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

[Keela Too]

Oh and a much greater awareness that the illness affects patients every day - they can't just wait for a "better day" to come in and talk to the doctor - especially when more severely affected.

So really it needs to be acknowledged that for some patients home visits should be an essential part of their on-going care.

 

[Bob]

I think people may be missing the purpose and focus of this project.

As I understand it, this isn't intended to be a project to explore the wholesale transformation of the way ME is recognised and treated. They won't be interested in changing the NICE guidelines, or implementing wholesale changes to GP training.

They are asking for projects that explore "innovations in primary care that benefit patients".
So, I think they would be seeking specific innovative suggestions that address the needs of patients in general.
e.g. issues in relation to such things as practical assistance, interactions with medical staff, procedures and infrastructure, etc. And perhaps ideas about how to improve services for patients with complex or unusual needs.

The Health Foundation has a call for projects exploring innovations in primary care that benefit patients - particuarly in primary care. I am a researcher based at the University of Manchester Centre for Primary Care. I would be happy to look at running a project exploring innovations to improve the care of patients with ME/CFS in the community.

 

[user9876]

Oh and a much greater awareness that the illness affects patients every day - they can't just wait for a "better day" to come in and talk to the doctor - especially when more severely affected.

So really it needs to be acknowledged that for some patients home visits should be an essential part of their on-going care.

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 - the problem in the UK is that it can be hard to even get in touch with the GPs surgery as their phone lines can be busy with people trying to get appointments (or that was my experience a 3 or 4 years ago).

There could be simple practical things to help such as publishing delays (on a web page) or texts to specify the delay so that people could avoid waiting on uncomfortable seats in a crowded waiting room.

 

[Aurator]

I think people may be missing the purpose and focus of this project.

As I understand it, this isn't intended to be a project to explore the wholesale transformation of the way ME is recognised and treated. They won't be interested in changing the NICE guidelines, or implementing wholesale changes to GP training.

They are asking for projects that explore "innovations in primary care that benefit patients".

Yes, this is a little like the incident my father witnessed as a young man, when a double-decker bus had knocked down a pedestrian and the poor victim was pinned by his legs under the bus' rear wheels.

Several well meaning witnesses to the incident, including the bus driver and a policeman, were debating how best to make the victim more comfortable and spare everyone the heart-rending cries for help that the pain and terror of his situation were causing him to make. Some people suggested a cushion for the man's head, a young woman held the man's hand, others were asking him where he lived so that his family could be contacted. Only my father, it seems, felt the urgent necessity of getting the bus off the victim's legs; the victim's repeated cries of "get the bus off my legs" were a bit of an extra clue that this was the only sensible course of action under the circumstances. A jack or two were found and the man was soon released from his ordeal.

He eventually made a full recovery. He was particularly grateful for my father's intervention, but was left incurably puzzled as to why no-one else present at the scene of the accident could see the absolute necessity of getting the bus off his legs as quickly as possible.

 

[Comet]

Dear Phoenix Rising members,

The Health Foundation has a call for projects exploring innovations in primary care that benefit patients - particuarly in primary care. I am a researcher based at the University of Manchester Centre for Primary Care. I would be happy to look at running a project exploring innovations to improve the care of patients with ME/CFS in the community.

I am looking for ideas - thus if you have any suggestions about how you think care might be improved, please get in contact with me, either post your suggestion below on this site, or you can contact me directly via my email address.

Given evidence that ME/CFS patients report poor doctor-patient encounters, particularly with GPs, I thought it might be useful to look at ways of improving the situation for patients. For instance, if patients are fatigued - could GP practices be made aware in advance in order to shorten in clinic waiting for patients in ME/CFS; if patients have sensory overload, could GPs accommodate this by booking appointments at quiet times or reducing lighting and noise to a minimum. It may not be possible to ask GPs to do more home visits, as this may be a constraint - however are there ways for GPs to use email, skype and other technologies to communicate with ME/CFS patients? This is some of the ideas I have come up with so far - however I would like to put it to the Phoenix Rising community for your ideas.

