Spring 2018 Magazine

SPINAL SCOTLAND

All enquiries and applications to our address at:

Spinal Injuries Scotland

Fullarton Court (Unit C)

11 Drumhead Place Glasgow, G32 8EY

Tel: 0800 0132 305

Email: info@sisonline.org

www.sisonline.org

SIS is a company registered in Scotland by guarantee and recognised as a charity.

Scottish Charity No: SC015405. ISSN 1363-6723

Any opinions expressed in the Spinal Life Scotland and Newsline are those of the person writing and not necessarily shared. Articles from Spinal Life Scotland and Newsline are available on disc or in large print on request.

Office Hours:

Our office hours are Monday to Friday 9-5pm. Anyone wishing to speak to any of our staff, please call 0141 427 7686.

Legal and Welfare Advice Services:

If you are concerned about legal or welfare issues, please call the office on 0800 0132 305 and we will put you in touch with our advisors.

Tel. 0800 0132 305

If you need someone to talk to, use the above number for enquiries great and small. If no-one is available then please leave your name and number with your message and someone will get back to you as soon as possible.

Honorary President

HRH The Princess Royal

Patrons

Paul Warwick

Harry Brown

Tracey Brown

Ambassadors

Steven McGhee

Linda Bamford

Claire Byrne

Dr Elizabeth Ferris

Joanna Martin

Emma Douglas

Board of Directors

Sharon Lansdowne

Theresa Fern

Jennifer Allan

Stuart Bowie

Lynn Williams

Kathleen McMonagle

Tricia Ward

Patricia Clay-Mackinnon

In the Office Interim Manager

Maureen Morrison

Peer Support Staff

Laura Torrance

Fundraiser Coordinator (Clober Farm)

Marianne Prentice

Cover Photo: Clober Farm

Editorial:

Injuries Scotland and Clear Design (North) Design:

WELCOME TO SPRING

Life SPINAL SCOTLAND

Spinal Life Scotland is your new and improved free magazine from Spinal Injuries Scotland.

We hope you enjoyed the very first Spinal Life in the winter when we launched our new magazine. Our aim is to take the old Newsline and provide you with something more relevant, interesting and in touch with the spinal community. The new team of writers, editors and designers are ready for the challenge!

This is your magazine, about you and for you. At Spinal Injuries Scotland, we want to provide a quality magazine, free of charge, and offer something for everyone. We will be bringing you interesting features, real life experiences and all the latest news from the spinal community. We also want your input. Have you been anywhere or done anything that other members might find interesting? If so, get in touch and get involved. Remember, this is your magazine!

Importantly, we want to make sure the magazine reflects real spinal life. That means we need to be honest. We will not shy away from the subjects that could be challenging to you. We want to let you to know that you are not alone by including real life stories about real life struggles. Spinal Injuries Scotland will always be here if you need to get in touch.

You are always welcome to let us know what you think about the magazine. Maybe there is something you would like us to include. Maybe you want more information about an article from Spinal Life. Maybe you just need some advice and don't know where to go. We are here to help and promise to do everything in our power to meet your needs.

If you are not a member of Spinal Injuries Scotland then what are you waiting for? It is completely free to join, we will send you this magazine every quarter and you can take advantage of all the other benefits our members enjoy. Just get in touch through the e-mail address or phone number below. You can also join up online at www.sisonline.org

Please, enjoy your new edition of Spinal Life.

The Editors.

info@sisonline.org

0800 0132 305

IN THIS ISSUE...

February marked the 5th Anniversary of the first guest at Clober Farm. Check out the story and photographs of this innovative accessible accommodation on pages 14, 15, 16, & 17. It is a wonderful place to stay. For more information please visit www.cloberfarm.co.uk.

Wheelchair Basketball is in a league of its own and Amy Stirling reports on how it is going from strength to strength on pages 4 & 5

On pages 10 & 11, Emma Muldoon tells us about her memorable four day trip to Barcelona.

Volunteer of the Year 2017, Tony Kane, is featured on page 28.

SAFE DRIVE STAY ALIVE

NEWS

Spinal Injuries Scotland was invited along to the annual Safe Drive Stay Alive Road Safety Event again in February. This educational programme targets sixth year pupils. The aim of the event is to help young people to digest ‘extremely powerful’ safety messages about driving and sharing the road, using a mixture of fun and hard-hitting content.

The focus is for young drivers to keep themselves and others safe by stressing that all road users need to look out for themselves. Young drivers are much more likely to be involved in a crash on the roads, often due to inexperience and a lack of knowledge of the risks. Around 1 in 4 deaths on the road are drivers aged 17-24.

Laura, our Peer Support Advisor was invited along for the two-day event to represent Spinal Injuries Scotland, and to spread our message. As always, we would like to thank the organisers for putting on an amazing and impactful show.

GLASGOW CALEDONIAN UNIVERSITY

Each year our Volunteers and staff are invited by Glasgow Caledonian University to speak to potential student nurses about living with a Spinal Cord Injury and personal experience of the care that they have received.

The team took to the stage over five weekends and told their stories and experiences of personal patient care. The aim of the event is to provide prospective nurses with a real-life frame of reference of the difference they can make to someone with a spinal injury.

“Feedback from applicants was unanimously positive with many identifying these sessions as one of the highlights of the day. The aim was to highlight to applicants the types of values, skills and approaches that are required of nurses and how this can positively and significantly impact on an individual's experience. Comments reflected how the sessions had played a significant part in confirming the applicants’ desire to become nurses and make a difference when supporting individuals with healthcare needs”.

William McDonald

Lecturer in Mental Health Nursing / Admissions Co-ordinator

On behalf of Spinal Injuries Scotland, we would like to thank everyone who coordinated the project.

WHEELCHAIR BASKETBALL

- IN A LEAGUE OF IT’S OWN

BY AMY STIRLING

Amy plays for Lothian Phoenix and Scottish Women Warriors.

