Getting your life back after spinal cord injury – a guide to the support available
When you have suffered a life-altering injury it’s natural to feel that life will never be as good again, particularly if you are dealing with chronic pain and significant restrictions to what you can do. Life after a spinal injury can often require enormous physical and psychological adjustment for you and your family.
So, to help you and your family we have looked at ways in which, through a holistic approach, you can rebuild your life after a spinal injury. Here we have collected a range of resources, the aim being to promote a good working balance between mind and body through all stages of your rehabilitation.
Please click on any of the following links to jump to the section that is relevant to your situation:
- Physical and emotional rehabilitation
- Aids, equipment and home adaptations
- Insurance and welfare benefits
- Your social life
- Care and respite
- Making a compensation claim
Physical and emotional rehabilitation
Treatment in the form of hydrotherapy and neuro-physiotherapy, among other physical therapies, are key to rehabilitation after a spinal injury, and it is important to press your treating doctors for referrals to these and other relevant therapists.
Neuro-physiotherapists will be able to advise on the best way to move around and build strength after an injury. There are often waiting lists to access therapists in the community on the NHS, so it is important to listen carefully to any advice you receive from in-patient neuro-physiotherapists whilst in hospital and put it into practice at home when you are discharged. Also if your financial circumstances allow for the possibility of you paying for treatment, either through health insurance or on a privately funded basis, then it’s a good idea to get it in place as soon as possible as it could make all the difference to your recovery.
Impaired bladder and bowel function
You may require assistance dealing with various issues relating to bladder and bowel function, including:
- Neurogenic bladder, or an inability to control your bladder, perhaps due to being unable to feel when your bladder is full;
- Incomplete voiding, which is where there is a lack of coordination between bladder, urethra/ureter and pelvic floor muscles, resulting in urinary retention;
- Urinary-tract infections (commonly referred to as UTIs), which could require videourodynamics (monitoring of the flow of urine) to identify issues;
- Intermittent self-catheterisation, in order to regularly relieve your bladder;
- Bowel issues such as bloating, incontinence, abdominal pain, faecal incontinence, or in more serious cases faecal impaction and autonomic dysreflexia (a sudden increase in blood pressure).
Your local NHS continence service, staffed by specialist nurses will be able to provide support and medical advice. You may also be eligible for provision of incontinence products on the NHS too so you should contact them either directly or through your GP to book an assessment.
Some further useful information can be found in the Bladder and Bowel community’s website.
Sexuality and relationships
Sexual relationships may not feature at the top of the list of things to worry about following spinal injury but being physically intimate is an important part of who we are.
Once you have got to grips with what your body can or cannot do, especially when the physical and psychological healing is still taking place, it is natural to be aware or concerned about sexual relationships. This affects both men and women, not just in terms of the impact on sexual function and possible infertility, but also the psychological impact this can have generally and also more specifically, in relation to a changing body and self-esteem.
Again, speak to your treating hospital or your GP. A patient leaflet on spinal cord injury (SCI) and sexual health we have found here may provide you with some useful help, reassurance and information to move this aspect of your life forward.
Counselling/mental health support
The psychological effects of a spinal injury should never be underestimated. Your mental health is just as important as your physical health and the two are intrinsically linked.
A spinal injury can, understandably, have a significant impact on your mental wellbeing. It is undoubtedly complex and different for everyone. Common themes we hear about from our clients are that they feel as if they have lost part of their identity since the injury and also that dealing with chronic pain and the physical recovery can wear you out and leave you feeling low.
It has long been accepted that anxiety or depression can exacerbate and distort chronic pain and so dealing with the psychological fall out from your injury is one of the best things you can do for your overall recovery. There are lots of things that can help and many of our clients benefit hugely from professional help, whether it comes in the form of talking therapies or more specialist help such as:
- Cognitive Behavioural Therapy (CBT);
- Eye Movement Desensitisation Reprogramming (EMDR), which can help treat symptoms of PTSD following a serious accident;
- Anti-depressant medication, to help you come to terms with what has happened.
Please do discuss this with your GP. Spinal Injuries Association offer a free telephone counselling service for those who have suffered SCI, and their families. You can find further information on the SIA website.
