More than half of people in the UK with ME/CFS said they wouldn’t trust their GP to give them information on their condition, a new report claims today.
Healthwatch Trafford have released the findings of a major survey of people with ME/CFS to find out what their experiences of the NHS were like.
The report Tired of explaining : Experiences of services for ME/CFS patients in Trafford and Greater Manchester highlights the issues that people with the condition are finding and how that impacts upon them.
KEY FINDINGS INCLUDE
• More than a third of people in the UK diagnosed with ME/CFS get no information from the NHS (and 40% that did receive some information said it wasn’t useful)
• Less than 10% of respondents in Greater Manchester felt inpatient hospital facilities were suitable for them
• More than half in Greater Manchester said they wouldn’t trust their GP to provide them with information about the condition
• 37.5% of people across the UK waited more than two years for a diagnosis, with a quarter in Greater Manchester waiting more than five years
• 91.9% of respondents in Greater Manchester are unable to work or study because of their condition
• 77% have had ME/CFS for five years or more, with 34.7% having had it for 1over 15 years,
The survey had more than a thousand responses and attracted responses from people around the UK. Many people with the condition observe they are experiencing poor treatment, often making their condition worse.
ME/CFS as a condition has a number of issues that make its effective treatment very difficult. Chief amongst these is the fact that it isn’t really understood, and so many medical professionals and professional bodies cannot agree on what it is, its cause and what to do about it. This has lead to huge variation in its treatment, with some medical professionals treating it purely as a psychological problem, meaning the physical aspects are not addressed and vice versa.
A core issue is that many feel their GPs knowledge of the condition and treatment options is not adequate and often their attitudes towards it have been a major problem, with levels of trust in their GP amongst those with ME/CFS being low.
ADAM WEBB, the report’s author and Communications and Information officer for Healthwatch Trafford, said:
“We created this survey after hearing reports of people with the condition receiving poor treatment and aimed it at our local area. We didn’t expect there to be such a large response to it, but the strength of feeling expressed by the respondents shows there is a real issue with their treatment across the whole of the UK.
“Addressing the recommendations made in the report would go a long way to improve the lives and treatment of a large number of people who have felt misunderstood for so long.”
ME/CFS is thought to affects around 250,000 people in the UK and around 85% of respondents were women ≠ largely reflecting the general incidence of the condition (four females to every one male).
ANDREW LATHAM, Chief Officer of Healthwatch Trafford said:
“This report highlights some of the very real issues that people with ME/CFS face on a daily basis, from initial diagnosis through to living with the condition for many years. The report shows that there are multiple issues to be addressed and that whilst our initial focus is on patients within Trafford, the high response rate to our survey shows that these are nationwide problems that cannot not be ignored.
“Healthwatch Trafford is committed to making sure that the issues people have told us about get heard by the people with the power to act on the recommendations made, both locally and nationally. We will share this data with providers and commissioners in Trafford and urge our colleagues in local Healthwatch throughout Greater Manchester and the rest of England to do the same. We hope that this can have a positive impact on how patients with ME/CFS access services and the treatment that they receive.”
“We are extremely grateful for the assistance of Manchester Metropolitan University in analysing the survey results”