Back Up’s report into living with a spinal cord injury long term
- Summary of findings
- Summary of recommendations for Back Up
- Resilience factors
- Problems and worries
1. Aim of our report:
- To develop our understanding about the impact of living with a spinal cord injury long term.
- To identify particular needs of people living long term with a spinal cord injury.
- To identify opportunities for Back Up to adapt and develop our services to meet those needs.
2. Summary of findings:
- Some people believe that Back Up is not relevant for people living long term with a spinal cord injury. They may have used (or heard of) our services when they were newly injured, but they feel that the services we offer (activity courses, mentoring) are no longer applicable to them.
- Factors associated with resilience and a positive outlook on life: these include being busy and involved with other people, valuing support from friends, family and health professionals. Active involvement in the spinal cord injured community is associated with a good quality of life; ‘being there’ for newly injured people adds value to life with spinal cord injury. People with a positive outlook show a pragmatic acceptance of the reality of spinal cord injury. They identify, but are not overwhelmed by, concerns about the future – the likelihood of further compromises and increasing needs…. ‘I knew it would get harder as I got older.’
- In contrast, other interviewees have a gloomier outlook. They suffer from pain and/or physical ailments, they continue to express frustration about their spinal cord injury related limitations, and they are pessimistic about the future. In the worst cases, they seem preoccupied with severe pain and frustration, struggling to find the motivation to carry on. Their strategies include withdrawal and even self-blame.
- One interviewee gave a markedly ambivalent picture; living an outwardly active life, but recognising that the strategy of denial and avoidance of confiding relationships could lead to isolation and a risk of depression.
- An important take-home message from this small study of people living long term with a spinal cord injury is that active involvement with the spinal cord injured community seems to be associated with a positive, resilient outlook, and a good quality of life.
3. Summary of recommendations for Back Up:
- Communication is key – the word ageing could alienate people from the discussion. We need to use language such as living well with spinal cord injury to engage everyone affected by spinal cord injury to consider how they live now, and how they can live well in the future. We should aim to identify and address anxieties and worries.
- Focus on communications emphasising people’s experiences of living well with a spinal cord injury: people in their 20s/30s/40s to engage as many people as possible who have been living long term with a spinal cord injury, showing that our services are applicable to them.
- How many Back Up volunteers and staff who have been living long term with a spinal cord injury are comfortable talking about it? We need to address the issue with our volunteer and staff team, who may need more training/space to talk about long term issues, before supporting others?
- Provide more training for staff and volunteers on pain management.
- Revisit the language we use in our volunteer training, e.g. encouraging mentors in training to ‘think back to when you were first injured’ – to encompass living long term with spinal cord injury and engaging with those experiences and emotions.
- Do a session on each course about ‘living well’, looking sensitively at ‘resilience’ factors as well as at problems and worries identified.
- Expand the study to at least 30, as we cannot rely on findings from the existing small sample of 11 interviews (for example, the proportions of ‘resilient’ vs ‘gloomy’ interviewees might be different in a larger, unbiased sample). The findings should be regarded as interesting provisional results from a pilot study.
- If the association between active involvement with the spinal cord injured community and resilience is replicated in a larger sample, Back Up should promote outreach to vulnerable spinal cord injured people who may benefit.
- Promote wider research that shows that while health and function can decline with age, life satisfaction and quality of life can remain stable (Issues of ageing with spinal cord injury, 1993 and British Ageing with SCI Study: changes in physical and psycho-social outcomes over time 2010)
11 pilot interviews were conducted over the telephone during 2017 by our Mentoring Coordinator, Andrew Dickinson, who selected potential interviewees from the Back Up database and contacted them to explain the project and seek their consent. Selection of interviewees was semi-randomised: all interviewees were registered with Back Up and had lived with a spinal cord injury for more than 20 years. Their involvement with the charity varied. A stratified sample was drawn from all those registered with Back Up, with a deliberate mix of ages, level of injury, and gender.
All interviewees were asked a series of questions, as follows, in a semi-structured interview format:
- Tell me what you’re doing with your life at the moment?
