Help please: feedback on awareness info for GP's

[elliepeabody]

Commissioners have asked our Patient/Carer group to put together some GP awareness material to be disseminated at the CCG Training sessions.

We were asked to be brief (Commissioners know me too well!)
So what we have done is put together a couple of mind maps (and I will also include a sheet of references). One is intended to be an overview of ME & CFS, the other priorities and practical suggestions for GP's to support their ME & CFS patients. Nearly all of the information comes from the ICC or the CCC.

I would be grateful for feedback on both content and design - suggestions for amendments, deletions or additions welcome. Not done anything like this before so the use of colour could probably do with some revision - plus I wasn't sure if light text on a dark background was better than vice versa. The priorities document probably doesn't have enough white space.

Thanks for looking at this for me.
Ellie

Please note - updated versions of both documents (Mind map 1.6 & Priorities 1.2) are in my further post below

 

[sarah darwins]

I think they're really good, Ellie. I found them both easy to follow, which is rare for me with this kind of thing. I wouldn't worry too much about aesthetics — I doubt GPs will be impressed if they're pretty. There's a lot of clear info, which is what counts. And they would leave any doctor with a sense of the seriousness of the illness.

One typo I noticed — comma missing after "counseling" and before "CBT" (!). I wondered if there might be the word "only" in that line, after "medication", just to stress that these things are not therapeutic.

Hopefully some of the more scientifically-oriented members and medics will come along and give you more detailed feedback. As it's aimed at doctors, maybe you should tag Prof. Edwards and Dr Shepherd for the medics' reaction.

 

[elliepeabody]

Many thanks for the feedback @sarah darwins , much appreciated, have made the adjustments you suggested. I find that I get to a point on these documents that you can't see the wood for the trees!

Also have tweaked the other document following feedback from another group member, would be great if @charles shepherd and/or @Jonathan Edwards could cast their eye over the documents if they have a minute or two to spare. These are the updated documents:

 

[Jonathan Edwards]

Many thanks for the feedback @sarah darwins , much appreciated, have made the adjustments you suggested. I find that I get to a point on these documents that you can't see the wood for the trees!

Also have tweaked the other document following feedback from another group member, would be great if @charles shepherd and/or @Jonathan Edwards could cast their eye over the documents if they have a minute or two to spare. These are the updated documents:

I am not quite sure what to think about this. I agree that it makes sense to raise awareness of ME/CFS with GPs but I am doubtful about trying to give potted advice. If I was a GP and looked at the Priorities map I would be a bit bewildered. I would want to know what evidence there was for various suggestions and also some more practical details. It all sounds quite sensible but rather vague. My thought would probably be that if I had little experience with ME then it would be best to refer to someone who does.

I am also a bit concerned that nothing is said about how a diagnosis is actually made and what the implications of making a diagnosis are.

I think as a GP I would be more influenced by a list of hard facts about incidence and evidence for efficacy of treatments.

 

[eafw]

I would be grateful for feedback on both content and design

Do you have a deadline - that is, how long do we have to give feedback to you ?

Meanwhile some suggestions on content:

1) in the "priorities" chart, in the "orthostatic" box, add in something about doing a simple - ie in the GPs surgery - POTs test, or getting patients to check themselves at home. It is very easy and cheap to do before referall onto a specialist, and useful to know in terms of management.

2) again in "priorities", under "sleep" it is worth noting that especially in the early stages standard sleep hygiene protocols are not at all useful. Could add about using light (if you're mentioning herbal remedies, there is plenty of evidence for the effect of light on circ rhythms)

3) under endocrine add in potential exacerbation of PMT/menstrual symptoms and vice versa effects of hormones on other ME symptoms.

4) in "mindmap" you have recovery rate as 10%, do you need to say that for younger patients the rate is much better ?

5) general Q, are you assuming they already know how to diagnose the condition ? You start with "if ME suspected" which presupposes some level of understanding from them.

 

[JaimeS]

There are a few 'editing' marks I would make. This is for the file on the left.

