Summary of report contentFollowing 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.
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ME CFS Patient experience report
Date of publication
Tuesday, 13 June, 2017
Type of report
Building and facilities
Cleanliness hygiene and infection control
Communication between staff and patients
Consent to care and treatment
Continuity of care
Food and nutrition
Health and safety
Lifestyle and wellbeing
Quality of appointment
Quality of care
Quality of staffing
Quality of treatment
Service delivery organisation and staffing
Waiting times and lists for treatment
Healthwatch reference number
Was the work undertaken at the request of another organisation?
What type of organisation requested the work
Other local Healthwatch
If this work has been done in partnership, who is the partner?
Healthwatch Trafford, ME/CFS support groups
Primary research method used
How was the information collected?
If an Enter and View methodology was applied, was the visit announced or unannounced?
Primary care services
Diagnostic and/or screening service - single handed sessional providers
Secondary care services
Acute services with overnight beds
Acute services without overnight beds / listed acute services with or without overnight beds
Pain management clinics
Psychiatry/mental health (hospital services)
Conditions or diseases
Chronic fatigue syndrome
Types of disabilities
Stamina or breathing or fatigue
Number of people who shared their views
Other population characteristics
People who are long-term unemployed
Does the information include public's views?
Does the information include carer's, friend's or relative's views?
Does the information include staff's views?
Does the information include other people's views?
What was the main sentiment of the people who shared their views?
Were recommendations made by local Healthwatch in the report?
Does the information contain a response from a provider?
Yes action has been taken or promised
Is there evidence of impact in the report?
Is there evidence of impact external to the report?
What type of impact was determined?
Network related impact
Tangible Impact (cost related)
Tangible impact (not cost related)