilton who so far has raised £500 by running the British 10k.

t To all the participants in the China Trek, another huge fundraiser for us; Simon Webster, John Woodworth, Paul Halli-well, Dave Murphy, Claire Hermon, Ant-ony Hermon, Ben Golledge, Jon Stokes, Steve Jones, Tim Smith and of course our National Co-ordinator Sue Stokes.

Don’t forget you can also raise funds via our collecting boxes, saving stamps, saving printer car-tridges, using Everyclick as your search engine, doing the Weather lottery and making donations or even running a marathon on stilts! For further details please see our website:

www.reach.org.uk

15

Yippee! We repeated our very successful outing to Woodlands Fam-ily Theme Park on 7th June. Nearly 60 of us turned up on what was surprisingly a lovely sunny day in what had been a wet week. Families went on rides, got wet on the water slides, dried out again in the sun, drove tractors, boats and toboggans and generally had fun. We all met up for a picnic lunch on the grass before moving on to the animal park to see the baby alpacas, the new meerkats and various other furry and scaly things.

My son Elliott gave us an animal talk and we watched him feeding rats and mice to the snakes, which the kids loved, but made some of the parents squirm! He got some snakes out for us to handle, which certainly sorted the men from the boys amongst the Dads. Strangely most of them promptly stood back at that point to let the kids have a go. Some members then went down to the falconry centre to see the birds of prey being flown, and to handle the owls. A great time was had by all, and it was fantastic to welcome some families who hadn’t met before and introduce them to one another. I think we all got sunburnt.

I intend to organise another outdoor event and suggestions so far have mostly been for Paignton Zoo. If you have any other ideas please let me know, bearing in mind that people have to travel from as far afield as Land’s End and Bristol, and the venue has to be able to accommodate a large group. Then there will be another craft day in Exeter in the Autumn and the Christmas party in December, dates to be confirmed. You can text on my landline if you wish. See you at the next one.

JILL

Our last meeting was on Saturday 23rd May at Barton Aerodrome, Manchester. This was made possible by a charity named “Aviation without borders”, they have organised trips for Reach branches be-fore.

What a wonderful day they had in store for us, the trip was age specific due to the flying element. We arrived in the morning to look around the aerodrome and were given lots of information about aero-planes and shown some small aircraft in the hangers. The children got to sit in some of the aircraft!

We then saw the watchtower and the air traffic controllers, and then the fun began when each child and an adult got to fly for 30 minutes in one of the four-seater aeroplanes! Whilst some were airborne the others had lunch, which was also provided by the charity.

One of the children described the day as “the best day of his life!”My grateful thanks once again to Stan and the rest of the team at Aviation without borders, whose hard work and dedication make days like this possible.

Any ideas for future meetings please get in touch.

CHERYL DANSON

16

Branch News Branch News Branch News

North East BranchDevon & Somerset Branch

Please send Branch News to our new email address: withinreach@reach.org.uk

17

Hi Everyone!

A date for your diary and please could I ask you to let me know if you can make it.

Saturday, Sept 12th; gather at Tenterden Town Station from 10.30 a.m.; to Bodium on the Kent & East Sussex Railway, 11.45 a.m.; vintage steam train return journey; ‘Hoppers’ Living History Event at Bodium Station; visit Bodium Castle & the armoury, with dressing-up activity; bring picnic lunch; return to Tenterden for 4.15.

We’ve already paid for twenty places for the children on the train; I’ve also reserved twenty adult tickets, at £7.94, payable (via me, in cash please) on the day. Entry to the castle is free for all, there’s a charge of £1 for entry to the armoury, but again Reach will pay for all the children.

I’ll send out the detailed invites later but it would be helpful if could you let me know asap if the date’s ok. Warm regards,

ANDY

ANDY

Hello to Everyone!Time flies and as yet we haven’t met this year, due to unforseen circumstances.

