ISSUE 18 / JULY 2022
IN THIS ISSUE... SHARING EXPERIENCES AS A GAY, DISABLED WOMAN DISABLED CHILDREN’S PARTNERSHIP – HAVING YOUR SAY PROTECTING YOUR CHILD NOW AND IN THE FUTURE REMOTE ASSESSMENTS – THEY CAN WORK! DISABLED LIVING TRUSTEE GETS HIS VOICE HEARD AT UN CONFERENCE
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Welcome!
WELCOME TO OUR LATEST ISSUE
I
am sure, you like me are looking forward to a fabulous summer. For many parents school holidays are just around the corner, although for our readers in Scotland, they have already started. If you are planning a staycation or going a little further afield, I hope you have the opportunity for some real quality family time and maybe even a little ‘me time’! In this issue we hear from Steph Taylor who shares her experiences as a gay disabled young woman and the challenges she faced in her teenage years. Amy Rusby, Specialist Neurological Physiotherapist highlights how Covid changed the way she delivers
rehabilitation to her patients. We always want to share the amazing work of charities and in this issue, the spotlight is on Brainwave and Dystonia UK. Rhiannon Gogh, a Financial Advisor and mother to her autistic son, Tristan, outlines the importance of financial planning from a personal perspective. Find out why Josh Wintersgill, a Trustee of Disabled Living and regular exhibitor at the Kidz to Adultz exhibitions, was at the United Nations Conference in New York! If you have a story you would like to share, then please get in touch by sending an email to: magazine@disabledliving.co.uk
CONTENTS... Brainwave – supporting children with disabilities for over forty years..............4 Having your say....................8 SEND local offer– what’s going on over the Summer Holidays?............ 10 Protecting your child now and in the future....... 12 Sharing my experience as disabled entrepreneur with the UN........................ 16 Kidz to Adultz Wales & West..................... 19 This is my story................. 24 Virtual clinics..................... 28 Dystonia............................. 32
Carmel Hourigan Editor & Manager Kidz to Adultz Exhibitions
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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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BRAINWAVE
SUPPORTING CHILDREN WITH DISABILITIES FOR
over forty years
2022 IS A SPECIAL YEAR FOR CHILDREN’S CHARITY BRAINWAVE AS THEY’RE CELEBRATING THEIR 40TH ANNIVERSARY AND ARE SHARING WONDERFUL MEMORIES WITH FAMILIES WHO HAVE BEEN OR ARE CURRENTLY ON A BRAINWAVE PROGRAMME
B
rainwave has been helping children with disabilities achieve greater independence for over 40 years by aiming to improve their mobility, communication skills and learning potential through specialist therapies. The children that Brainwave work with have a range of
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conditions including: autism, cerebral palsy and genetic disorders such as Down syndrome. Their therapists, who are drawn from the mainstream fields of physiotherapy, speech and language therapy and learning and development, work with the family to devise a unique Therapy Programme, specifically designed to suit their
child’s needs, which will help and encourage them to unlock their child’s potential. Mum of two, Sarah from the Vale of Glamorgan, told us about her family’s journey with Brainwave: Sarah has been a part of Brainwave’s family for over 11 years and still remembers the very
first phone call she made to Ann at Brainwave when she asked for support for her two children who were diagnosed with autism. Sarah said: “It felt like a 10 tonne weight had been lifted off my shoulders when I first spoke to Brainwave as I no longer felt alone. I know there’s no cure for autism but to know that Brainwave was there to offer me help and advice every step of the way was incredible. I’m forever grateful for all that they have done to support my son Owain, my daughter Erin and us all as a family.” “Through the love, dedication, patience and genuine passion they have, my children have thrived and bloomed in school, as a family and in the outside world. We’ve got so many amazing memories, from Owain stealing the therapist Hannah’s jumper and walking round all day shouting “balloons” when he was virtually non verbal. Owain going from our little “limpet” in the pool to swimming freely, with confidence and Erin finding her independence and being able to regulate her emotions.” Since 1982, Brainwave (who have their headquarters in Bridgwater, Somerset) has delivered over 13,000 assessments to children with have a range of conditions including autism, cerebal palsy, sensory processing and Downs syndrome nationwide. They have delivered over 95,000 hours of therapy and loaned out 26,000 pieces of equipment for children to use whilst carrying out their individualised programme at home including therapy wedges, peanut balls and communication development aids.