- What were your expectations of ageing with a spinal cord injury?
- How do they compare with your actual experiences?
- What has changed since your injury?
- What did you struggle with, what were the challenges?
- Was there anything missing in terms of support offered?
- Questions around current leisure activities, relationships, social life, employment, physical and emotional wellbeing.
- How do you feel about your injury now, compared to how you felt when you were first injured?
- How do you feel about the future?
- What are you concerned about, if anything?
- What do you know about Back Up and how we can help people in your situation?
- How have you been involved with us so far?
The interviews were recorded (audio), and transcribed. The 11 interview transcripts were read and analysed by two independent readers, Beth Scrimshaw and Susanna Graham-Jones, to produce the following brief summary of findings, and to enable staff and trustees to digest the implications for Back Up as a service provider.
||Age at injury
||Years since injury
||C5 incomplete (can weight bear)
||Overseas & Stoke Mandeville
||Walks with aids
||Sheffield (eight years post injury)
A detailed analysis of the 11 respondents’ answers to the questions listed above yielded the following 12 themes, or domains: family life; social life and relationships; emotional wellbeing; activities – sports, employment, volunteering; health care; personal care; perceptions of change in society since the spinal cord injury occurred; the perceived and potential role of Back Up as a charity in the sector, for those living long term with a spinal cord injury; with a particular focus on the ups and downs of life with a spinal cord injury over 20+ years.
The most striking finding overall, in this small sample, was the contrast between a generally positive outlook on life with a spinal cord injury (five of 11 interviewees), compared with the more gloomy and anxious outlook of another five interviewees. Further analysis of interview transcripts was therefore undertaken, with the aim of identifying factors relevant to these contrasting perceptions of people living long term with a spinal cord injury. One interviewee gave a markedly ambivalent picture; living an outwardly active life, but recognising that the strategy of denial and avoidance of confiding relationships could lead to isolation and a risk of depression. ‘Frequently mentioned factors’ are noted in six to nine interviews, i.e. in more than half the sample. Let us be clear that it is not the case that ‘resilient’ people do not mention problems, nor that ‘gloomy’ people have nothing positive to say. The impression of a contrast (resilient vs gloomier interviewees) resulted from the general impression of the levels of energy and quality of life evident in each transcript.
6. Resilience factors (15 identified)
Factors which seem to be associated with positive resilience in living long term with a spinal cord injury:
Five interviewees came across as resilient: they are busy, energetic people. Their interviews reveal stories of how they had picked themselves up after the initial shock of spinal cord injury, determined to ‘get a life’. Some could be described as ‘expert patients’. Some are very positive about the benefits of involvement with the spinal cord injured community, and are engaged in supporting those more recently injured. Others have gained self-esteem from living and working independently, out with the spinal cord injured community. Active involvement in the spinal cord injured community seems to be associated with a positive and resilient outlook on current and future life with a spinal cord injury.
Table one below lists the resilience factors identified as particularly prominent in these interviews, starting with the most frequently featured ones, alongside illustrative short paraphrased extracts (taken from all 11 interviews).
|MANAGING COMPROMISES / TRADE-OFFS – being realistic, getting a sense of perspective
|Mentioned in eight interviews
- As time goes by, everyday things just do take longer. It helps to accept this. Your priorities change
- I am a realist about what changes in society are likely.
- When I was first injured, life had basically stopped. Today, I wonder whether spinal cord injury actually forces you to make more of your life, you get used to putting those negative feelings aside.
- For a time, I was living week to week, but now it’s stabilised. This is the new reality, transition to a power chair and hoist, but I am more ahead of the game now. I’m an optimist.
- My spinal cord injury wasn’t an accident, so I haven’t had to deal with self-blame. I don’t get caught up thinking what could have been.
- If you are feeling low, then you’ll be more frustrated about the things you can’t do…when you’re fine, it doesn’t bother you – I don’t have a problem with double incontinence and not being able to walk!
- Nowadays it’s not the wheelchair that’s the problem, it’s the pain, or the bowels…
- My injury is a nuisance, but it could have been a whole lot worse.