Dates for future meetings this year are as follows;

July 12th 2-4pm Slaley Hall Hexham for outdoor activities quad bik-ing, 4x4 off road driving and rifle shooting. This event is aimed at our older members as it is very important to keep them interested! However all welcome. Meet at the pursuit centre for 1.30pm.

July 26th 10.00am Diggerland Co Durham, meet at the main en-trance.

Christmas party date to be confirmed.

Hope to see you all soon

JOANNE

The Scottish Branch was saddened to hear of the loss of Craig and Adam’s Grandmother who has been a loyal supporter of the Scottish Branch of REACH. Due to the success of the Scottish Branch family weekend we decid-ed to return to Abernethy trust Ardeonaig again this year. Ten fami-lies are planning to attend, even Beth who is home from Saudi Arabia for the summer. There are the usual outdoor activities and games planned for the weekend. I am sure it will be very wet weekend with the parents causing the most mayhem out on the water. Eddie Berry and I are currently arranging a Golf Tournament to raise funds for REACH. This will be held at the prestigious Dundonald Links course in Ayrshire. The cost is £250 per team of four. Price includes tea/coffee and a bacon roll, a round of golf and soup and sand-wiches afterwards. There will be various prizes through out the day. Application forms are available on the Scottish branch website. Scottish Branch members between 6 and 18 years old were invited by the Douglas Bader association to a Young Aviators day at RAF Kinloss. Members are invited to experience taster flights with music, entertainment and a picnic lunch provided. Further events are being planned and Scottish Branch members will be updated in the next issue of the Scottish Branch Newsletter. More news and photos are also on our website:

www.reachscottishbranch.co.uk

Kind Regards,

CARL ROULSTON

Branch News Branch News Branch News

Kent Branch North East Branch

Scottish Branch

I must start by saying a special thank you, on behalf of all East An-glia branch members, to Mrs Jenny Belding, grandmother of Reach member Bethany Rose. Mrs Belding celebrated a Significant Birth-day in April and asked all those attending her celebrations to make a donation to Reach in lieu of presents, raising a magnificent £500, which she kindly donated to the East Anglia branch. On 26th April 5 families met at Northgate Sports Centre, Ipswich for the East Anglia branch’s Spring get together. The dozen youngsters had a great time playing on the inflatables and trampolining, and here’s a photo of some of the tired but happy crew. One of the mums also had a go and I have the photos to prove it, but have been bribed not to publish! Future dates for your diary: Saturday 12th September - Bewilderwood “a curious treehouse ad-venture” at Hoverton near Norwich. We plan to meet at midday to picnic and and have fun exploring the adventure woodlands. Saturday 12th December - Panto at the Theatre Royal, Bury St Ed-munds - Jack & the Beanstalk, with a meal afterwards at Frankie and Benny’s. I will be writing to all branch members with details but if you haven’t heard from me do please get in touch. Finally, a big thank you to all branch members who support events by coming along and by fund raising efforts. As ever, if anyone has any ideas for venues or activities for branch outings, do please let me know.

JENNY

The big news for our branch this summer is an incredibly generous donation from my daughter Jennie’s dance teacher. We were just chatting and I mentioned how much both dancing and Reach had contributed to my daughter’s confidence, and next thing I know she is offering to produce a show and donate all the money raised to Reach!

The Annabelle Watson School of Dance in Farnham Royal put on the show in Maidenhead, featuring more than a hundred students varying in age from 3-18, and with the help of all the parents making costumes and helping backstage (I made the teas and sold cakes in the interval!) made £800 for Reach – which is phenomenal. A really special thank you must go to Annabelle who slept for only 45 min-utes the night before the show and barely sat down for week before that – she was marvellous. Half of the money will go to Head Office but the rest will be put to good use by the branch – and that started in June with our traditional picnic at the Thames Valley Adventure Playground.

For the first time this was fully funded and we all had a terrific time. Several new members came and found meeting the experienced Reach members really valuable. One of the new families has been offered finger extensions – where the bone is broken and the fin-ger stretched so that the bone can grow in between and effectively lengthen the finger. Do any of you have any experience of this, as they would love to talk to someone who has had this done. Let me know and I’ll pass on your details.