The country hosts five teams who play in basketballscotland’s SBC League; Grampian Flyers (Aberdeen), Dundee Dragons (Dundee), Lothian Phoenix (Armadale), St Mirren Warriors and Women Warriors (both based in Glasgow). St Mirren Warriors and Lothian Phoenix also play in British Wheelchair Basketball’s National League

When it comes to playing sport Scotland has a wealth of opportunities for disabled people, but wheelchair basketball seems to be one that’sgrowing from strength to strength.

Lothian Phoenix are well established in developing wheelchair basketball and Head Coach Niall Ritchie highlighted the importance of the league in the club’s development:

“Our aim for this season is to beat last year ’ s finish of 4th place The Scottish League is important for us to develop our juniors moving up from the U15s and new players We are looking to show improvement as the players take ownership of the team with a 3rd place finish or better ”

The sport itself is mixed gender and very inclusive of ability All you really need is a love of the game!

This year basketballscotland have partnered with CliniMed, a family owned British company which distributes a range of innovated stoma and continence products, creating the ‘CliniMed Wheelchair Basketball League’ to meet needs of the growing number of clubs. Mike Ferrier, Product Specialist at CliniMed has formed a strong rapport with basketballscotland over the past year working with St Mirren Warriors player-coach Gary Davidson. Mike says, “We are delighted to be in partnership with basketballscotland and look forward to a successful relationship together ”

January 27th saw the aforementioned ‘basketballscotland CliniMed Wheelchair Basketball Cup Final’ come to Oriam in Edinburgh, where Lothian Phoenix and St Mirren Warriors came head to head in an exciting game, seeing St Mirren Warriors victorious in winning the Cup It was a weekend packed with basketball, as the event was held alongside running basketball cup finals, which helped to raise the profile of the sport It was an electrifying weekend with not only family, friends

SPORT

and fans cheering on their teams from the side of court, but because others were watching the game through livestream Thanks to ‘Stream Scene’, over 2,900 tuned in to see the wheelchair basketball Cup final Warriors playercoach Gary Davidson commented, “I think the camaraderie is the best part of being at the Warriors We've been able to do a lot of great things this year and winning the Scottish Cup was a fantastic achievement Going forward, this year we're hoping to stabilise our 1st team in British Wheelchair Basketball’s 1st division, and develop our youngsters in the Scottish league and play offs, having a club with members aged from thirteen to sixtynine demonstrates how the club is growing ” So, what’s next? Tina Gordon, basketballscotland’s Disability Talent & Pathways Manager, says “With external support, this has enabled us to resource the League and Play-off Finals, these events are also providing opportunities to develop a network of officials and volunteers, fostering a family feel and camaraderie amongst the clubs ” She’s right, playing wheelchair basketball, not only in Scotland but throughout the UK, is like being part of a family where despite competition, rivalries and everyone wanting to win (of course!) the friendliness and support is immeasurable It’s not only existing clubs who are taking further steps as both Stirling and Inverness are in the process of developing new clubs in their area So keep your eyes open!

If you would like to find out more about how to get involved in wheelchair basketball in your area, please contact: info@sisonline.org

Photographs: © DStewartSports Photography

SPOTLIGHT ON SPORT: BOCCIA

CLASS BC1

Getting involved in a sporting activity is a great way to stay active and meet new friends. One sport with the unique advantage of being open to almost all wheelchair users, regardless of disability level, is Boccia.

This may be the first time you have heard of Boccia but it has been a Paralympic sport since 1984. There is an exciting Boccia community in Scotland and at the Rio games in 2016, 60% of the GB team were Scottish. It has similarities to the game of Boules and requires players to roll, kick or throw a soft leather ball as close as possible to a target jack.

One of our SIS members, Hannah Craig, 22, from Dundee has been enjoying the sport since 2007. She trains for six hours every week and is a volunteer coach.

There are 21 different clubs and sessions across Scotland. Hannah joined the Dundee club in 2007, the Scotland squad in 2009 and the Tayside squad in 2011 so there are plenty of opportunities to get involved.

There are four different classification levels and this is a sport that almost anyone in a wheelchair can enjoy. The Boccia International Sports Federation (BISFed) defines them as follows:

Individuals with severe activity limitations affecting legs, arms and trunk due to coordination impairment. Can grasp and throw the ball and do not require assistive devices. Players with some leg control can propel the ball with the foot.

CLASS BC2

Players with better trunk control and arm function than players in classes BC1 and BC3.

CLASS BC3

Players with significantly limited function in arms and legs and poor or no trunk control. Use a ramp to roll the ball as unable to propel the ball into the court.

CLASS BC4

Players with health conditions such as muscular dystrophy and spina bifida. Very poor leg and trunk function but are able to grasp and throw the ball.

Hannah's injury is incomplete at C2/3 and she is classified to compete under the BC2 level. Her dad gets involved by making ramps and is currently on version number five. Each has had major improvements on the previous model to try and help Hanna's performance.

Boccia is the perfect way to test yourself at different levels. Hannah has attended competitions from local club level right through to international level so there are plenty of opportunities to show off your new skills.

For those interested there is the opportunity to officiate or referee. Training is provided to gain certification through the Scottish Disability Sport organisation. We are all proud of Hannah who managed to achieve the level one award for officiating Boccia in March last year.

Getting involved in Boccia is a great opportunity for anyone to enjoy sports. Go ahead and try something new this year!

If you are interested then you can get all the relevant information from Scottish Disability Sport, visit: https://www.scottishdisabilitysport.com/ about-boccia or call them on 0131 317 1130.

STUART McMILLAN’S STORY

I hope that what follows is a readable, informative and perhaps entertaining look into my life.

If it's none of these, at least I will have allowed you to while away a few minutes. You will probably gather very quickly that I'm not naturally gifted when it comes to writing, so please make allowance for my poor grammar!

Having been enthused as a young child by my father's tales of motorcycle Cafe Racing in the 60's, it didn't take a great leap of imagination to see where my passions lay. Biking was very much in my family’s genes. In later years we would attend the Isle of Man TT races as a family on our motorbikes.

Continued on page 8

Hi folks. I'm Stuart McMillan, a half century old keen biker, mountain biker, rock music-loving father and husband.

