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withinReach Overcoming prejudice Proving ability

Spring 2020

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Thinking positive

Issue 143

Helping children with upper limb differences live life without limits

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


withinReach Please send photographs and stories for withinReach to Jane Garrett, addressed to:

Comments, articles, requests, ideas:

The Editor, withinReach, 2 Farmside Cottages, Hound House Road, Shere, Guildford, Surrey GU5 9JG or via email to: janeg@reach.org.uk

Letters:

Tel: 01483 203237 Mobile: 07884 268594

Inside Issue 143

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Our new Chair

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Coronavirus update

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Miles Harrison, mountaineer

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Bursaries and the panel

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Two inspirational teenagers

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Big welcome to new members Thank you for fundraising Thank you for fundraising

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DLA Advice

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Reach 5 year Strategy

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Hands for partial hands

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Branch and members' news

Reach, Tavistock Enterprise Hub, Pearl Assurance House, Brook Street, Tavistock, PL19 0BN Tel: 0845 130 6225 From a Mobile: 020 3478 0100 Email: reach@reach.org.uk Office hours: Monday-Friday 9am-4pm website: www.reach.org.uk Follow us on twitter: @reachcharity Facebook: www.facebook.com/reachcharity Registered charity no. 1134544 withinReach magazine is printed and distributed by NRG Marketing, 209 Aldwick Road, Bognor Regis PO21 3QG

We welcome comments, articles, requests or suggestions for future editions of withinReach.

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 1,600 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.

Reach membership

Membership of Reach is open to parents of children with upper limb difference 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 difference. The UK subscription is from £36 (£35 if paid by direct debit) and the Ireland subscription is €45. You will receive three issues of the magazine a year.

Reach Insurance This covers any member aged between 2 and 85 years of age resident in the UK with a congenital difference of one upper or lower limb or both upper limbs or who have had one upper or lower limb or both upper limbs or one hand amputated. There is a slight difference in cover for under 16s and those not in paid employment at the time of their accident. Please call Head Office for more details about the schedule of insurance.

BE PREPARED BEFORE YOU GO TO YOUR CHILD'S ASSESSMENT If you’re preparing yourself and your child for a paediatric assessment for equipment or adaptations, the BHTA has created this handy guide for professionals, parents & carers of children with a limb difference to help them understand what an assessment is and what outcomes should be achieved. For information, visit: http://bit.ly/2M6u7Hn


BRANCH CO-ORDINATORS 3 Counties Herts, Beds & Bucks Branch Co-ordinator: Kelly Galley 3counties@reach.org.uk with

North London: Branch Co-ordinator: Kavita Reese northlondon@reach.org.uk

Jennifer Davies 3counties@reach.org.uk

Northwestern: Branch Co-ordinator: Cheryl Danson northwest@reach.org.uk

Berks, Oxford and Wilts Branch Co-ordinator: Joanne Taylor berksandwilts@reach.org.uk

Scotland Branch Co-ordinators: Mags Millar scotland@reach.org.uk

with Debby Cullen berksandwilts@reach.org.uk East Anglia & Essex Branch Co-ordinator: Rachael Collier eastanglia@reach.org.uk with Laura Hanley eastanglia@reach.org.uk

East Midlands Branch Co-ordinator: Andy and Becky Forshaw eastmidland@reach.org.uk Ireland Branch Co-ordinator: Lorraine O’Farrell ireland@reach.org.uk with Donna Flynn ireland@reach.org.uk Gloucestershire Branch Co-ordinator: Lee Harvey gloucestershire@reach.org.uk Kent Branch Co-ordinator: Martine McCahon martinemccahon@yahoo.co.uk Northern England Branch Co-ordinator: Suzanne Parker northernengland@reach.org.uk Northern Ireland Branch Co-ordinator: Ruth Hompstead northernireland@reach.org.uk

with Stephanie Tennant scotland@reach.org.uk South London: Branch Co-ordinator: Charlotte Bachelor southlondon@reach.org.uk with Catherine Allen southlondon@reach.org.uk

South Wales: Branch Co-ordinator: Melissa Beesley southwales@reach.org.uk

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South West Branch Co-ordinator: Jenna Roper southwest@reach.org.uk Wessex Branch Co-ordinator: Craig Luke wessex@reach.org.uk West Midlands Branch Co-ordinator: Tracey Smith midlands@reach.org.uk Yorkshire Branch Co-ordinator: Alexis & Richard Tibble yorkshire@reach.org.uk

THE LINK TO YOUR LOCAL COMMUNITY

HO will give you lots of support in this crucial Reach role. We can help with marketing and promotional material and all the items you need for fundraising events. Call us on 0845 130 6225 or by mobile: 020 3478 0100.

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WELCOME TO OUR SPRING ISSUE AND TO OUR NEW CHAIR, CLARE SALTERS "My twitter biog would tell you that I am 'passionate about Northern Ireland, the Good Friday Agreement, equality/rights, music, peace, truth, justice, inclusion, badgers, knitting, gin'. That probably does sum me up pretty well but I’ll put a few bits of flesh on the bones for you here. "I live in London with my husband (Malcolm) and son (Jamie, aged 16). but I grew up in Fife and have spent the majority of my career to date working between Belfast and London as a civil servant helping to support the Northern Ireland peace process. Since early last year, I’ve been pursuing a portfolio career, doing an eclectic range of things, including interviewing prospective judges for the Judicial Appointments Commission, teaching clarinet, saxophone and recorder to children, and doing some work with a number of charities. "I became a member of Reach because one of my music pupils, Maria, was born missing most of her left hand, and I wanted to find a solution to help her learn an instrument. The Reach recorder hire programme came to our assistance and has enabled her musical development to go from strength to strength. Around that time, Reach were recruiting new trustees and, given my interest in charity governance, equality, rights and inclusion, I thought I’d give it a go. Thank you for accepting me into the Reach family. "I have learnt a lot since joining Reach, in particular about how embedded its values are across all that the charity does. I’ve learnt that two hands are definitely over-rated. More specifically, I’ve learnt that two-handed assumptions can be more of a barrier to limb-different people than the absence of a limb. In fact, the question I had been asking in relation to Maria’s music ('so, she’s only got one hand, she can’t do X, what could she do instead?') was the wrong one. I should have been saying 'she has only got one hand, so what does she need in order to do X?'. Thank you to those of you who have improved my thinking. Reach is positive - and because of that so many Reach children are truly inspiring.

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"I’ve learnt how lonely it can be feeling that you are the only one - with a limb difference, or with a limb-different baby; why it is so important for new parents to learn about the Reach community as soon as possible after they get the news about their baby’s difference; and why it’s so vital for midwives and other health care professionals to know how to put parents in touch with Reach. I’m keen that we should prioritise raising awareness within the healthcare sector as a means of reaching those who need us, showing that Reach is supportive right from the start.

I’ve learnt that two-handed assumptions can be more of a barrier to limb-different people than the absence of a limb. The question I had been asking in relation to Maria’s music -“so, she’s only got one hand, she can’t do X, what could she do instead?”- was the wrong one. I should have been saying “she has only got one hand, so what does she need in order to do X?”

"I’ve learnt how valuable the Reach family is at boosting the self-esteem of limbdifferent children, and how important it is for them to be around people who accept their difference as perfectly normal, and away from the staring of strangers. Nothing brought this home to me more than the wee lad who turned up at the door of the hotel where the Annual Family Weekend was happening and said that at last he could take his coat off and just be himself. Reach really is community. "I can see how valuable the Reach get togethers are for children and want to see how we can make it possible for more families to participate every year. Thank you to everyone who filled in the survey on how we make the family weekend more inclusive. That’s another priority for the year ahead. "I’d like to say that becoming chair of the Reach board of trustees was part of a great master plan, but my passion for truth (see above) makes this impossible. It is, however, a great privilege and one that I am genuinely excited about. I am very much looking forward to serving as chair of the board of trustees and to meeting even more of the Reach family over the course of the next year." Clare Salters

Reach Board Chair: Clare Salters email: clares@reach.org.uk

Julie Detheridge email: julied@reach.org.uk

Ruth Lester OBE email: ruthl@reach.org.uk

Vice-chair: Lee Gwilliam email: leeg@reach.org.uk

Chris Fuoco email: chrisf@reach.org.uk

Alice Gair email: aliceg@reach.org.uk

Jo Dixon email: jod@reach.org.uk

Lisa Kelly email: lisak@reach.org.uk


CHAIR’S REPORT It’s a really great honour to find myself sitting in the Reach Chair’s chair. This is such an exciting, positive organisation to be part of, and I feel genuinely privileged to have the opportunity to help lead it in the next phase of its life. Of course, I have quite big footsteps to fill. Lee Gwilliam has been a fantastic chair for the last three years and I know you will join me in thanking him for all he has done for Reach. I am delighted that he is still on the board of trustees, and am enjoying working closely with him in his new role as Vicechair. At the risk of turning this into an Oscar acceptance speech, the other person I want to pay tribute to is Gary Phillips, who stood down as a Trustee earlier this year. Gary has made an enormous contribution to the charity over the past 19 years (see page 7). Happily, he hasn’t gone far - he’ll still be actively involved in Reach, just taking a break from serving on the Board. I’m really grateful to him for agreeing to continue as my mentor, and for continuing to do things like providing technical support to the Head Office team, including as we upgrade our database to a more efficient and effective model.