18

East Anglia Branch

Branch News Branch News Branch News

Bucks, Berks & Oxfordshire Branch

At the time of writing I am also planning something that will hopefully attract some older reach members sno tubing at Bracknell Ski Slope in Berks on Sunday 5th July at 12pm. Look at http://www.bracknellskislope.co.uk/ski_and_snowboard/sno-tubing http://www.bracknellskislope.co.uk/ski_and_snowboard/sno-tubing to see how much fun it will be. We will have an hours tubing, then a party lunch. I have no idea how many people will want to come to this so let me know asap, and at first it will be just for Reach children but if I have space left over siblings may come as well. Adults can have a chat and a coffee whilst they have fun.

If any members have any ideas about what events they would like please call for a chat!

CLAIRE

Hi All, well we are now halfway through the year and have two suc-cessful events under our belts:

Spring Walk and Picnic, Alice Holt, Sunday 19th April

In order to cater for any eventualities with the British weather, we hired the ‘Forest Room’ as a base. We all enjoyed a picnic lunch and then ventured to the playground where the children had a great time. After adventures in the playground we headed off for a short walk to tire the children out before their journey home!

All the children went away with strawberry plants to grow at home and hopefully they will soon be able to enjoy their home grown fruits.

Swimming at Energique, Saturday 27th June

Sole use of the pool was hired for 2 hours. 6 families attended the event and thankfully the weather was good to us so we were also able to make use of the outside space too. Refreshments and nib-bles were provided for the hungry swimmers and Energique gave us use of their toys and floats and the children had a great time playing and splashing around and hopefully slept well for their parents as a result that night! All of the children were given a swim noodle/woggle to go home with to remember the day.

The next Branch Newsletter will go out this month providing informa-tion on the events for the rest of the year but in summary dates for your diaries are:

Dates for your Diaries for 2009

Sports Day & BBQ, Wherwell Cricket Ground, Saturday 5th Septem-ber, 12 – 5pm

This is going to be a great day of fun for all the family so please dress in comfortable clothes and shoes ready to take part!

There will be various activities to take part in and in order to make it a full family day of fun, we thought that it would be nice to have a BBQ to start the day off. Sausages, burgers and rolls will all be provided along with tomato and brown sauces and mustard. There will also be some refreshments provided. Please will you bring for your family any salads or other accompaniments in addition to those mentioned above.

There is a charge of £2 per person for the event payable in advance to Reach. If there are any other branch members (outside of Wessex) that would like to join us, please contact us at:

wessexreach@live.com.

NB: Please advise us of any special dietary requirements i.e. veg-etarian, diabetic

Calshot – Over 10’s Activity Centre, TBC, November

November – date and full details to be confirmed

Christmas Party, Sunday 6th December

We are in the process of finalising the details for the party which will be held at Intech on December 6th. Further details will be provided in the next Branch Newsletter, any Reach members not in the Wessex Branch but who are interested in coming, please let us know ASAP.

In the meantime, we can advise you that we will be holding a raffle at the event and, if you are able to donate any prize, please let us know at any time as we are collecting them from now on!

If anyone has any thoughts, comments and suggestions at any time on anything, please do not hesitate to contact us by email to: wessexreach@live.com or by post to: The Haven, Bentley, Nr Farn-ham, GU10 5HU

We look forward to seeing you soon

Warm regards,

KATE & CARA

19

Wessex Branch

Branch News Branch News Branch News

Trent International Prosthetic Symposium – TIPS 18th – 20th May 2009

This symposium is the only one of its kind to be dedicated to upper limb prosthetics and draws professionals in the field from all over the world. Reach was delighted to be part of the exhibition and to have the opportunity to listen in to the many and varied speakers, increasing our knowledge of what is available and the research and development going on. With approximately 20 talks and two guest speakers each day it isn’t possible to give details of them all but I’ve tried my best to summarise and condense the symposium.