I always harboured a desire to race having watched Steve Hislop, Carl Fogarty, Kevin Schwantz, Wayne Gardner and Wayne Rainey racing at the TT and in 500 GP. I raced for a few years at club level in the Scottish championship on a Yamaha 350 and a Honda 600. My journey to a wheelchair via A & E could have started a great many years earlier than it did, when my racing career was cut short following an accident at East Fortune in May 2001.

I was violently high-sided at about 60mph, colliding with my own bike!

While racing at East Fortune I was exiting a corner called ‘Snake’ in 3rd gear. Accelerating hard I registered that I was now looking back up at my Honda 600, having been rotated through 180 degrees forward off the front of the bike. The thought crossed my mind

‘I think I can save this!’ shortly followed by the realisation that I wasn't going to!

Initially it was feared that I had broken my neck, but thankfully it was nothing more than substantial bruising and a concussion. Mrs McMillan put her foot down however and forbade any further bike racing shenanigans as we had a 6 month old daughter to think of. So that ended my foray into the world of motorcycle racing and cleared the path for Valentino Rossi to dominate unchallenged in the MotoGP championship!

After this I was confined to using a motorcycle purely for commuting and pleasure. Over the next few years I had a number of bumps and scrapes which led to a brief hiatus in which I got all ‘sensible’ and bought myself a sports car to try to kick the biking bug.

I was given new things to try which will supplant my old hobbies, such as sailing, swimming and hand biking.

‘‘This stand-up wheelchair, purchased by funds from the UK Oil and Gas Offshore Chaplaincy, will help enable me to work in my kitchen without having the place adapted.

Unfortunately the sports car didn't tick all the boxes, it just wasn't a motorbike! So I managed to convince my long-suffering wife that I desperately needed to get back on two wheels.

At this time, I was employed offshore in the North Sea by Apache North Sea Ltd. I was based on the Forties Delta. I don’t want to bore you by offering a potted history of my time offshore, but I feel that I need to give you some background as my time as an offshore employee was brought to an abrupt end on March 15th, 2017.

During my field break I was faced with the choice of going to the gym in my BMW Z4 or on my beloved Ducati Diavel. This dilemma ended up having huge implications. It was the first sunny warm day of what was shaping up to be a fantastic new year and with new tyres on my bike, it was handling fantastically. So I chose the bike. On returning from the gym I thought I’d take the scenic way home, which unfortunately resulted in a collision with a car on a winding road. My resulting injuries were a broken right thumb, 6 broken ribs, a collapsed right lung, bleeding on both lungs, a broken right femur, open book pelvic fracture, a fractured pelvis but most seriously, a T6-7 spinal injury, which has rendered me paraplegic.

I now have no feeling from the chest down. My life and the lives of my loved ones have changed inextricably. My house is still to be adapted, but at least I don’t need to add moving home to the list of monumental life changes I’ve already imposed on my family.

All the things which I loved doing; working in my garage with my son, mountain biking, the gym, long walks with my dog, all these things are no longer an option for me.

During my time at the spinal injuries unit however I was given new things to try which will supplant my old

hobbies, such as sailing, swimming and hand biking. I am due to take part in the Inter-Spinal Unit Games at Stoke Mandeville in April. There will be swimming, archery, table tennis, rugby, basketball, rowing and athletics. Plenty to do!

I’m not letting this beat me. Yes, my life has changed but it hasn’t stopped. I don’t know what the future holds for me, but one thing is certain, I will never set foot on an oil platform again. For those of you reading this who are one week into a threeweek trip might think that’s no bad thing, but believe me I would never complain about working 3/3 if I could change things. One thing I will sorely miss about being offshore is the sense of community. Part of that community is the UK Oil and Gas Offshore Chaplaincy, which sadly I have to confess, I knew nothing of. The Chaplaincy was set up in the aftermath of the Piper Alpha disaster and the Chinook disaster to provide support for the families affected by the loss of loved ones. The Chaplaincy still provide support to oil workers and the families of oil workers who have had misfortune bestowed upon them. Having contacted the Chaplaincy they have kindly supplied the necessary funds for me to purchase a stand-up wheelchair.

This chair will enable me to work in my kitchen without having the place adapted. There are also many health benefits from standing, so this chair will be a major benefit for my future well being.

Have a safe 2018. Wishing you all the very best!

Stuart

If you have an interest in new activities like sailing, swimming or hand-biking the please get in touch with Spinal Injuries Scotland and we will help you get started.

Travelling as a wheelchair user can be challenging and extremely rewarding at the same time. This led me to create my own travel and disability blog focussing on accessible travel and life experiences. I share accessible travel guides, accommodation reviews, travel tips, live event reviews and more.

My most memorable trip from last year was a city break to beautiful Barcelona for four amazing days. When we landed I caught a glimpse of the sunshine and I could tell it was going to be a fantastic trip. It felt good to leave rainy Scotland and arrive in sunny Barcelona!

BEAUTIFUL BARCELONA

‘‘I have always loved visiting new places both at home and abroad. The feeling of excitement and experiencing the diverse cultures of dream destinations are just a few of the things I love most about travelling.

Emma Muldoon

I believe planning is key for a stress-free and accessible trip. Before any trip I always make sure I research the accessibility of the destination, including accommodation, public transportation and things to do. If possible I’ll pre-book airport transfers to and from the hotel. Taxi Amic was the company we used in Barcelona as they provided wheelchair accessible vans which allowed me to remain in my wheelchair.

Finding accessible accommodation is very important so we were thrilled with our fully wheelchair accessible apartment at MICs Sant Jordi, located in the lovely Sarrià neighbourhood. It provides a peaceful setting with shops and restaurants nearby as well as a metro station outside the apartment building. Access to the centre of Barcelona was within 12 minutes.

MICs Sant Jordi offers the best experience for an accessible holiday in Barcelona. Each of the 32 accessible apartments offers roll-in showers, adjustable beds, automatic door entry systems, light switches and temperature controls all at wheelchair height.

