Our chronic fatigue syndrome/encephalomyelitis service is nice (?!), but is it patient friendly? experience of going beyond audit

MeSci

MeSci

Senior Member (Voting Rights)
Source: Archives of Disease in Childhood
Vol 103, Suppl 1, G18
Date: March 2018
URL: http://adc.bmj.com/content/103/Suppl_1/A7.2

Our chronic fatigue syndrome/encephalomyelitis service is nice, but is it patient friendly? experience of going beyond audit
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AM Taylor, J Man, EJ Parish, T Segal
- Children and Young People's Services, University College London Hospitals NHS Foundation Trust, London, UK

Abstract

Aim

To assess the quality of diagnosis and management of Chronic Fatigue Syndrome (CFS)/Encephalomyelitis (ME) in a tertiary Service against NICE guidelines, along with views of the young people assessed.

More at link.
 
Presumably this paper was written because the authors had no clinical work to do, having had only 30 referrals to the service in total over a 12 month period. So they had to do something to justify paying them a salary. It’s unfortunate perhaps for them that the overriding impression is that the service is a waste of money and effort for all involved.
 
It's such a joke.

First, it seems that only 30 people got referred to the service over a 12 month period. 3 didn't go, so that left 27.

Of the 27 patients, when parents or the patient were contacted, only 10 'answered the telephone'. So that left 10, 8 of which were parents and 2 of which were patients.

Of the 10, only 5 agreed with the statement ‘this is a good service for my friends and family to be looked after in if they needed similar treatment or care’.

When we ask for more research, this isn't the sort we are asking for.
 
We've shifted the thread to a research subforum. Our subforum headings aren't great for this type of service delivery research, there is only 'biomedical research' or 'psychosocial research' to choose from. We've put it in psychosocial research as the service offers GET and CBT.
 
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Looks to me like they are trying to hold on to their jobs and / or jumping through required paperwork by doing a service evaluation - and doing it very badly. What I don't understand is why a journal would publish such unscientific crap. All it boils down to is - we phoned a few people and asked if they liked us.:banghead::banghead::banghead:
 
This was published in the Archives of Disease in Childhood, which is the official journal of the Royal College of Paediatrics and Child Health.

This paper is an abstract presented at the RCPCH's Annual Conference, held in Glasgow, 13-15 March 2018.

One thing that stands out is that the percentages reported don't make sense. Four percentages are reported as being based on a sample size of 27 - but two of these four (43% & 73%) are not outcomes that can be obtained by selecting any whole number as a proportion of 27.

(They had 30 referrals in all. The four percentages cannot have been obtained as proportions of 30, either.)
 
Flying Dutchman said:
One thing that stands out is that the percentages reported don't make sense.
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Well spotted @Flying Dutchman.

I think none of the four percentages work with a divisor of 27. One works with a divisor of 30 (22/30 = 73.3%) and perhaps they could have another one with a divisor of 30 if we excuse bad rounding (26/30 = 86.7%).

Results 30 patients were referred to the CFS/ME service, 3 of whom did not attend and were excluded from analysis.

We assessed 5 NICE guideline criteria that relate to young people, all of which have a 100% standard. Three criteria focus on providing patients with relevant information. 86% of our patient records documented advice on symptom management, 71% on work/education, and 43% on general principles of CFS/ME. The service was 100% compliant with criterion 4 (a diagnosis of CFS/ME should only be made when symptoms have persisted for 3 months). The final criterion assesses how many patients with mild/moderate CFS/ME are provided with cognitive behavioural therapy and/or graded exercise therapy; 73% of patients received one of these.
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MeSci said:
Our chronic fatigue syndrome/encephalomyelitis service is nice, but is it patient friendly?
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The title implies that the service is compliant with the NICE guideline criteria, it's just that those patients don't seem to be appreciating it enough.

But regardless of how they came up with the percentages, the figures suggest much less than NICE compliance. Given that they only had 30 referrals and only 27 young people to treat in one year, you'd think they could manage to tell all patients something about symptom management, education, and general principles of ME and record that in the patient notes.

I mean, it's not a high bar. A couple of leaflets spouting BPS nonsense, a standard letter for the young person to give their school and some boxes to tick on the patient records would cover it. And yet even that seems too hard.
 
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