If you can’t be at the exhibition in July, but would like to find out more, please get in touch at www.brainwave.org.uk
WELCOME! Kidz to Adultz is delighted to welcome childrens charity Brainwave to this year’s Wales and West exhibition and we encourage all visitors to head over to their stand J4 and have a chat with the team about their fantastic work. They are particularly keen to meet families seeking support for their children to discuss how they might be able to help.
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Brainwave are recruiting! We are seeking Specialist Paediatric Speech and Language therapists and Physiotherapists to join our team to deliver multidisciplinary support to children with disabilities. The successful candidates will have experience of using a range of interventions and strategies to support the complex needs of children with physical disabilities and profound and multiple learning disabilities.
Salary:
£31,365 to £37,890 FTE (plus benefits based on FTE 37.5 hour working week)
Locations:
Flexible – Warrington (Cheshire) or Colchester (Essex) areas at satellite/regional hubs*.
Hours:
Minimum 22.5 hours (3 days) per week.
Deadline:
Friday 8 July @ 5:00 pm
Full details and job description are available on our website. * The final decision on the location(s) will depend on the geographical area of the therapists recruited
Families attend a one-day initial or re-assessment ensuring you get to know them well, finding out what matters to them. Having time to talk through the programme is invaluable, as you can not only demonstrate and teach the strategies but discuss the rationale behind why you have suggested them. We work with children from birth to 12 years with conditions and diagnoses including: cerebral palsy, developmental delay, autism, brain Injury, Down’s syndrome, other genetic conditions, and children with no diagnosis. To arrange a tour of our Centre (in-person or virtual) or an informal chat, please contact: alexishawkes@brainwave.org.uk / 01278 429 089.
brainwave.org.uk 6 Registered Office: Marsh Lane, Huntworth Gate, Bridgwater, Somerset TA6 6LQ
Brainwave is a charity (1073238 / SC039137) and a company limited by guarantee (3666739)
HAVING
your say
DEANNE TALKS ABOUT ACCESS TO OPPORTUNITIES FOR YOUNG PEOPLE
D
eanne discusses her experience speaking to around 30 MPs and members of the House of Lords at our virtual parliamentary event on 17 June, hosted by Mary Foy MP. We can’t thank Deanne and Amber, and all the other young people and parents that spoke, enough. On Friday 17th June myself and Amber spoke at the Disabled Children’s Partnership parliamentary event for Members of Parliament and the House of Lords. The event was part of the Disabled Children’s Partnership’s #SendABetterMessageCampaign around the recently published SEND Green Paper. The event was held online via Zoom. Both parents and young people shared their stories of the current system and if they thought the current proposals will make things any better for families like mine. So, I’ll introduce us. I’m Deanne, mum to Amber who is 18 and has a disability and special educational needs. Amber shared her experiences of school, taking the local authority to tribunal at 16 for the right to go to the college of her choice, and the difference having social care support to develop her independence skills
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has made to her life. As Amber says constantly, “I only want the same opportunities as my non disabled friends.” Both myself and Amber are no strangers to campaigning and it sort of became part of our lives by default. Myself not wanting other families to face the constant fighting and battling for basic support we have faced, and Amber is keen that disabled young people have a voice and access to opportunities. We were both really keen to share our experiences with MPs and Lords to hopefully influence them to support the campaign and better understand the experiences of families with disabled children and young people. Amber was really keen to share how good quality support and the right attitude from staff at her sixth form have transformed her life, but she’s now concerned what will happen when she moves to adult services. As even though the local authority says this must be well planned for age 14+ at the latest this just has not happened. Annual reviews haven’t been done as the Law states and I ended up informing the Social Worker that Amber has turned 18. We both enjoyed speaking at the event, and Amber found the preplanned questions really helpful
as it meant I could support her beforehand to think what she wanted to say as this is sometimes something she struggles with. Sharing our personal experiences sometimes can be tough and I’m still surprised by how upset I get when recounting the many injustices my girl has faced simply because she has a disability. However, I’m glad we were given the opportunity as I believe it’s only from hearing real life experiences like ours and the many shared at today’s event that real change will happen! So finally, thank you to the Disabled Children’s Partnership for inviting us and to all the MPs and Lords for attending, to Mary Kelly Foy MP for hosting and to everyone who invited their MP and shared the event on social media. Coverage is key to keeping this high on the agenda. We all had so much to say we and unfortunately ran out of time! One last thing from today is that accountability is key within SEND and clearly the current proposals do not go far enough on this. To get the latest updates and ways to get involved with our campaigning, make sure you are signed up to our email network.
