Enable May / June 2018

enable Forget can’t - think can!

May / June 2018

www.enablemagazine.co.uk

GO DUTCH THIS SUMMER ACCESSIBLE HOLIDAYS ON THE HORIZON

THE COST OF DISABILITY

AND THE POWER OF THE PURPLE POUND

PROUD TO BE DIFFERENT REDEFINING AUTISM

WIN

AN ACCESSIBLE BREAK AT BLAGDON FARM

What

Katie did next

The philanthropist on confidence, her work ethic and who inspires her

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enable Forget can’t - think can!

PUBLISHER Denise Connelly denise@dcpublishing.co.uk

Welcome

EDITOR Laura Hamilton laura.hamilton@dcpublishing.co.uk

Welcome to the summer edition of Enable!

FEATURES WRITER Lorne Gillies lorne.gillies@dcpublishing.co.uk EDITORIAL CONTRIBUTORS Melissa Holmes Tim Rushby-Smith Alisdair Suttie DESIGN AND PRODUCTION Lucy Baillie lucy.baillie@dcpublishing.co.uk PRODUCTION ASSISTANT Lisa McCabe lisa.mccabe@dcpublishing.co.uk SALES Marian Mathieson marian.mathieson@dcpublishing.co.uk Peter Milne peter.milne@dcpublishing.co.uk ENABLE MAGAZINE www.enablemagazine.co.uk

DC Publishing Ltd, 198 Bath Street, Glasgow, G2 4HG Tel: 0844 249 9007

COVER PRICE £3.00

Warm weather is finally here – about time. Are you thinking of where to go on your summer holiday?

We profile one of the most accessible countries in the world, the Netherlands, and give you a guide of where to go outside of Amsterdam on page 60.

If a trip abroad isn’t on the agenda, there’s plenty happening at home. Summertime means festivals and days out enjoying the countryside: they’re more accessible than you might think and time spent in the great outdoors will do us all the world of good – check out page 63 for some fun days out and festivals. Don’t forget to enter our competition to win a stay at Blagdon Farm on page 40.

Catching some sun isn’t the only thing on our mind. As usual, we explore the world of care: caring for a loved one is one of the most important jobs you will ever have. We look at the importance of respite care and why you shouldn’t feel guilty about taking it and how to maintain a relationship when one of you becomes the other’s carer.

This issue is full of interesting people, as per usual. We speak to conductor James Rose about his innovative head baton that was made with a 3D printer and how he uses it to direct the first disability-led ensemble on page 69, and Jayne Hardman, who has a life-changing prosthetic nose that is held on by magnets on page 82.

Our cover star is the inspiring Katie Piper, who positively glows with self-confidence and happiness. We speak to her about what drives her and what she wants to teach her two young daughters as they grow up.

Hope you enjoy reading!

EDITOR’S PICKS...

23 MONEY MONEY MONEY: The hidden costs of disability. Being disabled isn’t cheap: in fact, it costs an extra £560 a month in the UK according to Scope.

37 MENTAL HEALTH FINDING THE WORDS Talking is the first step on your road to recovery, but it can be hard to open up.

73 BRING YOUR A GAME Only 16% of people who are autistic are in full-time employment.

We look at how to change this.

SAY HELLO We love hearing from readers so reach out on Twitter @enablemagazine

Laura Hamilton, Editor

SUBSCRIBE TO ENABLE You can get every issue of Enable delivered direct to your door, for £25 for two years or £15 for one. Head to www.enablemagazine.co.uk/subscribe, or call us in the office on 0844 249 9007.

Enable Magazine

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@enablemagazine

©DC Publishing Ltd 2018. All rights reserved. No part of this publication may be reproduced or used in any way without prior written permission from the publisher. The views expressed in this magazine are not necessarily those of DC Publishing Ltd. The publisher takes no responsibility for claims made by advertisers within the publication. Every effort has been made to ensure that information is accurate; while dates and prices are correct at time of going to print, DC Publishing Ltd takes no responsibility for omissions and errors.

www.enablemagazine.co.uk

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What’s

PIC: © CHANNEL4

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32 63

11 69

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interviews WHAT KATIE DID NEXT Katie Piper talks about confidence, who inspires her and the book she has written with her mum.

TRAILBLAZER We catch up with James Rose who is the conductor of the first ever disability-led ensemble.

17

life MONEY MONEY MONEY The cost of disability. New research has shown that disabled people pay a hefty premium on everything. Can the power of the purple pound change that?

35

YOUR NEW ROOMIE Solving the housing crisis and adult loneliness in one fell swoop: homesharing.

37

ON YOUR MIND Our brains control everything, but we still don’t fully understand our biggest organ. An acquired brain injury can change life as you know it.

42

THE LEARNING CURVE OF DIAGNOSIS A diagnosis can bring up lots of new emotions. We speak to two women with MS.

44

THE DEMENTIA BARBER Take a trip down memory lane and get the ‘50s barbershop experience.

4

23

60

GO DUTCH THIS SUMMER The Netherlands are calling you for an amazing, accessible holiday.

63

ACCESSIBLE DAYS OUT It’s finally the summer, and it’s time to get outdoors and enjoy the sun.

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49

carers IN SICKNESS AND IN HEALTH How does it affect your relationship when one of you acquires a disability?

TAKE A BREAK The importance of respite care for everyone cannot be stressed enough.

www.enablemagazine.co.uk

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CONTENTS

60 32

spotlight PROUD TO BE DIFFERENT As awareness of autism increases, more and more people are proud to be neurodiverse.

49

WHAT ABOUT US Young disabled LGBTQ+ people are being ignored. One researcher wants to give them back their voices.

50

MIND THE GAP Public transport is a lifeline for disabled people but it can also be difficult to navigate.

78

A GOLDEN TICKET Channel 4 is actively looking to recruit more disabled people, so what are you waiting for?

82

29

THE POWER OF PROSTHETICS Limbs come to mind when you think of prosthetics, and not noses. Jayne Hardman tells us her story.

support HOW TO APPEAL YOUR PIP We take you through appealing your PIP and simplify the tough process.

46

MENTAL HEALTH FINDING THE WORDS Opening up and speaking about how you’re feeling is the first step to recovery but it can also be the hardest.

71

STEPPING STONES TO VOLUNTEERING It’s annual Volunteer Week in June so let’s celebrate all the time volunteers put in.

WIN

56

A STAY AT BLAGDON FARM P40

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27

56

family WHAT HAPPENS WHEN I’M GONE? It’s very important to make sure that the people you care for are looked after when you pass away.

66

voices

LET’S TALK KIT Tim Rushby-Smith chats money and how expensive products aimed at disabled people are.

motoring

THE REVIEW This issue we take the Vauxhall Grandland X for a spin.

73 77

sport

ACCESS ALL ACTIVITIES Whatever your level of fitness and mobility is, it’s important to keep active.

employment & education BRING YOUR A GAME Autistic people are drastically underemployed. What can be done to include them in the workplace?

EXPERIENCE WORTH ITS WEIGHT IN GOLD NHS Lothian’s work placements were exactly what one graduate needed to boost his CV.

www.enablemagazine.co.uk

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30/04/2018 12:58

NEWS

The

LATEST A roundup of the disability news stories making the headlines

DISABILITY COMING TO MISS ENGLAND COMPETITION

Medical cannabis petition triggers parliament debate A SCOTTISH MUM’S online campaign to make medicinal cannabis available on the NHS to ease her five-year-old son’s epilepsy has reached 100,000 signatures, calling for a debate in Parliament.

In under six weeks, Karen Gray’s petition, which was posted on political activist site 38 Degrees, has received the requisite number of signatures to trigger MPs to discuss patients receiving medical cannabis on the NHS. “I’m so overwhelmed by the support and can’t thank everyone enough. To trigger a debate in Parliament is fantastic and is another step forward. It would mean everything if Murray could access CBD oil,” says Karen.

It’s believed that receiving medicinal cannabis, known as CBD oil, alleviates seizures.

Murray was diagnosed with a rare form of epilepsy called

myoclonic astatic epilepsy (also known as Doose Syndrome) in December, which can see him have up to 100 severe seizures on a daily basis.

“If medical cannabis was available on the NHS, my son may have a chance of a normal life,” says Karen. Murray’s condition is debilitating, and he has only attended two weeks of school this academic year. The young boy receives high doses of medication, including steroids which affect his weight. Karen believes CBD oil could be a solution to these issues.

Cannabis is illegal in the UK and carries a prison sentence of five years. However, support for Murray and his mother’s call for the NHS to provide the drug for medicinal purposes has been paramount after Karen posted a video of one of Murray’s violent seizures.

TEENAGE STUDENT MEGAN REEVE, who has cerebral palsy and Asperger’s syndrome, is in the running to become the first ever disabled winner of the Miss England competition.

Megan is the first contestant to enter the event with cerebral palsy, and she has already had a good start to her bid for beauty queen. After facing discrimination and violence from her peers due to her disability, Megan, 16, decided not to let her impairment hold her back. After entering a local beauty contest Megan was crowned Miss Rugby in Bedworth – meaning she has qualified for the semi-finals of Miss England.

She says: “Winning is a great confidence booster and proof that you should never let disability stand in the way of achieving what you want in life.”

The Miss England competition will be held in July.

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www.enablemagazine.co.uk

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30/04/2018 12:55

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Fuel figures shown are official EU test figures, to be used as a guide for comparative purposes and may not reflect real driving results.

Mirage CVT Auto fuel consumption in mpg (ltrs/100km): Urban 57.6 (4.9), Extra Urban 72.4 (3.9), Combined 65.7 (4.3), CO2 emissions 99g/km. ASX 2 fuel consumption in mpg (ltrs/100km): Urban 38.2 (7.4), Extra Urban 57.6 (4.9), Combined 48.7 (5.8), CO2 emissions 135g/km. Eclipse Cross 2 fuel consumption in mpg (ltrs/100km): Urban 34.4 (8.2), Extra Urban 49.6 (5.7), Combined 42.8 (6.6), CO2 emissions 151g/km. Outlander Diesel 3 fuel consumption in mpg (ltrs/100km): Urban 40.9 - 45.6 (6.9 - 6.2), Extra Urban 54.3 - 58.9 (5.2 - 4.8), Combined 48.7 - 53.3 (5.8 - 5.3), CO2 emissions 139g/km - 154g/km.

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25/04/2018 13/04/2018 10:09 16:42

NEWS

ONE OF THE LONGEST running television series in the UK is breaking the media mould on disability. Hollyoaks has announced that Talia Grant, who identifies as having high-functioning autism, will be joining the Channel 4 programme later in the year.

Talia is set to play the role of autistic teenager Brooke Hathaway who will be fostered by the Osborne family. This move will see Talia become one of the first autistic actresses to appear on mainstream television in British history.

Grant says: “For a long time there has been no representation on screen of autistic women especially autistic women of colour, so I am really looking forward to developing the character of Brooke and representing something that perhaps people are unaware of.”

Figures from the National Autistic Society show that one in 100 people are on the autistic spectrum; representation in Hollyoaks is being praised. Producers of the show have been working closely with the National Autistic Society and Access All Areas to ensure accurate representation.

PIC: © LIME PICTURES

HOLLYOAKS SET TO WELCOME FIRST AUTISTIC ACTRESS

Demand for specialised support housing increases RECENT RESEARCH FROM LEADING learning disability charity Mencap has revealed that the Specialised Support Housing (SSH) sectors has doubled in size from previous estimations, and demand is on the rise.

Mencap, in partnership with Housing LIN, commissioned the ‘Funding supported housing for all: Specialised Supported Housing for people with a learning disability’ report, which revealed the findings. It’s estimated that there are between 22,000 and 33,000 specialised supported housing units, with the demand for properties likely to reach 25,500 to 33,500 by 2021/22.

Rent for SSH accommodation is usually higher, however the report also found it to be a cost-effective way of providing housing for those with complex needs. Similarly, living independently has a positive impact

8

on an individual’s wellbeing who may otherwise have been forced to live in secure accommodation.

The report highlights the growing need for SSH units with housing for people with learning disabilities projected to increase from 38,500 units in 2015 to 59,800 units in 2030 relating to increased population.

Discussing the findings, Beatrice Barleon, policy development manager at Mencap, says: “The Specialised Supported Housing sector has a crucial role to play in the Government’s transforming care programme, giving people with a learning disability the opportunity to live in their community and with choice over where they call home.”

“Until now we only had a limited understanding of the size of the sector, and this research shows that it is far larger than previously assumed, and at the same time cost-effective.”

“The Government must now ensure that Specialised Supported Housing is seen for what it is – a vital and cost-effective route to accessing a home in the community.”

www.enablemagazine.co.uk

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30/04/2018 15:24

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25/04/2018 10:18

What

Katie did next

BIG INTERVIEW

It’s been over a decade since the horrific acid attack by an ex-boyfriend, but Katie Piper hasn’t let it define her. Laura Hamilton caught up with the philanthropist about bringing up her daughters, confidence, and who inspires her

S

everal invasive operations later, including a full face skin graft to grow back all the skin on her face, Katie is thriving, happy and successful.

“Confidence is about empowerment,” she says. “It’s about valuing who you are, and only you can control that. It’s about finding the courage to live the life you want, the way you want. My best advice would be not to look for happiness in other people, but to find it in yourself.”

It’s not as easy as flicking a light switch, however. “It’s definitely an ongoing thing,” Katie says. “Everyone has insecurities and my life is in the public eye so I appreciate I am exposed to criticism. I just try to take my own advice and stay positive! I stopped giving myself a hard time for not being perfect and that helped me more than I can say. I still have therapy now: I think that’s a healthy thing.”

One piece of advice that stuck with Katie was from her surgeon: “I have an amazing surgeon who told me that worrying was the biggest waste of time. All worrying does is steal your joy and you waste a lot of time doing absolutely nothing at all. It’s so simple, but it’s true and I try not to waste my emotions on it.”

www.enablemagazine.co.uk

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CARE AND SUPPORT BIG INTERVIEW CHILDREN Family is incredibly important to Katie, who calls her mother her rock. “I am really fortunate to have amazing family around me giving me unconditional love and support,” she says. Katie was initially concerned about her chances of being a mother as the medication she was on while recovering could have affected her fertility, but she now has two daughters, four-year-old Belle and one-year-old Penelope with her husband.

As well as her busy career, charity work, Katie is also dedicated to her two daughters. “There are so many things I want to teach my girls as they grow up about life, relationships, what it means to be a woman in the modern world of social media and peer pressure,” she says.

“Naturally, as a mother, there is a lot I want to protect them from, but ultimately they need to live their lives - I just want my children to know that they are safe and that they are loved.”

Although her children are still young, her eldest has begun to notice that her mother’s skin is scarred. In a world where anxiety about our appearance is at an all-time high, Katie is leading by example and showing that confidence comes from the inside.

ONE WOMAN SHOW Ever since Katie took the decision to cast off her anonymity and capture her recovery journey in the Channel 4 documentary My Beautiful Face in 2009, she has been incredibly busy. “I wasn’t able to work for a very long time after my attack, so that drives me to work hard and I really value being healthy enough to be busy every day,” she notes. She’s a charity campaigner and philanthropist, and set up the Katie Piper Foundation (www. katiepiperfoundation.org.uk) which seeks to create a world where scars don’t limit a person’s future. The thirty-four-yearold has written several books, been in documentaries and presented tv shows.

Helping others is Katie’s MO. She has recently written a book with her mum, who is currently battling cancer, with coping strategies and personal anecdotes as well as advice on confidence and anxiety.

“I’ve always been pretty driven in everything I do,” says Katie. “I moved to London when I was 20 to pursue a career in modelling, and although it has been a journey and my career has moved on, I have always managed to find the motivation positive thinking to i FINDthrough OUT MORE keep driving forward in both my career Find out about the service at and personal life.” www.joincera.com.

Katie has always been a powerhouse of

12

ambition, and recently took to the stage in a one woman show called Katie Piper: What’s in My Head – her theatrical debut.

“I really wanted to put my experiences into context and talk openly with an audience sharing my own strategies and mechanisms to hopefully help others.

It’s also a wonderful chance for me to connect with people on a much more personal level. My hope is that I can help and inspire people the way I have been by other motivational speakers,” says Katie.

