We routinely ask new patients attending for their assessment appointment what they hope that we can help with. We thought that it would be helpful for our staff team to look in more detail at the different aims that people have, so that we can make sure that we are able to offer people the support that they want. We routinely collect this information, so we were able to analyse these aims into different themes. This kind of data collection and analysis is known as a “service evaluation” which is an important part of developing an NHS Service. In doing this analysis, the information was anonymised and de-identified which means that it cannot be traced back to any individual.
We thought that it would be helpful to share this thematic analysis here on our website, so that patients coming to the service can find out more about what other patients wanted. We welcome this approach to setting an agenda for appointments, which supports self-management and shared decision making.
To confirm the diagnosis
This was a common aim, which we noted was often linked with wanting an explanation of the symptoms.
To learn how to manage the condition
This was the most common aim, with a clear focus on wanting support with developing self-management coping strategies.
Help with symptoms
This was a separate theme from self-management and was linked with another theme which was to have advice regarding medication.
Some people wanted better quality sleep, others wanted more sleep, and others still wanted to sleep less. This makes sense to us, as some people have insomnia, others sleep for longer than they want to, and disturbed and/or unrefreshing sleep is a key element of the condition.
Work and education
This was a common theme, with many people asking for support in sustaining work or education or returning to some form of employment. Within this theme, we included aims to achieve a better work/life balance.
A common goal included support with physical activity and exercise. Specific physical activities such as dog walking, horse riding, walking with grandchildren, and Pilates were mentioned as well as general aims to build strength and improve physical fitness.
Support with well-being and mental health
A number of people wanted help with managing negative emotions, which had become a problem as a result of having ME/CFS, including anxiety and low mood.
This theme included increasing social activity and family life.
Increasing understanding of the condition for friends and family
This was less frequently stated as an aim, but it is an important issue which is frequently raised by patients during their care.