Monday – In the morning our opening guest speaker was John Miguelez founder of Advanced Arm Dynamics in 1998. He has spe-cialized in upper-extremity prosthetics for 18 years. His talk was on the State of Science where he assured us the field of upper limb prosthetics was strong. He believes this is a time of revolution in the field and that both the future and the present are exceptionally bright with investment heading in to the field. There followed a number of interesting papers but many of the projects are adult based and are only in very early development stages.

During lunch the exhibition was open so a quick grab for a plate of sandwiches and I was at post ready to greet the crowds. There was quite an interest from professionals from other countries with the recurring conversation that they wish they had access to an or-ganisation like Reach out where they came from. It would seem that many countries do have small groups of parents who offer each other support and adults who are happy to share experiences but what they don’t have is a structured administration bringing every-thing together and providing leaflets and other supporting informa-tion. Seems I’m rather unique – but we all knew that didn’t we and I’m only joking, I would not take all the credit for Reach being a fantastic organisation.

After lunch our guest speaker was Dr Stephanie Lacour from the University of Cambridge. Her talk was around what she deemed to be a remaining challenge to produce limbs that would ‘feel’ and she broke this down in to two challenges 1) preparing an electronic sen-sory skin that looks and senses like human skin, and can wrap every contour and move in tandem with the prosthetic limb; 2) developing long term neural interfaces for natural feedback.

Marnie Punchard, Lead Prosthetic Therapist at Exeter Mobility Cen-tre gave a presentation on whether wearing a prosthesis had an effect on how a child or parent copes with congenital upper limb de-ficiency, she has also agreed to make this presentation to us at our Annual conference. Dr Soori, Consultant in Rehabilitation Medicine at Roehampton gave a talk on over use symptons and suggested that even those patients who wore artificial limbs could suffer from some over use. He did point out that articles and research on this subject remain limited but at Roehampton they are trying to become more proactive in looking for ways to lessen any over use issues patients

might experience. Two senior prosthetists from Edinburgh gave us an evaluation of the Regal gloves which according to them have a better skin tone, nails and durability but are cost effective as they last longer.

Back to the exhibition area for coffee break and more professionals seeking information and answers to specific patient needs. Quite a few of these seemed to be in connection with multi limb deficiency and this is an area we have tried to look in to many times. The defi-ciencies are so different between individuals that it isn’t easy to come up with a solution. Foot use is often the answer but is much more successful in congenital cases being much harder for Traumatic loss especially in adults. I wasn’t able to answer all the questions but it was satisfying to be able to point most people in the direction of some one that could help. Usually someone else at the Symposium.

One paper that touched on an area Reach has been interested in since our involvement with the Hungarian Foundation for Limbless Children, was given by Mary Jane Cole, Physiotherapist from Roe-hampton Rehabilitation Centre. Historically, therapy input to patients with upper limb loss or absence has been the remit of the Occupa-tional Therapist especially for congenital deficiency. Queen Mary’s Hospital Roehampton presented this paper to outline standards es-tablished for physiotherapy practice for upper limb patients attend-ing their centre. Let’s hope this is an incentive picked up around the other centres. Frank Letch who was in the room made the sug-gestion that as in Hungary parents of all children with limb defects should receive a plan of physiotherapy exercises that would benefit the children.

Tuesday – and the day opens with guest speaker Frank Letch – I hardly need to say anything further as we all know him! The free pa-per sessions covered a number of innovations in other countries but two particularly interested me. Dr Soori presented the paper on the I-Limb with the aim of sharing the experience of prescribing expen-sive special components not generally available via the NHS because they would be considered too expensive to be supplied through serv-ice level agreement by most NHS centres unless a very robust ap-plication could be made to the PCT commissioning panel responsible for exceptional treatment. This panel would need adequate clinical information, justification for the supply and published evidence of the products success. These high cost components can‘t routinely be supplied from existing centre funds because this could well mean other patients not receiving a limb at all. Christina Ragno presented the paper on home modifications for patients with Multi Limb defi-ciencies, again these were adult patients who needed specific items around the house to help with their independence but very little of what was installed for them was specifically designed for disabili-ties, it was more a case of using common sense and experience to identify which products suited best. One area Reach has only a small information base about is in relation to helping those with more than one upper limb affected and I think the centre in Sweden could be a very useful source of information for us when we get future enquiries.

