Kidz to Adults Magazine Issue 14

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ISSUE 14 / SEPTEMBER 2021

IN THIS ISSUE... WHAT IS PARENT CARER BLAME? KIDZ TO ADULTZ NORTH – WHAT CAN YOU EXPECT TO SEE? ORGANISING A FUNDING CAMPAIGN LIFE IS A ROLLERCOASTER SPOTLIGHT ON SERVICES IN SCOTLAND


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Welcome!

WELCOME TO OUR LATEST ISSUE

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can’t believe how quick the summer holidays have gone. I hope you had the opportunity to have a staycation and take advantage of everything the UK has to offer – including the good weather! The children are now back at school, so take five minutes to have a break and read the latest edition of the Kidz to Adultz Magazine. Hopefully, there won’t be as much disruption this term with Covid, as there was earlier in the year. We have a wonderful article from Joanna Brett, mum to Sebby and Lottie. Joanna tells us about the challenges of not having a diagnosis, a trip to America and how Sebby’s experiences led to big changes at a theme park. Have you thought about starting a fundraising campaign, but don’t know how to go about it? The charity, Tree of Hope offers practical advice and can support you on your journey. Staying on funding theme – we have Part 2 of the Funder Finder. The first LIVE Kidz to Adultz exhibition since the onset of Covid will be held in November in Liverpool. Liverpool has so many fabulous visitor attractions you can really make it a day out. Take a look at what you can expect, register and get email updates as more and more companies book! Here at Kidz HQ, we are super excited to welcome you back. There is an update on service provision for our readers in Scotland, we hear about a career change for a social worker and there is so much more...

CONTENTS... Life is a rollercoaster: challenges from all directions..............................5 Institutionalising parent carer blame........................ 12 Kidz to Adultz North......... 15 From social worker to designer.............................. 20 Thinking of organising a funding campaign?........... 24 Funder Finder: Part 2........ 26 Spotlight on... Scottish charities.............................. 30 ‘Yoo-hoo, I’m in the loo the noo!’: What’s new on the toileting front in Scotland?............................ 32 Festivals are back!............ 34

Carmel Hourigan Editor & Manager Kidz to Adultz Exhibitions Disabled Living #kidztoadultz

FANCY BEING IN THE NEXT ISSUE?

If you would like to talk to us about promoting your company or organisation in the next issue of Kidz to Adultz magazine, call us on 0161 214 5959 or email us at magazine@disabledliving.co.uk

Disabled Living, Burrows House, 10 Priestley Road, Wardley Industrial Estate, Worsley, Manchester, M28 2LY

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s n o i t a l u t to a r g n o C

Team GB

124 medals, and a new generation of athletes and sportspeople with disabilities inspired.

10 in am trying onwards at the parasport? JOIN US Interested Quadrangle. Find out what is near you via EVERY DAY ParalympicsGB here. For a full schedule of activites, THIS WEEK visit www.reallygreatsite.com

Hannah Cockroft, Wheelchair racer and gold medallist


LIFE IS A

rollercoaster:

CHALLENGES FROM ALL DIRECTIONS

JOANNA BRETT’S SON SEBBY HAS BEEN WITHOUT A DIAGNOSIS SINCE HIS PARENTS FIRST NOTICED HIS DIFFERENCES IN PHYSICAL DEVELOPMENT AS A BABY. HERE, SHE TALKS ABOUT THE CHALLENGES FACED BY HER FAMILY AND THE OPERATION THAT COULD MAKE ALL THE DIFFERENCE – BUT ISN’T AVAILABLE IN THE UK

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hen Sebby was born, the life ahead of us was very different from what we had imagined. By 10 months old we had taken Sebby to the doctors as he had missed most of his physical

milestones and wasn’t even sitting yet. When he was around 18 months old, I asked the doctor, ‘Is it just that he is a bit delayed?’ This was followed with a deafening silence before the awkward reply of ‘no’. By

this stage I was pregnant with our daughter and there were concerns that whatever was preventing him moving properly was genetic and would affect her. Fortunately this hasn’t been the case.

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Sebby mainly struggles with strength and movement in his legs and core. Three MRIs, many blood tests for genetic analysis and a lumber puncture have not managed to reveal the cause of his disability. Sebby is affected by spasticity which is painful. We heard about an operation called Selective Dorsal Rhizotomy (SDR) where his spine is opened, 70% of his sensory nerves are cut, which removes most of the spasticity. After a lot of research, we decided this operation was definitely the right thing for him. Frustratingly, two hospitals in England turned him down, mainly as he was undiagnosed. We felt it didn’t matter what caused the spasticity; he had it and it was already causing damage to his hips. The spasticity needed removing for him to stand any chance of waking. Because of the pain, we thought if nothing improves mobility-wise, it would still be worth it to improve his quality of life. We applied to St Louis in America, where the surgeon had performed four times more operations than all the surgeons combined in England. We were thrilled when he agreed that Sebby was a candidate! Six months later we took four-year-old Sebby and three-year-old Lottie to America for a month, to have SDR, tendon lengthening and intensive physio for three weeks. We returned a week late into the start of his reception year at school, feeling positive. Unfortunately, he needed other operations as the spasticity that was in his body had caused damage. Six months after SDR, he had a double hip operation where both femurs

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were cut then reangled, and one hip reshaped (then the metal removed a year later). An ingrowing toenail became infected due to the way his foot twisted inwards when he trying to walk, and this needed to be operated on. As he started walking with his sticks more frequently, we noticed his feet were always angled inwards which prevented him standing properly. The operation was delayed because of Covid-19, but nearly two years after the SDR operation the subtalar joint in both his ankles were fused together. He was in casts up to his knees for six weeks. All of these operations were essential to enable him to get closer to the goal of walking, but they inevitably had a physical and emotion toil on him. He builds his strength up, loses it after the operation, then has to build his strength up again while adjusting to the changes in his body. Covid-19 contributed to his frustration as his progress was hindered when all of his therapies were cancelled during

lockdown, with only one physio able to see him. Sebby works so hard, as most disabled children do, and he’s an amazingly resilient kid. Each week he does physio, strength training, sports, counselling and lots of work at home. We also spend most school holidays doing intensive therapy. Life is difficult. With all this hard work it’s important for his mental health to have a lot of fun. As a treat for four operations in seven months, we took him to Legoland. Sadly, instead of being a happy occasion, he left feeling inferior and humiliated. On the ride Sebby was most excited about – Ninjago – he was forced to leave his wheelchair and take three steps in front of a busy queue of people. Amazingly he did it, but then was asked to leave the carriage and do the steps again. The ride which should have been a joy, was tainted. “Mummy, why would anyone make a disabled child walk?” he said afterwards. “It was hard, I


