Occupational therapy and ME/CFS

[Kitty]

How to manage post-viral fatigue after COVID-19

In my experience of NHS treatment, OTs are the only healthcare professionals who understand how to deal with fatigue. They also know that people's natural response to post-viral illness is not to become fearful of activity, but quite the opposite – they always try to do too much too soon.

I've long wondered why their training seems to differ so much from every other type of practitioner. Or maybe they just apply common sense and listen to patients?

 

[Trish]

In my experience of NHS treatment, OTs are the only healthcare professionals who understand how to deal with fatigue. They also know that people's natural response to post-viral illness is not to become fearful of activity, but quite the opposite – they always try to do too much too soon.

Not my experience, I'm afraid. Superficially good understanding and using all the 'right' words, but when it came to the crunch, the version of 'pacing' and understanding of what people with ME can do was just another version of GET lite. There was the same mindset as the GET manuals - find your baseline then start adding activities.

 

[Jonathan Edwards]

I've long wondered why their training seems to differ so much from every other type of practitioner. Or maybe they just apply common sense and listen to patients?

My guess is that occupational therapy training is not based on phoney theory. So it gets based on practicality.

The other key difference is that whereas physiotherapy and psychotherapy are professions tied to delivering a particular modality of care, occupational therapy stopped being that in about 1970. The original purpose of keeping war injury victims and chronic mental health patients occupied with basket weaving was replaced by doing whatever helped people manage - presumably because the OT was the spare person who could be got to deal with that while the basket weaving continued. As a result OTs became seriously useful and important people. There was a phase in rheumatology when they got obsessed with 'joint protection' theory but even that is now irrelevant.

So occupational therapy, like nursing and medicine has become a profession that has a responsibility to offer whatever might seem appropriate, rather than to provide a particular modality, regardless of whether the patient needs it. The latter is at the heart of the NICE's current problems.

 

[Trish]

The other key difference is that whereas physiotherapy and psychotherapy are professions tied to delivering a particular modality of care, occupational therapy stopped being that in about 1970

So occupational therapy, like nursing and medicine has become a profession that has a responsibility to offer whatever might seem appropriate, rather than to provide a particular modality, regardless of whether the patient needs it. The latter is at the heart of the NICE's current problems.

Our local ME service is run by OT's. Very nice, kind, supportive people who seemed to see ME as something a bit akin to burnout, from my memory of our interaction with them about a decade ago. They did grasp the concept that physical, cognitive, emotional and social activity all need to be taken into account.

So they advised people to cut back activity and rest more at the start, with a lot of emphasis on detailed activity diaries, but little idea what to do with them except to say, OK so that's your baseline, now what activity are you planning to add next week, and what extra one the week after to build you back to normal... And here's a nice relaxation CD for you to try.

My main problem with them was that they had no idea what sort of 'therapy' might be valid and useful for pwME, so got sucked in to the lightning process and another very dodgy sounding 'therapy' that they were inflicting on patients, including quite severe ones. And they are heavily involved in BACME and being influenced by the BPS stuff.

And they had nothing to do with the other sort of OT's who sort out home adaptations and mobility aids.

I think they are dangerous for people with ME, because they don't have sufficient foundation in science or medicine to have any clue whether what they are advising patients has any foundation and whether they might be doing harm.

 

[Jonathan Edwards]

And they had nothing to do with the other sort of OT's who sort out home adaptations and mobility aids.

Well we need the other sort then !

 

[Kitty]

So they advised people to cut back activity and rest more at the start, with a lot of emphasis on detailed activity diaries, but little idea what to do with them except to say, OK so that's your baseline, now what activity are you planning to add next week, and what extra one the week after to build you back to normal... And here's a nice relaxation CD for you to try.

Gosh, that's horrible – I've never had it from any of the whole bevy of 'em that I've worked with! They were all focused on how to do what you need to do without making yourself worse, and if it's still too much, question whether those things really are essential.

They persuaded me after a relapse that I really don't need to shower every day, and that a carpet left un-hoovered is a sign of common sense, not laziness. Same with work, they encouraged me to ask for help, say No, and recognise that I always try to do too much. (There was nothing I didn't already know, of course, but patients who've had to endure universally negative attitudes to their illness sometimes need to be given permission to look after themselves.)

I've been supported by OTs for about 18 years now in one way and another. I had a session with one after a particularly hideous encounter with a rheumatologist, who insisted that ME and fibromyalgia are the same thing and refused to take the latter off my medical record, even though I've never been assessed for or diagnosed with it. I was in tears at the contrast in approach.

 

[Trish]

I suspect it's not so much the training as the individual. And what particular other therapists the talk to. The particular one I had experience with was very involved in BACME.

 

[Kitty]

The particular one I had experience with was very involved in BACME.