THE SEND LOCAL OFFER –
what’s going on OVER THE SUMMER HOLIDAYS?
T
£220m for local councils to deliver he SEND (Special Educational free holiday clubs. These clubs will Needs & Disability) Local Offer offer free healthy food and physical provides information in a single activities. Funding is expected to place. The Local Offer helps children, cover activities young people, for at least four and their parents hours a day, four to understand days a week, for what services four weeks of and support The government has the holidays. they can expect Councils are from a range of allocated £220m to expected to offer local agencies offer free holiday clubs. free club access - including to all children their statutory eligible for free entitlements. school meals. The SEND pages Children who do of your Local not receive free meals may still be Authority website will direct you offered places, but not for free. to information about the activities available in your area. www.redbankhouse.com The government has allocated
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Manchester City Council are working in partnership with Disabled Living to provide free sessions for children and their siblings in the multi-sensory rooms at Redbank House, not only for this summer holiday period, but also October and February half term holidays.
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PROTECTING YOUR CHILD NOW AND IN THE FUTURE:
“There’s no handbook for situations like this” HOW DO YOU MAKE SURE YOUR CHILD WILL BE CARED FOR? CHARTERED FINANCIAL ADVISOR RHIANNON GOGH SHARES THE LESSONS SHE LEARNED WHEN HER SON TRISTAN WAS DIAGNOSED WITH AUTISM 12
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y son Tristan was diagnosed with autism at 36 months and as I am sure any parent will appreciate, at the time it really didn’t sink in. I knew very little about autism and some ten years later there is still so much I don’t understand. It was within two years of Tristan’s diagnosis that I saw an advert for a seminar on a website for parent/ carers of children with special needs. It was run by a firm of solicitors in association with a local charity. At this point in my life I was a qualified financial adviser, running my own business and caring for my son at the same time. When the seminar came, I sat at the back of the room and listened as those presenting discussed trusts and wills. Honestly, as much as I tried to understand, it felt like a dark art. I didn’t really grasp the importance of the stories I was hearing and there was a lot of jargon. I picked up copies of the slides and left. I suppose I’d never really thought (or rather wanted to think) about what would happen when I was no longer here. It simply didn’t bear thinking about. Driving home from the seminar it suddenly dawned on me that what I had put in place for our own finances was great, but not for a family like ours. I’d named Tristan in my will – should I have done that? I’d chosen guardians that didn’t know that my son was autistic and I hadn’t used trusts to protect my life insurance and pensions for a start. As a chartered financial adviser, I understood the role of trusts, but hadn’t considered them for my son. Picturing in my mind what would happen should I die, I knew that I had to get my house in order. Thankfully years of training could be put to a very personal use. Over the next two years I researched and refreshed my knowledge around trusts. I visited solicitors, looked at draft wills, read as many trusts as I could and restructured what I had set up for our family. I questioned different experts at different seminars in great detail (how irritating I must have been) but I needed to get it right.
I arranged a new will, with a trust, I made sure my life insurances were fit for purpose, and spent time thinking about how the pensions would be ‘left’. I created presentations explaining what I’d done and visited charities, special schools and parent carer forums to share and listen. I heard stories of the trouble caused by money being left without the protection of a trust, so I knew that what I had to share was important. I was invited to speak at conferences and when COVID hit, I set up online presentations on Eventbrite. I had quite inadvertently struck a chord with thousands of parents and carers who like me, worried about what would happen to a loved one when we were no longer here to protect them. Of course, there is no handbook for situations like this. In my experience, many simply aren’t aware of the difficulties in leaving money to someone with vulnerabilities, or how mental capacity has an impact. I certainly hadn’t considered whether my son would be in receipt of means tested care. He will always struggle to ‘read’ body language but if I wasn’t around would he know if he was being manipulated for example? It horrified me to think of it. Thankfully
using trusts is a tried and tested way of protecting the vulnerable that can ultimately give parents and carers reassurance and peace of mind. What is right for my son, may not be right for everyone, there is a wide range of needs and vulnerabilities to consider. However overwhelming it may seem though, the complexities of providing for a child with a disability are not insurmountable. If you don’t know where to start, the first step is reading this article. The next step is putting time aside to plan and find out more. Think about what you want to happen, who might be good guardians or trustees for example? Search for online courses or seminars and talk to other parents and professionals. Seek out a friendly solicitor or financial adviser who understands the challenges and ask relentless questions if you need to. A professional who is knowledgeable and committed to helping you, really won’t mind. Rhiannon Gogh FPFS is a Chartered Financial Adviser and Fellow of the Personal Finance Society. She is the Director of PlanIt Future Financial Ltd www.planitfuture.co.uk. The views expressed in this article are her own.
