KtoA Magazine - The Summer issue: Adventure

Kidz to Adultz

Knowledge to action

Issue 22

The Summer issue: Adventure

Featuring:

• Travelling with guide dogs

• Making Britain’

• #RightsOnFlights for passengers

• Arts festival prioritises access for all

• Adaptive clothing

• Charity focus: Climbing Out

• What’s on?

Package one: £5995

Padded Mascot Cot Bed

• 60cm high doors on one side

• W14 mattress – 90 x 170cm

• KR3 – height adjustable and profiling platform

• Full height padding in Chieftain Koala with 2 clear soft windows (door 1 and door 4)

Package two: £7995

Padded Mascot Cot Bed

• 98cm high doors on one side

• W14 mattress – 90 x 200cm

• KR3 – height adjustable and profiling platform

• Full height padding in Chieftain Dune with 2 clear soft windows (door 1 and door 4)

Welcome! to our latest issue

Summer is a time for adventure and heading off on holiday so pack your bags, but don’t forget to bring our new magazine!

Knowledge to Action is at the heart of the KtoA publication and is designed with our community in mind including families, carers and healthcare professionals. With each issue, we want our audience to discover inspirational stories and real-life experiences, access advice about current topics and find exciting cultural activities taking place.

In this edition, we hear about a little boy who has climbed some big mountains for charity, provide an update on the #RightsOnFlights campaign, interview the designer of a new adaptive children’s clothing collection, and much more. Plus, our what’s on guide is full of everything from accessible theatre shows to a summer of para-sports events.

Making Britain’s beaches accessible with specialist wheelchairs

Who gets to enjoy the beach? For many wheelchair users, the answer might be ‘not me’.

Thankfully, the issue is being addressed by a range of local organisations operating at beaches across the UK. Many are working to improve accessibility and offer specialist equipment such as adapted beach huts and, increasingly, beach wheelchairs.

How do I find a beach wheelchair?

• Contact the local tourist board of the area

• Visit www.disability-grants.org/beachwheelchairs-for-hire.html for an interactive map of beach wheelchair locations

Here are some examples of regional wheelchair hire...

Beach Within Reach, Thanet

Available from 10am to 4pm every day from mid-May to early September, and at other times throughout the year by prior arrangement. Hire is free but donations are welcome. Locations include Minnis Bay, West Bay, St Mildred’s Bay, Westbrook Bay, Margate Main Sands and Viking Bay in Broadstairs.

www.beachwithinreach.org.uk

beachhuts@yourleisure.uk.com

03333 660661

Fleetwood Beach Wheelchairs

Cornwall Mobility received EU funding for the production of their sandchair, which is available to hire for free at 17 locations including beachside cafes, shops and local offices. Available around the coast, from Bude to Looe.

www.cornwallmobility.co.uk

Info@cornwallmobility.co.uk

01872 254 920

South East

South West

North West

Fleetwood Beach Wheelchairs

Local residents run this scheme to make the beach at Fleetwood accessible for more people. There are ten chairs available, along with a MoLift Mover 205 hoist (you will need to bring a 4-point sling bar). Chairs can be booked in advance for times between 10am and 4pm from Monday 29th March until further notice.

www.fleetwoodbeachwheelchairs.co.uk fleetwoodbeachwheelchairs@outlook.com 03000 111 003

North East

Beach Access North East

A volunteer-run organisation providing free loan of specialised equipment at beaches across the North East. Currently operating at several beaches throughout the North East: Bamburgh, Beadnell, Blyth, Newbiggin, Newton-by-the-Sea, South Shields, Whitley Bay and Tynemouth.

www.beachaccessnortheast.org

info@beachaccessnortheast.org

0300 999 4444

East Anglia

North Norfolk District Council

After their first beach wheelchair at Cromer beach was quickly booked up last year, North Norfolk District Council has invested in a second wheelchair for Sheringham beach. Both wheelchairs are now available to hire for free. They can be booked 11am - 4pm, and 11am - 3pm on Fridays.

www.north-norfolk.gov.uk/tasks/yourcommunity/book-a-beach-wheelchair beachwheelchair@north-norfolk.gov.uk

Scotland

Beach Wheelchairs

Beach Wheelchairs is a small Scottish charity, established in 2015. Their mission is to get people back on the sand enjoying Scotland’s beautiful beaches. Available at North Berwick, East Lothian and Portobello, Edinburgh.

www.beachwheelchairs.org

info@beachwheelchairs.org

North Berwick - 0300 111 2112 to book; Portobello - 0300 666 0990 to book; Seton Sands - 01875 813333 to book