- I think you should be mindful of what the future might hold, but not forget to live in the present.
|GOOD FAMILY LIFE
- My husband was more realistic than me about what was changing, and helped me adjust.
- My partner and I are always looking for the next challenge – that’s who we are.
- My husband is more concerned about safety now – it’s all about setting up checks and balances
- I had my kids very young – we both had to work and manage the kids, so things have always been family-oriented.
- I’m an older parent. For a son and a dad, we’ve done all that we’ve wanted to do together.
|VALUING THE SPINAL CORD INJURED COMMUNITY – solidarity
- Volunteering and being part of the spinal cord injured community is one of life’s great pleasures
- There are pros and cons to being ‘the one in the wheelchair’
- Meeting other people in wheelchairs is enjoyable – just being with them, comparing notes. You can miss out on this and never interact with people in your situation.
- It’s important to give feedback to the spinal units – I feel passionate about being involved in the unit that I was in.
- We go into the unit quite often, and when the guys are down, we pick them back up again. This guy, he was thinking his life was over, and we managed to give him some new insight. That’s great to see.
- Now I could get advice from a tetraplegic friend about using a power chair in future – that’s peer support.
- Back Up is a way of opening the door on more exciting activities, that has been the core, for me.
- Back Up needs to reach people about a year after discharge.
- In hospital, patients are totally focused on getting home. A year later, they may feel restless, trapped: Back Up can offer ways of extending themselves, reaching their potential. Back Up generates a great ‘can do’ attitude.
- Older people may be overlooked on social media
- Back Up could host a get together in a warm place in winter? – some people find the effort of getting dressed up for the Ball too much for them.
- Back Up does run Over 50s courses. These are mainly aimed at the newly-injured though. A Back Up course for the long term injured would be good, I’d like to go and work on my skills
|STAYING INDEPENDENT for as long as possible
- I dread the moment when I will need a power chair… but I could get a car or van which can take a power chair, so I could still drive.
- As time has gone on I have moved from ‘making it work’ to ‘making it comfortable’.
- I’ve been living independently for 30 years, but now I am starting to struggle.
- Thinking about ageing is a new thing, it’s been a feature of the last few years.
- Exhibitions: that’s where you learn about new stuff.
|CONTINUING TO ENJOY TRAVELLING, HOLIDAYS
- Issues with cars, buses, trains, flights tend to increase as you get older, though some things have improved.
- You need to know where to turn to for advice about travel, how you can address problems.
- With experience, you get good at picking up clues, e.g. about access to unfamiliar buildings.
- We look forward to going on cruises
- Nowadays, yes, I will take a buggy through the airport. They are there to be used, and it’s easier.
|VOLUNTEERING / HELPING other spinal cord injured people, and those with other disabilities – it’s a specialism
- Being involved with the new guys on the ward, helping them turn their lives around – emphasising living as best one can.
- People have to be told about etiquette – how they should avoid bending down to talk to a wheelchair user in a pub this makes us feel belittled.
- As a volunteer, I get loads out of the experience. It’s also about the social network.
- I have really enjoyed being a mentor, it’s different from traditional peer support. It’s one to one, finding solutions with people, not imposing your own ideas.
- We have a place in my town for people with all types of disabilities, not just spinal cord injury. That’s my voluntary work.
|CLOSE FRIENDSHIPS – someone to confide in
- I am more open about seeking and accepting help now.
- I suppose all the new relationships I have made are with people who are supportive.
- I ended up being left behind by my friends, who were going out to clubs, so I built new friendships – changed circles.
- I feel lucky in terms of relationships – I have lots of friends and I meet new people in the park, walking my dog.
|PAID EMPLOYMENT – satisfying working life, full or part-time
- I went to uni two years after my injury, that was the making of me.
- Decisions about work and when to retire – a very personal trade-off between increasingly effortful lifestyle, and fear of lack of stimulation if no longer going out to work.
- We decided both of us should work because of the uncertain future with my injury. I now do part-time work.