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SHARING MY EXPERIENCE AS A
disabled entrepreneur WITH THE UN
I’M JOSH WINTERSGILL, 28, AND I LIVE WITH SPINAL MUSCULAR ATROPHY. IN JUNE, I WAS INVITED BY THE UNITED NATIONS ON BEHALF OF LEONARD CHESHIRE AS ONE OF THEIR GLOBAL AMBASSADORS TO SPEAK AT COSP 15, A THREEDAY EVENT IN NEW YORK (THE 15TH CONFERENCE OF STATE PARTIES TO THE UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES) 16
M
y session took place on day 2 of COSP 15, where I had to deliver a speech based on my lived experience to the roundtable session on economic empowerment and entrepreneurship of persons with disabilities—covering many aspects of early employment and barriers to securing internships, to finding employment after university and my transition into entrepreneurship with my business Able Move. Able Move is known for transferring slings for wheelchair users to access air travel, alongside their popular waterproof wheelchair towels. Before my session started, I was privileged to be invited to a side event hosted by the UK’s Minister for Disabled People, Chloe Smith, on Increasing Disability Employment. Following that, Chloe asked me to have a private conversation about broader issues experienced through my journey into entrepreneurship and employment. I was also really pleased to highlight some of the fantastic research and work that Leonard Cheshire has been doing with youth with disabilities, including their Crisis Talks report, which aimed to understand the impact of Covid on their access to employment, along with the benefits that programmes such as Change 100 hold for youth with disabilities. I found it fascinating to understand and share Leonard Cheshire’s programmes’ combined reach and impact in the UK and worldwide. To finish the conference, I was very fortunate to have the opportunity to make recommendations to those attending COSP 15, including Member States, private sector organisations, UN agencies, development partners and NGOs from around the world. These were: • Social protection systems should be designed not to exclude or make it difficult for persons with disabilities to enter entrepreneurship. • Social protection systems must accommodate the
additional costs faced by persons with disabilities who are employed, selfemployed or entrepreneurs. However, governments in low-income countries may need support through, for example, leveraging technical and financial assistance from development partners and public-private initiatives. • Focus on reaching the most marginalised people with policies that address the intersecting challenges faced by many persons with disabilities, such as gender, urban-rural locations, wealth and poverty, and those with multiple or complex disabilities. • Join policy-making across different sectors, including education, health, and housing, and strive to create life-long social protection schemes. • Commit to including persons with disabilities and their representative organisations in all policy and decision-making. To share my lived experience and represent our country and the disabled community globally in entrepreneurship and employment was quite the experience – daunting but enriching! Links: https://media.un.org/en/ asset/k14/k14m4mzzei Speech: 42 minutes in - Josh’s Speech Q&A: 01:41:00 - Josh’s responses to questions
A LITTLE MORE ABOUT JOSH… Josh Wintersgill is a Trustee of Disabled Living, the charity behind the Kidz to Adultz Exhibitions and magazine. Josh, is founder of the company Able Move and a regular exhibitor at the Kidz to Adultz Exhibitions. Able Move provides specialist slings and other devices to help wheelchair users explore new possibilities with safety, dignity and comfort. Josh, alongside his business has won many awards, including UK Disabled Entrepreneur and Great Britain’s Best Young Entrepreneur. In addition, he has successfully secured investment for Able Move from the Founder of easyJet, Sir Stelios HajiIoannou and his easy family of brands. Aside from the entrepreneurial world, Josh actively campaigns to help improve air travel through accessibility advisory groups as well providing groundbreaking research on disabled passengers for the aviation industry at a global level. Josh is a lover of technology, where he spent 5 years working in Tech after graduating from University West of England in IT management and business and in 2019 I received an Honorary Masters in Technology. Last but not least, Josh an aspiring Paralympian for Great Britain in air-rifle. Email: joshwintersgill@ ablemove.co.uk
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THURSDAY 7TH JULY 2022, 9.30AM – 4.30PM
KIDZ TO ADULTZ WALES & WEST
100+ exhibitors
CPD seminars Fun & features
A free exhibition for children and young people with disabilities and additional needs, and the people and professionals who support them
INTERNATIONAL CONVENTION CENTRE (ICC), NEWPORT, SOUTH WALES www.kidzexhibitions.co.uk
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KIDZ TO ADULTZ UPCOMING EVENTS A free event dedicated to children and young people with disabilities and additional needs, and the people who support them. Over 100 exhibitors CPD seminars Fun and features
KIDZ TO ADULTZ WALES & WEST The International Convention Centre (ICC), Newport
KIDZ TO ADULTZ SCOTLAND Royal Highland Centre, Edinburgh
KIDZ TO ADULTZ NORTH New venue! Manchester Central, Manchester
KIDZ TO ADULTZ MIDDLE CBS Arena (Previously Ricoh Arena), Coventry
KIDZ TO ADULTZ SOUTH Farnborough International Exhibition & Conference Centre, Farnborough
Scan me Thursday
7th
July 2022
Thursday
8th
September 2022
Tuesday
1st
November 2022
Thursday
16th
March 2023 Tuesday
16th May 2023
THIS IS
my story
TO TELL...