Wales

Pembrokeshire Coast

Specialist wheelchairs are available across the Pembrokeshire coast, provided by the National Park Authority. Available at 11 locations, including Castle Beach, South Beach and North Beach in Tenby.

www.pembrokeshirecoast.wales/things-todo/access-for-all/beach-wheelchairs/ info@pembrokeshirecoast.org.uk 01646 624800

Channel Islands

Jersey Beachability

BeachAbility is a charity providing specially designed manual, ballooned wheelchairs for use on the beach and other rough terrain. Available in locations of La Braye, St Brelade, Gunsite, Bel Royal, West Park, La Mare, Long Beach, Gorey.

www.beachability.org

beachability@hotmail.co.uk 07797 935088

What’s on?

Events

Blue Badge Bunch: ReRamped

Edinburgh Fringe Festival

2nd-15th, 17th-28th August

An interactive game show where each round represents a different disability, giving kids and grown-ups the chance to learn about autism, cerebral palsy and more.

Hosted by disabled stand-up comedian Benny Shakes, the show has been praised for its innovation, educational value, and silliness!

Access Adventures Kids Activity Days

Dates throughout August / 10th, 19th, 30th August, 10am-3pm

Learn how to water ski, try paddle sports, and have fun on inflatable rides using adapted equipment. The activity days help to build confidence and offers the opportunity to meet similar kids and young people.

Awareness Days

August 06-12:

International Assistance Dog Week

September 23:

International Day of Sign languages

September 25-01:

National inclusion week

ArtWorks Together Exhibition

Wentworth Woodhouse, South Yorkshire

30th August – 3rd September

Admire multi-media artwork by artists with learning disabilities and autism from around the world at the ArtWorks Together Exhibition. Alongside the exhibition they are also running family activities and workshops by local artists to get your creative juices flowing.

Manage your child’s care, seamlessly

Helping families & professionals manage, coordinate and navigate the care of children with additional needs.

Sign up for free, early access at www.hibi.health

Hibi’s app combines digital scalability with expert support, providing:

Smart care management tools

Personalised guidance

Books

Why Johnny Doesn’t Flap

by Clay Morton

This picture book is told from the perspective of an autistic boy who can’t understand why his neurotypical friend Johnny is a bit, well, different! Johnny is never quite on time, he speaks in the strangest idioms, and he can’t possibly stick to a routine. The autistic narrator’s bafflement at his neurotypical friend’s quirks shows that ‘normal’ is simply a matter of perspective.

A Kind of Spark

by Elle McNicoll

Winner of the Blue Peter Prize for Best Story, this book tells the story of 11-year-old autistic girl Addie as she campaigns for a memorial of the witch trials that took place in her Scottish hometown. Addie knows there’s more to the story of these ‘witches’, just like there is more to hers. Can Addie challenge how the people in her town see her, and her autism, and make her voice heard?

Podcasts Disability Visibility Project

by Alice Wong

Ep 60 – Travel

Disability rights activist Alice Wong chats to Srin Madipalli, a Product Manager at Airbnb about how to make travel easier for people with disabilities and his own experiences as a disabled traveller. The podcast has 100 episodes with guests from the world of acting, fashion, politics and more.

Access All: Disability News and Mental Health

Ep 54 – Life’s an accessible beach

Nikki Fox and Emma Tracey discuss Greece’s plan to make nearly 300 of their beaches

The Silence Between Us by

Alison Gervais

Deaf teen Maya moves across the country and must attend a hearing school for the first time. As if that wasn’t hard enough, she also has to adjust to the hearing culture which she finds frustrating, but also surprising when some classmates take time to learn ASL. As Maya looks past graduation and focuses on her future dreams, nothing, not even an unexpected romance, will derail her pursuits.

accessible using a device called the Seatrac. This remote-operated ramp with a sliding chair can move disabled beachgoers into the water. Other episodes include interviews with Paralympian Ellie Simmonds and singer Lewis Capaldi.

You’re Dead to Me

Disability in the Ancient World Greg Jenner is joined by comedian Rosie Jones and historian Dr Jane Draycott to discuss stories of disability from over a thousand years of history, including people with disabilities excelling on the battlefield and others with very well-dressed guide dogs.

Theatre

Hey Duggee: The Live Theatre Show

Storyhouse Theatre, Chester

Friday 18 August, 1pm

Be part of the hit CBeebies show and join Duggee and the Squirrels in this new interactive production bursting with music and puppets. This relaxed performance will have lower sound levels, the house lights will be kept up, and everyone is welcome to walk around and come in and out.

