W hilst no longer chair, I look forward to continuing as a trustee under Faisal’s leadership and to see SIA – underpinned by you, our members – continuing to keep the SCI community’s needs, hopes and desires at the heart of all we do.
Claire Martin
As cliché as it sounds, it’s been a whistle-stop year since I b ecame SIA’s interim chair. We’d just embarked on a board effectiveness review, so one priority at board-level has been laying the foundations for stronger governance. This sits right at the centre of a good board and our role as trustees; perhaps you read my blog on our learnings from that process.
We also welcomed six new, brilliant trustees, including three members voted in by you. All this, whilst working collaboratively with the senior leadership team in developing our forthcoming organisational strategy – it’s no wonder the months have flown.
But as my tenure as chair comes to an end, so it begins for long-time SIA supporter and board member, Faisal Hussain. I am delighted to be handing these reins over to Faisal. His sound experience in governance, supportive and generous manner, and in-depth knowledge of the NHS mean we are in strong hands for the next three years of his term.
Firstly, I want to take this opportunity to say thank you to Claire who has led SIA through some significant and transformational governance improvements. During my tenure, I will ensure we carry on this journey towards continued improvement. Whilst these changes are key to the better use of resources and decisionmaking for the charity, ultimately they are good for you, our members, knowing we as trustees are acting in your best interests to maximise benefits delivered to you.
Secondly, I would like to thank outgoing trustees Pete Hamilton and Christa Dyson, for their service and commitment to SIA after completing their maximum three terms on the board.
They will be missed around the board table for their sound knowledge, experience and commitment to furthering the rights of SCI people, ensuring we continue striving in our vision for a fulfilled life.
Finally, I would like to say what a huge honour and privilege it is to serve as the new chair of SIA. This is a charity very close to my heart, and one with which I have been associated as a member since 1989. To this day I recall that whenever I was told “no you can’t do that” and was left feeling dejected and demoralised, I would pick up the phone and call SIA’s helpline, explain the situation and be told by the helpful, knowledgeable and empathetic person on the other end, “yes, of course you will be able to do that.” A good example of this was being told I couldn’t drive – and I have enjoyed doing that for over 34 years since my injury!
A bit about me – I am C5/C6 tetraplegic (complete). I live in Leicestershire and am married to Rachel, a former occupational therapist. I am a huge fan of Leicester Tigers RFU and England. I love theatre, live shows and music and have spent the last 15 years resurrecting my vinyl collection (yes, those black plasticky round discs with grooves and scratchy noises) to play on my turntable and hi-fi.
f.hussain@spinal.co.uk
“This
Established in 2018 to provide case management services to spinal cord injured people, SIA Case Management was underpinned by SIA and Bush & Co’s specialist knowledge and expertise in supporting people following life changing injuries.
Since then, SIA has been building a network of trusted partners and business members through which spinal cord injured people and their families can be connected to the support and services they need. We share our experience, expertise and the insight gained from 14,000+ members’ lived experience of spinal cord injury with all organisations in
our network. As such, SIA and Bush & Co have mutually agreed that the original aims of the SIA Case Management enterprise can now be achieved in a different way.
Bush & Co will still provide their own excellent case management services and, as a business member of SIA, will continue to benefit from our specialist expertise and enjoy opportunities to support our vital work. We hope that other case management providers will also join our business membership scheme so that, together, we can offer greater choice to the spinal cord injured people we support and strengthen our growing network.
Everyone should be able to use and enjoy their kitchen. This is why we created Freedom, to provide attractive, accessible and empowering kitchens.
Select from a range of specially designed features combining functionality and style, to create an independent living space; tailored to you.
Princeton, Providence Blue
Conquering fears, tears of pride and a whole lot of fun along the way! The 2023 SIA Healthcare ski trip was a huge success!
At SIA Healthcare we have always looked at ways that we can further support SIA and the SCI community. And so in 2019 we partnered with Teleflex and Freerider to run a ski trip for SIA members.
The trip, a fantastic few days in Northern Italy, was a huge success for everyone involved, not least for our group of determined SCI skiers who had either never skied before or not skied since sustaining their injury. Our amazing team of coaches showed them that being spinal cord injured was no barrier to being able to ski and the group had an amazing time on the slopes, conquering fears, learning new skills, and having lots of fun in the process.
Since the success of that ground-breaking trip, we have always wanted the SIA ski trip to
The following month, in March 2020, Covid hit and our plans to run the 2021 ski trip were put on hold for two very long years.
There were tears of frustration, followed by tears of joy and pride when members of the group realised their capabilities on the slopes and beyond
become an annual event, and in February 2020 a second group headed off to Folgaria, with the same success as the first.
So it was with huge delight that we were able to announce that the 2023 ski trip was to go ahead!
Two years of pent-up excitement finally culminated in a group of ten SIA members and four members of the Bullen Healthcare team,
meeting at Manchester Airport on 5 February ready to fly to Folgaria for three days of skiing. Dave Eastham, one of SIA’s support coordinators, arranged a meeting with the assistance team at Manchester to make sure that everything went smoothly at the airport.
Once the group arrived in Folgaria it was time to check in to the hotel, unpack, relax and get to know each other ready for the first day of
This is my first time skiing, they make it look easier than it actually is! We are learning to do something so unnatural but I'm excited to get out on the slopes and experience something new
I am excited and ready to get stuck in, the mountain looks beautiful. The team at Freerider have been amazing and have been a great support skiing the following morning. We understand that there may have been some slightly fuzzy heads at breakfast!
Monday morning dawned and everyone was up bright and early, not really knowing what to expect but wrapped up warm and sporting their new SIA ski trip woolly hats! It’s safe to say that yet again, the three days exceeded everyone’s expectations. There were tears of frustration, followed by tears of joy and pride when members of the group
realised their capabilities on the slopes and beyond. Evenings were spent talking about the day’s triumphs, and bonding over shared experiences.
The group members, with injuries ranging from L5/S1 incomplete, to C7 complete, achieved amazing things on the slopes, despite six of the group having never skied before, proving that accessible skiing really is for everyone, regardless of level of injury.
The Freerider team, who supported the skiers at every
This trip has been an outstanding experience for myself and others with SCI. Having not travelled since my accident, the team at EasyJet ensured that everything ran as smoothly as hoped which has taken away my initial fears of travelling. With the help and support of Freerider I have proven to myself and others that anything is possible!”
stage, specialise in adaptive skiing and have worked with people with all levels of spinal cord injury. They know how to encourage people out of their comfort zone, in a friendly and supportive way, and to help them achieve their goals. We boarded the flight home tired, but with an enormous sense of pride at what everyone had achieved. We will be running the ski trip again in 2024 so do keep your eyes peeled later in the year for details on how to get involved.
SIA Healthcare is a collaboration between SIA and Bullen Healthcare, a fourth-generation, family-owned independent Dispensing Appliance Contractor (DAC). As the UK’s largest independent DAC, Bullen are able to always put the needs of their customers first, meaning that customers have the freedom to choose whatever products suit them and their lifestyle without fear of products being changed.
To find out more about SIA Healthcare, call us now on 0800 023 8841 or visit spinal.co.uk/get-support/sia-healthcare/
Additionally, through the online survey, which was completed by 586 people in 2022, we really hope to learn what you want from SIA and what we can do to help you and others.
In the last issue of Forward, we shared with you some of the key findings of our annual ‘What Matters?’ survey.
As you know, SIA conducts this survey to further understand and inform our thinking around what really matters to the spinal injury community. It provides an invaluable insight into living with SCI and what barriers exist to living a fulfilled life.
Most people who provided us with detailed responses asked for opportunities to meet up and gain support, access facilities and to see our volunteers and support network coordinators. Many also asked for SIA to lobby and campaign for change around areas including benefits and disability rights.
The next most popular theme was for SIA to support the NHS, healthcare professionals and GPs to gain a greater awareness of spinal cord injury.
Our campaigns manager Dave Bracher says the direct and honest experiences of everyday life shared through ‘What Matters?’, play a pivotal part in SIA’s efforts to make change at the highest level. Please read just how your feedback assists Dave and the campaigns team on the next page.
Meanwhile, the SIA Academy continues to provide education for health and social care professionals through our clinical team of specialist nurses and our support network team, who are all SCI themselves, as well as engaging with NHS centres and of course our members across the UK.
These are just some of the ways that we have listened to and acted on what you have told us you need.
As you’ll see from the word map to the left, which was put together using keywords from your responses, you’re asking us to “help support more SCI people.” And that’s exactly what we plan to do this year and moving forward.
GET INVOLVED!
Tell us ‘What Matters’ to you!
Our 2023 survey closes at midnight on 14 March. Please visit: bit.ly/WhatMatters2023
or scan the QR code to get started
Campaigns manager Dave Bracher says it’s your powerful voices shared through the ‘What Matters?’ surveys that help to influence change.
“The parliamentarians and decisionmakers I need to meet, and try to influence, are generally persuaded by two things – good, reliable data and people’s compelling stories,” Dave explains. “The experiences shared through ‘What Matters?’ about the impact of SCI on people’s lives, and the overall picture it paints of the SCI community, help me illustrate the desperate need for change in the way society and our healthcare system engages and deals with individuals with long-term and complex health conditions like spinal cord injury.
"Furthermore, your feedback from the survey helps to inform our campaigns programme moving forward.
"For example, the most recent survey showed that 72% of respondents rated bowel management as their top physical health concern. Many told us how worried they were about visiting a general hospital or care home, as they feel staff are untrained in dealing with SCI patients.
"One survey respondent said: 'General hospitals MUST train staff in the basic care of SCI. Bowel management is non-existent in a general hospital and this causes the most distress and danger to a spinal patient.'
"We are using this as a starting point for a campaign in 2023 on bowel care (see page 48-49 for more information), so we can improve the level of understanding in non-specialist medical settings and ensure more staff are trained to deliver this essential aspect of care to SCI people. We’ve successfully campaigned on bowel care previously, but the impact of the pandemic and current NHS staffing issues means the time is right for us to redouble our efforts in this area. ‘What Matters?’ will be an essential part of this campaign.
"Thank you to everyone who’s taken the time to complete the survey. We look forward to hearing your responses from the 2023 survey.”
“I need SIA to be an effective campaigning operation to help change my rights and access to care, health, and equal rights.”
“Continue to provide good peer support to patients whilst in hospital. Advocate for change in areas where it is harder for SCI people to access things. For example, I am exempt from paying road tax, but have to physically go to a post office to get the form rather than being able to complete and submit online.”
“Campaign to NHS for increased funding to SCI rehab centres to enable/increase their abilities to support those they are currently rehabbing and seeing as outpatients. And to extend regional services so those that leave rehab continue to get support.”
PUSHING FOR
“Educate government and achieve social, financial and cultural support that allow those with SCI to afford and have access to rights, finances and services which make SCI life not just bearable but fulfilling.”
Every one of us is unique. Even two people with the same level of spinal cord injury (SCI) will be affected differently based on factors such as age, fitness, mental wellbeing and cultural background, for example. It is for this reason, that the help and support each SCI person needs, is specific to them.
