As you all know, I’ve been campaigning for a reporting system to report harms from non-pharmaceutical ‘treatments’ since November 2021 (after the NICE guideline was published). You can find all the history of the Shake It UP campaign here in one place.
The latest part of this campaign has been to see if our reports of harm could be logged as ‘Patient Safety Incidents’ because there is a place to report those and generate data. I advised pwME who have been harmed by GET or CBT recently to log these harms here. When I made the suggestion it was with my troublemaker head on and I figured, if nothing else, the change in data logged would spark someone’s interest at the other end of the reporting system! I had zero idea if any reports made here would be taken seriously or just deleted. This remains a work in progress and I am waiting for email responses from various relevant agencies. Here are two videos I have recorded on this subject :
‘National Reporting and Learning System (NRLS)( October 2023)
The LFPSE is the new NRLS!! (Too many letters!!) (Sept 2024)
At the exact same time that I am raising this issue, I am also a member of my local hospital’s patient, carer and family group and attend meetings virtually. I am grateful that inclusion in this group has lead to participation in a number of Hampshire-based initiatives. I used this membership as an opportunity to ask a question of the person who deals with ‘Patient Safety Incidents’ in this hospital via the lead of the group.
I asked –
‘I’ve looked through the XXX with interest as it may link up with work I have been doing on a national scale since November 2021. Would ‘patient safety incidents’ include patients with energy impaired illnesses (such as M.E/C.F.S and Long COVID) being told to increase their activity levels by staff/hospital literature. NICE states not to recommend increased activity/exercise as a ‘treatment’ as it is potentially harmful for people living with M.E./C.F.S and it is known, scientifically, that half of Long COVID cases meet the diagnostic criteria for M.E/C.F.S. Yet patients around the UK are being told to increase their activity levels by NHS hospital staff. When they are harmed (symptoms deteriorate for a long period of time – months, years) they complain to the NHS trust but the complaint goes nowhere and isn’t collated centrally. This happened to me personally 3 years ago.
Would participating in increased activity under the instruction of hospital staff or literature/website content be classed as an ‘incident’? I would argue that it puts patient safety at risk’
I received a response this week –
‘As far as any physical activity advice for patients with ME/CFS the expectation would be that the clinical team would provide advice and guidance and would take an individualised approach for patients who choose to undertake physical activity or an exercise programme. This would be for patients who would like to try and increase their physical activity as they are finding this very limiting It is recommended that physios who have specialist training in this area are available.
I understand that in order to do any graded exercise therapy ,establishing an individuals baseline of achievable exercise or physical activity is key. To do this there will be a degree of trial and error guided by the patient feedback on their fatigue levels so that changes can be made. This would not count as a patient safety incident, much the same as titrating medication doses to get the desired symptom control. If there are concerns regarding the therapy received or advice and guidance received then the correct route is via PALS/Complaints
I am very sorry about your experience when you complained as there should be a formal review process with the clinical team involved to provide you with answers. (I replied and said I had gone down this route and it was resolved)
This is my key takeaway –
‘This would not count as a patient safety incident, much the same as titrating medication doses to get the desired symptom control.’
The more I work on the issue of the lack of a system to report harms from non-pharmaceutical incidents the more I seem to go down a rabbit hole. Every department seems to have a completely unique response!
I’m still persevering with this because pwME are STILL being told to increase exertion as a ‘treatment’ by some in healthcare. The need is still alive and kicking.
Love
Sally
and Foggy (OBVIOUSLY) xx
Reminder – I closed the Shake It UP petition a few weeks ago and am now concentrating efforts on ‘behind the scenes’ work with this campaign. Thank you to all who signed, commented and shared the petition since November 2021.