CHDA training on fluctuating conditions

I will sit down tonight and have a proper read but… initial thoughts:

- I can’t honestly say I’ve seen or heard any suggestion that assessments have improved. If anything, since some face to face stuff has resumed I’d say it has gone backwards. Others will have wider experience than myself on this.

- it does indeed look comprehensive but it also strikes me as something which has been over thought. Is fluctuation really that complex a concept to get your head around?

- the examples are ones I would want to see except, yet again, no sensory example. Apologies if I’ve missed it/them.

- I think it’s underpinned by some key assumptions which are arguably incorrect.

Firstly, I have never come across anyone who doesn’t have a fluctuating condition. Treating it as a difficult and exceptional concept strikes me as unhelpful and inaccurate. 

Secondly, it assumes that conditions and their symptoms are the only things which fluctuate.

In terms of sensory loss then whilst some conditions can be stable for long periods allied for some to sudden periods of deterioration (retinal dystrophies, tinnitus etc.) pretty much every single one varies because of environment. There is mention of environment on what appears to be a slide but it asks “if” there are possible environmental factors which might impact. I would argue that is a misunderstanding of the impact of environmental factors generally (systemic Lupus being an excellent example which they don’t really get to grips with) but more specifically environment is very much the cause of fluctuation as regards almost all sensory loss. It’s not something which “might” impact. More a case of find me a case where it doesn’t.

The slide itself worried me further with its key points around reliability. I think they’re a poor representation of how reliability actually works for large groups of claimants. Once again engagement is about being able to start a chat and not about taking part in an appropriate relationship or knowing (again relevant for sensory loss) that you were in a conversation/relationship in the first place. I can’t remember the last time I had a sight-impaired client who didn’t score 2 or 4 for social engagement. That starts with needing a cue from another person to know that you’re the person being addressed and who it is who is addressing you. The idea that might even be an issue wouldn’t cross your mind on the basis of what’s on that slide about engagement.

Oh, and “good days” and “bad days”. Seriously? Are we still in that world? It’s an awful concept and generally construed by DMs to mean “days on which nowt much is wrong”. Some steering away from that language is definitely needed.

Anyway, good of them to share and I’ll be interested to hear what others have to say.

Have only had a brief skim of this, but I would like to echo the point about good day/bad day being a completely useless notion.  I agree decision makers and assessors seem to think “good day” is shorthand for being in perfectly good health/having no disability.  When someone is managing a chronic health condition then a good day is going to be very much relative to their other days.  For example, for the clients with mental health conditions that I work with, a good day could mean not being in hospital, or not self harming or getting out bed that day.  None of that equals being fit for work.
Another example - whenever I’ve been off sick from work, I’ve always managed to carry out basic self care.  (I don’t have any long term health conditions.)  Most of the clients I work with don’t manage this on a “good day.”  But that would a bad day for me - because I can’t go into work.

Most of what is in this training brief looks pretty sound, and it is welcome that Maximus are asking for feedback, but I have my doubts about its likely effectiveness.

I agree with Mike Hughes that they do seem to be over-thinking the issue. The title refers to “fluctuating conditions” but most of the brief refers to “variability”. I would understand “fluctuating conditions” to refer to conditions where the symptoms change from day to day or week to week basically at random. This seems to me to lie behind the “good day/bad day” dichotomy. “Variability” is a much broader concept, which takes into account environmental factors and the way what a claimant does on one day affects what they can do on another day. What happens on “good” and “bad” days are therefore linked. The brief itself says (slide 12) “the majority of conditions will have variability and indeed it is difficult to think of any condition with no variability at all.” That is one of Mike’s points so it is welcome that that is the approach taken. After all, WCA and PIP are all about the impact on the claimant of their conditions over a period of time.

It seems to me that what this course is really about is approaching the assessment in a way which takes full and proper account of the requirement in the WCA Handbook (p74) that activities have to be completed repeatedly, reliably, and safely. If this was training for PIP assessments I would argue that the trainer should stick closely to the statutory language in PIP regulation 4(2A) , but the WCA Handbook is less precise. Nevertheless I think they could tighten up the language to avoid misapprehensions. On slide 24, for instance, there is a reference to something being done “in a timely manner”. That isn’t the same as doing something in a reasonable time.

There are also repeated references to conclusions having to be “medically reasonable” and “on the balance of probability.” This is in effect saying that an HCP can discount what a claimant says if it doesn’t square with what would be expected from someone with a that specific condition. I’m don’t think this course really helps an HCP to reach that kind of conclusion.

I asked a very experienced trainer to have a look at it. She is not an expert in the subject-matter; I asked her to look at it purely from a training design point of view. Her view is that it crams far too much into a half-day course to be really effective. There is too much of the trainer telling the trainees what to think. Because there is so little time for discussion and questions the key messages are less likely to stick. The role play is a good idea but the effectiveness would be much improved if they did it in trios ie one trainee plays the client, one plays the interviewer, and one observes. The observer will pick up on things that the other two participants will miss. If they made a more thorough job of this training they would succeed in equipping the HCPs much better both to tease out variability and to spot exaggeration.

It’s very prescriptive isn’t it.

It is, and no one reacts well to being force-fed.

Thanks for the comments - very helpful :)

I had a longer read and it didn’t really change my perspective. Fluctuation is a part of all health conditions and the matter is better dealt with through the lens of “reliability”. I will faint the day I read that word in a HCP and probably be equally disoriented the day DWP don’t try to pass that off with the suggestion that it’s inferred in all HCP reports.

Paul’s comment below also resonated.

“There are also repeated references to conclusions having to be “medically reasonable” and “on the balance of probability.” This is in effect saying that an HCP can discount what a claimant says if it doesn’t square with what would be expected from someone with a that specific condition. I’m don’t think this course really helps an HCP to reach that kind of conclusion.”

There are fundamentally problematic contradictions here. On the one hand for a PIP 2 claimants are explicitly asked to not send in leaflets describing their conditions because DWP want to know the specifics of how it impacts them and not about the condition in general. On the other, if those specifics then differ from the general description of a condition you then find yourself being questioned from the off. It’s not confidence inspiring.

I made a couple of IAS contacts thanks to a very rare attendance at the North West Mental Health WR Advisers Group and have now obtained their Condition Insight Report. When you ally the above to that it’s even less of a surprise things go wrong. I looked up one of my eye conditions. It’s not in there. I looked up the other and the info. in question is a decade out of date and riddled with omissions. Issues which would account for 50% of the DL points available to someone with that condition simply weren’t mentioned. There is a basic error in relation to mobility. It’s no wonder I can’t get a HCP or a DM to address sight loss and budgeting and my claimants have to appeal to get unfamiliar routes not just familiar.

If I were a PIP claimant and you then added in that I have one issue which undoubtedly impacts both eye conditions; which you won’t find in any literature, then the approach to fluctuating conditions described here would instantly disbelieve all I have to say because I’m describing something which is not “medically reasonable” i.e. it’s different.

Had feedback meeting with CHDA today so attempted to summarise the points above - thanks very much to everyone who posted