20

Trent Symposium

After a further exhibition period back to a number of papers includ-ing one on creating an informational interactive DVD resource for children with limb deficiency from Preston DSC (I hope to try and find out more about this and perhaps review a copy) and Family Picnics with children after upper limb amputation from Sweden, something Reach does a lot of, interestingly many of the children at the picnics were wearing artificial hands in contrast to a lot of our similar events where very few do. Also training with cosmetic prosthesis where it is recognised that many patients can and do ‘use’ their cosmetic arms almost as well as some functional ones, Clinical Experiences of Mirror training to help reduce phantom limb pains and a further presentation about the EX-Centre (Centre of Excellence) founded in 1993, for children and adults with multiple extremity deficiencies. The target groups for this centre are Thalidomide victims, people born with congenital malformations (Dysmelia) and people with am-putations whether caused by trauma, tumour or other disease, all three of these papers were from Sweden. Following lunch and more exhibition time I was able to chat with the ladies from EX-Centre, Sweden and get them to provide me with their information and con-tact details.

Wednesday morning saw us back in the conference room ready for abstracts on Management of a child with a right sided hemiplegic who also has a left above elbow deficiency and visual impairment. As this child’s right side was seriously affected it was important to try and get function through a prosthesis for his left side – a very challenging case indeed. Then a further case study of an adult who had lost both hands because of severe rare genetic disease, Epider-molysis Bullosa. Conventional artificial limbs could not be used but the centre in Slovenia came up with custom made wrist and hand orthosis to aid he independence in most basic daily activities as well as gardening. John Ronald from Nottingham told us about a patient who sustained injury at work resulting in loss of his left hand. This patient lived alone, wanted to be self sufficient, get back to work and continue his hobbies including riding his motor cycle, guitar play-ing and competing in twelve bore shot gun competitions. He also wanted as realistic looking a hand as possible. Compensation claims provided him with funding and the centre were able to provide for all his needs. Interestingly he has an I-limb but does not use this for play-ing his guitar, riding his motorcycle or shooting his gun. It was useful around the house and looks good but was not heavy duty enough to help him at work where he needed a heavy duty Greifer.

This sessions most interesting paper, for me, came from V MacEachen, WestMARC, Glasgow; the paper was entitled Custom-made silicone liner prosthesis for congenital infant; a case study. Vincent is a Prosthetist treating a 9 month old child with a trans-radial deficiency (Below Elbow), although there is still work to be done identifying the pros and cons WestMARC still prefer to fit chil-dren early and the child was fitted with a 1-piece cosmetic passive prosthesis with a 2-way stretch sleeve which means no harness is needed. However, as happened with this child these are easy to pull off and many young children do just that – as they would with

sunhats, socks etc. Vincent decided to try and address this by creat-ing a socket that was better fitting, more comfortable for the child but more secure in the fitting. He achieved this using a silicone lining and the end result was very successful. Unfortunately the child still didn’t want to wear it and showed this by crying, the parents decided to give prosthetic wearing a miss for now. From his presentation it was clear how disappointed Vincent was but he did wonder if earlier fitting of this new silicone socket would have led to a more success-ful conclusion. I asked him afterwards if he would go straight for the silicone socket with his next baby and he assured me this was his intention and he’d be interested to see if this made a difference. An interesting speaker and topic for a future AGM I think.

Conclusion

Although much of what was presented was from outside of the UK and adult related it was encouraging to note that research and devel-opment in upper limb prosthetics is alive and kicking along with many innovations for individual solutions. One worrying theme that kept popping up was the lack of use of prosthetics by patients/clients es-pecially children and young people with congenital deficiency. Whilst Reach does not come down heavily on either side of this debate be-cause we know just how personal a subject this is to each individual there are points I feel we should make. • If we want a Limb Service on the NHS then there has to be a need for it.

