Service users’ and parents/carers’ experiences of a paediatric chronic fatigue service: A service evaluation, 2023, Hartley and Purrington

Andy

Andy

Retired committee member
Objectives
This service evaluation explored the experiences of families receiving care in a paediatric chronic fatigue service. The evaluation aimed to improve service provision across paediatric chronic fatigue services more widely.

Methods
Children and young people aged 7–18 years (n  =  25) and parents/carers (n  =  25) completed a postal survey exploring experiences of a paediatric chronic fatigue service. Quantitative data were analysed descriptively, and qualitative data were analysed using thematic analysis.

Results
Most service usersand parents/carers (88%) agreed that the service met their needs, that they felt supported by staff, and most notably, a large portion (74%) reported the team increased their activity levels. A small number disagreed (7%) with statements relating to positive links with other services, ease of talking to staff and suitability of appointment type. The thematic analysis revealed three themes: help managing chronic fatigue syndrome, experience of professional support and accessibility of service. Families reported benefiting from increased understanding of chronic fatigue syndrome, learning new strategies, the team linking with schools, feeling validated and mental health support. Accessibility was a particular problem including the service location, setup of appointments and difficulty contacting the team.

Discussion
The evaluation presents recommendations for paediatric Chronic Fatigue services to improve service user experiences.

Paywall, https://journals.sagepub.com/doi/10.1177/17423953231178185
 
From the article: "...learning new strategies..."

IMO, there aren't a lot of various strategies or ways to manage ME. There are not a lot of options. If one has been dealing with this disease for a while, often the pwME, or the caregiver will have tried the limited "strategies" available.

Rest, and pace activities. Good nutrition if you can afford it. But the concept of tricks or tips, or new strategies to manage ME, does not reflect the severity of this disease. Managing ME is a constant balancing act. There are no easy solutions.

ETA: Actually, there are no solutions to ME, easy or otherwise.
 
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The paper said:
Most service usersand parents/carers (88%) agreed that the service met their needs
Click to expand...
About as believable as winning an election with 101% of votes. And only 25 patients? Ridiculous.

And we know that those clinics only take the mildest cases, so this is not a representative sample.

It's the complete apathy surrounding this ideology that keeps it alive. There are people overseeing those funds and they clearly don't care that the results aren't there, they're even OK faking results.
 
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