1) Characterized by: "onest" should be "onset"

2) Where it says that whiplash or spinal injury may predispose -- that doesn't seem to go under the heading of "neurological impairments include". This should be under another heading, maybe 'characterized by'

3) Where it says 'pit/thyroid/adrenal function', it would be more sensible to say dysfunction, since it's a list of impairments

4) Cardiovascular should be one word.

Overall, that document presents an accurate and pretty whole picture of M.E. -- nicely done to fit so much information in such a small space and still have it be perfectly clear.

The one on the right is a lot harder to read / make sense of. Consider splitting this into two pages. I understand the value of having it be on one page, but it's just too much at once; and where, in the one on the left, the eye was led easily from one idea to the next, this doesn't have that same visual simplicity.

All that said, I agree with @Jonathan Edwards that you seem to be starting from a place where you assume that the GP even knows what ME is. (What to do if you 'suspect M.E.'... none of my physicians have ever 'suspected' M.E.!) I think physicians would like stuff that's more:

Fact about M.E. (citation)
Fact (citation).


Tried to do this myself, but can't say I was particularly successful. I really think you've made a good start, here, and I hope you'll keep working. If you do, I will keep giving feedback.

Thank you for doing this!

-J

 

[BurnA]

Commissioners have asked our Patient/Carer group to put together some GP awareness material to be disseminated at the CCG Training sessions.

The first thing i would say is "awareness material" is very vague, i prefer to work with very tightly defined briefs.
If this is all the information you were given i don't envy you!

That being said i have provided some feedback, please don't be offended or be put off in any way. I realise how much time and effort these things take, and then when someone criticizes it, it can be very deflating. Therefore please read and if you disagree, no problem. Also, i didn't read any of the previous comments because i didnt want to be influenced, so if there is duplication, that is why.

Here are my comments on the priorities pdf :

At first glance its too much, too confusing, too wordy.
The purpose of arrows and colours should be very clear whereas i don't really follow. I cant tell what a light blue vs a dark blue vs a green shaded bulletin is. It should be obvious. For example, the light blue seems to be related to diagnosis but then talks about GET which is a 'treatment'.

The same shade of blue is used in upper right and centre. What is the significance of this ?
The upper right blue then turns into green. Why ?

The green switches randomly between symptoms and techniques. EG one is Pacing, another is Pain. Another is Endocrine which is vague to me. (neither a symptom nor a treatment). Endocrine is also listed under Exclusions.
Would it be better for each green box to have a symptom header and treatments listed underneath ?
The way the green wraps around in a clockwise manner is a bit confusing too.

Seems to be some duplication :

Upper right blue and top centre blue box both talk about Delay.
A side comment to this is that the upper left blue talks about 4-6 months for diagnosis. ( i realise this is part of some official diagnosis material but for me personally it is nonsense, i think i have read some papers questioning this)

Maximise Sleep and Effective Rest and Relaxation seem to overlap.

I think you should ask yourself what exactly is the purpose of this :
Is it to provide doctors with a list of symptoms and proposed treatments ?
Is it to help diagnosis ?
Is it to help provide general advice for doctors to give patients in lifestyle managment ?
Is it to provide feedback on what patients find useful or is it to provide scientific treatments ?
Is it to provide a patients perspective on ME ?
Is it a combination of all these ?

I think if you Identify the main purpose then the structure will follow a lot more easily.

To me there is something odd about this - a patient carer group is providing information for GP training.
Surely GP training should be based on the latest scientific information ? If you agree with this then how about quoting a few official publications.
Have you consulted the International Consenus Primer (attached ) ?

I know this may not have been easy to read and indeed i don't mind if you disagree with everything i said, by my nature i provide honest feedback because generally its the best. However i qualify everything i said, with the fact that i don't know the full purpose of this.

 

[elliepeabody]

First I want to say a big thank you to you all for taking the trouble to give such detailed feedback. I don't have a medical background (which obviously shows) and haven't done anything like this before, so the documents are bound to need revision. I did refer extensively to the ICC and CCC when writing the documents.