 

[Invisible Woman]

I'm with @Trish on this one I'm afraid. While there are always individuals out there who have empathy, are observant, use common sense and feel some personal responsibility for their actions you can't guarantee you'll be meeting on of those.

I have had contact with OTs on behalf of disabled relatives. Like every other profession some are good and some are bad. I even found myself on a course with one many years ago. The week after she had a meeting with an employee at the firm she worked for - the person had ME and she was all set to push for GET & tell the employer that's what was needed. I gave her a crash course in why that was a bad idea. Fair play to her, she was interested and asked lots of questions.

Unlike my own employer's OT who, despite my consultant clearly writing in his report GET was contraindicated, nonetheless confidently asserted that I should undergo it. Gave me yet another battle to fight.

Unless and until they receive decent education on ME, I wouldn't automatically trust them.

 

[Jonathan Edwards]

I think the employment context may be relevant. I have come across OTs in three contexts. The first was rheumatoloid and other forms of arthritis, where OTs dealt with wheelchairs, bath aids, stair lifts and certain types of hand splint. They were a sensible lot. The second was general medical wards, where they did the same. But the third was when I did my training in 'rehabilitation' at a rehabilitation centre in Camden. The OTs there were messianic and bossy and accused patients of being malingerers. I think the difference was that at the rehab centre the OTs were in the same boat as the physios. They had fixed time sessions during the week for each patient to provide 'therapy'. They were tied to being therapists.

 

[JemPD]

I think the employment context may be relevant. I have come across OTs in three contexts. The first was rheumatoloid and other forms of arthritis, where OTs dealt with wheelchairs, bath aids, stair lifts and certain types of hand splint. They were a sensible lot. The second was general medical wards, where they did the same. But the third was when I did my training in 'rehabilitation' at a rehabilitation centre in Camden. The OTs there were messianic and bossy and accused patients of being malingerers. I think the difference was that at the rehab centre the OTs were in the same boat as the physios. They had fixed time sessions during the week for each patient to provide 'therapy'. They were tied to being therapists.

My neuro, who thinks 'CFS' is 'functional' but is sympathetic, once asked me if i would like to see an OT... afeared of the 'rehab' kind that you describe i turned him down saying that after 20 yrs i'd pretty much got all the aids i need. But actually i would like some advice on aids etc, just not from someone who thinks i can do more than i actually can.
I wonder if you would know what to ask for - ie what i might be able to say to ask for the good helpful kind.

 

[Trish]

I have heard from others that you can ask for an OT assessment for aids etc. Maybe via your GP practice.

 

[Jonathan Edwards]

When I were proper doctor years ago (OK 10) there was a thing called a home ADL assessment. As Trish says GPs must be able to request it. It is simply a way of telling how well people can cope and what might help.

I suppose you might get a bossy type of OT but I think it might be worth trying.

 

[JemPD]

My fear with an unhelpful bossy OT is that if they did an unhelpful report it could have very bad consequences for PIP benefit applications. I dont know my GP that well & need letters from her as medical evidence. If the OT comes along and writes a report saying that i could do more than i can, or could if i tried harder/increased gradually etc etc etc. Then she will likely doubt my word (or at least think that i could do more if i just tried harder/tried that nice CFS clinic to rehabilitate you) & if DWP contact anyone for more evidence (which they sometimes do), then GP is likely to go with what OT has said as they will have been in my house with me.

So the consequences of getting a bad OT could be potentially serious. So i certainly wouldn't ask GP, but i could bring it up with Neuro again nxt July - but again if i got referred to the rehab type as @Trish described above i would be nervous that they would write an unhelpful report that would pollute what is a supportive but fragile relationship.

I think on the whole from what i can tell from reading of others' experiences, the (usually healthy) movement towards 'reablement' rather than just accepting that you are unable to do something they want to help people achieve their goals etc. is slowly taking over & seems to be cultural within a location/dept.

I know i have a friend who is a retired OT & she said she mentioned ME to a couple of her previous colleagues who work in the community, & they all said things that made me shudder. So it makes me really reluctant.

 

[Kitty]

In some areas, you self-refer – that's certainly true in our part of the midlands. You ring a central contact number that's published online, talk to someone about what type of assessment you need, and they arrange the appointment. You may be able to find this out from information published locally online.

It might be a bit more complicated than usual to get an appointment at the moment. It's difficult to do a meaningful assessment unless the OT can visit to understand your home environment, find out what activities are most difficult, and see to what extent you're able to move around.

One tip I'd offer is don't be too hesitant about accepting offers of things you don't feel you really need just now. I once rang them to get my wooden wheelchair ramp replaced and ended up with a stair lift and a wet room as well, neither of which I thought were fully justified at the time. The difference they made was extraordinary, though, and even though I tried not to use the stair lift if possible to preserve function in my legs, it was a godsend on the days when I really did need it. The OTs were also planning ahead; I was in my late 50s, so my mobility is more likely to decline over time than it is to improve, and the team was acutely aware there's no guarantee that funding which is available now will be there in the future.