Occupational therapy (OT) is a profession which prides itself on being holistic and seeing the individual rather than their diagnosis. I have been working at Spinal Injuries Association for nearly a year, and I have been asked to write about my role, and about the profession itself.
In the 1940s, Ludwig Guttmann became head of the National Spinal Injuries Centre at Stoke Mandeville Hospital. He was instrumental in seeing patients’ potential for rehabilitation and ultimately founded what we now know as the Paralympics. Around this time, the ‘rehabilitation movement’ was in full force and occupational therapists began treating people with a variety of injuries.
Today, OTs are found working in mental and physical healthcare settings, in the community, in schools and prisons, military settings, private companies and charities. The focus of their work
SUSIE WOOD SCI clinical specialist
is to increase the independence, function and wellbeing of those they treat. Within the UK’s regional spinal cord injury centres, OTs help patients to adapt and meet rehabilitation goals. I worked in both Hexham and Middlesbrough regional spinal cord injury units, doing exactly that. My work here at SIA is similar but more varied. Some of the individuals I work with have not been treated at a regional spinal cord injury centre and are just starting to understand the way in which their injury impacts their function. Whether the injury is a result of trauma, illness or a cancer diagnosis, patients’ goals are similar; they want to have a daily routine which works for them, within an environment which is accessible. To be able to join their family and friends for activities, to access the local area and participate in work, school, sport and leisure activities.
The work of an OT addresses these concerns and involves giving information, signposting to other services, practising activities and discussing coping strategies. My work involves both 1:1 and group settings (for example the community support groups) and I learn so much from those who have lived experience of spinal cord injury.
Meet Susie Wood – SIA’s very own occupational therapist (OT) working as part of our clinical specialist team. Here Susie explains what OT is and what benefits it offers SCI people
SIA clinical specialist Susie Wood introduces two new SIA Academy courses:
Alongside our clinical role, it is the responsibility of the SIA clinical specialist team to provide education. This comes in the form of our SIA Academy courses, which are all CPD (Continuing Professional Development) accredited.
Delivering virtual (online) and face-to-face teaching on topics such as skin, bladder and bowel management, we provide courses for healthcare professionals and carers across the country, to help increase their knowledge of spinal cord injury.
Kara, 36, from West Yorkshire started using SIA’s occupational therapy service in August ’22.
“Despite being spinal cord injured for more than three and a half years and having lots of amazing support from SIA’s Andy Wharton, I had never used any occupational therapy services before I started seeing Susie Wood just a few months ago. She has helped me in so many ways. We talk via phone and meet in person to discuss ways I can move forward with aspects of my life and health.
I would recommend seeing an OT to anyone with a SCI. They are specifically trained in looking into areas of life where you may be struggling
"She helps me with my daily routine, helps me plan for future development and shows me techniques and advice on how to stay as independent as possible.
"At the moment she is helping me plan to develop my wheelchair skills, but she helps with so many of the challenges that come up in life when you are spinal cord injured.
"I would recommend seeing an OT to anyone with a SCI. They are specifically trained in looking into areas of life where you may be struggling and then putting a plan together to help with those areas.
Plus, Susie is so lovely she would make anyone feel comfortable and at ease!”
The full list of SIA Academy courses can be found on the SIA website and I am delighted to announce that this year, there are two new academy modules being offered.
Mark Jarratt, SCI specialist nurse for the Greater London area, has developed a teaching package about respiratory care for people with spinal cord injury. This will provide healthcare professionals with more detail relating to the importance of managing respiratory issues.
Secondly, I have produced a teaching module for occupational therapists and physiotherapists
The new SIA Academy module for therapists will address issues such as pressure care, moving and handling, seating, environmental controls and wheelchair provision, as well as giving insight into spinal cord injury rehabilitation.
Details of all SIA Academy training courses can be found on the SIA website spinal.co.uk
In the last of our three-part series, registered nutritional therapist Marina shows us how to maintain skin health and improve wound healing through our diet
MARINA LOGACHEVA Nutritional therapist @wheelchair_nutrition
Following a spinal cord injury most people are left with skin that is more vulnerable, often leading to pressure ulcers and other skin conditions. Nutrition can be a significant factor for both skin health and pressure ulcer recovery. Combine it with regular skin care, pressure relief techniques and sleeping strategies, and you’ll be armed with a winning plan to protect your skin.
Why our skin is more vulnerable post-SCI
• The loss of nerve connection from the skin to the nervous system below the injury level, makes our skin thinner and more vulnerable
• Slowed circulation (due to lack of muscle function) contributes to slower wound healing below the injury level
• Many people with SCI have vitamin deficiencies which are associated with poor wound healing
• Burns, ulcers and other skin injuries can go unnoticed and/ or untreated for longer due to a decreased sense of pain below the level of injury.
Nutritional strategies to maintain skin health and prevent pressure ulcers
What you eat can significantly affect the health of your skin. Below are the top four changes you can make to your diet to promote good skin health post-SCI
Eating protein is essential for the repair of tissues and skin health.
To prevent pressure ulcers, focus on having a serving of protein 2-3 times a day. Good sources of protein include meat, poultry, fish, milk, yoghurt, cheese, eggs, soya, Quorn®, tofu, nuts and seeds and pulses.
When you’re dehydrated, the skin becomes dry and loses elasticity, which increases the risk of pressure ulcers. The usual ‘8 glasses of water per day’ is a good rough guide. If plain water is not your thing, explore other options, such as coconut water, diluted juices, decaffeinated coffee or herbal teas. Plan drinks into your day as your body may not always tell you that it’s thirsty.
Eat a rainbow of colourful fruits and vegetables and aim for at least 5 or more a day. Aim for half of your plate to be filled with vegetables at each meal. Broccoli, cauliflower and brussels sprouts are all high in Vitamin C and other antioxidants, which help to maintain healthy skin.
High levels of omega-3 fats have been shown to play a central role in the health of the skin. They improve the quality of the skin, reduce inflammation, supply the building blocks for healthy skin cells, maintain the integrity and elasticity of the skin, as well as prevent loss of moisture, which can contribute to skin breakdown. Omega-3 fats are found in walnuts, oily fish (salmon, anchovies, sardines, mackerel) and flax seeds.
Eat a variety of foods every day to get the calories, protein, fluids, vitamins and minerals you need to keep your skin healthy. If you have a poor food intake or can’t manage a varied diet, you should consider taking a multivitamin and mineral supplement, but please discuss this with your spinal consultant or GP before deciding.
Pressure ulcers increase the energy needs of individuals with SCI. Focus on nourishing foods and avoid foods with a high sugar content, as bacteria thrive on sugar and can make infections worse.
Iron
Iron helps to maintain blood haemoglobin levels and plays a critical role in oxygen transportation. Good sources are meat, fish, eggs, beans, pulses and green vegetables.
Vitamin A
Vitamin A stimulates the growth of the base layer of the skin, maintaining skin integrity. Good sources include meat, fish, dairy, squash, eggs, kale, carrot and sweet potato.
Vitamin C
Vitamin C activates your white blood cells to fight infections. Vitamin C is not stored in the body, so you need to consume it with food every day. It is found in most fruits and vegetables, but is destroyed during the cooking process, so don’t overcook your vegetables. Where possible, steam them.
Zinc is important for making new skin tissue, helping wounds to heal. Zinc-rich foods include fish, lean red meat, oats, poultry, nuts, pumpkin seeds and shellfish.
Increase your protein intake if you already have an ulcer, as it helps to repair body tissues.
IF YOU’VE ALREADY GOT A PRESSURE ULCER, INCREASE YOUR INTAKE OF THE FOLLOWING:
With Brain Awareness Week taking place from 13–19 March, Joy Sinclair takes a look at coping with memory loss as you age with SCI
Memory might be described as the process of absorbing information, processing it, storing it and then being able to retrieve it at a later date.
THE AGEING BRAIN
On its own, SCI does not cause memory loss, but many factors may contribute to memory loss following SCI. These factors can include:
If you suffer from severe memory loss, it would be wise to consider creating a Power of Attorney.
Ageing
well consultantAs we age, changes in brain function can influence the way we live our lives. We may be noticeably slower in completing daily tasks, take longer to complete the crossword, forget a close friend’s name when introducing them or need help to complete a once simple piece of knowledge. But the ageing brain can come with positives too, such as better judgement and decision making, wisdom and the ability to deal with negative thoughts.
• A head injury sustained at the time of your initial trauma – this can remain undiagnosed until symptoms become apparent some weeks or months later
• Chronic fatigue and/or pain
• Long-term use of certain medications, such as analgesics and antidepressants
• Mental health issues
• Reduced oxygen to the brain, as can occur in impaired respiratory function.
We have all mislaid our keys or forgotten why we entered a room. This can be annoying but is not necessarily a sign of declining memory.
Familiarise yourself with what is normal for you and your age but resist the temptation to compare yourself with others. We are all individuals, ageing at different rates.
Family members or friends may notice subtle changes in your behaviour, so try to engage with those closest to you if you feel your ability to retain information is changing.
• Keep to a regular daily routine, as much as possible
• Make a list each day of things to do but try to avoid covering the fridge and other surfaces with lots of Post-it notes, as this can prove overwhelming
• Avoid too many distractions
• Manage stress levels / stressful situations
• Have realistic goals and timeframes, and don’t be shy about enlisting the help of those closest to you
• Work with an occupational therapist if necessary
• Avoid loneliness
• Repeat a skill regularly; this helps the brain to recognise it
• If you immediately forget someone’s name when introduced to them, try to develop your own method to overcome this. Word-association can be helpful, using a word that rhymes with their name.
If you are worried about memory loss, book an appointment to see your GP. They may carry out a physical examination and take blood for testing. You may be asked a series of questions, such as, what prescription medications do you take, and when did you first notice problems with your memory? You should disclose the details of any serious medical issues, your SCI and any recent major stressful events in your life, such as loss of a partner.
• Lifestyle choices: follow a healthy diet and keep well hydrated
• Excessive alcohol can seriously affect your memory so try to stay within safe limits
• Reduce or give up smoking
• Exercise: take regular physical exercise, within your capabilities
• Maintain regular brain exercises, such as crossword puzzles or learning a language, taking up a new hobby or reviving past skills
• Get sufficient quality sleep
• Social interactions with family and friends, especially playing with grandchildren. Regular contact with other people will help avoid feelings of isolation and loneliness.
For more information on memory loss, please follow the links below headway.org.uk or ageuk.org.uk
Family members or friends may notice subtle changes in your behaviour, so try to engage with those closest to you.
Adapting your home after a spinal cord injury can be a daunting prospect. Here we bring together top tips, advice and suggestions from experts alongside real life experiences of home adaptations from those within the SCI community
Entertaining friends and family has always been a big part of Izzy Hussain’s life and she wanted to ensure an adapted kitchen would allow her to continue doing that after her spinal cord injury (SCI).
