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Looking for Ideas to Improve Primary Care of ME/CFS - Health Foundation Project

justy

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5,524
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U.K
I think the biggest issue for PWME in the UK is ACCESS to their GP - this has been an ongoing issue for me for 7 years now. I live in a rural area, cant drive anymore and the surgery is 4 miles away. It is very busy being the only local rural surgery. I cant practically sit for over an hour waiting, even if I do get there. I catch all sorts of nasty illnesses from the sick people in the room waiting.

I cant easily get an apt with the Dr who knows me and my case - this is a big problem if you have complex health issues.

There is no 'joined up thinking' each of my health problems is seen separately, rather than as a whole condition. This may because of the inability for the GP to read all your notes before you see them (which may be copious) I presume they have a thing that comes up with the salient points, but im not really sure about this. Something that is automated that comes up that gives a brief overview of how they are affected by the ME and any meds, treatments, co morbid conditions would be good.

I also think PWME should be regularly reviewed by the GP practice - this could be offered at home. This would mean the GP was aware of the nature of the illness, all the comorbidities (when you've been severely ill a long time you start gaining a fair few of these, which are often part of ME, but not treated as such by the GP).

Sorry a bit rambling, but some basic thoughts.
 

Keith Geraghty

Senior Member
Messages
491
thank you for the latest replies:

the assessment tool for GPs may be problematic - as you may know the IAPT is pushing for GPs to refer patients with MUS to clinics led by liason psychiatry to offer CBT and GET. GP training manuals also push the biopsychosocial approach and link in with the IAPT material. Asking GPs to run a checklist that impedes this prescribed process may be blocked, plus youd need a top down approach to get GPs to do this - Id say unlikely to impossible.

I think its important to get an idea that has a chance of being implemented. It doesnt have to be from the provider side - for instance if ME patients had a booklet about GP consultations and were able to bring it to their practice and ask for certain things eg quiet area based on recommendations of the 'Manchester ME/CFS GP Patient Needs Guide' this could arm and empower patients - with no need to change NHS guidelines

The idea about the self-rating scale is also patient led - for instance patients might benefit for a simple scale that helps them assess their current level of physical function. Some scales are complex and are used by academics - however there may be a need to develop an appropriate patient self scale tool that is easy to use

For example: 1 - 10
10 best health possible, not time in bed, do full employment, socialise
5 able to spend a few hours out of bed and do very short walk eg 10 metres
1 worst health possible - unable to leave bed, all food brought by another or given via tube
------- something along these lines but validated and tested with patients perhaps calling it the Manchester ME/CFS Physical Function Self-Rating Scale

the scale would be based around best evidence of a number of key factors eg time spent on feet, symptoms and so on

research: as you can see even coming up with an idea that is desirbale and workable is not easy
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
The idea about the self-rating scale is also patient led - for instance patients might benefit for a simple scale that helps them assess their current level of physical function. Some scales are complex and are used by academics - however there may be a need to develop an appropriate patient self scale tool that is easy to use

For example: 1 - 10
10 best health possible, not time in bed, do full employment, socialise
5 able to spend a few hours out of bed and do very short walk eg 10 metres
1 worst health possible - unable to leave bed, all food brought by another or given via tube
------- something along these lines but validated and tested with patients perhaps calling it the Manchester ME/CFS Physical Function Self-Rating Scale

the scale would be based around best evidence of a number of key factors eg time spent on feet, symptoms and so on
Could the scale used on PR be used as a starting place:

0 - Bedridden constantly
1 - Mostly bedridden
2 - leave house once a week, concentrate 1/hour a day
3 - leave house several times/week, two hours work/activity at home a day
4 - 3 to 4 hours of work/activity a day
5 - four to five hours/activity a day
6 - six to seven hours/activity a day
7 - able to work full-time but with difficulty
8 - near-normal activity level but still symptomatic
9 - normal activity level, mild symptoms
10- fully recovered
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
with no need to change NHS guidelines

As you'll know, charities are pressuring NICE to review their ME/CFS guidelines (currently on the "static" list). Can you see a way of doing a project that could somehow get some of the obvious things we need (such as asking every patient questions to identify OI and explaining how to refer for tests, as standard practice) into those guidelines, or into guidance for the GP as some sort of supplement to the guidelines?

