Monday, 28 January 2013

POTS management program (UK)

On Friday I met up with an enthusiastic physiotherapist, blessed with plenty of common sense, who is working to set up a POTS management clinic.

An exercise based program based on the fact that your symptoms are real and should be respected - but also based on the fact that through management (diet, lifestyle, exercise etc) symptoms can be seriously reduced.

We talked about 'prompt' symptoms - ones which are fairly mild, but are an early warning that POTS is escalating. For me, taking evasive action at this stage can totally avoid major crashes - like realising that my hands are frozen - so I'd better walk around and get my muscles working before continuing this post!!
And all sorts - from diet to the psychological effect of misdiagnosis and disbelief. 
The basic plan is to have an initial consultation, to help therapist and patient get to know each other, followed by several one-to-one sessions to start trying exercises, learning 'prompt symptoms', etc. Then having group sessions.
The program hopes to include exercise (starting with horizontal core stability work, then pilates/gym ball work, moving on to cardio-vascular as appropriate), relaxation, pacing, as well as trying to help people improve their ability to cope with their POTS symptoms in a positive and constructive way. (Let's face it, POTS is tough and if we are honest with ourselves I bet that for most of us there are things in our attitude which we could do with a bit of help improving). 
She is still planning the format of the group sessions - concentrating just after exercising is not generally a POTS strong point, but neither is exercising when mentally exhausted from concentrating!
It was very refreshing to talk to a physio who appreciated that 'cycling til you collapse' was not a good strategy, but that listening to and working with the patient was the way forward. 
But whatever the format it will be a practical and supportive course, where POTS is normal so randomly lying down, snacking frequently on salt, putting ones feet up and other typical POTSy behaviour will be encouraged rather than frowned upon. Which I think is awesome.
It will be in Bristol. 
Once a week.
Hopefully starting in May.
Because there isn't enough of an evidence base, the NHS isn't funding it (at least, not yet...) so she is having to hire a venue etc. This means that at this stage it could cost up to £60/hour for an individual session - but less for the group sessions. More than I'd like, but it could be a very worth while investment.
Having said that, if an initial run proves successful for the individuals involved, getting it available on the NHS will become a more realistic possibility. These things take time.
In aid of NHS persuasion, they need to be able to measure 'outcomes' to show the course's effect. So, what do you think would be a good measure of improvement? How would you measure your POTS management improvement? (beyond the basic heart rate measurements) (I will feed any suggestions/comments back to her)

The physiotherapist, Penny, can be contacted on email address papillonphysio @ (without the spaces).


  1. I think the most "basic" would be "how many times do I inadvertently end up on my arse/face/the floor generally?"

    I've learned recently that not everyone repeatedly (has to) clench and unclench their stomach muscles before/while standing up. I've also learned recently that if I don't do that, I *will* faceplant/get "soggy" legs etc. I really must take that to the doctor...

    [Is this POTS thing going to be at Frenchay, Bristol, and run by the same people that do the multi-disciplinary CFS/ME/Fibro & pain management stuff? If so, yay! I'm due to see them in March anyway! If not, how can I get details - this is something that I would deffo budget from my DLA for]

    1. The physio is Penny, this treatment won't be at Frenchay, but at the Spire hospital/The Glen. the'collapse frequency' sounds a good indicator :)

      If you send your email address to me (via DM on twitter/FB private message or email) I will forward it to the physio, then she can send you more information directly

    2. I have messaged you on FB. I see my pain consultant at The Spire (yay for BUPA through work!)

  2. Hi , I used to live in Bristol whilst doing my music degree , but had to move back home because of my POTS. However my aim is to move back to Bristol, and if I could it would be so great to know there was going to be some kind of treatment clinic set up . I have had POTS since approx 2005 but wasn't diagnosed till 2008/9. I have worked incredibly hard on increasing activity, but am hypermobile and no matter what I do I do not seem to gain any muscle/strength. Would it be possible to have the contact details of the person setting this up? xx

    1. Sorry for the delay in responding - I had some time off. You can contact the physiotherapist on email address papillonphysio @ (without the spaces)

  3. What about measuring heart rate each week of the course, both lying, sitting, standing? Same for bp? That's what Levine did with the Texas POTS study I think. Quantifiable, verifiable and objectively measurable outputs would help with the case for NHS funding. i.e- proof of improvement. It would be difficult to prove the benefits of a course if mobility and hr/bp levels didn't improve afterwards.

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