After a lot of campaigning, Legoland engaged positively with us. They have now changed their policy and committed to looking into further improvements, including ensuring new rides are accessible. Children like Sebby are now able to access all but one ride. We’re incredibly proud of Legoland and call on other theme parks to follow their example. Sebby and Lottie are happy kids, with an extremely unusual start to their lives. Sebby has a terrific carer at school and loads of friends. We have met wonderful people who help him get stronger, and organisations that adapt to include him, enabling Sebby to have fun. We’re forever grateful. He continues to improve regularly, and often amazes me when he suddenly succeeds on a physical challenge he’s wanted to overcome. He’s just walked with his sticks in the sea and across the rocks, something which a few months ago seemed impossible. We don’t know if he’ll ever be able to walk without aids, and suspect he will always be disadvantaged, but his mental strength and resilience will help him in everything he does.

didn’t want to do it, and it’s made me very sad.” My fury towards the way he had been treated turned to heartbreak for the pain he was suffering. On another ride we left his wheelchair and put him on his dad’s shoulders, where he looked like any other kid. He was not asked to do the steps. We wrote about his experience on his Facebook page – Sebby’s Adventure – where we share our positive outlook about his operations, difficulties and successes. We were overwhelmed and shocked to hear from so many other disabled families, sharing their similar experiences across a variety

of theme parks. I couldn’t let Sebby or Lottie – who has been dragged to his many hospital and physio appointments since she was two weeks old and lay in his hospital bed after his operations, checking he’s ok – think this treatment was acceptable. We were convinced Legoland could make a positive change, without disadvantaging able-bodied people. We created a successful petition to parliament, achieving 27,500 signatures, leading to our supportive MP Siobhan Baillie making a speech in Westminster Hall. We also asked the fantastic specialist disability solicitor Chris Fry to have discussions with Legoland.

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You can take part in: • Surveys • One to one interviews • Focus groups and workshops It’s a great way for you to use your lived experiences and have your say. All our projects are online at the moment, and there are no minimum time commitments. Most projects will thank you for your time and effort with vouchers, which you can spend online or in shops.

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Institutionalising PARENT CARER BLAME

‘TRAUMATISING’, ‘DEVASTATING’; ‘LIKE THE POLICE TURNING UP AT YOUR DOOR AND SAYING WE’VE GOT A WARRANT TO SEARCH YOUR HOUSE’

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espite disabled children and their families being one of the most severely disadvantaged groups in the UK, these are just some of the many comments made by parents and carers who felt that the process of seeking support for a disabled child was humiliating. A major research report recently published by children’s charity Cerebra and the School of Law, Leeds University found that most English Children’s Services Authorities operate a ‘one size fits all’ approach to families – regardless of whether it is a parent carer seeking support for a disabled child or a family where

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the evidence suggests there to be neglect or abuse. The effect of this approach is to create an institutional culture of ‘parent carer blame’. The research considered the experiences of disabled children and their families of the process by which their needs for care and support are assessed. The research was led by Professor Luke Clements and Dr Ana Laura Aiello with the assistance of 48 student volunteers and involved the analysis of the assessment protocols of 143 English children’s services authorities and a survey of 92 English parent carer-led support organisations.

The findings revealed that the national guidance (Department for Education Working Together to Safeguard Children, 2018) that directs the process by which disabled children are assessed in England is not fit for purpose and arguably unlawful. Its focus is on safeguarding children from parental neglect and abuse. None of the local protocols contained a clear explanation that a different approach should be taken concerning the assessment of the needs of disabled children where the referral was not accompanied by evidence of neglect or abuse. 80 per


cent required the assessor to confirm if the ‘child’s bedroom has been seen’ and 87 per cent referred to the need of seeing (or communicating with) the children alone. None gave guidance to assessors concerning the need for cogent grounds to exist before seeking to see a child’s bedroom or seeking to interview a child in the absence of their parent. Policies of this nature interfere with the fundamental rights of families to respect for their private and family lives and their home and are discriminatory in that they treat disabled people and their families in the same way as people whose circumstances are materially different. 86 per cent of the parent carerled support groups who responded to the research survey considered the assessment process that parents and their disabled children experienced to be extremely unsatisfactory and intrusive. They highlighted the assessors’ lack of training, experience and understanding of disability and its related challenges; an assessment process focused on safeguarding / child protection rather than on support; the intrusive nature of the process, with families reporting they felt they had no real choice about whether the assessor inspected their child’s bedroom and interviewed their children in their absence. Mehreen (from Bingley, West

Yorkshire) is a single parent to Assad, who is seven years old and autistic. She told the BBC about the struggles and humiliation that she had to endure to get support from Bradford Council. She felt uncomfortable during the assessment, with the assessor asking what Mehreen thought to be intrusive and safeguarding focused questions: ‘They really left me thinking whether they are questioning, albeit indirectly, my parenting abilities or my personality or me as a person or if I was fit even to be a parent to Assad.’; ‘It made me feel incompetent as a parent and that's not something I've felt before.’ She also said assessors asked, on three occasions, to see Assad’s room. Paula (not her real name - a Mum from West Berkshire) told the research team: ‘I felt bullied … suddenly a stranger in our house demanding we answered these questions. We had no choice. It just was really, really horrible … and then she wanted to see [child’s] room … and I [asked] why is that relevant to you coming to assess me [for a PCNA]? … and she just said ‘Oh, it’s just standard - just what we do’ and again I just felt that we can’t deny it because again, you’ll think, ‘What am I hiding?’ I just felt we were being treated like criminals … it was almost like the police turning up at your door and say we’ve got a warrant to search your house.’

The research team is now focused on achieving change at the ‘coal face’. Urgent action is required to address the research findings and enable the families of disabled children to access a valid and supportive social care needs assessment. For example, the team is working to support parent carer groups to have meaningful discussion with their local authorities, to bring about changes in their policies and practices. Cerebra is a national charity helping children with brain conditions and their families to discover a better life together. Their Legal Entitlements & Problem-Solving (LEaP) Project is an innovative problem-solving project with the School of Law at Leeds University that helps families of children with brain conditions cope with the legal barriers they face. Cerebra’s in-house research team listens to families and helps them get the knowledge they need to access health, social care and other support services. A wide range of parent guides, factsheets and template letters can be downloaded free of charge from the Cerebra website. The experiences of families are critical as, through this continuous contact, the team are able to identify common legal problems that prevent families from gaining access to care and support services. They then seek to develop innovative ways of solving those problems and to share solutions as widely as they can so that as many families as possible can benefit.

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north KIDZ TO ADULTZ

COME AND JOIN US IN LIVERPOOL AND MAKE IT A DAY OUT! 45 min from Chester 1 hour from Manchester 1.5 hours from Lancaster The first Live Kidz to Adultz Exhibition since the start of the pandemic. We are so looking forward to seeing you.

Kidz to Adultz North Wednesday 17th November 2021

ACC Liverpool, Kings Dock, Liverpool Waterfront, Liverpool, Merseyside, L3 4FP 15


north KIDZ TO ADULTZ

Wednesday 17th November 2021

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NEW PRODUCTS AND SERVICES NEW VENUE, FABULOUS FACILITIES NEW FAST TRACK REGISTRATION SANTA IN HIS GROTTO COMPETITIONS AND PRIZES FULL SEMINAR PROGRAMME – 2 VERY LARGE SEMINAR ROOMS

CHANGING PLACES FACILITY & MOBILOO MANY NEW EXHIBITORS FULLY ACCESSIBLE CHILDREN WELCOME CPD ACCREDITED EXPERT ADVICE PRODUCT DEMONSTRATIONS FRIENDLY WELCOMING TEAM

OPPORTUNITY TO SEE LIVERPOOL VISITOR ATTRACTIONS AND THE CHRISTMAS LIGHTS

4 METER WIDE AISLES OVER 150 EXHIBITORS 17


Our regular visitors have asked – why have we made the move to Liverpool? The simple answer is, we keep growing! Unfortunately, there is no longer a venue in Manchester which is large enough to support the expansion of the Kidz to Adultz exhibitions and at the same time tick the boxes we require to ensure our visitors have the best experience possible. EventCity, the venue which had been home to Kidz to Adultz North for the last seven years is to be re-developed into a wellbeing resort. However, you never look back, you look forward. So, if you have not yet visited Liverpool, November is the time to do so! With excellent motorway and rail links the venue is highly accessible. As we bounce back from what has been a challenging eighteen months, we cannot wait to welcome visitors back to Kidz to Adultz North.

REGISTER HERE Follow us... Social icon

Circle Only use blue and/or white. For more details check out our Brand Guidelines.

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WHO IS THIS EVENT FOR? This event is dedicated to children and young adults with disabilities and additional needs, their parents, carers, and the professionals who support them. 180+ exhibitors offering advice and information on: • • • • • • •

Funding Mobility Seating Beds Communication Access Accessible vehicles

EXHIBITOR LIST

• • • • • •

Education Legal matters Clothing and fashion Sensory Sports activities Holidays and leisure ...and much more!

BOOK A STAND

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FREE CPD ACCREDITED TOPICAL SEMINARS Boost your CPD portfolio and gain credits by attending one or more of the FREE CPD seminars taking place alongside the exhibition. Seminars are presentations covering a wide range of issues and interests to families and carers of children with disabilities and special needs, and the professionals who work with them. Topics include: toileting issues, autism, transition, employment, seating and much more! SEE WHAT OUR EXHIBITORS AND VISITORS HAVE TO SAY: Bundlebean: “We had our best experience yet at Kidz to Adultz North. We met loads of gorgeous kids and young people and just had a wonderful time. We sold out of three lines of stock by 11am! Thank you so much for putting on another fab show.” Parent: “What an amazing event! Disabled Living really do think of everything. There’s so much information and everybody was really friendly. It was great that we could try out equipment and have a better idea of what we’re looking for.”


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FROM SOCIAL WORKER

to designer

CARON MCLUCKIE’S CAREER AS A SOCIAL WORKER WAS FULFILLING AND REWARDING. HOWEVER, HER ENTREPRENEURIAL FLAIR BEGAN BUBBLING WHEN HER FASHION CONSCIOUS SON EMILE SOUGHT A SOLUTION TO A COMMON PROBLEM. SHE TELLS KIDZ TO ADULTZ MAGAZINE ABOUT THE JOURNEY OF BEALIES ADAPTIVEWEAR

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n January 2016, our lives changed forever. While out with my son Emile one Saturday afternoon he suffered a spinal cord stroke. Just like that, with no warning. The spinal

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stroke left him paralysed from the chest down. I was amazed at how well Emile coped with this traumatic event; his resilience was astounding. Emile now has no bladder or

bowel function, and we must selfcatheterise to empty his bladder. Once we got into our daily routine it soon became clear that clothes didn’t fit properly whilst he was sat in


his wheelchair. More importantly, the comfortable joggers that Emile likes to wear didn’t provide easy access to catheterise.

THE IDEA I undertook research and spoke to a range of people including wheelchair users, carers, physiotherapists, and occupational therapists to find out the issues they faced when getting dressed or supporting someone to dress. With this research, and my own experience with Emile, I approached the Fashion Institute at Manchester Metropolitan University. They had been researching, along with the Stroke Association, the difficulties that stroke survivors face when trying to find suitable clothes when returning to work. Students Rebecca and Melissa Everett were excited by my idea of fly frontopening joggers, and they wanted to make a prototype.

