I can't help as I'm reading through this, and at the same time enough of these papers that often end up being switch and bait claiming to be about tackling frequent attenders, but end up being a vehicle instead for 'pathwaying out anyone with MUS' (start off claiming to look at frequent attenders, which are a whole list of demographics not including MUS, to then the author suggesting basically people who would be dumped under 'MUS' type conditions are the 'ones that can be tackled) to wonder what part that 'culture' or active initiatives to pathway that might have had.
I also can't help but feeling that a lot of staff might have had training to 'identify' based on fuzzy descriptions of MUS or functional to be put onto 'long term conditions' pathways that are biopsychosocial and been taught to intervene to do so. And that as 'CFS' or 'chronic fatigue' is the flagship of MUS, then without active training to tell people this no longer sits under that pathway even if they've been trained in exactly the symptoms being red flags then all these extra 'helpful' loops start coming in. There is potentially so much that has been taken into the 'general' from the CFS-specific that those 'general' need to be identified and sorted too, along with their impact.
I'm struggling to make this either short or well-brought together, but I can see how initiatives under the guise of 'tackling frequent attenders' actually were actively just training 'MUS - spotting' and culture change to make sure that noone made these things worse.
It's long but I've tried to break it up by gap between each paper, and use bold for the odd point to help with scanning through.
Each time I read through a new one I spot a different pattern or issue. This time one thing I noted was them suggesting targeting different staff groups to operationalise this (one nursing should oversee, one senior docs, one liaison psych, last one just says ED is a good place to capture MUS and as its 2016 seems to be the initial one without the detailed 'how to')
The papers or initiatives often state that their 'aim is to tackle and change culture, and create new pathways [out of the system]' potentially ring slight bells too. I note even today most don't bother to think they need to differentiate 'CFS' from FM or anything else, and even the better ones still think they are pain and fatigue they just use a few different buzzwords. So back in 2021 when there was a lot of backlash on the guideline, and MUS culture (and likely training - which seems to amount to in the case of hospitals in a lot of these documents be: 'they are in the wrong place' - in a lot of places) had been well-embedded.
Particularly when I read that Exeter were implementing a CQUIN in 2017-18 year for this sort of thing (more detail further down), based on the West Middlesex-based research (based on 7 patients fished out in the end). These types of pieces of research often seem to be fishing expeditions in the end rather than proper analyses looking at who the
most frequent attenders are and then coming up with solutions for
them, but looking through the list of frequent attenders for themes that ally with what they want to offer/their area.
But the last one from 2016 seems a starting point for this as it suggests 45% are MUS and it costs £3Bn a year.
If I point to for example Jo Daniel's 2018 one on chronic pain':
10.1177_2049463717720635.pdf (nih.gov)
Without the appropriate referral pathways indicated in the literature (e.g. for primary care input, and homogeneous urgent care clinics for pain, and specific chronic conditions8,12,25,27), patients will re-present at the ED with a perceived ‘medical emergency’, especially when there is a sense of ‘loss of control’,5,6,28 or an expectation of receiving appropriate treatment. This was evident in our findings that staff reported current systems as ineffective at meeting the needs of FAs. This contributed to staff anxieties around missing something serious, and emphasised a ‘better safe than sorry’ mentality towards treatment (thus reinforcing a sense of need to attend ED when in pain).
A clear policy appropriate to clinical need would also discourage a ‘better safe than sorry’ culture
It is recommended that the FA policy is developed in consultation with ED staff, management, psychology, pain clinicians and patient representative(s) to ensure a protocol appropriate to need. The continued implementation may be overseen by nursing staff assuming responsibility for FAs
The FA policy should cover the following aspects: care pathways, care plans, the use of screening tools and the provision of information/education.