What else I loved was that the entire building has wheelchair access throughout. There was a hydrotherapy pool, adapted gym, a range of equipment and hoists for use, 24-hour care service and more. This is truly the most accessible place I’ve ever stayed in.

Although there is a fully equipped kitchen in each apartment, we chose to have breakfast from the restaurant within the apartment building while sitting on the outside terrace. It was a lovely spacious area with tables that I was able to easily roll underneath. It was the perfect way to start each morning.

SPINALLIFE

The first and one of my favourite things was take an accessible walking tour of The Gothic Quarter. Despite being an old part of the city, it was very accessible and incredibly beautiful. The tour gave us a feel for the neighbourhood and was an area we enjoyed strolling through day and night. It is magical and full of culture, Roman architecture, restaurants, cafes and boutiques. A trip to Barcelona wouldn’t be complete without a visit to the Gaudi masterpiece, Sagrada Familia. This building has been under construction since 1882 and despite being no way near completion, it is still a place you must visit. It’s impressive size and beauty had us amazed both inside and outside. It also offers free admission for disabled people and a companion, so it’s well worth visiting. Another favourite and probably the most memorable highlight of my Barcelona trip was taking a dip in the sea with the amazing beach wheelchair at Nova Icària beach With the beach wheelchair, you can literally go wherever you want whether it’s in the water or sunbathing on the sand. Nova Icària beach offers amazing accessibility for disabled people. Not only do they provide these wheelchairs, there are also accessible paths and wooden boardwalks to the water, accessible toilets and changing rooms, hoists, and accessible showers on the sand as well as assistance from lifeguards.

The day at the beach was stunning and for the first time in 25 years I was able to enjoy time with my family on the sand and in the water. It’s a day I’ll never forget. Barcelona captured my heart!

A few years ago, Steven decided to tell his story by writing a blog. Now Spinal Life Scotland is happy to share that story with you.

In our last edition we found out about Steven’s accident and his time in a Spanish hospital. The Whole Truth will continue in the future editions of Spinal Life Scotland

THE WHOLE TRUTH STEVEN’S STORY

Steven is a volunteer with SIS who 11 years ago had an accident leaving him with no movement below his neck and needing a ventilator 24 hours a day. Despite these challenges Steven is an example that no disability should mean an end to fun and enjoying life.

TRAVEL INSURANCE ROULETTE

I have always grudged paying insurance. Building, contents, car, life, travel. So much so that as an adult I never once forked out for travel insurance.

If I can sidestep an optional insurance then I will Travel insurance never had a look in. If I ended up needing to pay for treatment then I would just... well... it doesn't matter. That kind of thing wouldn't happen to me.

As always, I thought I knew best (in my defence, I usually do!)

With my best friend's stag weekend having arrived I was sticking to my guns. I had decided arranging insurance for a weekend in Spain was more hassle than it was worth. 24 hours later I jumped in the swimming pool at the hotel. Next thing I was lying in a Spanish hospital attached to a ventilator and paralysed from the neck down.

You can explain the following story as fate, luck, destiny or simply a coincidence but this is what happened in the 24 hours before leaving.

You can also follow Steven's story on twitter @choose_living

The night before our flight we had a party at my house to kick-start the weekend. It was extremely messy (in the best possible way). Things started to wind down at about 6am. We were leaving for the airport at 10am so I didn't want to sleep. After drinking so much I was worried I would not wake up in time and miss the flight. In hindsight, that would have been a blessing.

SPINALLIFE

I was trying to pass the time so decided to check and find the cheapest quote on the Internet for travel insurance. I don't know what made me curious. It was very unlike me. I had never checked for any other holidays. After all, travel insurance is a rip-off.

The cheapest quote came in at £3.90. My pizza during the party cost double that. I would pay more for a drink at the airport.

Seemed like decent value and there was a handy PayPal button so why the hell not? I put some basic details through the system and had a certificate of insurance e-mailed to me within 5 minutes. Job done, time to have another few drinks before going on our holiday.

I am all too aware how one minor decision, like when I jumped in the pool, can go on to shape your life. I still get chills when I think about the consequences had I fallen asleep or closed the laptop that night

By the time I was back in Glasgow they estimated the cost of my treatment in Spain and the specialist flight home to be just OVER £85,000. All that care plus personal injury compensation covered for £3.90. Travel insurance didn't look like such a rip-off after all.

I could not have covered that cost. My parents who had just moved to their dream house would have had to remortgage. Friends and family would have begged and borrowed just to get me back in the country. I would have been in Spain for weeks receiving the basic level of care until funds were arranged.

The financial impact on my family and friends would have been an enormous burden to bear. The guilt would have eaten away at me and who knows how much damage it would do.

Multiple holidays every year for many many years and this was the ONLY time I bought travel insurance. It doesn't seem like too crazy a notion to consider that fate intervened (replace fate with God or luck or destiny if that's what you believe).

Was I in the wrong all those years? After spending £3.90 to cover £85,000 worth of life-saving treatment I have never been so happy to say that I was completely wrong.

With summer approaching please don't make the mistake of thinking it would never happen to you.

STEVEN IN HOSPITAL

The

cost of my treatment in Spain and the specialist flight home was just over £85,000

CLOBER FARM

February marked the 5th anniversary of the first guest at Clober Farm. The Grade C listed property was bequeathed to The Charity in 2007 by Vivian Donaldson.

After a 5-year project to convert it into innovative accessible accommodation it was opened in 2012 by Spinal Injuries Scotland’s Honorary President HRH The Princess Royal.

Spinal Injuries Scotland decided to convert the former farmhouse to provide a space that was truly accessible to people in wheelchairs so that they can enjoy their independence while relaxing in a modern and spacious property.

The lower apartment has three bedrooms and can sleep six people plus pets. The master bedroom features a ceiling tracking hoist and an adjustable bed with an Invacare profiling mattress. The master ensuite is a wet room with shower and height adjustable sink. There is a fully accessible kitchen with low level fridge, freezer, microwave and oven. There is also an adjustable height worktop with induction hob and sink.

