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.”
Adam added:
“We are extremely grateful for the assistance of Manchester Metropolitan University in analysing the survey results”
I would argue that patients with a longstanding chronic illness, such as ME/cfs, who make the effort to become knowledgeable about their condition, ought to be given much more opportunity (and power) to influence their own care.
The HealthWatch Trafford survey demonstrates that patients suffering with a chronic disease like ME/cfs, who want to be pro-active in the management of their condition, have no alternative than to become their own expert, because GPs have neither the time nor the compulsion to be so.
Thanks to the ready access to information which is now made possible via the internet, it is frequently the case that patients are more knowledgeable than their GPs, and the NHS Consultants to whom they are subsequently referred. The results of the HealthWatch survey are therefore not really that surprising.
In the past couple of days, Margaret Williams has sent a letter to Prof. Mark Baker – Director of Guideline Development at NICE, which serves to highlight NICE’s failure to implement their own 2001 initiative – “ The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century” http://www.margaretwilliams.me/2017/open-memo-to-nice.pdf
Therefore, if NICE had done what it said it was going to do way back in 2001, we wouldn’t now be seeing such patient dissatisfaction as that which is now reflected in the Trafford survey.
Very few PWME regard in-patient facilities as satisfactory. Without doubt, out-patient provision and GPs’ waiting rooms are also more akin to torture rooms than places for people who are very unwell. For us, the NHS is worse than useless.
Karen Morris, who campaigned consistently for Healthwatch Trafford to undertake and then publish this survey, writes:
“I am extremely grateful for Healthwatch Trafford agreeing to do a survey, and for it to include whole of England (now UK). I am also grateful for the ongoing support from organisations such as The Patient’s Association, Thyroid UK, 25% ME Group, Dr Speight (Tymes Trust), Invest in ME Research and the ME Association.
I was very impressed to see Healthwatch Trafford recently set up a similar survey for Fibromyalgia, which is a condition that often overlaps ME (more controversially called CFS).
There have of course been some problems with the ME (CFS) survey: the time delay of two years, the use of two psychologists for a Neurological condition, and the fact that it may be used for academic research by these psychologists; the title ‘Tired of Explaining’ ME is not tiredness, but debilitating fatigue with other symptoms e.g. PEM, frequent prolonged infections (Canadian Consensus); only forwarding information upon request to other local HW and CCGs.
However, from the start both myself and Healthwatch have been surrounded by an overwhelming amount of problems and politics which I did not expect. This has taken over my life for the past two years, having an impact on my own health and support.
This includes people trying to speak on behalf of others, the under representation of severe patients and children, selected ‘reps’ (also who I feel may not fit the criteria of ME or typical demographic e.g. gender and age), secret meetings, lack of information and transparency, copycatting and general disrespect for the individual rights of patients under the NHS Constitution.
It has also highlighted general problems with the post-Francis Report system for all patients (not just those with ME). These include the process of giving feedback and it being taken seriously; The regulation and accountability of the NHS at every level; Complaints being ignored and/or denied; Being able to speak up politely with evidence, without the risk of being viewed and treated negatively and feeling ‘blacklisted’ as a patient; Local Government; and the regulation of the third sector, amongst other problems.
I have sent my concerns and evidence to the media and government in the hope that this will one day change as patient’s lives continue to be at risk, including children. Lessons have not been fully learnt from Mid-Staffordshire and subsequent events.
That said, I believe that patients with ME (and other conditions) should keep giving polite feedback and evidence direct to watchdogs and similar organisations if we want positive change to happen. We are a very large group of people with a valuable voice. Thank you to everyone who participated.
Well done Karen Morris. I can’t imagine the amount of work this must have taken. I think it will take me some time to even get around to reading it. I am sure it will become a valued resource.
Hear, hear, Firestormm. Congratulations and sincere thanks to Karen Morris and all at Healthwatch Manchester for taking on – and completing – an enormous task.