Independent living with Shared Decisions.
Executive summary
Unlocking the power of shared decision-making beyond the hospital.
Roger’s story is shared here to highlight the benefits of shared decision-making and the importance of collaboration between a person and their health and care professional. The person and health and care professional have the expertise to bring to the decision-making process, so health professionals must be willing to involve patients in decisions and have the skills to have the supportive conversation. (NICE guideline NG197)
Roger has a regular team of NHS professionals and support workers who visit him at home. Roger calls all the staff by their first names and likes knowing who is coming on any given day.
Roger said, “I’ve got the best views here at home.” The river runs alongside my property. My carers and other healthcare professionals treat me well, and I am now fully included in my care and treatment.
Introduction
Hello, my name is Roger Woods. I am 96 years of age and live in Kendal. My wife passed away nine years ago, and I have two sons, the eldest of which has recently had two heart attacks. I was in the Army and served in Italy at the end of the Second World War; upon leaving the Army, I worked in local governance and education.
This is my experience of shared decision-making (SDM) in my health and care journey.
The story
I had been experiencing back pain, and before Covid, I was attending a pain management clinic. In April 22, I had what I describe as an accident. I wanted to change my duvet and stood on a little stool to get a replacement out of the cupboard, as I pulled the duvet down, I slipped off the stool and twisted my body, my back immediately went, and I spent two weeks on and off in bed before seeing my GP on the 6th of May 2022.
Before my accident, although having back pain, I had been away on holiday to Glen Torridon, where my family had access to a lodge. I walked 1500 ft to the nearby loch. I was very active prior to my accident and walked at least 8 miles twice a week.
My GP initially thought I had Cauda Equine Syndrome. My symptoms included low back pain, sensory and motor loss, immobility, and double incontinence. An appointment was made with the Neuro Team at Royal Preston Hospital (RPH). However, I was told to call into the Emergency Department at Royal Lancaster Infirmary (RLI) on my way. Once at RLI, I was admitted to a ward for five weeks.
Before my discharge from RLI on the 10th of June 2022, I felt that the mood had changed and I was being seen as a bed blocker, the atmosphere became unpleasant and hostile. When I returned home, I could only describe my home as full of strangers; teams of people were milling around, and I did not know who they were.
Once home, I got my outpatient appointment at RPH, where I was diagnosed with spinal canal stenosis C6/7 with large central disc extrusion causing cord compression and multi-level stenosis in the lumbar spine, unchanged from previous scans.
It was agreed that due to my age, I was not suitable for surgery, and it was explained to me the best I could hope for was to be able to walk a few steps around my own home. Supportive Discharge (SD) worked on my sitting balance with me 2-3 times a week. I practised standing with an electric standing hoist.
In September 2022, the Community Occupational Therapist (OT), Alex Tremeer and Physiotherapist (PT), Jodie Birch, took over from (SD) and continued to work with me until I could stand for 2-3 minutes; I also practised my exercises independently when sitting and whilst in bed.
In January 2023, I had a review with my (PT) and (OT). It was decided with me that a Sara steady would be ordered and delivered in February 2023 so I could use the Sara steady to do a 90-degree transfer rather than an electric hoist assisting me.
My (OT) & (PT) visited again in March 2023. It was decided with me that I had plateaued and was to be discharged from (PT). Still, I was recommended to continue my exercises and stand with my carers; I was included in the plan. Although (OT) were still involved until October 23, assisting with wheelchair and community bathing issues.
(OT) & (PT) jointly visited me in November 2023 to assess me. Physio is currently visiting me twice a week to practice walking.
Since my discharge from RLI, I have been cared for in my home four times a day by St Anns Healthcare Ltd, who have been great.
I actively did the exercises I was given and progressed from standing 2-3 times a day for a couple of minutes to standing 5-6 times a day for up to 8 minutes. I can now walk a few steps using my Zimmer frame with the assistance of my carers on either side of me and someone behind pushing my wheelchair in case my legs collapse.
My short-term goal is to start walking in my home with 2 x carers and the wheeled Zimmer frame. My long-term goal is to walk independently in my home and manage toileting to be less reliant on my carers. Roger jokes, “I have so much NHS equipment in my home now I should be charging the NHS to store it”
Action By the 30th of January 2024: Review our Trust NICE NG197 gap analysis and continue to roll out the Shared Decision-Making principle using the “Ask 3 Questions” model which is the patient focused part of the national Shared Decision-Making programme. Research shows that encouraging patients to ask three simple questions leads clinicians to provide higher quality information about options and their benefits and harms.
Update: The Trust now have a shared decision-making project group who are focusing on developing SDM supportive systems, training teams to improving communication between clinicians and patients and preparing patients and public by using resources to help increase individuals’ awareness of SDM. This work is monitored by the Patient Experience Group.
References
National Institute for Health and Care Excellence (2021). Overview | Shared decision making | Guidance | NICE. [online] www.nice.org.uk. Available at: https://www.nice.org.uk/guidance/ng197 .
Anon, (n.d.). Shared Decision Making – Ask 3 Questions | aqua - Advancing Quality Alliance. [online] Available at: https://aqua.nhs.uk/resources/shared-decision-making-ask-3-questions/.
If you would like to share your story, please contact the Patient Experience team patientexperience@mbht.nhs.uk