Lack of information prompts woman to fund essential medical resource. The Spinal Injuries Association (SIA) is launching a first-of-its-kind online training course for healthcare professionals, aimed at filling the gap in knowledge about caring for people with a spinal cord injury (SCI) who are approaching the end of their lives.
Entitled ‘A Fulfilled Life: The Final Chapter’ the course is available to all healthcare professionals for free here: https://www.spinal.co.uk/healthcare-professionals/courses/fulfilled-life-final-chapter/
Collaborative working between SIA Specialist Nurses and Princess Alice Hospice in Esher, Surrey has resulted in the development of this module, the very first of its kind. It gives information about SCI and the specialist care needed in the final stages of life, something which is too often lacking in a general nursing/care setting.
Unusually, the training course has been sponsored by a member of SIA, Mary Tye, whose own spinal cord injury was sustained while in her eighties. Her daughter, Leo, was dismayed by the dearth of medical knowledge about her mother’s situation. She explains,
‘My mother broke her neck 13 years ago, so we’ve had all of her nineties to prepare for her end-of-life care plan. I’ve since learnt that most medical professionals don’t know much at all about spinal cord injury, and we’ve had to learn a lot about it ourselves.
When I googled ‘end of life care for spinal injured people’ there was absolutely nothing. This course has been created to support medical professionals, and the families of SCI people, to ensure that their relatives get the very best treatment in that final chapter of their lives.
It makes me and my family glad to know this collaboration between SIA and the Princess Alice Hospice has produced a first-class course, which enables professionals to know they’ve done the best they can for the people they care for.’
Carol Adcock, SIA Academy Lead and SCI Nurse Specialist, says,
‘We can’t thank Mary and her family enough for what they’ve done. Their generosity and inspiration will help us to help so many more SCI people in years to come.
We’ve been pleased to design this course together with the palliative care team at Princess Alice Hospice. Together, we hope that we can make that final chapter easier to bear for the patient and their loved ones.’
Jane Berg, Deputy Director of Skills, Knowledge and Research at Princess Alice Hospice said:
‘We were delighted to work with the SIA to produce ‘A Fulfilled Life: The Final Chapter’. The Hospice provides expert palliative and end of life care; we deliver care to people who are approaching the end of their life as a result of many different illnesses and conditions. We became aware that people with spinal cord injury are increasingly living longer and experiencing the additional illnesses and frailty that age brings. They also have specific care requirements from their spinal injury which are not always well understood.
‘Working with the SIA has been fantastic and has allowed us to share our different but complementary skills and knowledge to produce this free resource.’
The Final Chapter course has already received some very positive feedback from healthcare professionals. Peter Bakowski, care manager at the Active Care Group, said:
‘Although I’ve had about ten years of experience in working around SCI, I fully enjoyed the training, and refreshed my knowledge. Thank you for providing very professional and in-depth material.’
CASE STUDY – Tina Lancaster and her father David, from Dorchester, Dorset
After feeling a bit under the weather, David, pretty fit as a guy of 83, walked himself into the hospital for some tests. He emerged eight weeks later as a paraplegic in a wheelchair.
Tina, David’s daughter, says, “All we really knew was that he had myeloma cancer, and he was unlikely ever to walk again. We had a massive gap in our knowledge when Dad was discharged. If he had been involved in an accident and received a T4 spinal injury, he would have gone through some rehabilitation programme. We didn’t have any of that.”
David returned home with complex health needs. Myeloma cancer had caused kidney and bone damage, with the latter leading to a T4 pathological fracture and metastatic spinal cord injury, leaving him paralysed from the chest downwards.
‘Dad’s treatment included radiotherapy and an aggressive chemotherapy regime, making him very sick and weak. His mental and physical health had deteriorated to the point that his nutritional needs were no longer being met. We had the end-of-life medication brought in as he could not feed himself at one point and was in so much pain. As we were preparing for a CHC funding assessment, I came across the Spinal Injury Association, and they have been a fantastic support and resource.
Our care teams have a lot of combined experience. Still, they have learnt about the complexities around autonomic dysreflexia, how to move Dad without causing pain, dealing with pressure sores and catheter care—or having a heart attack in his wheelchair! I never want to put our carers in a position where they feel helpless.
We have never given up on Dad, but it is tough when you don’t know what you don’t know. I am so excited that this training exists. Proper care can make such a difference to the quality of life when there’s not so much of it left. Dad feels much stronger now and is a living, breathing example of that.’
You can watch Leo Type’s video here.
Cover images:Mary Type with her daughter Leo
Image 2: Tina Lancaster with her father David.
Spinal Injuries Association is the patient voice of the 50,000 people paralysed by spinal cord injury and the hundreds of thousands of people who are their families, friends and carers. We offer the hope, confidence and practical skills to help people rebuild their lives, return home and lead a fulfilled life. Every day seven people sustain a spinal cord injury – 2,500 people per year.
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