Shake It UP, NICE and the National Reporting and Learning System (NRLS)

Shake It UP continues – CAMPAIGN INFO

This blog is a follow on from everything I said in this video 3 weeks ago.

National Reporting and Learning System

I contacted NICE to make sure that I wasn’t going to be pursuing this issue like a dog with a bone unnecessarily. I wanted to know –

  • Do they consider NRLS data within guideline reviews?
  • Is it the ‘right sort’ of data
  • Would submissions by the public on this type of system hold any weight within a guideline review?

This is what I emailed to NICE on 31st October 2023 –

I am writing to you now regarding the National Learning and Reporting System (NRLS) in relation to reporting harms from non-pharmaceutical treatments.
As you know, I’ve been campaigning for a reporting system for non-pharmaceutical treatments since November 2021 due to NICE saying there were no records of harms being reported relating to CBT/GET for M.E/C.F.S. I’d been an advocate for 7 years at this point and knew that hundreds, if not thousands, of people had reported harms to their NHS Trust, CCG, Healthwatch, PALS etc.
I did not know until 2 weeks ago that the NRLS existed, neither do the thousands of M.E/C.F.S patients who follow me on social media. Is data from the NRLS included in the work/remit of a NICE guideline review?
I have taken a look at the NRLS and it is exactly the type of system I have been campaigning for and I do not understand why harms from CBT/GET have not been logged onto this system by healthcare staff and patients (other than patients not knowing it exists) and why data was not available to you in 2021 as this system has been active since 2003, if not before.
Would NICE support this system being used to report harms from non-pharmaceutical treatments? Given the NRLS is currently being ‘updated’, I can see no reason why its scope cannot be widened (if it is exclusive of non-pharmaceutical treatments currently).
I’d be grateful to know your thoughts.
Best wishes,

Their reply, received 9th November 2023 – (bold text applied by me)

Dear Sally,

Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (NG206).

I have spoken to colleagues within the guideline development team, and they have confirmed that the NRLS wasn’t used in the development of the guideline. The data wasn’t highlighted when we undertook the call for evidence as part of the guideline development and we cannot confirm whether this data would be used in the future.

As part of our 5-year strategy we are currently developing our approach to updating our recommendations. To ensure that our guidelines stay up to date and reflect significant shifts in the evidence base, we will develop a methodology that is quicker and more flexible. Moving away from producing full guidelines to a more modular, living approach, our recommendations will incorporate the latest evidence and newly-recommended technologies to maximise uptake and access for patients. The process for how this will work is evolving. We are moving towards a more flexible and reactive process, which means that we are no longer following a fixed schedule for reviews. Currently there no plans to update the guideline.

I hope this information is useful for you.

Kind regards


Whilst the reply didn’t fully answer my questions, it has shed light on a few things.

‘Confirmed that the NRLS wasn’t used in the development of the guideline’ – OK, but why not? I’ll contact the NRLS team and ask them again whether harms from non-pharmaceutical treatments can be logged by healthcare staff and patients in the absence of another appropriate system and/or if a specific non-pharmaceutical harms question could be added to their template.

‘We cannot confirm whether this data would be used in future’ – Future NICE guidelines are not the only reason we need this reporting system. Data will also help to inform future policy and fill a knowledge gap once and for all.

‘The process for how this will work is evolving’ – I believe this makes the need for this data greater than before as we do not know what data will be essential the next time NICE updates their guideline. We should be prepared. Surely the quickest way to see if a ‘treatment’ is harmful is to look at a database where harms from that ‘treatment’ have been logged?

From Warm and Fuzzy Prevention of Harms to Data, Data, Data

I campaign from the patient perspective (because I am one!) and always centre the patient experience in my work. However, politicians and the NHS are not as warm and fuzzy as me. They don’t want the equivalent of Miss World’s ‘world peace’ for people living with M.E. After 2 years of campaigning with Shake It UP, I am changing tack. I am now going to be leading with ‘data, data, data’ and what data SHOULD be collected by organisations responsible for patient safety.

I will be emailing a range of organisations asking if current data collection is legal and up to the required standard.

Wish me luck!

Love Sally

and Foggy OBVIOUSLY!!


ps. Foggy is now in Kent and will be off on a Caribbean cruise with Ryn and John at the end of the week!

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