There is no guarantee of funding - however a good idea may stand a good chance getting funded.

I look forward to your suggestions.

regards

Keith

email: keith.geraghty@manchester.ac.uk

I think this is a great idea to start to change the way people perceive us. If docs had to accommodate our symptoms, they might start to realize that something serious is going on here. Why not approach things from all angles?

I am not in the UK, so not sure if my opinion matters. But I would love to be able to lay down with my head propped up while waiting for a doc in a fairly quiet room (no loud colors on the wall). It would also be super helpful to have someone come to the house to draw blood. Skype consults would be great too.

Of course, at the moment, I don't have a doc who takes me seriously. But if their offices had to start to implement some of these accommodations for us, combined with the other positive things happening now, maybe this would help hasten some hint of awareness.

 

[MeSci]

My new doctor provides telephone consultations on any day during the week. I just have to phone in the morning and a doctor will return the call later the same day or the next day. If I want to speak to my specific doctor then I have to book a few days in advance. On the odd occasion that I need to actually physically see the doctor (it's only happened once) then they are very willing to make a house call. Also, they have nurses who visit homebound patients if you need e.g. blood samples taken. It's a tremendous service and makes my life very easy. It's the most efficiently run, and pleasant, doctors surgery I've ever used. If I need a prescription, it's sent electronically from the doctor to the pharmacy who deliver if for free the next day. So I can phone the doctor in the morning, and get a prescription delivered the next day, without stepping outside my home. It's incredibly efficient, and I think this is the sort of thing that homebound/bedbound patients need to make their lives easier. (As well as needing a generally good attitude from the service providers!)

Wow! If only my own GP would provide such a service.

 

[JohnCB]

I have a nice GP, Dr N, who does come out to see me nowadays, although it did take a few appointments for her to get to understand the degree of my problems. It made a difference when my car broke down and I talked about why I wasn't going to replace it in terms of my medical problems. I think she is probably better clued up than many GPs about ME but as you will realise that can still leave a gap in understanding. One big problem for both my GP and myself is that there isn't a local ME specialist. So she doesn't have any backup and I don't have expert care.

One thing I have noticed with GPs over the years, is their willingness to read written notes. I'm not talking about internet print-outs here - I don't see why GPS should be subjected to that. My present GP, Dr N, will patiently read through any notes I write and sometimes they are quite copious. However other GPs can be quite antagonistic. I was shouted at by one GP, Dr P, for writing a list of the points I wanted to discuss - and handing it to her. This is what I had done with the GP before that, Dr C, who then retired and it was an effective and quick way of communicating.

I think if there was a way to determine just how effective patient written notes can be and educating doctors to encourage the practice and guide patients as to what notes are useful. A lot of time can be wasted and you can get to the end of an appointment not have dealt properly with important issues. Dr C. wouild quickly dismiss unimportant point "Don't worry about that." and then spend the time necessary talking about what she felt was important on my list.

I saw a hospital doctor at a pain clinic and I made up some notes, part history and description of my pain. Part a list of my total symptoms and part a list of my prescription drugs and other thinks I used. It was all stuff that I thought we would probably discuss at some point in the consultation and I was convinced it would save us both time. I offered him the notes. He picked them up gingerly by the very point of one corner, between finger and thumb, laid it on his desk and then opened the hospital notes folder so that it covered and hid my notes he had just point down. Then when he asked me some detailed questions later I reminded him of my notes and pointed outt that he had covered them up. He did look a bit embarrassed then. Then he did read the notes and asked relevant questions like "What do you mean by sleep paralysis?".

I suppose the real point that I should have got to sooner was that these kind of notes are useful for people like us because we do have memory issues and what memory we do have is even more affected as we tire during even a short appointment and struggle to concentrate. I think Dr N. does appreciate that she will get useful information which she might never get in a usual question and answer session.

