ME CFS Patient experience report

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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.

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General details

Report title 
ME CFS Patient experience report
Local Healthwatch 
Healthwatch Lancashire
Date of publication 
Tuesday, 13 June, 2017
Type of report 
Key themes 
Booking appointments
Building and facilities
Cleanliness hygiene and infection control
Communication between staff and patients
Complaints procedure
Consent to care and treatment
Continuity of care
Food and nutrition
Health and safety
Health inequalities
Information providing
Lifestyle and wellbeing
Quality of appointment
Quality of care
Quality of staffing
Quality of treatment
Service closure
Service delivery organisation and staffing
Staff attitudes
Staff levels
Staff training
Waiting times and lists for treatment
Healthwatch reference number 

Methodology and approach

Was the work undertaken at the request of another organisation? 
Not known
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? 

Details of health and care services included in the report

Primary care services 
Diagnostic and/or screening service - single handed sessional providers
GP practice
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)

Details about conditions and diseases

Conditions or diseases 
Chronic fatigue syndrome
Musculosceletal conditions
Neurological conditions
Types of disabilities 
Stamina or breathing or fatigue

Details of people who shared their views

Number of people who shared their views 
Age group 
Not known
Not known
Sexual orientation 
Not known
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? 
Not known
Does the information include other people's views? 
Not known
What was the main sentiment of the people who shared their views? 

Outcomes and impact

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? 
Not known
What type of impact was determined? 
Implied Impact
Network related impact
Tangible Impact (cost related)
Tangible impact (not cost related)

Network Impact
Relationships that exist locally, regionally, nationally have benefited from the work undertaken in the report
Implied Impact
Where it is implied that change may occur in the future as a result of Healthwatch work. This can be implied in a provider  response, press release or other source. Implied impact can become tangible impact once change has occurred.
Tangible Impact
There is evidence of change that can be directly attributed to Healthwatch work undertaken in the report.