The extensive gardens were featured on BBC’s Beechgrove Garden with the Glasgow Warriors, Hearts and Balls and volunteers from both Digby Brown and Wylie and Bisset providing the much needed spadework to realise Karen Laing’s design. Karen came up with a lovely design, incorporating separate areas for enjoying the garden in different ways. This included raised beds for herbs, fruit and vegetables, and an ingeniously designed lawn built at a level that would enable wheelchair users to transfer on to the grass far more easily than would normally be the case.

Our Peer Support Volunteer Graeme Quinn was involved in the initial stage of testing the accommodation before it was officially opened.

FEATURE

“My experience at Clober Farm was good. I stayed as part of a dry run in preparation for HRH Princess Anne’s visit so that she could actually talk with someone who had used the building.

We only stayed overnight but it was a comfortable evening. We weren’t very familiar with Milngavie beforehand so we went to explore and managed to find the town centre where we bought some food to cook. That was the first meal ever cooked in the kitchen!

My Mum and I both enjoyed our stay. It wasn’t 100 per cent perfect but we managed. At the time the building wasn’t quite setup for high-level spinal injuries. The bed wasn’t height adjustable making it difficult for a carer to assist with dressing etc as the bed was very close to the ground. The ceiling track hoist system hadn’t been installed either so the hoist was a floor standing model which was a little awkward to move.

However all of these small issues have been resolved. If I ever stay again I know it will be perfect for my needs. Marianne the caretaker, with all her local knowledge is a real asset to guests.”

Graeme Quinn, Peer Support Volunteer

Continued on page 16

The extensive gardens were featured on BBC’s Beechgrove Garden.

(BELOW): PATIO DOORS FROM THE LIVING ROOM. MASTER BEDROOM.

(BELOW L-R): THE LIVING ROOM. ENSUITE. (BOTTOM L-R: PLAQUE. KITCHEN.

Clober Farm has hosted hundreds of guests over the past five years and has provided a relaxing space where guests can unwind knowing that all their needs are catered for, therefore removing the stress of finding suitable holiday accommodation. For some guests their visit to Clober Farm was their first holiday since suffering a spinal cord injury years ago. Many of Clober Farms guests have expressed great delight with the accommodation writing in the guest book:

“I stayed at Clober Farm over Christmas 2016 with my daughter and son in law. When we arrived we discovered that Marianne, the Caretaker, had put up a Christmas tree and Christmas decorations, making us feel welcome and ‘Christmassey’. We really enjoyed our stay.

The facilities provided at the farm are exceptionally good for wheelchair users and their friends or families, with their every need catered for, including a well equipped open plan kitchen, dining and living area, a large double bedroom with ensuite wet room and another 2 bedrooms, a double and a single. The accommodation is spacious, there are remote controlled doors and window blinds, and plenty of room for everyone.

Clober Farm is situated in Milngavie, on the outskirts of Glasgow. The train station is within a 20 minutes walk, and you could be in Glasgow Centre within the hour or if you’re driving. Loch Lomond is about 20-30 mins drive away.

I would thoroughly recommend Clober Farm to anyone who needs the special facilities provided there. Christmas 2016 was my second stay there, and I hope to return the next time I go to Scotland.”

Judy Harrison

Marianne Prentice has been the caretaker at Clober Farm and has greeted guests with a smile and biscuits for the past 5 years.

“I find it very rewarding when the guests pass on favourable feedback such as: “Thank you so much for your help. Had a really relaxing weekend and for the first time ever, no worries!! Everything is amazing and I look forward to coming back really soon for longer.” And “It’s like having a whole hotel to yourself.”

We also receive suggestions from guests on how we can improve their experience. With that in mind we have replaced the Invacare mattress and Out-a-sight shower curtain, employed a gardening contractor, bought new linen and towels, and had the garden paving jet washed and sanded. The most noticeable change is the décor. No more magnolia! The Clober Farm group of Joanna Martin, Graeme Quinn and Alex Findlay chose a palette of warm neutrals to update the colour scheme. Thanks are due to Sharon Black from 154 (Scottish) Regiment RLC and her team for the hours spent on painting our home from home.

The Clober Farm group are working closely with Visit Scotland with a view to joining their internationally recognised Quality Assurance Scheme. Part of this process will involve updating the Clober Farm website to enable online booking and fundraising for a high back chair and a larger television for the living room. One of our regular guests requested the TV for her movie nights. I am keen to take forward these ideas for Clober Farm in my new role as Fundraising Coordinator. This will mean we are building on the success of the first five years and ensuring that we meet and exceed the expectations of all our guests.

Spinal Injuries Scotland planned to have an open day at Clober Farm to celebrate the 5th anniversary, but unfortunately it had to be cancelled due to the extreme weather in Glasgow. We will let everyone know of the next date in due course.

We would also like to thank everyone who has stayed at Clober Farm over the last 5 years, and all our sponsors who helped this project to be realised.

For more information please visit www.cloberfarm.co.uk or follow Clober Farm on twitter @cloberfarmSIS.

‘‘ The facilities provided at the farm are exceptionally good for wheelchair users and their friends or families...

Wonderful first time holiday since my injury. Made life so easy and enabled us all to be together with my family in Scotland. My son loved every minute at Clober Farm with all the gizmos and gadgets. You have thought of everything!

Hannah Miller and Family

We stayed at Clober Farm for seven months during Tony’s rehabilitation at the Spinal Unit. Absolutely fantastic house with everything well thought out for disabled needs. The garden is an additional treat which makes the stay even more enjoyable.

Tony & Jacquie Steeple

Our first stay at Clober Farm when we first arrived we were amazed by the adaptations, especially the universal controls. We initially didn’t know how to work them as we don’t have them at home and felt like we were in a ‘millionaires house’ because it was so techy! It far surpassed our expectations! We used Clober as a base to explore Scotland as it is perfectly placed to easily travel to Luss, Loch Lomond, Edinburgh and Glasgow. We will certainly recommend this to our friends!

The Smyth Family

Wow! As soon as we walked in we could see how much work has gone into Clober Farm. For Spinal Injured people and their families this is just like a five star hotel! Everything has been considered. Well done. We will definitely be back.

