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The Neurological Alliance: Patient experience survey
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Invisible Woman
Senior Member (Voting Rights)
I had a brief look at the first few questions. The questions are asked in such a way that the survey cannot capture my experiences with neurology.
It seems to assume that, if you saw a neurologist, they played some part in diagnosis. Not in my case.
Also asked about what information you were given, if any - were you pointed in the direction of a specific charity, for example. No option to say you were told to stay away from all charities and support groups.
It seems to assume that, if you saw a neurologist, they played some part in diagnosis. Not in my case.
Also asked about what information you were given, if any - were you pointed in the direction of a specific charity, for example. No option to say you were told to stay away from all charities and support groups.
Andy
Retired committee member
There is a chance to give feedback at the end of the survey. I used this chance to point out that ME patients rarely have any access to a neurologist, with diagnosis often being by GP. If you wanted to complete the rest you could use that opportunity to give them these points?
I have had a stab at answering the questions. And made points in white space about lack of support for PWME.
I don’t know if others agree but I felt I wanted to make the point that people with severe ME are either abandoned or often worse where they are “treated” by specialists are at risk of rediagnosis with mental illnesses and detention against their will.
I don’t know if others agree but I felt I wanted to make the point that people with severe ME are either abandoned or often worse where they are “treated” by specialists are at risk of rediagnosis with mental illnesses and detention against their will.
Andy
Retired committee member
The results of this survey have been released, https://www.neural.org.uk/resource_library/neuro-patience/
From the technical report, https://www.neural.org.uk/wp-content/uploads/2019/07/Neuro-Patience-Techincal-Report.pdf, also available at the above link:
Of 10,339 respondents, 488 listed ME/CFS as a condition they had.
On p.45, ME/CFS was ranked as having the most severe effect on quality of life.
On p. 47, ME/CFS was ranked as having the most severe affect on the respondents’ ability to carry out day to day activities.
On p. 48, ME/CFS ranked 5th for which condition causes the most significant levels of pain and discomfort.
On p. 49, ME/CFS ranked as least positively on how each respondent rated the overall health care they are receiving.
From the technical report, https://www.neural.org.uk/wp-content/uploads/2019/07/Neuro-Patience-Techincal-Report.pdf, also available at the above link:
Of 10,339 respondents, 488 listed ME/CFS as a condition they had.
On p.45, ME/CFS was ranked as having the most severe effect on quality of life.
On p. 47, ME/CFS was ranked as having the most severe affect on the respondents’ ability to carry out day to day activities.
On p. 48, ME/CFS ranked 5th for which condition causes the most significant levels of pain and discomfort.
On p. 49, ME/CFS ranked as least positively on how each respondent rated the overall health care they are receiving.
Andy
Retired committee member
It's our type-A, over-achiever, personalities - we are all winners!
Andy
Retired committee member
To get an overview of the survey results this link, https://www.neural.org.uk/patient-experience-survey/, is better.
rvallee
Senior Member (Voting Rights)
Sounds like something to bring to the NICE committee. This is a huge embarrassment to an institution that elected to continue as-is two years ago. NICE has enabled this disaster while the NHS gave it a boost in exactly the wrong direction. With an obvious, explicit, statement that FND is nothing more than the same hand-wavy "here be dragons" BS with a different bowtie, as is likely to be the response.
The point that the status quo is completely disastrous and needs wholesale change cannot be emphasized enough. As is the contrast between the perception that NICE and NHS hold, in rubber-stamping continuation despite widespread failure. The evidence of the disaster is overwhelming and consistent across multiple independent surveys in several countries. This evidence is also consistent with decades of warnings about what would happen if the psychosocial alternative model were bullied through, again consistent across multiple countries.
The fact that the patient community has been completely shut out of the process plays a big role in this failure. Medicine that explicitly dismisses informed consent and rejects valid complaints is nearly guaranteed to fail.
Video game companies are more responsive to complaints from users than medical institutions are to evidence of catastrophic breakdown of medical care in a patient population. What a mess.