The service is currently therapy led and very overstretched, based within a community service with limitations in oversight and management support. It was in this context that the Patient/Carer group was asked to prepare GP awareness documents - but they had to be brief. We have been told that GP's simply wont be interested if the awareness documents are too long. This was the thinking behind mind maps. There is no ongoing care provided so GP side of care is very important.

@Jonathan Edwards - I take your point about references, when the documents are finalised I was going to include a list of references (possibly something along the lines of the format in the MOM).

The problem regarding referral is that we do not currently have a consultant lead (although we are working on that). The specialist service offers diagnosis (usually via GPwSI) and about 4 therapy sessions and then discharges back into the care of the GP. Also a patient can be unwell for months before referral, then have to wait 18 weeks after referral, so one of the aims of the document was to try address the gaps in care. Also to get GP's thinking about referral for diagnosis at an early stage by raising awareness of specific symptom patterns.

@eafw I'd like to get this done in the next week or so. Thank you for the points you have raised.
1) POTS test - good idea easy to do as a matter of course
2) Sleep - do you mean hyposomnia in early stages which some experience? (My sleep was dreadful from the start & early sleep management advice may have helped)
Light - another good point, it's something that Sarah Myhill talks about too.
3) Yes, PMT, menstrual and menopause need to go in there too.
4) Yes, you are right again - better prognosis for the children and YP
5) I don't think I have thought through clearly enough how to pitch the level of awareness, I will give it some more consideration, thank you.

@JaimeS thank you for your thoughts.
1) Yes that's a typo
2) Yes, as you suggested I moved the 'pre-dispositions' to the 'characterised by' in the second version as I agree it makes more sense there.
3) Yes, dysfunction is better.
4) Not sure why I put cardiovascular as two words - doh!

Thanks for the feedback about the Priorities document - I agree there is too much squeezed in. Plus I need to think much more carefully about level of awareness among GP's - and how best to address this. Thank you for your offer of further feedback, its much appreciated.

@BurnA please be assured, I wont be offended, it can be hard to read critisim but at the end of the day the documents need to be improved, and I am grateful for the time taken to help me do this.
You are right I need to give more thought to the colours in the Priorities document. I was trying to split into overall topics, using colour, but it does lack coherance and logic.

Ah I see what you mean re the switch between symptoms & techniques - that is muddled and needs revising. Whoops you are right, delay is duplicated. I dithered over the 4-6 months issue, I personally think it is far too long, especially when you add in possible 18 weeks referral time. Can you recall the research you were referring to regarding this?

I did try to differentiate between maximising sleep and effective rest and relaxation, as they are different things.

As you said at the begining, a big problem is the vagueness of the brief. Our group is aware that GP awareness is a problem, and also reluctance to prescribe medications for symptom control. (the service is currently non-prescribing) What I wanted to do was to provide GPs with avenues to consider regarding meds for symptoms and advice to give their patients for management, both prior to diagnosis and after the patient has been discharged from the specialsist service. As I said earlier I did refer to the CCC and ICP and had intended to include a list of references with the mind maps to back up the content.

The patient/carer group are doing this because it won't be done otherwise - the service simply doesn't have the resources. Thanks again for your feedback, it's a big task, and it really helps to have detailed input.

Well, this has been very useful. Themes have emerged and errors spotted. I think I need to start again with the priorities document. Thankyou everyone for your help and I'll post the updated document when I have written it - if I dont throw the laptop in the pond in frustration first!

 

[sarah darwins]

Keep at it, Ellie. I think you've got the seed of something really good there.

You're dealing with a very imperfect situation and what you're doing may help at least a proportion of GPs in the area to deal more appropriately with their patients (and help newly suspected cases avoid doing all the wrong things).

In an ideal world GPs would be reading all the latest research from around the world. But they don't. And we know that UK GPs are often getting a very skewed picture from various sources. I think what you're doing will clarify a few things for them.

 

[elliepeabody]

Thanks for your kind words and encouragement @sarah darwins

 

[BurnA]

@elliepeabody

Hope you are not feeling frustrated!

here is where i read about the 6 months...

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

Scroll down to International Consensus Criteria:
The Canadian Consensus Criteria were used as a starting point, but significant changes were made. The 6-month waiting period before diagnosis is no longer required. No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for 6 months.