NATIONAL COORDINATOR Time has flown by. I have been with Reach for 10 months and am beginning to get to know many of our members personally, over the phone and via email. I hope to meet you all one day, but in the meantime please feel free to contact me if you need to talk at deborahb@reach.org.uk. The last few months have been a time of great development for Reach and we have increased our membership by 55 families in the last year. This has been achieved through our work with health professionals, academics and current members, and a profile-raising awareness campaign in social media. At the Trustees' strategy meeting in December we focused on establishing the board’s priorities for the charity over the next five years: 1- Raise the profile of Reach so that every parent has access to support when they need it. A key part of this is increasing the public and health professionals' knowledge of Reach so that they can refer parents to us as early as possible. We have been attending the Midwifery conferences and have made some great contacts to share information with. 2- Evolve our use of digital technologies to improve communication with members and streamline our office processes to give us more time to concentrate on our members. 3- Activities and events: we want to develop our family weekends and branch events to increase opportunities for

As Debs has said, we had a really useful strategy session in December and identified some priorities for the charity over the next five years. We have tried to summarise it in the ‘Strategy on a Page’ - see page 17. There are a lot of exciting challenges in there but, for me, the most important one is being able to raise the profile of Reach, so that every parent has access to support whenever they need it. The sooner people are able to tap into the positivity that exists within this community, the sooner all future Reach kids across the UK and Ireland will start living life without limits. One of the things we all thought when we were working on the strategy was whether the time had come to update the wording of our charitable purposes, as set out in the Articles of Association: the relief of children with upper limb deficiencies. They seem a bit negative - indeed a bit Dickensian in this day and age. Changing these words, which are an essential part of our existence as a charity, is not something we can do overnight. It will require the prior consent of the Charity Commission, and a vote at the AGM. But we want to find a way to express the essence of the organisation in more modern, positive terms. Watch this space. Clare Salters Reach families to meet, and to create a fundraising strategy to replenish our funds. 4- Corporate Governance: we need to review our internal operating systems to make sure we are working within the law in all the jurisdictions we operate in and complying with the requirements of the charity regulators and Companies House. 5- Harness our members voices, to enable us to tell your stories and hear what you think of Reach. We will be working with a researcher over the next few months and will be in touch to get your thoughts. We are hoping that the outcome will enable us to create information that is relevant to health professionals so that they know we are here and what we offer. One aspect of our work under the second of these aims is to develop a social media strategy for the charity. Social media is a powerful tool for raising the profile of Reach, and helping us to reach more families of children with upper limb differences. We want to strike the right balance between achieving this goal and also taking sensible precautions to avoid making our members the focus of unwanted attention from online devotees. We are close to having a near-final draft of our social media strategy which we want to consult Branch Coordinators on before we finalise it. One of the things we would like to be able to do more of under the fifth aim is to tell Reach’s story to show how amazing our Reach children/young adults are. We have started a case studies page on our website, which we hope to fill with wonderful moments from our members to help inspire others. If you would be happy sharing your story, please get in touch: reach@reach.org.uk. The Annual Family Weekend is being planned and we will be in touch soon so you can give your feedback on the types of family activities you would like. Debs Bond National Coordinator deborahb@reach.org.uk

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THE IMPACT OF CORONAVIRUS It seems that no aspect of life is safe from the impact of covid-19 at the moment. And that includes Reach. The impact of social-distancing and self-isolation will affect our charity both in terms of the impact on fund-raising and, especially, in making it impossible to organise meet-ups in the near future. Social media seems full of people saying that we just have to put up with this for the greater good, and that’s true, but we also know how important meet-ups are for Reach families. For the parents, they provide an opportunity to connect and share experiences with others. And, even more importantly, for the children they provide contact with other children who have similar differences to them - the power of ‘look, she’s got the same hand as me’ or ‘I’m at Reach - I can take my jacket off and relax’ is really valuable. So what can we do about it? In terms of fundraising, which is crucial for the organisation’s survival, the board will be looking at different ways of raising funds for the charity in the absence of things like the London marathon etc. If you have ideas, please do feed them in (reach@reach.org.uk). These are difficult times, and lots of us will be feeling the pinch, whether this is because our income has dried up overnight or because we are facing additional costs because of the restrictions on working and travelling and getting to school. But if there are ways of helping us to sustain the charity’s income, we need to look for them.

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REACH EVENTS POSTPONED TILL FURTHER NOTICE All events that have been organised for Reach members over the coming weeks are being postponed. This is to ensure our Reach community is kept safe. This will affect some of the 'family weekends and Tyncae camp, and we will be in touch with organisers to see if we can postpone them till later dates. We will keep you updated. The Davies family sent this message for the Tyncae campers "Please add a big sorry to all our campers old and new! Hope to see everybody in 2021. At least it will give me extra time to get over my knee replacement! Best wishes to all, Rob, Dawn and all the Reach Tyncae Camping Crew"

BUT WE NEED YOU NOW MORE THAN EVER! We would love it if you could get involved in raising the profile of Reach. Please don’t be shy! We are not looking for the next Kate Winslett or Brad Pitt! We want real people who care about Reach and want to tell people about who we are and why you are part of our wonderful Charity. Phones are a brilliant tool for doing this. You can film yourself or if someone is willing to film you, even better! We can give you a series of questions to help you plan what you want to say. But if you prefer to just talk freely that is totally fine as well. Remember the video needs to be short, to keep the viewer engaged and if you prefer to have a conversation with your best friend on camera rather than straight at the camera that is absolutely fine too.

Thinking caps on please. Every little helps. As for finding a substitute for the meet-ups, that’s even harder. But please make use of our closed Facebook group to maintain contact across the Reach community. Use it to seek advice, share worries, share successes and in particular share photos and videos of your wonderful Reach children living life without limits. Older Reach kids, this is definitely where we need your help. I was looking at some old videos of how to do the cup song with limb differences and wondered whether we could do some updated videos for the covid-19 era. How about some videos showing how to wash your hands properly? None of the official ones have anything useful about making sure you’ve got in between the wee nubbins really really properly, or how to use your little arm to wash your other hand - that’s definitely a gap in the market. And are we all singing Happy Birthday twice or do you have another song or a poem that you use? Anyone using Reach For The Stars? How many great songs are there to wash our hands to? Most importantly, stay safe. Particularly those Reach members who are also working on the front line in the health services or otherwise helping to keep our countries running. Look forward to seeing you on the other side.

