NHS services for people with ME/CFS in Norfolk and Suffolk are being re-designed. NHS Gt Yarmouth & Waveney has not carried out any patient satisfaction surveys regarding the current ME/CFS Service. Patient Representatives wanted to find out in detail what people think of the current ME/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/CFS support groups for taking part in this initiative.
The NHS wants 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/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/CFS in Norfolk and Suffolk
Respondents told us that they want a biomedical consultant led service which cares for people with ME/CFS of all ages and all levels of severity and complexity. The service should provide regular ongoing care, and access to aids and equipment. Treatment and management should include medication and advice regarding self management such as pacing. Graded Exercise Therapy and Cognitive Behavioural Therapy should not be offered as respondents found these interventions the least helpful and most harmful. It is important to provide information regarding potential benefits and adverse effects of interventions so that patients can make informed choices regarding their care.
Patient Survey Highlights
We urge you to look more closely at the survey results in full if you are able to [click here to see full survey report] as it is an important and groundbreaking document in the campaign for appropriate treatment and healthcare for ME sufferers. It will bring the patients' voice to the table in no uncertain terms in any future negotiation with the NHS regarding the re-design of local service provision for ME/CFS. We owe a debt of great thanks to the patient rep team that have worked so hard collating all of the survey results and producing this powerful and fascinating document.
In brief summary, 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/CFS and prompt referral
- Support for people with ME/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
If you have any queries please email us: survey.mecfs @yahoo.co.uk