STEPH TAYLOR SHARES HER EXPERIENCES AS A GAY, DISABLED YOUNG WOMAN 24
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y life changed drastically when I moved from Bedfordshire to Cheshire, because everything started to revolve around two things: my disability, and my sexuality. This is how I found my place. I’m Steph Taylor, a 24 year old with a recent first-class degree in digital photography with radio production. I have two disabilities, Sacral Agenesis, a rare disorder, which means I am missing my Sacrum and Coccyx and I am diagnosed with Hypermobility Ehlers-Danlos Syndrome (hEDS) which revolves around my connective tissue and the lack of collagen in the skin. This causes dislocations and bendy joints which has an affect on my skin, ligaments, tendons and blood vessels. Growing up I was not only battling with my disability, but I was also internally battling who I was. Coming from a Catholic family and being brought up Catholic, I attended church and had to listen to the priest talk about what was considered ‘wrong’ and ‘against beliefs’. My family were open (my grandparents best friends were gay), and I didn’t think that being attracted to my best friend, who happened to be a girl, was a bad thing – but I did know that I had to keep it secret. I found myself in year six of primary school having a cheeky kiss with my best friend and were caught. I found myself desperately trying to talk what they witnessed into something else because I knew I would be expelled and in serious trouble. I knew from that moment on I had to keep who I was quiet, so I expressed how ‘fit’ I thought all the boys were. However, pretending over time only made me believe I was bisexual. My family, who knew I was bisexual from 11 years old, were nothing but supportive. Apart from the hiccup at school, my life being part of LGBTQIA+ was a happier story than most people’s. It might have started off rocky, but I never had to do the big coming out announcement. I made it pretty obvious by commenting how much I fancied girls on TV, and I never really had to think about how people might
perceive and treat me differently because of my sexuality. I was already used to dealing with this because of my disability, so sexuality never came into it. It wasn’t until I moved up North and started college that I suddenly realised I could become subject to homophobia and unfortunately, I was subject to hate crime. In fact, it was my best friend at the time, at the end of my first year at college, she attacked, not only my sexuality, but my disability too. Thankfully, I had my cousin, Jaymi Hensley of Union J and X Factor, to help with advice as he had publicly came out to fans. His coming out story helped so many fans come out and feel confident in themselves and their sexuality. It was a beautiful thing to watch. Secretly he helped me too; he helped me confirm some things that were happening in my head. At the time I was dating a boy. I didn’t feel comfortable at all and it opened my eyes to my sexuality. I had a sneaky suspicion for a while I might be lesbian but I needed it confirming. My mum was an absolute rock during that time. She sat down and let me talk through my feelings, she supported me and told me it was ok to be whoever I wanted to be. It was because of her that I knew I had to come out properly to everyone. It was a big, scary moment – but also exciting. I then came out to everyone on Facebook, which was quite scary because you’re not always going to get the reception you hoped for. You’re suddenly putting yourself in a world of hate crime and people that don’t want to know you. But in fact, people were so supportive. I surrounded myself with people that matter, and I thought, ‘this is my story to tell.’ I then joined an LGBTQIA+ youth group called Utopia, a safe and supportive place where I could really be myself and share my story with others and use my privilege of having a supportive family and a happy coming out story to help others who weren’t so fortunate as me; I became their support bubble and family. My time since starting university
has been incredible, albeit challenging at times. I’m really content with my sexuality. I joined an LGBTQIA+ society at university and I was surrounded by many other LGBTQIA+ students which made me feel part of a community and family. I no longer felt like the odd one out or feared hate crime. I felt safe. Sometimes I do feel like a minority. Being disabled, female and gay puts me in three categories that are subject to different types of hate crime. Even though that can be scary it makes me want to be more expressive of who I am. It has taken 24 years to finally get to the point where I’m ready to express how I envision myself in my head. Before graduation, I decided to get half my head shaved and try out different clothes styles. I now have piercings and tattoos. I’ve realised that you’re never too old to find your true self and express yourself the way you’ve always wanted to. I understand that a positive outcome cannot happen for everyone so I want to share some advice that might help. There is always going to be someone out there, whether they’re your friend or a professional or even someone who you don’t know, who accepts you and is going to be there for you. There are safe places everywhere, whether