Which is where this part on page 9-10 makes me think that these tools, certainly the later boxes - like as well as using Liaison Psychiatry having short screening questionnaires in the ED - might move from being about anything to do with a database of frequent attenders, or 'we've seen this person a few times' to 'preventative for this type who becomes a frequent attender'.
eg under the pathways one:
Yet many of these are FAs with unexplained symptoms, long-term conditions or undetected mental health problems (e.g. anxiety/depression) who continue to use the ED as part of their own crisis self-management. A clear care pathway would increase the likelihood of better meeting clinical need and subsequently reduce inappropriate use of health services.
under staff support:
Promoting staff confidence in dealing with FAs would benefit both staff and patients. Staff support should be multi-level, including the successful implementation of new policies or care pathways, basic level mental health screening training, consultation with psychology for more regular organised supervision to discuss particularly difficult or complex cases.
which to me indicates training people into being confident to tell the person it isn't something bad and 'they just need a confident reassurance it is nothing and doesn't need to be investigated' (by someone senior if necessary), more 'just in case' investigations will apparently just increase their anxiety. In conclusion: "This can potentially result in inaccurately targeted treatments that are ineffective or unnecessary at best, and maintaining the problem at worst."
I can see how this training could be extensive to a lot of staff by the para above.
the screening tools one is to do short surveys on anxiety and depression to inform care plans (and I suspect pathways they get sent on). Of course the issue with the short-form survey, particularly out-of-context of a GP relationship is that for ME/CFS the psych designers refused to calibrate it for an illness they refuse to understand that happens to have increased exhaustion etc so someone saying they are tired for example gets 'misinterpreted' by the questionnaires.
The section discharge plans makes me realise how if misimplemented the impact could be wide-ranging to affect other services now:
This would state the discharge diagnosis, in what case the patient should return and what services would be appropriate to this need. To be successful, these recommendations would need to be implemented in a systematic way and include ‘joined up’ working with other relevant agencies
All based on a rushed 'whatever you do don't be 'better safe than sorry' as that will encourage them' approach using 'short psych surveys' with a lot of flags in the training suggesting a lot of those in this category will have 'certain kinds of symptoms'.
It is interesting that this one from Jo Daniels seems to at various points suggest this is
best implemented by the nursing staff getting involved/overseeing.
Whereas I think the West Middlesex one (that is referenced on the CQUIN doc) :
Frequent attendances to a London emergency department: a service improvement project embedding mental health into the team (tandfonline.com) emphasised
The difference with our model was the em-bedding into the teams of liaison psychiatry clin-icians who work at the interface between physical and mental health. We found that having thisexpertise was a key factor in ensuring that themental health component did not go unrecognised or untreated. '
Their assessment process was to have an ED doctor undertake a biomedical assessment, then Liaison psych undertake a biopsychosocial assessment and use that to draw up a care plan. if the patient wasn't able to be involved in that it would be shared with them at the earliest point. this was then to be attached to their file to help any other agencies with their decision-making.
In its 'why this matters to us' section at the very start of the paper:
We wanted to find a way to identify the people who might benefit from a more proactive approach in which we could ‘go upstream’ preventing deterioration by detecting and treating early and by taking the psychosocial elements into account too.
Their key messages (at start of paper in a banner box) included:
- Episodic, reactive care is not appropriate for people with multi-morbid long-term conditions.Proactive care, which takes a longitudinal view of the person’s issues, is required to ensure that people get the right care in the right setting..
- A key component of our work involved indi-vidualised case management aiming to provide integrated care.
But I wonder whether the issue is that potentially this is operating one-way for 'MUS' because of the assumptions associated with it ie if a GP referred to hospital because of something acute to do with the LTC, is said person getting stuck continually in a 'triage the LTC' loop? PLus of course let's not kid ourselves, the people who wrote this were talking about MUS, which was invented as a box primarily to chuck those with CFS deep into. SO the 'headline condition' of these initiatives they'd been trained in to 'save the crisis that was overwhelming hospitals'
This paper seems to be explicitly referenced in the middle of the document of the CQUIN from the college of emergency medicine (not just in the references at the end):
Frequent_Attenders_in_the_ED_Aug2017.pdf (rcem.ac.uk) that seems to have been used by Exeter in 2017-18:
Royal_Devon_and_Exeter_NHS_Foundation_Trust_Annual_Report_and_Accounts_2017-18.pdf (england.nhs.uk)
THis third paper suggests that it should be
senior clinicians this time 'getting involved'
includes the following on page 6:
Patients who attend with Medically Unexplained Symptoms make up quite a large part of the Frequent Attender Population. ................. Junior clinicians however seeing these patients are more likely to request more tests and make referrals to make sure they do not miss a treatable condition. This approach is likely to encourage the patient to seek more tests and diagnoses.