Raymond & Francis Brown

GIL PATERSON MSP, MAUREEN MORRISON, JAMIE WARD & ROSS GREER MSP (BELOW RIGHT)

JOHN McADAM BULLEN HEALTHCARE

I have worked for the company for over six years and in the medical devices world for 16 years in total. My background was in nursing and I worked throughout Scotland, but mostly Monklands Hospital where I was manager of the urology Ward. I am an enthusiastic, although poor golfer and love most sports and I’m very competitive in everything I do. I have a son who is 23 years old and I live with my wife and two dogs in Airdrie. I have recently returned to live here, where I was born, after 10 years living in the East Neuk of Fife. Madness, I know, but now you know who the boss is…not me!

Continued on page 20

Hi, my name is John McAdam and I’m the Country Manager in Scotland for Bullen Healthcare.

My role covers every part of the business in Scotland. I meet with nurses in hospitals, Health Centres, Continence and Urology departments and even sometimes deliver parcels when the need arises. Bullen Healthcare is a family-owned company with family values and that is what attracted me to work with them. I have worked with huge global corporate companies in the past but I can genuinely say that I am valued and I’m known to the management team and every customer is valued and listened to.

I have been aware of Spinal Injuries

Scotland for some time and made my first Winter Dance attendance back in the Parade night club in 2001 (no black tie affair let me tell you). I’m also aware of the challenges faced by the spinal cord injured community and in some ways this guided me into a career in nursing. My dad was spinal cord injured when I was at primary school, although he didn’t engage with the charity as it cost money for the magazine in those days.

I remember visiting Philipshill Hospital in Busby – two buses from Airdrie – and the challenges faced after his discharge. There were no hoists, OTs or adapted houses in those days which meant moving house, a new school for me, my brother and two sisters and changes to every aspect of life.

I mentioned community earlier and my dad kept in touch with the folk in the ward. They shared stories, experiences and sometimes products when supplies were short. They were a community but they were small and isolated.

Spinal Injuries Scotland has grown to represent the community and the partnership with Bullen Healthcare provides a service that best suits the community’s needs regarding medical devices and medication.

If you have an idea then get in touch. We are always open to any suggestion that will assist in improving the services we provide. We don’t choose which product is best. That’s you and your healthcare professional’s choice. We just make sure it’s delivered free of charge and at a convenient time and place for you and your family. If you use the service and there is something specifically you need, then either talk to me or your dedicated customer service advisor. However, if you’re unsure then why not get in touch to see how we can help and how you can support the charity:

Email: JMcAdam@Bullens.com Mobile: 07970 244 789

‘‘ Spinal Injuries Scotland has grown to represent the community and the partnership with Bullen Healthcare provides a service that best suits the community’s needs regarding medical devices and medication.

SPOTLIGHT ON WELFARE RIGHTS

SUPPORT FOR MORTGAGE INTEREST IS CHANGING

If you’re on certain benefits and you have a mortgage, you may be getting help from DWP to pay the interest on your mortgage. This is called Support for Mortgage Interest (SMI) Support for Mortgage Interest is currently paid as a benefit, which you don’t have to repay. From 6 April 2018, this is changing and it will be paid as a loan - which must be repaid when you die or sell your home.

You don’t need to do anything until DWP contacts you about this change. Everyone affected will be written to and telephoned about their options. Anyone currently receiving SMI will be offered a Support for Mortgage Interest loan.

You should receive a letter with an information booklet about SMI loans and details about the information support call you will receive from Serco. Serco are working on behalf of DWP to explain the changes to SMI. They will answer any questions you have about these changes.

KEY FACTS ABOUT THE SMI LOAN

•There are no fees to set up the loan.

•You don’t have to get a credit check to get the loan

•Unlike a normal loan, you don’t have to make regular repayments - unless you want to

•Interest will be added to the total amount you owe, until the loan is paid back or written off

SPOTLIGHT

•You will not get a loan automatically - you have to choose to take one out

•The loan is secured against your home. When you sell your home or transfer the ownership of it to someone else, you must pay back the loan out of any equity that is left over once your mortgage is repaid.

If you’re claiming Income-based Jobseekers Allowance, you can only get SMI for up to two years.

If you get Income Support, Income-related Employment and Support Allowance,Universal Credit or Pension Credit, there’s no limit to how long you can claim SMI for.

Any new claims to SMI will be offered as a loan. This is because there is a 39-week waiting period from the time you claim SMI until your first payment is made and there is now less than 39 weeks before SMI changes from a benefit to a loan so any new claims will receive SMI as a loan, not a benefit. The 39 week rule does not apply to people on Pension Credit.

Before you decide whether an SMI loan is the best option for you and your household, it’s a good idea to seek advice. You can obtain further information by contacting the Money Advice Service on 0300 500 5000 or your local Citizens Advice team.

Jacqueline Lange Welfare Rights Adviser Digby Brown Solicitors.

Clober Farm

Accessible self-catering accommodation

Fully accessible living accommodation and accessible garden with patio area and raised beds, designed with the wheelchair user in mind. Close to Loch Lomond and the Trossachs. Open all year.

Please get in touch with Spinal Injuries Scotland on 0800 0132 305 Twitter@cloberfarmSIS. Email: info@sisonline.org www.sisonline.org

•Level access throughout

•Sleeps 6

•Master bedroom with Liko 200 ceiling tracking hoist, height adjustable profiling bed and Invacare pressure relief air mattress, plus single bed

•Ensuite wetroom with shower chairs provided and righthand transfer accessible toilet

•One double room and one twin room

•Family bathroom with over bath shower, height adjustable sink and accessible left-hand transfer toilet

•Combined kitchen/living area with patio doors leading onto a patio area and landscaped wheelchair accessible garden

•Wi-Fi internet access

•Private accessible parking, 2 spaces

•Fully accessible kitchen with low level fridge, freezer, microwave & oven. Adjustable height worktop with induction hob and sink

•Utility room with washing machine, dishwasher and clothes airer

•Assistance dogs welcome

•Pets welcome

•Non smoking

ACCESSIBILITY AT EDINBURGH AIRPORT

Every year over 90,000 people pass through Edinburgh Airport who need assistance in one form or another to navigate the airport.

