ME/CFS services in the United Kingdom

Fainbrog said:
I had a private appointment with him earlier this year and whilst he confirmed the prior diagnosis of ME, he also told me that there was a deconditioning theory with ME and that I should be aiming to walk 30 mins, twice a day. I stopped listening at that point and thought, I want my money back. So, whatever the reason, maybe patients in East London/Essex are better off without him and this service.
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I feared this would happen when I booked myself to see him privately earlier last year.

I was very keen on seeing him when I found out he found inflammation in the basal ganglia of a deceased ME patient and assisted in developing the “purple book”. Excited that he was actually still practicing, I booked a private appointment thinking I’d finally get some help with my neuro symptoms…… That was until I decided to have a look around for any patient reviews. To my dismay a few members on PR reported similar experiences as yourself. I recall the most recent post I saw about him dating a few years back was by a member who was distraught about the information he provided to her doctor. Apparently, during the private consultation he seemed on board that she had CFS/ME and it was a debilitating physical condition, but he then told her GP she was likely experiencing depression related symptoms.

I was able to cancel the appointment and have my money refunded luckily but I was really disappointed and couldn’t understand why Dr Shepard was advocating for him to be part of the NICE guidance committee.

I just think it’s strange that the immunology and neurology based specialist services have closed when the new guideline directs primary care to liaise with specialists to manage patients with ME. How are we now supposed to get specialist advice about neurological symptoms? I’ve seen two neurologists within secondary care and without a specialist involved they handle ME/CFS in their own way, which is ME isn’t real so I’m going to try and find another organic cause of the symptoms which sounds like RRMS. When they can’t find RRMS they decide you do have the “functional disorder” called ME.
 
livinglighter said:
It doesn't add up as there are really good reviews about him but the most recent are poor. I found the same with Dr Murphy. Something must of changed their approach, perhaps it was PACE and conflicts of interest.
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Or could it be from Commissioners and contract CCG s telling doctors to stick to a service contract and approach or lose your job or face fitness to practice.....

AC had such a powerful and good reputation at one point. P

erhaps CS and MEA could seek some explanation as it renders the Purple Book useless in terms of medical endorsement. You can't be allowed to say one thing but do another in clinical practice. T

That is unsettling and a tad bordering dishonesty surely?........ or have I misconstrued something here?
 
Suffolkres said:
Or could it be from Commissioners and contract CCG s telling doctors to stick to a service contract and approach or lose your job or face fitness to practice.....
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Sounds more like it!

Suffolkres said:
AC had such a powerful and good reputation at one point. P

erhaps CS and MEA could seek some explanation as it renders the Purple Book useless in terms of medical endorsement. You can't be allowed to say one thing but do another in clinical practice. T

That is unsettling and a tad bordering dishonesty surely?........ or have I misconstrued something here?
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I doubt CS and the MEA are aware. They weren’t aware of Dr Findley.

Maybe we can ask the MEA if they can request him to contribute something for informing the NHS about ME neurology before his departure? Other than that, it sounds like the blind leading the blind going forward.
 
I decided to call a well-known fatigue clinic to ask how I can find out which fatigue clinics dispense medication for patient symptom management. I told them the last clinic I attended did not dispense which was useless as my GP is not a specialist. The person on the call asked what kind of symptoms do I have that I think needs such management.... I said, "OI, disturbed sleep-wake cycle." I was then told my GP should refer me to services for the symptoms, such as a specialist for OI and a sleep clinic for sleeping disorders. They said fatigue clinic is only for patients requiring self-management strategies..... They also said the fatigue clinic can "sometimes" recommend the type of referrals a patient might need.

Talk about information gap! Anyway, If anyone wants to attempt this approach I think it is important they have a supportive GP that will clarify your condition is neurological and not psychosomatic during referrals to secondary care.
 
livinglighter said:
The person on the call asked what kind of symptoms do I have that I think needs such management.... I said, "OI, disturbed sleep-wake cycle." I was then told my GP should refer me to services for the symptoms, such as a specialist for OI and a sleep clinic for sleeping disorders. They said fatigue clinic is only for patients requiring self-management strategies..... They also said the fatigue clinic can "sometimes" recommend the type of referrals a patient might need.
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I know it shouldn’t be the case but this is the way things are in the U.K. I’ve found that in order to get help you have to “jump through hoops”, and figure out who is the right person to see and what for. Even though I’m very poorly, I have to see people separately in order to get help, and they write to the GP to tell them to prescribe meds. So I see someone at the pain clinic, a PoTS centre who diagnosed me with dysautonomia affecting several body systems, someone else for headaches who diagnosed chronic migraine, now see someone else for a neurological condition, another for a rheumatological condition. And most of this was while I had an ME diagnosis. Once I found the right doctors / centres for these, it made a big difference. Since you said you wanted help with OI I’d suggest looking at PoTS U.K. who have a list of doctors who specialise in it. I noticed once you see one doctor, they can refer onwards to other doctors. I was only really able to do all this recently as a lot of it is phone / video calls, which is much more accessible.

I’m mentioning all this as I worry that if patients keep depending on the ME/CFS services specifically to fill the gap.. patients will just keep waiting forever or a very long time without help. Yet a lot of this help already exists - for example the dysautonomia/ PoTs centres are very well established already, and treatment for other symptoms already exists, also on the NHS too. I hope those who have ME can make use of it if needed. It makes me sad that people suffer without symptomatic treatment.

https://www.potsuk.org/specialists/
 
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JemPD said:
yeah... good luck with that.
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I know...... Luckily, my GP has agreed that is all they can say about ME/CFS and Fibromyalgia as it is defined as neurological on SNOMED. I will give it a go as they are supportive of my plight.