My suggestion might be a bit off the mark (I'm not quite sure of the limitations, either in the project or the NHS system) - but if the goal is to get ME/CFS patients tested for OI as standard, what project would enable that to happen? If it's possible at all within your particular remit?

This is not a minor issue. I've only just been diagnosed with OI despite being ill for decades and since I self-diagnosed with OI five years ago, it's taken me that long and four consultants to finally get the diagnosis. I had to bring my symptoms to my GP's attention and provide the diagnosis and then tell him (incorrectly at first) where to send me for testing...

Actually, maybe that could be a project. My GP didn't have a clue where to send me for a TTT and it took me years to find out because google didn't give me good info. Every time I need something even slightly fancy doing, my GP asks me who I want referring to, and I'm amazed he thinks that I should know! I don't know what every doctor in the NHS specialises in or where to get unusual tests - but neither do any of the doctors in my surgery, apparently, and if this is a universal problem, it needs sorting. GPs should have a database where they type in "tilt table test" or "orthostatic intolerance" and get a list of who does those things and where they are.

Because PWME are being managed by GPs but need specialist services, this is a real break in the chain - and fixing it could fix the same problem for a lot of other patients.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I think its important to get an idea that has a chance of being implemented. It doesnt have to be from the provider side - for instance if ME patients had a booklet about GP consultations and were able to bring it to their practice and ask for certain things eg quiet area based on recommendations of the 'Manchester ME/CFS GP Patient Needs Guide' this could arm and empower patients - with no need to change NHS guidelines

I think this is a terrific idea but I wonder if there's a way of going one further and not just relying on the patient to take the booklet to the GP but the GP to be made aware of the booklet/info and that he/she should be telling the patient about all the things he/she can do to make it possible to access care (home visits, home phlebotomy, side-room with a couch rather than being in the waiting room, use of email, Skype, pharmacy home-delivery of meds, etc.).

It took me years to find out some of this stuff and I found out via other patients or by asking my GP if we could do things like this - my GP never thought to suggest it, probably because he doesn't seem to really get how disabled I am (invisible illness), even though I've spelled it all out for him.

In other words, should this only be a project about a booklet or should it include something about the system of roll-out? We can't assume that patient will ever hear about the booklet.

I really do think this is a fantastic idea, though - it would help drive home to GPs exactly how disabling this condition is and would help patients immediately to better access care.

I'd like to see it go through a process of being assessed and commented on by patients before it's rolled out, and perhaps approved by the charities - it would be great to get their backing in helping disseminate the info to patients.
 

justy

Donate Advocate Demonstrate
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5,524
Location
U.K
as you may know the IAPT is pushing for GPs to refer patients with MUS to clinics led by liason psychiatry

There is a difference between ME and MUS (well it ,ay be that MUS does not exist, but that is not my point) We do not have MUS, we have M.E/CFS.

The idea about the self-rating scale is also patient led - for instance patients might benefit for a simple scale that helps them assess their current level of physical function. Some scales are complex and are used by academics - however there may be a need to develop an appropriate patient self scale tool that is easy to use

The Bell ability scale is already up and running and many patients are familiar with it.

It took me years to find out some of this stuff and I found out via other patients or by asking my GP if we could do things like this - my GP never thought to suggest it, probably because he doesn't seem to really get how disabled I am (invisible illness), even though I've spelled it all out for him.

I couldn't agree with Sasha more on this point - despite using a wheelchair, being housebound and often bedbound for 7 years my GP seems to have no idea of the level of my disability. As Sasha says, new ideas are great, but if no one knows about them they are a waste of time. It has taken me 7 years to discover there is a voluntary car service that will take me to GP appts - despite even asking the practice manager how they expect me to get there! My GP has never suggested any help with accessing the service, never offered home visits or home phlebotomy, I didn't know there was a delivery service from the chemist etc etc
 