It is estimated that only 80% of that 90,000 actually notify the airport in advance that they will require assistance.

Spinal Injuries Scotland has been taking part in a Consultative Committee, comprising of key members from local charities and disability organisations including The Scottish Government, The Salvesen Mindroom Centre, Deaf Action, Alzheimer’s Scotland, Autism Initiatives, Leonard Cheshire, MS Society and Guide Dogs for the Blind.

Andy Wright from Accessible Travel and Leisure invited Spinal Injuries Scotland to take part in a Consultive Committee, to examine Edinburgh Airport’s current processes for assisting passengers with additional needs. As well as to scrutinise the airports performance, and provide feedback and guidance as to how Edinburgh Airport can best meet expectation, and improve the airport experience for mobility, sensory and cognitively impaired passengers in the future.

If you have experience with long distance travel as a spinal injured person or as a carer please get in touch to share your experiences on info@sisonline.org

Watch this space for updates.

The purpose of the Consultative Committee is to examine Edinburgh Airport’s current processes for assisting passengers with additional needs.

HARDEEP’S MEAL OUT&ABOUT

Hardeep Singh Kohli offered to cook a meal for up to eight people in their own home, as a prize for auction at the SIS Winter Dinner Dance.

Our Winter Dinner Dance in November was hosted in style by broadcaster, writer and chef Hardeep Singh Kohli. Hardeep who is also well-known for his comedy, writes for national newspapers and has written and presented radio and TV programmes about food so he very kindly offered an item for the auction. He said he would cook a meal for up to eight people in their own home. My son David and his wife Gillian decided to bid for this item which they won. They saw it as an opportunity to have a unique evening of food and entertainment.

Hardeep and David were in touch well before the evening to agree on the menu and on the day. My wife Wendy and I, my other son Alan, his wife Jenna and Gillian’s parents, Moira and Joe were greeted by Hardeep and his amazing Cardamom Martini which went down really well with everyone. The meal itself was amazing. It was all cooked fresh and served up by Hardeep. The starter was chana chaat followed by tandoori spiced mackerel with grapefruit salsa. The main course was masala leg of lamb with red lentil dal,coconut rice and mint and apple raita - absolutely amazing. Desert was a delicious apple and stem ginger crumble. As Hardeep served it all up he explained how he had prepared the food all the while in his own unique hilarious, irreverent way. He even supplied his own choice of music on the night. Not only is he a great cook but his banter and comedy made it a night to remember.

ANDY NISBET (Volunteer)

GARDENING GROW!

Exposure to natural spaces can be restorative

While studying for a qualification in Social and Therapeutic Horticulture a few years ago, my research drew me to reports of experiments observing identical housing schemes built many miles apart, but with variations in landscaping around them. The one with tree-lined streets and green spaces reported much lower crime rates, fewer public health issues, etc. and I couldn’t help thinking how odd it was that a report should need to be commissioned to establish that.

Exposure to natural spaces can be restorative, even if it’s subliminal. More recently I heard that even viewing pictures of natural scenes had a soothing effect. It seems obvious to me. But then it would. Having a connection with nature has always been imperative to me – as far back as I can remember – after all, I’m just a part of nature, not apart from nature.

When I tried Mindfulness it reminded me of gardening, and my mind clearing (instead of weed clearing) when I’d watch a bird tugging on a worm. Did I feel sorry for the worm, being pulled out of the ground or pleased for the bird feeding itself and its young? I was transported, briefly, from all the thoughts that racked my mind. Everything I spot, I link with nature; suspension bridges, spiders’ webs, velvet fabric, thick green moss – it’s endless!

Changing skies create different scenes of the same view, time after time, helped by the seasons, and it feels so personal. So when I can, I find a spot, and use all of my available senses to log what I wouldn’t have noticed otherwise; sounds, smells, breathe and calm. Just pause. With Spring upon us, why not find your connection with nature and grow from within? Growing, photography, art, music – all inspired by nature – if only you seek it!

RICHARD FEDORKO

even when it’s subliminal.

YOGA: FOCUS & CONNECT

I had a determination to rebuild strength, stamina and, to be honest, self-esteem, after illness left me having to ‘start over again’ in many ways. Needing to re-learn skills knocked me back time and again, yet I found myself in a yoga class half wanting to escape before the instructor arrived. For once, dithering served me well as the Instructor arrived and reassured me that I should just take my time and discover what I should practice. Just practice. Here was someone willing to share considerable knowledge, giving me less of a hard time than I was giving myself Not that it was easy, it was all new to me and not like I’d expected, but that was my first lesson. I’d gone with it because it felt right, sort-of! But positive challenges lay before me now and energy previously spent on frustration, anger and spiralling thoughts found new direction, developing focus, calm and peace allowing me to apply my mind to achieve my best – at each

point – from my body. This brought a deeper realisation that I’d found a lifelong path of building and refining that feeling of wholeness that had been missing.

The philosophy, breath and stillness of yoga hadn’t been part of my preconception but here was a whole system that proved itself and I could make some of this work for me. My mind and body would attune like never before and I understand what violinist Yehudi Menuhin meant when he described yoga:

“Yoga induces a primary sense of measure and proportion. Reduced to our own body, our first instrument, we learn to play it, drawing from it maximum resonance and harmony.”

Now qualified to teach, I can share my experience and watch others enjoying their realisation that yoga is personal and can be a powerful ally throughout life – for every body.

RICHARD FEDORKO

VOLUNTEER OF THE YEAR

VOLUNTEER OF THE YEAR 2017 –TONY KANE!

Tony suffered a spinal cord injury 13 years ago and has been an inspiration to those with recent injuries as he doesn’t let it stop him from enjoying life. He is often at gigs & festivals to see his favourite bands. He loves driving, going on holiday and taking his dog out for walks. He eats well and exercises to keep in shape too. Tony always puts himself forward to get involved in anything peer support related. He is a huge asset to our team and we couldn’t do it without people that are as strong, as empathetic and down to earth as he is.