THE PRODUCT: ADAPTIVE JOGGERS The idea resulted in bespoke joggers with a unique opening to enable comfortable dressing and catheterising. They are higher at the back to avoid sagging whilst sitting and transferring to ensure everything is covered. I have been working with a small focus group of people, who range from having a spinal cord injury in adulthood to people with cerebral palsy. We identified that there is a difference in muscle mass in the legs for people who cannot bear weight or have been spinal injured for a long time, and as a result have lost muscle mass over the years. Therefore, we are redesigning the joggers to have a slim fit leg, which is the current fashion, and we will also have a regular fit for people with more muscle mass on their legs, to ensure a better fit for different disabilities and all shapes and sizes. A small run of the joggers is due be made and launched in September 2021. I am delighted to have two brand

ambassadors: Shaun White (on the left in the image) and Paralympic athlete James Freeman (second from left in the image). James represented team GB in the 100m track in the Paralympics in Tokyo this year.

TESTIMONIALS “Having been a paraplegic for over 35 years, I am familiar with the search for comfortable clothing that look and feel great but are practical for the kind of user that sits down all day. The Bealies Joggers are the holy grail of leisure wear for wheelchair users, particularly if you self-catheterise.” Customer “With the offset zip it is possible to catheterise yourself easily, without fuss. With that is the quality of materials and construction of these pants. The material used is soft and durable, the zip is large and easy to grip, and the seat is manufactured with a higher back to keep you covered. There is a pocket on the front/side to keep your mobile phone where you need it.” Customer “The Bealies Joggers have been well thought out, well designed and well manufactured and you should buy yourself some today.” Phil, Cheshire “I wore them on Tuesday for teaching PE. They were good as they did

not fall like other pants. Plus, the zip bit at the side helped when catheterising. The leg part fitted well, especially when transferring. Plus, I was able to pull them up while in the chair. Overall, I loved them. If I were to buy a pair, I would get the next size down.” Andrew, Lancs

ABOUT ME I am a 55-year-old mother of three children: Theo, 26, Emile, 19, and Esther,17. We live in Stockport, Cheshire. After taking early retirement from my career as a mental health social worker I felt ready for a new challenge. I believe in the Bealies product and feel that there is a gap in the market for casual wear for wheelchair users which is fashionable as well as functionable. Esther’s nickname for Emile is Bealie so I decided to name the business Bealies Adaptivewear. I am passionate about supporting manufacturing in the UK. My mother was a home machinist when the clothing manufacturing industry in the UK was strong, so I will be producing the joggers in England and have identified a manufacturer in the Midlands.

SHOW ME THE MONEY! I have been crowdfunding to raise money to fund the first run of the

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expensive, range of clothes each season. There is a clear market for Bealies Adaptivewear, and the business has the exciting potential to grow.

REFERENCES https://www.theguardian.com/ fashion/2019/dec/30/why-2019was-a-landmark-year-for-disabledfashion.

THE FUTURE FOR BEALIES ADAPTIVEWEAR • joggers. I am producing a small run of the adaptive joggers to identify any teething problems, fine tune the patterns and materials before producing the joggers on a larger scale. The crowdfunder campaign is still live and open to pledges. https:// www.crowdfunder.co.uk/bealiesjoggers

WHAT DO YOU NEED TO KNOW ABOUT ADAPTIVE CLOTHING? •

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In the UK there are approximately 1.2 million wheelchair users and 13.9 million disabled people. (Family resources survey 2016/17) There has been a steady rise in people searching online for adaptive clothing. (Global fashion search Lyst 2019) The only mainstream designer

who has an adaptive range at present is Tommy Hilfiger. However, being an expensive designer brand, these items are far from accessible to everyone. • The disabled market is worth £249bn. Known as the ‘purple pound’, people with disabilities remain the largest untapped consumer market. The UK high street does not yet reflect this shift. Unlike the US, where a handful of mainstream stores have adaptive lines, UK retailers remain slow to enter the market. Designers must address the unmet demand for disabilityfriendly workwear and occasion wear as identified in the project with Manchester Metropolitan University. Marks and Spencer are selling an easy dressing range for children in stores and online and as mentioned above, Tommy Hilfiger has had some success with its inclusive, yet

I would like to continue to add to the collection using the template of the fly front opening to use different materials, adaptive shorts, longline T-shirts and unisex pieces to be more inclusive for all disabled people. The range will be modelled on mainstream fashion and will be updated seasonally. I want to continue to manufacture the products in the UK and would like to set up as a social enterprise and open a micro-factory where we can support adults with learning and physical disabilities to learn a trade, and make the joggers and other products here in the UK.

STAND I will be exhibiting at Kidz to Adultz North in November. Come along, say hello and take a look at the joggers.

H3


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THINKING OF ORGANISING A

funding CAMPAIGN?

NATIONAL CHILDREN’S CHARITY TREE OF HOPE HAS BEEN TRANSFORMING THE HEALTH OF SICK AND DISABLED CHILDREN ACROSS THE UK FOR OVER 30 YEARS

T

hey help families to raise funds for needs associated with any healthcare condition or disability, and provide families with more effective fundraising avenues thanks to having a charity backing their campaign. Caring for a child with a disability is three times more expensive than raising a child without a disability. It

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is also a rollercoaster of emotions and experiences. On top of parents often having to reduce working hours to care for their child, benefits including Disability Living Allowance don’t keep pace with the extra costs involved with raising a child with additional needs. Recommended equipment and services from therapists and medical teams

HERE ARE SOME TOP TIPS TO CONSIDER FIRST OF ALL:

1

Who can you get to help? Fundraising is much more enjoyable when others are involved. Gather a small team of family and friends so you’re not doing everything on your own.

2

Your friends and family are your most ardent supporters so make them aware of what you want to achieve and get them to help spread the word.