Keith Geraghty

Senior Member
Messages
491
Hi

in response to the last few ideas: GPs are trained via a vocational training programme that requires rotations in hospital followed by primary care practice. The curriculum they follow wont include much on ME/CFS - the part I have seen talks about CFS within MUS and the need for a biomedical model approach. There may also be reference to NICE guidelines (which GPs may refer to as it includes a 2007 Review of so-called best evidence). GPs once qualified (MRCGP) work as salaried GPs or as indepedent contractors. To get any GPs in the country to adopt any approach (suggested above) would be tricky. The 1st problem is will the approach put forward fit with the "recommendations and best practice guidelines" - probably not. 2nd GPs follow clinical judgement and may decide that a patient asking for a tilt table test is in fact seeking unnecessary medical investigations (see Salmon, Stanley and Peters work on this)* not recommended, but exists, also White 2005 warms of this phenomenon. It it comes from patients it might be seen as an "organised campaign" to have tests to seek to attack doctors - where have we heard this before. 3. How to reach all GPs - thus would be extremely hard. I am trying to reach GPs in my own research via publicaations eg BJGP.

Empowering the patient may be a much easier route - as the patient can bring the information to the GP or request things of the GP armed with some tool that the GP may research.

In the last few days Im swayed towards the Self-Reported Rating scale. I know the Bell scale but think it could be updated and simplifed. I think the GP request idea is also good, but will have to be patient side -

Still hoping for other innovations - tech, practices, things Ive not thought of.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I think there is a thing about home visits but also just the need to easily cancel appointments on a bad day. GPs seem to like counting up missed appointments and use it as a statistic for how feckless their patients are. However, if someone with ME is having a bad day then they may need to cancel an appointment at quite short notice

nods, when I was still able to get to a dr, that was big issue for me too. Doctors who didnt understand this illness well get very peaved off with patients who cancel out at last moment as I was expected to give 24hrs notice to some or be charged for appointment. ME patients often cant predict how they will be in 24hrs.
.......

One thing one of the clinics used to do which I think I forgot to mention in my other post is due to my issues waiting in a waiting room for long and the fact that drs often end up running behind with build up patients. One of them which was only 5mins away we ended up going to them phoning me at home when the patient before me was called in.. that way I'd arrive at the clinic only around 5-10 mins before the dr was actually ready to see me.
 

user9876

Senior Member
Messages
4,556
nods, when I was still able to get to a dr, that was big issue for me too. Doctors who didnt understand this illness well get very peaved off with patients who cancel out at last moment as I was expected to give 24hrs notice to some or be charged for appointment. ME patients often cant predict how they will be in 24hrs.
.......

One thing one of the clinics used to do which I think I forgot to mention in my other post is due to my issues waiting in a waiting room for long and the fact that drs often end up running behind with build up patients. One of them which was only 5mins away we ended up going to them phoning me at home when the patient before me was called in.. that way I'd arrive at the clinic only around 5-10 mins before the dr was actually ready to see me.

I've found it is often the good doctors that run late because they spend the time to listen to patients. I was thinking a system that would text a requested time before the appointment was actually going to start would be good. Even if that is a couple of minutes if someone has a car and wants to wait in the car in the car park rather than the surgery waiting room.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
In the last few days Im swayed towards the Self-Reported Rating scale. I know the Bell scale but think it could be updated and simplifed. I think the GP request idea is also good, but will have to be patient side -

IIRC, the Bell scale has some problems in that each level can have contradictory bits. I'm not able to place myself on the scale.

But I'm wondering how much benefit the scale is to patients in a GP setting, rather than a research setting? What's the point of it?
 

Keith Geraghty

Senior Member
Messages
491
Sasha - researchers may develop scales to help them assess patients, however I think it might be useful for patients with ME/CFS (or sufferers) to have a simple rating scale that they can use to track their progress, they might able to able to use it to tell a GP for example that my health has gone from a 5 to a 6 or from a 7 to a 4 recently. I know a lady in Italy who runs a Facebook page doing an exercise and diet plan for people with ME and she has developed her own scale and offers it to others and they seem to find it useful. Academic scales tend to be complex and not patient friendly.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
A second idea that has been put to me is to develop a Self-Rating Scale of Physical Function that patients could use to assess their current or changing health status eg 1-10 scale with different levels of wellness - to develop a scale, test it with patients, then make it available to both patients and health professionals. This may be considered an innovation.