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that be youth and adult groups, cafés or clubs. A lot of these places have trained professionals that can be your support person and help you with your journey, taking the stress and pressure off you and giving you someone to talk to when you need it. There are also sports clubs that are safe spaces, for example, I am the vice-captain of a club called Cheshire Phoenix Wheelchair Basketball club based in Ellesmere Port. Within our group, and the sport in general, there is an incredible number of gay women alongside many other people in the LGBTQIA+ community. It’s a fantastic, inclusive sport, and at our club we have anyone and everyone. We are a safe place and are very mental health orientated. I wouldn’t want to end without mentioning how Kidz to Adultz North exhibition in Manchester really changed my life. A few years before the pandemic, I went and bumped into Cherylee Houston (known for portraying Izzy in Coronation Street). After fangirling, we got talking and I was invited to attend DANC (Disabled Artists Networking Community). I jumped at the chance and ever since then I have been involved by taking photos of events and attending their meet ups and webinars. I have met so many incredible people and have been given so many amazing opportunities that I really owe the event so much for creating a place where these types of situations can happen. There will always be people out there who don’t agree with who you are, and who want to verbally attack you because they think they’re more important than you. Those nasty people will always be outnumbered by people who will love how you look and will want to big you up and give you confidence. Unfortunately those ideas will never disappear, so it might feel that there will never be a right time to do what you want – so my advice is to jump into the deep end, dye your hair the colour you want, try that hairstyle you’ve been thinking about, and buy that item of clothing you’ve been too self-conscious to wear!
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ARE CHANGING HOW WE SUPPORT PATIENTS AMY RUSBY, SPECIALIST NEUROLOGICAL PHYSIOTHERAPIST, DISCUSSES HOW ADAPTING TO COVID-19 HAS LED TO NEW AND EXCITING WAYS OF WORKING 28
H
aving worked as a neurological physiotherapist in the community setting for over twenty years, when Covid-19 hit, it completely disrupted how I deliver rehabilitation to my patients. It wasn’t safe to be going from house to house, so my practice was put on hold. But patients were missing out, and desperately in need. After a year or so, I needed to come up with another way to provide physiotherapy. I began to adapt my way of working, providing neurological physiotherapy remotely with patients – all by video call. I am sure a lot of people reading this will be thinking, as I did initially, “how would that work?” In fact, this new way of working has expanded the possibilities of neurological physiotherapy. All that is needed is an internet connection and a place to position the device, and then the rehabilitation can take place within the comfort of the patient’s own home.
WHY IT WORKS The benefits of virtual appointments for patients are many. Of course, no travelling to clinics is needed. By being in their own homes, patients can be more relaxed and comfortable, and more confident in their normal environment. In fact, patients can be anywhere, in this country or abroad, and still be able to access the expertise they need. We know that the families and carers of our patients are central to their wellbeing, and virtual appointments all them to be more involved in the physiotherapy. It can be a worrying time and by the families being more involved, they can feel more supported and have the opportunity to gain more information and advice. They often feel more empowered by having a better understanding and the patients often feel more in control of their own therapy with me as the facilitator. It is also very easy to add other people into the call, so if it is helpful for another parent to join, this can easily be done at their
convenience wherever they are. Sometimes it is beneficial to include school or college staff in supporting the patient with physiotherapy and this can also be achieved. Having key people on the call also means that training can be given to people that support the patient.
