Service evaluation
Feature
Have you achieved change ?
Patients were asked the question : Do you feel you have achieved change ? For this question , they were given a list of changes and asked how much they agreed with the statement , using a Likert scale ranging from ‘ very much disagree ’, to ‘ very much agree ’.
Options for other changes not listed were given and these were themed into empowerment and awareness , changes to the physical and social environment , feeling supported , psychological and wellbeing benefits , and descriptions of functional changes – preventing further disability , sitting and exercise tolerance , self-care including personal care and feeding , and generally improving quality of life .
What should others know ?
Patients were also asked : What would you want others to know ? They wanted others to know about the importance of the tailored approach that was offered [ by the clinic ]. This tailored approach translated into a sense of being understood and supported and providing hope to be able to make changes and improve their health .
They felt it was important for developing realistic goals and choosing appropriate interventions . A tailored approach also removed unhelpful deadlines for the length of treatment , or expectations about what would be achieved . Inclusion of carers within the therapy process was considered beneficial .
One person said : ‘ They [ Yorkshire Fatigue Clinic ] have given me lots of useful strategies to help reduce my symptoms and improve my functionality . They tailor my care to my needs , for example breaking up appointments into short blocks with rest breaks in between [ and ] home visits , as I am confined to bed .’
The ‘ physical based ’ approach to intervention was valued , with patients feeling this helped their understanding of how their body works and responds .
The service uses a therapy model with physiological understanding for ME / CFS based in current evidence ( Pemberton et al 2020 ). This was contrasted against respondents ’ experiences with other NHS clinics with a psychiatric or mental health basis or focus .
Another patient said : ‘ The clinic has a much more physical-based approach to treatment , whereas
NHS clinics often focus more on mental health aspects , which I have found decidedly unhelpful for specific symptoms .’
Whilst it was important that ME / CFS was considered a physical illness , impact on mental health was acknowledged – including as a side effect of unhelpful treatment .
When it came to access and long-term input , being visited at home was considered vital , recognising the impact of post-exertional malaise in the condition and the disability of people severely affected by ME / CFS .
Being able to contact the therapist as needed between appointments , having regular input to support and ongoing therapy programme , and that intervention can be offered long-term if needed to support change were also highlighted .
What should we understand when setting up a service ?
Another question asked was : What would be the most important things to understand if setting up a new service for people with severe ME / CFS ?
A tailored approach was again highlighted most frequently when making recommendations for new services for people with
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severe ME / CFS . Individuals % appreciated that their situation may be different from others in relation to problematic symptoms , of people with ME / CFS may be classed as severe , where people are primarily confined to home
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