 

[mfairma]

However other GPs can be quite antagonistic. I was shouted at by one GP, Dr P, for writing a list of the points I wanted to discuss - and handing it to her.

I spoke to my mechanic recently about ME during a service appointment. He has a couple health issues of his own and railed against doctors that you can't talk to them about your health problems the way his customers talk to him about their car troubles. Too many doctors view their patients as unreliable reporters of their symptoms, even in less contested illnesses, too many are unwilling to read relevant research or prior notes and tests, and, more broadly, too many are unwilling to engage patients in trying to treat their health issues. This mirrors the issue in research that doctors in the past have been unwilling to see patients as a vital part of advancing understanding of disease and suggests the problem is cultural.

If you are lucky enough to see an ME specialist, you find a critical willingness to engage with the patient, think critically about the nature of their symptoms, and be creative and experimental in trying treatments. Many of the approaches trialled by my doctor have not helped, but some have and those were born of creative experimentalism and close patient engagement. That approach to medicine diverges widely with my experience with the average doctor and not only gives critical validation to the patient, but results in better patient outcomes.

 

[meandthecat]

support patients to be active partners in their own care.

A phrase with contemporary buzz

I use forum posts to challenge and re-examine my take on stuff and this did come across as Lipstick on a pig, but then I turned it around and started to look at the suspicion I hold doctors in and wondered if there was a will to change that.
Would it be possible to talk to health professionals in primary care at a local level to open up communication and build trust. It seems an impossible crazy dream but hey.



PS. We all want to make this better and I wish you well in this venture

 

[Bob]

Yes, this is a little like the incident my father witnessed as a young man, when a double-decker bus had knocked down a pedestrian and the poor victim was pinned by his legs under the bus' rear wheels.

Several well meaning witnesses to the incident, including the bus driver and a policeman, were debating how best to make the victim more comfortable and spare everyone the heart-rending cries for help that the pain and terror of his situation were causing him to make. Some people suggested a cushion for the man's head, a young woman held the man's hand, others were asking him where he lived so that his family could be contacted. Only my father, it seems, felt the urgent necessity of getting the bus off the victim's legs; the victim's repeated cries of "get the bus off my legs" were a bit of an extra clue that this was the only sensible course of action under the circumstances. A jack or two were found and the man was soon released from his ordeal.

He eventually made a full recovery. He was particularly grateful for my father's intervention, but was left incurably puzzled as to why no-one else present at the scene of the accident could see the absolute necessity of getting the bus off his legs as quickly as possible.

Well, yes, I agree with your points in general but not in this specific case. The Health Foundation isn't the NHS; it's an independent non-profit organisation seeking to improve heath care and health outcomes. So seeking to change fundamental aspects of the NHS via this charity is like a bit like asking your dad to change the polices of the bus company so that they employ more careful drivers whilst also expecting your dad to change government transport policies to make the roads safer.

All I'm saying is that our suggestions would probably be more effective if they are targeted to the grants available.

 

[Mary]

I think this is a great idea to start to change the way people perceive us. If docs had to accommodate our symptoms, they might start to realize that something serious is going on here. Why not approach things from all angles?

This is a very good point which did not occur to me initially. My first thought was, doctors will never go for special accommodations for ME/CFS patients because they don't believe we're actually sick to begin with. But then I turned it around (as you did here) and thought, well, if they are encouraged or taught that ME/CFS patients do need special accommodations, they might start to think ME/CFS is real (and serious) after all. Whatever it takes!

 

[Comet]

This is a very good point which did not occur to me initially. My first thought was, doctors will never go for special accommodations for ME/CFS patients because they don't believe we're actually sick to begin with. But then I turned it around (as you did here) and thought, well, if they are encouraged or taught that ME/CFS patients do need special accommodations, they might start to think ME/CFS is real (and serious) after all. Whatever it takes!

Thanks. At this point, just about anything put forward by a doc/medical person which made me feel like I was an actual patient with real needs, as opposed to a nutty malingerer, would feel pretty good I think.