Clare Salters On behalf of the Board of Trustees and Head Office

MANCHESTER METRO UNIVERSITY RESEARCH

INFANT PROSTHETICS What are your experiences? Are you an adult family member, or guardian of a child aged 0-5 years who has an upper limb difference and uses, or has previously used a prosthetic arm? We would love to hear from you! We would like to invite you to take part in research to assist in the development of 3D printed prosthetics for infants. My name is Elen Parry and I am studying my PhD at Manchester Metropolitan University. My research is around using low-cost 3D printing techniques to create bespoke custom medical devices. What is involved? If you are interested, you will be invited to complete a questionnaire. You will also be given the option to attend a focus group at Manchester Metropolitan University (with reimbursed travel costs). Are there any benefits? Your views will be taken into account in order to potentially develop new prosthetics for future clinical use, i.e. helping to advance this field of research. lnterested? Please contact Elen on: 14016444@stu.mmu.ac.uk


THANK YOU, GARY Gary Phillips has been with Reach just over 19 years. He has been Chairman and Vice Chair twice and a trustee for nearly 16 years, during which time he has helped to lead the charity through the sad and difficult passing of its original National Co-ordinator, Sue Stokes, and the challenging transition to incorporated status. Gary has made, and continues to make, a huge contribution to the success and development of Reach. His specialist skills lie in IT and he is currently helping with the purchase of a new membership system. Gary intended to step down last October, but we persuaded him to stay and help with the transition of a new chair, new board trustees and to continue the support and mentoring he had been giving Debs. Because of his unstinting, loyal nature Gary agreed to stay on for a short time until he felt he could step away from the operational duties of being a trustee. Gary is continuing as chair mentor, and will provide advice to the office and still be an active member of the charity. Gary has said he intends to join us all in Manchester for our Family Weekend, so he isn’t going too far away. You may recognise the confident young man in the white hoody - Matthew Phillips is after all a world champion and a fantastic role model for young Reach members. A classic Reach success story. Dad Gary and his wife found out about Matthew's little arm at their 20 week scan and after an anxious hour and a half, with Gary pacing the hospital grounds, they met their paediatrician. She turned out to have a special interest in upper limb difference and signposted them immediately to Reach. A chance encounter between Gary's parents and a family with a Reach child in Dorset added weight and they joined the charity as soon as Matthew was born. It was a very different organisation in those days. There was no social media and support was provided through phone calls and emails to Sue Stokes the founder, and branch meet ups. "We were part of Wessex branch," said Gary, "It was quite active with three or four events a year. When Matthew was a young child he benefitted quite a bit from Reach, especially the local events where he mixed with other children like him and made good friends. "I got involved as a trustee in 2003 after Frank Letch made a sales pitch to members about the need for people to step forward and become trustees. With my St John Ambulance and school governor background I found it difficult to say no. I thought I would answer the call. "I was vice-chair when Sue Stokes, the National Co-ordinator died, and Siân Brooks, Julie Detheridge and I ran the charity for about six months. Sue had joined Reach after the birth of her daughter Natalie and became a branch co-ordinator before becoming a full-time National Co- ordinator. She held this role for many years and, in effect, was Reach. She had so much knowledge stored in her head. "For our members she was the font of all knowledge. She unfortunately passed away after a short illness whilst still National Co-ordinator. She is remembered through the Sue Stokes Award which is presented annually in her memory. "It was a difficult time when Sue died as we lost an awful lot of knowledge. We had to redo all our governance and policies and bring the charity into the 21st century, with a focus on governance rather than operations. I also recruited Phil Robertson as treasurer and he revolutionised our financial system so that now we can account for every penny spent. We are lucky that

he continues to be our financial adviser as he is a very valuable asset and he turned our finances around. I was also involved in the change from unincorporated charity to charitable company limited by guarantee which was a significant change for Reach. I became chairman for the second time in 2014. "I stayed on as trustee to help Debs ease into her new role and I am still around to help with IT and advice. Debs can ring me up and tap me for my past knowledge of Reach as I have been involved with Reach for 19 years."

EXCITING NEWS for children with below-elbow limb differences! The Open Bionics Foundation has received a large donation from a generous donor wishing to fund Hero Arms for children. The Hero Arm by Open Bionics is the world's first multi-grip bionic arm for children, with advanced tech and empowering designs. This is an incredible opportunity for children from low-income families to receive life-changing technology. Submit your details to receive your funding application pack, or please share and tag a friend who could benefit. Sign-up here: http://bit. ly/34biKSg. The Open Bionics Foundation is also now a registered charity in England and Wales (Charity Number: 1186502). Parents can sign-up on our website, and we'll send out more information.

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BEING ME BECAUSE, NOT DESPITE When asked what he would need help with, in his interview for a place on Masterchef, Miles Harrison had to think hard. What might he find difficult? It was a tricky one. In the end he thought possibly lifting really heavy pans out of a very hot oven might require assistance... but probably not.

What my parents did supremely well was to understand that to love someone you must let them go. They were not overprotective. They were the most loving parents but they let me go and do things and sort them.

Affected by the Thalidomide drug, Miles has no arms. His hands are at shoulder level but he is a powerhouse of ability. Interviewed for withinReach he reacted with faint amusement that help might be required for daily living. What about dressing, toileting, shaving, cooking even….Nope. No help needed. A carer, a one-to-one? Nope, never had one. Miles is married to Rosie and has three children. He has a career in leadership training and development and governance in the non profit sector and in his spare time climbs mountains – big ones.

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“As a child I just coped,” he said. “I have never seen an occupational therapist on a professional basis in my life. I do most things not using my feet. I just find a way. "When I was asked to speak to Lloyds Banking Group for the International Day of People with Disabilities, I wanted to leave them with the idea that employing people with disabilities is a really good thing to do as they are very good at problem solving and adapting and thinking ahead. “My key thing is to do with leadership and governance, training and developing boards of directors of charities and I do a lot in the cultural and heritage field. “In daily life there are ways and means of doing things. When I climb mountains like Mera Peak, a 6,476m high mountain in the Himalayas, part of it is bravado, throwing yourself into things and finding ways of doing them. You find a way. I didn’t need to, but at any particular point I knew I could rely on anyone in the group. “I rebelled when my parents first sent me to a school for children with particular needs so then I went to a mainstream school and never had any problem with bullying. I have had no problems with social media either. I strived to be normal at school and probably suppressed a lot of stuff but I don’t have bad memories. My anxieties about getting a girlfriend were no more than other people had. “Looking back at my life I wouldn’t actually change a thing. My physical condition has formed me as the person that I am. I have a terrific life. I enjoy my work, I live in a fabulous part of

Employing people with disabilities is a really good thing to do as they are very good at problem solving and adapting and thinking ahead. the world in Stirling, I have a fabulous wife and family. I’m still climbing mountains, I have skied for 20 years, I played football at school and drums in a band. Of course I fell off bikes but actually no more than other kids. And I am who I am because of my condition, NOT despite it.” For the record, Miles did not end up on Masterchef. His decision. He told them rashly that he was not seeking a new career running a restaurant!

Looking back at my life I wouldn’t actually change a thing. My physical condition has formed me as the person that I am. I have a terrific life.


“A disabled person who fights back is not disabled... but inspired� Douglas Bader

Helping you on your way For those affected by limb loss or are otherwise physically disabled

douglasbaderfoundation.com Registered Charity Number 800435

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BURSARIES HELP THINGS HAPPEN! IF AMBITIONS ARE THWARTED BY COST - APPLY FOR A REACH BURSARY Outstanding young Reach athlete Rhian Hughes puts in a phenomenal amount of work to succeed in her chosen sport of gymnastics. That level of dedication, commitment and hours of training really impressed our Bursary panel. They awarded her the full amount requested - £2000 - to help with her gymnastics travel, accommodation and kit as she moves up the competition ladder. For example, February 23rd was typical busy day. A Trampoline competition in the morning, winning a bronze medal and then giving a beautiful performance with the National Disabilities Display Team at Gymfusion Manchester in the afternoon. Go Rhian!

Tom Cowlin, aged 17, was keen on learning to drive. "I have a shortened left arm with two fused fingers," he said. "In August last year, three months before my birthday, I went to our local Mobility Centre for a driving assessment where they advised on the type of car I would need and the adaptation I would require driving it.

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"The car had to be automatic with a steering ball fitted to the steering wheel. Since we were unable to find any local driving instructors with this type of adaptation in their car the only option left was to purchase my own car and have it adapted. We were lucky to find a local company that adapts vehicles and chose a 10 way Veigel blue tooth control device. "The steering device is equipped with secondary controls such as indicators, front windscreen wipers, screen wash, headlights and horn. Having this equipment fitted costs around £1,500, so I applied to Reach for a bursary for part of the cost. The application form was straightforward and I had a reply back very quickly saying I had been awarded the money. "A very big thank you to Reach for their help with this. After a few teething problems with the fitting of the device, I am now the proud owner of a second hand automatic VW Polo and have started my driving lessons – so hopefully not long before I pass my test!" GB Parasprinter Simran Kaur has been awarded a bursary of £1,206.40, which amounted to two thirds of her application, to help with car adaptations so that she can be independent and not rely on her parents to drive her everywhere. "I train at various places, some quite far from my home, multiple times a week" she said, "Being able to drive myself to and from these places will reduce the stress on my parents and will be more efficient for me as I won't have to wait around for my parents. "As I am balancing all my training with A levels, getting to and from training quickly will be crucial in the run up to them. As well as training I also have equipment I need for training such as starting blocks. With a car it will be easier for me to transport all my equipment.