Harry Potter and the Cursed Child

Palace Theatre, London

Saturday 9 September, part one 2pm & part two 7pm

19 years after Harry, Ron, and Hermione saved the wizarding world, they’re back for an extraordinary new adventure. This performance includes advance audio notes, a ‘Touch Tour’, and audio descriptions delivered by VocalEyes.

• Recommend by Healthcare Professionals

•

• At Respite (when required)

• Fits to all domestic beds

•

•

• Lightweight – take anywhere

• Machine washable

• Fits to 200x90cm single bed

•

•

The Cloud Cuddle is a multi award winning - CE Marked - class 1 medical device. It’s tough, robust and durable and in just 5 minutes it can be fitted to any single bed to create a safe and calming place for a child to sleep and relax.

Huge cost saving compared to care cots & soft surround bed options. Home assessments throughout the UK are available.

Wales & West

21st September 2023

9:30am - 4:30pm

For children and young people with disabilities and additional needs, and the people who support them.

bright pink wheelchair. Since then, they have created dolls with behind-the-ear hearing aids, prosthetic legs, and have introduced Barbie Dreamhouse.

They have also just revealed a Barbie with Down’s syndrome. Sofia Sanchez, an activist, model and actor living with Down’s syndrome rocked the red carpet at the film’s premiere wearing a dress inspired by the new doll!

Biscuitland (Signed)

Jess Thom’s Tourettes Syndrome and her tics means her life is full of biscuits, cats and Alan Hansen. Worlds collide at home and work as a visit from a social worker threatens to ruin her day. Biscuitland is an authentic day in the life of someone whose unusual neurology has ideas of its own - funny, surprising, and unfiltered in every way.

Watch on Channel 4.

Rose Ayling-Ellis: Signs for Change

In this groundbreaking documentary, Rose Ayling-Ellis explores her deaf identity, attitudes towards the deaf community, and highlights the beauty of sign language. Filmed over a year, we see Rose performing on stage in Shakespeare’s As You Like It, acting in EastEnders, and winning Strictly Come

Watch on BBC iPlayer.

Sport

European Para Championships

Rotterdam, Netherlands

8th – 20th August

The very first edition of the European Para Championships will bring together 1,500 athletes from 45 countries. 10 European Championship sport events will take place, including Para taekwondo, Para judo, Wheelchair tennis, Boccia and more.

A day pass ticket is €7.50 and free for under 4s.

IBSA World Games

Birmingham

18th – 27th August

The International Blind Sports Federation (IBSA) World Games is the largest international event for athletes with visual impairment, with more than 1250 competitors from 70 nations. It hosts both paralympic and non-paralympic sports, including Chess, Cricket, Goalball and Bowling.

Tickets start from £5.50 with carers attending for free.

Invictus Games

Dusseldorf, Germany

9th – 16th September

Through the power of sport, the Invictus Games supports the recovery and rehabilitation of servicemen and women. This year sees Table Tennis join Athletics, Power lifting, Wheelchair rugby and more in a packed programme of adaptive sports.

Tickets to the sports events are free and you can book tickets for the opening and closing ceremonies.

Q&A

with Justine Quinn

The KtoA Magazine team met Justine at our Kidz to Adultz South Exhibition in May 2023. We spoke to her about her journey, raising children with additional needs, and the power of perseverance.

Hi Justine. What do our readers need to know about you?

Hi, I am Justine Quinn. I’m from Cape Town, South Africa and I live with my husband, Aidan. I am mum to four children: our 14-yearold special needs twins Isabella and Cillian, and another set of twins Riordan and Lorcan who are 12 years old.

My friends and family would describe me as talkative, spontaneous, passionate and a fixer – I won’t accept ‘no’. I enjoy running, sleeping, and helping those in need. Because of my own experience, I always want to help and be a support to parents who have premature babies and lose their child.

Can you tell us about your experience raising children with additional needs?

I grew up in Cape Town and lived in London for 10 years. It was while working for Ernst & Young in London that I met my Irish husband, Aidan. We moved back to Cape Town as my mum became ill and got married in March 2008.

We had triplets Isabella, Cillian and Ciaran in September 2008 and they were born premature at 26 weeks. We were so naïve, and had no idea about anything related to brain bleeds, cerebral palsy, ventilators, congenital nystagmus, necrosis of the intestine, stoma bags – and the list goes on. Sadly, our

beautiful son Ciaran passed away after 3 days. Life at that time was about survival and trying to learn about our new journey while being intensely sleep deprived.