A full-time wheelchair user from Milton Keynes, Izzy, 34, sustained a SCI after a car accident in 2015. When it came to buying a new home, Izzy’s occupational therapist recommended experts – Adam Thomas, accessible design consultant, and Tara Neil, kitchen retailer – to help with creating an accessible kitchen which would allow her to cook while hosting and socialising.
Izzy chose Symphony’s Freedom range which showcases unique features to support independent living scenarios without compromising on safety, storage, smart flexibility and of course, style!
“I now have the freedom to cook what I want, when I want,” said Izzy. “This new style of kitchen allows me to be independent and spontaneous, which reflects my personality.”
• An ‘island’ on two levels, with fixed lowered height prep space and induction hob to cook and entertain at the same time
• A pull-out table, doubling up as a place to safely transfer dishes from the oven to the island, and as preparation space
• A pantry/tall larder with pull-out drawers providing easy access to dried food and tins
• A NEFF hide and slide oven, after seeing good reviews on a Facebook spinal group.
For more information on Symphony’s Freedom range visit: symphony-group.co.uk/brands/freedom/
Adam Thomas has over 43 years’ experience designing accessible kitchens. He sustained a T3 spinal cord injury after a motorbike accident when he was 17. Adam is a disabled rights campaigner and former SIA trustee
ADAM THOMAS Independent design consultant adamthomasconsultancy.com
What essential aspects should SCI people consider in adapting/ designing a kitchen?
On a practical level, think about a couple of points that will make life much easier and safer. The first is always having a worktop next to an oven so you can lift things seamlessly without having to reposition your chair or take a step. The other is trying to have a continuous worktop which includes oven, hob and sink – it reduces having to lift heavy hot things from one surface to another.
If you have the budget, I recommend a rise and fall worktop with a waterfall edge as it helps with all stages of life, and different height chairs make the kitchen accessible for everyone.
What issues face your disabled clients in designing a kitchen to meet their needs?
We’re still finding that, for those clients receiving settlements, there’re unrealistic amounts being specified for kitchens. Rise and fall worktops and waterfall edges –which stop liquids spilling – these all add to the price but are things that every disabled person should have specified for them.
In some cases, people are considering digging into money they’ve put aside for their care plans, in order to fund a fully accessible kitchen. That shouldn’t be a decision they have to make.
There are many positive things we can do to make disabled people more independent in their kitchens. I do most
of the cooking at home – I love creating meals and cook from fresh daily so I really know from a user’s point of view what works. Having used kitchens that aren’t designed correctly, I know how frustrating it can be. For example, if you’re a manual wheelchair user, and you’re holding something hot straight from the oven, how do you get that to the worktop? You’ve either got to put it on your lap and risk scalding yourself or ask someone for help. A specialised shelf which slides from under the oven solves this problem.
What about those without a big budget?
Good design shouldn’t cost a penny more. I’ve worked out ten design principles over the years. A lot of accessible design is formulaic but it’s up to the designer to be creative and work within those principles. It’s about making choices based on your budget, for example, some people might choose to spend it on granite worktops – but you can also do it with laminate for a fraction of the price.
How far has accessible kitchen design come since you’ve been working in the industry?
It’s come a long way – but there’s still a way to go. When I was brought on as a consultant for Symphony, they asked for a wish list of things every accessible kitchen should have. They have put the whole list into practice with their Freedom range.
To have that in place and to have recognition from the industry makes me feel genuinely proud.
“Good design shouldn’t cost a penny more,” says Adam.
For anyone living with spinal cord injury (SCI), access around the home can be a challenge. Physical barriers to wheelchairs and walkers can impact on rehabilitation, enablement and inclusion. How can you adapt your home, so it becomes a positive environment?
Here I share a few tips from 20 years of experience assessing clients with SCI…
Home life without tackling stairs can help normalise a complex time. Access to upstairs rooms can still be achieved by choosing a homelift. When you consider the alternatives, such as costly ground floor conversions, or stairlifts which require potentially risky transfers, I often recommend homelifts as the most appropriate and cost-effective solution. One such client is racing driver and full-time wheelchair user Aaron Morgan.
In 2006, Aaron sustained a T6-7 spinal cord injury after a motorsport accident. Upon returning home, he was unable to get upstairs without assistance, until a homelift helped reinstate self-reliance and confidence.
“All the stress of worrying about getting upstairs has gone,” Aaron explained. “I no longer need to rely on someone helping me. It’s lovely that I can tuck my stepson in and read him a bedtime story – I’ve not been able to do that before. It feels like I have the same freedom in my home as I have on the track.”
Supplier tip: stiltz.co.uk/
With seamless access between floors solved, we can consider other rooms in the house too.
If your home has a threshold or steps then they should be replaced with either a temporary ramp, concrete slopes or a platform lift. Ideally all doorways should be widened to 900mm and doors that open automatically can add a real advantage. Consider parking provision and its access to your home – can you introduce drop kerbs, hard standing, clear lighting or a wider driveway?
Supplier tip: portaramp.co.uk/
“I have the same freedom in my home as I have on the track,” says racing driver Aaron Morgan.
A successful bathroom layout provides both suitable space and practical access for a wheelchair or mobility aid user. Baths with powered bather transfer seats enable safe bathing or if a wet room is preferred, carefully positioned grab rails will offer stability and safety. Shelving and storage within easy reach also reduce risks of falling, along with additional lighting and anti-slip flooring.
Supplier tip: g360bathrooms.co.uk/
You could consider relocating a bedroom to the ground floor or installing a
When access to the room is achieved, the bedroom design is worth thinking about. Are the carpets too thick for easy propulsion? Can you have custom built accessible wardrobes, motion sensing lights and a profiling bed?
Supplier tip: theraposture.co.uk/
Many considerations associated with other rooms are also true for the lounge –from suitable furniture and clear lighting to space and no clutter. Furniture at the right height for wheelchair transfers will help avoid unnecessary risks and powered adjustment, such as rise and recliners, will maximise postural comfort and flexibility.
Supplier tip: recare.co.uk/
These suggestions all highlight how an accessible home is intrinsically linked to successful living with SCI.
Occupational therapist and product supplier assessments in the home can be critical for determining which adaptations are suitable and allowing time for your own research is always invaluable. By making an informed decision, your SCI outcome will always be more positive.
Gaining maximum independence lay at the heart of David Holmes's plans for building an adapted home after his spinal cord injury. Our trusted partner Irwin Mitchell helped create a financial plan which allowed him to do just that…
ED TOMLINSON
Financial planner at Irwin Mitchell edward.tomlinson@ irwinmitchell.com
Our client, David Holmes, 39, from Leigh-on-Sea, sustained a C7 spinal cord injury while working as a professional stunt man on a major film franchise in 2009.
One of the things he was able to do with his compensation was build a home specially adapted to his needs. We helped by creating a financial plan to make sure his compensation would cover the cost of designing and building the house, while continuing to give him an annual income. The multi-year build included liaising with architects,
quantity surveyors and builders to ensure David was getting the best home possible. Working with an architect to design a wheelchair-friendly home ensured David could live independently. Some of the adaptations included:
• Doors and lights remotely operated from a tablet
• Lifts between floors
• Doors that slide rather than swing open
• Modified kitchen appliances
• Bathroom designed to fit his wheelchair
• Adapted bed to make it easier getting in and out
David Holmes.“Words can’t describe how happy I am here, how independent and how much these adaptations have helped my confidence, allowing me to live a fuller life, whether that’s socialising with friends or tackling my rehabilitation,” said David.
“If all people gained this level of independence, then disability wouldn’t be so much of a taboo."
Everything in David’s house is designed with his needs in mind. An adapted kitchen means appliances, are at his level and easy to use. The bathroom is compatible with his wheelchair, meaning he’s able to have privacy when he most needs it.
David’s injury affects his hand function, so adaptations have been made to everyday appliances such as special push-button taps in the kitchen and bathroom that can change water temperature. All lights and doors in the house can be controlled via a tablet.
The tablet also allows him to control the front door and check the video link before letting anyone in – especially important if he needs to call one of his carers at night. It means he doesn’t need to always have someone in the house with him, and in emergencies he can remotely let someone in himself and still feel secure.
We worked with his employers and their insurers to ensure we could secure the support and funds necessary for David to live as independently as possible and to undergo extensive rehabilitation both mentally and physically to help him come to terms with his disabilities.
For people who suffer with limited mobility, an adapted house is a large part of recovering some of the independence that they were previously used to.
For those needing to adapt their home due to illness or disability, the disabled facilities grant (DFG) can be helpful. It is means-tested and applicants need to meet strict criteria. Your local authority can assist you with this, although there may be a waiting list for assessment. The ownership of your property and needs of all occupants need to be considered. You can learn more here gov.uk/disabled-facilities-grants or by scanning the QR code.
Susie Wood, SIA’s spinal cord injury specialist and occupational therapist said: “The majority of people requiring house adaptations, will need to contact their local authority. Each individual’s functional ability and environmental circumstances will be different. It is sensible to acknowledge that the assessment process can take time due to local processes and funding availability. The wait
for home adaptations is frustrating and life can feel like it’s on hold. Sometimes local authorities will give you a quick answer as to whether you are likely to meet the means test criteria. You can then decide what action to take. If your property belongs to a landlord or housing association, you need their permission for any major adaptations. If you don’t plan to stay in a property long term, local authorities may not agree to complete major adaptations. It is worth noting that equipment provision is different to this.”
At SIA, we’re always looking at ways we can enhance our current offering. If you feel that information or a forum about home adaptations would be useful, please let us know and we’ll work to create a practical learning opportunity around this subject. Please contact forward@spinal.co.uk if this would be useful.
Active and passive movement (with or without motor support)
Increases mobility
Strengthens the muscles
Improves levels of stamina and flexibility
Encourages cardiovascular system
Exercising of legs and/or arms is possible
Improves metabolism and vitality
Exercising is possible from a chair or a wheel chair
MADE
IN
Simply scan the QR-Code for more information about the THERA-Trainer tigo. Visit our website for future updates, new products and much more –www.thera-trainer.co.uk
s the official charity of one of history’s most successful Formula 1 teams, SIA and our members continue to benefit from our unique relationship with Williams Racing.
The significant platform Williams provides has given SIA an incredible opportunity to share stories and raise awareness about spinal cord injury (SCI) over the years.
From numerous events and sponsorship opportunities which have helped generate more than £150,000 towards the services we provide, or from return-to-work opportunities offered, our friends at Williams Racing have helped position SIA as one of the UK’s leading spinal cord injury charities – and in ensured we continue providing essential services to SCI people and their families.
Our association began after Williams founder and team principal, the late Sir Frank Williams, was paralysed following a car accident in 1986. He and his family, including daughter Claire Williams who would go on to become deputy team
principal, benefited first-hand from SIA’s support after his life-changing injury.
As part of Sir Frank’s legacy to the SCI community thereafter, Williams Racing announced SIA as their official charity partner in 2015. Claire was appointed SIA’s vice-president in 2016, becoming a true ambassador for our cause alongside her father. As one of the sport’s most recognised and respected people, Sir Frank nurtured a relationship with SIA based on mutual respect and understanding, becoming a passionate advocate and using his influence to highlight the challenges faced by SCI people and calling for better treatment and support.
Sadly, Sir Frank passed away in 2021, but his legacy to the SCI community remains secure in the committed hands of all at Williams Racing, as the team continues helping raise the profile of SIA – and the voices of SCI people.
All proceeds raised through Williams Racing charitable initiatives are gratefully received by SIA and have involved everything from employee cake sales to providing ‘money can’t buy’ experiences
for SIA-hosted charitable auctions. The partnership also provides SIA with access to the Williams Racing facility for various fundraising activities, with each event designed with accessibility in mind.
Meanwhile, the Williams team is dedicated to providing the best possible experience for all its fans. Ramps and lifts provide wheelchair access to all areas of their HQ, there are designated accessible parking spaces and restrooms equipped with wheelchair-accessible stalls. Staff members trained to assist wheelchair users are also on hand to help.
Williams Racing HR Director Nicola Salter said: “Williams Racing continues to ensure our facilities and, most importantly, our team is accessible to all fans from all backgrounds, regardless of their physical abilities. We follow in the path of our founder, Sir Frank Williams, to ensure everything we do as a team is accessible for anyone. As we develop and grow, we continue to look at our infrastructure and consider how we can make it accessible for all – ensuring we continue to attract the best talent.”
FURTHER INFORMATION
Please visit: williamsf1.com or scan the QR code
Returning to work for the first time can be one of the greatest challenges facing those with SCI. Over the years Williams has offered invaluable work experiences to our members, helping those with injuries regain their confidence as they take the next step towards rehabilitation.
Here one of our support coordinators, Jack Mannings, shares his experience of working at Williams Racing.
“I sustained a C5 spinal cord injury in a road traffic accident in 2015 when I was 20. Paralysed from the chest down, with limited arm movement and no hand function, finishing university, let alone finding a fulfilling career seemed impossible.
"I’d planned to join the army but needed to re-think. Although I defied the experts and graduated from university, it highlighted the limitations I’d have to overcome if I were ever employed full-time.
"I was given an incredible opportunity when offered an internship at Williams Racing. At first, I was apprehensive but soon learned I needn’t have been.
"Accessibility at their Oxfordshire HQ felt so integrated you almost don’t notice it – rare in a world where accessibility is often a tacked-on, seemingly inconvenient afterthought. If the buildings were reassuring, the people were even better.
"The whole team was so welcoming that I never felt out of place. Too often, when people meet someone with a disability, they are far too worried about offending the person – it can feel like they’re walking on eggshells. At Williams, this never felt the case. Williams's people are its strength, starting with the late Sir Frank. Every day he would greet everyone as they passed by, even an intern like me. I learned so much from him during the time I was there.
"One of Williams’ lawyers, Matt King, who secured his job with SIA’s help, will forever inspire me. Sadly Matt passed away in 2021. He had a high cervical injury but never let that stop him. He showed me the only real limitations we faced were the ones we set ourselves.”
Do you remember those toy ducks that toddlers pull around with feet that go splat, splat, splat as they spin? That was me.
After being jettisoned from my wheelchair, I finally came to rest about a yard from the large and looming bumper of a delivery van, its driver unable to quite believe his eyes. A close shave you might think, and you’d be right.
Let me set the scene for you, dear reader, A mile or so from my house lies my favourite pub, the friendly and picturesque Frog & Nightgown with warm beer and pork scratchings, perfect on a cold day. The pub is down a steep hill, so I tend
to bolt on my ‘fifth wheel’, get some exercise and pick up speed on the way down. It’s usually deserted, so terminal velocity can be reached quickly, making life quite exciting.
Braking is a bit hit and miss. Your hands get hot gripping the push-rim so there is only so much speed you can scrub off. Fortunately, so far, this rarely-used country lane has proved, well, rarely used. Until today. From around the corner roared the classic white van but, as it’s a single lane, it had no real place to pass me and my high-speed wheelchair. It applied brakes at a formidable rate, creating brown-trouser moments for all occupants, I suspect. I did the same, instantly locking up my wheels with my hands and thus forgoing any real sense of direction. The wheelchair, with me as just a mere passenger at this stage, swerved to the left, up the bank and into a hedge. Gravity then overcame momentum and re-asserted itself.
While the chair went up, I went down. Down the bank and down into the road.
My daughter, Tilly, was desperately attempting to corral me back onto the grassy bank against these inexorable gravitational forces, but with little success. Picture once again, the duck with ‘splatting’ feet.
There was an additional car behind me, which fortunately stopped well short and the whole chaotic disaster came to halt before any real damage was done. A quietness descended on the lane for a few moments before doors slammed and willing hands began to rally round and attend to the strange business of helping me back into my chair. With some gentle aural direction, I was righted and pointed back in the direction of the Frog & Nightgown.
It turns out, I didn’t escape scotfree. I had grazed arms and legs and a rather bruised ego. Still, as road traffic accidents go, it was relatively minor and I gratefully ended up in the warm F&N (rather than the cold A&E) clutching a pint of Harvey’s and a handful of dry roasted. This certainly helped alleviate the situation, but I ached for three days after.
And the moral of this story, dear reader?
Don’t be an idiot!
Stuart Butchart was 29 when he was shot while travelling in Guatemala, with the bullet severing his spinal cord. Now chief scientist at BirdLife International, Stuart, 50, has travelled around the world in the name of conservation, recently returning from the UN Biodiversity Conference (COP15) in Montreal, shaping global conservation goals and targets. He shares his incredible story.
Q: Tell us about your early life and how you became so fascinated with birds?
A: I was given a pair of binoculars for my eighth birthday, and I remember my grandfather showing me a Spotted Flycatcher in the garden. In my early teens I crawled under a barbed wire fence around a lake to watch a pair of displaying Great Crested Grebes. I also had a biology teacher who used to take us to local nature reserves. I was lucky to have lots of brilliant early experiences that turned me into a keen birder.
Q: How did that then become the career you have today?
A: As an undergraduate, I organised and raised funding for several projects undertaking bird and mammal surveys
in protected areas in various tropical countries. On one trip in eastern Paraguay, I remember emerging from lush, dense, species-rich forest and stumbling into an apocalyptic landscape beyond, where all the trees had been cut down and burnt and the land turned over to cattle pasture. Seeing the devastation, I knew then that I ultimately wanted to work in nature conservation.
Q: Can you share the story of your injury, please?
A: I was 29 years old and travelling with a girlfriend. We had crossed the border from Mexico into Guatemala. We were staying in a little town close to a nature reserve and, on New Year’s Day 2001, we went for a walk into the forest. A couple of miles in, we walked into an ambush by a gang of armed and masked bandits.
had smashed my mouth on the ground. I also realised that I couldn’t move my legs, but I didn’t understand why at the time.
The open steppes of Kazakhstan were more wheelchair-friendly terrain than many other destinations Stu has visited
My girlfriend went off to get help, and after what seemed like an age, but what was probably an hour or so, some local villagers arrived, lifted me onto their shoulders and carried me out of the forest. They eventually managed to arrange for a pick-up truck to drive me to a small clinic. And after a painful and interminable day of waiting, I was medevacked to a hospital in Houston, Texas.
In some ways it all feels a little unreal 20 years later, but in other ways it seems like only a moment ago. It was a scary and traumatic experience.
Q: You did your rehab in Texas. What was that like?
A: I was in Texas for seven weeks. My parents came out to visit and my girlfriend stayed with me the whole time and was a great support. I was very lucky in some ways as the bullet severed the spinal cord but with remarkably little damage to the spinal bones. This meant that I could get on with rehab from day one. In the American private healthcare system, rehab is intensive but being able to immediately focus on learning how to live with my new situation was a huge psychological help for me and meant I could get back to work just three months after injury.
Look up which reserves are accessible, on the RSPB or Wildlife Trusts websites, for example. The more popular reserves typically have at least some accessible paths and hides
2Get some mountainbike tyres – these make a huge difference if you go off-road. There are also various front-wheel attachments that can turn a wheelchair into a trike or hand-bike 3
You can bird-watch anywhere – from your garden if you have one, to a nearby park, and even in many cities you can find Peregrine Falcons nesting on the top of tall buildings.
Was there a time you thought it would end your career?
When I was in hospital trying to piece things together, I received a letter from a friend telling me about two other wheelchair users who worked in conservation. It was so encouraging and inspiring to hear that there were people in my situation doing the kinds of things I wanted to do – knowing that something is possible then reframes your own expectations.
Have you improvised any interesting ways to access remote places in your wheelchair?
(laughs) Many! From oxcarts in Cambodia, to dog sledges in Arctic Sweden and dugout canoes in Cameroon. I’ve had to be fairly creative over the years. On one work trip in Mexico, I went to see where some rare parrots were nesting. I was told that access was easy, but when
I arrived, I found we had to ascend an almost sheer cliff-face. So, my guides went to the local village and brought back a mule. It had a solid wooden saddle and virtually nothing to hold on to. I clambered up, sat on my fleece for some padding, and then held on for dear life as we ascended the vertiginous cliff. Every now and then I almost fell off and had to cling onto the poor mule’s neck! There have been many other challenges to overcome but I’ve found that, with help, almost anything is possible.
Q: Many of the best places to watch birds in the UK are notoriously inaccessible. How does being in a wheelchair limit where you can go?
A: Apart from steep slopes, the most common barriers to overcome are fences, stiles and kissing gates. These are such a pain for anyone who can’t stand and climb. Kissing gates are a relatively easy problem to solve – there is a standard accessible design which uses a RADAR key padlock
There have been many challenges to overcome but I’ve found that, with help, almost anything is possible
and many nature reserves are starting to install them. Soft grassy tracks are also a challenge, but the most popular reserves are starting to put in firmer paths, which makes a huge difference. Wooden hides are great for birdwatching as they allow you to get closer to the birds. But poorly designed ones sometimes have a few steps to the entrance, which is frustrating and unnecessary when ramps can be easily fitted instead.
Q: How receptive are nature reserves to making their space more accessible?
A: Generally, they are pretty responsive. The challenge is that these places are often run by conservation charities with very limited budgets. But it is important to make the countryside accessible to as many people as possible. I visited one nature reserve that had recently installed a new five-bar gate and fencing, which made it completely inaccessible.
But I emailed them and got a lovely response, in which they apologised and asked for advice on how they could do things better.
Q: What is your favourite bird that people in the UK could spot this spring?
A: The Swift is an iconic migrant – they are loud and often obvious when they arrive with family parties flying at high speed and giving their distinctive screaming calls. The only time that Swifts ever land is when they are nesting, often under the eaves of buildings; they even sleep and mate while flying. Swifts typically arrive in early May, having flown from Africa. By August they suddenly disappear, and you realise that summer is over because all the Swifts have gone.
Q: Have you got a bird that is top of your wish-list to see?
