UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

People with ME are working hard to ensure the patient’s voice and the reality of the lived experience is heard in Bristol…..

 

I would like to know what the patient involvement looks like for this project. I assume this is via BACME.

 

Just came across this paper by Gladwell and a couple of others, not overly encouraging.

https://www.tandfonline.com/doi/pdf/10.1080/21641846.2023.2175579

 

Thread created here, Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with ME/CFS 2023 Jones, Gladwell

 

Hi, Yes I also have ME (thats why I retired early for te University of Manchester) and have been carer of sone with ME for many tears

 

Indeed, that is why we are working with BACME (and PwME) to co-produce the toolkit to ensure it is fit for purpose and fits in with other aspects of clinical practice (which are big barriers to the use of measurement tools in practice) and will also produce training materials as part of the project dissemination plans. It is possible that, in the future we will do further work to look at the process of and impact of implementation, but that's for another day.

 

I am sorry you find my work mortifying, I confess it is not a reaction I have ever come across before. could you explain why you are mortified?
I see you do not know Dr Peter Gladwell. I can assure you that he fully 'gets' ME on both a personal and professional level. He is a physio with a PhD and researches ways to use measurement tools in clinical practice. His experience, know-how and clinical leadership (locally and nationally) are great assets to the project and I am lucky to have him on the team.
He leads a service in North Bristol NHS Trust which covers both ME/CFS and Chronic Pain, which is an unusual combination. I presume you are familiar enough with the clinical practice to know that service development is often an ad-hoc business and one has to often make the most of a less than satisfactory situation. As a highly experienced and skilled professional, Pete and his team are more than able to use different approaches for different conditions, and do so on a daily basis.
He is also a senior leader in BACME, which is a further asset. If one wishes to influence/change practice then one has to engage, constructively and collaboratively with the clinicians who are delivering services. A key tenet of the project is that we will work with both pwME and clinicians to co-produce a toolkit that is fit for purpose for all

 

Indeed, we were planning to do so and some of hte conversations a wee while ago about how to measure activity/function have already influenced my thinking. We will be convening 'patient' and clinicians advisory groups for just htis purpose and all are welcome to put their names forward.

 

Why would one assume BACME are providing PPI for pwME? That would be silly as they aren't pwME. Three of grant holders have ME and we will lead the PPI for pwME. We will convene a PwME advisory group who will provide PPI input.

 

Why do you find this not "overly encouraging"? It is highlighting the mismatch between current measures and the difficulties pwME report. It contributes to the case that we need new measures that are co-produced with PwME.

 

No he doesn't. I don't know where you got this impression from. He fully understands and implements pacing and

 

yes Hi Sarah, great to have your input discussing this project. I cant imagine how hard it must be to care for someone with ME while also having it yourself. Your efforts to improve things for PwME in the NHS are appreciated particularly if you are also ill. Good to have someone with ME on the team.

That sounds good. Good luck with it all

 

very happy to hear that, i was concerned about Dr Gladwell's input, your reassurances are welcome.

 

Jo, Im sorry your heart has sunk. The gold standard to which you refer is the recommended methodology for the development of PROMs from the US FDA. It details the methods and standards to develop patient reported outcomes to ensure they are fit for purpose, be that clinical or research use. These have been accepted and used world wide (by me and many others) for years. Have you heard of COMET? I presume you have, given you work in RA. Their way of working is based on the same 'gold standard'.

I won't start an essay on clinical measurement, and the pros and cons of PROMS right now but I am happy to discuss. Safe to say that my research in other chronic, disabling, complex conditions (and other people's of course) has shown that using a range of PROMs (I prefer 'clinical measurement tools' tbh, as measuring outcome is only one small element of their usage) improves patients' and clinicians' understanding of the nature and severity of the difficulties patients face and their needs; enables more accurate and objective monitoring of progress and outcome; facilitates treatment planning, speeds clinical and joint decision-making, enhances communication both between professionals and between patients and professionals; and supports service evaluation and development.
I don't doubt you felt asking folk how they were was just dandy, but It doesn't offer that degree of information, which is why effective services expect more.
Help me understand, what are you sceptical about? Why do you think charities should not spend their money on research that will support services to deliver more effective patient-centred care? What are the 'healthcare politics games' of which you speak? The whole point of co-production is to work collaboratively and constructively (with pwME as well as clinicians) to build on all parties' knowledge, skills and experience so the end product meets everyone's needs and 'works' in practice/real life. The end product will be "what professionals like to think helps" as well as what pwME (and their supporters) think will help, plus the data that supports it. Whether you feel that is 'proper' evidence or not reflects on your understanding of this field of research than the methods used.

 

Good. To slip into the vernacular - he is a good bloke and on our side.

 

My hope for a project like this would be to enable symptom contingent pacing taken on board as the new status quo. I suppose if the end result turns out to be a substantial step forward from the current mishmash of some staff being more up to date and others still based on PACE mentality then it will be advantageous to have Gladwell involved to facilitate implementation.


Eta I realise this isn’t revolutionary but nevertheless reducing risk to PWME in the context of existing provision is still of some value.

Yep, thats the idea