• None of us can see in to the future, we do not know what challenges our children might choose for themselves, what career path they may want to follow. Many of these paths can be walked one handed but some may not be accessible, we don’t want to be closing any doors.

• We all know how well they manage to compensate and find new ways of accomplishing tasks but do we keep an eye on just what that compensation is doing to the rest of their body? As yet there hasn’t been enough research to clearly say whether wearing a pros-thesis or not causes over use of the sound side or problems with the back but maybe we should put more thought in to overall posture.

• Whilst none of us like to see our children upset we know we can’t always give in to tears and tantrums. How many times do we as parents have to put hats back on heads either to protect from sun or cold, how many times do we return gloves to cold hands, shoes & socks to feet, in some cases clothes to bodies. How many hours do we spend encouraging the spoon in the hand to the bowl rather than fingers? Do they like it? Not always. Do we give in and let them walk barefoot forever, never use cutlery, go around unsuitably dressed? Parenting requires tough love sometimes.

SUE STOKES

Trent Symposium

Out and About

How strange that in the last edi-tion of Within Reach our Chair-man should mention in his “blog” (whatever a blog is) that there is concern in high places at the lack of prosthetists. I say strange because in April and May I was a guest speaker to two groups of prosthetists. In April I made my annual pilgrimage up to Glasgow, to the University of Strathclyde to give my annual talk to the third year students studying prosthet-ics and who number at least twen-

ty. These young people all want to be prosthetists so the problem is probably not personnel but rather money to pay for the jobs.

In May I was the guest speaker at an international conference in Loughborough where I spoke to 130 delegates who are all profes-sionals bound up with caring for upper limb amputees. It was quite a challenge to give my “feet first” talk, showing how I live a full and active life without a prosthesis, to people whose livelihoods depend on making, prescribing and training people with prostheses. The talk seemed to go down well and I have been asked by a delegate from Ireland to go over to the University College of Dublin. As yet no invita-tion from the USA, Australia or the Caribbean! I live in hopes.

I have done very little fundraising recently but I did have the opportu-nity to talk in Paignton to members the University of the Third Age, or U3A. They were an interesting and generous audience, donating to almost £150 to Reach. For several days now I have been filmed by a television crew who are making a documentary about my life that will eventually appear on Welsh television, so most of you will be spared watching it! I am also to feature in a BBC documentary about Ali Abbas who was badly injured in the war with Iraq. Life continues to be full and FUN.

FRANK

Making waves

One area of our charity work that has been discussed from time to time is campaigning. Given that we are such a small charity the question of whether we should utilise our scarce funds for political lobbying is a controversial one. It is particularly relevant now when we know that that the Primary Health Care Trusts are under great pressure and that the provision of prosthetics is also under threat. At present we do what we can without committing funds and have been successful in raising awareness particularly concerning the provision of prosthetics (see Chairman’s blog Within Reach Issue 109). If this is an area that interests you the question of charity lobbying is con-sidered at:

http://www.bbc.co.uk/blogs/thereporters/markeaston/2009/04/charities_and_politics

Payroll Giving

Payroll Giving is an easy way of making a regular donation to the charity of your choice by having a sum deducted from your salary each month. You can download the form and full details on how to set it up from the website. If you are not PAYE, self employed people can donate when making their online tax return. You can also have any tax rebate that you may receive paid directly to charity as well. You just need to advise the Inland Revenue and quote a reference number. Again all the details are on the website and can be found in the fundraising section. Saving stamps

We can make about £200 per year from this valuable collection of nothingness and I am pleased to say that many of you are still send-ing stamps on a regular basis. It is, of course, far more convenient for me if the stamps arrive sorted into the three types:

• UK definitives • UK commemoratives • Foreign

In this way the dealer to whom I take the stamps, gives me far more than he would for just mixed bags. However, if you are unable to sort them, please do still send them in, they can still generate cash for Reach. I would, however, ask that the stamps do not have too much envelope attached. I recently received a large bin bag full, but the stamps in some cases had at least half the envelope, back and front, still attached and the dealer will not accept these at any price. Please leave no more than one inch around the stamp, with only the front of the envelope. I can then keep the stamp dealer happy.Meanwhile, thanks again, and please keep the stamps coming in to me:

Dave Haughton‘Derwen’, West Lane, Keeston, Haverford-

west, Pembrokeshire, SA62 6EH.

Recycling Printer Cartridges & Mobiles

Simply send your old cartridges to us and we will do the rest. We can recycle any laser printer cartridge and any make of ink jet cartridge except Epson. Mobile Phones too! What did you do with your old mobile phone when you upgraded? If you shoved it in the back of a drawer and forgot about it, we can recycle that too. Phones with their charger are ideal, but any mobile can be recycled. Whatever you do, don’t just throw it away as the nasty chemicals in the battery cause serious problems for the environment. Send cartridges and phones to:

Reach Recycling, PO Box 54, Helston, TR13 8WD

Why not consider placing a recycling box for these items in a local store or at your workplace? Or you could advertise this facility in your local church

magazine or village newsletter. Every bit helps!

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Out and About

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Book Launch

Shared ExperiencesThe experience of having and parenting children with limb

deficiencies

by Charlotte Fielder

The experience of having and parenting

children with upper limb deficiencies

Charlotte Fielder

[This book] “should be compulsory for all health care professionals interacting with children with congenital differences, and their families” Professor Simon Kay, Consultant Plastic Surgeon.

In 2006 Charlotte Fielder hosted a parenting workshop for Reach. Inspired by the stories she heard, Charlotte saw a way of supporting these families. She invited the parents of children with arm and hand deficiencies to share their experiences of parenting. Parents from across the UK and Ireland responded with incredible honesty and a strong desire to inform new parents, health professionals, teachers and a much wider audience of what it’s like and how it feels. Having been born with a missing left hand, Charlotte has a natural understanding of the issues and has been able to bring together the many and varied responses in a way which offers valuable insights into parenting visibly different children.

These parenting experiences have been crafted together in a unique book which will be published Summer/Autumn 2009 RRP £10 plus p & p. All proceeds to REACH.

To pre-order please email: shared_experiences@reach.org.uk

or visit the website www.reach.org.uk

● Honest and heart-warming personal accounts that will make parents realise they are not alone dealing with disability.

● Full of anecdotes and practical advice on what has helped families come to terms with a new and unexpected experience.

● A highly readable commentary bringing the individual stories together with the additional insight of the author herself.

● An invaluable book that new parents and health professionals alike should not be without.

TThe experience of having and parenting

children with upper limb deficiencies

Charlotte Fielder

8K5Physolino Baby Hand

Otto Bock Healthcare Plc 32 Parsonage Road, Englefield Green, Egham, Surrey, TW20 0LD

Telephone: 0845 430 1231 Telefax: 01784 744 901 email:bockuk@ottobock.com website:www.ottobock.co.uk

Otto Bock’s new Physiolino Babyhand is well suited for the initial fitting of infants and toddlers between the ages of 6 and 18 months.

Fitting with the Physolino Babyhand can prevent incorrect posture and promote the development of movement and muscle function and also helps to create a more natural appearance. Shape, colour and surface of the Physiolino Babyhand are reproduced according to the child’s natural hand.

The fingers are soft and flexible, yet strong enough to grip and tightly hold toys or other objects with both hands. Infants can even crawl with the Physiolino Babyhand.

The Babyhand is made of medical silicone and is so durable that natural behaviours of sucking, chewing or biting can‘t damage it. Plus, the Physiolino Babyhand is easy to clean.

For more information visit www.ottobock.co.uk or contact your consultant or prosthetist.

Let’s Play!

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