#StopPressureUlcerDay: Tips for prevention

#StopPressureUlcerDay: Tips for prevention

The 17th of November is #StopPressureUlcerDay and across the UK organisations have been sharing their best practise and raising awareness of pressure sores. To coincide with this, we’ve come up with our own top tips to help prevent them.


A pressure ulcer or sore is an injury to the skin and the tissue just underneath it. If you sit or lie in the same position for several hours, the pressure may cut off the blood flow to that area. This can starve the tissue of oxygen, causing it to die and a pressure ulcer will form. Often when we feel this pressure, the brain will send signals to let you know you need to adjust your position. However, if you have a spinal cord injury you may not feel the pressure build up because you have little or no sensation in that area or the ability to adjust your position. With this in mind, we’ve come up with some tips that can help you prevent a pressure ulcer:

  • Check your skin twice daily for any skin abnormalities or marks – anything that looks unusual.You should check your skin before you get up and when you return to bed. If you’re unsure about a mark on your skin, try applying pressure to it with your finger for a couple of seconds. If the colour remains the same and you don’t see blood flowing back to that area, it could be the beginning of a pressure ulcer.
  • If you wear tight clothing, be mindful of the friction that it creates against the skin. A lot of jeans will have tiny studs on the back pockets which could lead to a pressure ulcer. Similarly loose clothing may create folds that could also create pressure points on your skin.Clothing should ideally be of a natural material to allow the skin to breathe . If the clothing has some stretch, it will help reduce pressure when sitting in your chair.
  • Change your position regularly. ‘Pressure-relieving’ every 15-30 minutes will avoid putting pressure on one area and is a very effective way of preventing pressure ulcers.This can be most simply done by leaning forward in your chair. This will relieve the pressure over the bony parts of your bottom .
  • If you find a mark, think about whether there’s anything that you’ve changed recently in your routine that may have caused this: have you been using a new wheelchair, or a new cushion? Did you change your method of transferring? Have you got a new shower seat?
  • If you fall out of your wheelchair, it is essential that you check your skin for any bruises. A bruise or a cut may eventually become a pressure ulcer. If you notice either of these, make sure not to apply any pressure to those areas. They may take a long time to heal so you need to be extra vigilant.
  • If you notice something on your skin, but you’re not sure if it’s worth worrying about, take a photo on your camera phone. You can compare the mark to the photo a few hours later and see if there’s any change.
  • It’s incredibly important that you don’t ignore anything because the longer you wait, the worse it will get. If you find a pressure mark on your skin you should always stay off it until it’s gone. If you’re still concerned we recommend you contact your local healthcare professional, or your local spinal centre can also offer practical advice.

Further information on pressure ulcers can be found on the NHS’s website here and if you have any questions you can contact us on 020 8875 6723

A word with our founder, Mike Nemesvary

A word with our founder, Mike Nemesvary

Mike Nemesvary, our founder, set up Back Up in 1986 after his spinal cord injury. Mike who joined us recently from Canada to celebrate our 30th anniversary, tells us about the early days and what makes him most proud.


Tell us about your life before your spinal cord injury

My life was sports, sports and more sports!  After winning my 1st Canadian National Freestyle skiing Championship at age 15, I spent 10 years representing Canada and Great Britain.  I won the first ever World Cup for Britain and have 40 titles in my sport. By the 1980s, I had also established a career in film and commercials.  I was approached by the James Bond film producers, Albert “Cubby” and Barbara Broccoli and Tom Pevsner to help to choreograph and perform the stunts in the opening sequences of  “A View to a Kill”. Sadly, this was the last film I worked on prior to my spinal cord injury on May 18th, 1985.

What motivated you to set up Back Up?

After my very first sit skiing trip to Switzerland just seven months after my injury, I was filled with a sense of accomplishment, adventure and optimism that I wanted to share with others whose lives were affected by spinal cord injury.  Then, there were virtually no other organisations set up to offer similar opportunities.

Who else was involved in setting up the charity?

From my bedside at the Royal National Orthopaedic Hospital in London, my friends, Barbara Broccoli OBE and Jess Stock supported the concept of Back Up and used their vast influence within the film and ski industries to garner support.  Konrad Bartelski was also one of the notable figures who jumped on board to build up the charity.

The commitment of volunteers cannot be stressed enough – from Board and Committee members to carers and buddies on courses and our many fundraisers and supporters. Back Up would not be in existence today without the literally thousands of individuals who believed in our mission.

What was life like for people with spinal cord injury then?

Once you’ve left your spinal centre and rehabilitation, you often feel like you’re living in a “vacuum” cut off from the supportive community you relied on.  I guess I was fortunate that I had some resources, a strong support network of family and friends and a zest to carry on and redefine my purpose in life, albeit from a sitting position.

How have things have changed?

Originally we found our niche in offering adventure pursuits which helped people see their lives from a new perspective.  Now, we’ve expanded to helping all age groups through our mentoring, wheelchair skills, support back to work and school, and influencing which I think is fantastic.  I’m so pleased to know that we are sharing our “best practice” with the international community.

I’ve been a very strong public advocate for the rights of disabled people.  While some things have changed, the problems we face are often intangible.  Our quality of life is often dictated by people still seeing our disabilities before our abilities.

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Photography by Linda Scuizzato

What are you most proud of?

I’m most proud of how Back Up has grown into a mature and successful organisation effecting change on the international platform.  I’m proud that I had the opportunity to represent two countries and achieve most of my competitive sporting objectives.  I’m proud of becoming the first quadriplegic to independently circumnavigate the globe in my modified vehicle.  I’m proud to be with my partner, Mary Anne and assistance dog Jigger!

What were you most looking forward to when you visited the UK?

A glass of premium scotch! I was particularly looking forward to visiting our offices and meeting the many new individuals who are now “running the show”. It was fun reacquainting myself with some old friends who were pivotal in the early days.

What would you like to see Back Up achieve in the next 30 years?

Keep following the same path of steady growth and become “a force to be reckoned with” both in the UK and across the globe!

 

 

My platinum moment: Geoff’s story

My platinum moment: Geoff’s story

In December 2012, Geoff was at home when he suddenly blacked out. The last thing he remembered was hitting the floor before he woke up two weeks later in the intensive care unit. The cause of his blackout was a stroke which left him paralysed from the waist down. It was a difficult time for Geoff, but he tried to stay optimistic throughout his hospital stay and rehabilitation.

‘I knew the mind set I had to be in was a winning mind set. I had to get on with it and do it because you’re going to have to do it eventually.’

Geoff progressed quickly and was even released early from hospital. But things were different when he went home.

‘I felt like things were closing in on me and my world was getting smaller and smaller.’ 

A staff member at the Duke of Cornwall spinal injuries unit recommended Back Up and he decided to get in touch. After several phone calls, he was asked if he’d like to go on a multi activity course in Exmoor. This experience proved to be the making of Geoff. Prior to his injury, Geoff had been an outgoing, sociable person. The chance to talk to other people with spinal cord injury, and the encouragement he received, helped him feel like his old self again.

‘I needed that at the time. I was on a downward slope. But being there with other people in wheelchairs was so helpful. That weekend helped me be me.’

Geoff’s ‘platinum’ moment, as he puts it, was when he went swimming. He was very scared of getting into the pool because he was worried that his stoma bag would come off. Geoff had to push himself to get in, but he was so glad he did it.

‘‘If I hadn’t done that, it wouldn’t have been the same. One of the volunteers said to me ‘I’ve never seen someone look as scared as you did getting into that pool. But when I saw you hit the water, I thought I’d never seen someone so happy.’ I enjoyed myself so much and that did it for me for the rest of the week.’’

Geoff is still in contact with some of the people from that course and he remembers their words of encouragement to this day. Even a year later, just talking about the course brings back many happy memories.

Geoff feels a lot more positive about his life now and is excited to see what the future holds. He recently did an indoor sky dive to raise funds for Back Up. He enjoyed himself immensely and would recommend the experience to anyone.

‘‘I try and have as much fun as I can. Some days it doesn’t work like that but you have to treat every day as it comes. Next month, I’m going to an opening evening at the college. I want to take English and Maths. I would like to help people really, care work would be great – something like what Back Up did for me.’’

If you’d like to do something fun for money, we’ve got a big range of accessible fundraising events, including Kayak the Great Glen on June 4 – 9. To find out more about all our events click here, or email Kat (Katherine@backuptrust.org.uk) for more information.

Next Steps: Kevin’s story

Next Steps: Kevin’s story

Hi I’m Kevin Dwyer,

I’m a 42 year old man and I have recently taken a completely new direction in life as a Public Speaker and NLP Practitioner, speaking in schools to secondary students about having a positive mindset and the power of the mind.  This switch of careers has been inspired due to a life changing experience: I had a spinal cord injury.  On the 5th of May, 2013, I was just coming out of the bathroom when I passed out and fell over. I fell forward and landed on a box causing me to hyper extend my neck. I initially had no feeling in either hand and was paralysed from the waist down, however after some intensive rehabilitation – at St Georges Hospital, Tooting and Stoke Mandeville spinal unit – I soon regained some feeling in my hands and legs.

I feel incredibly blessed to be able to walk, even if only for short distances because I might not have been so fortunate. Every day I am thankful for the small things because I firmly believe we are the architects of our lives and it is our duty to make the most of every situation.

I went on the Next Steps course because I had previously been on another Back Up course and the experience was invaluable. I think the main reason that this course appealed to me was the opportunity to spend a few days with other people with a spinal cord injury who can walk. I wanted to understand how everyday life had changed for others, their trials and tribulations, how they coped on a day to day basis and if things I experienced were common to others, or whether it was just me. I honestly couldn’t have made a better decision!

The banter and camaraderie between a bunch of strangers, that built up straight from the outset, was incredible. It felt as though we were handpicked to be there together because we gelled almost instantaneously.  Scott and Holly had clearly put a great deal of thought into the structure of the course because from the first night things seemed to have a pretty natural flow. There were activities that allowed us to get to know one another and at times we had some pretty deep conversations. Other times we would be laughing for hours and the evening out at the comedy club was a stroke of genius.