Yes – the beautiful Cerulean Paradise Flycatcher, a striking blue songbird found only on one tiny Indonesian island called Sangihe. When I started working in conservation, it hadn’t been seen for over 100 years and was feared extinct, but some friends rediscovered the species in the early 1990s. A handful of remaining individuals survive in the steepest and most inaccessible gullies on one mountain, where they are highly threatened by habitat destruction. One day I would love to go there to see them and try to help the conservation of their remaining habitat.
My mum – my best friend, my coffee pal, my brick. She became the dual parent when I lost my dad in 1994. We lost her to cancer in 2015. She taught me how to be kind, funny and supportive. More importantly, how to be strong and when to walk away –traits that I now share with my son, whom she only enjoyed for 16 months.
Mother’s Day for me is about my brilliant, dearly missed mum. And my son; the very reason I can enjoy Mother’s Day again.
Life doesn’t come with a manual, it comes with a mother. Shout out to my mum Fran – although mum lives in Mallorca she’s always there to support me from miles away. Mum and Grandma gave me my love of cooking, showing me what to do in the kitchen from age five. Mum and I still love to cook together but I’m head chef now!
I’d love to give a shout out to Nic Manning, my lovely wife, and mother to our little bundle of joy Jenson. Jenson was born in October last year, six weeks earlier than expected, but he’s been happy and healthy since birth. Both myself and Nic are wheelchair users but I’m a tetraplegic, so most of the jobs are done by Nic. I don’t think she realises how much she does for little Jenson, and for me. She’s a super mum and a legend and we love her very much.
Love from Nathan.
Aged 19, Amelia (now 36) had a quad bike accident, smashing her T12 vertebra, causing incomplete paralysis. Alongside her mother, Amelia founded Coolcrutches.com to help others.
Amelia is also an amazing mum to two young boys and deserves a massive shout out for all she does, with a constant smile on her face!
Love from Andrew, Rufus and Ralph
With the day we all celebrate our mums just around the corner, we’re sharing the love with some special Mother’s Day messages…
To me, being a mum means encouraging my children, Caitlin and Eddie, to follow their hearts and find happiness in life, in whatever form that, may take, and teaching them that although things might not always go to plan, there’s always a silver lining.
Last November my stepdad suffered a SCI and was in hospital for six months. My mum Judith travelled nearly two hours every day to visit him and when he came home, she played a huge part in his recovery. He wouldn’t be where he is now without her love and determination. Unfortunately, my mum suddenly passed away in November. She was amazing and I only hope to be half the woman she was.
Happy Mother’s Day, Mam.
Being a mum to this little chap has taught me what love is. He’s so funny and smart and brave and thoughtful –he’s my very favourite person to spend time with and it’s just such a privilege to be his mum and watch him grow. My love for him also reminds me to love myself – I find self-care is so important as a parent as it gives me the patience and awareness I need to be able to offer him the best version of myself that I can.
Being a mother to Maida (five) and Etta (three) is all about learning, listening, leading, laughing, loving, and living in the moment, as well as a whole lot of patience. They have taught me more about myself than I could’ve ever learnt in a lifetime without them. Thank you, girls!
Being a mum is absolutely the best job in the world. Marcus is such a lovely, inquisitive and happy fellow and a joy to be around. Every day he makes me laugh. His best joke so far has to be: What happens when a mermaid eats too much marmite? They become marmaids!!!
I have been both an able-bodied and disabled mum. Having full use of my body made parenting a lot easier, but I desperately wanted to be the best parent I could after paralysis. This was difficult as there were so many things I couldn’t do now and in my mind I was being a “bad” mum as I just wanted to do what everyone else did. It took time to realise my disability didn’t change the love I have for my children and my kids don’t need what everyone else has got. As long as they are loved, that’s what really counts.
After a long winter keeping warm indoors, it’s nice to know the lighter nights are coming. For me, spring always means a trip to the local community farm to see what delicious treats are sprouting up. It’s an exciting time for food and it’s such a treat to come away with a box full of seasonal goodies!
One of the new year’s resolutions I made in January was to eat more healthily. Easier said than done, being a chef with a sweet tooth! But I have found the ideal dish. It’s easy, it’s healthy, it’s full of flavour, and it’s the perfect comforting crossover into spring: a risotto you don’t have to watch over! Cutting out the faff of constantly adding liquid and stirring on the stovetop, this all-in-theoven risotto recipe is going to be one of my 2023 favourites and, I hope, one of yours!
Rhubarb is always one of the first things to pop up in my garden. Bring on the rhubarb crumble and the rhubarb gin!
Ingredients
• 175g x arborio rice
• 300g x squash, peeled and diced
• 100g x spicy chorizo, diced
• 1 x onion, diced
• 1 x clove garlic, minced
• 1 tbsp x fresh/dried sage (or use your favourite herb)
• 800ml x vegetable stock
• 50g x garden peas
• 50g x strong cheese (such as Parmesan) to finish (optional)
• 1 tbsp x pesto to finish (optional)
• Salt and pepper to taste
Method
• Add all the ingredients except the peas, cheese, salt and pepper and pesto to a large (approx. 25cm deep) oven dish
I BBQ all year round but prefer to cook outdoors in the nicer weather, perch stool at the ready. Spring is the ideal time to dust off your BBQ, give it a good clean and start getting ready for some outdoor cooking.
TOP TIP: Having a gas BBQ is a good standby when you can’t manage a full charcoal cook.
TRY IT: Take half an onion and rub the sliced side along your grill grates – this will stop your food from sticking.
• Stir in the stock
• Oven cook at 180°c for 40-50 mins
• Stir in the peas for the last 5 mins of cooking time
• Remove from the heat and serve immediately
• Season with the salt and pepper to taste
• Finish with a drizzle of pesto and shavings of parmesan
• Serve on its own, with a dressed salad or roasted peppers.
Risotto, BBQ tips, smoothies and soup – you can’t go wrong starting spring with these healthy seasonal ideas
This spring sees the approach of my 50th birthday and with that in mind, I have decided that 2023 is going to be all about taking back control of my health and wellness. I have lost some weight and I have joined a gym, which I will make myself and my neighbour accountable for attending two or three times a week!
Along with this, I am sourcing out new, healthier alternatives to some of my meals. Below are two that I have tested out recently, both delicious and healthy ways to start spring.
Ingredients
• 2 x celery sticks
medium diced
• 1 x small white onion
medium diced
• 1 x small red onion
medium diced
• 2 x cloves of garlic
chopped
• ½ x green/red pepper
medium diced
• 1 x handful of baby
potatoes diced
• 75g x orzo pasta
• 1 x tin chopped tomatoes
• 1 x stock cube
• 1L x boiling water
• Salt and pepper to taste
• 1 x pinch of sage
• 1 x pinch of oregano
• 1 x pinch of basil
• 1 x pinch of rosemary
Method
• Sweat off the celery, onions, garlic and pepper for 5-10 mins
• Bring the water to the boil and add in salt and pepper and the stock cube to melt
• Add the stock water to the sweated vegetables
• Add in the tin of tomatoes
• Add in the chopped potatoes
• Add in the four x herbs
• Check seasoning and add more salt and pepper to taste
• Add in the orzo pasta
• Simmer for 10 mins, stirring regularly (if the soup gets too thick add more water)
• Once the pasta is cooked but firm, serve with a delicious garlic bread.
Ingredients
• 50g x blueberries
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• 1 x small handful of fresh spinach or 1 small block of frozen spinach (frozen will give it a thick shake consistency)
• ½ x a frozen banana
• ¼ tsp x ground turmeric
• 1 x pinch ground pepper (it magnifies the properties of the turmeric)
• 1 x pinch of cinnamon
• 1 x dessert spoon of any nut
• 1 x dessert spoon of sunflower seeds
• ½ pint x either fresh orange juice or plant milk (the fresh orange will boost the vitamin C of the spinach in your system, helping to build your immune system and fight off colds)
Method
• Pour all ingredients into a food processor and mix until smooth
• Serve straight away over ice and try to have before any caffeine in the morning. If you have any remaining mix, freeze into ice cubes and use for tomorrow’s smoothie.
I always freeze fresh fruit and vegetables so I can conveniently grab a handful of the item out of the freezer. I also dehydrate blueberries and other berries to ensure I have plenty during the winter months.
Freezing bananas is an amazing way of saving browning fruit and you can pre-smash them to use in banana bread or muffin recipes!
Paratriathlete and personal trainer Josh Landmann is on a mission to get people working out again – whether that’s at the gym or at home
JOSH LANDMANN joshualandmann@gmail.com
Going to the gym as a newbie can be a daunting and overwhelming experience for many of us, whether you’ve got a disability or not. Some of us embrace it and thrive in that kind of environment, while others are afraid of it, which is totally understandable.
Of course, people might stare and you’re more noticeably aware of it because, well, we stand out. People might stare because they’ve never seen someone in a wheelchair in a gym or because the exercise you’re doing looks weird because you need to make adjustments. They might also be taking a lot of inspiration from your actions!
I broke my neck back in July 2014 whilst on holiday with some friends. I hit my head on the floor of a swimming pool which resulted in a fracture and compression of C6/C7 with a diagnosed paralysis from T8. I’m an incomplete spinal injury, so do have some use of my legs and they can sometimes have a mind of their own. I’m based in the Northwest of England in a little village between Preston and Lancaster.
I qualified as a personal trainer just before the Covid-19 lockdown hit us so I could develop a better understanding of my own training, how the body works and how it might react by using different methods of training.
The fitness industry can be a scary place and often overlooks people with disabilities within it. Some of the big fitness brands do things here and there to assist but I personally don’t think they’re helping
Through the course I found so many flaws within the learning platform and how it covers disability in personal training and was quite shocked at how bad it was. One statement read that if a client approaches you with a disability, you need to refer them to a specialist. Why? If a client approached you in a gym, asking for help to train them, wouldn’t you first and foremost find out what they can or cannot do, what restricts them, what experience have they had in the past and why didn’t that work?
The fitness industry can be a scary place and often overlooks people with disabilities within it. Some of the big fitness brands do things here and there to assist but I personally don’t think they’re helping. There isn’t enough noticeable disability fitness content on social media feeds and that’s something that could easily be changed with the right conversations and messaging.
This is an area I want to help try and change! There are a few really good platforms on social media for accessible training and correct form, and a handful of good personal trainers who know how to really adapt exercises to best help people with spinal injuries and other disabilities to get the best from their training.
I want to help increase this profile and I’ve now set up Josh Landmann Training do just that! I offer 1-2-1 personal and online coaching and group sessions.
I’ve created an accessible training platform for everyone and anyone. I’ve even created my own exercise demonstration videos tailored for each individual client as I found a lot of these videos online just weren’t accessible.
I will be working together with SIA to create more accessible workouts for people to follow online and will also be offering my services to everyone who feels the need for some guidance. I have clients with spinal injuries and am more than happy to travel to see you in person to gain an understanding of what you do and don’t enjoy about exercising and what you can or can’t do. I want to make training and fitness exciting and accessible for everyone!