Health scales with this illness are a very hard thing. There are already several of these out there but it tends to be always the case of some patients with ME fit into a scale well while others dont eg many scales have more then one thing mentioned at each level and I may meet something in one area with this illness say its something which puts me at a 4/10 on the scale but it ends up clashing with something else further up on the scale which I met. Im yet to fit cosy into any of the scales.

I personally think developing scales should be left to the ME experts till one of those form one in which all of us can fit (if possible)... this area is just way too tricky.

as Sasha said "the Bell scale has some problems in that each level can have contradictory bits. I'm not able to place myself on the scale.
"
same for me, I dont fit on that scale either. and if Dr David Bell one of our most top ME experts cant get a scale right for all, I dont like the changes of someone less experienced with this illness.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
@Keith Geraghty - did you see this from another thread?

Early and Accurate Diagnosis of ME/CFS

This is the main MEA initiative for ME Awareness Week

Firstly, we have produced a new MEA information leaflet on Early and Accurate Diagnosis for patients

This can be accessed and downloaded (free) on the MEA website:
http://www.meassociation.org.uk/201...nals-that-could-improve-prognosis-9-may-2016/

Secondly, we are producing similar basic 'desk top' information for doctors

Thirdly, we are preparing a CPD learning module on Early and Accurate Diagnosis for health professionals

More detailed clinical guidance on symptoms, examination findings, investigations, differential/misdiagnosis of ME/CFS etc can be found in the MEA purple booklet - after some publication delays the 2016 edition will be available shortly

Dr Charles Shepherd
Hon Medical Adviser, MEA

So maybe there's some scope there for presenting things to GPs that patients need them to know, such as OI testing? GPs can do a "poor man's TTT" in the surgery without sending patients straight off for an expensive test. If they're being trained to not test because the BPS model teaches it's wrong to encourage patients to think they're actually ill, we've got to do what we can to counter it. And if GPs won't accept that info from charities, maybe they'll accept it from your group. If the MEA are doing a CPD unit, maybe you can too?

I don't really understand the system - I doubt many patients do - but you'll be the best judge of how to best get the needs we're putting forward met within the system, if it's possible.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
mfairma: I understand forum members would rather the question of how ME/CFS is perceived and treated by doctors is of paramount concern, however some members have raised the point that they would benefit from GPs offering certain symptom specific support, eg short wait times, quiet areas, skype calls, and so on - I would not under estimate the importance of making the GP visit easier and less problematic for ME patients - and as someone has already mentioned, getting GPs and primary care teams to offer such services may help change the way GPs and others view the illness, given they will have to pay more attention to the types of symptoms patients experience and understand why those symptoms occur.

It is frustrating as so much needs to change but we need to remember Rome wasnt build in a day and researchers like Keith could help.

thanks Keith, I much appreciate when I come across researchers willing to help change something with this. Even something like making it so that medical appointments were easier for us would be a big thing even if that is like a ripple in a pond of the appointment issues.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Sasha - researchers may develop scales to help them assess patients, however I think it might be useful for patients with ME/CFS (or sufferers) to have a simple rating scale that they can use to track their progress, they might able to able to use it to tell a GP for example that my health has gone from a 5 to a 6 or from a 7 to a 4 recently. I know a lady in Italy who runs a Facebook page doing an exercise and diet plan for people with ME and she has developed her own scale and offers it to others and they seem to find it useful. Academic scales tend to be complex and not patient friendly.

Still not sure of the benefits of this one, given that patients know how they're doing without a scale (and can communicate it to doctors without a scale - "I'm usually just housebound but now I can't get out of bed").

Access to care seems the more pressing need.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I would not under estimate the importance of making the GP visit easier and less problematic for ME patients -

Another issue I had with a clinic is that some have air fresheners. I've come across some having them behind the desk. Things like that are also a huge issue for some ME patients and can be big problem if we need to use the clinics toilet. Ive had to request one clinic to get rid of air fresheners they kept in the waiting room. (they did do this for me)
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Still hoping for other innovations - tech, practices, things Ive not thought of.

