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How an emergency care plan helps people with SCI advocate for better healthcare
Having to go into a general hospital environment is filled with anxiety for many living with spinal cord injury – an emergency care plan can change all that.
For many people with spinal cord injury, being admitted to a general hospital is a daunting and often terrifying prospect as many healthcare professionals do not realise their care needs, leaving patients with pressure ulcers and suffering poor bowel care.
Due to the implementation of emergency care plans more and more people are given the tools they need to advocate for better healthcare. Spinal Injuries Association (SIA) shares how an emergency care plan can transform a hospital stay for someone with a spinal cord injury. “I’m 64 and have no relatives, so I’m forced to self-advocate when in hospitals or taken in, and I don’t do that well due to PTSD. Having the emergency care plan kept in my bags/pockets too is a reassurance for me.”
An emergency care plan (ECP) contains key information to help healthcare professionals properly manage care outside of SCI-specialist settings.
In the event of a planned or unplanned hospital admission, patients can present their SIA clinically validated ECP, which contains crucial information, including risk of pressure ulcers and autonomic dysreflexia, bowel and bladder management, and respiratory care.
As the initiative is going through the process of accreditation by both the Royal College of Nursing and NHS England, Spinal Injuries Association reflects on the feedback it has received from their members who have used their ECP.
For one Spinal Injuries Association member, having an ECP has relieved her anxiety after a traumatic experience with the ambulance service when they failed to listen to and engage with her needs relating to her spinal cord injury. She has no relatives, so she is forced to self-advocate when in hospitals or taken in.
“The emergency care plan makes me feel far more empowered to self-advocate, even if it takes me time to produce it!”
For Chris Yates, his ECP proved invaluable when he was sent to Accident and Emergency with severe burns on his hands from a barbeque accident. Chris got in touch with Spinal Injuries Association to help ensure his care needs were met.
He said: “I was able to email that ECP document to the matron that was going to be looking after me and everything was put in place. There was a lot of weight lifted off my shoulders knowing that they knew about my spinal cord injury requirements.
“Having to go into that general hospital environment is filled with anxiety. Make sure you contact the SIA to set up your emergency care plan.”
Danny Byrne, support network coordinator for the East Midlands at Spinal Injuries Association, first got his ECP after being left for 11 and a half hours on a hard trolley in A&E when he went in with pneumonia. In no state to advocate for himself due to his illness, Danny had his wife call Spinal Injuries Association, who immediately set up an ECP and liaised with the hospital to get Danny an air mattress and the support he needed.
In the time that Danny was in A&E, he developed a grade four pressure ulcer that put him on bedrest for five months. For Danny, it felt like being back at square one as he lost all independence, bringing back traumatic memories of his initial recovery after sustaining his injury.
Since then, Danny has used his ECP five times and has noticed a vast difference in his hospital stays: “It comes up on the screen, so within a few minutes of me being in A&E, I’m hearing medical staff saying this patient needs this mattress and he’s got this condition, as opposed to having almost no idea what was happening the first time I went in.”
Danny has even noticed a difference in his own involvement in his treatment, stating: “Because of that ECP, I’ve had people ask about my condition as opposed to telling me what they think about my condition and how they’re going to proceed. It’s quite nice just to have that bit of validation of being what they call an ‘expert patient’. It’s nice when they’re asking me how I would proceed or if I’m okay with what they’re doing.”
For Danny, knowing that he does not have to have difficult conversations with medical professionals about how they should be treating him has relieved a great deal of anxiety, as he no longer feels like he is telling people how to do their jobs.
“It does take away that anxiety of having to have conversations that you shouldn’t have to deal with as a patient. The anxiety of at least that one thing is off the list, which is good because it’s not nice.”
Chris Etches got his ECP one year after sustaining his spinal cord injury. Although he had not been to hospital since his injury, Chris had anxiety surrounding the possibility of being hospitalised.
He said: “You read so much on social media about people having negative experiences when they go into hospital because care staff don’t know how to look after them, and that fuels the anxiety. I was anxious about what happens if I end up in hospital. What happens if something goes wrong? Will I get to the right place? Will the people that are looking after me know what to do with me? So yeah, the anxiety was there.”
When Chris broke his fibula, his ECP was put into action during his three-day hospital stay. As well as helping hospital staff understand his needs when Chris was unable to communicate due to painkillers, the ECP helped with Chris’ stay on the ward. He said: “I emailed a copy over to them, and they went and got me the proper bed, the air mattress, the checks for turning, making sure that my liquids, my fluids, and everything were right, down to using a different, more suitable type of catheter.”
Not only did Chris find it useful for his own comfort and peace of mind, but he reflected on how his ECP helped NHS staff:
“The staff loved it. They thought it was absolutely amazing because it told them everything that they needed to know and what they needed to do and how they needed to do it.”
Article published on 25 September 2024 by Neuro Rehab Times
For more information about Emergency Care Plans (ECP) please get in contact with your nearest clinical specialist at Spinal Injuries Association: