Yeah. That’s my impression from the other side.
I object to these forms on principle. As an advocacy tool I don’t see a value I do see a deficit.
As a clinical tool such forms are rather insulting. Stop making us work for you healthcare professionals, we’ve done this for decades and here we still are with no gold but fools gold. It’s pretty I get that but it can’t be used medically as far as I’m aware.
HCPs love a document to reference but as far as I can see this is just another way to distance themselves from providing…, I’m going there…, ‘personalised care’.
That’s a political thing that the NHS needs to do now that there is a false austerity, passed down from government, making sure there is insufficient funds for actual Dr to Patient care. But I don’t think charities need to involve themselves with support for such things as will disadvantage patients by existing.bThe phrase…”in collaboration with patient representatives” has been used to validate many a valueless (to the patient) document or practice.
I understand the stakes are different but it reminds me of when Action for ME paid for participation in PACE trial so that they could “be in the room” as it was going to happen anyway.
To be called upon to fill out such forms is something awful. I will have to work on my answers using mental energy. It will be hit or miss whether I am capable of accurate reporting on a form with off the peg questions. But it doesn’t matter because whatever answer they get they will fit it into their own pre-existing ideological framework which will almost certainly be to a patients disadvantage. A dehumanising experience.
But all this labour, extracted from me that the department will then use as evidence of them having provided ‘assessment and evaluation’ if I hang around in the system long enough it can also stand in for ‘supportive treatment’ or ‘ongoing monitoring’. **** me if that isn’t a swindle, a con, a manipulation an exploitation.
Hi Ash
Im trying to understand where you are coming from. What is the principle on which you object to 'these forms'? As I’ve said before the aim of the PASS and the other PROMs in the clinical assessment toolkit is to support the clinical assessment process (as it says on the tin). There has never been any mention or consideration of it being used as an advocacy tool (whatever that is) so I don’t expect it would be very useful as such, either.
I am baffled how one can find being asked about the features and nature of the difficulties caused by one’s illness is insulting. Are you considering the fact that health care professionals ask PwME to answer questions about their illness and the effect it has on them insulting or ‘doing the HCPs work for them’? Really? How else do you expect someone to gather that information?
I’m afraid you have lost me with the fool’s gold bit.
Yes, HCPs use documents, take notes, keep records. It is a fundamental part of practice, and they would be struck off if they didn’t.
Do really you think that HCPs should not document the patients’ problems, or record their assessments, treatments or outcomes? Using PROMs, such as the PASS is a way to (relatively) quickly easily (for patient and professional) to make that assessment and record the findings. It helps to decide what treatment to offer and how to provide it, so to use your phraseology – it brings the personalised care closer rather than further away. Why do you feel it is used to distance the patient from the professional? Can you give an example. I am really struggling to understand the point that you are making
Im afraid you’ve lost me on the ‘false austerity’ bit: the austerity/lack of funding in the NHS is very real, but I fail to see how it relates to this project to develop an assessment of PEM. You are, of course, entitled to your opinion about how ME charities should spend their money, but how do you think PwME will be disadvantaged by completing the assessments? My work, with in other chronic disabling conditions shows that they can be rather helpful to both patient and professionals, by facilitating understanding of the patients’ difficulties; aiding communication; and supporting decision-making. In what way is that a disadvantage?
I register your cynicism about our collaboration with PwME (I don’t use the phrase patients, as few of us are patients) and clinicians, and probably most other things too. All I can do it assure you that this project is led by people with ME, delivered by PwME, and informed by PwME at every stage. The advisory groups have contributed to every stage of the project and their input, plus that of the participants who have given their feedback has been invaluable in shaping the running of the project and the PROMS that will be the final outputs. I realise there will always be people who prefer to sneer, and deride any efforts to improve things, but webvare giving it our best shot.
The reference to the PACE trial is completely irrelevant, and misdirected.
We recognise that completing the survey can be arduous for some people, which is why we have constructed it so it can be completed in chunks, in the participants’ own time/pace rather than all at one go, made paper copies available for those who cannot use a screen/keyboard, offered completion by phone or video conference for those who can not read/write. We have highlighted that it is fine for someone else to help complete it, or for someone else to do it on your behalf. We have also encouraged participants to contact me if there are any other accommodations that would be helpful. Is there anything else you can suggest that would make it easier, or any other way to collect the information needed, that would be less arduous?
Again, I note your cynicism, and I limited insight into how clinical practice works and health professionals’ motivation. But how do you work out that providing information that enables professionals to better understand what an individual is going through disadvantageous? How is it dehumanising?
The information from a PROM is used, along with the rest of the assessment to identify the patients’ main symptoms, impairments, activity limitations, and in conjunction with the patient, decide their priorities and goals and devise a treatment plan. That is the point and process of clinical assessment. The effect of the treatment plan needs to be evaluated and monitored – to see if it working and thus whether to continue to whether to change tack. And monitoring is needed to check how the effects of any treatment, and the patients’ status in terms of the effects of their illness is going over the longer term. I fail to see in what way it is manipulative or exploitative, let alone a con or swindle. It is, in fact, the way in which clinical practice for chronic disabling conditions works the world over, and a professional requirement to do so, professionals would be struck off it they didn’t do it.