I stopped giving myself a hard time for not being perfect and that helped me more than I can say

From Mother to Daughter: The Things I’d Tell My Child, published

by Quercus, is available from all good bookshops and Amazon.

www.enablemagazine.co.uk

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26/04/2018 16:42

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25/04/2018 10:19

CARER PARTNERS

IN SICKNESS AND IN HEALTH Spending the rest of your life with the person you love is a wonderful adventure. However, when a spouse becomes disabled it can put a strain on the partnership. Lorne Gillies investigates how to keep your relationship alive in the face of disability

W

hether it’s newly acquired or a long-standing condition that existed before you met, disability shouldn’t be the defining factor of a relationship.

DYNAMIC Norman Phillips has cared for his wife, Ros, for the majority of their relationship.

After she was diagnosed with multiple sclerosis (MS) their relationship dynamic didn’t change until Ros’ condition began to deteriorate ten years ago. It was then that Norman became his wife’s full-time carer.

“Husband and wife becomes nurse and patient, carer and patient. I don’t think you ever learn to adapt,” he says. “It exposes all the weaknesses in both your characters and all the weaknesses in your relationship because you’ve got one person who needs all the caring and you become the person doing the caring.”

Going through life together is a rollercoaster and there are highs and lows in any relationship. However, going from partners to carer and cared for puts strain on the relationship and it’s worryingly easy to forget why you originally got together.

REACHING OUT Through the caring process, Norman and Ros have attended counselling to grasp onto the relationship they once had. This is not uncommon as counsellor Rachel Davies explains: “The person who is being cared for can sometimes feel quite guilty because they can see the impact that their illness has on their partner. On the other side, the partner who is doing the caring can sometimes do it in good faith, but

14

sometimes there can be some resentment as well – an idea of this isn’t what I signed up for.”

Norman adds: “Counselling got us out of the blame game, to an extent. It stopped us being self-destructive because that is what was happening. We were taking the anger out on each other verbally and that’s not a good place to be and you feel rubbish after because you’ve had a bad row.”

Unfortunately, Ros has become increasingly dependent on Norman as her condition progresses. No longer able to bathe herself or go to the toilet independently, it fell on Norman to assist Ros. Caring for someone full-time can test any relationship, no matter how much love is involved.

SUPPORT “Relationships that are flexible the person you love become and are able to adapt are a shadow of themselves the ones that can go due to an incurable You’ve got to the distance. Disability condition or disability is try and keep the or illness is going to heartbreaking – knowing relationship husband that person would be change things, but that and wife. I mean that doesn’t mean the end happy to pass away is of your relationship. It’s devastating. in a sense that about how you can make It’s not just Ros that is you’re partners your relationship flexible affected by her disability: enough to adapt,” says Norman’s health has also Rachel. been affected from his caring As Ros deteriorates Norman duties. Suffering from fatigue, has seen an effect on her mental health, depression and overeating, Norman too. “She keeps talking about wanting to has also been involved in two serious go home and by that she means dying. I accidents in the last six years highlighting find that very difficult because my brother the pressure that many carers are under. committed suicide so having a relationship Even so, one aspect of ensuring the caring with someone who wants to die is hard. It does not become overwhelming is to feels like rejection,” he explains. Watching remember that you are a team.

www.enablemagazine.co.uk

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27/04/2018 15:01

CARERS

CARERS WEEK 2018

PARTNERS “You’ve got to try and keep the relationship husband and wife. I mean that in a sense that you’re partners,” says Norman. “Even if one partner is carrying more of the load, you’ve got to try and maintain that sense of partnership rather than service user and service supplier, as therein lies resentment because you’re not getting paid for it. Talk through it, really talk, if you think you’re going down that route.”

Rachel agrees: “It is good to talk about your situation but don’t make it the most defining thing in the relationship.” Finding a sense of escape, even for several hours a week, can allow carers to regain their own identity. Many carers may worry about losing a sense of self due to caring responsibilities, and self-care should be a priority for everyone, regardless of care duties.

Norman gets support and respite by

volunteering in a museum once a month, alongside raising awareness for charities.

Volunteering has allowed Norman to find some time to spend where he doesn’t need to be constantly thinking about care and can have some fun.

“The partner that is going to be the carer really does need to develop something outside care,” he says. “I volunteer at the museum.

You’ve got to keep a life going. I can be me. I can have a laugh and a joke. I don’t have to think about incontinence pads or carers not coming when they should. It gives a sense of purpose and when you’ve done a job well done; you feel good,” concludes Norman.

Caring can be difficult at times, even more so when there is the threat of losing your partner.

Utilising counselling services to help you realise that you and your partner are a team can help to keep the relationship alive.

There are an estimated 6.5 million carers in the UK. During the week of 11 – 17 June 2018, Carers Week celebrates the hard work that carers do to support their loved ones.

Many carers often put their own wellbeing to one side resulting in their physical and mental health being impacted.

This year’s Carers Week is shining a spotlight on the health of carers with the theme: Healthy and Connected. You can get more information on staying well by visiting the Carers Week website on www.carersweek.org, or download advice guides on balancing relationships with caring via the Carers UK website on www.carersuk.org

i

FIND OUT MORE

Age UK 0800 055 6112

www.ageuk.org.uk

Relate 0300 100 1234 www.relate.org.uk

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30/04/2018 12:09

We provide a lifetime of support to soldiers, veterans and their immediate families.

Each year, we support a wide range of front line charities and specialist organisations, such as SSAFA, Combat Stress, Royal Star & Garter and the NSPCC, which deliver help on our behalf.

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Left to right: Siobhan Weller, Les Fryatt, Kenneth Kwogyenga – Charity beneficiaries

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25/04/2018 10:19

CARERS

TAKE A

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A

*ACCORDING TO CARERS UK

s caring is so important, it’s crucial you bring your A-game and that means making self-care a priority. It may feel counter-intuitive, but it will benefit everyone in the long run. Respite care is temporary care and can be an invaluable break for everyone involved. There’s no need to feel guilty that you’re leaving your loved one with strangers as respite care is always tailored to make sure that it’s a safe and welcoming environment. Whether it’s for an emergency, weekend breaks or a well-deserved two-week holiday, respite care is an option you can rely on.

ACCESS Jacqui Darlington is a full-time carer for her son Joshua, 30, who has Down’s syndrome and is on the autistic spectrum. Her respite care is partsubsidised through her local authority, and she gets a certain amount of respite which can be used for three hours a week or banked over the space of a month and used for a day or more over the weekend.

Jacqui receives direct payments which allow her an element of choice when it comes to arranging the personal

assistant who looks after Joshua while she has some time to herself. “I would recommend that other carers come forward for support in their area in order to see what help may be available to allow them to access a break,” she says.

There are lots of ways to access respite. Your local authority may be able to provide respite care for you.

To see if you’re eligible, you need to have a carer’s assessment, or the person you care for needs to have a carer’s assessment, in which a trained professional will ask questions about the affect caring has on your life. The other option is to go private and contact respite homes or respite carers directly.

“Joshua doesn’t go into a respite home or residential care, but he stays with a former teacher, who has now been his personal assistant for six years.

She knows him really well,” says Jacqui.

Coming forward for support from your local authority is really important.

“Some local authorities, like mine in Rutland, also have databases of information on personal assistants in the area which can help you pick the right care for the times when you’re having a break,” says Jacqui.

© PETER ALVEY

Caring can be more of an all-encompassing lifestyle choice rather than a job. It’s hugely rewarding, but it’s not 9 to 5. You don’t necessarily get weekends and evenings to yourself to rest.

There are 6.5 million carers in the UK* and they all deserve a break now and then

Jacqui and her son, Joshua

There are lots of ways to access respite. Your local authority may be able to provide respite care for you

www.enablemagazine.co.uk

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CARERS

in the end. It does pay off.”

LETTING GO It’s hard to relax and enjoy your time off, especially when you feel guilty you’re not caring for your loved one. You may feel caring is your responsibility, and it’s one you’re shirking for a few moments of self-indulgence. While guilt is a normal feeling to have, it’s not helpful or true.

Even though Joshua was going to stay with someone he has a long established relationship with, it was initially difficult for Jacqui to switch off.

“When Joshua first got respite care, I was very concerned,” recalls Jacqui. “It was the first time I had left him overnight with someone who wasn’t a family member. I went abroad with my friends for the weekend, who were also carers, but I was worried. I had every single possible contingency plan going in case anything went wrong, but it all turned out brilliantly!”

Jacqui advocates patience and preparation. “I definitely had reservations at first, but you need to persevere even if you’re feeling guilty or worried,” says Jacqui. “If something goes wrong the first time, or you get called up by the respite carer a lot because they’re new to looking after the person, it’s important to keep giving yourself a chance to access a break in spite of this.

It does eventually get easier for you, and for the carer looking after your loved one

SELF-CARE Like they say on airplanes, you have to put on your own oxygen mask before you put one on someone else. Looking after yourself is different for everyone – for many it might include a night out on the town, while others might prefer a lie-in. Remember that it’s your break, no one else’s. “My family often tell me to go out and do something during my break, but sometimes you have to rest and that’s fine, too,” says Jacqui. “I often just use the time to sleep. It’s your time, and if that’s all you want to do, enjoy it without feeling like you have to go wild!

Some people clean the house top-to-toe and others go to spa days: it doesn’t matter. You just have to address what your own needs are at the time.”

Jacqui loves caring: the best part of looking after Joshua is watching him achieve new goals and skills that she knew he was capable of. “Even simple things, like him being able to go to the shops can feel hard because you can see the dangers, but sometimes as a carer you need to let them experience these things,” says Jacqui. “The hardest thing, for me, is always having to judge his mood… You’re always looking to avoid negative reactions and encourage positive reactions, but that can be tiring which is why taking a carers’ break is so important.”

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The Soldiers’ Charity and respite care The Soldiers’ Charity is the British Army’s National Charity, helping soldiers, veterans and families from every conflict.

Last year, it awarded a grant of over £50,000 to Revitalise (www.revitalise.org.uk), enabling them to provide more than 145 disabled ex-service personnel and their carers with well-deserved holiday breaks.

Revitalise is a charity that specialises in providing respite support to people who need the reassurance of 24-hour, on-call, nurse-led care in order to have a proper holiday.

For more information, visit www.soldierscharity.org

PIC: © MALCOLM COCHRANE

You may feel caring is your responsibility, and it’s one you’re shirking for... self-indulgence

Sometimes it can be hard to find a PA. Agencies can be useful but they can often make the total cost of care more expensive as the fee on top of the hourly cost is sometimes between £5-10 extra and that can often price people out. “For me, word of mouth, through networks of support such as carers groups or my own friends, is a great way of finding somebody who can be trusted to look after Joshua,” says Jacqui.

i

FIND OUT MORE

For more information on carers’ breaks contact www.carersuk.org/break

www.enablemagazine.co.uk

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POSTCODE: TEL NO: 25/04/2018 10:20

WHAT HAPPENS WHEN I’M GONE?

Death is never a concept at the forefront of conversation, and it’s for this reason many people wait too long before getting their personal affairs in order. When it comes to being the carer of a disabled person you have to ask yourself a difficult question: what happens after I’m gone?

P

lanning for the future is an important part of life. However, many people across the UK don’t have any plans in place if they were to pass away before the person they’re caring for. According to research carried out by national charity Sense, 75% of disabled people and their families have no long-term support plans in place.

It’s uncomfortable to think about but there are only two things certain in life: death and taxes. When it comes to discussing death, it’s a topic that is often brushed under the carpet. Despite the upsetting issue it’s something that families really need to plan for.

guardianship issue; it’s almost easier to deal with because you can appoint a guardian and the law is very clear on that. If a person is over 18 it goes into two different situations: whether or not they’ve got capacity,” explains Elaine.

Disability has many layers and so does the legal process of care. For those who can live independently with their disability or condition, then they can make their own decisions on what happens to their care.

However, for someone who does not have the level of capacity to decide – and no long-term support plan has been put in place – the local authority has a duty of care. “Section 9 in the Care Act details that the local authority has to provide a needs assessment.

If there are needs, they Put a will in have a duty to meet those needs and they have to place, it’s the look after the wellbeing of absolute basic. individuals,” Elaine says.

“However, how that’s People will know done completely depends what you want on the facilities available.

The local authority will provide things for people, but it’s means tested.”

FUTURE CARE There are 1.7 million people who are supported by friends and family across Britain. A large majority of the general public is reliant, in some capacity, on someone else to survive.

Have you thought about what would happen if you were to pass away first?

Elaine Roche, partner at JMW Solicitors, has had first-hand experience of guiding family members through the legal process of care. The legal world can be a confusing area to manoeuvre and discussing emotional issues can prevent people from seeking help. But a lawyer is one way of ensuring a loved one is cared for.

“If they are under 18, then there is the

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LEGAL SUPPORT As with many disability issues, there is a postcode lottery in place. “The local authority does have a duty to provide care but they will provide the cheapest care, which is very rarely what a loved one would want for their family or friend,” adds Elaine. Planning ahead can ensure that a loved one will be cared for in a way that everyone is satisfied with.

However, when it comes to future planning and care, many people may not know where to go. Part of the problem could lie in the fact that one third of local authorities do not know the real extent of family and friends caring for a disabled person.

Elaine encourages families to start the conversation and find the relevant legal support for them. After one or two meetings with a lawyer many people will have a plan in place for a loved one, without any great expense. “Put a will in place, it’s the absolute basic. People will know what you want,” Elaine explains.

BENEFITS Alongside sourcing the relevant care, keeping on top of finances is important.

It’s common for carers to receive Carers Allowance but this support will end when the carer dies. For this reason, ensuring benefits and inheritance don’t clash is imperative.

Elaine says: “If you’ve put nothing in place and the person you care for is a member of your family then anything they inherit will get eaten up in care. Then they

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FAMILY

will have to go onto means tested care.”

Putting a trust in place means your loved one will not be forced to pay for their care out of their own pocket from the money you leave them. “If there is a disabled person that you’re caring for, or someone on means tested benefits, put a trust in the will so that their benefits are not affected but they can still have access to money,” adds Elaine. “That is going to make money go a lot further if you’re still getting your benefits and you get the extras as well. The idea of making financial plans for future care the earlier you start the better. It doesn’t need to be a huge amount of money if you start early enough and just squirrel away bits, it’s not hugely expensive.”

LOVE Legal matters to finance aside, there is one certainty that people want to know before they pass away. Who will be the person to care for your loved one?

Elaine says: “Anyone can get involved. If you’re planning ahead, mum and dad, or whoever, can decide who gets involved.

It doesn’t have to be any relative and even if no plan has been put in place and the person dies the local authority will get involved. There are always ways and means – it’s just planning ahead.”

It can loom over you, but no one wants to think about passing away. As Elaine concludes: “When you bite the bullet and do it, it’s not as bad as you think and there are things you can do.”

i

FIND OUT MORE

JMW Solicitors

www.jmw.co.uk 0345 872 6666

Sense

www.sense.org.uk 0300 330 9256

Mencap

www.mencap.org.uk 0808 808 1111

www.enablemagazine.co.uk

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LIFE

Money Money Money The hidden costs of disability With increased demand for services, the social care sector is having to evolve, and fast. We take a look at what’s going on in the sector

*ACCORDING TO SCOPE

H

aving a disability is expensive, but the work. For people who are in work, the average figures of how much extra people are monthly extra costs amount to £492, and for paying is shocking. Life costs on average unemployed disabled people it’s even more – £570 a month extra for disabled people*, and £640. that’s on top of welfare payments that are It’s an unfair financial penalty that people designed to meet those costs: a costly without disabilities don’t face – and often are powerchair, extra heating bills, adaptive unaware of. clothing and transport… it all adds up.

One in After housing costs, disabled CALL TO ACTION five disabled people spend 49% of their income Research by Scope found that on disability-related costs: almost disabled people are being penalised people face extra half of their salaries or benefits are when it comes to insurance and costs of more spent on managing their disability. services. While disabled people are than £1,000 a This leaves less money for other often underserved by companies and month essential items. The main things organisations, they also have to pay that disabled people are paying extra premiums for vital services. It can be include energy bills, clothing and bedding, anything from having to pay higher prices for specialised disability equipment, taxis and travel insurance to paying extra for an accessible private hire vehicles and insurance. These are all hotel room. necessities.

This is a clear opportunity for savvy The extra costs of disability don’t discriminate entrepreneurs and even big companies. For between people who are employed and those business owners with a disability, there is plenty who are underemployed or currently out of of scope to use their insider knowledge to bring

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LIFE more services and products to the market that fit people’s needs. Businesses should capitalise on the huge disability market and hopefully that will create competition and drive the prices down.