ETA: cross-posted! The OTs in the local adaptations team are only like to do that kind of work, rather than rehab – with ageing and increasingly frail populations, they have plenty of people to look after without needing to work across different types of service.

It might be worth trying to get some local info on how well your service works, @JemPD. Ours is fab, and so is the one in the area where my relatives live, but I've occasionally heard reports of councils who seem to make it their business to fend off as many referrals as possible (which is bizarre because major adaptations are funded by central government, and this includes paying the council a fee for project managing them – but so much depends on organisational culture).

 

[Alis]

my experience of OTs has been mostly good. I've seen 4 over the past decade.
two were very good, helpful and supportive.
one was pretty bad.
one , who I saw a lot of when I was in hospital ,was wonderful. She was so supportive.
She made a huge difference to my 2 week hospital stay. [amongst other things intervening with the nurses at one point ]. making it a more bearable.

 

[lunarainbows]

The OTs at my local council / social services do 2 things, either:

1) “Re-enablement”. This seems to be a new thing in which for people who are disabled, they get them doing things even if they can’t actually do those things. The OTs at my local council love this and I know one person who only got offered this

2) (back when I was housebound but not only in bed), get you a swinging bath stool thing which topples over itself, when you point out it’s dangerous they come and take it back. When you say you can’t sit up properly they give you a perching stool. And then when you say you’re too ill to see them they discharge you.

I then had a good OT which I had to pay for, who was appalled at my housing situation, wrote an excellent report and told the council I needed Re housing as soon as possible, similar to what Shelter etc said. Did the council listen? No. Still here over a year (or actually over a year and a half) later. I wish my council had good OTs but I think they really don’t.

none have offered me any kind of energy management plan etc.

 

[Alis]

The OTs at my local council / social services do 2 things, either:

1) “Re-enablement”. This seems to be a new thing in which for people who are disabled, they get them doing things even if they can’t actually do those things. The OTs at my local council love this and I know one person who only got offered this

2) (back when I was housebound but not only in bed), get you a swinging bath stool thing which topples over itself, when you point out it’s dangerous they come and take it back. When you say you can’t sit up properly they give you a perching stool. And then when you say you’re too ill to see them they discharge you.

I then had a good OT which I had to pay for, who was appalled at my housing situation, wrote an excellent report and told the council I needed Re housing as soon as possible, similar to what Shelter etc said. Did the council listen? No. Still here over a year (or actually over a year and a half) later. I wish my council had good OTs but I think they really don’t.

none have offered me any kind of energy management plan etc.

the one OT I had who was awful was one I had to see for an assessment of my housing situation. but her report did help .despite her attitude . as I was having to use a wheelchair around the flat and the hall was very narrow and it was impossible to manoeuvre the electric wheelchair around .
and into the bathroom.
and the flat had three steps down.
she did suggest ,amongst other things , that I move into a high rise block of flats.

eta that was quite a few years ago .the social housing situation [accessibility and availability ] has deteriorated even more since then.it is dire now.

 

[Kitty]

The various OTs I've worked with have been helpful; I probably ought to add, though, that none of them have made any progress at all on trackpad use, when you have a cat that insists on head-butting and squirming her way underneath your arm so you have to work with your elbow stuck out at a funny angle...

 

[Invisible Woman]

My fear with an unhelpful bossy OT is that if they did an unhelpful report it could have very bad consequences for PIP benefit applications. I dont know my GP that well & need letters from her as medical evidence. If the OT comes along and writes a report saying that i could do more than i can, or could if i tried harder/increased gradually etc etc etc. Then she will likely doubt my word (or at least think that i could do more if i just tried harder/tried that nice CFS clinic to rehabilitate you) & if DWP contact anyone for more evidence (which they sometimes do), then GP is likely to go with what OT has said as they will have been in my house with me.

That right there sums up the difficulty of almost every interaction with authority or agencies that are supposed to help when you have ME.

I have family members with disabilities and long term health conditions. The worst that happens if they ask for something is they don't get it. It never crosses their minds that simply by asking, what support they already have could be removed because it probably wouldn't.

I guess it's down to what's the most pressing need and how much risk you're comfortable with.

If there is a local ME group, I wonder if it's worth getting in touch and asking if their members have any knowledge or experience of local OTs.

I think you're right to be cautious. I heard of one individual who was assessed by their OT and had aids installed in their home only to have the council remove them later because she had a diagnosis of ME. Devastating as it meant her husband had to give up his job to care for her full time as a result. They were on a very low income so couldn't afford to buy and fit the aids themselves.