 

[Keith Geraghty]

Dear members - thank you all for your posts. I am reading everyones comments with interest.

I think its important to highlight that the Health Foundation is an independent body, not the NHS. They are looking for innovations - calling for project ideas. I am willing to look at any idea, however suggestions like asking doctors to apologise; asking doctors to stop NICE recommended treatments like CBT or asking doctors do perform certain biomedical tests - would not fall within the remit of this research call. This call is for innovations - I think there may be a preference for technological innovations eg new systems, e-health, however innovations may also include new practices in health delivery.

I suggested one idea to get the ball rolling but perhaps I didnt make this clear: please make your own suggestions, anything you think might help.

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.

Look forward to any other comments or ideas.

 

[mfairma]

I think people may be missing the purpose and focus of this project.

I don't think anyone is missing the point. I think, given the issues that people expressed, the question is whether there is anything Keith's group can do that addresses the real concerns patients have, rather than the accoutrements of the good care that we should be getting, but, as expressed are not.

I have been trying to get a prescription out of my doctor for over a month, I have to pay out of pocket for teleconferences, and fly across the country for in-person visits -- I am not complaining by the way; I realize my good fortune -- and all those hassles are more than worth it because the quality of care I get is so much better than what I would have access to otherwise. Little touches like Skype conferences would be great, but what matters is the care, as people noted.

Is there nothing that Keith's group can do that addresses these issues a bit more directly, rather than eating away at the edges by focusing on nuances that matter little when the care is today as it is? That I think, is the feeling of many here. But of course, there is also the optics, which are not Keith's fault, of saying you want to help, but the actual content of care is something of another domain. I mean no offense to Keith, because the gesture and interest are rare and valuable, and I recognize that Keith is not the NHS, but it's a bit like Extreme Home Makeover coming to your house and offering to renovate your back garden, while the roof is caving in. A fresh garden would be great and you'd be a fool to reject the offer, but a bit nuts not to rue the craziness of it all.

Based on the concerns expressed, Keith, is there some more direct way in which your group could challenge the quality of care currently offered? I guess I could use a bit more clarity on the nature of help being offered.

Edit: Just finished writing this a couple moments after Keith responded, so my question is moot.

 

[Keith Geraghty]

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.

all other ideas welcome.

 

[mfairma]

The potential of developing and refining scales based on expert-developed materials, such as the ME-ICC and IACFS/ME clinical care primers, could be one way to further assert the primacy of the biological in this disease. Would that be off the table? If so, what would be the nature of the scales you mentioned above? PEM isn't required by the definitions used in most British research. Would that get a mention?

 

[Kati]

Would a needs assessment checklist be a good tool to trial for GP's? That would be innovative in directing the physician into the most pressing issues.

 

[user9876]

Would a needs assessment checklist be a good tool to trial for GP's? That would be innovative in directing the physician into the most pressing issues.

I like this. To try to extend the idea a bit how about some sort of simple checklist/case management system that when someone is newly diagnosed it could help point them to the right resources and help manage the necessary interactions with the surgery. I'm thinking things like care resources, PIP forms, things for occupational health, general advice resources etc). Perhaps having the idea of allocating a practice nurse to help people navigate through these things with a suitable way of interacting (email, phone, skype)?

 

[elliepeabody]

A very interesting thread. As some of you may recall I am involved in developing local services in Norfolk and Suffolk. Progress is being made albeit very slowly. This is the thread - I haven't updated it recently as what is being worked on is commercially sensitive. http://forums.phoenixrising.me/inde...hs-me-cfs-center-goes-biomedical.40268/page-4
We are beavering away though, as are Suffolk Commissioning who deserve a medal for their commitment to this project.

I can think of two issues re the OP that I think are relevant.