The government still has a lot to do to cement its commitment to the disabled community, and encouraging companies to provide better, fairer services to people with disabilities would be a step in the right direction.

THE PURPLE POUND The importance of the “purple pound”, as the spending power of people with disabilities is known, should not be underestimated. There are approximately 12 million people in the UK with a disability – one fifth of the entire population. That’s a huge market and disabled people and their families have considerable consumer power, and now is the time to use it.

With the rise of social media, disability has become more visible and people have become more vocal about the issues that concern them. While it’s unfortunate that the impetus falls on disabled people to educate and change how businesses treat them, it’s important for the community to realise its own power.

For example, the specialised equipment market is estimated to be worth over £720 million a year – it’s a huge industry.

THE RELUCTANT RETIREE Lynda spends a great deal of time in her wheelchair accessible vehicle attending numerous hospital appointments every two weeks, including 90 mile round trips. “I spend a lot on petrol,” she says. Her medication means she needs to go to the dentist every three months, too, and if she goes out of the house a PA or carer has to accompany her. “If where I’m going doesn’t have free access for my carer, I have to pay their costs,” says Lynda, who has had rheumatoid arthritis since childhood. These costs add up.

As she has so many expenses, Lynda has racked up lots of money saving hacks. One top tip involves going to Europe’s biggest disability conference Naidex, held annually in Birmingham (www.naidex. co.uk) every year. “The first time I attended I wanted to win the lottery.

There is equipment out there that could make me independent,” she says. It’s substantially cheaper to buy products at Naidex as there’s

THE STUDENT Students are usually cash-strapped, but as wheelchair user Piers knows, disability stretches student loans to the limit. He’s in his penultimate year at university in Wales and is in a huge amount of debt. “I’m running a deficit,” he says. “The cost of living increases each year. I knew it would be difficult: I come from a poor background, and I’m used to having no money, but I didn’t realise how hard it would be to be independent.”

His PIP was slashed as it was determined he could walk one step because he could fall out his wheelchair. “It’s demeaning,” says Piers, who had to resit a year after he was attacked in a pub and his left arm was damaged. His university staff are great, very accommodating and have an open-door policy. “But it’s hard to apply for the financial fund at the university,” he says.

Piers has had to rely on friends for money, and one even gave him £2000 to pay for his wheelchair. “I wouldn’t still be at university without them,” he says. While he has great friends, it’s hard to meet up with them when everything they plan to do costs him extra because he’s a wheelchair user and he can’t afford it. There are social costs to disability and poverty, too.

“It changes the way in which you want to live your life,” says Piers, who runs an access consultancy business called Ramp Me Up. He has an identical twin brother who is not disabled and is doing his PhD. “It’s like I have a direct comparison,” he says.

Piers is on the NUS executive council and is going to stand for election and hopes to affect real change for disabled students. “If I’m struggling, others must be,” he concludes.

24

often a discount. Lynda advises switching banks for the incentives and also informs companies she has a disability to see what services they provide at a discounted rate.

“You’re exempt from VAT on certain products” she says.

Lynda was advised by her doctor to refrain from her full-time work when she was 29-years-old, although she had part-time roles until 2009. “I was heartbroken and cried when I stopped working full time,” she says. “I had a very highly paid job; I sometimes wonder what my lifestyle would have been today if I hadn’t had to end full-time employment so young.”

Financial worries are a constant.

“You’re monitoring your medical condition and watching your expenditure continually,” says Lynda. “I don’t think the public are aware of how much disability costs. It’s not their fault, but the media make matters worse when it portrays people with disabilities as benefit scroungers.”

Join the conversation on Twitter with #ExtraCosts

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25/04/2018 10:22

VOICES

TIM RUSHBY-SMITH

Let’s talk kit

There’s a lot of equipment out there that could improve our lives and make us more independent, but it comes with a high premium. Why is being disabled so expensive?

W

hether it’s personal mobility equipment, vehicle adaptations, hearing aids, speech recognition software or home monitoring systems, we live in an age where technology is providing more opportunities for those of us with disabilities to participate more widely then ever before.

The tech may be very specialised, and often the innovation doesn’t create the same financial reward that more mainstream products can command.

As a result, the price can have way more noughts on the end than you would expect.

It can be hard to find the money to buy most of these products. There is a lot of kit that would have a significant impact on my everyday life, be it through

improvements to access or health and advertising a base price for a wheelchair well-being, but which are prohibitively that didn’t include wheels. I’m no expert expensive. on advertising standards, but isn’t that When considering how to spend my just a chair? hard-earned cash, I have to go through a The other frustration is finding everyday complex cost/benefit analysis for every items that are priced with the disability piece of new equipment, and that can premium. This was the reason why I be frustrating. However, it’s nowhere changed to 25” wheels on my wheelchair near as frustrating as when you visit some time ago. Instantly, I had a much an equipment supplier’s website and wider choice of tyres to choose from and almost inevitably discover two things. suppliers who offered them. As a former Firstly, prices on ‘big ticket’ items are avid cyclist, I also knew what tyres and impossible to find and you inner tubes should cost, and I was have to call for a quote. In appalled to find the same items the very rare event that doubled in price when sold there is a value, it’s through some companies I recently came usually a base price. that specialised in across a company I recently came mobility equipment. advertising a base across a company I understand that price for a wheelchair running a business can that didn’t include be tough, especially if your customer base wheels. I’m no expert on is relatively small. advertising standards, But reputation counts but isn’t that just a for a lot, and word of chair? mouth is usually the way that I decide where to spend my money. If we want to see improvements in the cost and quality of vital equipment, then I urge you to do the same.

Most importantly of all, if someone gives you good service or a great price, share your experience. Tell your friends.

Be a loyal customer. The best way to create change is to reward those who get it right.

Looking Up

by Tim Rushby-Smith is published by Virgin Books

www.enablemagazine.co.uk

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SUPPORT

O

ver 1.6 million disability claims are going to be reviewed over the next few years and the cost to the government is estimated at £3.7 billion. It’s a shocking waste of taxpayers’ money that could have been put to good use if properly allocated in the first place.

However, as the transition from DLA to PIP meant reassessment and stripped away many British people’s disability benefits, it can only be a positive thing that cases are going to be reviewed. Hundreds of thousands of appeals have already been made and many people have won back their PIP. It’s not easy to regain the benefits you’re eligible for and it may feel like the odds are stacked against you, but it is possible.

HOW TO APPEAL YOUR PIP Many disabled people have unfairly lost their benefits in the switch from Disability Living Allowance (DLA) to Personal Independence Payment (PIP).

Laura Hamilton investigates how to launch an appeal

PROBLEMS Donna Pickett has a host of health problems including PTSD, borderline personality disorder, chronic obstructive pulmonary disease (COPD), psoriatic arthritis and osteoarthritis, and lost her PIP last year. Her request to have the assessment at her home due to her mobility issues was initially denied, but the Department for Work and Pensions (DWP) eventually came to her home. Her PIP assessment came at a particularly stressful time as she was being assessed for suicide risk, but none of this made it onto her case notes.

“I suggest to anyone having an assessment that you have someone to back up what you’re saying because my assessor didn’t writing anything down about my mental health issues,” says Donna.

After her negative experience, Donna offers to take notes at other people’s assessments as she doesn’t want anyone to go through the same ordeal. “If you sign a form, you can also record the assessment,” she says, although she notes that the staff don’t encourage it. Top tip: most smart phones have a recording device on them – all you have to do is press a button.

Donna’s report came back saying she had lost her PIP, but it was full of inaccuracies of what was said and what happened during the brief assessment.

She went to the local council, where she was interviewed, and they suggested an appeal.

PREPARATION If you think you’ve lost your PIP unfairly, ask the DWP to take a second look at your assessment decision by requesting a mandatory reconsideration. “You have

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SUPPORT Be aware if you challenge a decision, it can make your PIP award lower or shorter Making an appeal can be hugely stressful. Donna couldn’t sleep for two weeks before her assessment or appeal, and was a week away from being made homeless. She had been unable to work and pay her bills during the six months without PIP and had been taken to court by her landlord for not paying her rent.

While she was back paid for the benefits she missed out on, the stress has taken its toll.

one month from when the decision was made to do this, but certain cases may be given 13 months in some circumstances,” says Carlos Hagi, welfare benefit expert at Citizen’s Advice (www.citizensadvice.org. uk).

Like with all things, it pays to be prepared. The case notes and papers that Donna gave the government in the lead up to her appeal were lost several times, so make sure that you have back-ups.

Donna says that the DWP expect a high level of drop-outs due to the distressing and time-consuming nature of making an appeal, so be persistent.

“It’s best to put your mandatory reconsideration in writing so you can explain in detail why you disagree with the assessment decision,” says Carlos.

Include supporting evidence, such as practical examples, medical records and supporting letters from health professionals. Submit this evidence separately if it’s not immediately available – and remember to keep copies.

A reconsideration involves a hearing, which you can prepare for by writing brief notes which you can refer to, or practicing questions in advance. In particular, think about how your disability affects your ability to carry out daily tasks and get 30

SUPPORT “My advice is to make sure you don’t do it alone,” says Donna. “Right from the start, don’t wait until you get to the assessment and let the DWP dictate your disability.

You know better than anyone, so make sure you state what your worst day is.

Don’t gloss over your concerns about yourself. There are fantastic DWP staff, but they have to follow what is pushed down from the top.” around.

You can attend the appeal by yourself, “At the hearing, the panel - which or can ask a Citizens Advice adviser (or includes a judge and doctor - will be a representative from another advice looking to better understand how your agency), friend or family member to disability affects your day-to-day life and accompany you. If you prefer, they mobility,” says Carlos, so expect to can even speak on your behalf. be asked a series of questions You should mention this on and be open and clear with Contact your your appeal form, but don’t your explanations. worry, you can also request nearest Citizens If your mandatory permission from the tribunal reconsideration is Advice if you need panel on the day of your unsuccessful, that’s not help at any stage appeal if you make a lastthe end of the line: you can of the process minute decision. make an appeal by going Donna advises against going to tribunal, which is what into your appeal without support, happened to Donna. First, fill and to be aware of how emotional it in the appeal form (www.gov.uk) can be. “If a disabled person doesn’t have which needs to arrive at the HM Courts mental health issues before going through and Tribunals Service within one month an appeal, they may do afterwards,” she of the date printed on your mandatory notes. reconsideration notice. Again, in certain The panel will inform you of its decision cases it may be possible to extend this up as soon as it can, and you will also receive to 13 months. confirmation in the post. If you win The appeal itself can be hard-going your appeal, the DWP will automatically emotionally. “Discussing your personal backdate the tribunal’s decision to the issues in front of people that you feel are date of your original assessment decision, there to judge you and not support you is so you will get all the money owed. If you difficult,” recalls Donna. “We’re not geared lose your appeal you will unfortnately to open ourselves to scrutiny about our only be able to challenge the decision if weaknesses. I cried the entire time and I the tribunal panel made an error of law. know others who have as well.”

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PROUD TO BE

Jack Whitfield

There are around 700,000 people on the autistic spectrum in the UK. In the wake of Autistic Pride Day, we look at the improvements being made in autistic representation

E

veryone on the autistic DIVERSITY spectrum share things Being proud of who you are can in common, but be the most difficult feeling this does not mean that to achieve in daily life, even all autistic people are the though it should be the same. Autism is defined as easiest. Leading charity for a lifelong developmental children and young people disability that affects how with autism, Ambitious people see the world – it can About Autism take a different Jolanta Lasota also affect how the public see approach to Autistic Pride Day. autistic people.

The charity’s chief executive, Jolanta Each year on 18 June, the autistic Lasota explains: “Autistic Pride Day is led by community, their friends, family, charitable people with autism themselves. It’s a great organisations, and more come together to day to showcase people’s interests, talents, celebrate autism. Autistic Pride Day puts and for autistic people to really be able to the spotlight on the autistic spectrum to tell people about their own experiences. showcase that all autistic people are unique It’s really important that the wider public in their own way. understands their experiences directly in

32

Integrating different perspectives and seeing autism much more as a learning difference rather than a learning disability

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PICS: © PAUL CARTER; CHANNEL 4

SPOTLIGHT

their voice.”

Working to promote the individual experiences of autistic people, Ambitious About Autism runs a youth council for those aged 16 – 25. Members of the council discuss and plan campaigns, events and consultations to promote the word of those on the autistic spectrum. The youth council has already had great success in encouraging pride.

“I’ve seen a lot of people changing Autistic Pride to Autism Awareness on social media and that’s what it is about: integrating different perspectives and seeing autism much more as a learning difference rather than a learning disability,” says Jack Whitfield, an eloquent and intelligent young man who is a member of the youth council. Diagnosed with autism around ten years ago, now at 24, he’s an advocate for autism.

Jack also sees Autistic Pride Day as an opportunity to encourage autistic people to speak out. “We’re making the event our own: it’s not as much a sense of we need to expose ourselves so people know who we are, it’s much more an opportunity to really step forward and say this is what we need.”

ONSCREEN

The theme for Autistic Pride Day will continue to focus on women and

autism on the back of the Channel 4 documentary Are You Autistic? After being aired in April, the documentary was highly praised – all thanks to the youth council.

After discovering Channel 4 was making a documentary (with a working title of How Autistic Are You?), the youth council contacted the team with concerns on the title. This in turn resulted in Channel 4, not only changing the name of the show, but also its attitude, outlook and the basis of the documentary. The finished programme saw youth council members Sam Ahern and Georgia Harper present the show with a collection of insightful and empowering interviews from autistic people.

“It’s a real example of how young people and autistic adults can influence the environment and how receptive the media is to changing attitudes,” explains Jolanta.

“Nothing beats seeing somebody autistic achieving something like presenting a programme, speaking about autism and changing people’s attitudes. It’s really important for young autistic people to be able to see those people and feel inspired and build their own confidence – I think it destroys a lot of myths for autistic people and non-autistic people.”

Jack also appeared in the documentary and praised the final result. “I was really proud in a sense to be part of a documentary that really fought the corner for autistic women. I’ve had a number of friends who are being diagnosed or on the spectrum who felt very trapped and i

isolated, almost being expected to behave in a way that is unnatural to them,” adds Jack. “For the female autistic movement, it’s a real huge step and I think being able to show what you can do by putting this huge minority in the driver’s seat, as it did, is quite exciting.”

FEMALE VOICE

Encompassing pride by being your authentic self is one of the most important aspects of Autistic Pride Day, which celebrates autistic women. The female population is increasingly underrepresented in the media and in day-today life, but due to the unity between the documentary and celebrations on 18 June, autistic women have a new platform.

Jolanta concludes: “The programme gave a platform to women’s voice. I think for members of the public, for many of them it will be the first time they will have seen women talking about autism.

We’re really proud that our youth patrons Sam and Georgia actually presented the documentary – they were at the forefront.”

Gradually more awareness is in place for the autistic community and the general public. The power that one day, or even one documentary, can provide for a group of people who may feel marginalised against is a force to be reckoned with.

Be proud to be different: whether that is different hair colour, quirky fashion sense or being on the autistic spectrum.

FIND OUT MORE

Celebrate with Ambitious About Autism on Autistic Pride Day, 18 June 2018.

Find out more information at www.ambitiousaboutautism.org.uk

www.enablemagazine.co.uk

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30/04/2018 09:12

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DISABILITY

YOUNG PEOPLE

MENTAL HEALTH

HOMELESSNESS

At Sanctuary Supported Living we provide supported housing, move-on accommodation, CQC registered services, including residential care and nursing homes, and floating support. We specialise in services for young people, people with physical and learning disabilities, people with mental health needs and acquired brain injuries, and homeless families and individuals.

Our personalised care and support services enable people to identify their goals and aspirations, setting them on their pathway to independence.

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30/04/2018 14:19

LIFE

YOUR NEW ROOMIE As the housing crisis in the UK worsens, homesharing has become an attractive option for people who are priced out of expensive rental homes. And for disabled homeowners, it can be a boon

H

omesharing can be more appealing than becoming a landlord as it’s designed with companionship and friendship in mind. It matches you with someone younger who has similar interests, who can provide around 10 hours a week in household support and has been professionally vetted. You’re not opening your home to a stranger who will treat your house like a hotel – instead you’re encouraged to get to know each other before the move in date and become friends.