"In summer I travel all over the country to compete at various events meaning my parents have to drive me everywhere. With a car I can drive I can go by myself and not affect them. "And I am planning to go to university in a couple of years meaning I will be moving away from my family and living independently. Having the adapted car would allow me to be able to get around, do shopping and go to and from university to home without having to rely on anybody. "Thank you very much for the bursary money. It is very much appreciated and It will help me massively! Again, thank you very much for the support!"!


SO WHO DECIDES THE BURSARIES? OUR BURSARY PANEL: HERE THEY ARE. IT'S AN IMPRESSIVE LINE-UP! Bill Basford: "I became involved with Reach in 1979 when our daughter Alice was born with her right forearm missing below the elbow. Reach was very new then and I became Chairman/organiser of the Chesterfield Branch. A year later I started to attend National committee meetings and became more heavily involved. I was National Chairman for some three years. Reach had started as a pressure group in '78/79 but whilst I was Chair we shaped it into more of a supportive resource of self-help as well as promoting research both in prosthetics and causal. "As Alice got older we learnt that she was very capable. She represented England in the 1996 Paralympics in Atlanta gaining a bronze medal in the Long Jump T42 group. Eventually she set athletics aside and graduated from Cardiff as a Pharmacist. She is currently a full time mum of three (10, 8 and 5) living in Peterhead. She made her own decision recently to join a Scottish Limb service trial (a lot of long distance travelling in Scotland) with a Bebionic arm and is doing things now which she had never attempted in the past. "I joined the Bursary Panel with Dave at its inception as someone with both Reach functional, research and parental experience. We manage to support sports activities, all sorts of practical equipment, one handed musical instruments etc, computer gadgets and driving adaptions, the latter now seemingly the lead request. I hope that I have always been able to offer balanced views of need, provision and support." Carla Baldrighi: "I am an Italian born Hand and Microsurgeon who moved to UK 18 months ago to work at Birmingham Children’s Hospital. I developed a keen interest in hand surgery and Limb reconstructive microsurgery with special passion for the care of upper limb congenital differences and paediatric pathology, many years ago during my Orthopaedic Residency training in Verona (Italy). "My subsequent international training and more than 15 years work experience as Consultant, mainly at Meyer’s Children’s Hospital in Florence and only recently at Birmingham children’s Hospital, highlight my commitment in gaining and developing a comprehensive knowledge in these fields. My hybrid surgical background in Orthopaedic, Hand and Plastic Surgery has led me to have a broader perspective on paediatric upper and lower limb congenital, post-traumatic and oncologic conditions. "I truly believe that the treatment of congenital upper limb differences requires not only great insight and knowledge but also uncommon qualities to deal with a problem that goes beyond a surgical challenge and involves a growing human being and their entire families. Indeed, I have always felt that my job extend far beyond the mere demonstration of acquired surgical skills. It brings with it experiences that are holistic, culturally enlightening and personally enriching. "I am deeply appreciative for the opportunity to be part of Reach and to contribute towards improving the lives of “my children” (that is how I call my Patients) this time in completely different way." Charlotte Fielder: Charlotte worked for 33 years in HMCE, National Criminal Intelligence Service and Home Office; as a Customs Officer, on the Serious Sex Offenders Unit and in Border Force. She represented the UK at international child protection conferences, and she was the Home Office Diversity Champion during the London Paralympics.

In 2012, she was appointed to the board of EDRIC (The European Dysmelia Reference Information Centre) an umbrella organization which brings together limb difference groups and those affected by congenital limb loss. Charlotte was born with a shortened forearm and a missing hand and considers herself informed by her disability rather than defined by it. After two years as a director, she stood down and was invited back as EDRIC patron. She is the author of Shared Experiences written for families affected by upper limb difference with proceeds going to UK based charity Reach. She has been a volunteer fundraiser for Reach for 14 years and has organised many fundraising events raising many thousands of pounds. Whilst in government departments Charlotte sat on HOD (Home Office Disability) group and was also a founder member of the Portcullis Foundation a grant and bursary awarding board that raised money through GAYE (Give As You Earn) scheme where the foundation was able to claim the tax on donations to give more to worthy causes. Unfortunately the Portcullis Foundation closed when HMCE merged with Inland Revenue but Charlotte has remained convinced of the power bursaries and grants have in transforming lives. Charlotte is passionate about improving life for those affected by limb difference, volunteerism, diversity, fundraising and rescue dogs! She is married, has a 23 year old daughter and interests include creative writing, Pilates and animal welfare. Suzanne Hackney: "I’m a Reach adult who has been a member for over 30 years. I’m a mum of three children aged 7,10 and 12. Currently, I’m a supply teacher which fits around family life but I also teach piano on evenings. "I don’t use a prosthetic limb but have looked into it recently with pain in my right hand but have found what is on offer is not suitable for my lifestyle and job. I rely on gadgets around the house when required. "I have a manual driving licence, although I now drive an automatic with no adaptations. I play 1st Tenor Horn In Ellington Brass Band, which competes in competitions and regular concerts, and teach brass in the junior band. I am a keen skier and love the outdoors being spoilt with Northumberland and the coastline." Fiona Carnegie: "I worked as an Occupational Therapist in Roehampton, SW London in the prosthetic team for 30 years, leaving in 2016 as the time seemed right! I have been a member of Reach most of that time and have remained interested in the charity and all that it means. I have been on the Bursary panel for several years. "So I have a broad knowledge of limb difference, especially those for whom a prosthesis might be useful (but I know that many of you do not wear one!) but we also saw some children who had longitudinal difference ie had some fingers but short arm(s). And I worked with children and adults with one or more limbs absent. "Outside work I have some knowledge of musical instruments; I play the flute a bit! I have minimal knowledge sport or similar! I drive and ride a bike so have some idea of what that entails. I love gardening! I live in South London and go to the South London Reach meetings when I can. I go to the AGM when I have friends in the area that I can visit at the same time!"

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UP, UP, AND AWAY THE DOUGLAS BADER FOUNDATION

www.douglasbaderfoundation.com/overthewall

The Douglas Bader Foundation exists to advance and promote the physical, mental and spiritual welfare of persons who are born without or have lost one or more limbs, or are otherwise physically disabled. We have recently extended our remit to include support in relevant circumstances to adults and children who suffer from a diagnosed mental health issue. Bader Braves offers children experiences that encourage teamwork and participation and help to instil a sense of self-confidence.

YOUNG AVIATORS DAYS 2020 To apply go to www.douglasbaderfoundation. com/baderbraves Sat 13th June Cornwall Flying Club/Feet Off the Ground, Bodmin Airfield, Bodmin PL30 4BU Sun 21st June West London Aero Club, White Waltham Aerodrome, Maidenhead SL6 3NJ Sat 27th June Sandown IoW Airport, Scotchells Brook Lane, Sandown PO36 0JP Sat 4th July Ulster Flying Club 61 Portaferry Road, Newtownards BT23 8S Sat 25th July City Airport & Heliport, Liverpool Road, Eccles, Manchester M30 7SA Sat 5th Sept Fowlmere Aerodrome, Fowlmere, Royston SG8 7SH

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Sat 12th Sept Sherburn Aero Club, The Aerodrome, New Lennerton Lane, Sherburn in Elmet, Leeds LS25 6JE Sat 19th Sept Pembrokeshire Flying Club, Haverfordwest Airport, Fishguard Road, Haverfordwest SA62 4BW

SUE STOKES AWARD 2020 We are seeking nominations for a Reach child or young adult (aged up to 25) whom you feel deserves to be recognised for their achievement during 2019, in memory of former national co-ordinator Sue Stokes who passed away in 2012. Sue gained great satisfaction from seeing and celebrating the achievements of our inspiring Reach children. However small you feel this achievement might be, we want to hear about it. The activity could be in the field of sport, the arts, science, technology, in or out of school, it might even be a boost in confidence or completing a personal challenge. PLEASE DON’T HIDE YOUR CHILD’S LIGHT UNDER A BUSHELL! The deadline for 2020 nominations is August 13.

small prize and will be featured in Within Reach and on the website. Although we can only award one prize we do like to feature nominees in our publications so please send in photos to help us celebrate our fabulous members so they can inspire others. Our 2018 winner was Leah Hardcastle who had really struggled in school, endured several operations and had low attendance. Through the support of her family and Reach, Leah managed to turn things around, worked really hard, and celebrated successful GCSE results. She became an ambassador at her college and even took on some tutoring! Our 2017 winner was Harry Arnold-Pepper who was a fantastic ambassador for Reach throughout the year not only presenting at Heart Radio but also at one of his school assemblies.