The now twins stayed in the hospital under specialised care for five months. Life was sheltered when they came home, and I was overwhelmed with fear and anxiety, so we dedicated ourselves to learning about therapies like floatation, massage, occupational therapy, crossing the midline, and more. Finances were always a worry, and we don’t get state help in South Africa if you’re in work. I gave up my career and devoted myself completely to the twins.

Two years later, I had a healthy pregnancy and the twin boys Riordan and Lorcan were born at 36 weeks. Riordan was in the neonatal intensive care unit for 3 days, but it was such a different experience. We now had two double strollers and it seemed like we had quadruplets at times as Isabella and Cillian have severe developmental delay.

How are your children doing now?

Riordan and Lorcan are heading to High School. They are compassionate, helpful and love their sister and brother protectively and are proud to be their siblings. Cillian and Isabella go to school. Cillian is non-verbal and has quadriplegia. He has surpassed everything and still slowly but surely progressing. Isabella is kind, gentle, and very funny. She was diagnosed as being on the

autistic spectrum at about eight years old, and she has never stopped progressing. We were told our children wouldn’t achieve anything. Told not to get your hopes up, they won’t see, hear, or talk. We will never stop believing in all our children, what they can achieve, and we will do whatever it takes to help them realise their full potential and dreams.

What lessons have you learnt?

Looking back, Aidan and I have been through it. Communication is key. We’ve learned to always talk to one another, that not everything is going to go your way. Marriage is about compromise, love, and patience. But together you are shaping and supporting the next generation.

I have been to the bottom of many sorrows with loss. I’ve also survived breast cancer and a double mastectomy and chemotherapy for a year. But I have never given up.

Why? Because my children are fighters, they are resilient and motivate me and Aidan. What would I change? Nothing!

“We will never stop believing in all our children.”

A leading arts festival prioritising access for all

Since its inception 27 years ago, Greenwich+Docklands International Festival (GDIF) has been committed to breaking new ground in outdoor performance, pioneering new access and audience engagement approaches, and programming Deaf and Disabled artists. Access Producer Kat Gill gives us the low-down on London’s leading free outdoor arts and performance festival, and how the event prioritises access for everyone.

Greenwich+Docklands International Festival takes place from 25 August – 10 September across sites in South-East London, The Royal Borough of Greenwich and the City of London.

Over the years, this award-winning festival has built solid relationships and trust with Disabled audiences. Partnered with live events

charter Attitude is Everything since 2003, this year the organisation became the first UK festival to be awarded Platinum status for its access provision. At GDIF access is everyone’s

priority and it works with artists and production teams to create bespoke access for each production and site, recognising that access is always a continuing journey, not a destination.

About accessibility and inclusivity at GDIF

GDIF’s entire staff and volunteers receive Disability Equality and Communication Access training and all of the festival sites are relaxed, wheelchair accessible, welcome Assistance Dogs, have accessible toilets and viewing areas.

There is bespoke accessibility for each show. For example, shows with speech will have BSL-interpreted or captioned performances. Many events will have pre-show touch and familiarisation tours as well as downloadable audio introductions, and selected ones are live audio described via headset. Easy-read visual stories can be downloaded and printed copies are on site.

What’s on this year… there will be over 40 shows in various locations. Larger festival sites at Greenwich Fair and Dancing City have an access welcome point, covered quiet area, Changing Places facility with a hoist and guided access routes. Here are some highlights: Greenwich Fair is a family-friendly day of street arts, performance, games and circus for all ages in Greenwich town centre and park on the 26th August:

• Echoes Within The Earth: dance journey inspired by nature created by learningDisabled choreographer Chris Pavia.

• The Air Between Us: spectacular aerial performance performed by Disabled artist and wheelchair user Rodney Bell and dancer/choreographer Chloe Loftus.

• Birdie: accessible and hopeful story about climate change performed by professional actors with learning Disabilities.

Other Greenwich Fair shows include hip hop choreography with contemporary circus, interactive robotic animals, roller skating battles and disability protest road signs created by Disabled artist Caroline Cardus.

Ancient Futures is an intergalactic Afrofuturist party that blends circus, music and dance. Inspired by West African folklore in Thamesmead.

“We recognise that access is always a continuing journey, not a destination.”

Cygnus a poetic light installation animatronic swans perform a mesmerising water ballet accompanied by an ethereal soundscape on the Royal Victoria Dock.

Dancing City is GDIF’s annual weekend of outdoor dance productions by leading international and UK companies across the Canary Wharf estate on 9th and 10th of September:

• Bouncing Narratives: performed on a trampoline installed on a shipping container.

