Body
My name is Roman, and I am 63 years old, married with two grown up daughters and I live in Cambridge, England.
My health issues started in 1999 when, after extensive tests, I was diagnosed with sarcoidosis in the spine. Sarcoidosis is a type of immune disorder. Steroid treatment and physiotherapy to treat it led to a weakened left leg and a neuropathic bladder. At the time, I was working as a senior manager in the food manufacturing industry. Thankfully, I was able to carry on, all be it with some minor mobility issues.
All that changed in late 2018. After two short stays in hospital for a suspected urinary tract infection, my symptoms worsened, and I was rushed to the hospital by ambulance with suspected sepsis. Further tests and polite insistence finally lead to me having an MRI scan that detected a cyst on my spinal cord at T7. Emergency surgery followed and the suspicion of sepsis was confirmed. What followed was a lengthy stay in the hospital with aggressive treatment with intravenous antibiotics.
At this time, I felt greatly weakened and had to use a manual wheelchair. Thankfully, I still had sensation in my legs, but I was unable to stand or walk. Transfers were difficult and getting to and from the bathroom became a real challenge.
During this hospital stay I was moved to various wards and participated in physiotherapy when it was available. Physiotherapy was good but very sporadic. I found out about rehabilitation from a friend, despite being at a major teaching hospital. After further polite and regular insistence, I was eventually put on the waiting list to get into a rehabilitation hospital. After four months in the Cambridge-based hospital where I was being treated, I was moved to a rehabilitation hospital in March of 2019.
My stay at the rehabilitation hospital lasted four months. Five years has passed since then, and I can say with confidence that if I had not received the specialist help and support of the rehabilitation unit, I would be in a far worse place than I am now.
Anything and everything that was offered to me to try, I took up eagerly. After the initial assessment, I was given a daily and weekly timetable of activities that would keep me active every day during my stay. In addition to physiotherapy and hydrotherapy, I was also showed how to use gym equipment and I was offered a wide range of sporting activities to try. I was also encouraged to take my first steps since being injured and I was invited to attend educational sessions on subjects ranging from bladder and bowel management to skin care.
Overall, my stay at the rehabilitation hospital was positive, but occupational therapy and preparation for returning home was not as good as it should have been.
Upon discharge, I was assured by my consultant that I would be a rehabilitation patient for life, and I would be invited for annual check-ups and scans to see if any further degeneration was occurring. However, the COVID-19 pandemic prevented this from happening and I have only received one phone call from an assistant of my consultant.
Since discharge, I have been left to deal with things on my own with very little or no help from any local services. However, I am very lucky to have a great general practitioner who has been very supportive since my spinal cord injury and is on hand should I need any help or advice. Also, since discharge, after only eight physiotherapy sessions, which are paid for by the National Health Service of England, my physiotherapy was suspended. I have since had to pay for private physiotherapy and the use of a hydrotherapy pool, which in turn takes up most of my Personal Independence Payment allowance.
I feel lucky that I have good upper body strength, although rotator cuff issues as a result of my continuing use of a manual wheelchair are starting to come to the fore. My home has had no adaptations apart from a self-funded ramp to the front door.
I lead as much of an active life that I can. I volunteered for a spinal cord injury charity, Back Up, when I was discharged, and I now work four days a week as a mentor coordinator for the same charity. This work has been a lifeline for me as it has given me a sense of purpose, although with a very modest salary compared to what I enjoyed while working in industry. However, I am lucky, as my wife still works full time, and we are on top of our financial commitments. I have a loving and caring family.
Although I am a positive, glass half full type of person, when thinking about the future, I do worry how my SCI will affect me in older age. Despite the overall great care I was given in the hospital, there has been very little, if any, support or care since I’ve been home. As I age, I think I will need some adaptations in my home, although it will be highly unlikely that I will be offered any help or funding from the National Health Service to meet this need.
My current aim is to remain as active as possible and to share my experiences, both good and not so good, with others who are facing a similar journey of rehabilitation after a SCI.
Emergency National Health Service care in the UK overall is excellent. However, the same cannot be said of social care, which is very poor. Once discharged, most people are left to cope on their own and this is where the National Health Service should be working more closely with the charity sector in being able to provide follow up support as well as ongoing care. An ageing SCI population is in urgent need and should not being forgotten. This group should be helped to have a purpose in life without feeling that they are hinderance or burden on society.
So, what lessons have I learned during my ongoing SCI journey?
- Be polite but assertive to get organized treatments.
- Don’t get fobbed off (brushed off or ignored) by the so-called professionals.
- Go into any medical appointment armed with questions that you have thought about and written down.
- Learn from others. The professionals mean well, but they are always under pressure and are not always 100% focused on what might be best for you.
- Listen to the experiences of other patients or people who have lived experience of SCI.
- Learn to listen to your body. You will have good days and not so good days, so on the good days try to push yourself a little harder and on the not so good days, take it easy and don’t beat yourself up.
- Research what financial support and or grants are available to support you.
- Try to remain positive despite any setbacks and try to remain optimistic for the future, whatever it might bring.
- Never give in and aim to keep yourself to be as independent as possible.
- Never be embarrassed or shy of making the ask. After all, if you don’t ask, you don’t get, and the worst thing anyone can say to you is ‘no.’
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As part of a grant to study how differences in acute care and rehabilitation length of stay affect outcomes for people with spinal cord injury in different countries, the Center for Rehabilitation Outcomes Research has collected blog posts by people with SCI in different countries about their injuries and rehabilitation. In these posts, writers from the United States, the United Kingdom, Canada, Australia, and The Netherlands share reflections on their unique inpatient rehabilitation experiences, what worked, what they wanted more (or less) of in rehabilitation, what it was like going home, and how they are doing today. The grant is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (grant 90DPHF0012).