WHAT HAPPENS AT A VIRTUAL CLINIC? During these video calls, we work on many aspects of therapy, as in the more traditional clinic appointments. This includes activating the right muscles for improved movement and posture; maintaining range of movement; balance; co-ordination; strengthening; proprioception / spatial awareness; perception/ awareness of whole body as one and as individual parts and how they work together; walking and sometimes jumping and running; pain management; fatigue management and chest/respiratory care. All of these elements work on improved function and making daily living easier, and we work to engage young people by using activities, tasks, games, dancing, anything that they enjoy - because therapy is meant to enhance life, so we incorporate life into therapy and therapy into life. That way, the effects and benefits last. This approach works so well for so many people, including those that are high-functioning as well as those that need more support. Training can be done via the video calls to enable hands-on therapy as well, given by the physiotherapist via the hands of the parents or support staff with close guidance. However, there is a small number of patients that need specific handling that can only be done by a specialist and for this group of patients, face to face appointments are necessary. I work with people of all ages and all neurological conditions, so including cerebral palsy, complex learning and physical disability, brain tumours, strokes, spinal injuries, acquired brain injury, Retts sydrome, and more.
CASE STUDIES OF NEUROLOGICAL PHYSIOTHERAPY BY VIDEO CALL: Who? A man of 22 who developed hydrocephalus when he was 17. He lives at home with his parents and brother and works in a supermarket on the checkout 2 short days a week. What support is needed?: His main problems are balance, co-ordination and spatial awareness, all affecting his ability to walk. He has had several falls. Difficulties with short-term memory also affect his ability to remember sequences to help with tasks such as getting up from the chair in a good position, and how to keep better control of his balance and walking. He can walk around the house and short distances outside, but needs support and a wheelchair for longer distances. What have been the results? He has weekly sessions of neurophysiotherapy and has made excellent progress with practising routines to help with standing up / sitting down, walking, balance, coordination. He is now more aware of where the true middle is when standing, is better able to clear the ground with his right foot and has had significantly fewer falls, including outside when walking from the supermarket to the car when he is picked up from work. He now uses a treadmill to enable him to build up his exercise tolerance and this enhances his walking ability as well. We also liaised with other services to get equipment provided for making him safer on the stairs and getting in and out of the bath. Who? A lady of 20 who had a brain tumour as a child followed by an acquired brain injury. She lives at home, part of the time with her mother and part with her father.
What support is needed? She is planning to go to college in September to do art, dance and drama and has problems remembering to use her left arm and hand, which is also more difficult for her to use than the right one. She has some difficulties with balance and co-ordination and avoids things she finds difficult, so was not fulfilling her full potential. What have been the results? She had an assessment and some neurological physiotherapy and after just two sessions she was dancing more, exercising, walking better, more confident to use her left arm to drink from a beaker and to involve in her art. A report was provided for the college regarding special education needs and her mother was able to better understand and know how to help her to do the things she can do but didn’t think she could. Who? A girl of 8 who has a brain tumour. She lives with both parents and her younger brother. She loves dancing and playing board games. What support is needed?: She has difficulties using her left hand and arm, as well as difficulties with walking, balance and tiredness. What have been the results?: With weekly neuro-physiotherapy we have incorporated dancing to music to improve her balance, timing and co-ordination, played games such as draughts and jigsaws using only her left hand, provided a programme of exercises that her parents can work on with her. We have also worked on managing the tiredness, so she can do her school work, as well as enjoy more quality time watching her favourite tv programmes and playing with her brother. A lot of information, advice and support is being given to the family as well as help accessing other services. Who: A boy of 17 who has complex physical and learning difficulties. He lives in a specialist care home and has 2 to 1 care during the day and 1 to 1 care at night.