FURTHER INFORMATION
Please feel free to get in touch with me directly through Instagram @joshlandmanntraining or through my website joshlandmanntraining.mypthub.net/preview/mysite
Self-love coach, nutritionist and yoga teacher, Casey Gemma, shares how her body image changed following SCI and how she has found acceptance of her new physique
In the early stages of spinal cord injury, watching our bodies physically change can be a constant reminder of how our lives have changed. I witnessed the rapid muscle atrophy in my once strong legs. I noticed my belly sticking out, as I had lost the muscles in my abdomen and looked permanently bloated. It was a daily reminder that I could no longer use my legs or core. I felt I had lost all control over my own body, I felt weak. Body composition changes quite quickly after a SCI and we are likely to see an
increase in body fat and a decrease in muscle mass below the level of injury. Although this may seem insignificant in comparison to loss of sensation and function, it can be very difficult to witness our bodies changing out of our control. This was certainly true for me.
I am a T8 complete paraplegic and at the time of my accident, I was the strongest and fittest I had ever been. By the time I was weighed in hospital, a few weeks after my accident, I had lost 10kg. I remember being so shocked looking in the mirror. I thought I looked so weak, and barely recognised myself and my own body.
Acceptance for me began when my physio, Kirsty, entered the room with some small weights and resistance bands, smiling. I began strengthening the areas of my body that I could still control.
Then came a deeper level of acceptance. ‘I am alive’ I told myself.
I’m nearly two years into my injury now, my body looks completely different to how it did pre-injury but 90% of the time I am okay with that.
Turn the page to find my ten steps towards improving your body image
Before my injury I thought of myself as glamorous. I loved my high heels and clothes; they were important to me. In rehab I was only allowed to wear jogging bottoms and trainers, with no bra because of the wires and potential restriction they cause. I spent so long in casual wear, and it just wasn’t me. After I came out of rehab, still not knowing if I could wear anything other than jogging bottoms, I used to hide. I didn’t want anyone to see me. I didn’t go out and I avoided
looking in the mirror. I just didn’t feel like me. My daughter was only six months old at the time of my injury and I wanted her to see her mum as a confident woman. I wanted her to grow up confident. I think that triggered the start of my turning point in terms of how I felt about myself and my body image. I wanted people to see me again and not just my chair.
I started to go out and began a college course. I thought about what I could do to make me feel good about myself. It’s important to know who you are as an individual and to find your own value in yourself.
You can’t change other people’s mindsets, but you can change your own. I gave away all my old clothes when I was told I couldn’t wear them anymore, but I found new ways to look the way I wanted to. I wear beautiful long skirts to cover up my swollen legs, and get clothes made so that they fit me and my shape and look how I want them to.
I am now in my 30th year of injury and I’m still able to maintain good posture and wear nice clothes and my high heels! I found ways to feel like me again and to feel confident in my physical appearance.
1 1 Try not to compare your post-injury body, to your pre-injury body
2 2 Review your social media and mute any accounts or posts that you feel drawn to compare yourself to. Follow more accounts that make you feel good instead, especially other SCI warriors!
3 3 Write down all your positive qualities aside from appearance... and remind yourself of these daily
4 4 Wear clothes that make you feel good. Treat yourself to some new outfits that compliment your post-injury body
5 5 Create a healthy bowel routine and eat plenty of probiotics (good bacteria) to reduce bloating
7 7 On most days, aim to do a physical activity that you enjoy. This will help you to stay healthy and manage your weight
8 8 Try some SCI specific yoga and/ or mindfulness to reconnect to your post-SCI body
9 9 Remember how much your body has been through and write a thank you letter, or a gratitude list, reminding yourself to focus on what your body can still do rather than how it looks
6 6
Eat a healthy diet with plenty of protein and veggies, aiming for three healthy meals a day to preserve muscle mass and stay a healthy weight. Reach out to a nutrition expert if you are struggling
10 10 And on days when all else fails and negative self-talk sets in, replace it with positive self-talk even if you have to ‘fake it until you make it’!
This is my first Forward welcome of 2023, and what an extraordinary and (let’s be frank) tough new year this is turning out to be for so many of you, our members.
Let me begin positively – it is the year SIA will be launching a new and extremely ambitious strategy. At its heart will be goals that aim not just to expand our critical support and advocacy for spinal cord injured people and their families, but to more directly take on the systemic challenges that are hindering a health and care system that works for you. We hope the strategy will lead to a UK government and public that truly understand and champion our cause. The launch is in the planning for later in the year. More soon!
But what about right now?
In our winter issue we spoke of the cost-of-living crisis; I hope many of you have taken advantage of the financial help
that we outlined in the factsheet in that issue. But we know the impact runs much deeper than just costs – even as the days get warmer there remains a perfect storm of a healthcare system failing you, costs still rising, and jobs and travel more precarious. We want to better understand how it is impacting you, across the SCI
thank you to Claire Martin , who stepped in as interim chair for the past 12 months. Her commitment and support to me personally was amazing. Claire remains a board member but handed over the reins to a long-time SIA supporter and board member, Faisal Hussain , who was elected chair for the next three years from February.
community, so please turn to page 50 to see how you can share your cost-of-living story
SIA is the expert, guiding voice for life after spinal cord injury. This is never better represented than by our board members – the majority themselves spinal cord injured – who commit so much of their time and expertise to SIA’s success. In that vein a huge
I am excited to be working with Faisal in this seminal time for the charity. Also, a warm welcome to our three newly elected board members, Samantha Cole, James Wood and Lauren Doherty. You can find out more about them and their lived experiences with spinal cord injury on page 56. Please continue to share your stories, reach out to our support and advocacy teams, and look out for our new strategy being launched soon.
NIK HARTLEY OBE CHIEF EXECUTIVE
We hope the strategy will lead to a UK government and public that truly understand and champion our cause
Did you know that our Academy at SIA offers a range of virtual and face-to-face education and training sessions for personal assistants (PAs) and carers?
These sessions are also available to health and social care professionals and are tailored to each group’s level of learning.
These training courses offer valuable insight into the complex and sometimes unique issues that affect people living with a spinal cord injury.
We provide face-to-face, in-person training sessions for groups or offer virtual courses, which can be accessed remotely.
All training courses are CPD accredited and are delivered by our team of specialist spinal cord injury clinicians.
We look forward to launching two new modules this year and, for those who have completed our full ‘Managing the Neurogenic Bowel Following Spinal Cord Injury’ day, we will be launching refresher sessions.
The two new modules will cover the following important topics:
• Respiratory Management: Covering all aspects of respiratory need specific to people with a spinal cord injury, this module is designed for clinicians who have little or no experience of SCI and looks at the issues surrounding the respiratory system for people with acute and long-term spinal cord injury.
• Therapy: This course has been written by our in-house occupational therapist and covers a wide array of topics including rehabilitation, equipment for personal care/moving and handling and wheelchair provision and upper limb therapy.
Other key topics include:
Under Pressure – The Neurogenic Skin
This is a virtual module looking at best practice in managing neurogenic skin to support the prevention of pressure ulcers.
Managing Spinal Cord Injury
This is a virtual version of our Good Clinical Practice in Spinal Cord Injury training, which is a face-to-face training module. The sessions within this training can be tailored to an individual client or service.
A Fulfilled Life – The Final Chapter
This virtual course has been developed in collaboration with the Princess Alice Hospice, Surrey. This course aims to address the knowledge gap for healthcare professionals when spinal cord injured people who are coming to the end of their lives are sometimes being nursed in hospices or hospitals with limited knowledge or experience in caring for people with a spinal cord injury.
Managing The Neurogenic Bowel
Following Spinal Cord Injury
Participants will examine the theory and practice that underpins effective management of the neurogenic bowel.
“I have been working with spinal injured people since 2012, having induction training and annual update trainings, but you are the first who have shown me properly the impact of injury level on the muscles and limbs. Thank you.”
Jan 2022 – Pressure Ulcer module attendee
“I really appreciate the insight that has been given. I have a better understanding of things my client may be going through.”
Nov 2022 – Bowel module
attendeeAll the above modules are chargeable; please do contact our Academy at academy@spinal.co.uk or visit our website for more information spinal.co.uk/healthcare-professionals/courses/
HERE’S WHAT SOME OF OUR ATTENDEES HAVE HAD TO SAY ABOUT OUR COURSES:
Following the successful pilot of our trusted legal partnerships, we are delighted to announce the start of SIA’s three-year partnership with 14 of the UK’s leading law firms.
The biggest change is that we will be working with two partners in each region – following feedback from the SCI community, SIA staff, and our partners, it became clear that freedom of choice was important.
We carefully selected our partners, looking at a variety of factors including:
• Experience and expertise in meeting the needs of SCI people (many of our partners are recognised by the Legal 500, the PI Awards, Chambers Directory etc)
• Working practices and values that align with SIA’s (sustainability, EDI etc)
• How they will support SIA to achieve our aims, and how they support the wider SCI community.
We’re confident our trusted legal partners are among the most qualified and experienced legal professionals out there. They’ve assisted many SCI people on the road to recovery after injury and they understand the unique nature of the support and advice SCI people need. Whether it be supporting with a potential compensation claim or answering general legal queries relating to life after injury, they have the expertise and experience to help.
In our previous issue we shared the news of the latest organisations to join our thriving Business Membership Scheme, and we’re delighted to announce that since we went to print, we’ve had yet more committed, enthusiastic companies willing to pledge their support for SIA and our work by taking up membership.
We are joined in the scheme by Coloplast, Trethowans, NewLaw, and Elysium Neurological. These companies bring with them a wealth of knowledge and experience, and are incredibly committed to achieving our common goal of a fulfilled life for everyone affected by spinal cord injury.
Every organisation that signs up for SIA Business Membership is an advocate
for our aims. They work alongside us, striving to ensure that every spinal cord injured person can access the support services that they so vitally need.
FIND
For a full list of our business members or for more information on joining our scheme, visit spinal.co.uk/ business-membership/
US Air Force veteran and flat track motorbike racer Austin Herman (pictured below right) raised £600 for SIA after a spree of races last year. Austin, 31, sustained a spinal cord injury after an accident during a race in 2021. After recovery and rehabilitation, the dadof-two, who now lives in Gloucestershire, wanted to give back by raising awareness of SIA during his races. Thank you, Austin!
On Thursday 22 June 2023, SIA will be hosting our ‘Rebuilding Lives Festival’ at the Library of Birmingham. The event is aimed at helping our network of partners, members and corporate supporters to learn more about spinal cord injury and our work. Tickets are £175 (+VAT) and include lunch, a programme of seminars and an evening reception with street food. To book, visit or scan the QR code. spinal.co.uk/get-involved/events/festival/
The Superhero Triathlon is a fun, fully accessible and inclusive event, and is part of the UK’s only disability sport series. With three distances to choose from, you can fly solo or team up with sidekicks for this super challenge.
• When: 12 August
• Where: Dorney Lake, Windsor
• Sign up today –
One of the greatest concerns spinal cord injured people have about going into hospital is how well they’ll be supported in managing their bowels whilst away from home and their normal routines.