It isn’t just for people with disabilities: homesharing is open to anyone who is retired and a homeowner, but it’s ideal for someone who may be considering assisted living, but wants to stay in their own home.

It’s mutually beneficial – the homeowner gets someone new around the house who can offer much needed company and help with the housework, and the tenant gets to pay reduced rent.

FRIENDSHIP Felicity, 53, retired on medical grounds in the early ‘90s and has ME. She doesn’t leave

the house often and has shared her home if there is an emergency with Felicity’s carers. for the last five years with Bongi through “The homeshare has definitely added to London-based homesharing agency Felicity’s quality of life,” says Janet. “There Novus Homeshare (www.novusare no cons in our experience.” homeshare.org.uk).

As for Bongi, living in London “Felicity and Bongi have for less than £200 per month a great relationship,” says puts her well below the You’re not Felicity’s daughter Janet. rental average. Monthly opening your home “They’ve become good rent for a one bedroom to a stranger who friends, and have a good flat in the capital can hit laugh together about heights of over £1,200. will treat the house things. Bongi usually “From the like a hotel spends time with her three householder’s point of evenings a week, and also view,” says Janet. “I’d say be does gardening for her at the as clear as possible about what weekend. Bongi has her own you would like the homesharer to separate space upstairs including a do, the role you’d like them to play. But bedroom, living room, bathroom, WC and then also be prepared to let the arrangement kitchen, whereas my mum’s accommodation evolve as you get to know one another.” is downstairs. It works well that they both have personal space, as mum can’t cope with having too much interaction,” explains Janet. i MORE INFORMATION For Felicity, having someone sleeping in To find out more about homesharing the house overnight makes her feel safe, as and to find a scheme in the UK, she feels vulnerable in the house by herself. visit www.homeshareuk.org And Bongi, a trained social worker, is on hand

www.enablemagazine.co.uk

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27/04/2018 15:55

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We are a dedicated and specialist team, committed to making the process as straightforward as possible.

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Healthcare

036_EN_MJ18_ADV.indd 36

25/04/2018 15:52

LIFE

ON YOUR The brain is an incredibly complex organ. It’s our body’s supercomputer, controlling every aspect of what we do

B

reathing, kicking a ball, digesting food, pulling your hand away from a hot pan, reacting with emotion when you hear sad news… You can thank your brain for all these things. So when something goes wrong, it can have devastating effects.

Brain injury can happen at any time, to

anyone. Acquired brain injury (ABI) happens after birth and can be traumatic – caused by a road traffic accident, assault, or sports injury for example, or non-traumatic – brought on by tumours, stroke, infection or carbon monoxide poisoning, to name a few causes.

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27/04/2018 15:56

LIFE

COMPLEX CONDITION

Because the brain is so complicated, the impact of a brain injury is often complicated, too. When pop star Marc Almond OBE had a motorcycle accident in the early 2000s, he spent two years rehabilitating, which included learning how to sing again. For champion rower James Cracknell, his brain injury – caused after he was hit by a truck while on his bike – has led to changes in his personality, a loss in sense of taste and smell, and the onset of epilepsy. From speech and vision impairment to depression, tremors, fatigue and memory loss, the after effects of a brain injury can be as complex as the organ itself.

The impact of a brain injury extends beyond the injured person, having an effect on loved ones as well. In Touching Distance, a book written by Cracknell and his wife, the couple revealed that he had even become violent towards her at one point, owing to extreme changes in his personality. The shift in relationship dynamics and complex repercussions of ABI can challenge couples, with research finding that in marriages where one partner has had a brain injury, the divorce rate can be between 48% and 78%.

SEEKING SUPPORT

However, the understanding of brain injury and the interventions used to treat and support those with it are advancing all the time. Headway, the Brain Injury Association (www.headway.org.uk), offers all sorts of help, such as a network of local branches across the UK, a national helpline, information resources and day centres, while Headway acute trauma support nurses (HATS nurses) work across the country helping people with acquired brain injury and their families.

HATS nurse manager Mandy Haughton explains: “Our role is in providing emotional and practical support, advice and information to patients and family.

Patients encounter many different staff, so our nurses offer continuity – from critical care to rehab and beyond.” The nurses also help with practical issues, such as power of attorney and benefits. Mandy thinks the biggest misconceptions about brain injury centre around the fact it’s a hidden disability. “People don’t really understand what the effects of a brain injury are,” she says. “You look unchanged, but actually there’s an awful lot going on that others can’t see. It can have quite a devastating impact on the individual.”

SUPPORTING CHILDREN WITH BRAIN INJURY

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Because the brain is so complicated, the impact of a brain injury is often complicated too A LONG JOURNEY

Scientists are learning every day about the brain and how it works. It can be a steep learning curve when it comes to ABI for both medical practictioners and patients.

So what advice would Mandy offer to anyone who’s recently had a brain injury, or their loved ones? “Listen to your body and try not to fight it because fatigue can be an awful problem,” she explains.

“For the family, communication is a vital part of the journey – understanding what’s happening and why, having those conversations with multidisciplinary teams or seeking help so they can support each other through that journey. It’s going to be a long journey. You need to take it one day at a time.”

Tyler Manley, a 13-year-old from North Yorkshire, was diagnosed with a brain tumour in September 2013. After surgery, chemotherapy and radiotherapy, Tyler was doing well and returned to school, although she was left with a serious brain injury. As she moved to secondary school, her difficulties with memory, fatigue, concentration and balance became more apparent.

She felt increasingly isolated and was quickly losing confidence. Tyler was supported in secondary school by The Brain Injury Community Service, who ensured she received the right assistance in class and input from local therapy teams so she could continue to improve.

Tyler and her mum feature in a special film by The Children’s Trust, appearing as illustrated characters accompanied by a personal recording of their experiences.

The Trust is the UK's leading charity for children with brain injury and neurodisability, and aims to help children with brain injury get the support they need in their community. The video explains how the Brain Injury Community Service, delivered by The Children’s Trust, offers children with acquired brain injury free clinical screening, advice and onward referral after they have been discharged from hospital and at key stages of childhood.

It’s hoped that the short film will help children and young people experiencing similar difficulties.

Watch and share the video by visiting www.thechildrenstrust.org.uk/BICS

www.enablemagazine.co.uk

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27/04/2018 15:57

The Children’s Trust

Our ultimate goal is to maximise the child/young person’s participation in their everyday life

Brain Injury Community Service

We provide a range of support centred around the child or young person, including clinical screening, advice and onward referral completely free-ofcharge for children and young people with an acquired brain injury, including those with a concussion. Subject to funding we also offer community-based neurorehabilitation skills packages delivered by our multidisciplinary team.

Supporting children and young people with acquired brain injury in the community

The Children’s Trust is the UK’s leading charity for children with brain injury. We work with children and young people aged 0-18 from across the UK with acquired brain injury, neurodisabilities and complex health needs delivering rehabilitation, education and community services through a highly skilled team.

Our Brain Injury Community Service provides goal-orientated rehabilitation delivered in the child’s environment.

This service provides the initial support needed when a child is discharged from hospital to home and can also be accessed after an initial injury or illness which, in some cases, can be many years later. This may be because the effects of the injury may not be obvious for some time.

Making a referral is simple and can be made by anybody involved in the child’s care. www.thechildrenstrust.org.uk/bics bics@thechildrenstrust.org.uk 01737 365 864

Delivered by specialists from a range of clinical backgrounds, we work with the child and their family focusing on the needs which result from an acquired brain injury. These may be social, emotional, cognitive, communicative and behavioural needs.

Registered charity number 288018. TCT_321 BICS March 2018.

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15/02/2017 11:32:52

30/04/2018 12:33

COMPETITION

WIN A BREAK AT BLAGDON FARM We’re offering a four night stay at the beautiful Blagdon Farm in a lodge that can sleep up to four people for one lucky winner. Enjoy a staycation in a fully-accessible luxury, lakeside lodge in the Devon countryside

HOW TO ENTER

To be in with a chance of winning, send your name and contact details to competitions@ dcpublishing.co.uk quoting Blagdon Farm. All entries must be received by 31 July. Good luck!

B

lagdon Farm has eight purpose-built fully-accessible lodges set in over 10 acres of peaceful Devon countryside within easy distance of both the coast and Dartmoor.

Every lodge faces south with a private terrace overlooking the fishing lake and magnificent views to the rolling countryside beyond. All facilities have step-free access, extra wide doorways and roll-in wet rooms. Heating, hot water, electricity, Egyptian-cotton bed linen and towels are included and there is a range of mobility equipment available for hire.

Blagdon Farm is the perfect gateway destination from which to explore both Devon and Cornwall, set in the heart of Ruby Country.

It offers a range of on-site facilities to enhance your holiday, including an indoor heated swimming pool with hoist and steps for ease of access (open from Easter until the end of October).

If you like fishing you’re in luck. There is a 1.5 acre coarse fishing lake, stocked with carp, rudd, roach, perch and bream. There is a fishing shack selling bait and hiring out angling equipment for any keen fishers. For those who enjoy a stroll, there is also a grass path, stoned underneath, leading down to the lake.

Otherwise, there is plenty to keep you occupied, from a games room with Xbox, book and DVD library, snooker, fussball and table tennis. The beautiful countryside has a playing field and woodland walk. Three lodges (Curlew, Chaffinch and Kestrel) are dog-friendly and there is a dedicated field where they can be let off the lead, so you can even take your puppy on holiday.

i

FIND OUT MORE

Blagdon Farm is a small family-owned business where guests are welcomed with a locally-sourced complimentary Devon cream tea. For more information check out www.blagdonfarm.co.uk

TERMS AND CONDITIONS: All entries must be received by 31 July 2018. The winner is entitled to a four night stay at Blagdon Farm in any lodge sleeping up to four people. The prize is subject to availability and cannot be used in school holidays. The prize is non-transferable, non-refundable, there is no cash alternative and cannot be sold to another party. One entry per household. The publisher’s decision is final.

40

www.enablemagazine.co.uk

040_EN_MJ18_Comp.indd 40

27/04/2018 12:38

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30/04/2018 12:29

The

of diag is nos Receiving a diagnosis of multiple sclerosis can be life changing. It’s a condition that requires a process of trial and error. We speak to two women about their journey since diagnosis and what they have learned

D

isability affects people in various ways. Symptoms that may be debilitating to someone may be bearable to another – it’s all relative.

One condition that regularly lives in the grey area is multiple sclerosis (MS).

Across Britain there are more than 100,000 people living with MS – all of varying ages with their own trials and tribulations, achievements and experiences. Receiving a diagnosis can, in a dark sense, be a relief as many people will have experienced symptoms for years prior. Even so, it is a condition that can be terrifying with uncertain times ahead.

JOURNEY

Hollie Highland was in her early 20s when she was diagnosed. Now 26, Hollie’s only experience with MS prediagnosis was seeing her grandfather with the condition – who had been bedridden for over 30 years.

“It was a long and very difficult journey, taking two years to finally get my diagnosis. As crazy as it sounds, I was desperate for [the consultant] to tell me that I had MS. Not because I wanted this horrible disease but because this meant I could start on the right treatment to control this and help me get my life back. I lost control of my body and my mental health and I was so ready to kick arse and get myself back,”

42

recalls Hollie.

Helen Andrew also didn’t know much about MS before she received a diagnosis. “Eight years ago I was diagnosed: it was a bit of a rollercoaster.

I don’t think it really sinks in to start with. It feels strange and surreal. I don’t know how to explain it – a bit like grief,” says Helen. “You go through a happy stage, you go through a sad stage, a frustrated stage but I can honestly say now – the last three or four years – I’ve been incredibly positive and I live for now.”

Through their respective experiences both Helen and Hollie have adapted their way of life in a bid to secure a sense of self. In a way, going into any diagnosis can turn your life upside down, but it is also an opportunity to learn more about yourself and gain experience from others.

RESEARCH

Everyone has heard of MS in some capacity. Understanding what actually happens post-diagnosis is a crucial step forward to acceptance. The central nervous system in our bodies is a complex and intricate organism and myelin is the root of all MS symptoms.

Myelin protects nerve fibres allowing messages and signals from your brain to travel throughout your body smoothly and efficiently.

People living with MS have (in a sense) a confused immune system which attacks the myelin thinking it’s a foreign body; ultimately resulting in damaged nerve fibres. It’s a complex condition that still has many questions attached from professionals and MS patients.

Research is a big part of diagnosis.

“I researched on the internet to try and understand how MS affected the brain and myelitis,” says Hollie.

However, sticking to her own experiences was the road that works for her, as she adds: “I never really tried to see other people’s experiences as I understand that everyone is different; I was also too afraid to discover what they might have had to live with.”

Helen agrees with Hollie’s methods, advising: “I’m quite a calm person and I don’t look into things too much. I use medical professionals because they’ve been educated and I think you’ve got to be so careful. Sometimes, not knowing can be better for you.”

COPING MECHANISMS

With any disability or condition – especially MS – finding coping mechanisms that work for you will result in an improved quality of life. As an incredibly creative person, Hollie feared post-diagnosis she would never be able to draw or paint again due to physical and mental pain. She says: “Finishing

www.enablemagazine.co.uk

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27/04/2018 16:04

LIFE

a piece is currently one of the most rewarding thing I can do,” and finding methods on how to alleviate pain have helped.

Hollie does yoga and Pilates to reduce symptoms, alongside not trying to fight fatigue – she is a self-confessed nap queen. Helen, who works as a shop assistant in a boutique store, believes strongly in the power of the mind: seeing MS as a dragon that she is continually battling with a sword. Similar to Hollie, Helen knows the importance of acceptance and not being too hard on herself. Focusing on times ahead in a positive light will help on the dark days.

“Try to look to the future. We’re so far ahead with technology now and medicine that I hope one day there is a cure; or at least something that can slow it down. Things can only get better. Try to keep positive, but I do realise it is very, very difficult. I’m not saying this lightly, or dismissively, it is very difficult and I understand that,” concludes Helen.

As they say, every day is a school day and learning from others or doing your own research, you can hopefully find a coping strategy that works for you.

KNOW THE SIGNS Multiple sclerosis causes a wide range of symptoms and affects different parts of the body. Everyone can experience MS differently and symptoms are unpredictable.

Some of the most common symptoms include, but are not limited to: • • • •

Fatigue Vision problems Numbness and tingling Muscle spasms, stiffness and weakness

• • • •

Mobility problems Pain Depression and anxiety Issues with thinking, learning and planning

Many of those living with MS only have a couple of symptoms. If you experience some of the symptoms be sure to see your GP as they can be similar to other conditions.

For more information on symptoms and diagnosis make sure to visit the NHS: www.nhs.uk/conditions/multiple-sclerosis

Try to look to the future. We’re so far ahead in technology now and medicine that I hope one day there is a cure

i

FIND OUT MORE

MS Society

0808 8008 000 www.mssociety.org.uk

MS Trust

0800 0323 839 www.mstrust.org.uk

www.enablemagazine.co.uk

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27/04/2018 16:04

LIFE

DOWN MEMORY LANE WITH

The Dementia Barber

I love interacting with them and finding out who their families are, if they have any kids, if they have any family left – you’re making them feel special

The barber sign sits outside, retro images hang from the walls, hot towels are waiting to be used, the smell of lemon cologne fills the room and the jukebox comes to life – welcome to the dementia-friendly pop-up barber shop

O

ne day in November 2016, Kingsland Care Home in Bangor was transported back to the 1950s for the first time. As Frank Sinatra and Dean Martin played on the jukebox, Lenny White provided a barber service for the gents living with dementia.

RELAX “It is all about making people feel at ease and comfortable,” explains Lenny, Ireland’s first dementia-friendly barber. After leaving the fast-paced life of sales to retrain as a barber, Lenny paired his previous experience of working in a care home and his new qualification together.

Noticing that many activities within the care industry were targeted more to women, Lenny wanted to give the gentlemen a chance to unwind.

“Whenever people start coming into the room they are getting all the sensory feelings first: the smell, visually they can see the barber pole, and they can relax and sing along to the jukebox,” Lenny explains.

“The music relaxes some clients, they’re going to start tapping their feet, they’re going to remember the songs, I can dance with them and have a bit of craic.”

MEMORIES Dementia is a difficult illness, which can see patients lose their most treasured memories. Through Lenny’s service many dementia patients are getting a chance to go back to their youth and share their stories.