• ARCADE: joyful interactive performance with short dance games to connect people of all ages.

• Sleepwalker: challenges perceptions of movement, presented by The Royal Ballet and performed by Disabled dancer Joe Powell-Main alongside Isabel Lubach.

show people to the sites. For further information go to: https://festival.org/gdif-2023/ https://festival.org/gdif/access/ Email access@festival.org

Climbing Out is changing lives in the outdoors

Kelda Wood MBE set up the charity Climbing Out after her own life-changing injury. The charity works with adults, aged 18 and over, who have had their lives derailed by trauma – whether that be an injury, illness, PTSD, or anxiety linked to a traumatic event.

The fully funded five-day mental resilience programmes combine outdoor activities and personal development coaching to empower people to take control of their mindset, actions and behaviour. Their residential programmes help people who are ready to take their lives forward, helping to make sense of why they think and feel the way they do.

The programmes take place in North Wales, the Peak District, Shropshire and the Lake

District. The team of instructors provide a full week of challenging outdoor activities to stretch comfort zones, personal development coaching to teach mental resilience tools, and fun evening social events to encourage the group to form friendships that will offer support after the programme has ended. The outdoor activities include climbing, kayaking, hill walking, abseiling, caving and cold water swimming. All the activities are

Charity Focus

adapted to meet the needs and capabilities of the individual participants. By taking on these activities participants are pushed outside of their comfort zone, and in doing so, learn they are capable of so much more than they realised.

“I’ve always been a big believer in healing in the outdoors through physical activity,” said founder Kelda Wood. “It’s important to get away from the pressures of modern life, breathe in the fresh air, and get your body moving – however it is able to move. Through outdoor adventures, we can enjoy an enormous sense of achievement and it’s a great setting to connect with others, away from whatever is in your day-to-day life that might be holding you back.”

Personal development sessions are run throughout the week to give participants the tools to accept the past, move forwards in life and deal with challenges they may face in the future.

The charity has worked with many participants who have suffered life-changing injuries or illnesses. They only work with people aged 18 or over and participants must be independently mobile, self-reliant and selfmedicating.

So far this year they have run four programmes across the UK. Here are some quotes from recent trips:

“Being shown that there is a way out and how to achieve it has turned my life around. It’s given me the self-belief, understanding, knowledge and power to move forward and find the light at the end of my tunnel and finally climb out!” – Michael

“I have smiled, laughed, felt more confident and believed in myself more over these last 5 days than I have in the last 5 years.” – Sophie “For many years I’ve been a shadow of who I want to be. I’ve felt like I’ve been hanging onto life by the tips of my fingers on the verge of dropping off. This week I’ve learnt that there is hope. I can still have fun and be healthy and happy. It’s early days and this is a lifelong journey, but Climbing Out has given me optimism that I can survive.” – Ollie

Participants who have completed a core programme and who have shown a commitment to taking responsibility for their own development may then be invited to get involved with expeditions to continue their personal development. This year a group will embark on a wilderness canoeing expedition in Sweden, tackling a remote five day journey on the Harkan river. In 2024 a team will head to the Alps to attempt the Italian Haute route, which includes climbing at least six 4,000m peaks.

For more information about Climbing Out and how to be referred, visit climbingout.org.uk

#RightsOnFlights for passengers

Whether it’s assistance not being properly provided, being left alone on aircraft long after landing, or having essential mobility equipment damaged or broken, each Disabled traveller has their own story to tell.

Earlier this year, Disability Rights UK encouraged Disabled people and their allies to join them by writing to local MPs to ask them to support the campaign. Disability advocate Sophie Morgan, travel rights campaigner and Disabled Living trustee Josh Wintersgill, politician Marion Fellows and Disability Rights UK’s Anna Morell delivered the letter signed by all the supportive MPs to 10 Downing Street in March.

The Civil Aviation Authority is ranking the performance of airlines based on their service for Disabled and less mobile passengers, from booking flight tickets and assistance at the

airport, through to their onboard experience and complaints handling.

It’s time for change. Disabled travellers deserve the same rights as non-Disabled travellers. They deserve to travel with the expectation that they, and their equipment, will be treated with the respect and dignity they deserve.

If you use Twitter or other social media, please share details of the campaign with the hashtag #RightsOnFlights

The Government has announced that it will legislate to make airlines more accountable when dealing with Disabled passengers and to remove the cap on compensation for wheelchairs or mobility aids damaged on domestic UK flights.