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There was one thing in particular I wanted to get from the course:

I am able to walk, but the distance I can cover is very limited and I had never actually been out in public in a wheelchair.  It could have been fear, uncertainty, my own limiting beliefs, who knows? But I had never accomplished that and I was determined to do so.

Well the very next day we were split into two teams for a scavenger hunt and sent off on a mission to complete tasks on a list, requiring us to travel all over Bath town centre. There was only a slight element of competitiveness between the teams, well maybe a tiny bit more than slight.  One thing I was sure of was that I could never have covered the distance we did on foot so I had no choice but to run, metaphorically speaking, head on into my self-set goal.  Having a wheelchair skills trainer in our group gave me a huge amount of confidence, and allowed me to take on the challenge of being out in public in a wheelchair for the first time. I can’t thank Jacques enough for being right there whenever I needed him.

Post course, there has still been a great deal of contact between the participants which is really nice.  I am definitely more confident going out in my wheelchair when I need to so that’s also been a great takeaway for me.

My plans are to get involved with Back Up wherever possible, not just as a course attendee but hopefully as a volunteer so can I help contribute to their great work. What Back Up do for people with spinal cord injury really, really changes lives and, in my humble opinion, can’t be recognised highly enough.

If you’d like to find out more about our two Next Steps courses running next year, or any of our other residential courses, please click here or email Andy (Andy@backuptrust.org.uk)

Joe and Laura on Fun & Festivals

Joe and Laura on Fun & Festivals

Joseph Lockington

Four years ago, Joe had dreams of becoming a rock star. But a blood clot caused a stroke, which left him paralysed from the neck down.  Joe experienced depression during his rehabilitation, but he managed to come through it and he’s in a much better place now. He believes that with a bit of forward planning, there’s a lot of fun to be had.

‘‘It’s all about finding new ways that I can do things. When I went on the 13-17s multi activity course with Back Up, I did things I never thought I’d be able to do like abseiling, zip wire, sailing – there were so many things I just didn’t think would be possible.’’

Joe, 19, is now a Back Up youth advisor, which involves shaping the direction of our youth services. He is also at university, studying events management, and spends his time planning events for societies and charities as well as socialising with his friends.

He recently attended Reading music festival which was a huge milestone for him. Joe planned well in advance: he ensured the site was accessible, discussed electricity requirements for his hoist, and got a risk assessment. This meant that Joe could enjoy himself at the festival and – despite some challenges – it was a truly unforgettable experience.

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‘‘The highlight was seeing the Red Hot Chili Peppers. I’m a big fan and they were really amazing. I was really proud of myself for coming and my mates were too. They were so chuffed to see me there.’’

Joe now has his sights set on his next festival and a career as an events manager. For Joe, it’s all about thinking how to approach things differently, rather than dwelling on what you can’t do.

‘‘Never give up because you can still have great fun. Things will be different to how you used to do them. But that doesn’t mean you can’t have fun. You just need to look at it a different way’’.

Laura May

Laura was only 11 years old when a mistake during a routine operation left her paralysed from the chest down. The experience turned Laura’s life upside down, but she has never let her injury stop her from getting the most out of life.

She likes to go to as many festivals as possible and has been to Reading three times! Her first concert was ‘T in the Park’ back in 2013. Before that, she hadn’t been camping for more than a day and had a few concerns about the festival.

‘‘I was worried about using portaloos and if there would be accessible showers. I also didn’t know how I’d fare being amongst big crowds in rough terrain – what if I fell out of my chair?’’

Laura had a strong support network in her friends and they sat down beforehand and made a plan to cover all eventualities. She decided to bring extra catheters and medication as well as clothes for all kinds of weather.

‘‘I rang up T in the Park to apply for a space in the accessible camping site and a car parking space nearby. They had so much great information and sent me a personalised email about accessible showers and other facilities – it really set me at ease.’’

Laura has some very fond memories of her first festival, and had a great time with her friends and cousins, going to different venues and seeing her favourite bands.

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‘It was probably the best weekend I’d had in a long time. I’ve got so many good memories.’

Laura recommends doing a lot of research before going to a festival to ensure you have the best time possible.

‘‘Have a look at what other people are saying and email the organisers.  Attitude is Everything is a great website that reviews music venues and has volunteers on site at concerts. If you’re a power chair user, they even have charging points. They also have toilets where you can use your hoist.’’

Laura is just about to finish her degree in outdoor studies and is currently right in the middle of her dissertation. But she still plans to squeeze in a festival or two – if she has the time!

Please contact Ella (ella@backuptrust.org.uk) to find out more about becoming a youth advisor and other volunteering opportunities for under 18s.

Save the date:  ‘Back Up Fest’, the brain child of the Youth Advisory Group, is happening on 19th August 2017.  It will be a family fun day for anyone affected by spinal cord injury to come together, enjoy live music, food and lots more. Email Kat (Katherine@backuptrust.org.uk) or call her on 020 8875 1805 to find out more.