The NHS also recommends ‘Mindfulness’, which is an approach that helps mental wellbeing by becoming more aware of the present moment, the aim being to help us to enjoy the world around us more and understand ourselves better. Mindfulness is becoming an ever-increasing fixture in people’s day-to-day lives and there are many free resources to help you practise mindfulness in daily life, as well as courses that set aside time for more formal mindfulness practice.
Sport and exercise
Sport and exercise can improve your health, wellbeing and quality of life and there remain plenty of opportunities following a spinal cord injury to get involved, depending on what interests you. A spinal injury does not need to stop you becoming more active and taking up exercise or sport as a hobby.
Exercise also has great psychological benefits like building confidence and self-esteem. Of course, your exercise plans might need to be adapted but there are plenty of accessible gyms and disability sport organisations that can accommodate your needs.
Exercise isn’t just about going to the gym or playing sport though, it can also be about exercising your mind and body in different ways and getting creative. One such example of this is Keith Jansz, an artist with an SCI who paints using his mouth.
Aids, equipment and home adaptations
Some of our clients are resistant to this in the initial stages following SCI, as altering the way they use their homes or just seeing aids and equipment can serve as a reminder of their altered circumstances. However, being open to the things that can help you to retain independence and manage your pain is likely to lead to a more positive rehabilitation.
There is a huge amount of specialist equipment that has been developed specifically with spinal cord injuries in mind. There are the obvious mobility aids such as wheelchairs and frames, shower seats to enable independent washing, as well as mattresses and cushions to help with positioning and to relieve pressure.
Adaptions to your home , which can often be undertaken in a sympathetic way, are likely to enable you to achieve greater independence in day to day living. Perhaps you have a room that could be converted into a downstairs bedroom, or a downstairs bathroom with space for a level-access shower or wetroom. Putting these things in place may be the difference between future independence and a further disabling fall.
Ideally you will be able to obtain a referral to an occupational therapist to advise on these adaptations, in conjunction with advice from a physiotherapist about the aids most appropriate to your injury. There are lots of ways to self-help as well, and there is the possibility of hiring or purchasing equipment if your financial circumstances allow for this. Funding may also available to you through your local authority to help you pay for adaptations to your home, subject to assessment.
We would encourage you to contact your local authority direct to arrange a needs assessment to see if you are eligible for council funded services or entitled to a Disabled Facilities Grant.
Your work is likely to be a large and important part of your life. SCI will very likely lead to a substantial period of time off work, creating added and unwanted financial pressure on you and your family.
Accessing financial support if out of work
If you are an employee, you will be entitled to Statutory Sick Pay (SSP), or in some cases a period of enhanced sick pay from your employer. SSP is payable for 28 weeks and if you still cannot work after 28 weeks you will be able to apply for Universal Credit or Employment and Support Allowance. Please find further information on Universal Credit or Employment Support Allowance here.
Returning to work and your rights
Returning to work after a life-changing injury can be an intimidating prospect, full of new physical and emotional challenges. If you are able to return to your job, you are likely to be classified as ‘disabled’ under The Equality Act 2010, meaning there are certain responsibilities that your employer will have in terms of supporting your return to work.
Most importantly, your employer has a duty to make reasonable adjustments to allow you to continue to perform your role and to ensure you are not disadvantaged as a result of your injury. Examples of this might include:
- providing you with a phased return to work;
- ensuring you have an appropriate chair at your desk;
- making the workplace wheelchair accessible;
- adjusting your working hours or allowing you to work at home where your role allows for remote working.
Other practical measures might be as straightforward as providing suitable nearby parking.
Where to find guidance on your rights
It is important that you know your statutory rights in the workplace and free information and advice can be sought from Advisory, Conciliation and Arbitration Service (ACAS), a government funded organisation, from Citizens Advice, or from your trade union representative.
You cannot be made redundant, be dismissed, or be forced into retirement just because you’ve become disabled from a spinal injury. If your employer is not living up to its statutory duty to support you, you can contact our Employment team, who may be able to assist. Our Employment team has also prepared a disability discrimination guide, which contains a lot of useful information.
Learning new skills
For some, a return to their previous job is not possible. The prospect of securing future employment can be overwhelming, but many spinal cord injury and other charities can provide you with vocational support to guide you through this.
The charity “Back Up” has some helpful courses on returning to work after a spinal cord injury, which you can find out more about here.