“You get talk about the Second World War where they remember the German’s coming overhead; some had amazing jobs in the police, barristers, running businesses. I love interacting with them and finding out who their families are, if they have any kids, if they have any family left – you’re making them feel special; especially those who have no family,” adds Lenny.

DEMENTIA FRIEND Having completed a Dementia Friend course with the Alzheimer’s Society, Lenny has advanced his knowledge of the condition and uses his training within his pop-up shop.

“You have to tailor it – if someone gets agitated I will calm them down, sit them down and keep them calm. Let them know it’s OK and I’m their barber,” explains Lenny. “I’ll show them my

clippers. If I put the black cape around them they might see it as a black hole depending on their level of dementia so instead, I will use a white towel. There are many techniques you have to use and each one is tailored to each person.”

Working with people living with mental health conditions, learning disabilities and stroke survivors, dementia is not Lenny’s only area of expertise. Providing a safe and trusting environment is key to clients getting to look and feel good, Lenny is just adding extra flair to the service.

i

FIND OUT MORE

For more information on dementia visit the Alzheimer’s Society, www.alzheimers.org.uk or call 03002 221 122

Read our full interview with Lenny on the website, www.enablemagazine.co.uk 44

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26/04/2018 16:19

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25/04/2018 15:53

FINDING THE WORDS Discussing mental health openly and honestly is still a challenge for a lot of people. Not admitting, or even accepting, that you are experiencing poor mental health can have detrimental effects. How do you find the words to ask for support?

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30/04/2018 09:14

SUPPORT

M

ental health affects everyone and two thirds of people will have a mental health problem at least once in their lifetime. There are many different forms of mental health conditions from depression, bipolar disorder, anxiety, schizophrenia and more. Each condition affects a person differently.

Mental health may not be visible, but it can still be debilitating. Receiving the correct support and advice is crucial, unfortunately, asking for help can be a problem for someone struggling.

DIAGNOSIS

Each year 16 million people experience poor mental health. However, the misconceptions still tied to mental health conditions result in many people not seeking the relevant assistance.

“Asking for help is one of the most important things to do if you feel like you’re experiencing a mental health problem. Confiding in someone you trust is the first step in accessing help,” explains Emily Waller, policy and campaigns officer at Mind.

When experiencing a mental health problem, it can seem like going to the doctor is the biggest hurdle in the world. In fact, it is the first step towards diagnosis and support. Emily continues: “You might want to speak to someone if you’re increasingly worrying about things you didn’t used to, you’re finding it difficult to sleep, don’t enjoy the things you normally would, or if you’re having thoughts that are difficult to cope with, and this is having an impact on your dayto-day life.”

Discussions on mental health are gradually becoming more prominent.

In England alone, one in six people report experiencing either depression or anxiety, and hearing how others have achieved in the face of adversity can aid in their recovery.

PUBLIC IMAGE

“We know that there is still a huge stigma around mental health problems, which are often misunderstood. Symptoms of mental health problems are often invisible, despite being potentially debilitating, and even life-threatening.

People speaking out about their own experiences of poor mental health helps decrease stigma, increase awareness and normalises these lesser-

struggling under the increasing weight understood conditions,” Emily explains. of care.

“It’s important that people from all Emily says: “For too long, those of backgrounds and walks of life open up – us with mental health problems have including high profile individuals.” struggled to access the quality services In recent years many more celebrities, we need. Mental health services have or well-respected individuals, have been underfunded and ignored for revealed their own struggles and decades and access to them has never triumphs with mental health. Whilst been, and is still nowhere near, what being open about their experiences, we take for granted in other parts of they have also explained their journey to the NHS; only a third of people with recovery, which can be an alien concept mental health problems get any kind of to someone who is in the depths of poor treatment or support at all.” mental health fearing the reaction to In a bid to improve care the speaking out. government has recently accepted Many of Mind’s ambassadors recommendations made within have been candid about the Five Year Forward View their experiences. Frankie for Mental Health plan Bridge, former The – a report from the Saturday’s band Asking for help independent Mental member, looked as is one of the most Health Taskforce to though she was important things to the NHS in England living the dream on do if you feel like – to contribute £1 the outside: always billion of investment glamorous, going you’re experiencing to improve facilities. on tour, meeting a mental health With improved adoring fans, and problem services, more people in an exciting new will have access to relationship with now support, similarly, Mind has husband, footballer Wayne a campaign guiding people to Bridge. In reality, Frankie was find the confidence to go to the doctor. in crisis.

When we have a physical ailment our Speaking in 2012, Frankie revealed GP is the first point of call. However, that she had struggled with depression too many of us lack the confidence to for more than eight years, ultimately speak about our darkest emotions to being hospitalised at the end of 2011. loved ones, let alone a doctor. With one Prior to her diagnosis of depression, third of all GP appointments relating to Frankie had lived her life in secret since mental health it’s time to stop hiding the age of 15. Not divulging how she was and seek advice. feeling to her bandmates, or even family Medical support can be crucial in members, meant Frankie’s illness had instance of severe mental health issues. control over her.

Finding the words to go to the doctor, She said at the time: “One night, I got or even to a close friend or family upset because Wayne hadn’t bought the member, is the start of a journey to right yoghurts; I managed to convince recovery. myself that he didn’t know me at all. It set off this spiral of negative thinking – that if I disappeared, it wouldn’t matter to anyone. In fact, it would make i MORE INFORMATION everybody’s life easier. I felt that I was MIND worthless, that I was ugly, that I didn’t www.mind.org.uk deserve anything.”

0300 123 3393 or text 86463

MEDICAL ADVICE

After receiving medical attention, Frankie managed to get out of the metaphorical black hole. Seeking medical advice can be difficult and many people don’t know how to find the right words to ask for help – especially from professionals.

Even so, many professionals are

MENTAL HEALTH FOUNDATION

www.mentalhealth.org.uk

SAMARITANS

www.samaritans.org 116 123

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30/04/2018 09:14

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SPOTLIGHT

R

esearch on disability and LGBTQ+ has previously centred on adults,” explains Dr Alex Toft, whose work at Coventry University focuses on giving young disabled LGBTQ+ people control and agency on the issues and concerns that they face. Although there is an increased awareness of the LGBTQ+ community in the classroom, Alex has found that young disabled people are being left out the conversation when it comes to sexuality.

*NOT REAL NAMES

IGNORED Disability and sexuality are already taboo subjects for many, and Alex found that young people felt they were treated like they should be non-sexual. Being ignored and discriminated against (whether through violence, micro-aggressions or being excluded) was an everyday occurrence for many.

The sex education pupils receive in school across the UK tends to be heteronormative – meaning that educators only include straight experiences and information – and it focuses on biology

You often can’t hide disability, but you can choose not to show your LGBTQ+ identity

WHAT ABOUT US? It’s challenging enough to be a young person navigating through the world without being ignored and discriminated against, but that’s the reality for many young people who identify as disabled and LGBTQ+

and reproduction rather than relationships and sexuality. Young disabled people believe (whether rightly or wrongly) that the LGBTQ+ community isn’t open to them due to their disability. They feel there is nowhere for them to go.

Many feel they have to disguise that part of their identity. “You often can’t hide disability, but you can choose not to show your LGBTQ+ identity,” says Alex. “For young trans people, it’s more complex because it’s visible, so they go into “stealth” mode, hiding part of themselves for safety reasons.” As transphobia is on the rise, young disabled LGBTQ+ people feel increasingly uncertain about their future.

Being visibly disabled and LGTBQ+ can mean that there is a target on your back.

Abigail*, 19, has been physically attacked on the street several times and has contemplated suicide. It’s no wonder that people feel the need to hide their sexuality.

Alex has found that while parents can be supportive about disability, they may see coming out as a phase and not accept it.

There is no refuge, even at home.

RISK Not being part of a community and being left in the dark regarding the issues that face them can be dangerous. Many disabled LGBTQ+ young people are at risk – and not just from discrimination and violence. “If you see people as nonsexual beings and you don’t give them information, it can lead to them making risky decisions as they explore their sexuality without any guidance,” explains Alex. “We need to stop desexualising disabled people,” he says.

Overprotection or treating a disabled person coming out as a phase means that their sexuality is not valid – and they’re not being taken seriously.

Clearly a lot needs to be done to change perceptions of sexuality and disability.

i

USEFUL CONTACTS

LGBT Foundation www.lgbt.foundation 0345 330 3030

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26/04/2018 16:21

MIND THE GAP

Public transport is a lifeline for people with disabilities, but it doesn’t come without its difficulties

K

“

ika’s my first guide dog,” says Amit Patel, who lost his sight a few years ago. “Everyone always says that having a guide dog is life changing and I was sceptical at first, but it’s true.

She gives me my independence back, and takes the pressure off.” Kika takes Amit all over London on public transport: previously he navigated the UK’s capital with a white cane, but has new found freedom with hardworking Kika.

But it’s not all easy going. Earlier this year, Amit hit the headlines when a video emerged of an angry commuter trying to push past him on the escalator in the London Underground. Shocking though it is, it wasn’t the first time that a fellow passenger had behaved aggressively towards Amit, who has been blind for five years, or his guide dog.

When Amit first got Kika two and a half years ago, she would occasionally stop when they were travelling around the city.

According to the British Transport Police, disability hate crimes are decreasing 50

He assumed she was getting her bearings, but he was alerted by fellow commuters that his dog had just been hit by a fellow commuter. Astounded, he attached a Go Pro to Kika to monitor the situation, so he could show the video footage to other people as proof he and Kika were targets on the underground.

Harassment and violence are sadly commonplace on public transport, however according to the British Transport Police, disability hate crimes are decreasing. It just takes one bad experience to traumatise someone, Follow however. Amit finds that people often Kika on Twitter pretend not to see him, will push past @Kika_GuideDog him to get on the Tube or the bus and won’t give up seats reserved for disabled people. As you can imagine, it happens more often during the early morning commute to work and people are more relaxed and helpful in the afternoon and evening.

The Tube isn’t full of rude people though: Amit says that he does meet lots of truly lovely people who tell other commuters to hold on and let him board the tube first, who give up seats if he needs to sit down. “The easiest thing is just to ask and approach someone who might need help,” says Amit. “If I look like I need help, I probably do.”

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SPOTLIGHT

ACCESSIBILITY Losing his sight hasn’t stopped Amit from getting out and about, and he even takes his baby son with him. “I have a nine month old son, and I usually carry him around in a chest harness or sometimes in a buggy with Kika,” says Amit.

Trains and undergrounds aren’t as accessible as they should be, although Transport For London (TFL) has made a renewed commitment and is on the right track. “Honestly, London is a nightmare,” says Amit. Staff are supposed to set up a ramp to board trains, but often fail to show up or are late. It means that if you have a disability, you have to factor in extra time into your journeys – sometimes hours. It’s frustrating, but progress is happening.

Part of the problem is that the London Underground is hundreds of years old, explains Amit. There have been lots of advancements in recent years that have improved accessibility for everyone. “The TFL is improving,” he admits. For example, people with audio impairments rely on announcements on buses and trains.

Otherwise, Amit has to rely on bus drivers telling him where he is and where to get off.

Without public transport many people would be housebound, priced out of

BUS LIFE While people often complain that bus drivers don’t stop if they see a wheelchair user waiting at the bus stop, there is some good news for people who use the bus. If you have a disability, you may be eligible for free bus travel.

Visit your local council to apply for your free bus pass.

TRAIN TIME Not all train stations are accessible, although it’s becoming more of a priority across the UK. The cost of train tickets can be extremely painful, but trains are often the easiest way to travel long distances.

If you have a disability, you may

options like taxis and unable to depend on lifts from friends and family members.

Accessibility isn’t just for people with disabilities, it includes young mothers with buggies and even the elderly. Public transport in the UK needs to be made more accessible for everyone.

be eligible for a disabled person’s railcard. Much like a student railcard, you are entitled to third off railway tickets for you and a friend.

Visit www.disabledpersonsrailcard.co.uk for more details.

i

USEFUL LINKS

British Transport Police

www.btp.police.uk

Transport for London

www.tfl.gov.uk

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Tel: 01482 480710 www.panova.biz mail@panova.biz Wheelchair Lift Manufacturer

WHEELCHAIR ACCESS PRODUCTS

Introducing the latest Wheelchair Lift concept:

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the Panova

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Gain the independence you need with our unique lifts

AT ZERO SEAL SYSTEMS WE OFFER A WIDE RANGE OF THRESHOLD PRODUCTS, DEVELOPED FOR WHEELCHAIR ACCESS. THESE INCLUDE A RANGE OF 6.4MM HIGH FLAT THRESHOLDS IN VARYING WIDTHS, A UNIQUE SHOWER THRESHOLD WHICH

MODULAR RAMPS

IS AVAILABLE IN TWO HEIGHTS AND A RANGE OF MODULAR RAMPS THAT CAN BE USED IN A VARIETY OF APPLICATIONS. ALL PRODUCTS ARE HELD IN STOCK AND

Hidden within a pit at the foot of the steps when not in use Suitable for any set of steps, up to 1m rise Discreet and unobtrusive, it is finished to suit your décor Available for use outdoors or indoors We also supply all other types of Platform Lift Contact us for more information

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AVAILABLE IMMEDIATELY. PLEASE CALL US FOR FURTHER INFORMATION OR VISIT OUR WEBSITE.

Zero Seal Systems Ltd Units 43 - 45 Ladford Covert, Seighford, Stafford, ST18 9QG, United Kingdom Tel : +44 (0)1785 282910 E-mail : sales@zeroplus.co.uk

WWW.ZEROPLUS.CO.UK

25/04/2018 15:54

LIFE

Product From independent living aids to cutting edge tech, we’ve rounded up the best on the market for you

PANOVA WHEELCHAIR LIFT

Panova, price on request, www.panova.biz, 01482 480 710 The Panova Wheelchair Lift is proving popular with homeowners, occupational therapists and architects. Discreetly concealed in the floor when unused, the lift safely and quickly carries a wheelchair user over a set of steps. It can be installed indoors or outdoors, and is available in a range of sizes and finishes to suit.

JOINTLYAPP THERA-TRAINER MOBI

Medicotech, £1695, www.medicotech.co.uk, 01908 564 100 If you want extra support to help your mobility, then the THERA-Trainer MOBI, the latest addition to the THERA-Trainer range of exercise bikes is for you.

It’s a small and portable arm and leg exerciser which has been specifically designed for use in the home for those with mobility issues, but who are still able to walk.

The MOBI can be used from any chair, and by placing the bike on the table and swapping the quick release footplates for handles it turns easily from a leg to an arm exerciser.

OPEN KNEE SUPPORT

Neo G, from £20, www.neo-g.co.uk, 01423 507 309 The premium, medical grade support offers dynamic aid and adjustable compression to the knee without restricting movement. The open design with stitched buttress provides added stability by eliminating glide and twisting at the knee. The durable, heat therapeutic fabric helps with arthritic knees.

Pivotell, £75 deposit and £4 per week, www.jointlyapp.com, 01799 550 979 Making sure that someone has taken their medication can be stressful, especially when you are supporting someone at a distance. This new solution from Pivotell and Carers UK combines the latest technology in pill dispensers with the Jointly care co-ordination app to deliver reassurance and peace of mind to families and carers.

STAYBOWLIZER

Doability, £15.90, www.doability.co.uk, 01423 740 450 If you’re after a new method of steadying bowls that doesn’t involve a wet towel, the Staybowlizer is a great invention. It prevents bowls of all shapes and sizes from slipping with a clever suction-lock design.

www.enablemagazine.co.uk

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SUPPORT

Birmingham set for premier of disabled motoring event C

Buckle in because the Motability Scheme’s The Big Event is coming to Birmingham NEC for the very first time. It’s an event guaranteed to meet all your motoring needs

oming to the NEC in Birmingham on Friday 6 and Saturday 7 July 2018, The Big Event is the UK’s largest display of cars, scooters and powered wheelchairs for disabled people.

MOTORING The Big Event is a must for disabled people and their families in order to find out needto-know information about worry-free motoring with Motability. It’s also free to attend and has free parking.

The Big Event is the flagship show in a season of popular Motability Scheme hosted events taking place throughout the summer with the widest range of cars on display. In addition to the two-day event at the NEC in Birmingham, there will be four more regional events taking place across the UK.

There will be opportunities to gather information and advice, see a wide range of vehicles, and take a test drive, all in one place

SUPPORT Visit the Over the past decade these informative Motability Scheme events have supported over 120,000 Facebook page disabled motorists to find out more (facebook.com/ about the Motability Scheme and motability) how to efficiently lease a car, powered wheelchair or scooter.

