ME CFS Patient experience report
Download (PDF 1.47 MB)Summary of report content
Following the creation of the 'Tired of explaining' : ME/CFS Report by Healthwatch Trafford, Healthwatch Lancashire decided to utilise the local intelligence and links they have with patients in Lancashire to contribute to the findings, in order to express their needs at a national level.
In total, 48 people shared their experiences (27 people from the original Healthwatch Trafford survey and a further 21 from the Healthwatch Lancashire campaign). Findings of the report included:
> Just over half (53%) of people said they have received information on living with ME/CFS from the department where they received their diagnosis. A quarter of people said they had never received information from the NHS on how to live with their condition.
> Over half (53%) of people said their GP is supportive but not knowledgeable about their condition. Nearly a quarter (24%) of people said their GP is neither knowledgeable nor supportive.
>Around a quarter of people (26%) said they would trust their GP to provide them with information on their condition. The large majority (74%) said they would not trust their GP or were unsure whether they would.
The report does not include any particular recommendations, but does include the local Clinical Commissioning Group (CCG) plans for a new service for ME/CFS.