Insurance and welfare benefits
Frequently, those recovering from SCI will need to take significant time away from work and are sometimes not able to return to work at all. This can result in significant money worries, which in turn can make it much harder to take control of your rehabilitation.
Critical illness cover/life insurance
Some people may have taken out critical illness cover or life insurance at some point in their lives and have simply forgotten about it. Now is the time to dig out the policy and make a claim. Some workplaces also have their own equivalent schemes that should also be investigated.
Many policies offer a lump sum when a certain illness or injury has occurred and SCI is likely to be one where the policy will pay out. This can provide vital resources to not only allow you to pay for private rehabilitation therapies, where needed, but also to sustain you and/or your family until the financial situation can be resolved for the long term.
You and those who are caring for you are likely to be entitled to financial benefits from the government. These would potentially include Personal Independence Payments (PIP), which is not means tested; Universal Credit; and Carer’s Allowance. It is a good idea to get advice before submitting any claim. Please visit the Citizen’s Advice Bureau’s site here for further information.
Vehicles and transport
The government has various schemes you may benefit from, to include: blue badge parking, exemption from paying vehicle tax, a free bus pass or rail card or access to a lease vehicle through the Motability Scheme.
Your social life
It is easy for your world to shrink following SCI. Pain and mobility issues may confine you to your home, particularly in the early days. The importance of maintaining a social life should not be underestimated though, as building and maintaining meaningful relationships are key for anyone’s quality of life.
In these days of the internet, smartphones and video calls, maintaining a connection with friends and family digitally is easier than ever before. Being able to keep your social-life alive through digital tools means that when you are able to go out and socialise you won’t feel like you’ve been left behind. Having visitors and making your home a social space can also really help with feelings of isolation.
As with all aspects of adjusting to life after SCI, you will face obstacles and understandably feel nervous when venturing out, even to places well known to you before the injury. Be up front with friends and family about your experience and your capabilities and establish new boundaries. For instance if you are not able to tolerate busy environments or lots of noise from a pain management perspective, make sure you tell people; they can then help you to avoid these situations or at least understand why you may need to leave.
There are many internet forums where you can reach out to other spinal cord injured people and find positive examples of people living a full and happy life. Many of our clients find that discussion with others who they can share and compare experiences with is liberating and builds a new community of friends.
The following charities provide useful resources and support groups. These are also helpful for the families of those who have been injured who also need a voice and a helping hand:
- Cauda Equina Syndrome Association – ihavecaudaequina.com
- Spinal Injuries Association – spinal.co.uk
- Back Up – backuptrust.org.uk
- Brain and Spine Foundation – www.brainandspine.org.uk
Care and respite
Getting the right care in place is paramount to rebuilding your life after SCI and everyone’s care-needs will be different. Even if you have an incredibly supportive partner or family member you may need to put in place some outside help, if only to provide your family carer with respite. After all, it is important to retain family relationships and avoid – as far as possible – these simply revolving around the care they provide.
You may be entitled to financial support for care from your local authority, although depending on your means you will generally be expected to pay towards the cost if you have a long term requirement for care.
The impact of SCI will undoubtedly be felt amongst those closest to you and those who help care for you. It is sometimes easy to forget the emotional and psychological challenges when coming to terms with a loved one having experienced a life-changing injury. So it is very important that a support network is in place for those closest to you. GPs are a good starting point for those impacted by your spinal injury.
Making a compensation claim for spinal cord injury
The causes of SCI are wide-ranging and how you sustained your injury will be unique to you. It may have been caused by a direct trauma, such as a road traffic accident or an accident at work; it may have been an awful but natural consequence of an illness or medical condition; or it may have been sustained through medical negligence.
When you are initially told you have a life-altering injury, quite rightly all energy goes into getting the best possible physical and psychological outcome. When matters have settled down and the impact of the injury really starts to be felt, you may want to look at exactly what happened and why. Sometimes there is a very simple explanation and it is tragic but understandable and unavoidable. Unfortunately, there are other occasions where an injury was sadly preventable or avoidable.
If you are concerned about whether you, or someone close to you, sustained their SCI as a result of an avoidable accident, or due to potential delay or mismanagement of their medical treatment, then we have the expertise to help. We can advise you whether someone was wholly (or partly) to blame and help you seek financial compensation for your injuries. As dedicated spinal cord injury solicitors, we are able to offer straightforward advice about securing compensation which will help with your immediate and long term needs.