While The Big Event at the NEC is the largest show of the year, all One Big Day place,” explains Alison Beasley, One Big Day EVENTS CALENDAR events have a wide range of cars on display event manager at Motability Operations including Wheelchair Accessible Vehicles Ltd. “The One Big Day events are incredibly THE BIG EVENT ONE BIG DAY (WAVs) adaptations, scooters and powered popular and attracted over 20,000 visitors in Eiko n Lisb urn, York shire wheelchairs.

2017, and we’re excited to meet more people Northern Ireland Event Centre, There will be helpful Motability Scheme when we head to the NEC in Birmingham for Friday 1 and advisors at every event to answer questions Harrogate the first time in 2018.”

Satu rday 2 June about the Scheme, as well as representatives Saturday 11 All visitors receive a free tea, coffee or soft from the Scheme partners, RAC, RSA and August drink (driving is thirsty work) and the whole THE BIG EVENT Kwik Fit. Information will also be available family is welcome at the One Big Day events.

NEC, ONE BIG DAY from Disabled Motoring UK and Driving Children can meet mascot, Billy the Bear, Birmingham East of Mobility throughout the event. who is always happy to take selfies. There Friday 6 and Eng land Arena, will also be free face painting and a kid’s play Saturday 7 July Cambridgeshire BEHIND THE WHEEL area as well as cafés, plenty of seating and Saturday 8 Visitors can test drive adapted and nonONE BIG DAY accessible toilet facilities. Ear defenders are September adapted cars with a professional instructor available at all Motability Scheme One Big Westpoint, Exeter to find out which vehicles are best suited Saturday 28 July Day events, and sensory quiet room spaces to their individual needs. Test drives can be can be found at each venue. booked on the day – visitors simply need to bring along their full driving licence and choose a car to test drive. i FIND OUT MORE “There will be opportunities to gather Find out more information about The Big Event at www.motability.co.uk/thebigevent, information and advice, see a wide range or call 0800 953 7000 of vehicles, and take a test drive, all in one 54

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27/04/2018 15:03

t Join us a

The Big Event 2018 Experience the UK’s largest display of vehicles available on the Motability Scheme at the NEC, Birmingham.

Over 100 cars from many different manufacturers

Over 40 scooters and powered wheelchairs

NEC, Birmingham Over 35 adapted cars and Wheelchair Accessible Vehicles

Over 45 cars available to test drive including 17 fitted with adaptations FREE entry, FREE parking and a FREE tea or coffee in a fully accessible indoor venue

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National Exhibition Centre, Hall 17, Birmingham B40 1NT

Friday 6 and Saturday 7 July 2018 9am to 4pm Find out more at motability.co.uk/thebigevent or call 0800 953 7000 Please quote MO713D * To test drive the cars you must bring your full UK driving licence and sign our test drive declaration on the day. Full Terms and Conditions can be found at motability.co.uk/thebigevent. The Big Event is organised and hosted by Motability Operations Limited, which is authorised and regulated by the Financial Conduct Authority.

30/04/2018 12:33

The review

Grandland

Vauxhall has expanded its SUV/crossover range upwards with the Grandland X to offer more space, but does bigger equal better?

Inside

The large doors make getting into the Grandland X easier than in one of its many rivals and the seat is lower set than most.

Once inside, the Vauxhall offers lots of room and there’s plenty of adjustment in the steering wheel and seat for anyone to get comfy. However, only the top two trims are offered with lumbar adjustment.

A central infotainment screen is easy to read and has clearly displayed buttons. There’s no shelf underneath to rest your hand on when using it to steady your finger’s aim, but there are steering wheel controls for the

56

main functions and the stereo uses a simple rotary adjuster.

Move into the rear and the Grandland X can accommodate three adults, even if you opt for the panoramic glass sunroof, as it doesn’t pinch much headroom.

The floor is flat right across, so stowing a wheelchair is simple.

The boot is a generous size, ranging from 514- to 1652-litres.

That’s better than a Nissan Qashqai and the space is well shaped with plenty of tie-down points. There’s a high load sill to overcome, though, and when the rear seats are folded they leave a step in the load floor.

Driving The large 19-inch alloy wheels fitted to top spec Grandland X models brings a firmness that borders on uncomfortable, so the smaller wheel sizes are a better bet. They make the ride compliant but make sure that it doesn’t lean too much in bends. The light steering isn’t ideal on twisty country roads, but it’s great in town and for parking. Vauxhall only offers the Grandland X with front-wheel drive, so it’s no offroader, but the raised driving position gives a good view forward. When reversing, however, the small back screen makes parking sensors essential.

You can choose from 120hp 1.6-litre and 177hp 2.0-litre turbodiesel engines that offer up to 70.6mpg and 57.6mpg respectively. Both are quiet and punchy, but the 130hp 1.2-litre turbo petrol is the best bet. It’s smooth, hushed and the slick six-speed automatic offers a combined economy of 54.3mpg.

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MOTORS

Find your ideal car Rica, a consumer research charity working with older and disabled people, has a unique online car search with key measurements and fact sheets. Check it out online at www.rica.org.uk/content/ car-search.

The light steering isn’t ideal on twisty country roads, but it’s great in town and for parking Summary

Equipment You have a choice of five trims, starting with the SE. It comes with alloy wheels, automatic lights and wipers, parking sensors and lane departure warning, climate and cruise controls, a seveninch infotainment display and Vauxhall’s IntellilLink system that lets you contact a call centre for travel, route and destination information. The Tech Line gains a larger eight-inch screen, sat-nav and voice control that makes it easier to use. It also has keyless

entry and start, Lane Assist and emergency braking. Choose the Sport Nav and you get a powered tailgate to open and close the boot at the touch of a button. The Elite Nav offers leather upholstery, heated and electrically adjusted front seats and wireless phone charging, while the Ultimate gains LED headlights, adaptive cruise control, uprated stereo and heated rear seats. The Ultimate also comes with Advanced Park Assist to take care of steering the car into a bay.

The Grandland X doesn’t stand out from the competition in looks or drive, but it has lots of safety kit and low running costs to make it a worthy contender.

Motability Customers The Grandland X is available through the Motability Scheme, starting from your total weekly allowance plus zero Advance Payment. Find out more about the Scheme at www.motability.co.uk, or call 0300 456 4566.

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RRG GROUP MOTABILITY ADVERT Q4 2017.pdf 1 26/09/2017 12:12:39

Open the doors to freedom C

Use your mobility allowance to get a new car every three years

M

Y

Also includes

CM

MY

CY

CMY

K

Insurance for 2 drivers

Servicing, maintenance & breakdown

The easy way to leasing the car of your choice. With the Motability Scheme from The RRG Group, you can simply exchange all, or part of your mobility allowance, to lease a brand new car from our choice of Motability Scheme models.

www.rrg-group.com/motability /RRGGroup

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@RRGGroup

25/04/2018 15:55

LIFE

THE

DIARY 14 – 20 MAY 9 – 10 MAY

COPA SERIES

London Excel, London www.copashow.co.uk tion Europe’s leading event for rehabilita in ch pun a ing professionals is pack , 2018 with a host of keynote speakers ’s year This . liers supp and inars sem speakers include Carl Todd of Chelsea m, FC, Jill Woods from Practice Momentu UK, ase Rele al fasci Myo of Ruth Duncan and many more. Make sure to visit the website to grab your free tickets.

30 MAY

MENTAL HEALTH AWARENESS WEEK

Across the UK www.mentalhealth.org.uk Mental health affects everyone and it’s important to promote positive attitudes towards mental illness. The annual Mental Health Awareness Week focuses on stress in 2018, and in a world that never switches off it’s no surprise stress is on the rise. Tackling stress is the first step to improved mental health and wellbeing. You can order a mental health awareness green ribbon to show your support or order promotional packs from the Mental Health Foundation to help start the conversation.

17 MAY

KIDZ TO ADULTZ SOUTH

Farnborough International, Farnborough www.kidzexhibitions.co.uk One of the largest, free exhibitions dedicated to children and young adults is back and this time it is coming to Farnborough. With over 120 exhibitors it’s the go-to event for funding, mobility, education, inclusive and accessible holidays, style and much more. Parents and professionals are invited to attend free CPD accredited seminars on subjects including, but not limited to, challenging behaviour, moving and handling. Check out the website for the full list of exhibitors.

INCLUSION INTERNATIONAL’S 17TH WORLD CONGRESS

The International Convention Centre, Birmingham www.inclusion-international.org Bringing together organisations from all over the world to learn and inspire from each other, the World Congress is working for global inclusion. Perfect for professionals, self-advocates, and people with learning disabilities and their families to learn, inspire and lead towards inclusive communities. The event will see educational sessions taking place alongside opportunities to network.

8 – 10 JUNE

GREAT SWIM SERIES

Lake Windermere, Suffolk www.musculardystrophyuk.org As the summer months come to life, it’s time to get fundraising. Take the plunge with the Muscular Dystrophy UK team for a one mile open water swim to raise money for muscle-wasting cond itions.

Ever yone is invited to get involved and you can register through the Muscular Dystrophy UK website.

DATES THROUGHOUT JUNE

THE AUTISM SHOW

London, Birmingham and Manchester www.autismshow.co.uk Paving the way for information on autism is the annual Autism Show. Boasting 100 hours’ worth of talks across each event, clinics, workshops, alongside hundreds of specialist products and services.

This is the ideal show for parents, carers or professionals with a direct link to autism. There will be three events taking place throughout June at London’s Excel (15 - 16 June), Birmingham NEC (22 - 23 June) and Manchester Event City (29 - 30 June). Highlights from last year include a new Autism Uncut Cinema, EHCP Help Centre and LEGO Therapy features. Purchase tickets early to avoid disappointment.

www.enablemagazine.co.uk

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27/04/2018 16:05

Dutch Go

this summer

Inner cities bursting with character and a countryside garden blooming with colour – there is more to the Netherlands than the red lights of Amsterdam. Welcome to Holland

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A

country of wonder, innovation and historical charm. From the flowing canals of Amsterdam to the political hub of Den Haag (The Hague), with castles and windmills, Holland packs a punch when it comes to activities and sightseeing.

As European countries become more accessible, the Netherlands is another destination to feel confident travelling to regardless of accessibility needs. Amsterdam is also one of the easiest European cities to travel to from the UK with ferry lines, train connections and, of course, by air.

Once you’ve landed, Accessible Travel Netherlands is on hand to welcome you to Holland with open arms.

ACCESSIBILITY Founded almost ten years ago, Accessible Travel Netherlands provides package holidays for travellers across the country after Veroniek Maat decided to remedy the distinct lack of information about disability and accessibility. “I noticed that there were a lot of people and travel agents looking for accessibility information about the Netherlands. There was very little on pages like Holland.com or iamsterdam.com; it was very limited and not

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26/04/2018 16:25

LIFE

quaint cafés, drink in the mesmerising street art before stopping off at one of the many museums dotted around the country.

In the romantic corners of Amsterdam where you will find locals relaxing, to the bright lights of the centre where the city never sleeps, Accessible Travel Netherlands provides tours for travellers looking to see a side to Holland that many will miss.

“We offer a variety of guided tours in Amsterdam; we have a general history tour of Amsterdam, but we also offer a Jewish history tour, an art gallery tour and secret courtyard tour. There are options for those who have been to Amsterdam before and want to learn a little more about the city,” explains Veroniek.

PICS: © ACCESIBLE NETHERLANDS

always correct,” she explains. “I started to collect information on accessibility in the Netherlands in 2010 and eventually began organising everything for our customers.”

Hosting an eclectic mixture of modern life intertwining with the history of the country, many cities across Holland are more accessible than ever before. Veroniek says: “The cities have been working on improving their accessibility, such as Rotterdam, Breda (a city in the south of the Netherlands) and The Hague is also good when it comes to accessibility and it has a very nice city centre.” With an growing awareness of accessibility needs, it’s not just the cities becoming disability friendly – there is a lot to see and do when you hit the Netherlands.

ACTIVITIES In times gone by, Freddie Mercury just wanted to ride his bicycle – when in Holland it would be rude not to get involved. In a country that loves nothing more than cycling from A to B there is one thing that is for certain, no matter your holiday destination – Holland is as flat as they come.

With a plethora of accessible bike tours, make sure to get on your bike and see the quirky architecture, pass along canals and

HISTORY Towering above Amsterdam city centre is one of the most iconic art galleries in the world: the Rijksmuseum. Playing host to work from Van Gogh, Rembrandt and many more, this is an art lovers’ haven: the museum is spellbinding and aweinspiring. Added bonus: a guaranteed photo opportunity sits outside Rijksmuseum: the famous I Amsterdam sign.

Pre-booking the museum is advised as it’s certainly a hotspot for tourists. From the morning to early afternoon there is a high footfall due to the close proximity of other must-visit landmarks; including the breathtakingly picturesque Vondelpark.

For nature lovers looking for colour and a burst of sensory experiences then Vondelpark is the place to go. A colour chart of green encloses the once private park for a relaxing afternoon stroll, picnic or to join locals as they skate, dance, and get merry.

Looking to pack more nature into your break? Get to Keukenhof.

OUTSIDE THE CITY “In high season it is definitely worth visiting the flower fields of Keukenhof for all the beautiful colours. You can go to the park or just enjoy a driving tour through the countryside and see some flowers in the fields,” adds Veroniek. A sea of red, yellow, pink, blue and orange, the rainbow literally comes to life at Keukenhof.

Similarly, let the intrigue of windmills and towering futuristic architecture entice you away from Amsterdam. As Europe’s most popular port, Rotterdam elegantly mixes canals, boats, and trading with almost robotic and alien architectural buildings that loom over the city in a statuesque manner. From the cube house to the bustling inner dome of Markthal Rotterdam, the city is improving accessibility for all travellers.

With accessible and efficient transportation links, no matter where you stay during your Dutch break, you’re never far away from excitement. A stop at the country’s capital, The Hague is also a must.

Spend the day walking around the royal houses and the parliament before going down to the beach.

Under two hours from many major UK cities, Amsterdam is the gateway city to the Netherlands. Every corner of the country has a surprise waiting to be unwrapped by eager travellers. As the country continues to improve accessibility and showcase its forward thinking inclusive culture, it’s time to pack your bags to visit our dear orange clad neighbours.

i

MORE INFO

Holland is calling with Accessible Travel Netherlands. Book your next trip at www.accessibletravelnl.com or call +31 (0)202 612 6967. Visit Holland’s Tourist Board for more information www.holland.com

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• 8 accessible luxury lakeside lodges in Devon • 5 Caravan Club CL pitches with electric hook up • Well stocked 1.5 acre coarse fishing lake • Heated indoor pool (Seasonal) • Games Room and Free WiFi • Orchard and woodland walk • Dogs welcome

01409 211140 info@blagdonfarm.co.uk www.blagdonfarm.co.uk

Is this how you would like to spend time on your accessible holiday?

You can. If you book an accessible holiday at

MAISON DES LANDES HOTEL in sunny Jersey

Open from May to September Maison des Landes Hotel caters principally for guests with disabilities and their families or carers.

RATES per person per day for bed & breakfast or full board accommodation. Rates include free daily excursions and tours , nightly entertainments and transfers from airport or port and return.

Ask us about our NEW themed holidays in 2018

CONTACT US NOW FOR DETAILS

St Ouen, Jersey JE3 2AA Tel: 01534 481683 Email: contact@maisondeslandes.co.uk Website: www.maisondeslandes.co.uk

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30/04/2018 12:34

LIFE

Accessible

DAYS OUT After the Beast from the East and Storm Emma, it’s no wonder we’re a bit sceptical about blue skies and sunshine. Could this mean that summer is on its way? With good weather comes a need for the great outdoors, festivals, Pimm’s in the park and days out. Luckily these events have accessibility at their heart

E

mbracing the good weather is what most Brits live for. It’s a good job that we’ve got the sights, smells and sounds for a perfect day out. From the rolling glens of the Highlands, to the blooms of the Lake District, and the hustle and bustle of the inner cities, there are activities for all to enjoy – regardless of ability.

Let’s make this a summer to remember and appreciate the summer while it lasts.

MUSIC Is there a better way to enjoy the longer days than sitting with friends listening to your favourite tunes? It’s the reason why setting up camp and heading to the festival field is the highlight of many peoples’ summer. Festival season kicks off in June with music’s biggest names hitting the stage so lucky ticket holders can sing along with the latest releases as well as all the classics hits.

