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!

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.

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]

All Party Parliamentary Group on ME
In March 2010 part of our survey was included in the All-Party Parliamentary Group on ME 'Inquiry into NHS Service Provision for ME/CFS' (p6).

The APPG commented on page 8 of their report:
'While the APPG recognises that it is impossible for all treatments in any disease area to be side-effect free, if CBT and GET were licensed medication, this number of patients claiming devastating side effects would undoubtedly have led to a review by NICE. The same standards should apply to CBT and GET.'
    It is vital to provide information regarding potential benefits and adverse effects of interventions so that patients can make informed choices regarding their care.

    ME Association Survey - May 2010
    A total of 3,494 people answered the questions on-line. Another 723 completed the paper questionnaire.  The results of the survey 'Managing my ME' can be found here

    Action for ME Survey - May 2008
    A survey of over 2,760 people with ME was carried out focusing on their health and welfare.  To read the report please click here

    Survey - People with Severe ME/CFS
    In 2007 a survey was undertaken in conjunction with the 25% Group to gather the views and experiences of those in our area who are severely affected by ME/CFS.  For a copy of the report please click here


    This website has been set up by Patients and Carers to keep you in touch with the development of ME/CFS Services in Norfolk and Suffolk
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