3

Social media is a great tool to make lots of people aware of your campaign quickly. Our social media guide will help get you started!

4

Fundraising does require you to put yourself out there which is a personal choice but can be a lot less scary than families often think.

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Get in touch! Our family support team are always happy to chat if you want to find out some more information about fundraising. Email families@treeofhope.org. uk or call 01892 535525.


come at a premium and with the NHS under increasing amounts of pressure and waiting lists growing, how do you do it? Charity fundraising is the most tax efficient way to fundraise, with the tax man giving 25p for every eligible £1 donated, taking care of a chunk of your fundraising target. Families also have access to support from businesses, donor reassurance that money will be used for a child’s benefit, help to expand donor networks, and increased access to trust and foundations and matchfunding opportunities, making it much more effective than traditional crowdfunding platforms. Tree of Hope also provides weekly fundraising advice and ideas. Campaigns have complete financial management provided giving families peace of mind, as well as providing greater exposure with dedicated marketing support through social media and PR opportunities. This is Grace. Grace has a mutation of the gene RHOBTB2 (c.1448G>A)

and she is currently one of around 38 people diagnosed around the world. Grace’s family joined Tree of Hope in 2017 to fundraise £100,000 to pay for specialist therapy, home adaptations and equipment to give her every opportunity to thrive and develop. “Tree of Hope have been an amazing organisation that have gone above and beyond to not only support my little girl Grace, but also so many other children. We have been doing numerous fundraising events and Tree of Hope have always been there for help and advice and how best to get the most out of our campaign. Through social media, telephone communication or email, support is always on hand.” William’s parents onboarded with Tree of Hope in 2019. William has a rare neurogenetic condition, called Angelman Syndrome. This is a chromosome 15 deletion which leaves him facing a life of therapy to learn to walk, sit and communicate as well as ongoing home adaptations and equipment needs.

“Having the support of Tree of Hope taking care of the payment processes, and conversations with the suppliers, takes the worry out of it for us. There were always people and companies that couldn’t give to us directly, but with Tree of Hope, we have more funding opportunities. Having the gift aid also makes such a difference and has meant we’ve been able to buy a specialised bed quicker for William than we ever imagined!”

DO YOU WANT TO RECEIVE A COPY OF BBUK’S

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NEWSLETTER?

ladder & Bowel UK produce a quarterly e–newsletter specifically for people of all ages who may have bladder and/or bowel problems or those who need support with toilet training. This really useful newsletter offers information, advice, practical solutions, product news and a whole lot more. If you would like to receive a free copy please email bbuk@disabledliving.co.uk You can look at recent editions of the Talk About newsletter on the BBUK website https://www.bbuk.org.uk/newsletter/

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FUNDER

finder

PART 2

THE TEAM AT KIDZ HQ HAS ACCESS TO OVER 1,500 CHARITIES WHO PROVIDE GRANTS TO CHILDREN AND YOUNG ADULTS. THESE GRANTS RANGE FROM £10 FOOD VOUCHERS TO LARGER CONTRIBUTIONS INCLUDING GRANTS FOR DOMESTIC ITEMS SUCH AS WASHING MACHINES, WHEELCHAIRS AND HOUSING ADAPTATIONS

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ia the Equipz helpline we may be able to assist you or your clients to access funds which may be available from: • General Charities • Occupational Charities

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• • • •

Charities by Beneficiary Illness and Disability Charities Livery Companies Orders and Membership Organisations

Equipz Helpline 0161 214 4591 or email info@disabledliving.co.uk


Variety the Children’s Charity offers practical, tangible help that makes an immediate difference to children and young people aged 18 and under. This includes grants for specialist disability equipment and wheelchairs that aren’t available through statutory services; adapted, accessible transport for SEND schools and other non-profit organisations; and memorable day trips. Visit https://www.variety.org.uk/what-we-do/equipment-grants

Lifeline 4 Kids provide equipment to help improve the quality of life for children with disabilities and special needs from birth to 18 years. The charity provides the full spectrum of specialised equipment such as electric wheelchairs, mobility aids and items including specialised computers and sensory toys. No appeal is too large or too small to be considered. Further information can be found here: www.lifeline4kids.org.uk

Children Today helps disabled children and young people up to the age of 25. The charity provides grants for specialist equipment such as communication aids, educational toys, trikes, lifting equipment and electric wheelchairs. More information can be found here: https://www.childrentoday.org.uk/apply-now/

Whizz Kidz provides disabled children and young people with vital mobility equipment, and life journey services, giving them opportunities to build friendships and have fun, and training to help them gain skills and look forward to a bright future. To apply visit: https://www.whizz-kidz.org.uk/families/application-process

The CHIPS charity provides grants for wheelchairs that the NHS will not provide funding for, or that parents cannot afford to buy themselves. You can find out more and submit a preliminary application for funding on their website: https://www.chipscharity.org/contact-us.html

The Elifar Foundation offers grants for a wide range of specialised equipment for children and young people up to the age of 28 who have a physical or learning disability. Examples of the type of equipment funded include: manual and powered wheelchairs; mobility aids; specialised/ tough seating, beds and car seats; sensory toys and equipment; room padding; specialised communication aids and software. To find out more and apply visit: elifarfoundation.org.uk/how-we-help/ apply-for-a-grant

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Supporting families with seriously ill children, and the professionals caring for them Simone and Sue

About Simone Following a diagnosis of streptococcal septicaemia in 1998, Simone was left with secondary degree brain damage which resulted in profound disabilities. Simone passed away in January 2021.

Supporting Sue and Simone Caring for a child with a serious illness

"Together for Short Lives sent me a copy of one of their resources, and this soon empowered me." Through Voices for Families, our free legal support service, we were able to put Sue in touch with a volunteer lawyer when one of Simone's allowances was cut.

brings great joy, but many difficult times too. We are here to support families like Simone's when they need extra help. When Sue struggled with Simone's transition from child to adult services, she

“Many years have passed since I first heard of Together for Short Lives, and their inspiring work. Just knowing they were always there, when things got tough, and they did, has been a light in a sometimes very dark tunnel.“ Sue

reached out to our helpline.