The news comes after #RightsOnFlights campaign work by Disabled Rights UK, Sophie Morgan, Josh Wintersgill, and Marion Fellows MP which saw a petition presented to Number 10 demanding change.

The campaign has highlighted the barriers Disabled people, especially wheelchair and mobility aid users face when using air travel, after Sophie’s wheelchair and mobility aids were damaged multiple times on long haul journeys.

The Government undertook a consultation with airlines, campaign groups and individuals in the first quarter of 2022.

In its response, it said: “We will work with industry to move to a standard of voluntarily waiving the cap for compensation on both domestic and international flights. We will also continue to explore with the CAA, industry and consumer groups other options to improve accessibility and, thereby, increase the confidence of passengers. Measures include those suggested in consultation responses including:

• better information provision for disabled passengers and those with reduced mobility.

• improving accessibility training for staff assisting disabled passengers and those with reduced mobility.

• more broadly, continuing to work with stakeholders to ensure we can engage directly with passengers with personal experience and seek their views on further options for improvement.

“If damage or loss does occur, it is obvious that the disruption and distress caused can be significant. We want passengers to receive sufficient compensation, appropriate to the value of the item and damage caused, and in good time. We will work with industry to encourage voluntary uptake of such waivers, and public commitment to fair and prompt

compensation, for both domestic and international flights. We will legislate when parliamentary time allows to remove the cap for UK domestic flights.”

“Government is committed to ensuring that the aviation sector is putting passengers first. While most operators already do the right thing and meet their obligations to consumers, these reforms will ensure that, where behaviour falls short, consumers have the protections they need and the CAA has sufficient enforcement powers to effectively uphold consumer rights.”

DR UK’s Media and Communications Manager, Anna Morell said: “This is good news, and has been a long time coming. Airlines now need to act swiftly to implement the gold standard practices outlined in the consultation and Government needs to ensure that it does indeed make time to ensure that new legislation is passed.”

“Airlines and Parliamentarians also need to take note that access for Disabled people goes beyond wheelchair use. For example, many airlines during the pandemic withdrew free oxygen canisters for people with respiratory conditions who are forbidden from using their NHS equipment while travelling in the air. Airlines need to realise that such measures are not nice to haves, they are necessities for Disabled people to have parity of access to air travel.”

“We will be watching to ensure that the pledges made today become action to enable parity for Disabled air travel passengers.”

After learning about Sir Edmund Hilary at school, Oscar decided he wanted to be the youngest person ever to climb Mount Everest. To help train for such an ambitious expedition, he decided to climb the equivalent of Mount Everest (8,849 metres) across 12 mountains. Taking on this challenge made Oscar want to support those “facing much harder challenges in their lives” and inspired him raise money for “poorly children to go on holiday”. In doing so, he raised £35,000 for Derian House, who work to support families during the end of a child’s life.

His journey included the highest mountain in Wales, Snowdon (954m) and the highest

mountain in England, Scarfell Pike (955m). But he saved the toughest of them all for his final climb. Towering at 1,345 metres tall, Ben Nevis is the largest mountain in the UK and is a tricky task for even the most seasoned hiker.

Oscar made it to the top on 29th May 2023, the same day as the 70th anniversary of the first successful ascent of Mount Everest by Sir Hilary. Reaching the summit and smashing his fundraising target called for celebrations with balloons and handmade rosettes.

His family and friends joined him to climb in all conditions, from sunshine and showers to snow and ice. Oscar’s mum Kim said:

Six-year-old Oscar Burrow climbs the equivalent of Mount Everest to support services of Derian House Children’s Hospice.

“We’re immensely proud of Oscar and what he’s achieved. Giving us our time for this challenge is nothing in comparison to the help that families get from Derian House and knowing that the money we raise will go to help them create precious memories together on holiday makes it all worthwhile.”

The £30,000 will allow families to stay at Derian House’s holiday lodges for free, on what could be their last holiday together. The additional money raised will go towards helping to run the hospice’s hydrotherapy

About the holiday lodges

In March, Oscar was invited to re-open one of the lodges at Ribby Hall Holiday Village after it was refurbished thanks to fundraising efforts.

At the ribbon cutting Oscar said: “I really liked looking around the lodges and I’m glad that so many families will be able to have happy times there.”

Derian House have four lodges in the North West which they offer to families as a place for them to make precious memories together.

The lodges all have an electric medical bed and hoist, a fully adapted wet room with a shower chair, and are wheelchair friendly.

It costs £1000 to send a family on a free holiday for a week, which means Oscar’s

amazing fundraising will pay for an entire season of summer holidays.