The first is that to effectively introduce any innovation you need an understanding of the framework in which you are operating. The significant ramifications of the change from PCT's to CCG's are still rumbling on. We are incredibly lucky that Suffolk Commissioning are very supportive and are resourcing service development. The problem in this rural area is that the service is commissioned over 7 CCG's and getting them all to agree, and the Provider as well, is very difficult. They have different processes and procedures and decision making committees. Not all of these committees operate in the full light of day, so trying to work out what is actually going on can be nigh on impossible. Even something as basic as CPD training for GP's is dealt with differently in each area. So if training material is developed you need to understand how training is organised so that the material that you prepare can be effectively rolled out.

Before you set about introducing anything you need to understand the particular organisational structure of the CCG in which you are operating, get someone within the CCG to take ownership of the project (individual personalities are incredibly important). You also need to understand how Commissioning works in your area. Have a look at the CCG websites for annual reports and details of Commissioning intentions for indications of priorities. There will probably be public meetings too which may provide further insights. Find out what resources are available to implement any changes. Finances within the NHS are dire, but there are always projects going on that you may be able to tap into for funding.

It is essential that you understand what the process is if things go wrong, and promises that are made are not delivered on or you are undermined by those in the CCG who do not take ME & CFS seriously. So, what is the complaints process if things do go wrong? What is the eventual level of influence you are likely to have if you have a fight on your hands? Do you have the time, and other resources to follow through if things don't go smoothly? Will your local Healthwatch help? (Ours won't as they feel the issues are too complex and time consuming). Patient led innovation is a massive culture change for the NHS - you are very likely to meet considerable resistance. For all the promises made at both national and local level 'no decisions about me without me' and the like - that is not the way the NHS operates much of the time. You will be faced with those who have a vested interest in the status quo. Having said that it is not a reason not to try. And of course there are the wider perceptions surrounding ME & CFS which have already been mentioned add a further level of complexity.

The second issue, which is linked to the first, is that the NHS is intrinsically hierarchical. We currently have a service led by a therapist. This means that GP's and Consultants do not always take their specialist knowledge about ME & CFS seriously. In addition patient feedback indicates that the GPwSI in the service do not always take their lead from the therapist lead, because of this hierarchical issue.

There is also the ridiculous situation regarding meds for symptom management. The therapists are not trained to prescribe. There are GPwSI within the service but they refuse to prescribe or even recommend meds. The patient's GP's, because they usually know little about ME & CFS, are not comfortable prescribing either. So symptoms could be better controlled, but no-one will take on the responsibility of prescribing. Better clinical information for GP's about medication for symptom control is an area that the Health Foundation could look at.

We are trying to get a biomedical consultant lead. In the NHS consultants are listened to and taken seriously - certainly much more so that therapists and GP's - whatever their relative level of expertise in a particular area.

With regard to symptoms, are you looking at assessing overall severity or changes in symptoms from a baseline? You could use something like the attached from the CCC - although the hierarchy aspect can be difficult for patients to complete as with a constellation of symptoms it is cognitively challenging. Plus symptoms that may appear low on the hierarchy may still have a significant impact on function, especially when combined with other symptoms.

So to summarise Keith, I think that to effectively carry out what you want to, you also need to think about implementation. And apologies if you have already discussed this as part of your project scoping process.

HTH

 

[Kati]

I like this. To try to extend the idea a bit how about some sort of simple checklist/case management system that when someone is newly diagnosed it could help point them to the right resources and help manage the necessary interactions with the surgery. I'm thinking things like care resources, PIP forms, things for occupational health, general advice resources etc). Perhaps having the idea of allocating a practice nurse to help people navigate through these things with a suitable way of interacting (email, phone, skype)?

Yes that is good but i was also thinking in terms of medical checklist, based on Canadian Consensus Criteria.
- have other illnesses been ruled out?
- does the patient have PEM.
- what is the type of onset that precipitated illness?

And in terms of action checklist
- sleep issues
- gut issues
- orthostatic issues
- work related issues

One thing to remember is that at least in Canada, one GP may only have one or 2 pt with ME in their practice.