Our Peer Support Volunteer Tony Kane was voted as Volunteer of the Year 2017.

Throughout the past year Tony has shown great compassion towards all the patients in the Queen Elizabeth National Spinal Injury Unit, with many praising his down-to-earth attitude and ability to tell it how it is.

“I thoroughly enjoy working with Tony. He is an inspiration to other patients in the rehab workshops when he shares his experiences and demonstrates his dressing skills. His honest and open nature means that all patients can relate to him and approach him.”

AMANDA HOWAT Occupational Therapist

Spinal Injuries

Scotland would like to say a massive thank you to Apache North Sea Ltd for their generous donation of £30,000 to the charity.

THANK YOU

APACHE

The request for funding for Spinal Injuries Scotland came to Apache North Sea’s Bond Charity Programme’s attention through a nomination by Brian Seawright, who works on one of their offshore installations, following a life-changing accident of his colleague and friend, Stuart McMillan.

Stuart suffered a T6-7 spinal injury which rendered him paraplegic. During Stuart’s stay at the Queen Elizabeth University Hospital in Glasgow, Spinal Injuries Scotland provided Stuart with invaluable help, allaying fears and providing support and encouragement. Stuart has enjoyed sailing, swimming and hand-biking and will, because of the support of Spinal Injuries Scotland, compete in the Inter-Spinal Unit Games at Stoke Mandeville in April.

Apache representatives came to the office with Stuart and his wife for the official cheque presentation to the charity and to discuss the best use of the generous donation.

Thanks to all of you who have been hard at work fundraising for our charity. We are always so delighted to hear your stories, so please keep up the good work. Your efforts are hugely appreciated.

THANK YOU

Donates £20 monthly.

DEREK WALLS Donates £10.00 monthly.

GORDON FRASER Donated £30.00.

LYNDA EASTCROFT Raised £175 for us by selling Christmas cards.

WOULD YOU BE ABLE TO FUNDRAISE FOR US?

At Spinal Injuries Scotland we are dedicated to helping people who are living with a spinal cord injury. We need your help so we can be there –on the other end of the phone, in local communities and building relationships with decision makers. There are so many different ways you can make a difference, from a coffee morning, to running a marathon, to a gift in your Will.

If you are interested email info@sisonline.org for a fundraising pack filled with ideas and advice for your fundraising event.

JONATHAN GRAY

VIEWPOINT ON NEUROLOGICAL CONDITIONS

Now is the time for neurological conditions to take the limelight. While lots of work has gone on behind the scenes, it was only in 2017 that the First Minister announced the production of Scotland’s first ever Action Plan for Neurology Alongside this the Clinical Standards for Neurological Conditions are also being revised.

There are many different elements contributing to the development of the Action Plan; including prevalence data gathering and neurological service mapping. Essential to this work is gathering the views of people living with neurological conditions, and their experiences of services across Scotland.

The ALLIANCE is delighted to be leading a programme of consultation, in collaboration with the Neurological Alliance of Scotland, to gather and leverage the powerful voice of the neurological community in Scotland.

Together we plan to develop recommendations and priorities for the future of neurological services based on the voice of people with lived experience of these conditions. We are therefore using a number of ways to capture that voice, ensuring we understand the experiences of people with neurological conditions accessing services and their shared priorities. In order to do this, a mixed methods approach is being taken in order to get a breadth and depth of views. A review of existing information about experiences accessing neurological services has been undertaken a number of focus groups held and now a survey is being launched. Broad themes emerged from the initial research that address systemic challenges people face in accessing the services that they need and many of the reports begun to suggest how people would like the system to respond to these challenges. Therefore, with each ‘emergent theme’, this report captures ‘aspirations’ for improved neurological services and for how the

SPOTLIGHT

system could change to suit their needs and improve their care.

The survey is based on the themes emergent from the research and following the focus groups further themes were included.

Those themes are familiar to those of us working in this field; including issues like clear care pathways and care coordination, improved communication, education and support for carers. What has stood out as well though is support for people to live well, for rehabilitation or enablement services and for information and advice on a wide range issues.

The focus groups also raised the need for support though transitions of care; especially from children’s to adult services and also the impact of stigma and disability on social isolation and loneliness. These are all huge themes some of which reach way beyond the scope of this work but are a crucial part of people’s wellbeing.

The survey –which launches this –week seeks to more fully understand these themes and importantly what needs to happen if we are to really transform the future for people living with neurological controls.

Please share this with as many people with a SCI as you can, so that we can gain insight from as many people as possible. We will be sending the survey out by email, if you would like more information please contact us on info@sisonline.org.

AUDREY BIRT Associate Director The ALLIANCE REBECCA DUFF Chair of Neurological Alliance of Scotland

If you want hear more please email audrey.birt@alliance-Scotland.org.uk

JOIN SPINAL INJURIES SCOTLAND

Your support helps us be a national organisation which is committed to act as an agent of positive change for all spinal cord injured people, support those coming to terms with spinal cord injury, and influence decision-makers and designers as they shape the world for those with spinal cord injury. The free membership also allows you access to:

• Confidential advice and support from our office/or our team of peer supporters, all of whom have suffered a spinal injury

• Legal and Welfare rights advice from Digby Brown solicitors

• Our small grants scheme

• Reduced rates at Clober Farm

• Our quarterly magazine Spinal Life Scotland

• Dedicated healthcare home delivery service – provided by Bullen Healthcare You will benefit from your own dedicated personal adviser and a great range of complimentary items.

To join email info@sisonline.org or sign up via our website at www.sisonline.org

SIGN UP FOR A DIGITAL COPY

You can receive a digital copy of Spinal Life Scotland straight to your inbox

If you would like to receive your future copies of Spinal Life Scotland via email, then please complete the form on the Spinal Injuries Scotland website: www.sisonline.org

Alternatively, you can give us a call on 0800 0132 305 and sign up by phone, or email at info@sisonline.org

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