It doesn’t even have to be your child, it could be a story you have read about another Reach child and feel they deserve recognition.

Our 2016 winner was Hollie Arnold, Gold Medal winning Paralympian, and in 2015 we elebrated paraclimbing with Matthew Phillips and his remarkable achievements.

Our panel will announce the winner at the 2020 Family Weekend in Manchester in October.

2019 saw some amazing achievements from our Reach children on Facebook and other social media sites so don’t be constrained, tell us about them, let's celebrate and share their success!

The winner will be presented with an engraved trophy, a


GOLD, SILVER, PLATINUM... Explorer Scout Kayden Jefferies from Spelthorne is on his way to winning the highest scouting honour, the Queen's Scout Award. He just has to wait until he is 16! Then he can go for his Gold Duke of Edinburgh Award followed by the Queen's Scout Award which is the highest youth award achievable in the Scouting movement in the Commonwealth realms of the United Kingdom, Canada, Australia, and New Zealand, where Scouts operate under the patronage of Queen Elizabeth II. In March, Kayden added his Diamond and Platinum Chief Scouts Award to the Gold Award he already had. To achieve these he participated in numerous camps and attended the World Scout Jamboree in West Virginia USA last summer. He is also a young leader at his scout troop, helping the younger scouts with all the fun activities they get up to. What an amazing Reach role model!

NO STOPPING THIS TEENAGER!

Rhys loves drama and cooking.

Rhys Bevan-Davies is now 13 and hitting teenage life in great spirits, says mum Sian.

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"He’s in year 8 in a mainstream comprehensive school with a brilliant one to one supporter who pushes him to do well. He’s settled into the comprehensive school well and made lots of new friends, holding his own. "His school is a new build and it is perfect for him. They have lower tables in class and this enables him to participate in class with all his friends. Rhys does as much as he can for himself and then his one to one helps. She’s very good at getting the best out of Rhys without him realising. Last year he went to France with the school and was able to do most of the activities and had a fabulous time. "Out of school Rhys loves playing on his Xbox. He has his own way of using the controllers. He plays indoor bowls with a ramp they’ve made for him and he enjoys going to walking rugby with his dad. Now he’s a little older, he enjoys going into town to hang with his friends. He uses a wheelchair for this and his friends are great at helping him when it's needed. "Rhys is your average teenager who loves going out with his friends and he is big fan of technology. We’re about to start working towards getting Rhys his first arm to help him with everyday activities. Now is the right time for him as he’s never really asked before."

PARTNERSHIP WITH NAIDEX Reach and OHMI have partnered with Naidex, at the National Exhibition Centre in Birmingham. Naidex is Europe's most comprehensive trade, professional and consumer event dedicated to the independent living sector. Sadlly this year's event fell victim to the pandemic but there is always next year!

VIRTUAL BAKE-OFF Josephine Howarth organised a virtual bake-off and raised £75 for Reach. "At work we are celebrating our team's second birthday and have done a virtual bake off with fundraising," she said. "I'm really pleased that the team chose my nomination of Reach as the charity."


WELCOME TO THE FAMILY WORDS OF WISDOM When the mother of a two year old Reach child poured out her distress at children's reaction to her little arm, she was greeted with a wealth of wisdom from parents and Reach members who had had to deal with the same issues. Here is a digest of their pearls to reassure our new parents that their children will be fine. Yes, they'll be fine!

Finn Jones

The support we have received since the 20 week scan has been fantastic and we couldn’t be more proud and excited for our wee boy’s future

Abigail Hanger

"At that age it's more upsetting for us parents than our children. It used to happen to my daughter a lot whilst younger, to the point that kids in her class used to avoid being her partner or they would stand on the other side to avoid her special hand but I assure you things do get easier, she's 12 now and nothing gets to her."

Aditya Selman

14 Thank you REACH for all your support during 2019, looking forward to what the future holds for our little man

Will Riddell

Roman Purdie and India Craig

"It won’t be this way always - children that age are so inquisitive and have no awareness of their actions affecting emotions of others. As your child becomes more aware, she’ll also become more able to talk to children herself, so having a few stock-phrases ‘It grew like that in mummy’s tummy...’ etc, will help. You did the right thing, explaining to the child, and allowing her to just get on with her play oblivious. Our children are often stronger than we think, but hearing you explain in a simple and friendly way will definitely set her up to feel confident to do the same when she is old enough.

"At the age of 10 my daughter noticed an old lady and her friend staring at her hand so she embarrassed them by saying if you really want to know what happened to my hand, well my mum didn't feed me for 24 hours so I ate my fingers instead. It didn't taste so nice so I kept the other hand for a rainy day! I was so shocked I didn't know whether to cry or laugh." "Never dread any of these things that you are going to have to deal with. When it happens embrace it whether it’s good or bad and resolve to be able to deal with it, then you will both be able to grow in a way of managing it."

Alice O'Connell

Thank you for your warm welcome. This group is amazing and has really helped us see that nothing is impossible for our children. This is Theo our 7 month old little boy. He was born with Tar syndrome and he amazes us every day. This charity has really helped us through our journey so far.

"As a grown up Reach child, I can say that there were days when incidents like this did bother and annoy me (mostly when I was tired and grumpy!) but generally it doesn't bother me at all. I will respond with the usual 'I was born this way' response and that is enough to satisfy their curiosity! I now work as a teacher and every child I have taught has learnt to accept it. Children (although they can be blunt at times!) can be very accepting too. As a teenager, I found it helpful to have a Reach friend that I could share stories and let off steam with." "As a Reach adult I’ve had plenty of practice handling curiosity and other people’s reactions. The vast majority come from young children who are curious and don’t have any malice at all. In all situations, showing confidence and being very matter of fact has served me incredibly well. "The best thing you can do for your daughter is to help her build confidence and self esteem, even as young as she is now. Tell her she is amazing, clever and can do and be anything she wants to - it’s true! And when tough times come, as they do for all children Reach or otherwise, empathise but don’t sympathise. "If she is confident she will be able to answer questions without being embarrassed or negative - her hand is simply part of her, and she should be proud of herself. If she encounters negativity or ignorance she can call it out. Please don’t worry, focus on role modelling confidence for her instead! I know that my little hand has helped me be strong, resourceful and confident - being a bit different is an advantage for me. I’m sure it will be for her, too."


THANK YOU ALL ! Mark Weaver gave a presentation to Redditch Photographic Society on his tour of Iceland. Thanking members for their donation of £70, he told them: "This is now an important organisation in our lives following the birth of Jack and I know every penny donated will be put to good use supporting children with upper limb differences and their families." Rupinder Kaur, mother of Reach member Sahib, runs an organisation called Asian Women MEAN Business."We like to have a charity we can support," she said, "And It gives me great pleasure to have Reach as our charity for 2020." Rupinder hosted a 90 minute online masterclass on Transforming Fear Into Faith with the theme: "Overcoming fear is an essential step in achieving our goals and dreams!" She raised £1,000. "We became aware of Reach when our son Sahib was born with three fingers missing," she said. "The shock of this discovery a few hours after a traumatic labour was heartbreaking. The consultant gave us the details of Reach and through them I have found support, hope and inspiration – seeing other children in action has helped me overcome some of my fears about what the future holds for my little man."

members of Reach "and we've enjoyed flipping through WithinReach. The motorcycling article was cool!" Liz Wilmshurst's father in law Robin Wilmshurst's Masonic Lodge donated £500. The Richard Kirkman Trust in Hampshire donated £500 to be used for the benefit of the local branch. Jane Crook, from the North West Branch wrote to UK Healthcare to request a donation toReach towards the costs for branch meet ups and the heavily subsidised family weekend She was successful! UK Healthcare sent a cheque for £7,000! . Warburtons are donating £250 from a similar request. What fantastic fundraising! Lilah Philpott in North West Branch and her friends raised £150 from a cake sale at her school.