Festivals aren’t out of bounds for people with disabilities. In fact, more and more leading events are becoming increasingly accessible. Last year Reading Festival was awarded a Gold Standard for its level of inclusivity, which is the

highest honour from the Charter of Best Practice of Attitude is Everything (AiE), an organisation promoting accessibility for all.

Reading has gone above and beyond providing dedicated check-in services, fully stewarded accessible campsites, raised platforms for viewing at every major stage, British Sign Language (BSL) interpretations of performances, and interchangeable personal assistant lanyards to allow different friends to attend performances throughout the weekend. The festival has thought of it all.

Working with Attitude is Everything (www.attitudeiseverything.org.uk) since

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LIFE

Visitors in the garden at Barrington Court, Somerset

PIC: ©NATIONAL TRUST IMAGES/JAMES DOBSON

2005, Reading has continually made the festival site and surrounding areas accessible for music lovers everywhere.

Larger festivals like Latitude and Parklife have also taken on board the advice that Attitude is Everything has provided and made their festival experience inclusive with free carer passes, disabled parking and accessible camping areas with the relevant shower and toilet facilities – everyone has a right to enjoy live music, after all.

Like anything in life, preparation is key to enjoying your festival experience. All UK-based festivals will have the relevant accessibility information detailed on their websites to make sure you have the best time over the weekend. We’ll see you down the front.

HITTING THE HIKE Camping may not be for everyone, but that doesn’t mean that fresh air blowing through your hair is off limits. There’s no need to score adventure trails and scenic walks off your accessibility list – it’s time to become one with nature. Being a wheelchair user can leave you wondering what nature trails you can get involved with, but there is more out there than meets the eye.

Getting out and about with friends and family for a walk is a great way to connect, experience local wildlife and exercise without breaking out in a sweat.

The UK is awash with stunning views and historic walks, and many are accessible.

With paths or easy terrain, you could be enjoying the views from the cliffs or getting down and dirty in the mud of the countryside.

The National Trust (www.nationaltrust. org.uk) has a plethora of outdoor activities for everyone to enjoy regardless of ability.

When the sun is shining bright in the sky digging out the walking boots and picking up the camera for an adventure hike in the wilderness is a fantastic day out for all the family.

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Glasgow Science Centre

DAY AT THE MUSEUM When the grey clouds roll over, get yourself to the nearest museum. During the summer holidays, it can be easy for our brains to go into autopilot, but there are museums across the country that are accessible for physical and sensory disabilities – and many have days dedicated for those with additional needs.

For budding scientists, there are plenty of options. Glasgow’s Science Centre (www.glasgowsciencecentre. org) has monthly Autism Friendly Hours to provide all the fun without the stress.

For those in the capital, why not escape the busy streets of London and delve into laboratories of the Science Museum (www.sciencemuseum.org.uk)? The museum also has dedicated time slots for those on the autistic spectrum, induction loops, subtitled videos, Braille and more.

Science has never been so accessible.

Boasting the oldest working aquarium in the world, Brighton Sea Life Centre

(www.visitsealife.com) is home to more than 150 types of sea creatures: it’s a burst of colour, visuals and underwater sounds.

Accessibility is also on the menu with wheelchair and mobility access points, accessible toilets and parking. Staff are also on hand to provide further access information to ensure you make the most of your experience.

History is not off limits either on your educational day out. The Great North Museum (www.greatnorthmuseum. org.uk) in Newcastle has the world all under one roof and is fully accessible.

With wheelchair access, assistance dogs allowed, induction loops, BSL-assisted videos and even guided tours on request, you can be sure to bring history to the present.

Summertime in the UK doesn’t have to be doom and gloom and have you praying for a getaway. There is an abundance of accessible music festivals, nature trails and activities to take part in come rain or shine.

Get disabled access info right at your fingertips with Euan’s Guide, www.euansguide.com

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ACCESS ALL ACTIVITIES Dust off the cobwebs because summer is just around the corner, and it’s time to make the most of the good weather and lighter nights and get movin’ and groovin’ with activities to get you in shape.

Keeping active has never been easier

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here’s no doubt about it: the hardest part of getting active is finding a sport that you are passionate about and want to pursue. For some, hitting the gym is just the ticket and others swear by Zumba. Maybe you’ve still not found the right sport that suits your interests and needs. Keeping active is an important aspect of leading a healthy lifestyle.

Living with a disability can make activities a daunting experience or an aspect of life you’ve never fully considered. Healthy eating and exercise is not what it should be within the disabled community as figures show that obesity is prevalent. Recent government statistics reveal that 31% of men and 45% of women with a learning disability are in the severe category of obesity; this is compared to 24% of men and 27% of women without a learning disability.

Like anything, weight loss is achievable – you just need to find the right sport.

If you’re looking to stay active in the summer months or want to add some extra movement to your daily routine, accessibility shouldn’t hold you back. Make this the summer you discover the sport you were born to play.

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STRICTLY COME One way to lose weight without feeling like you’re actually exercising is to throw some shapes. If you love nothing more than feeling the pulse of music through your body and having a boogie, then dancing might be for you. Dancing is the spirit of the soul and an activity everyone can get involved with.

The beauty of dancing is that it’s not confined to the dance studio – you can literally dance anywhere, even down the fruit aisle in Tesco if the notion takes you. From putting on a YouTube video in the comfort of your own home to attending a class, the options are endless – as are the types of dancing you can do.

Magpie Dance (www.magpiedance.org. uk) has been providing inclusive lessons

since 1985 in a bid to provide somewhere for the disabled community to let their creativity soar. Set up to include rather than exclude, Magpie Dance provides a safe and comfortable space to dance with the opportunity to perform and collaborate with various artists and companies.

Glasgow-based dance school IndepenDance (www.indepen-dance.org.uk) provides inclusive dance lessons for people to express themselves whilst getting fit.

Running mixed classes with disabled and non-disabled people, dancing has never been more fun.

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SPORT

PICS: ©JAMES JORDAN/TENNIS FOUNDATION

CALLING

Make this the summer you discover the sport you were born to play

Anyone for tennis? Tennis season is just around the corner and there is more to the sport than strawberries and cream, lounging with a Pimm’s on Henman Hill or cheering on your favourite player at Wimbledon.

It’s a fun, social sport for all.

Regardless of ability, anyone can pick up a racket and show what they’ve got on the court.

The Tennis Foundation (www.tennisfoundation.org.uk) provides training sessions for people across the UK to turn their dream or passion into a reality with the relevant help and support. Currently running the Open Your Doors project, the Tennis Foundation is teaching clubs across the country how to be more accessible.

Matt Grover, disability development coordinator

for the Tennis Foundation, says: “Our vision at the Tennis Foundation is to make tennis a sport which is inclusive and accessible to all people and communities. We use tennis to improve both physical and mental health, allowing people to enjoy the health and social benefits of the sport, whilst maximising their own personal potential.”

Motability aids, visual or hard of hearing aids, wheelchair tennis and more; anyone can score one love for the sport.

“The feedback we receive is always overwhelmingly positive. From building people’s confidence to changing their lives for the better, the Tennis Foundation provides the tools for people to begin their journey on court,” concludes Matt.

HIT THE Water sports will send a shiver down your spine. In summer, water sports can transport you to the golden sands of far off lands where you can enjoy the waves in serious style. Release your inner Bethany Hamilton – the most successful one-armed surfer in the world – and grab a board.

There are a lot of accessible surfing schools throughout the UK to support budding water sports fans to bag their first wave. Surfability UK (www. surfabilityukcic.org) is a community interest company that turns the open waves into an inclusive space for sport and entertainment.

Leading the way in accessible surfing, Surfability UK also has Britain’s first seated tandem surf board

to allow those who cannot stand up unaided to hit the surf. The team is currently working on surfboards with visual aids, alongside a tandem body board for wheelchair users. Getting out into the open water has never looked more fun or accessible.

There are surf centres across the UK. Wave Project (www.waveproject.co.uk) runs surf clubs in Scotland, Wales, Isle of Wight and throughout the south of England. Founded to help support young people with mental health issues, Wave Project discovered that surfing even once a week improves confidence and outlook on life. Surfing is a fantastic sport for all abilities and a great way to enjoy the outdoors.

Surfability UK also has the Britain’s first seated tandem surf board to allow those who cannot stand up unaided to hit the surf

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INTERVIEW

BLAZER

With his 3D printed head baton, James Rose is leading the first ever disabled-led ensemble

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PICS: © HANA ZUSHI-RHODES, ROYAL ACADEMY OF MUSIC; ZEYNAP DAGLI; KEVINCLIFFORD

s a child, James Rose was fascinated by conductors on tv. When he was nine, he got his first head pointer so he could type using his head, and would bob his head while listening to music – Andrew Lloyd Webber was a favourite composer.

“For ages, the conducting remained a fantasy which I often visited but never told anyone about,” he says. But the experience of performing at the London 2012 Olympic Ceremony made him realise that anything is possible. It marked the start of his conducting and musical journey.

HEAD BATON James has moved on since his first head baton and has spent the last six years designing and trying out different types of conducting batons. Until he approached Drake Music (www.drakemusicscotland. org), a leading arts organisation dedicated to providing music opportunities for disabled people, three years ago, his head batons were still heavy and imprecise. Aiming for simplicity, Drake Music and James developed his current head baton; a simple adaptation to his glasses, and a clamp which can hold a conductors baton.

He was ready to take his conducting dream to the next level.

CONDUCTING James is in the middle of completing an 18–month change makers project placement with Bournemouth Symphony Orchestra (BSO), which provides him with a tailored leadership and management programme to accelerate his development, experience and confidence to enable him to become

James with BSO Resound

James still encounters misconceptions surrounding disability and classical music, but he points out that music is a form of communication

an artistic leader. It’s an intense course that includes conducting tuition, musical theory and mentor sessions – and of course, his new disabled-led ensemble, the first of its kind called BSO Resound.

“The highlight so far has been working with BSO Resound,” says James. “We are exploring new ways of working, such as adapting customs and working with players who play instruments which are new to mainstream orchestral and chamber music, which is really exciting.”

James still encounters misconceptions surrounding disability and classical music, but he points out that music is a form of communication. “There isn’t really a black and white difference between working with disabled and non-disabled musicians,” says James. “In all contexts of music performance, it’s vital to consider the needs of all your musicians. The only difference per se is you are likely to encounter the need to find more creative solutions compared to the ones you might find when working with non-disabled musicians.”

The way to make classical music more accessible is to change the culture, and that includes expecting more from disabled musicians. “They need to be encouraged to achieve instead of being wrapped in cotton wool,” says James. “Of course, you need to keep in mind that the expectations need to be tailored to each individual as well.” i

FIND OUT MORE

To find out more about BSO Resound, visit www.bsolive.com

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SUPPORT

Stepping stones to

Volunteering

Volunteering is an enriching way to spend your spare time – not to mention it can open a door to exciting opportunities. Volunteer Week (held annually on 1–7 June) celebrates the dedication of volunteers and this year’s theme focuses on inclusivity. Dawn Campion tells us how volunteering changed her life

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here are many ways people can volunteer to learn more about themselves, gain experience or, quite simply, to help others in need.

years, working with volunteers and helping them to gain confidence and get into work,” says Dawn. Crediting her time as a volunteer, Dawn knows her experiences can help others, whether they’re struggling with domestic issues, disability, lack of confidence or looking to gain valuable experience.

ADVENTURE “My disability hasn’t stopped me from volunteering. Volunteering is amazing, and I still make time to volunteer. I love it,” enthuses Dawn who has been volunteering since the age of 14. Starting out as a volunteer at a local swimming centre, alongside being a Brownie and BELIEF Scouts leader, to getting involved with “I know how hard it was to the Queen’s 90th birthday and much build my confidence after more: volunteering has led Dawn on a suffering from depression mesmerising adventure. and getting through that. If it Dawn has achieved a lot since she first wasn’t for the volunteering I began donating her time and believes did, there is no way I would she owes everything to volunteering, have been able to look including her career. After having for a job because of depression and my physical children, Dawn’s disability unfortunately deteriorated. disability,” she adds.

There were Living with Ehlers-Danlos Alongside her role with 19.8 million syndrome, Dawn’s bones Leonard Cheshire, which formal can dislocate easily. runs the Can Do programme volunteers She also experiences where people can get in 2016/17 depression, but volunteering involved with gardening, provided an outlet. fundraising and everything in between, Dawn still volunteers.

CAREER From teaching sewing lessons Having successfully volunteered at weekly in a local school, getting involved a Children’s Centre in Derbyshire, it with the Women’s Institute, all the way to wasn’t until a house move called for volunteering at the 2012 Olympics; Dawn an additional income, meaning Dawn is a testament to volunteering, and not needed to find employment. “I found the letting disability stop her. job with Leonard Cheshire. As I hadn’t “I was involved in the baton challenge worked for over eight years I thought where I supported a group of teenagers there was no chance, but I applied to travel from the Olympic Stadium to anyway. My first job application, my first Matlock, this opportunity was so special interview: I got the job,” explains Dawn. and one of the biggest boosts to my Working as a volunteer coordinator, confidence,” Dawn says. “Looking back Dawn understands the importance of at the amount of voluntary positions that volunteering, and advocates others to get I’ve had and the opportunities given to involved, too. me, has been amazing.”

“I’ve now been in my position for five It’s time to get your volunteering hat on.

Looking back at the amount of voluntary positions that I’ve had, and the opportunities given to me has been amazing

i

FIND OUT MORE

Celebrate Volunteer Week at www.volunteersweek.org There is a volunteering opportunity for everyone at Leonard Cheshire, www.leonardcheshire.org

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30/04/2018 12:32

EMPLOYMENT AND EDUCATION

Bring Your A Game It’s shocking but only 16% of autistic adults are in full-time employment.

Laura Hamilton investigates why autistic people are so drastically underemployed

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utism still faces many misconceptions, especially in the world of employment. As it’s on a spectrum, it affects everyone differently, and often only understanding and small adjustments are needed in the workplace and recruitment process to support people with autism. Many companies still shy away from employing people with disabilities over concerns about getting it wrong, or that they don’t know where to go for support, or they assume that any additional adjustments will cost too much money. For autistic people, the recruitment process can be daunting and working in an environment that doesn’t support their needs can be challenging.

While not all autistic people can work, a National Autistic Society survey suggests that 77% of those who are unemployed want to. Many people who are at work say they face discrimination or harassment due to ignorance of what autism actually is.

Although tech companies have been praised for hiring people on the spectrum, there’s a stereotype that autistic people only want tech or IT jobs – that’s not the case, and there are plenty of industries that need the skills that autistic people have.

A DIVERSE WORKFORCE

have particular strengths that make them attractive employees, such as being Diversity in the workplace methodical and committed. is more relevant than ever She also highlights less as the government pushed acknowledged strengths companies with over 250 such as innovation and employees to disclose their creative-problem solving. gender pay gap recently.

“My feeling is that autistic As employers are forced people are more likely to to confront conscious and Catherine Leggett be in the workplace, and be unconscious discrimination, recruited, than people might the lack of autistic people think. But we are ‘hidden’ in the British workforce is and might experience difficulties reaching becoming increasingly visible. Forward our potential, or even sustaining our jobs, thinking companies like Microsoft and because of this,” says Catherine. “I think GCHQ recognise the potential of autistic it’s important that employers ‘upskill’ people and the benefits of a diverse their knowledge of autistic women in the workforce – but it shouldn’t just be tech workplace, and how we might be different organisations. in terms of our strengths, so that we can be “Work is so important for our sense of better supported to excel and progress in well-being and our quality of life,” says our roles and organisations.”

Catherine Leggett, employment consultant for the National Autistic Society, who is also RECRUITMENT autistic. “Our workplaces should reflect “My work life has been uncomfortable and our customers, clients and our society in bumpy. I’m on my third career and I’ve general – and should be one of diversity been made redundant, or lost a job, ten and inclusion, and where difference benefits everyone,” she concludes. times: I’ve had problems. But my current Catherine notes that people with autism role is the best I’ve ever had,” says Arran,

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EMPLOYMENT AND EDUCATION a senior construction consultant at Interserve, who was diagnosed later in life. “I want to hold the door open for the next generation,” says the campaigner.

Arran’s task is twofold: he thinks autistic people need to be made more workready, and organisations need to become autistic-ready.

