Trafford Tired of Explaining Experiences of Services for ME CFS Patients in Trafford and Greater Manchester Apri

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Summary of report content

Healthwatch Trafford created a survey to find out the experiences of patients in Trafford that have Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) following complaints and concerns that had been reported to them.

They created a survey and distributed it via social media, email, ME/CFS charities and paper forms. In total there were more than 1000 responses, with 915 from the United Kingdom including 47 from Trafford specifically, and 147 from Greater Manchester.

The report gives seven recommendations in the following areas:

1. General Practitioners require thorough training on ME/CFS

2. Diagnosis times to be improved

3. Information on ME/CFS to be improved and standardised

4. Clear mapping of services

5. Improvements in the appointments offered

6. Help patients understand how to access their medical records

7. Improved training and facilities in hospitals for inpatient stays

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General details

Local Healthwatch
Healthwatch Trafford
Publication date
Date evidence capture began
Date evidence capture finished
Type of report
Report
Key themes
Access to services
Triage and admissions
Booking appointments
Building, Decor and Facilities, including health and safety
Communication with patients; treatment explanation; verbal advice
Complaints
Consent, choice, user involvement and being listened to
Follow-on treatment and continuity of care
Diagnosis
Health inequality
Written information, guidance and publicity
Integration of services and communication between professionals
Lifestyle and wellbeing; wider determinants of health
Medication, prescriptions and dispensing
Administration (records, letters, results)
Caring, kindness, respect and dignity
Other
Staffing - levels and training
Quality of treatment
Referrals
Service organisation, delivery, change and closure
Waiting for appointments or treatment; waiting lists for treatment

Methodology and approach

Was the work undertaken in partnership with another organisation?
No
Primary research method used
Survey
If an Enter and View methodology was applied, was the visit announced or unannounced?
N/A

Details of health and care services included in the report

Details of health and care services included in the report
Diagnostic centre/hub
General Practice (GP)
Other
Inpatient care/General inpatients
Pain management
Physiotherapy
Hospital-based psychiatric care
Community Mental Health Team (CMHT) and specialist MH services
Adult social care, including care packages and social workers
Emergency department (inc A&E)

Details of people who shared their views

Number of people who shared their views
915
Age group
All
Gender
All
Does this report feature carers?
Yes
Seldom heard groups
People on low incomes
People with limited family or social networks
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