I cant really comment on the article itself because i wouldn't have the expertise. I just remember this is where i read about discarding the 6 month waiting period.

 

[elliepeabody]

Thankyou for digging up the link @BurnA
When I was drafting up the document I had in the back of my mind that I had read something of the like somewhere, but couldn't remember where. I agree that patients shouldn't have to wait 6 months for diagnosis - by that time many will have lost their jobs or had to drop out of education.

It'll be worth all the frustration if we end up with something that is useful.

 

[JaimeS]

@elliepeabody -- feel free to utilize anything you see here.

-J

 

[Jonathan Edwards]

Thankyou for digging up the link @BurnA
When I was drafting up the document I had in the back of my mind that I had read something of the like somewhere, but couldn't remember where. I agree that patients shouldn't have to wait 6 months for diagnosis - by that time many will have lost their jobs or had to drop out of education.

It'll be worth all the frustration if we end up with something that is useful.

There should be no mention of a 4-6 month time to diagnosis. If these figures mean anything it is to do with cohorts for research. Clinical diagnosis never requires waiting any time at all. Any possible diagnosis has to be considered from the outset. This is the sort of thing that worries me about producing advice guidelines. I do not think the ICC or CCC are relevant here. Decision making in medicine is a complex and counterintuitive business and it would be unwise to venture into advising without being very well versed in that. Perhaps the key things for GPs are the tests needed to narrow down the differential diagnosis.

I worry that the commissioners will think they have dealt with the problem by having some advice, whatever it might be. I rather tend to feel that maybe they should be told they should be able to produce guidelines themselves - i.e. do the job they are paid to do.

 

[elliepeabody]

@JaimeS thank you for the link. I hadn't seen that before. Very clear and well laid out, it will be useful, I especially like that you have linked to recent research. I saw this on twitter this morning which is interesting, pain control is so often overlooked by GP's. https://batemanhornecenter.org/wp-content/uploads/2016/02/MECFS_FM_Treatment_Advice.pdf

@Jonathan Edwards thank you for your further thoughts on this. Earlier on in the thread you said that you were concerned that there was no mention of how a diagnosis is made and the implications of a diagnosis. You also seem to be saying, in your second post, if I have understood correctly, that the information we are preparing should not venturing into the area of clinical diagnosis as it is such a complex area. Have I got that right? So really anything on diagnosis needs to be written by a clincian?

What we have been trying to do....obviously with some difficulty, is to address the lack of GP knowledge surrounding the range of symtoms and the options available for dealing with those symptoms. In our area there is a massive black hole into which patients with ME & CFS fall. The specialist service wont accept referrals for diagnosis until symptoms have been present for 6 months. Then as I said above after diagnosis & a few therapy sessions patients are discharged back into the care (or often lack of care) of their GP.

What can be done to improve support and symptom control and reduce harm both when a diagnosis of ME or CFS is suspected and after diagnosis is confirmed?

However, I do appreciate that GP's need to recognise the possiblity of ME or CFS in the first place, which is where the diagnosis information is important.

As to Commissioners producing guidelines, well we are working within a highly dysfunctional system. There are significant problems due to funding, the approach of the Provider and the general lack of interest in ME & CFS. We are very lucky that we can meet with Commissioners and that Suffolk Commissioners are supportive. What is needed is culture change both at CCG Board level and at the Provider, and much more challenging KPI's in the contract. Our group is working on both of these things but progress on both is painfully slow.

It is the Provider which should be producing this training material, but they aren't, even though the delivery of the material was established as a priority in 2009 at the Joint Health Overview and Scrutiny Committee. There is a further layer of complexity in that the service is commissioned over 7 CCG's (talk about trying to herd cats), and the approach of one of the CCG's is particularly problematic. The CCG Boards recognise that Providers need to be held to account, but actually getting it done it is a different matter.