The point that the status quo is completely disastrous and needs wholesale change cannot be emphasized enough. As is the contrast between the perception that NICE and NHS hold, in rubber-stamping continuation despite widespread failure. The evidence of the disaster is overwhelming and consistent across multiple independent surveys in several countries. This evidence is also consistent with decades of warnings about what would happen if the psychosocial alternative model were bullied through, again consistent across multiple countries.
The fact that the patient community has been completely shut out of the process plays a big role in this failure. Medicine that explicitly dismisses informed consent and rejects valid complaints is nearly guaranteed to fail.
Video game companies are more responsive to complaints from users than medical institutions are to evidence of catastrophic breakdown of medical care in a patient population. What a mess.
ME/CFS Skeptic
Senior Member (Voting Rights)
This is interesting.
The report is a large survey of the experiences of people living with a neurological condition in England. They handed out questionnaires in various clinics all over the country and distributed the survey online via The Neurological Alliance’s member organisations. 10.339 patients responded of which 319 reported a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Looking at the data broken down by neurological condition, there seems to be two relevant conclusions.
1) There were 47 different neurological conditions, including Epilepsy, Parkinson’s disease, Tourette syndrome, Myasthenia, Brain tumor, and Guillain-Barré syndrome. When the survey asked: “To what extent does your neurological condition impact your quality of life?” or “To what extent does your neurological condition affect your day to day activities?” ME/CFS stood out as having the worst quality of life. (Note: some diseases clearly have a higher mortality rate, so let’s not make this about which disease or worse than others). I tried to make a graph out of this, because it’s impressive if you see all those horrible neurological conditions listed, with ME/CFS right down at the bottom.
2) Of those 47 neurological conditions, ME/CFS patients were by far the least satisfied with the overall health care they receive. ME/CFS patients reported the worst score in the extent to which social care meets their needs and one of the worst in how their mental health needs are being met. That is quite remarkable given how British care for ME/CFS has focused on targetting psychosocial factors. Something similar is true for patients suffering from a functional neurological disorder. The report explains how such a paradox is possible and it’s worth quoting it in full:
So ME/CFS patients have a clear need for more psychological support but the psychological help they are actually getting is thought to be misjudged and harmful.
I wonder what the NICE Guideline development group would think of this...
@Keela Too @adambeyoncelowe @Jonathan Edwards
The report is a large survey of the experiences of people living with a neurological condition in England. They handed out questionnaires in various clinics all over the country and distributed the survey online via The Neurological Alliance’s member organisations. 10.339 patients responded of which 319 reported a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Looking at the data broken down by neurological condition, there seems to be two relevant conclusions.
1) There were 47 different neurological conditions, including Epilepsy, Parkinson’s disease, Tourette syndrome, Myasthenia, Brain tumor, and Guillain-Barré syndrome. When the survey asked: “To what extent does your neurological condition impact your quality of life?” or “To what extent does your neurological condition affect your day to day activities?” ME/CFS stood out as having the worst quality of life. (Note: some diseases clearly have a higher mortality rate, so let’s not make this about which disease or worse than others). I tried to make a graph out of this, because it’s impressive if you see all those horrible neurological conditions listed, with ME/CFS right down at the bottom.
2) Of those 47 neurological conditions, ME/CFS patients were by far the least satisfied with the overall health care they receive. ME/CFS patients reported the worst score in the extent to which social care meets their needs and one of the worst in how their mental health needs are being met. That is quite remarkable given how British care for ME/CFS has focused on targetting psychosocial factors. Something similar is true for patients suffering from a functional neurological disorder. The report explains how such a paradox is possible and it’s worth quoting it in full:
“people with chronic fatigue syndrome/ME repeatedly report having their symptoms trivialised, and told it is ‘all in the mind’ by medical professionals, particularly neurologists and GPs. Both groups report feeling entirely unsupported by the NHS. This is reinforced by the scores for respondents with functional neurological disorder and ME about how they rate the care and treatment they have received for their condition overall, which were the lowest two scores for any condition groups. So, whilst for most survey respondents there was a clear need for more psychological support, for people with FND and ME, this is clearly tempered – with some even feeling that they psychological ‘help’ they had received was entirely misjudged and caused them harm. The results suggest people with ME and FND need tailored support and have distinct needs which are currently not being served.”