- Shifting to part-time work may be a good compromise when full time work is too much because of pain, sedative side effects of medication, or lack of energy. It’s a good idea to do things in stages.
|CARE & HOUSING NEEDS BEING MET
- I was trapped in a nursing home for over a year…When I got my own house, it was a massive turnaround.
- Getting the right housing is vital for maintaining independence
- I have moved to a bungalow – smaller, cheaper to run, easier.
|ASSISTIVE TECHNOLOGY – look for funding for specific needs
- Smart Drive is a godsend – I can get exercise without putting too much pressure on my joints.
- I am planning to get a power attachment to my chair – it will make life easier.
- A ceiling track hoist will help, as transfers are more difficult now.
- It’s helpful to have a personal contact to get information on all the innovations out there in assistive technology.
- Assistive technology developing all the time – new kit, new care agencies. Older people aren’t always early adopters, so they need more encouragement to try new stuff out.
- Back Up could support people looking for funding, they could help older people with a spinal cord injury find new kit
- I wanted to carry on being with horses despite being unable to ride; I discovered carriage-driving.
- We found a local disabled sailing association, after sailing with the Jubilee Sailing Trust.
- My life was consumed by wheelchair tennis and sledge hockey. This wasn’t just leisure activities; it was my life.
- I learned how to scuba dive soon after my injury
- Back Up has helped me get into physical things- really important – it has made me feel less disabled.
|HOLDING MY OWN, OUT WITH THE SPINAL CORD INJURED COMMUNITY
- I don’t personally have a need to hang out with other spinal cord injured people – socially I don’t need to, I have other friends.
- At a social event, people around me don’t know that if they step back they might knock me over. But it’s up to me to make them aware.
- ‘Shutting out the injury’ has been my coping mechanism. I don’t have any friends who have spinal injuries. I’ve been the only person in a wheelchair where I have worked.
|ADEQUATE HEALTH CARE – continuity is helpful
- Consistent follow up in the NHS is really important – an annual review appointment; having a case manager at the Spinal Injury Centre; being known by your own named GP, Practice Nurse, and District Nurses.
- Follow up for spinal cord injury is mostly better organised, nowadays, for newly injured people. But we long term injured people have had to be proactive to make sure we get continuity of care. It’s not the norm everywhere.
- When I was diagnosed with depression it was a really black period. But talked to a GP and he said medication was not the way to go. It was a ‘lightbulb’ moment – I’ve never been that low again.
- My local GP practice is good – the doctors are happy to come out and see me if I can’t get there
- Attitudes have improved vastly over time. Doctors, and my parents, were ignorant and prejudiced back then.
- I check hard for marks on my skin so I have never been bed-ridden with pressure sores. Been lucky there! Otherwise I have a check-up every year – apart from one episode, I have had no medical problems.
|HAVING ENOUGH MONEY HELPS – for assistive technology, travel, etc.
- It helps to be able to throw money at a problem.
- When you’ve worked for years, you may then have money to use to solve problems when you are older.
- I invested my compensation pay-out, so I don’t need to look for work.
- The finances – that’s the biggest factor, if one wants a decent quality of life.
7. Problems and worries (16 identified)
Factors associated with a gloomy outlook in people who express anxiety and a degree of pessimism, or ambivalence
Interviews with these six people reveal unease and apprehension – ‘being in the wheelchair, I have never felt comfortable with myself.’
The factors identified below are associated with a sense of health and access problems lying in wait as the future unfolds, and were particularly evident in interviews with those who expressed a predominantly gloomy or anxious outlook. ‘I am scared about the future; things are just going to get harder.’ These ‘problem factors’ are listed in Table two below, starting with the most frequently mentioned ones. Illustrative material taken from all the interview transcripts (direct quotes and paraphrased material) is presented in the right-hand column.
|PAIN, PAINKILLERS, & SIDE EFFECTS – especially shoulder pain from years of wheelchair use
|Mentioned in nine interviews
- Severe pain can inhibit us from reaching out to others, from having any aspirations to a good life.
