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 @ gmail.com (without the spaces).