Action For ME Healthcare Services

Thanks. I know where she is I just wondered why she isn’t with action for ME anymore?
 
Curious if anyone has seen Dr. Barham through AfME since she joined?

I've got a follow-up appointment on Tuesday (saw Dr. Worthley and Dr. Taylor previously in the ME Trust days), so can report back if it helps folks.
 
Fainbrog said:
Curious if anyone has seen Dr. Barham through AfME since she joined?

I've got a follow-up appointment on Tuesday (saw Dr. Worthley and Dr. Taylor previously in the ME Trust days), so can report back if it helps folks.
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I've had a video appointment with Dr Barham. She was excellent, good understanding of M.E., didn't rush me, extremely thorough, comprehensive report.

AfME's admin is dire though, slow, unresponsive and unhelpful. Don't expect anything to happen in a hurry.
 
Daisy said:
I've had a video appointment with Dr Barham. She was excellent, good understanding of M.E., didn't rush me, extremely thorough, comprehensive report.

AfME's admin is dire though, slow, unresponsive and unhelpful. Don't expect anything to happen in a hurry.
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Thanks, good to hear that she knows her stuff.

The reports I got previously (MET) were excellent, very thorough, so, is good to hear that they've kept that up (the medical side of AfME is basically MET led from what I recall, so, hopefully they will be able to maintain the quality that many of us got accustomed to). I've only got 30 mins with her, so will only get so much depth this time round, but I'm good with that.

I've been waiting about 18 months for the follow-up appointment, so if it takes them a while to send me an invoice, I'll survive :laugh:.

Will be interesting to see what frequency of appointments they offer going forwards..
 
Fainbrog said:
Thanks, good to hear that she knows her stuff.

The reports I got previously (MET) were excellent, very thorough, so, is good to hear that they've kept that up (the medical side of AfME is basically MET led from what I recall, so, hopefully they will be able to maintain the quality that many of us got accustomed to). I've only got 30 mins with her, so will only get so much depth this time round, but I'm good with that.

I've been waiting about 18 months for the follow-up appointment, so if it takes them a while to send me an invoice, I'll survive :laugh:.

Will be interesting to see what frequency of appointments they offer going forwards..
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The invoices seem to be sent on a monthly cycle, so you might get it quickly (or not) depending on the date of your appointment.

Sorry not to be clear, I meant AfME are slow to respond to messages and to send out reports. It's such a shame as the MET were great, and they have been swallowed up by AfME, who have a totally different ethos.
 
Just updating on this. It's good to be able to echo the experience that @Daisy had of Dr. Barham.

Had my appointment a couple of weeks back now and she was very knowledgeable, made clear that time was not a pressure (despite all the emails re the booking saying 30 mins MAX).

Mine was a follow-on appointment from the previous session with Dr. Taylor, but we spent time going over what I wanted from the time and then discussed what I needed to cover. She made a number of practical suggestions, reassured me that I was doing ok with my management approach and had produced a letter to cover that and positioning it as I needed. Spent best part of an hour with her on Zoom, which was somewhat ruinous, but worthwhile.

It's good to see this part of the ME Trust being able to carry on the great work it was doing as part of AfME. And, in the absence of a local ME service (mine appears to have closed fairly recently - without any notification to me that the referral will have lapsed), I don't begrudge an £80 fee for the time - but, acknowledge that not everyone will be able to afford this.

I don't always post positive things on here, but, for once I can do so and hope it helps other who may have been considering seeking an appointment with AfME. Would recommend, based on my experience.
 
Annoyingly, I've just heard from AfME that Dr. Barham is 'taking a break' in the new year. Trying to find out what that means in reality.

Am gutted, having had two really good appointments with her, I'll likely be back to square one with a new doctor.
 
dratalanta said:
If AfME expect patients to get behind the "holistic Healthcare Services" they're touting in Shaping Our Future Together, then the ME Trust legacy services will need thorough review.

From that issue of InterAction magazine:
"Action for M.E. has now completed its merger with The ME Trust, offering Healthcare Services [including]... Physiotherapy. Our physiotherapist’s expertise and advice helps to improve quality of life, working gently, step by step towards increasing levels of activity and function... Coming up with a plan gives the patient a sense of control and hope" [my bolding].

The online info at https://www.actionforme.org.uk/get-support-now/our-healthcare-services/physiotherapy/ has all that plus the patient-blaming phrase "boom and bust", and some awful stuff about "addressing the damage that may have occurred due to spending a long time in bed or indoors".

AfME will have trouble promoting the NICE guideline nationally if they aren't implementing it in their own services. AfME's approach of "working gently, step by step, towards increasing levels of activity" does not seem to me to be in line with the guideline requirement that in "a personalised physical activity or exercise programme, agree a programme with them that involves...making flexible adjustments to their physical activity (up or down as needed)".

I'm honestly shocked after all the solid work AfME has done recently to see these old canards about planning one's way out of illness by "working gently". No matter how "gently" it is done, the premise that it is possible to exert oneself out of this illness is false and can be harmful. "Step by step" implies a single direction of travel, and that is where the harm is done.

Have @PhysiosforME been consulted about AfME's approach?
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dratalanta said:
@PhysiosforME Sorry about the delayed response - I'm only strong enough to post very infrequently.

It's interesting to hear that AfME haven't been in touch with Physios For ME about AfME's physiotherapy offerings.

I wonder how the issue of AfME's physios offering a quasi-GET approach of "working gently, step by step towards increasing levels of activity" can be raised constructively and effectively?

We wouldn't expect a Macmillan Cancer Centre (strapline: "we won’t settle for anything other than the best possible support for people with cancer") to offer outdated and potentially harmful treatment advice. Desperate patients who go to the AfME for physiotherapy - a service which the patient has to pay for - also deserve the best possible advice and support, developed in consultation with the relevant experts.

Besides, AfME is positioning itself as a leading advocate for implementation of the NICE guidelines. AfME's services should be a role model for the NHS, not reproducing the NHS's problems.
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If the doctors associated don’t prescribe (many who are severe, in contrast to what may be accepted here, do want to access to off label meds) and the waiting lists are very long and it’s all remote & it has capacity to cater for a very small number even if all who want it can afford it, what the ME trust was trying to do alone and part of afme, without there being accompanying campaigning on fitting NHS services, is just a small gesture. I myself wouldn’t see any point in a Dr that can’t prescribe given how unhelpful many GPs can be even if directed. I may consult the physio for my contractures as my local cfs service refuses their physio to do anything but fatigue management but without home visits it’s of uncertain value.
 
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