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What support is needed? He has been having problems with pain resulting from poor range of movement and stiffness in his limbs, chest infections from aspirating due to poor swallowing ability, and the staff have been struggling with transfers so he was being hoisted from wheelchair to bed. He also has a standing frame that he was not using much due to poor tolerance. What have been the results? He has been having two sessions of neurophysiotherapy a week and this has involved working really closely with his support staff, training them to be able to do passive movements
to improve his flexibility and make him more comfortable. Training has also involved positioning and chest physio to enable him to keep his chest clearer, leading to fewer infections. We have also worked with adjustments to the standing frame so it is set up more specifically for his individual needs and he is using that every day, as well as advising on suitable equipment and training staff with safe transfers so he is no longer having to be hoisted all the time. Amy Rusby BSc Hons – Specialist Neurological Physiotherapist amy.rusby@nruk.co.uk 07741 908830
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DYSTONIA:
the facts
DYSTONIA IS A NEUROLOGICAL MOVEMENT DISORDER THAT IS ESTIMATED TO AFFECT AT LEAST 100,000 PEOPLE IN THE UK 32
I
t presents with uncontrollable muscle spasms triggered by incorrect signals from the brain, which can be painful. Dystonia can affect any region of the body including the eyelids, face, jaw, vocal cords, torso, limbs, hands and feet. It presents differently depending on the region of the body affected and each type has its own clinical name. Dystonia can also affect people at different times in their lives, starting in adult life or childhood. It is usually a lifelong condition, however it is not usually life limiting. While there is currently no cure, several treatment options are available that can help relieve the symptoms and scientists around the world are actively pursuing research toward new therapies. Dystonia can be an isolating condition. It can be scary not knowing what the diagnosis means, not only to your life but also how it might affect your friends and family. While the community is large, it is also regionally diverse, and this can lead to people feeling unsure and alone. The ‘Reach Out, Reach All’ campaign aims to bring the dystonia community together through animation, podcasts, and webinars. As a charity, we want to share real life stories navigated by people with the condition to give hope and offer practical tips to help. We are looking to combat the social isolation that is so much a part of the condition. Dystonia UK has a wide range of informative resources to help those closely affected by the condition.
PODCASTS
The ‘Dystonia Matters Podcast’ is a place where people can share their stories in their own words with no constraints. Listen to our first podcast series as our guests discuss dystonia and mental health, working with dystonia and awareness raising
amongst other topics. Listen now! www.dystonia.org.uk/ dmpodcast
ANIMATIONS
‘Dystonia Animated’ is a series of short animations focusing on “What is dystonia?” in children and how the diagnosis affects their lives. With help from families and young people with dystonia, we have now created two episodes. The first explains dystonia in a format children and young people can relate to and the second episode focuses on the journey of diagnosis with a visit to the hospital. Watch our first two episodes: www. dystonia.org.uk/dystonia-animated
WEBINARS
Over the last year we have hosted seven webinars and invited a host of specialist speakers such as Dan Lumsden (Consultant Paediatric Neurologist) and Jon Ellenbogen (Consultant Neurosurgeon). Each speaker takes the time to answer questions from our community and provide valuable information. Catch up with all our webinars: www.dystonia.org.uk/webinars ‘Dystonia Around The World’ is back!! We are so excited to be bringing back this hugely popular one of a kind fully inclusive virtual event! Join Dystonia UK this summer and help us raise awareness of dystonia as we virtually travel 25,000 miles
around the world whilst raising £25,000. This year we will be jetting off from London in August with our London Marathon runners bringing us back home on the 2nd of October. ‘Dystonia Around The World’ was created to make sure everyone can take part, so every 10 minutes of any activity equals to 1 mile travelled. How you decide to complete your miles is up to you! Dust your trainers off, put your ballet shoes on, get your oven warmed up and your orienteering map ready to start collecting your miles!
HOW CAN I GET INVOLVED? Head over to dystoniaaround theworld.org to set up your own fundraising page • Join on your own or set up a team page (share the fun with friends and family). • Tell your story, create your own profile picture, and write your first blog post! • Connect Strava to automatically upload your miles. • Record your miles or minutes – remember every 10 minutes of any activity = 1 mile travelled. • Raise sponsorship. Get your friends, family, company, or school to sponsor your activities. To help you kick start your fundraising, we will send you our awesome fundraising pack filled with exciting activities to increase your miles. We will send you a Dystonia UK T-Shirt or vest once you have reached your first £10 target! Any questions, please email fundraising@dystonia.org.uk
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S E U S IS E R U T U F E H T S IS DON’T M . .. E IN Z A G A M Z T L U D A O T OF KIDZ
You can find each new edition online, so you can always keep up to date with what’s new and read all the interesting articles. Just visit www.kidzexhibitions.co.uk DO YOU WANT TO RECEIVE A COPY OF BBUK’S
‘ Talk about...’ NEWSLETTER?
B
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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SUPPLIERS YOU CAN TRUST
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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 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