“It’s not a problem with us, it’s a problem with organisations,” Arran notes.

Diverse environments are more likely to be successful, but the problem is often in the recruitment process. “Autistic people are often the victims of bad organisational and managerial skills of companies,” he says, citing recruitment processes that dismiss talent and focus on highly specific job descriptions instead of how to hit objectives.

Autistic people are often highly analytical and good at solving problems, and this is being underutilised in business. “People often hire similar personalities,” says Arran, “which makes for a similar team who approach problems the same way – which is an issue for everyone.”

Another concern is that while autistic students are on path for a first at university, they may not have developed the social skills yet to successfully navigate working life. Arran also cites a lack of socialisation as a barrier for an autistic person, highlighting isolation as a big problem. “We’re not as intuitive as a non-autistic person,” says Arran. “We’re not tolerated as much as neurotypical people – we’re not allowed to make mistakes.”

A focus on getting autistic people into the workforce would benefit everybody, including other disabilities and disadvantaged groups, points out Arran, and it needs to be a priority.

HIDDEN

While the majority of people diagnosed with autism are men, there are plenty of autistic women out there. “Women tend to mask their autism better than their male counterparts due to social conditioning,” says Catherine. “It’s called the ‘camouflaging effect’: many women and girls are either missed for diagnosis due to this or misdiagnosed with mental

When autistic women can be themselves... in the workplace, they flourish 74

he notes. Only after a colleague with an health conditions.” Autistic women may autistic son encouraged him to tell his seek out social contact and be adept at team did he feel comfortable enough to mimicking body language and social share it. “The reaction surprised behaviours. As a result, they me. The banter around me ‘pass’ as neurotypical, but are changed, I was accepted burnt out. much more and I felt more “I realised at a very Four in 10 comfortable with the fact young age that my way of autistic people I’m different,” Arran says. thinking and interacting Arran was well-placed to was very different from have never disclose his neurodiversity other children,” says worked as he is in a senior position, Catherine. “I tried very but his aim as a campaigner hard to make people like and speaker is to strip the stigma me, by acting the way that they from autism so that it’s on a par with did, so that they would help me telling your workplace about dyslexia: or at least not make things more difficult not a big deal. for me.”

There’s a huge pool of talent out When autistic women can be there, notes Arran, and the UK needs to themselves and are accepted in the capitalise on it. Unemployed and highly workplace, they flourish. “Working for my skilled autistic people could be the current manager has been a revelation,” answer to the skills gap posed by Brexit, she says. “I feel incredibly productive and all businesses have to do is adjust as I don’t need to camouflage at all and to a workforce waiting to show everyone feel accepted and valued because of what they can do. my autism and not in spite of it. I feel confident now, like I’m really working at my full potential in all aspects of my life.”

Catherine runs a course to support

DISCLOSURE

Arran was assessed for autism five years ago after his son suggested it. “As there was a stigma attached to it, my family didn’t want me to disclose it at work,”

women with autism in the workplace.

For more information, visit www.autism.org.uk/womenworkplace For more information, visit www.autism.org.uk/professionals

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EMPLOYMENT AND EDUCATION

Experience worth its weight in gold A three month placement with NHS Lothian gave Alex the experience he needed to get a full-time job.

We talk to Alex about how the graduate scheme gave him more confidence and why he recommends it

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t’s that old chestnut: you can’t get a job without experience and you can’t get experience without having a job.

After graduating university with a business management degree, wheelchair user Alex felt like he needed more work experience, so applied to NHS Scotland to do a three month placement on the graduate management scheme.

He says: “The employability placements can play a key role in providing you with the skills and experience that you may require to pursue your career goals.”

The experience Alex gained from his work placement with the employability department helped him to learn the essential technical and interpersonal skills that are required in a variety of different job roles and work sectors. He learnt many new IT skills on programmes specific to NHS Lothian, as well as learning how to coordinate and plan work as part of a larger team.

One important consequence of his experience is the confidence he gained, which helped Alex to communicate more openly and honestly with others in both a work and social environment. “From personal experience, I would highly recommend the NHS placements if you want to I would highly get a head start in achieving recommend the your goals,” he says.

After his work placement NHS placements if with the employability you want to get a department in NHS Lothian, head start Alex gained a position as project support officer in the tissue viability team at NHS Lothian. It uses both his degree and experience at NHS Lothian, and is also a job role that he finds highly rewarding.

Alex’s aim in his career is to become a member of an NHS management team, and i FIND OUT MORE he credits his initial placement as a crucial NHS Scotland run a graduate management scheme specifically for people with disabilities. milestone in his career progress towards For more information, visit www.mts.scot.nhs.uk his goal.

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SPOTLIGHT

A GOLDEN

TICKET

If you love tv and spend your life on All Four, Channel 4 has lots of opportunities including traineeships and apprenticeships.

Passion is what Channel 4 is looking for: do you have it?

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allum Dziedzic took a year out of his film & tv production course at University of York to apply to Channel 4’s 2016 production trainee scheme when he was twenty-one-years-old: a bold move.

“It was really good fun. You jump in the deep end and they don’t hold your hand, they just expect you to get on with it,” says Callum. “It was incredibly valuable and a galvanising process.”

A mixture of classroom-based training and mentoring, Callum initially worked for Channel 4’s suppliers in Wimbledon. But the opportunities were huge: there was the chance to go to Summer Olympics 2016 in Rio to work as an assistant producer with Sunset & Vine, the sports tv production company. Luckily for Callum, he nailed the interview and spent the summer in Brazil.

ACCESSIBILITY Channel 4 is actively looking to recruit more people with disabilities, and offer extra support in the recruitment process as well as on traineeships. As a manual wheelchair user, Callum was supported throughout his traineeship.

“It was really refreshing as Channel 4 was

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degree, he returned to work for Channel 4. “I’ve stuck with Channel 4 because we have the same ethos,” says Callum, who now works as an assistant script editor for tv series Ackley Bridge. He cites how Channel 4 consulted with him and was logical and methodical about implementing any adjustments he needed.

“Don’t ever feel restricted by your disability. There’s always ways for things to be adjusted,” says Callum. “Demonstrate strong enthusiasm, that’s the most valuable asset you can have, and it’s irrespective of disability.” familiar with disability and not afraid of having a conversation about it,” Callum says.

“We did a training course for two weeks and one aspect of that was disability confidence.

We talked about being upfront and frank about disability in the workplace and how to have those kinds of conversations. And it was useful as some people had hidden disabilities and others had never talked about disability with their peers and were open to learning.”

It’s set a high standard for Callum, and after he went back to complete his university

Applications for the Production Traineeship 2018 are now open. The closing date is midnight on 13 May 2018 and the traineeship starts in October 2018. Apprenticeships in Finance and Research are open from 18th June – 2nd July 2018. For more information, visit www.jobs.channel4.com

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30/04/2018 16:27

enable classifieds HOLIDAY COTTAGE FRANCE

Wheelchair accessible Relaxing location Picturesque Towns, Villages, Rivers & Lakes

Best Camping, Caravan and Glamping site in North Wales - 2017

Call Robin or Shelagh

Llanfair Hall has 5 amazing glamping pods and 1 log cabin, fully furnished and equipped, with their own bathrooms, providing luxurious home comforts, with star-lit nights included.

0044 7812 760 055

www.llanfairhall.com

www.simplyowners.net Property No P59139

Holiday cottage level ground floor with bedroom and bathroom. Second bedroom en suite

07946 388 869

LUXURY HOLIDAY ACCOMMODATION 2 SPACIOUS UNITS Mihangel: Sleeps up to 6 + cot Myfanwy: Sleeps up to 6 + cot, suitable for wheelchair users including a well equipped wet room

Self Catering cottage with wheelchair access. New one bedroom, super king size bed or twin depending on your needs. En-suite wet room, open plan living, dining kitchen. Set in 7 acres of rural countryside on the beautiful Isle of Man.

01341 250 884 | debbieashton@uwclub.net

www.luxurywelshholidays.com

W: theretreat.im E: info@theretreat.im T: 01624 890289 M: 07624 464383

Newly-refurbished self-catering bungalow in spectacular scenery, with fabulous views, full accessible for wheelchair users, and with specialist equipment for disabled guests.

Visit www.meadowsweetbungalow.co.uk to see more pictures of the house, surroundings, and equipment.

Meadowsweet Lochgilphead, Argyll

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If you have any questions about the property, please email: ruthbebb@btinternet.com or call: 07813 321731 / 028 9042 4675

30/04/2018 14:53

Birchcroft

Stunning Mountain Retreat

Ferndown, Dorset

in Carmarthenshire

Set on the beautiful island of Anglesey, we offer you a warm welcome to luxury camping (glamping) at its best!

Great forest walking trails from the door. Converted barn with private garden. Sleeps 4 in two en suite bedrooms. Easy access to West Coast and Brecons. www.thebarnatnantllwyd.co.uk or telephone 01267 220 518

Spacious, contemporary country kitchen and lounge area on site to use at your leisure.

Waking up in your Yurt you will enjoy stunning scenery of the Anglesey coastline, and the communal kitchen looks out onto the beautiful Snowdonia Mountains. The toilet and shower block are modern, light and airy with disabled facilities available.

Nature lover’s secret hideaway, Birchcroft nestles at the end of a winding lane, surrounded by rhododendron bushes in over an acre of land and enjoys walks into the local woodland. This beautiful chalet bungalow offers accessible accommodation with ground floor bedrooms and bathrooms and is large enough for two families.

Visit England 4 star with M2 , H1, V1 rated.

Contact us via

www.birchcroft-hideaway.co.uk Or email us at

holidayindorset@btinternet.com

All the Yurts are tastefully furnished to a high standard, with plenty of space to enjoy the tranquility.

T: 07917 206 994 E: enquiries@angleseyyurtholidays.co.uk

www.angleseyyurtholidays.co.uk

Thatch Close Cottages Luxury accessible & dog friendly cottages in Herefordshire

10%

Welcome to the Wheels for All network!

The Wheels for All network is a movement of inclusive cycling activities and opportunities for children, adults and the elderly using the various Wheels for All centres across England and Wales. Each centre offers people the opportunity to cycle in relaxed settings on their terms by giving access to wide range of adapted cycles under the instruction and guidance of trained and experienced staff and volunteers. Please do get in touch if you want to know more.

info@cycling.org.uk | 01925 234213

www.cycling.org.uk

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discount

Gaskbeg Thatch Close Cottages date from the 17th century and are set in a quiet secluded location with wonderful views over the rolling hills of South Herefordshire.

Book now by visiting our website and quote Enable Magazine to receive a 10% discount!

Thatch Close Cottages, Llangrove, Ross-on-Wye HR9 6EL Tel: 01989 770300 Email: info@thatchclose.co.uk

Situated on a hill farm at the gateway to the Cairngorms National Park, Allt na Criche has modern interiors and is graded assisted disabled, it also boasts excellent environmental credentials It makes a fantastic base for exploring the Highlands. Short break bookings very welcome.

Lucy Grant, Gaskbeg Farm, Laggan,

By Newtonmore, PH20 1BS

NAS M3

www.thatchclosecottages.co.uk

01528 544 336 / 07888 717 866 gaskbeg@gmail.com

www.gaskbeg.co.uk

30/04/2018 14:53

SPOTLIGHT

A small accident with her beloved dog in 2012 turned Jayne Hardman’s life upside down when it revealed a hidden illness

THE POWER OF

PROSTHETICS A

fter her pup hit her on the nose, Jayne knew something wasn’t right. Severe bleeding and swelling led Jayne to Guy’s and St Thomas’ Hospital where she was instantly diagnosed with an auto-immune disease.

LIFE ALTERING “Your dog has saved your life because without treatment you would be dead,” Jayne recalls Dr David Roberts telling her. Jayne has a form of vasculitis, which means her immune system attacks healthy blood vessels.

There are many types of vasculitis, and Jayne has a form called Granulomatosis with polyangiitis (also called Wegener’s granulomatosis) affecting the nose, sinuses, lungs and kidneys – it’s fatal if left untreated.

Shortly after her dog CeCe’s rough play, Jayne’s nose began to collapse into itself and she lost her sense of smell and taste. Eventually, Jayne was left without a nose.

back on again.”

Jayne has been given a new lease of life thanks to advancements in prosthetics.

Transferring to Birmingham Queen Elizabeth Hospital and coming under the care of Kelly Morris, Jayne’s journey to a new nose was imminent. Last November, the remnants of Jayne’s nose were removed to make way for her new prosthetic – connected by magnets.

“I can’t actually feel it as it rests on the magnets rather than on my face. I can wear it for 24 hours and it does not bother me at all. They recommend that you take it off at night – just in case you knock it – and also so you’re aware you’ve got it on. In the morning, you brush your teeth and you rinse your nose,” she explains.

Jayne’s new prosthetic works in the same way as any other nose – sneezing included. Most importantly, Jayne has regained her sense of smell and taste after five years.

Jayne on ITV show This Time Next Year

ENTER PROSTHETICS The world of prosthetics isn’t confined to limbs – it includes noses, too. “I had a glueon nose last year that went on what was left of my old nose. It allowed me to go out and not get stared at – it was almost like the promise of Christmas Day,” says Jayne.

“I would wear the glue on nose for three or four hours and it would really irritate me and when it was hot: it would slide around because of the glue so I would have to fix it

PROGRESS Although her prosthetic nose has given her a new lease of life, Jayne has received negative comments and is acutely aware of attitudes towards visible impairments. Her aim is to educate the public and medical professionals on rare medical conditions.

“I always joke that if I can just save one nose from what I’ve gone through I’ll literally be over the moon,” laughs Jayne.

“We’ve come so far: 20 or 30 years ago prosthetics were really obvious and now, prosthetics are a thing of beauty.”

PICS: ©ITV PLC

Prosthetics are a thing of beauty

For support and advice on vasculitis contact Vasculitis UK on 0300 365 0075 or www.vasculitis.org.uk

Read our full interview with Jayne on the website, www.enablemagazine.co.uk 82

www.enablemagazine.co.uk

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27/04/2018 10:15

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@jiraffe.org.uk 30/04/2018 16:24

MADE FOR PEACE OF MIND THE VOLVO V40 INSCRIPTION. FROM £99 ADVANCE PAYMENT*

Experience a car that’s designed to put you first – for less. With our Motability Scheme offers, you can drive away a V40 T3 Inscription Manual with an Advance Payment of £99* and enjoy a comprehensive range of features:

Alternatively, you can get behind the wheel of our V40 T3 Inscription Automatic with an Advance Payment of £199* or the V40 T3 Cross Country Pro Automatic with an Advance Payment of £299*.

VISIT VOLVOCARS.CO.UK /MOTABILIT Y

• • • • •

Hill Start Assist Satellite Navigation Rear Park Assist Camera Cruise Control Leather-faced upholstery

Official fuel consumption for the Volvo V40 range in MPG (I/100km): Urban 34.0 (8.3) – 54.3 (5.2), Extra Urban 54.3 (5.2) – 70.6 (4.0), Combined 45.6 (6.2) – 62.8 (4.5). CO2 emissions 145 – 118g/km. MPG figures are obtained from laboratory testing intended for comparisons between vehicles and may not reflect real driving results. *Advance Payment of £99 is for the Volvo V40 T3 Inscription Manual. Metallic Paint is included free of charge. Advance Payment of £199 is for the Volvo V40 T3 Inscription Automatic. Metallic Paint is included free of charge. Advance Payment of £299 is for the Volvo V40 T3 Cross Country Pro Automatic. Metallic Paint is included free of charge. Offer available on the Motability Contract Hire Scheme. To be eligible to join the Motability Scheme you must be in receipt of the Higher Rate Mobility Component of the Disability Living Allowance, the Enhanced Rate Mobility Component of Personal Independence Payment, War Pensioners’ Mobility Supplement or the Armed Forces Independence Payment, which will be taken in lieu of the four-weekly rental for 36 months’ duration. 60,000 mileage allowance over 3 years; excess mileage charges may apply. Offer available from 01/04/2018 to 30/06/2018 subject to availability at participating retailers. Offer not available with other promotions and may be subject to change. For full terms and conditions, visit www.motability.co.uk. Motability Contract Hire Scheme is administered by Motability Operations Limited (Registered Company No. 1373876), City Gate House, 22 Southwark Bridge Road, London SE1 9HB.

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25/04/2018 19/04/2018 15:58 09:43