The estates and facilities department at Birmingham City University raised £100 through dress down Fridays, Kitty Wilmshurst's auntie works there and nominated Reach. Reach supporter Barbara Collis donated £40 in lieu of sending Christmas cards to her friends at church. Sharon Fox raised £54 in lieu of Christmas card at Morton Bridge Club in Lancashire. The 2nd Gamlingay Guides in Bedfordshire held their annual charity auction and raised £163.80 for Reach. Assistant Guide Guider Irene Gray said each year they gathered items for sale and invited friends, family and neighbours to come amd bid. The Guides acted as auctioneers, porters and runners. Tracey Smith in West Midlands branch has negotiated to benefit from the Co-op's charity fundraising. So any Co-op shoppers please help! Hope you can help! "This is not only available to people shopping in our area. I’ve since learned that you can also select a “non local cause” by using the link below. So, if you are already a Co-op member, you can opt to support Reach West Midlands even if you are not local. https://membership.coop.co.uk/causes/42129 "Thanks to the kind people who have chosen us, there is already £226.84 in the pot for us to use towards our meet ups!" The Moone School of Ballet in London donated £200. Reach Facebook member Mike Matthews made a card holder using his 3D printer and offered to make them for members. Wendy Knott donated £10 in lieu of payment. Lauren Detheridge's dance school had a Christmas Showcase and raised £100 with a raffle in aid of Reach as a thank you for the help that Julie gives to Jill the dance teacher. Donations in memory of Marla's granddad Gary Trigwell totalled £299. Vicky Prendergast collected £250 for Reach. She is now goig through the stamps that have been collected, which will raise even more! Peter Lomas donated £30 as his girlfriend and her family are

They voted on which charity to support and two Guides put up a strong case for Reach as they knew a Reach member. The amount raised was the highest they have ever managed at an auction! Alastair Hume's grandparents, the Greenhows, donated £25. A donation of £25 was made in memory of Andrew Lane. Reach dad Paul Probert is part of the Rotary and Lions Clubs team that each Christmas tows Santa in his sleigh round Droitwich Spa. In 2019 they raised £8,000 for charity thanks to the help of young firefighters who help knock on doors and collect money. "I’m one of the drivers," said Paul, "And this year they were struggling to find a place to store the sleigh overnight so I offered my garage, and as a thankyou they gave me £200 for a charity of my choice." A team from Opcare cycled 158 miles from Bradford to Coventry last summer and raised £1,500 for Reach, one of three charities they were supporting.

THANK YOU ALL

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NEED TO KNOW: DLA Reach mum Reena Jefferies is a Welfare Benefits Adviser at Citizens Advice. She helps at every stage of people's inquiries, but specialises in challenging benefit decisions rather than completing applications. WithinReach asked her write down some advice about claiming Disability Living Allowance (DLA). There’s so much say, she said, that this is general advice. "Before applying for the benefit, please check the eligibility criteria, which can be found at www.gov.uk. "To qualify for DLA, it is not enough just to have a health condition, it’s how your health condition impacts your care needs and mobility needs. How do they differ from someone who is the same age as you but with no medical conditions. "It’s important to think about their majority of the week when answering the questions too. It’s also important to think about what they need and not what they already have in place. "You can be awarded either the lower rate, middle rate or higher rate of care and/or lower rate and higher rate of mobility. Children under three are not eligible for the mobility component. "The application form: Firstly, this application form is not user-friendly, it is hard work. If you’re completing this on your own, read the form first and have a brew to hand.

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"When answering the questions, you need to think about if the person claiming DLA (the claimant) needs prompting to do activities, reminding, supervision or any other support. Consider how they feel about doing the activity, for instance, they may be able to do the activity but it may distress them or affect them another way. "It distinguishes between day activities and night activities. If the claimant has different needs during these periods, explain these. "Throughout the form it is helpful to use examples. Example of DLA- Taking medicine and managing therapy: ‘Reacher has a splint that has been customised for their arm. The sight of the splint causes Reacher significant distress, which takes up to one hour to calm them down. Once Reacher has calmed down, the splint is placed but as this causes so much pain and discomfort, Reacher pulls at them with their teeth until it is off. Red marks are on Reacher's wrist because of this, we use special cream to prevent sores. The splint is supposed to be on for x amount of time to be effective and we put them on during the night as they stop Reacher from playing and getting on with daily activities. It means that during the night, appropriate adult has to get up, soothe Reacher (usually up to an hour) and then put the splint back on, which can take 20 minutes. It causes night time to be a distressing and anxious time for Reacher.’ "Consider why you need the DLA - it may be you have extra hospital appointments, meaning extra money is needed for transport and parking or you may have to get clothes professionally altered or modified. If other health conditions are present, do you have extra costs because of them? "Do submit copies of evidence with the form, letters from consultants at the hospital, a statement from OT and physio, prescriptions. A supporting statement from school, key workers or any other help they may have in place. There is a place on the form asking about who is involved in your child's care, list them all down and any medications or therapies that they may use.

"It sounds like a lot. It is. The hope is that they will make a decision on the application alone because they have a lot of evidence that persuades them to find in your favour. "The Assessment: Depending on the claimant’s age, they may invite you to a face to face assessment, do attend if you can. If you are unable to attend a centre due to your health, get a letter from your GP to confirm this and notify DLA ASAP. The assessment starts as soon as you leave the front door of the house, they will want to know all sorts, how did you travel? How long did it take? They may even ask if you have been on holiday, if you have, do mention and special arrangements you may have had at the airport or in the aeroplane. The Decision: Hopefully they will have found in your favour, if they haven’t, please don’t be deterred- challenge it! "You have one month from the date of the decision to ask for a Mandatory Reconsideration. This is the first stage. You should write a letter or use the form by going through the decision, disputing why you think the DWP are wrong in their assessment. "If you had a face to face assessment, you can use this in your Mandatory Reconsideration request. You may wish to also submit any further evidence that you think will help to overturn the decision. "Once the DWP have looked at the decision again, if they still refuse you, they will send out a letter called a Mandatory Reconsideration Notice. You have one month from the date of this Notice to appeal to an Independent Tribunal. To do this, you will need to complete an SSCS1 form which is available online, and send this to HMCTS- Bradford (the address is on the form). Once this has been sent, you will receive notification from HMCTS. Following this, you may wish to submit a statement stating why you should be awarded DLA and the reasons for this along with supporting evidence. If you believe that the DWP have acted against their own guidance, this should be brought up at this stage. "The tribunal is made up of three people including a doctor and a judge. They will have a bundle of document, which should includ your application form, any evidence you have sent and the DWP’s findings. The panel will make a decisionif they award it, super! If not, if there has been an error in law from the panel, you can appeal to the Upper Tribunal. It is always worth requesting a written statement of reasons from the tribunal as this shows how they came to their decision. "Throughout the process you can seek advice and if you’re not sure where from, your local council should be able to say whether they can help or what services are available. There is guidance for DLA on the Citizens Advice website and Carer’s UK also offer information on it, which is user-friendly. "Conclusion: This is an overview of DLA. In my opinion, there is nothing to lose from applying but getting it may passport you to other help e.g. two year olds get 15 hours free from nursery, you can get extra money on child tax credits or universal credit, it is easier to get Early Plan and ECHP in place.If you do get it, it is worth getting a benefit check to see if you can get extra money as a result of an award. "I’m more than happy to help where I can. You can either email me at reena.ramchurn@gmail.com or private message me on Facebook- Reena Jefferies.


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HANDS FOR PARTIAL HANDS Neil Antrobus and his son Jack have pioneered the creation of functional 3D printed hands for people with below the wrist limb difference, opening up new and exciting possibilities for many more of our Reach members. He is willing to share his knowledge to help other families. This is the story of Neil and Jack's high tech odyssey. "It was Christmas 2018, when I asked my son what he would like Santa to bring him. He replied “I would like a hand”. My son is called Jack and he was aged 7 when he first asked. Jack has three absent fingers, and a partial palm on his right hand, plus a fused radius bone at his elbow. He has limited wrist movement, partial use of his index finger and a short thumb. He has a shortened right arm. "My initial reaction was “I don’t think Santa can do that…….. would you like something else?” I also gave him a very vague “we will see” answer, in the hope that this was just a passing comment, and he would return to playing Minecraft and making deadly dinosaurs out of junk materials. I felt helpless and angry that I was unable to help my son.

