'Benchmarking' exercise by our local NHS

Our local NHS provider and lead commissioner have stated they will be going through a 'Benchmarking' exercise...

So I thought I would do a little digging taking into account the current parlous state of NHS Services for ME and CFS...
any thoughts would be welcome !?

https://commissioning.libraryservices.nhs.uk/commissioning-cycle/benchmarking
(my emphasis)
Last Updated on July 9th, 2018

Commissioners have identified best practice and innovation as essential aspects of their information needs. Commissioners need to be kept up to date with best practice and innovation not just in the UK but worldwide. This will enable them to benchmark existing services and influence service redesign.

However, searching for best practice and innovation is not always simple as it relies on health services sharing their experiences; and when they do publish they are often not robust evidence based accounts, but a commentary.

This section will include useful resources for benchmarking, as well as search terms. Information on best practice and innovation can be found in best practice and innovation.

 

https://www.whatdotheyknow.com/request/cfs_clinical_exercise_assessment_8

CFS - clinical exercise assessments and objective outcomes at NHS clinics
Dear NHS Benchmarking Network,

I am trying to obtain information on the effectiveness of current practices at NHS funded CFS clinics and appear to be being sent on a wild goose chase. I am wondering how to obtain the following information about CFS and/or in the alternative the treatment data kept.

I seek information on the changes in the physical health of CFS patients, as a result of attending the CFS, clinic between 2007-2017, including but not limited to each of the following parameters.

Physical functional capacity - objective changes
i) two day CPET test
ii) 6 minute walk test
iii) Up and go Test
iv) Oxygen uptake while walking
v) resting heart rate
vi) heart rate variability
vii) activity as per actigraph
viii) activity as per pedometer
ix) ataxia
x) daily temperature

Physical functional capacity - subjective changes
i) return to school/work part-time
ii) return to school/work full-time
ii) change in hobbies/sports

Physiological changes
i)anaerobic threshold
ii) chrontropic incompetence
ii) diabetes insipidus
iv) orthostatic intolerance

Yours faithfully,

Robin Ellis

 

In relation to ME how do we define best practice?

In the UK what NICE guidelines currently set out as best practice, what the specialist ME/CFS services provide, what GPs try to do and what patients would consider as best practice are all likely to be radically different to each other (except perhaps NICE and the specialist services).

We have discussed this in relation to whether we should be drafting our own patient version of NICE, but is their any mileage in trying to identify any services that we feel have 'got it right' and/or defining what we think best practice should look like?

 

Exactly Peter! My thoughts and my concerns at the local provider manager being let loose on this.
He will 'cherry pick" in his own image, and quote 'NOD' at Bristol , ... which was closed down in 2015... BACME historic perhaps.
This exercise is intended to serve his agenda and not serve ours, so we need to be prepared to counter this.

 

I suspect that virtually no specialist services have any of this data. Certainly when I attended the Sheffield service some years ago there were no objective measures of my functioning taken at all, and I think, beyond the initial assessment, no attempt to measure outcomes by subjective questionnaire.

However it is important that we know definitely that this data is not being collected.

 

....and this fact needs conveying formally to the NICE review?

 

Useful background from Northern Ireland and Hope4ME and Fibro

 

https://bmjopen.bmj.com/content/4/6/e005083 also useful background.