We can support you too 0808 8088 100 helpline@togetherforshortlives.org.uk 28

www.togetherforshortlives.org.uk

Together for Short Lives is a registered charity in England and Wales (1144022) and Scotland (SC044139) and is a company limited by guarantee (7783702).


HELPLINE & LIVE CHAT

LEGAL ADVICE SERVICE

A, friendly, listening ear. Chat about anything on your mind.

Supporting families by matching them with a volunteer legal professional to help them to challenge decisions.

0808 8088 100 www.togetherfor shortlives.org.uk

RESOURCES & WORKSHOPS

A range of publications and factsheets on a host of topics. www.togetherfor shortlives.org.uk

0808 8088 100

How we support families How we support professionals HELPLINE

Signposting to children’s hospices and resources, and supporting staff working in children's palliative care.

0808 8088 100

DIGITAL CARE FORUM

RESOURCES & WORKSHOPS

Network and discuss any issues or topics with colleagues and peers.

Resources for professionals and a range of online webinars.

forum.togetherforshort lives.org.uk/login

www.togetherfor shortlives.org.uk/

FAMILIES: JOIN OUR FACEBOOK SUPPORT GROUP WWW.TOGETHERFORSHORTLIVES.ORG.UK/GETSUPPORT/SUPPORTING-YOU/FAMILY-GROUP/


SPOTLIGHT ON...

Scottish charities WHETHER THEY ARE UNIQUE TO LOCAL AREAS IN SCOTLAND OR UK-WIDE ORGANISATIONS WITH A SPECIAL FOCUS ON THE COUNTRY, THESE CHARITIES ARE ALL DOING GREAT WORK TO SUPPORT PEOPLE WITH DISABILITIES ENABLE SCOTLAND WHAT DO THEY DO? ENABLE Scotland’s mission is to create an equal society for every person with a learning disability. Each year they directly support more than 1,000 people across Scotland’s local authorities to be local activists, get specialist information, advice and advocacy, access community-based support across a growing network of local groups, and lead campaigns for change.

WHAT’S HAPPENING? Breaking Barriers is a programme, led through ENABLE Works, that enables young Scots who have a learning disability and additional barriers to education and employment to attend a leading and world-class business school, achieve an accredited qualification and gain real work with some of Scotland’s highest profile, iconic corporate employers.

FIND OUT MORE: www.enable.org.uk/aboutus/ how-we-are-run/about-enablescotland

DISABILITY GRANTS WHAT DO THEY DO? Disability Grants are a UK wide organization, with a dedicated area to Scotland. The Disability Grants website was born out of a frustration by the lack of accessible information on grants for these students and parents of disabled children. The site collates information from the web as well as

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individuals, therapists, teachers and other charities on grant information and resources. WHAT’S HAPPENING? Along with the website, disability grants also have a Facebook community to share helpful information and a newsletter to share resources

FIND OUT MORE: www.disability-grants.org/ grants-uk-scotland.html


THE YARD WHAT DO THEY DO? The Yard supports disabled children and young people (aged 0-25), as well as their families, through adventure play.

Edinburgh for the last 30 years, the Yard now run services in Dundee and Fife. You can take a virtual tour of all three sites on their website.

WHAT’S HAPPENING? The Yard continues to grow to need the demand across Scotland. After working with families in

The organisation are currently fundraising through a variety of sponsored events including runs and kiltwalks.

FIND OUT MORE: www.theyardscotland.org.uk

BORDER DISABILITY SPORT WHAT DO THEY DO? Border Disability Sport encourage and promote the development of sport and physical recreation among people with physical, sensory, learning or complex disabilities. They aim to provide equal opportunities to participate in sport and physical activity.

These activities will take place in a vibrant, lively & welcoming environment at various locations across the Scottish Borders. CURRENT PROJECTS They currently offer a Sport Referral Programme and a Grant Aid Scheme, both aimed at encouraging new participants and

developing existing athletes & sports clubs which you can access via their website. FIND OUT MORE: www.bordersdisabilitysport.co.uk

DRAKE MUSIC SCOTLAND WHAT DO THEY DO? Drake Music Scotland’s mission is to ‘transform people’s lives through the power of music.’ They focus on inclusion within the music industry, working with skilled composers and musicians with disabilities. They aim to not only to make Scotland a groundbreaking place for new music featuring these artists, but

also be an innovator of inclusive music technology internationally. WHAT’S HAPPENING? Currently there are opportunities to join group sessions, in both bands or orchestras. For individual instrument tuition there is currently a waiting list, but you can register your interest on the Drake Music Scotland website. They have a talent development partnership

for disabled composers looking for new commission opportunities and have a disabled artist network on Facebook for disabled composers and musicians across Scotland. FIND OUT MORE www.drakemusicscotland.org

THORNTON ROSE RDA WHAT DO THEY DO? Thornton Rose are a member of the Riding for the Disabled Association, with the vision of improving the lives of people with disabilities by providing people of all ages and disabilities the chance to enjoy therapeutic and recreational sport in a safe and stimulating environment.

WHAT’S HAPPENING? Each participant is matched to a specific horse, meaning waiting times can vary depending on the availability of a particular horse. The Thornton Rose Group is run and managed exclusively by volunteers so they are always looking for enthusiastic people to donate what time they can to help.

They also welcome placements for student vets, vet nurses and physiotherapists. FIND OUT MORE: www.thornton-rose-rda.org.uk

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‘YOO-HOO, I’M IN THE LOO THE NOO!’

what’s new ON THE TOILETING FRONT IN SCOTLAND?

FEW THINGS ARE QUITE AS IMPORTANT TO CHILDREN, YOUNG PEOPLE AND ADULTS THAN FEELING CONFIDENT ABOUT HOW THEIR BLADDERS AND BOWELS FUNCTION AND BEHAVE!

W

hilst bladder and bowel problems are unfortunately incredibly common amongst the general population in childhood, with up to 30% of children experiencing constipation, 4% experiencing soiling and up to 10% of children with daytime wetting, these difficulties are even more common amongst children with disabilities, hidden or visible. Continence problems can frequently result from chronic constipation and overactive bladder, often made worse by urinary tract infection; however, they are often avoidable if the underlying problems are treated properly- the earlier the

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better! Sadly, it’s not unusual for children with a disability to remain dependant on containment products, as they are sometimes assumed not to be able to master the skills necessary to become clean and dry. But most can - with the right support! Denying children with continence problems and disability the right to a good continence assessment, the best treatment, and proper support towards toilet training, is just another form of discrimination. A new, voluntary network of nurses and doctors who work with childhood bladder and bowel problems and continence issues, was formed last year in Scotland - ‘Paediatric

Continence Scotland’ (PCS). PCS has members from all 14 of Scotland’s Health Boards, from the Shetland Islands in the north, all the way down to the Borders. They aim to improve services for these children across the country, provide training and education for professionals and families, and to support each other in their clinical practice. Paediatric Continence Scotland is also working on building up


Children” which is freely accessible on the PCS website – take a look! Just search for “Paediatric Continence Scotland” and the module is right there on the home page. https://www.paediatriccontinence. scot.nhs.uk/

its website to include additional resources for both parents and professionals, including information from dieticians, occupational therapists and psychologists, amongst others, and will provide a directory of services in an interactive map. Watch this space! It’s also busy lobbying government to standardise services provided for children with continence problems across Scotland, which are very variable in the different areas at present. Scottish Government has commissioned an online learning resource, published in 2020, called “Bladder and Bowel Health in

There’s interactive content, downloadable PDF’s and specific information for health professionals, parents and educators to encourage a ‘team’ approach to helping children with continence problems. A dedicated section within the resource provides detailed information about how different forms of disability, from Autism Spectrum Disorder through to Spina Bifida, can affect continence and provides helpful strategies and tips for treatment. The Greater Glasgow and Clyde website also has a range of helpful downloadables for many aspects of child development and health, including toilet training skills.

https://www.nhsggc.org.uk/kids/ resources/ In Scotland, we are lucky to have the Kidney Kids charity, who have been so supportive in the drive to improve

the care of children with bladder and bowel problems. Because of the close links between bladder and kidney problems, they have been very active in campaigning for better services for children with continence issues and have helped to fund and equip a number of paediatric continence services across Scotland. You can download their colourful, fun booklet all about bladders and bowels from their website- watch out for that snake! https://www.kidneykids.org.uk/ snakes--bladders

Contact Paediatric Continence Scotland and its members through: Dr. Catriona Morrison, (Chair) catriona.morrison3@nhs. scot or Dr. Fiona Cameron, (Secretary) fiona.cameron@ lanarkshire.scot.nhs.uk

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FESTIVALS

are back!

THE EASTBOURNE FESTIVAL OF ACCESSIBLE SPORT (EFAS) WAS THE FIRST EVENT OF ITS KIND IN THE UK, SEEKING TO CREATE A FESTIVAL ENVIRONMENT AIMED AT PEOPLE WITH DISABILITIES AND CENTRED AROUND SPORTS

I

t took place over the August bank holiday weekend and was organised by our team at Defiant Sports, a community interest company promoting inclusion in sports for all, and Eastbourne Access Group, a group championing for disability accessibility in Eastbourne. To create an inclusive environment, EFAS had live performers, such as Bafta-nominated Delta 7 and

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neurodiversity champion Verity White, along with a fun fair and food vendor. EFAS had an amazing variety of sports providers, allowing people with all kinds of physical, mental, and learning disabilities to find something for them. This included wheelchair sports and boxing with WBC Cares UK, disability archery with Sussex Wasps, boccia and

accessible tennis with Defiant Sports, blind football with Albion in the Community, wheelchair basketball with Sussex Bears, adapted cycling with Wheels for All, and more! There were also various support organisations and charities, ranging from Millbrook Healthcare to Amaze. The free event sold out of its 500 tickets, meaning a huge amount of people living across Sussex were


exposed to a range of accessible sports, including some they may have never even heard of such as boccia. It was also a great opportunity for the organisations to network, with many of them thanking us for these new connections they have made. This means that not only have the public been exposed to how sports can be accessible, but the organisations can now collaborate and learn from one another to increase the number of inclusive sports on offer. Feedback from the event goes to show just how much of a success it was and supports our desire to make it an annual event in Eastbourne. One participant, who has cerebral palsy and autism, thanked us for the event as it allowed him to meet others with cerebral palsy, and find a new club he can join for “people like him.” Millbrook Healthcare were thrilled to network, helping multiple people with wheelchair adjustments, and called the event “eye opening and inspiring”. A local Co-Op manager noted that it has opened their eyes to accessibility and has urged them to

feedback to their team on how they can increase their disability inclusion, particularly in hiring staff with disabilities. One of the food caterers also thanked us for how welcoming the atmosphere of EFAS was, especially as it allowed their autistic son to feel confident enough to play football on the sports arena stage. Overall, EFAS made for a wonderful bank holiday event, with the sun shining and both participants and stall holders enjoying the weekend immensely. If you’d like to learn more

about the event, or be a part of EFAS 2022, please get in touch on info@ defiantsports.org.uk, or through our website www.defiantsports.org.uk. Defiant Sports are an Eastbourne based charitable organisation aimed at creating fully inclusive sport, regardless of ability or disability. Through catering for everyone’s sporting needs, asking ‘what would you like to do?’, rather than telling our players how to ‘fit’ in sporting, we hope to encourage happiness and decrease isolation.

