ME Report by Healthwatch Trafford

[lynmynott]

Healthwatch Trafford have issued the following Press Release today:

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 revealing new report released today by Healthwatch Trafford shows the findings of a survey of people with Myalgic Encephalomyelitis(ME), also known as Chronic Fatigue Syndrome(CFS), to find out what their experience of the NHS was 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 included:

•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 2 years for a diagnosis, with a quarter in Greater Manchester waiting more than 5 years

•91.9% of respondents in Greater Manchester are unable to work or study because of their condition

•77% have had ME/CFS for 5 years or more, with 34.7% having had it for 15+

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”

For more information contact:

Andrew Latham

Chief Officer

[e-mail]

or

Adam Webb

Communication and Information Officer

[e-mail]

0300 999 0303

You can see the Summary Report here: healthwatchtrafford.co.uk/w...

You can see the Full Report here: healthwatchtrafford.co.uk/w...

[Marz]

So if only they have the TSH tested and told they are *normal* - what hope do they have in finding wellness ....

[shaws Administrator in reply to Marz]

Definitely. Thousands must suffer daily due to the ignorance of doctors and professionals.

[Karenmorris]

healthwatchtrafford.co.uk/a...

Comments from main contributor and ME patient:

"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'; 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."

Karen Morris

[Raventhorpe]

So it seems we are not the only ones who are not getting diagnosed and correct treatments, it's a disgrace.

[MULLIONAIRE]

Thank you for that useful report, Lyn. I will forward it on to my contact at the Parliamentary and Health Service Ombudsman office. Hoping to provide him with as much knowledge as possible in readiness for him attending a meeting with Forward-ME that the Countess of Mar invited him to in the summer.

[mrsm49]

One endo tried to diagnose me with ME but i wasnt having it as she hadnt even tested t3 or d3 at that point. Supplementing b12 myself has helped alot of my symptoms but another endo has now said i should hve a trial of d3 or t3 . Getting either fm gp has proved difficult so im now waiting for a referral to new endo. Such alot of time wasting, im now 2 1/2 yrs post tt and still trying to get sorted. At least taking b12 means brain fog mainly gone so its easier to fight my corner 😉