So ME/CFS patients have a clear need for more psychological support but the psychological help they are actually getting is thought to be misjudged and harmful.
I wonder what the NICE Guideline development group would think of this...
@Keela Too @adambeyoncelowe @Jonathan Edwards
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A little odd that out of 10,000+ completed surveys - many done at neurology clinics - not one was listed as a channelopathy, at least not that I found.
It could be they categorized PP patients as a type of muscular dystrophy. My guess would be some of those identified as FND in fact have channelopathies. And then there is "other"...
Of course, it could be that no one with PP responded.
It could be they categorized PP patients as a type of muscular dystrophy. My guess would be some of those identified as FND in fact have channelopathies. And then there is "other"...
Of course, it could be that no one with PP responded.
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rvallee
Senior Member (Voting Rights)
It's pretty clear that this in large part due to the systemic discrimination and disinformation surrounding the disease so it's fair. We do not have the worst disease but we are certainly treated the worst. Even trivial health problems can grow to horrifying ends if nobody cares to fix them. This outcome is not at all surprising.
Which is very significant when it comes to guidelines and recommendations. Most of the negative disease impact is caused by the medical profession itself, because it chooses to deny our very experience as we claim it exists.
A problem left entirely unaddressed, even worse when it is actively sabotaged, will almost always fare worse than a worse problem that is met with sincere and adequate efforts and resources. Most of this abysmal quality of life is a choice and something that can be addressed. I'd estimate that at least half the total disease burden could be relieved by simply ending the policy of denial and taking us off the damn blacklist, with adequate resources finally brought forward.
So it's no surprise that we fare some of the worst, but this is a choice, one in which we have absolutely no say into, a fact that is most definitely a the main cause. The psychosocial ideology is by far the most responsible for this horrible state of affairs. Ending it and admitting it has been a gross mistake would go a long way to fixing things. Unfortunately things are heading exactly the other way with the insane MUS project.
But for now this is the most significant fact: failure is and has long been a choice, most of our suffering mainly the product of deliberate choices made by people with no stake in the matter. We can help fix this, but have to be met halfway to it, rather than being pushed away and mocked and insulted for daring raise the alarm about a disaster impacting millions.
rvallee
Senior Member (Voting Rights)
I would say this is in fact the main cause. It makes as much sense to treat ME with a psychosocial model as it makes to treat a fungal infection with antibiotics. The outcome is entirely predictable and largely a problem of classification.
Though it definitely is wildly ironic. But the outcome should not be surprising to anyone with a modicum of common sense.
adambeyoncelowe
Senior Member (Voting Rights)
Thanks. I've already sent this to the chair. I'm sure it will be useful.
Andy
Retired committee member
To add to the information that Michiel pulled out.
From the policy report, https://www.neural.org.uk/wp-content/uploads/2019/07/neuro-patience-2019-1.pdf
This infographic, at least to me is somewhat confusing
I would guess what we are seeing here is that for "CFS", we rarely get referred to a neurologist, so we appear low in this "number of GP visits before referral" count.
This one, I think, is self-explanatory.
From the policy report, https://www.neural.org.uk/wp-content/uploads/2019/07/neuro-patience-2019-1.pdf
This infographic, at least to me is somewhat confusing
I would guess what we are seeing here is that for "CFS", we rarely get referred to a neurologist, so we appear low in this "number of GP visits before referral" count.
This one, I think, is self-explanatory.
Keela Too
Senior Member (Voting Rights)
Do you mean “Quality of Life” etc on the labels?
“Impact on Quality of Life” suggests ME has lowest impact of all the conditions.
Fascinating graph though. Thanks
ME/CFS Skeptic
Senior Member (Voting Rights)
Yes, It's a bit confusing. I took the wording the report used but they explain in the text:
I took the data from page 45-48 in the technical report and made a graph with it.
ME/CFS Skeptic
Senior Member (Voting Rights)
This is how the questions and use the scoring system (Appendix A, page 60 in the technical report):
So they ask about the impact on quality of life, but a low score means a larger impact on quality of life.
So they ask about the impact on quality of life, but a low score means a larger impact on quality of life.