It is helpful if these patients are identified as patients with Medically Unexplained Symptoms and clinicians focus on symptom management rather than diagnosis. Senior clinicians should be involved with these patients. A helpful approach is to acknowledge to the patient that their symptoms are definitely real and not imagined and can be due to changes in physiological pathways not actual disease.
also mentioned here:
https://www.s4me.info/threads/financial-outcome-measure.39312/page-2#post-543110
And the following 'selling the need for tackling MUS' on page 3:
The population of patients who are frequent attenders is heterogenous. A UK ED study showed that 65% had Mental Health symptoms, 15% had significant alcohol problems, and 45% had Medically Unexplained symptoms.
vi Those with chronic mental health problems combined with social problems and alcohol tend to make up the very high frequency patients.
The reference vi which was apparently that UK ED study was that showed 45% MUS, and it's this one from 2016:
Designing services for frequent attenders to the emergency department: a characterisation of this population to inform service design - ScienceDirect originally in the Royal College of Physician's journal.
I'm wondering whether this is near the start of where the 'initiative' began for all these papers, given it references MUS costing £3Bn a year. And states ED as the hub to fish them out, and profiles MUS as being 'young people of working age' and lists a number of somatic and functional cliche terms/'symptoms'.
The methods notes "The research was carried out under the auspices of the National Institute for Health Research funded Collaborations for Leadership in Applied Health Research and Care East of England." which I assume means it carried some weight for that.
the study design notes it's a retrospective study of 100 patients' case notes. But uses pretty strong recommending language, which I assume must be due to the funding/backing to do such research.
and (worrying to me as a marketer):
These results were then augmented to create personas. Personas are a service design tool in which fictional characters are created to represent the different users that might use a product, in this case healthcare provision in the ED. We used previous research findings on frequent attenders to build the characteristics of the persona.
16,
17 Personas play an important role in creating a shared and persistent view of the user, which can be referred to when making design decisions.
and under 'stage 2' of this, after they noted they reduced the level/bar of number of visits required to be classed as a frequent attender, there is:
The criterion-based review included assessing demographic details, diagnosis and reason for latest ED attendance, number of attendances to the ED per year, number of specialty outpatient appointments attended, invasive tests and whether there had been at least one mention in the notes of a clinical impression of medically unexplained symptoms (MUS). MUS are defined as physical symptoms, which are inadequately explained, or not at all, by somatic disease.
18,19 .........Common symptoms include chest, abdominal or
back pain,
tiredness,
dizziness,
headache, ankle swelling, shortness of breath, insomnia and numbness.20–22
MUS are estimated to pose a significant financial cost; one study estimated the cost to the NHS as £3 billion per year.22
a later para labelled 'medically unexplained symptoms' (straight after the 'personas' para) makes a point of noting this can be
This included a clinical diagnosis of any symptom recorded by clinicians in the medical notes as lacking physical or test correlates. For example, patients were described on occasion as having MUS
per se but they were also reported to have
‘functional somatic syndromes,’ such as chronic fatigue, non-cardiac
chest pain and non-epileptic seizures. Common symptoms ...... The mean age of patients with MUS was 36.8 years. MUS were associated significantly with a younger age (p<0.001) but not with gender (p>0.05).
they note the gender not being female is unusual but might be due to them focusing not on the most extreme frequent attenders, or not including primary care.
In the Discussion, despite the paper supposed to be about frequent attenders, it glosses over this in the first few lines with mutterings about being heterogenous and 'no one size fits all' until it gets to the following:
We also noted that among the subgroup of moderate frequent attenders, some patients have medically ‘unexplained’ symptoms....
5
And here is the 'let's fish for them' next para:
It appears that the ED is a useful hub for identifying patients suffering with MUS. ........................
20,
22
..............Our findings are also contrary to previous research findings that suggested
somatisation in the ED represent only a small group of frequent attenders and are not more common than in ‘routine attenders’.
25 There are a number of possible explanations to this anomaly. It might be that, as services have changed, those who attended primary care in the past are now attending the EDs instead.
Integrating services for MUS at the ED interface may be useful to capture this patient population.
............
.......
We believe this will work best as an age-defined pathway focused on adults of working age (eg 16–65).