Karen Edwards, Chief Executive at Derian House said:

“Our holiday lodges are an incredible facility that enable our families to take a break, have fun, and make memories. It is only down to the generosity of our incredible supporters –like Oscar and his family – that we are able to do this and we’re so grateful.”

About Derian House Children’s Hospice

Derian House provides respite and end-oflife care for more than 400 children and their families from across Lancashire and South Cumbria. They help them to make happy memories together in a fun and dignified environment. All their services are free for the families, but it costs £6 million to run every year. The charity of supporters like Oscar means they can continue their vital work.

To find out more about Derian House: www.derianhouse.co.uk

To make a donation: www.justgiving.com/ fundraising/oscar-burrow1

Life-changing injury leads to new career in adaptive clothing for mum of three

After suffering injuries in an attack while working as a police officer, Helen Hignett has been left with serious long term effects. Her own experiences told her that a lot of specialist adaptive clothing could be improved –and she decided to do something about it for children and young people with disabilities and additional needs. Here she shares her story.

I am a 41-year-old mum of three who has taken the empowering decision to launch a new collection of sensory and adaptive children’s clothing following a life-changing injury.

In 2010 I was serving as a police officer for Greater Manchester Police. It was just another morning when I woke up and put my uniform on ready for another shift, as I had done hundreds of times before. However, I

didn’t realise at the time that this would be a shift that would change my life. Later that day, I was assaulted during the execution of my duties. The handcuffed attacker struck me across the face and head multiple times causing the back of my head to hit the police van when I fell to the floor injured and bleeding. Sadly, the trauma sustained from the head injury left me with chronic head and face pain that I live with daily and led to a range of debilitating conditions – including PTSD, fibromyalgia and hemiplegic migraine disorder, with paralysis, blackouts and seizures.

The person who assaulted me was suffering from a mental health condition at the time of the assault. They weren’t responsible for their actions as they were suffering from a severe mental health condition. Now, I just take every day as it comes and try to live a life helping others. I was later granted ill health retirement from the force - on Christmas Eve of 2016. Seven years later, I still don’t know when something will trigger an hemiplegic migraine episode, which starts with visual aura and

slurred speech and causes sudden paralysis on the right side of my body. These can be minor and last for minutes, or severe and last for days, leaving me bed ridden. It is a condition that is often mistaken as a stroke or epilepsy due to identical symptoms. On one particular occasion I was home with two of my daughters. Mia, aged eight, was downstairs doing her homework and Ava, one, was upstairs in my bedroom with me when I felt the start of an oncoming episode. As I walked towards my bed I blacked out, collapsed and became unconscious whilst having a seizure. My daughter Mia heard a loud bang and came upstairs to find me on the floor. Mia rang 999 and followed their instructions to clear my airways and place me in the recovery position. She saved my life. She subsequently received a Pride of Britain Award for the ‘Child of Courage’ category in 2021 and a rare Blue Peter Gold badge. To say I’m proud of her is an understatement.

Despite these challenges, I have continued to strive for self-improvement – returning to higher education, earning a degree and Masters, and becoming a three-time Amazon best-selling author.

I have now turned my attention to the world of sensory and adaptive clothing design,

where I hope to have a positive impact. I am so grateful to my husband and children for helping me with dressing when needed, but a few thoughtful changes to the way clothes are designed could make life easier for us all. I knew I wanted to launch a clothing collection, but it’s my niece Lilly and her challenges that have made me focus my first ever range on babies and young people. I want to help create a world where children like Lilly, who is partially blind and has Autism and Sensory Processing Disorder, can experience clothes as an enabler rather than a barrier.

My mission is to help parents and carers to dress children who have physical limitations with more ease and less pain. A lot of the clothes I have seen on the market for children with additional needs prioritise functionality over fashion. The closures are very visible, and there tends to be limited fabric options. I was determined, therefore, that our adaptative features would be concealed, and that the prints would be vibrant and contemporary.

The debut collection, from Adaptive Clothing UK, consists of everyday basics such as t-shirts, joggers and leggings, as well as sunsafe swimsuits, vests and onesies and school uniform. It is designed for babies and children aged zero to 18.

All of our labels are printed on the fabric, and we have consciously used flat stitching to minimise discomfort and any sensory triggers. We have added poppers in strategic locations to make dressing and changing faster, reducing discomfort and stress for everyone involved. I work closely with those who know best – parents, professionals and children – to develop the range, and I use the knowledge I’ve gained through my own personal experience.