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"Christmas passed and Santa didn’t bring Jack a hand. Jack was a bit confused and perplexed as to why Santa could provide other children with wooden toys, complicated plastic toys, steel bicycles, miniature gadgets; but couldn’t deliver something simple such as a hand? Everyone has them, so they must be easy to make, surely? Why couldn’t he look like everyone else? This conversation continued over the coming months. I tried to engage with the charity E-nable, but without much success. I researched private prosthetic companies, but the costs were prohibitive to us as a family. Thankfully, the NHS were brilliant, and continued to provide us with some great support and suggestions. "This got me thinking. How could I actually help him? I was given an NHS information pack and read a number of articles about Hero Arms. This sounded both promising yet expensive, but I was committed to helping Jack so I engaged with Open Bionics but they could only provide a prosthesis to fit an arm below elbow and above wrist. Jack didn’t meet these criteria since part of his hand was present below his wrist. He was disappointed and also started to become more self-conscious and aware of his condition. This forced me into action. "Since there was no-one to assist with his specific needs, I decided to tackle this head-on myself. Santa was going to deliver! "I bought a budget 3D printer which I built myself. I figured out how to 3D print components, optimise the machine and use the software to allow me to make high quality parts. This took me about five months, working on it almost every evening after work. Jack and I took this journey together. He pressed all the buttons, chose the filament colours and helped with the assembly too. He loves to design and build things. "His first hand was created using on-line 'open source’ designs. Some of these free blueprints were good but unsuitable for Jack, some were impractical and some simply didn’t work. I had to combine a number of ‘open source’ designs to

make something that would fit and work well for him. Everyone is different and one-size definitely does not fit all! "Our very first hand didn't go very well at all! The scale was not quite right, the parts didn't fit together properly, the overall assembly was poor, the material didn't really work and the functionality was non-existent. But Jack loved it. He took all the individual parts into school after they were printed to give his class a 'show and tell'. He wore the final assembly with pride. It was his hand and he owned it! "I looked into improving it to keep Jack engaged. I 3D modelled a number of parts to match Jack's hand/palm and modified others to improve the fit. The second hand was much better and gave Jack more functionality, the third allowed him to pick up lightweight objects. The final one allowed him to confidently pick up an apple and eat it. This was a very emotional milestone in his journey, since Jack has never been able to do this before! There were lots of happy tears from both of us. "The 'open source' designs are basic and limited. I hoped that we could make an even better hand. He was clear about how he wanted it to look, feel, work, etc. I agreed to fit a torch in his finger and a secret compartment for contraband (so he could smuggle Tic-Tac’s into school!). I did however have to refuse his request to install a flame thrower in his thumb! "I spent many more evenings teaching myself Computer Aided Design (CAD) and Solid Modelling, so that I could design a high quality original prosthesis from scratch. This was extremely difficult, and I had to rely heavily on the engineering experience I gained whilst serving in the Royal Air Force and working at Rolls-Royce. It took me a long time to get right, and I am still learning; constantly making improvements. But I think I am there now. I can design and make an original bespoke prosthesis, below wrist, as long as there is some or limited wrist movement present. I hope to introduce sensors and motors into a future design to give improved performance. "My aim from the start was to make a finished product to a very high 'factory' standard for my son. With sheer determination, Jack and I did this. Jack is very pleased with the final product so far and his confidence has grown remarkably. He is incredibly happy and is constantly coming up with ideas and improvements to make his new hand even better for him. The latest feature is a thumbnail on one of his fingers, so that he can attempt to play a guitar. He has also asked for a hand


with a socket to hold a tennis racket; I’m not sure how I’m going to do that yet! "He has very effectively used this device over a period 6 months. He is a changed boy. The only issue we had, was with a few ‘rub’ spots, that have been corrected by adapting the socket shape. Another fundamental issue was of Jack growing. Luckily we can easily re-scale his hand to make it bigger, using the software and 3D printer to keep pace with him. He has a hand for life. "This has been a great journey for Jack and me. If I can help anyone by sharing the work I have done, I will be happy to do so freely. I am not yet at a stage where I can mass produce specific hands for people other than Jack due to my work and family commitments: however, I am open to designing/manufacturing a number of these in the future for children who may need a below wrist prosthesis, if there is enough interest. If you would like further information about the hand we built, the tools we used, materials, assembly, 3D printing, design or anything else, please do contact me at: ArticulateUK@ hotmail.com "I will freely give help and share everything we did, in the hope that our experience may help and inspire others." Neil and Jack Antrobus, Skipton, North Yorkshire.

MIDWIFERY AND MATERNITY

THE LiMITTless REACH PROJECT An amazing opportunity for 25 lucky Reach children aged from 3 to 18 years! Reach and Mitt Wearables are really excited to announce their collaboration and commitment to supplying *50 Reach children access to Mitt prosthesis for FREE for a whole year! Mitt are on a mission: Project LiMITTless is an ongoing project aiming to give all children with below elbow limb loss access to a Mitt. A bold ambition, but one that Mitt are trying very hard to accomplish with the help of Reach, the LimbBo Foundation, and some amazing donors. *25 children have already been preselected as previous BETA triallists of Mitt, however there are still 25 spaces available for Reach members to register for. The only criteria are that your child is aged between 3 and 18 years old, has a limb difference below the elbow and is a Reach member. If you are one of the lucky 25 to be selected to be part of the LiMITTless Reach Project, you will receive: 2 x Mitt Sleeves 2 x Tools The ability to swap sleeves at any time The ability to swap tools at any time Access to our exclusive user Facebook group Access to our tool user guides / video You need to register by midnight Sunday 5th April. This is an exciting programme and the number of spaces are limited but growing. If you don't make the 25 you could be lucky and join the next cohort! This is an amazing opportunity that Reach is very proud to be a part of and we are hopeful that this partnership will continue and further projects will happen. Find out more and register at www.wearmitt.com have. Getting the word out about Reach is crucial.

Sharon Payne Stuart joined Debs Bond and Kate Hoare in January at the London 2020 Maternity & Midwifery Festival. Given the very different experiences of Reach parents when their babies are born it is so important to get the word out to the midwives about Reach so that the charity can step in with reassurance and support right from the start. You only have to read the comments from our new members on page 14 to see how big an impact joining Reach can

Irish Branch Co-ordinators Lorraine O Farrell and Donna Flynn were joined by Debs Bond and Kate Hoare from head office and the new Northern Ireland Co-ordinator Ruth Hompstead at the All-Ireland Maternity and Midwifery Festival in February. They spoke to trainee and trained midwifes and gave out loads of leaflets. Debs is sourcing ads in the midwives magazine and social media ads, step by step getting the Reach name out there.

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BRANCH AND MEMBERS NEWS Louise Artherton-Howlett and her Reach son Jack have collected £25.21 at the Acle Indoor Bowls Club. "I had to smile recently when Zak was at the bowls club, as one of the members gave him £2. Instead of putting it in his pocket or buying some chocolate, Zak decided to put it in the Reach collection tub 'for my friends' as he put it! "He loves his 'Reach friends' so much!

GUTHRIE MAKES THE NATIONAL TEAM Guthrie Doig Henderson, aged 14, has been awarded his Philippine National Rugby Team Jersey (U16s) at a special event in Manila.

GB CALL UP FOR BECCA SCOTT Sports all-rounder Becca Scott has been invited to join the GB Para Athletics Programme. The programme is the first of three tiers of the Paralympic Development Academy, which aims to prepare athletes for the 2024 Paralympic Game in Paris. Becca was spotted at the National Junior Disability games and has been selected for the long jump. She will also be expected to compete in other disciplines, such as 100m and 200m, as well as developing her overall athletic capability. The programme focuses on supporting athletes through specific technical development, learning from some of the best athletes in the country. There is a tough selection process, prioritising those who have potential to win medals at future Paralympic games. “It came as a surprise," said Becca, "But I am so pleased to have been selected. It has been a great experience to work with the GB long jump coach, Roger Kellar, and I am looking forward to continuing the programme. The BMS Sports Department have been really supportive, helping with strength and conditioning work, as well as training me in athletics and other sports.”The programme started in January.

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Here he is in action in the Philippine Rugby League.

YOU DON'T ALWAYS NEED TO WORRY ABOUT STARTING SCHOOL! When Reach children start school it can be a really worrying time for parents. So please take heart from mum Joanna Allen‎'s experience. "I wanted to share a feel good moment after parents evening for James, our Reach son who is five," she said.