JemPD said:
Sorry you were unable to get help @livinglighter the situation is scandalous
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I'll do my best to navigate it and complain where possible.
 
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lunarainbows said:
I know it shouldn’t be the case but this is the way things are in the U.K. I’ve found that in order to get help you have to “jump through hoops”, and figure out who is the right person to see and what for. Even though I’m very poorly, I have to see people separately in order to get help, and they write to the GP to tell them to prescribe meds. So I see someone at the pain clinic, a PoTS centre who diagnosed me with dysautonomia affecting several body systems, someone else for headaches who diagnosed chronic migraine, now see someone else for a neurological condition, another for a rheumatological condition. And most of this was while I had an ME diagnosis. Once I found the right doctors / centres for these, it made a big difference. Since you said you wanted help with OI I’d suggest looking at PoTS U.K. who have a list of doctors who specialise in it. I noticed once you see one doctor, they can refer onwards to other doctors. I was only really able to do all this recently as a lot of it is phone / video calls, which is much more accessible.

I’m mentioning all this as I worry that if patients keep depending on the ME/CFS services specifically to fill the gap.. patients will just keep waiting forever or a very long time without help. Yet a lot of this help already exists - for example the dysautonomia/ PoTs centres are very well established already. I hope those who have ME can make use of it whenever it is possible for them. It makes me sad that people suffer without symptomatic treatment. a lot of the treatment for co morbidities / some symptoms of ME already exists, and on the NHS as well.
https://www.potsuk.org/specialists/
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Thanks, @lunarainbows

You've hit the nail on the head. Some people receive help with symptoms once they have jumped through the correct hoops and are seen by the right people. Unfortunately, that's how it works in the U.K right now.

Can I send you a PM? I'm trying to gather the names of the right people to see to request direct referrals.

I think the changes to the guidelines only help in making it clear ME is a neurological illness and the GP is required to manage symptoms.
 
Post_NICE_survey.jpg Request for feedback on what is happening or being developed in the various CCGs -Alliances across the Country post CG 205 release.

All quick returns gratefully received!
 

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It's a personal request on behalf of those of us co producing a New Service Pathway (and revised Specification) with out local Transformation and Commissioning Team.
We were about to embark on this in 2019 pre Covid and pre New NICE Guideline.
As it happens, the draft in 2019 was pretty much NICE CG205 compliant.
 
Both if the truth be known.
Suffolk have been pretty helpful since 2014.

They are ahead of the game re NICE and co production and patient participation since 2009.

BUT, with Covid and changes and 'Transformation programmes', I feel we need to be vigilant and keep ahead of the curve..

But to be ahead, you need to know where the curve is.
We meet with CCG on the 15th and it would help to have some measure of the national situation (and not have to rely on BACME).
I hope any feeedback will give us patient/carer reps some bargaining power??
 
Can everyone who carried out GET at a UK fatigue clinic share what they were told ME/CFS is?

Part of my intro to GET involved explaining the pathology of ME/CFS and I'd like to know what everyone was told.
My fatigue clinic therapy records have been shared between various health professionals, so I can see the pathology discussion recorded as a unit of GET.

I believe everyone with ME/CFS who has done GET should have received the same information about the disease/disorder.
 
Suffolkres said:
It's a personal request on behalf of those of us co producing a New Service Pathway (and revised Specification) with out local Transformation and Commissioning Team.
We were about to embark on this in 2019 pre Covid and pre New NICE Guideline.
As it happens, the draft in 2019 was pretty much NICE CG205 compliant.
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Can you tell us more about how these teams have worked with you and others on the changes? It will be really interesting to see what the end result is!
 
Haveyoutriedyoga said:
Can you tell us more about how these teams have worked with you and others on the changes? It will be really interesting to see what the end result is!
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How long have you got!!!???


It has taken years and years...... intensively since 2006 when PCT misappropriated money awarded by DoH!! ( national Roll out of ME Services )

Each meeting has meant 100-120 mile round trip. .. a real challenge for ME patients some SA's.

In 2005 we triggered the Gibson Parliamentary Report.

Initially it was to reinstate the ME Service we had had for 25 years up to 2006 when bean counters and other officials cut it!

Then 2007 Kev and Doug challenged the NICE Guidance in Court.

Inequality and unmet need referred to Health Overview and Scrutiny and it's been on their books ever since.

In 2009 we decided to create an audit trail and here is the link!
http://nandsme.blogspot.com/p/homepage.html

Conducted a patient survey-
http://nandsme.blogspot.com/p/patient-survey.html

(2010 the specialist community service was 'divested'.. consigned to a CIC 'Privitised" arrangement....)

We were on track when Government changed 2010 and restructured of NHS set back proceedings ; though the new Service Spec was signed off in 2012; then awaiting the 2014 Health and Social care Act dust to settle....

2016 saw " Sustainability and Transformation work allow heels to be dragged...

2018 Suffolk met 'significant Inequality and unmet need' with an ancillary service for severe patients with Dr Luis Nacul.

That had to close in 2019 and then we have had to wait for NICE, Covid Alliance reconfiguration.

We are resuming work with new Alliance.
Wish us luck!
 
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