Our products have recently been described as ‘genius’, and an added bonus is that these clothes are inclusive for the whole family and not restricted to children with physical limitations, so any child can benefit from the ease of access. Our swimsuits range also makes changing a nappy so much easier.

Adaptive Clothing UK has recently won ‘Best adaptive and sensory brand UK 2023’ in the LUX Life awards, and has been shortlisted into the finals of the Enterprise Vision Awards (EVA Awards) for inspirational female, as well as being made a finalist of the She Inspires awards in the SHEro category. I have been incredibly humbled that people thought me and my journey worthy enough to nominate me for such awards. I have partnered with the incredible charity Just 4 Children, and donate a percentage of our profits – another way to make a difference.

www.adaptiveclothing.uk

Manufacturing and Service Delivery Challenges

Following on from the ongoing effects of BREXIT, almost all suppliers of Medical Devices have encountered unprecedented significant increases in Product Cer�fica�on, Manufacturing, Distribu�on Process Costs, and changes to Device Classifica�on for UKCA marking by the MHRA.

Our patented device for detec�ng movements created during an Epilep�c Seizure from a sleeping person was seriously affected by the factors described above and par�cularly by specified Microprocessor component discon�nua�on, unavailability of alterna�ves and limited permissible design changes to a previously registered and CE marked Medical Device.

This prolonged disrup�on presented technical and financial challenges leading to lengthy delays in our ability to process and deliver orders in a �mely manner. We can only offer our sincere apologies to

MP5-UT High Sensitivity Irregular Movement Monitor

our customers who have waited so pa�ently and extend a big thank you for staying with us.

I have heard of manufacturers complaining about bureaucracy and “Red Tape” hindering their business. Rules and regula�ons exist for a very good reason, they are there to protect the consumer and to ensure a device or service is of consistent quality, performance, and competently delivered.

Medpage are proud to confirm that our devices are registered with the MHRA as a recorded Medical Device and are appropriately UKCA marked.

Our devices are back in produc�on in the UK and we are working relentlessly to catch up with with the backlog of orders.

Finally, some words of assurance. Due to the increased produc�on and manufacturing costs encountered throughout this process, it was necessary to make a modest price increase, less than 10% in fact. We will honour the original price of all previously received orders.

Once again, a very big thank you for your pa�ence.

£187.00 + VAT

• Under-mattress sensor detects even minute movements including shaking, twitching, and muscular spasms.

• Movement detection notifications to digital carer radio pager with 400M operating range.

• Suitable for babies-adults, sleeping in a cot, single or double bed.

• Adjustable sensitivity and alarm delay.

Epilepsy Care

Tanya is a guide dog owner and has lived on the Isle of Man for over 40 years. Tanya was partnered with her current guide dog Delsie last summer. We caught up with her recently to find out how it is going now that she has started travelling with Delsie.

There are approximately 4,000 guide dog owners in the UK. Guide dogs help their owners go about their activities safely and with confidence, and can also accompany their owners during travel further afield.

Tanya has lots of experience flying on planes and using the boats from the Isle of Man to mainland UK. Tanya speaks positively about her travel experience and says she has always received excellent service when travelling. When Tanya is booking her travel, she books her ticket as normal online and then telephones the airline or travel provider to let them know she will require special assistance in the airport or ferry port.

As with all more complex journeys, you should first consider if it is appropriate to undertake

Tanya’s top tips for flying or travelling by boat:

“Have all your dog’s information to hand when booking your travel and when you are travelling as well. When you call to book your assistance, you will need to declare your dog’s weight, breed and recognised assistance reference number.”

“Get organised with your dog’s packing! It is a good idea to weigh and pack individual portions of food for your dog and a dog bowl with water to carry in the airports or ports. Be prepared for delays that happen frequently, so it is always good to have extra food on hand for your dog.”

“If it is the first time your guide dog is travelling, be prepared to provide your dog with some comfort and reassurance, especially if they are finding the new experience a little strange. Having their favourite toy on hand in your carry-on bag will be beneficial for your dog. Booking your assistance promptly is important as the airline will keep the seat next to you free so your dog can lay down next to you.”

the journey with your dog. If you are not sure, you should contact Guide Dogs Guide Line on 0800 7811444 (open Monday to Friday between 9am and 5pm) or the assistance dog organisation who trained your dog for advice. For more information visit: https://www.guidedogs.org.uk/gettingsupport/information-and-advice/travellingwith-your-assistance-dog/

“Having their favourite toy on hand in your carryon bag will be beneficial for your dog.”

Disabled Living

Who we are & 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 | www.disabledliving.co.uk/equipment

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

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 Manchester. 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