- I had bad neuropathic pain for 4 years, then I had many years when I was fully independent. Then bad pain again, because of the wrong cushion.
- A life of wheelchair sports may land you in trouble – a lot of older people suffer with shoulder pain.
- I’ve got more pain now – in my wrists, hands, thumbs. I think it’s arthritis, but I haven’t seen a doctor.
- I’m coming up to the point of shoulder surgery now, unfortunately.
- The only thing that works is cannabis. But the GP said I couldn’t have it. I have root pain. It just goes on.
- I have chronic pain, I hate waking up.
- I sleep a lot with the drugs, so I don’t do much.
- I’m on so many meds that I can’t concentrate.
- Over time, the medication seems less powerful and you take more.
- At one time I was drinking a lot of whisky at night, as a painkiller.
|POOR HEALTH CARE – the overstretched NHS, uniformed healthcare professionals, lack of continuity, lack of follow up and life-long care.
- There should be more counselling support.
- I haven’t had an annual check. I know I won’t be treated properly if I don’t make the phone calls.
- Care of spinal cord injured people in DGHs is appalling. There are nurses who won’t do manual bowel evacuations.
- With no physio, I can’t get out of my room without help.
- Lack of physio means I have lost some of my range of movement
- I asked the doctor what would happen when I got older, and he couldn’t tell me.
- I didn’t have any follow up for about 13 years after my accident. I fell through the net a bit.
- The quality of the NHS isn’t as good as it was when I had my accident.
- There doesn’t seem to be much offered at spinal centres for long-term spinal cord injured people.
- I would like to see readmission beds at spinal units so that you can get proper care.
- Back Up could lobby for annual review clinics for long term injured people, or over 50s, or both.
|ANTICIPATING WORSE QUALITY OF LIFE , LOSS OF INDEPENDENCE, and INCREASING CARE NEEDS
- I might need care if things get harder. That would be a big step.
- I wonder if paras, having been totally independent, could benefit from further support when they face not being able to do everything for themselves. How would people find that support?
- That’s my main worry, being out of action and unable to push
- I don’t want my carer to take me out, I want my independence.
- My concern is that nothing might come of all the work I have done in the gym. The sense that I have got to get out of this chair drives me. I’m still very angry.
- I am concerned about the NHS – my GPs and district nurses – my stalwarts – have all retired. I can’t trust that what’s here today will be there tomorrow.
- I find myself thinking about life and what you’ve missed out on.
- It’s going to be harder in a wheelchair as you get older. I just take one day at a time; I am waiting to die.
- I’m just physically not as fit as I used to be
- I have never accepted my spinal cord injury.
|ACCESS & TRANSPORT PROBLEMS – cost of taxis, lack of accessible lifts and toilets
- Just going out to the shops is enough of a challenge without thinking about holidays
- I do all my shopping online and I stay in, so I don’t have the chance to meet people.
- Taxis aren’t always there, and they are expensive.
- Trains improved a while ago, but it still depends on each individual station.
- I would have liked to travel more – I might have been more confident if I had done more earlier on.
|ANTICIPATED or ACTUAL LOSS OF IMPORTANT PEOPLE (especially mothers)
- I’ve backed off from relationships and dating. It’s just too hard.
- My mother saved me a lot of grief with local health services, she was a nurse.
- When my mum goes…I am really worried about that. She’s the main person I rely on.
- It’s harder to stay in touch with friends as our lives diverge; they have children, and their priorities change.
- I haven’t got a social life really. Even less as I get older. I can’t be bothered, you know?
- I’ve always been prone to depression – it’s worse when you’re on your own.
- I’m just getting to that age when people start to pass on or get ill.
|DECREASING MOBILITY – possible need for a powered chair after living well with a manual chair for years
- Transfers are harder work now, so the height of toilets, furniture and car seats matter more than before. We can be discouraged from going out, as a result.
- Nowadays, if I fell out of my chair I couldn’t get back in.
- I can see that a hoist would make sense, now.
- I dread the moment when I will need a power chair. But I suppose I could get a car or van which can take a power chair, so I could still drive. Assessment for a power chair will take 18 months.
