http://nandsme.blogspot.com/p/patient-survey.html
Survey
Evaluated by leading ME researchers and doctors;
Dr Pheby, Dr.
Derek F. H. Pheby, BSc, MB, BS, LLM, MPhil, FFPH, is a Visiting Professor of Epidemiology, Buckinghamshire New University, Wycombe, England, United Kingdom. He served as the Project Coordinator of the
National ME Observatory, a collaborative project involving three universities, aiming to fill gaps in research knowledge.
[1] He was a former member of the Chief Medical Officer’s Working Group on CFS/ME and former trustee of
Action for ME.
[
Dr. Nacul and Lacerda from LSHTM BioBank and
Professor Bernie Carter
Professor of Children’s Nursing
PhD, PGCE, PGCE, BSc, RSCN, SRN
Faculty of Health and Social Care
H217a, FOHSC Building
bernie.carter@edgehill.ac.uk
01695 657771
2009 Patient Survey Report
This report is lengthy, but it does justice to the efforts that you made in completing the surveys. This couldn't have happened without you!
See the full survey report [pdf]
A results summary can be found on page 5 with key messages on page 6 and recommendations on page 7. Page 9 onwards looks at the results in detail and features many comments from individual respondents.
Summary
NHS services for people with ME and CFS in Norfolk and Suffolk are being re-designed. NHS Gt Yarmouth & Waveney had not carried out any patient satisfaction surveys regarding the current ME and CFS Service. Patient Representatives wanted to find out in detail what people think of the current ME and CFS Service and what they want and don’t want from the new service. We therefore launched the 2009 Patient Survey in January 2009. The NHS was invited to participate, but declined.
Patient and Carer Representatives would like to thank everyone who participated in our 2009 Patient Survey. We would also like to thank all local ME and CFS support groups for taking part in this initiative.
Great Yarmouth and Waveney NHS wanted to provide a service based on the NICE Guidelines. This is despite the fact that the Guidelines have been condemned as ‘unfit for purpose’ by virtually all patient groups and charities. The Norfolk and Suffolk ME and CFS Service 2009 Patient Survey provides detailed evidence that:
- The current level of service provision is inadequate
- A service based on the NICE Guidelines will not meet the needs of people with ME and CFS in Norfolk and Suffolk
The survey has demonstrated that respondents want:
- A biomedical consultant led service
- A team of healthcare professionals who have the skills and expertise to care for people of all ages, of all levels of severity and complexity
- Ongoing care for all with reviews between 1 month and 6 months depending on severity and need
- Treatment and management to consist of:
- Self management, e.g. pacing, activity management
- Pharmacological treatment
- Clinics closer to home, the option to self refer and a prescribing service
- Support for patients and carers including liaison with employers, education services, voluntary services, DWP and JCP
- Information to facilitate informed choice regarding treatment options
- Access to aids and equipment
- Onward referral to other services e.g. pain clinic
- GP training to ensure prompt recognition of ME and CFS and prompt referral
- Support for people with ME and CFS
Respondents found the most helpful and least harmful interventions were:
- Pacing, rest, relaxation and meditation
- Medication for symptoms, massage and dietary changes are also worth considering
Respondents found the least helpful and most harmful interventions were:
- Graded Exercise Therapy
- Cognitive Behavioural Therapy
Respondents were significantly more satisfied with the service provided by Occupational/Physiotherapists than with GP’s with a Special Interest in ME/CFS.
Click here to view the full 2009 Patient Survey [pdf]