Helping people in a medical setting with their toileting needs might seem straightforward nowadays but as SCI people know only too well, that’s far from the case.
Back in 2016, SIA was instrumental in highlighting our members' experiences of poor bowel care in hospital settings to NHS Improvement. Our now ex-chair of trustees, Dr Rupert Earl, and SCI nurse specialist Carol Adcock led the calls for a Patient Safety Alert (PSA) to be issued to all NHS Trusts. After two years of hard campaigning, the PSA was finally issued in July 2018.
We followed up by writing to all Trust CEOs with a draft SIA Bowel Care Policy for them to adapt and use as necessary, and by developing a joint position statement with the Multidisciplinary Association of Spinal Cord Injury Professionals (MASCIP), the British Association of Spinal
It will take time to bring about the changes we want to see, but as the Chinese proverb says, “A journey of a thousand miles begins with a single step.” We will keep you posted on developments over the next few months, but to find out more in the meantime please contact SIA’s campaigns manager, Dave Bracher, at: d.bracher@spinal.co.uk
having a bowel care policy, so that nurses and healthcare professionals can focus on their responsibility to give high quality bowel care to their patients
SCI people knowing how to raise an anonymous complaint to the NHS through the official channels about poor bowel care, or any care with the potential to cause harm, and to use SIA’s draft template letter to report the issue separately to the NHS Trust
SCI people reporting any instances of poor bowel care in a nonspecialist hospital to SIA, so you can support us to bring about change Parliamentarians understanding the vital importance of decent bowel care provision for SCI people, and the terrible consequences if this isn’t provided.
An Emergency Care Plan (ECP) is completed with one of SIA’s SCI nurse specialists and details essential SCI care needs relating to your bowel, bladder, skin, respiration and, where appropriate, autonomic dysreflexia. If you are interested in completing an ECP, more details and a booking form can be found here or you can scan the QR code below spinal.co.uk/ecp-booking/
Sue Evans, 69, sustained a T10 spinal cord injury after a car accident in 1976 when she was 22. Here she shares her experience of bowel care during a stay in hospital
“I broke my leg back in 2019 and spent 12 weeks in hospital where my leg was put into an open brace. I was told if I needed to use the toilet, I had to use a bedpan. That was impossible – you’d have to be a contortionist to do that being SCI and with your leg in a brace!
"I contacted SIA and they arranged for someone to come and train one of the nurses on the ward in bowel care. But when I didn’t receive any help after that I rang SIA again, this time in tears. One of their specialist nurses contacted the ward sister to advise on appropriate care but I was then told that the hospital weren’t allowed to do bowel care.
"I was instructed to get on with my own bowel care even if that meant messing the bed. I couldn’t lift onto a bedpan and so of course I soiled myself many times. I’ve been spinal cord injured for over 40 years and have never felt as humiliated and frustrated as I did then.
"Nobody seemed to want to help me. I remember one morning, messing the bed and waiting to be cleaned up. After about an hour the doctor came
by on his rounds but said he couldn’t assess me until I was cleaned up so I didn’t get to see him that day. It was terrible.
"This was the first time I’d been admitted to a general hospital as, after my injury, I rehabilitated at a spinal unit.
I’m now terrified about going into hospital again. It’s so important that staff are properly trained. Some nurses need to understand that being paralysed doesn’t just mean you can’t walk, it means things like your bladder and bowel don’t work like they used to and you need help with those things.”
From helping highlight the importance of making medical technologies more widely available to a focus on improving community rehabilitation services, our campaigns team have had a busy few months
The most recent meeting of the All-Party Parliamentary Group on SCI (APPG) heard a powerful and impactful presentation from our SCI nurse specialist, Damian Smith (pictured), about the devastating impact of pressure ulcers, the importance of prevention, and how the development of new products like Amicapsil can deliver more timely and cost-effective care.
The focus on pressure ulcers was designed to support
SIA are acutely aware that the cost-of-living crisis has the potential to significantly impact spinal cord injured people. Managing a SCI is difficult at the best of times, but with energy costs so high and as the Autumn Statement continues to affect household incomes, we know many people are very worried about what the future holds.
We are keen to understand how the cost-of-living crisis is impacting our members; if you are happy to share your story please email me at the address above.
the annual international ‘Stop the Pressure’ awareness day, and left the assembled MPs and observers in no doubt that pressure ulcers are an area where the NHS can improve patient care and quality of life while saving significant costs.
NHS England estimated in 2016 that the approximate cost of treating pressure ulcers was £3.8m per day, which means even then, over £1bn each year was being spent on treating a condition which
is essentially preventable. This number can be doubled when litigation costs are factored in, and of course costs will have increased significantly in the intervening years.
SIA will continue to actively campaign for better and wider understanding of how pressure ulcers can be prevented, and for the development and introduction of new and innovative products and ways of treating pressure ulcers if they do occur.
The Medical Technology Group (MTG) is a not-for-profit coalition of patient groups, research charities and medical device manufacturers which is working to make medical technologies available to everyone who needs them.
The MTG believes the uptake of medical technology in the UK is not as good as it should be, and that patients and clinicians need better information about medical technologies so they can make informed choices about their care and ultimately, improve their outcomes and quality of life.
The MTG’s flagship event is Medical Technology Awareness Week, which for 2022 was launched at a reception on the House of Commons Terrace in Westminster. The prestigious event brought together leading political and NHS influencers, and SIA was delighted to attend.
As SIA’s campaigns manager, I was able to provide a patient perspective speech to explain how vital medical technology was in saving my life in the immediate aftermath of my spinal cord injury. Additionally, I outlined ways in which technological developments can support people with long-term health conditions, whilst cautioning that sometimes the best solutions to improve quality of life are not high-tech or high cost but inexpensive and straightforward. Finally, I reinforced the fundamental importance of attitudes to patients and those with long-term conditions, and how crucial it is to listen to each patient as the absolute expert in their condition.
Over 50 charities and professional health bodies, led by the Chartered Society of Physiotherapy, have called for a revamp of how patient data is collected across England. The aim of this is to improve all aspects of rehabilitation services, enabling people to better manage their medical conditions and to ensure they lead more independent lives. The Community Rehabilitation Alliance (CRA), which SIA is a member of, believes that centralising patient data collection is key to tackling health inequalities and will revolutionise under-resourced, over-subscribed, acute, specialised and community rehabilitation services. More details and the full report can be found here: Making Community Rehabilitation Data Count – The Chartered Society of Physiotherapy (csp.org.uk ) or by scanning the QR code.
More information about the Medical Technology Group can be found on their website: mtg.org.uk
Laser therapy uses selected wavelengths of light to stimulate key molecules in human tissues. In a similar way to photosynthesis in plants, light energy from the laser passes through the skin into the cell membrane, triggering photobiostimulation, a process which enhances the body’s natural regenerative functions while stimulating release of endorphins and collagen.
K-Laser is a safe, non-invasive technique that uses the body’s own reparative processes to reduce pain sensation. It targets damaged tissue with specific wavelengths of light, delivering energy from superficial to deep tissues and activating a cascade of photochemical reactions that promote cell function, enabling treated tissues to accelerate the healing process and so, reduce pain sensation.
K-Laser therapy regulates nerve activity, improving functionality in damaged nerve cells, altering nerve pain perception, and reducing local inflammatory processes.
At Physiohealinghands in Aylesbury, lead therapist Sonia Jomon is using a combination of acupuncture and K-Laser Therapy for neuropathic pain and with really positive results.
Peta Barrett has had a T10 complete spinal cord injury since 2016. She says the K-Laser treatments have reduced her pain levels
“I have had severe neuropathic pain in my pelvic region for many years and previous treatments of medication and deep tissue massages did not help. My neuropathic pain
manifests itself with both a hot burning sensation and less occurring sharp stabbing pain.
“K-Laser treatment was suggested to me as a possible solution. Sonia at Physiohealinghands started with K-Laser and acupuncture therapies, however after four treatments this was reduced to laser treatment alone. I was amazed to experience an
Email: info@physiohealinghands.com
Mobile: 07901 932769
Website: physiohealinghands.com
improvement after my first treatment.
“My pain levels reduced considerably, and the subsequent episodes of pain were of shorter duration and less intense. I feel
reassured that the treatment is totally non-invasive. My sessions are around 30 minutes and during this period, all known painful areas of my body are specifically targeted. Initially, I had two sessions per week and the pain relief would last approximately a week, improving my quality of life. After two months of treatment, I was able to reduce the sessions to once a week.
“My aim is to increase the time between treatment sessions to once a fortnight with a view to combining this approach with a reduction in the prescribed medication.
My experience of using K-Laser has been positive and I have no hesitation recommending this treatment option to others who are experiencing neuropathic pain.”
Researchers want to speak to spinal cord injured (SCI) people and their families about the Neuromap project – a study exploring a new way to assess SCI which could determine whether there’s the potential to improve recovery of muscle function after injury.
A collaboration between researchers at Imperial College London and the National Spinal Injuries Centre in Stoke Mandeville Hospital, hopes to discover whether a type of brain stimulation, known as transcranial magnetic stimulation (TMS) can be used to improve post-injury assessment for SCI people –and provide extra information on the health of the spinal cord.
A painless procedure given through a paddle placed on the head, TMS uses strong magnetic fields to activate parts of the brain controlling muscles. Muscle contractions are recorded using electrodes stuck to the skin. If muscle contraction is detected, it suggests there is a connection from the brain to the muscle and means that some spinal cord connections are still intact.
Researcher Rowan Boyles, MSc from Imperial College said: “We think this assessment could give more information than either the scans or
physical assessments doctors and therapists carry out. For example, if someone is not able to move a muscle by themselves, but TMS shows they have connections between the brain and muscle, this might give more information about their potential for recovery, or what kinds of rehabilitation would be most helpful.”
We want to discuss the project with people living with SCI to understand better whether this research is important
He added: “We are not yet recruiting people to take part in this research. At this point, we want to discuss the project with people living with SCI to understand better whether this research is important, whether what we’d be asking people to do as part of the research is reasonable and feasible and, finally, whether SCI people would be comfortable taking part.”
If you would be interested in discussing the project with researchers and/or would like to be part of the project advisory group, please email Rowan Boyles at r.boyles@imperial.ac.uk
Stoke Mandeville Spinal Research (SMSR) based at the worldrenowned National Spinal Injuries Centre, has committed £70,000 towards a study aimed at helping people living with spinal cord injury who are prone to urinary tract infections (UTIs). Thanks to funding from SMSR, researchers from Royal National Orthopaedic Hospital, Stanmore, London, are studying people with spinal cord injury (SCI) administering antibiotic treatment in the comfort of their own homes by instilling a solution via bladder catheters. The aim is to prevent the onset of UTIs. Minimising the effects of UTIs will enable SCI people to continue to work, study, and maintain a good social and family life. Recurrent UTIs can be extremely debilitating, with typical treatment and oral antibiotics posing a real risk of resistance developing. Commenting on the project, lead researcher Dr Sarah Knight said: “Urinary tract infections are a major factor in reducing the quality of life for people living with spinal cord injury. We hope that bladder instillation of the antibiotic gentamicin will prevent recurrent infections without the need for oral antibiotics and their associated side effects.”
