Life after spinal cord injury – It’s ok to not be ok

According to the World Health Organisation, 20-30% of people with spinal cord injuries show significant signs of depression. Recent research from the Spinal Injuries Association has highlighted the severe lack of mental health support, for those who have sustained a Spinal Cord Injury (SCI) in their report ‘It’s not just physical’.

The report has revealed that only 1 in 3 people living with a spinal injury have access to mental health support, and out of those, a staggering 68% do not feel that these support services are meeting their needs. These unsettling statistics highlight the reality that coming to terms with an SCI is a challenging and gradual process. In the Spinal Injury team here at Bolt Burdon Kemp, we see the impact that an SCI has on our clients’ mental health all the time, and feel that specialist mental health support is an essential part of rehabilitation, and something that should be available throughout a patient’s life time to help cope with various life events as well as SCI complications, which can occur at any point in time. It is also vital that we raise awareness of the difficulties in accessing this specialist support, so this can be addressed.

How spinal cord injuries may affect mental health

Sustaining an SCI brings about a sudden and drastic change to all aspects of one’s life and adjustment is a slow and gradual process. The challenges that follow an SCI can significantly change day-to-day life. When you are first injured, adjustments to work life, relationships, social life, body image and identity can be very difficult and upsetting. Coming to terms with an SCI, and the impact it has on an individual’s life, can and often does detrimentally affect people’s mental health.

From our experience, depression and/or anxiety are often experienced after sustaining an SCI, and whilst many might say that experiencing such emotions is “part and parcel” of the adjustment process, it is absolutely crucial that mental health following an SCI is treated as seriously as physical health and other SCI complications which may occur. After all, physical and mental health go hand in hand and are interdependent.

Looking after your mental health

For those who have sustained an SCI, it can be difficult to come to terms with not only your physical health, but also your mental health. Due to the stigmatisation of mental health, many SCI survivors are reluctant to seek mental health support, until they already have severe symptoms. This can have disastrous consequences for the individual and their family. Having witnessed many of our clients and their families go through this ordeal, we know how important it is to speak out and seek appropriate help from the available support pathways as early as possible. If you or your loved one is struggling following an SCI, speak out and seek help now.

Adapting to life post SCI takes time. There can be many challenges along the way, including pain, fatigue, financial and relationship struggles, SCI complications, and access issues, all of which are likely to not only adversely affect one’s mental health, but also reduce their ability to seek or access mental health support.

Although some support is available, many people may believe that this is limited to medication. Whilst it is undeniable that resources are limited and more needs to be done to provide adequate mental health support to everyone with SCI (and beyond) who needs it, it is equally important that no one is discouraged from seeking help for these reasons. If you know someone who has suffered an SCI and is struggling emotionally, please encourage them to reach out and contact their GP to find out what support is available.

Treatment/support options for SCI-related mental health issues 

The following are examples of the help and support available to those in need of it:

• Support groups – These can be made up of close friends and family who understand the individual’s personality and the specific challenges that they may face. In addition to this, there are many SCI support groups which bring together fellow SCI survivors, to discuss all issues relating to SCI. These support groups are a great treatment option to show those who are recently injured that many others face similar challenges, share advice on how to overcome those and to highlight that there is life after an SCI. If you feel that someone you know could benefit from an SCI support group, encourage them to seek out these support groups and /or create a small support network of your own. This gives me an opportunity to mention a really insightful webinar series, Sex, Relationships and the SCI man, which the Spinal Injury team at Bolt Burdon Kemp have put together with help from individuals with lived SCI experience, focussing on physical and emotional issues surrounding relationships and sex for men following an SCI.
• Lifestyle Changes – Sustaining an SCI is life changing, but adaptation and lifestyle changes can help SCI survivors to acclimate to life after an SCI. Small changes to diet, exercise, sleeping patterns, meditation and mindfulness can all contribute to a healthy mentality, and therefore improve prospects of overall physical and mental rehabilitation. Introducing physiotherapy and occupational therapy can also help improve one’s physical health, which can in turn improve mental health.
• ·Psychotherapy – Therapy is often seen as one of the more effective treatment options for those struggling with their mental health. The goal of psychotherapy is to facilitate positive change in patients’ lives, to teach them positive coping mechanisms, to achieve better emotional and social functioning, and ultimately, improve their quality of life. Overall, psychotherapy is a great outlet for those who need to vent in a safe space, and to receive reassurance that there is life after an SCI.
• ·Medication – The main aim of treatment with antidepressants is to relieve the symptoms of depression, and to help prevent them from returning. Often medication is used temporarily to make the patient feel emotionally stable again, and enable them to focus on and improve their mental health holistically, using therapy, support groups and lifestyle changes.

Mental health support

For those who have sustained an SCI and are struggling with their mental health, getting in touch with their GP is often the first step. We would encourage anyone with an SCI to discuss what support and treatment options are available with their GP.

Charities and the valuable role they play

Many SCI charities provide helpful support in these areas. We have listed some of the support available through SCI charities and support groups below.

• Spinal Injuries Association not only offer amazing support for all SCI related issues through their helpline offering General Advice, Advocacy and SCI nurses’ input, but importantly provide telephone counselling with their own in-house counselling and well-being officers.  This is truly an invaluable resource and specifically tailored to the needs of the SCI community. At Bolt Burdon Kemp, we are proud to support the charity and we are proud to be their Trusted Legal Partner for the South East of England.
• For those undergoing in-patient SCI rehabilitation, Horatio’s Garden charity provide real havens of tranquillity, in the form of beautiful and fully accessible gardens built within many of the spinal rehabilitation units across the UK. Those struggling emotionally during their inpatient SCI rehabilitation can benefit from the calming effect of nature and gain positivity by taking part in various workshops and therapy sessions, organised by this wonderful charity and their hard working volunteers. At Bolt Burdon Kemp, we are honoured to support this charity and their fantastic work, and we are their Regional Partners for the London and Stoke Mandeville Gardens.
• As a passionate advocate of the needs of people who have suffered a spinal injury in the form of Cauda Equina Syndrome, I could not conclude this blog without mentioning some great support available for the CES community.
• Cauda Equina Spinal Cord Injury is “an accepting Support Group.” They also say on their website: “Everything we do is founded in our core belief that no one should ever feel they are alone. We all have our own life’s journey, but the path shouldn’t be a lonely one. Our commitment is to provide a safe space for sharing, listening, learning, and supporting each other.” At Bolt Burdon Kemp, we are proud to support this Group and have witnessed first-hand the insightful and practical support offered to CES survivors.
• Cauda Equina Champions charity provides support to those who have developed Cauda Equina Syndrome (CES), including peer support and regular support groups . They say on their website: “Always available for people affected by Cauda Equina Syndrome. We aim to bring Cauda Equina Syndrome to the forefront of people’s minds and help people adapt their lives to achieve happy and fulfilling futures. We are committed to raising awareness and we will ensure that CES becomes a household name and that everyone, including healthcare professionals, are aware of the ‘Red Flag Symptoms’ enabling timely diagnosis and management of Cauda Equina Syndrome”. Bolt Burdon Kemp are proud to support this charity and the work they do for the CES community.

What the future holds

Although the NHS have announced a new long-term plan which is said to fundamentally transform mental health care in the UK, it has to be acknowledged that more significant and far reaching changes are required, to ensure that every SCI survivor has timely access to specialist mental health support at any point of their lives.