Harrison Kirk, from Bristol swam 5metres, no arm bands/floats. Aged four. His parents dream of a glittering future! Paralympics in few years time?

"It was so lovely to hear his teacher talking about him accessing all areas of the curriculum, fully participating in PE and confidently standing up in front of his class to be able to contribute. "I’m sure I’m not alone in having my fears of how James’ limb difference will challenge him as he grows up and I never cease to be amazed at how independent, adaptable and creative he is at not letting it stop him one bit."


BRANCH AND MEMBERS NEWS CELEBRATING MILESTONES! Jo-Jo McQueen won Swim England Swim Teacher of the Year and she said that since she was a child, the Reach message of ability played a huge role in her pushing to be successful regardless of disabilities.

Evie Macleod and her brother Blair enjoyed double success when they competed in a gymnastics competition. They each won silver medals in their respective age groups. Evie is another all-rounder. She got her green belt in karate and came second in a group dance competition which included schools from the whole of South Ayrshire. Logan Lusk has succeeded in moving up anothergrade in Taekwondo.

Cesca Byers has learned to do her first pony tail and took part in her first football match and goal.

He is now proud possessor of a new Blue Stripe belt.

Mum Danielle Sutton wrote: "If you'd have told me five years ago that Ella would be at the top of these climbing walls I'd have found it so hard to believe! "Nothing stops her..... So proud!"

William Heal passed his second set of gradings for Mini Samurai. Mega- proud moment for mum Becky-Bethany.

Isabelle Newman aged 3 absolutely loves her swimming, said mum Amy. She started having weekly lessons from the age of just nine weeks with Waterbabies Swimming School. She has recently joined another local swimming school for older children. She isn’t far off swimming the width of the pool without any flotation aids and her teacher is amazed by how much she uses her arm. This is a deep pool so no feet on the floor!

Jake Vosloo proudly shows off his Sussex cricket gear. He did trials in September and has been chosen as part of the Sussex Cricket Pathway for under 11s. "We're very proud of his achievements and dedication to training, particularly as he's been selected in the mainstream group," said mum Clare. "He's also been selected for specialist spin bowling training ...... even more amazing is he only has two fingers and a thumb on his spin bowling hand."

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BRANCH AND MEMBERS NEWS NORTH LONDON CHRISTMAS MEET UP AT FLIP OUT The North London Branch post Christmas bounce took place on Saturday 25 January at Flip Out Trampoline Park in Brent Cross.

THE REACH FAMILY WEEKEND 23RD TO 25TH OCTOBER 2020 MARRIOTT MANCHESTER VICTORIA & ALBERT HOTEL

REACH ACTIVITY WEEK (TBC)

After the bounce everyone enjoyed pizzas and sandwiches and the opportunity for parents to chat and the kids to make friends.

IRISH BRANCH FUN

26TH JULY – 2ND AUGUST 2020

Carlton Lodge Outdoor Centre, Carlton Lodge, Carlton Miniott, Thirsk, YO7 4NJ.

HERE'S SOMETHING TO LOOK FORWARD TO! Booking for this year's

Kent & East Sussex Family Weekend is now open!

25th - 27th September 2020

for another family fun-packed weekend. Running for its third year, we are delighted to invite you once again to the Southern England Family Adventure Weekend at the lovely Swattenden Centre Cranbrook, Kent, TN17 3PS. There is only space for approximately 14 families on a first come first served basis, so make sure you book early to avoid disappointment!

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– r The Irish branch held meet-ups in Dublin and Athlone, 130km apart, involving 12 families and 18 kids! The two family meet ups took place on 23rd February. There was a younger gather from babies to eight years in JumpforJoy Athlone (the biggest indoor softplay in the Midlands). The children had loads fun in the massive bouncy castle room, on the bumper cars and the trampoline bounce. We then finished off the outing in the party room for finger food and cake. At the same time was another event at Awesome Walls, Dublin. This was aimed at our older children from seven plus. The children wall climbed some of the highest indoor wall climbs in Ireland. There was much bravery on display and fun was had by all.

Reach are subsidising this event to keep your costs as low as possible, and Reach members are fundraising all year to help. We are asking for a contribution of £50 per person (under 2s are free) with a non-refundable deposit of £50 to be paid at the time of booking. You do need to be members to be eligible for this price, however if there is space we will welcome extended family members/friends at the full price or alternatively they can opt to join our charity. For details of how to join please visit twww.reach.org.uk.We will invoice for the balance in August 2020.

DYNAMIC SCOTLAND Scottish Branch organised a day out at Dynamic Earth in Edinburgh on January 12 for their Christmas meet up. They enjoyed a tour, lots of activities, Santa, food and everything!


BRANCH AND MEMBER NEWS NORTH WEST

North West held three events between September and December. Our first meet up was at Smithills Open Farm outside Bolton. The weather was wonderful (for a change!) Lots of families had a fabulous day out, feeding animals, tractor rides, donkey rides and picnic in the sun. We met some new members too.

Finally our Christmas party was once again arranged by Specialist Mobility Rehabilitation Centre in Preston. They have been doing these for a number of years now. I am very grateful to the staff at the centre for their hard work and for including Reach members, even if they don't attend the centre. Everyone who attended had a wonderful time as usual. This year's events are uncertain in the present climate. We are still here for support via text, phone, email and our Facebook pages. Cheryl Danson

We were invited to the Winter Funland VIP charity event for an evening enjoying all their facilities. They only charged a small fee which meant many families could have a wonderful christmas themed evening out.

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PIONEERING MUSICIANS Two intrepid young Reach members have been blazing a musical trail this term. Maria Grecu and Henry Luke both took part in a recorder workshop at the Royal College of Music in London, one of the country’s most prestigious conservatoires. Henry aged 5 was one of the youngest participants. He started learning the recorder just nine months ago. This is Henry with his teacher, Mr Bailey. Maria aged 9 has been playing the recorder for a couple of years. She was delighted to achieve a distinction in her Initial Grade exam last term and is currently working towards her Grade 1. Here she is in her Reach colours in the RCM entrance hall just before the workshop. The RCM teaching team, led by Sally, were enthusiastic, warm and inclusive. The workshop also had a visit from a professional recorder group, who were able to show off their range of recorders of all shapes and sizes (some even bigger than an adult). Maria joined in their ‘show and tell’, to explain how the Reach recorders worked. She and Henry were both very proud to be playing special recorders, and the other

players were very interested in them. Both Henry and Maria said they were a bit nervous about the event before they got there but both had a whale of a time. They had fun playing together and making friends with the other children. Everyone learned a lot about music and the art of performing, in an exceptionally beautiful setting.


SOUTH WEST Three families met at Flip Out near Wellington in Somerset and had a wonderful time on the trampolenes, assault courses and soft play. One of the Reach members was Bob, an adult member who had lost his hand as a child. He was brilliant, passing on his experience of a lifetime living as a one-handed person. He just uses a Mitt Wearable to play the drums!

EAST ANGLIA WITH EAST MIDLANDS

The two branches got together for a Christmas event at Kidsplay in Kettering. It had fantastic soft play and the seven families who came had an absolute blast, said organiser Laura Hanley. Santa made a surprised visit and all the children received a gift.

BITTER SWEET NEWS FOR ROBERT

THE EASIEST WAY TO PAY YOUR SUBSCRIPTION IS BY DIRECT DEBIT. USE THE FORM BELOW.

Robert Donald not only passed his driving test at the first attempt but he also had a wonderful opportunity to train with the GB Para-badminton Olympic squad. And he impressed them so much he was invited to join a number of the England players at the Spanish Para Badminton International 2020 in March Then came the virus and sporting fixtures were cancelled."We were gutted," said dad Andrew, "Never mind - there will be other tournaments."

EASY INKJET FUNDRAISER Did you know that you can help us raise funds for Reach simply by recycling your ink cartridges via our Recycle4Charity programme? For each inkjet cartridge recycled via the programme Reach will receive a ÂŁ1 donation, meaning you can help the environment whilst raising money for us! To start, all you need to do is go to http://www.recycle4charity.co.uk/Home and sign up for your free account. Then you can order Free post recycling items, post back empty cartridges, Reach gets the cash. Easy! Charity Nos: England & Wales 1134544 and Scotland SCO49805.


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