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equipment and products to make life easier in partnership with ...in partnership with Shop online with Disabled Living for What’s the advantage? equipment and products to make life easier

The best of both worlds...

partnership with The main...in advantage of purchasing via the Disabled What’s the advantage? website, is the online and get free TheLiving main advantage of shop purchasing via the Disabled opportunity for you or your Living website, is the opportunity for you or your professional advice clients clients to speak to to speak to With over 250,000 items in stock at With over 250,000 items in stock at Occupational Therapists or Therapists Occupational competitive prices, weor are offering Continence Specialists for competitive prices, we are offering you choice from a wide range of freeContinence impartial help and Specialists for manufacturers including mobility advice, ensuring you choice from a wide range of aids, daily living products, and unnecessary purchases are help free impartial and continence suppliers together with manufacturers including mobility not made. telecare and telehealth equipment. advice, ensuring aids, daily living products, and unnecessary purchases are continence suppliers together with not made. telecare and telehealth equipment.

www.disabledliving.co.uk/online-shop Telephone: 0161 607 8200 Charity number: 224742

Over 250,000 items in stock at competitive prices

When you shop online with Disabled Living for equipment and products to make life easier you or your clients can speak to Occupational Therapists or Continence Specialists for free impartial help and advice, ensuring no unnecessary purchases are made. Telephone: 0161 607 8200

www.disabledliving.co.uk/online-shop

Large choice from a wide range of manufacturers, including Charity number: 224742

mobility aids, daily living products, and continence supplies Telecare and telehealth equipment

Why not take a look today at www.disabledliving.co.uk/online-shop Telephone: 0161 214 4590 36

Charity number: 224742


kidz

• Care Alarms & Telecare • Dementia & Elderly Care • Fall Prevention • Epilepsy Care Products

to

ADULTZ EVENTS

01536 264 869

NORTH

www.easylinkuk.co.uk www.medpage-ltd.com

LIVE!

WE’RE BACK

Medpage Limited T/A Easylink UK 3 Melbourne House Corby Gate Business Park Corby, Northants NN17 5JG UK

Wednesday 17th November 2021 ACC Liverpool NEW VENUE!

MIDDLE

Thursday 17th March 2022 Coventry Building Society Arena, Coventry

SOUTH Tuesday 17th May 2022 Farnborough International Exhibition & Conference Centre, Farnborough

WALES & WEST Thursday 7th July 2022 The International Conference Centre (ICC), Newport NEW VENUE!

SCOTLAND September 2022 Royal Highland Centre, Edinburgh BACK BY POPULAR DEMAND!

@MedPageLtd

Medpage/Easylink UK QP Ad.indd 1

21/07/2021 13:10

Helpline Live chat Free legal advice service

Information / resources Facebook support group We are here to support family and carers of seriously ill children and young adults 0808 8088 100 helpline@togetherforshortlives.org.uk www.togetherforshortlives.org.uk


Queen Alexandra College

WHEELCHAIR BASKETBALL ACADEMY

new and exciting fo!r 2021/22

DON’T MISS THE FUTURE ISSUES OF KIDZ TO ADULTZ MAGAZINE...

Photograph by David Dunbar Purple Swan Photography

Queen Alexandra College (QAC) are working in collaboration with University of Worcester and The Albion Foundation to deliver a unique and ground breaking bespoke Wheelchair Basketball sport performance programme.

As well as being distributed at each of the Kidz to Adultz shows, you’ll find each new issue online, so you can always keep up to date with what’s new and read all the interesting articles.

The programme is specifically designed for ambitious young sports people aged 16-24 years who use a manual wheelchair and are eligible under the International Wheelchair Basketball Association (IWBF) classification criteria.

For more details please contact: 0121 428 5050 or info@qac.ac.uk

Just visit...

www.qac.ac.uk

www.kidzexhibitions.co.uk

QAC: Registered Charity No. 1065794 Registered in England No. 3387540

Bladder & Bowel UK National Confidential Helpline Information and signposting to anyone affected by a bladder or bowel problem. Individuals, their families, carers or clinicians may contact our helpline.

Bladder & Bowel UK Just Can't Wait Card Please complete an online request form via the link https://www.bbuk.org.uk/just-cant-wait-cards/ To obtain your free card - please send a stamped address envelope to: Bladder & Bowel UK, 10 Priestley Road, Worsley, Manchester, M28 2LY www.bbuk.org.uk bbuk@disabledliving.co.uk

0161 214 4591

Bladder & Bowel UK, Part of Disabled Living, Registered Charity No: 224742

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Donate to Disabled Living with AmazonSmile

CLICK HERE

When you purchase items on AmazonSmile, a small donation will be given to Disabled Living at no extra cost to you!

To get started, follow the steps below: Log in to your Amazon account

Search Disabled Living in the ‘Pick your own charity’ bar Select Disabled Living You should receive an email asking you to confirm this Get ready to shop!

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Disabled

LIVING

THIS IS WHO WE ARE AND WHAT WE DO…. DISABLED LIVING

A charity which provides impartial information and advice about products, equipment (assistive technology) and services for disabled children, adults, older people, carers and the professionals who support them. We have a range of services which you can access via our helpline, through the website or at our Kidz to Adultz exhibitions. www.disabledliving.co.uk

EQUIPZ

The team comprises occupational therapists, trusted assessors, moving and handling specialists, physiotherapists, nurses and continence specialists. We respond to enquiries via our helpline and website. Some people opt to visit the Disabled Living Centre based in Manchester for a free equipment assessment. Helpline: 0161 214 4590

BLADDER & BOWEL UK

The team provide information and advice for children, young people and adults with bladder and bowel problems. We provide a confidential helpline managed by a team of specialist nurses and knowledgeable information staff. In addition, the website offers a wide range of downloadable free resources. Helpline: 0161 214 4591 www.bbuk.org.uk

KIDZ TO ADULTZ EXHIBITIONS

We organise the largest FREE UK exhibitions totally dedicated to disabled children, young adults, their families, carers and the professionals who support them, with over 100 exhibitors at each event. We currently deliver five events nationally in Coventry, Farnborough, Newport, Edinburgh and Liverpool. www.kidzexhibitions.co.uk

TRAINING

We run a comprehensive training programme for professionals and carers. Most of our courses are accredited by Open Awards and others provide CPD opportunities. Our training courses can be ‘tailor made’ to suit your organisations requirements and can be delivered throughout the UK. www.disabledliving.co.uk/training