To find out more visit lifeafterparalysis.com
In February we welcomed three new SIA trustees to the board, all with lived experience of SCI and the determination to make a difference. Let’s get to know them…
Injury level/type:
T7 complete
Describe yourself in one word: Logical
What do you consider your greatest achievement to be?
Embracing SCI
Do you have a hidden talent?
I’m a pretty competent swimmer, having swum the English Channel some years ago
Injury level/type: C1/C2 incomplete
Describe yourself in one word: Determined
What do you consider your greatest achievement to be?
How do you like spending your leisure time?
Cooking, eating, trekking and motorsport
What does it mean to you to be a SIA trustee?
I am extremely grateful to the SIA membership for supporting my application to become a trustee, and consider it a huge privilege. In my professional life I have worked with people with SCI for many years and this has given me skills I’m confident will add value to SIA. I will endeavour to do what I can to ensure the success of SIA, its membership and affiliations into the future
Injury level/type: T11-L4 incomplete
Describe yourself in one word: Determined
What do you consider your greatest achievement to be? Graduating from medical school with Honours
Do you have a hidden talent?
I think it’s still hiding!
How do you like spending your leisure time?
Singing in a contemporary choir
What does it mean to you to be a SIA trustee?
It’s a privilege to have this opportunity to use both my lived and professional experience of SCI to help improve others’ quality of life. I am passionate about raising awareness of the more ‘hidden’ aspects of living with an SCI and its impact on bladder, bowel and mental health
After my accident I was told I would never again be able to breathe without the aid of a ventilator. I was determined that wasn’t going to be the case so each day I came off the ventilator to see how long I could breathe by myself; it was so scary. It started off being only seconds, but I built up to minutes and then hours. I now use my ventilator for four hours a day, just to give my body a rest
Do you have a hidden talent?
I am able to look past my disability
How do you like spending your leisure time?
With my family and friends, shopping, going to the cinema or concerts and taking my dog for walks
What does it mean to you to be a SIA trustee?
With my lived experience of SCI, I want to make as much of a difference to as many people as possible
GET INTO DISABILITY GOLF!
Golf is a very inclusive sport for disabled people and it is easy to integrate with non-disabled players. It’s also a great way to meet new people as well as getting out into the countryside for some fresh air and exercise. The Handigolf Foundation is a registered charity that rents out specially adapted buggies for wheelchair users to play golf. Membership costs just £220 a year which includes buggy rental and public liability insurance. If you would like to give it a try, we can arrange a free taster session at a driving range in your area. For more information visit www. handigolf.net or find us on Facebook or contact Greg Jackson on 0791 3642066.
PAIR OF WHEELCHAIR WHEELS AND TYRES
With rubberised push rims and steel spokes. The tyres are Primo V-Trak 37-540, size 24 x 3/8 and in an off-road style. (no inner tubes). Located in West Sussex, free, collection only. Edward 07900 690224
TODSWORTHY FARM HOLIDAYS, CORNWALL
Luxury and spacious barn conversions on a family run working farm. Located in an area of outstanding natural beauty in the picturesque Tamar Valley. Owned by a C6/7 tetra, both self-catering cottages are superbly adapted for wheelchair users and their families. Both cottages sleep 6 and have a level access bedroom with a spacious ensuite wet room. Shower chair, hoist and profiling bed can be provided. Both cottages are pet and family friendly. Perfect location for touring Devon and Cornwall. Open all year. Tel 01822 834 744 www.todsworthyfarmholidays.co.uk
TREWORGANS FARM HOLIDAYS
MID CORNWALL
Specially converted detached cottages (sleep 4 & 6) that are fully wheelchair accessible. Mobility aids include 4-section electric profiling beds, air mattresses, ceiling and portable hoists, shower chairs and rise/recline chairs as well as many other items. All bedrooms have en-suite facilities and each accessible bedroom has a level access wet room. Adapted kitchens. Accessible decked patio areas. Ample parking areas. Care available from local agency. Exposed beams, wood burner. Ideal location for exploring the whole county. Tel: 01726 883240 or 07762 173860. For a video tour visit www.treworgans.co.uk.
VEHICLE HIRE, NEW ZEALAND
We have the largest mobility rental fleet in NZ, and 24/7 nationwide roadside assistance. Our personalised service means you get the perfect vehicle for your needs, and we can also offer advice on accessible accommodation and activities. We’ll get you on the road for the trip of a lifetime. Visit www.freedommobility.co.nz
ENGLAND
CLOBER FARM, MILNGAVIE, GLASGOW
Fully accessible self-catering apartment & landscaped garden. Clober Farm is situated 45 mins from Loch Lomond & the Trossachs National Park and only 7 miles from Glasgow. Master bedroom with Liko 200 ceiling tracking hoist, height adjustable profiling bed and Invacare pressure relief mattress. Ensuite wet room. Sleeps 6. Pets welcome. Open all year. For more information and to book: t:0141 427 7686, e: info@sisonline.org, w: www.cloberfarm.co.uk
GLAN Y GORS COTTAGE, SNOWDONIA
Fully accessible, self-catering cottage in beautiful rural location, with open views of Snowdon and surrounding mountains. 4 bedrooms, 3 bathrooms, large kitchen diner, lounge with log fire. Ground floor bedroom and shower room. Hospital bed and mobile hoist available. Sleeps 10 (12 with sofa bed), reduced rates for smaller groups. See website for details: www.wilsons-holidays.co.uk, info@ wilsons-holidays.co.uk, 01286 870 261.
COLLIOURE, SOUTH OF FRANCE
Ground-floor, two-bedroom apartment, sleeps four/six. Level access throughout. Designed specifically for people with a spinal cord injury. Ensuite bathrooms, pressure mattresses, AC, full heating. Quiet but central location. Garden, off-street parking. Within 400m easy push of a lovely town, market, shops and beach. Separate upstairs apartment available for family or friends. www.origincare.com/lorigin-home/ or call Laetitia on 0033 782 06 36 37.
LANGUEDOC, SOUTH OF FRANCE
A spacious, open-plan villa with an accessible swimming pool that’s designed and owned by a T3 para. Lift to first floor master bedroom with balcony and ensuite; hydrospa bath and a ‘loo with a view’. Downstairs; two bedrooms and a sofa bed, so can sleep 8 max; wheel-in wet room; fully accessible kitchen and BBQ area. Large garage and covered terrace, with great views of the High Languedoc National Park. Easy 5-minute push across the river Orb to the boulangeries, bars and restaurants in a lively, family-friendly village. www. frenchliberty.co.uk Contact Chris Dabbs on: 01604 495 435 or 07785 338 497. Email: frenchlibertyuk@gmail.com
Your home from home in the sun including accessible transport and airport transfers. Owned by C4 tetraplegic, 20-minutes from Faro airport with stunning views and privacy. Three twin bedrooms, two with wheel-in showers. Pool with hoist heated to 25ºC. Inclusive accessible vans & airport transfers, electric up and down bed, electric indoor hoist, shower/commode chairs etc. Not to be missed. See full details on our comprehensive website. Tel: 00351 289 414 687, Email sia@ ouricodomar. com Web: www.ouricodomar.com
ALMANCIL, ALGARVE
Outstanding, fully-accessible, luxury, private villa set in beautiful countryside. Three bedrooms, all ensuite with wheelin showers. Private pool with hoist. Comfortable lounge/ dining rooms and well-equipped kitchen. All you could wish for in a holiday home and so much more! To contact us call 01530 833 690 or www.villas-algarve.co.uk
COSTA BLANCA, TORREVIEJA
Established, detached family villa with lovely gardens in sunny Torrevieja on the Spanish Costa Blanca. Huge wheelin swimming pool. Custom built for C5 owner. Close to beach and all amenities. Airport 20-mins. Converted vehicle also available to hire. For details 01262 676 015 www.disabledvilla.com
SIA MERSEYSIDE & NORTHWEST REGION
The popular Merseyside SIA support group meets on the first Wednesday of each month from 2-5pm in the Brain Charity building, Norton Street, Liverpool L3 8LR. The meeting is open to anyone in the North West area, and we usually have a dozen or so attendees. We have
regular guest speakers and social events etc. A free lunch is available from 1pm. Our main meeting is now broadcast simultaneously online, together with an online only catch-up meeting on the third Wednesday of each month. Come and join us for some friendly chat and get involved with some of our numerous ongoing and interesting projects and events. For more details visit www.siamerseyside.org or call Stephen Cronin on 07712 538 197.
AGEING WITH CONFIDENCE
Are you feeling overwhelmed with day-to day challenges of living with a spinal cord injury as you age? I am an ageingwell consultant who provides advice and tailored plans to prepare for and manage ageing with a disability or long term condition. For a free 15-minute consultation, visit www.age-confident. com or call Joy Sinclair on 07786 615 078.
JO-ANNE’S PERSONAL ASSISTANCE SERVICE – COVID-19 EMERGENCY COVER AVAILABLE
Taking bookings for 2023. If you require a personal assistant at this time, please call JPAS on 07500 703 004. Email: jojpas@gmail.com
I am happy to travel to any location within the UK.
Member rates
40p per word, minimum charge of £15 for any one advert.
Non-members
70p per word, minimum charge of £20 for any one advert.
VAT will be added to the cost. Email your advertisement to siaforward@media-shed.co.uk
The closing date for contributions to the SUMMER issue is 19 April.
is advisable to obtain written confirmation that any facilities or special needs that you have can be met by them, ahead of making a booking/agreeing to a purchase. SIA cannot take responsibility for any inaccuracies or omissions and purchases/bookings made are entirely at your own risk. If you have any comments, please email sia@spinal.co.uk
SIA strongly recommends that before committing to an advertised product, service or accommodation in this section, you first confirm all aspects of the advertisement and your required needs directly with the advertiser. It
• Available in 9 sizes, from 18mm-35mm (Ø)
• Shorter length – 75mm
• Stronger adhesive
• Buffer/comfort zone to prevent backflow and sheaths blowing off
• Latex-FREE
9 sizes
• Available in 11 sizes, from 18mm-40mm (Ø)
• Longer length – 130mm
• Large buffer/comfort zone to prevent backflow and sheaths blowing off
• Latex-FREE
• Customise/remove excess length (scissors provided)
• Perfect fit/size for all
11 sizes
• Specifically designed for wheelchair users
• 700ml and 1300ml sizes
• Shaped to the contours of the bended knee
• Traditionally shaped leg bag
• 600ml and 1000ml sizes
• 7cm shorter in length than many 750ml bags – no unsightly taps dangling
• Ideal for sun, sports, and even some short clothing
• 500ml capacity
• Dress as YOU want, not to cover the leg bag
For more information, please contact the helpline on: 01604 595 696 quoting SIAF/MAR23 helpline@manfred-sauer.co.uk
Or visit: www.manfred-sauer.co.uk