When you say "tech", what sort of thing are you thinking of? Can you give an example of an existing tech innovation in relation to another disease that would give us a bit of an idea of what you want? Same for "practices"?
 

user9876

Senior Member
Messages
4,556
Sasha - researchers may develop scales to help them assess patients, however I think it might be useful for patients with ME/CFS (or sufferers) to have a simple rating scale that they can use to track their progress, they might able to able to use it to tell a GP for example that my health has gone from a 5 to a 6 or from a 7 to a 4 recently. I know a lady in Italy who runs a Facebook page doing an exercise and diet plan for people with ME and she has developed her own scale and offers it to others and they seem to find it useful. Academic scales tend to be complex and not patient friendly.

I think 'scales' should be treated with a great deal of caution. As recording instruments they may be ok but we shouldn't assume that random sets of questions can lead to linear scales. There are dangers that with sets of questions a move from 5 to 6 is not the same as a move from 6 to 7. Looking at things like the SF36 scale and detailed answers suggests that there are a bunch of questions at the middle that are bunched and not well ordered.

If you have 10 questions for levels are they always ordered in that way for every set of symptoms and if so are the equidistant.

I guess the issue becomes one of what is the purpose of the scale and hence what are the necessary properties. I would say that defining these questions is a prerequisite to any scale design.

Does going to a GP saying I've moved from a 6 to a 4 help the GP understand what is wrong and what changes are happening? I was wondering if symptom recording checklists and severity would be more useful in terms of a GP assessing any changes and possible causes or actions that could be taken. For example, if pain is increasing/decreasing then this could help trigger a review of pain medication. If sleep problems are increasing then this could trigger a review of any sleep medication etc.

The problem is that such reporting can take time. But wouldn't a GP ask some of these questions? Could simple tools (phone app?) be used to collect and graph data so that the doctor is not relying on someones memory at the time?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I've found it is often the good doctors that run late because they spend the time to listen to patients. I was thinking a system that would text a requested time before the appointment was actually going to start would be good. Even if that is a couple of minutes if someone has a car and wants to wait in the car in the car park rather than the surgery waiting room.
That's what a friend of mine does - he doesn't have M.E. but gets stressed waiting in waiting rooms. I think that it may just be a specific doctor who allows it though.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Sasha - researchers may develop scales to help them assess patients, however I think it might be useful for patients with ME/CFS (or sufferers) to have a simple rating scale that they can use to track their progress, they might able to able to use it to tell a GP for example that my health has gone from a 5 to a 6 or from a 7 to a 4 recently. I know a lady in Italy who runs a Facebook page doing an exercise and diet plan for people with ME and she has developed her own scale and offers it to others and they seem to find it useful. Academic scales tend to be complex and not patient friendly.

Unless all the doctors had been trained in the scale, I think it wouldnt mean much to them at all.

As a ME person, Im well aware if im getting better or worst and very capable of telling them this and often do tell them this but it seems they dont understand.

There is often thou no easy way to get a doctor understanding as I'll often be worst in some areas and better in other areas as my ME is really complex (I just dont think a simple scale could cater for this either).

eg im fair better with some things eg I dont get FM which I used to have severe no more to the point my own clothes hurt me and I couldnt have blankets on my bed, I dont have as many food issues eg I can have dairy now again, I dont have tremors all the time or severe spasms, Im not having complete mind blank outs where I suddenly become completely unaware no more, I dont have as much noise intollance, light no longer hurts my eyes, I can now go to the toilet again without enemas as my bowel is functioning again etc etc. so are I better? ?

the issue is though I are better in so many ways and I have far less symptoms now but Im worst in other ways eg Im ending up in hospital with my ME much much more due to collapse and then need a drip .. so are I better or worst?? I know what has improved and what hasnt, but how does a scale show this to a dr? Its useless.

Scales probably work better for the less complex ME cases, I assume someone who has an exercise plan probably has ME/CFS as not as complex as mine is (Im overdoing very often just in my life while trying to survive). If you think a scale like the one the other on FB has may work for such a varied group of us, I suggest to post it up and get comments to see if we could all fit into something like it and if people think it will give a good indication of thier illness.
 
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