- Having a power chair doesn’t feel right for a fully independent para.
- Deteriorating ability to stay upright and walk – I’m more prone now to falls and injuries.
- I am stuck in my bedroom; I can only get downstairs with assistance.
|LOSS OF ENERGY & MOTIVATION, LOW MOOD, DEPRESSION
- There is the danger of isolation and lack of stimulation: a vicious cycle, worse as you get older.
- When I had my accident, I couldn’t think about the future, I had lost my career.
- I mostly feel the same about things as I did when I was first injured.
- There isn’t anyone around to discuss things. Sometimes I don’t manage to motivate myself.
- I am scared about the future, things are just going to get harder.
- I feel like I have buried myself here. I haven’t been out socially – for years.
- All that active stuff I did before my accident, I don’t want to think about it
- There’s no way I could work after what’s happened to me.
- I get sick of talking about how my life is. I just take it one day at a time.
|PUTTING ON ‘A BRAVE FACE’ – but needing more support.
- It’s worth making sure that relatives and friends realise that things are getting harder, as you get older. They may assume that you can carry on just as you used to – they may take your ‘brilliant coping’ for granted.
- Things are changing for me, but maybe my family haven’t caught up yet.
- I try to keep strong, putting on a brave face. I tell myself: ‘this is what you’ve got to do.’
- When I’m with people I am happy and cheery, but inside I am different.
- I didn’t talk about things and my partner didn’t know what was going on. You need to keep connecting.
- They think I am strong, that’s the face you show to the world. But that’s not how I see it.
- I hide a lot of things; I don’t let people know when I’m struggling.
|ANTICIPATING NEED TO MOVE TO A NEW HOUSE
- I should really move, and be able to wheel to the shops – but I don’t really want to think that far ahead.
- We don’t know if our house will be suitable when we are old and decrepit – but we do think about how we would cope with a catastrophic change to my health.
|SKIN FRAGILITY GETTING WORSE OVER TIME
- You expect more problems with skin as you get older – this is common.
- I had a pressure sore – that meant three weeks in bed. After that, I cut my hours at work.
- I’ve had foot ulcers as I have gained weight.
- Nowadays I need more bed rest, to prevent pressure ulcers.
- I’ve had cellulitis a few times
- I’ve had really bad eczema in the last 2 years, so I need to be a lot more careful now.
|BLADDER, KIDNEY AND BOWEL PROBLEMS – inaccessible toilets
- I was in hospital recently with a severe kidney infection
- One newish difficulty is transferring off a loo that’s too low – so I will look at alternatives to self-catheterisation.
|CHEST PROBLEMS, SLEEP APNOEA, AUTONOMIC DYSREFLEXIA, SPASMS
- I have had issues as I’ve got older – I was diagnosed with sleep apnoea. It crept up on me – I was falling asleep all over the place.
- I’m much more wary of the weather now. If I get damp, a cold will turn into a full-blown chest infection. I have been into hospital more than once with that – it’s one of the problems for a high level tetra.
- My spasms have got more awkward than they used to be. You understand your body that much more now. It’s usually something to do with bladder or bowels.
|SUFFERING IN COLD WEATHER – reluctance to go out, risk of isolation.
- Cold weather brings the temptation to hibernate, to stay in to avoid getting too cold. It takes so long to get dressed up. It’s more of an effort than before.
- When the weather is bad, I consciously decide not to go out.
|WEIGHT GAIN – transfers getting more effortful, limiting activities.
- I used to go clubbing – but I can’t be lifted upstairs in my wheelchair nowadays
- Putting on weight has had an impact on shoulders and transfers.
- I knew the heavier I got, the harder it would be. But as I’ve got older, it’s harder to control my weight.
- I started off by going to the Job Centre, and found them useless
- There are issues around care and what’s going to happen with the NHS.
- It’s so frustrating when your carers are so slow to learn stuff.
- It used to be that if you had a disability you’d be looked after. But now you can’t put your trust in that.
Many thanks to Dr Susanna Graham-Jones for compiling the report