Our group has agreed a biomedical service spec with Commissioners and we are currently in the 'transition phase'. However, progress is impeded by the approach of the Provider and their unwillingness to allocate any funding to facilitate transition. There are no other Providers banging on the door to deliver the service so we are stuck with them atm. We hope to secure a clincial lead following the jobs ad placed last October, but again funding is an issue. In the past there has been interest from a couple of clinicians who our group would have been very happy to have leading the service, but the NHS dithered for so long that they went elsewhere.

That is where we are atm. The NHS appears to be in meltdown and Commissioning teams are very overstretched. Bad as it is it could be worse, at least Suffolk Commissioning hasn't been outsourced and we have had continuity of personel over 10 years. If the our group hadn't been involved I believe the service would have reverted to NICE (despite Terry Mitchell's legacy) or closed. If we can secure a suitable clinical lead, issues like this awareness material will hopefully be sorted out. In the meantime making the best of a bad situation is all we can do other than give up.

 

[ithought]

It is also worth mentioning that the ME association produce an excellent booklet on clinical guidance and ME. I know there out of print right now (feb2016) but it's worth mentioning if they want further information as when they have stock in they will send it out free to GP's ..

 

[Jonathan Edwards]

It is also worth mentioning that the ME association produce an excellent booklet on clinical guidance and ME. I know there out of print right now (feb2016) but it's worth mentioning if they want further information as when they have stock in they will send it out free to GP's ..

That was actually the other thought I did not put down @elliepeabody. Charles has not chipped in here but I agree that the MEA booklet is about as good a source as one could want. I realise it may be too long though.

I have been away on holiday and not really been able to focus until today. I think what I want to say is that I fully understand the complexities of the background and I think you have made a very good start at getting something short and punchy on paper, but to get GPs to take it seriously it needs a clinician's input. There are lots of good bits but also some bits that will not help. I am not sure quite when I would have time to go through it in detail but I would be happy to try if the deadline is not too tight. It might be best to set up a PM or even meet up. Getting to Suffolk is fairly easy for me especially anywhere near Woodbridge, where I have a base. I am aware of the need to keep momentum going in East Anglia and would want to help if I can.

 

[elliepeabody]

That was actually the other thought I did not put down @elliepeabody. Charles has not chipped in here but I agree that the MEA booklet is about as good a source as one could want. I realise it may be too long though.

I have been away on holiday and not really been able to focus until today. I think what I want to say is that I fully understand the complexities of the background and I think you have made a very good start at getting something short and punchy on paper, but to get GPs to take it seriously it needs a clinician's input. There are lots of good bits but also some bits that will not help. I am not sure quite when I would have time to go through it in detail but I would be happy to try if the deadline is not too tight. It might be best to set up a PM or even meet up. Getting to Suffolk is fairly easy for me especially anywhere near Woodbridge, where I have a base. I am aware of the need to keep momentum going in East Anglia and would want to help if I can.

@Jonathan Edwards thank you very much for your constructive suggestions and offer of support. As @ithought says the Purple booklet is very good, but the challenge is to put something together that Commissioners will accept as brief enough to deliver to GPs, yet remains genuinely useful. Also priorities from clinical and patients perspectives will be different.

Woodbridge would certainly be possible for both myself and our other group member from Suffolk. We are next meeting with Commissioners at the beginning of next month, and I had hoped to get these documents finished by then. However it would be much better to delay and get the documents right, than rush them. I'll PM you.

 

[suffolkres]

Been giving lots of thought to this thread and request. I think it's a case that more heads will be better than one to nail an appropriate GP friendly "15 minute" "speed dating" guide! There is a lot of material out there which has been given to local practices already, eg The MEA Purple Book - and the Canadian Criteria Consensus Document was sent by the then consultant to all local practices. BUT, you can lead a horse to water but can't make them drink..........I have no evidence that any of the material has EVER been accessed.
Similarly GP will refer and ignore all bar the first page of the referral form and information required.
Talk about evidence based medicine.....!

 

[ithought]

I have given out the ME Associations book to a few GP's and they have read them.. Or at least I have noticed a positive change in attitude after they have been given the information. I would hope that others in other parts of the country would experience the same. It might help if they have something to take away and read.. Or to even put in the practice library for when they actually realize they need to learn about the condition. Good luck with the project though it sounds excellent.