Wessely on air at BBC 4 Radio

[arewenearlythereyet]

Just like to say that when I attended "clinic" in 2014 there was very little choice of constant heart rate monitors that were practical. I was an early adopter (mainly because I'm a bit of a geek) but when I showed them they were receptive. It's easy to bash the clinics but I found the staff there practical and helpful (Cambridgeshire). I think it's a bit tricky for them to "treat" people with what they have available. They were practical enough not to push CBT on me and advise me on lots of things to do with coping, pacing and dealing with my employer including writing them letters etc. The clinic had a specialist Doctor who diagnosed me. It's NICE guidelines that are the problem for me and the lack of adequate research funding into biochemical causes and treatment. I realise that my clinic may have been one of the better ones btw, but they aren't all bad.

 

[FredaF]

Yep the NICE guidelines clearly state that they are NOT dogma BUT Dr. Nigel Speight was referred to the General Medical Council for not following them and stood down while they investigated him....A trial was carried out by EC on to determine which NHS clinics were following the NICE guidelines... YET zero research into the applicability of the guidelines heart rate monitoring recomendations (70% of age predicted max far too high and the idea of getting exercise up to 30 mintues a day before starting to monitor HR is too bizzare fro words..) and research PACE and FINE show that GET and CBT don't work....

 

[FredaF]

Just like to say that when I attended "clinic" in 2014 there was very little choice of constant heart rate monitors that were practical. I was an early adopter (mainly because I'm a bit of a geek) but when I showed them they were receptive. It's easy to bash the clinics but I found the staff there practical and helpful (Cambridgeshire). I think it's a bit tricky for them to "treat" people with what they have available. They were practical enough not to push CBT on me and advise me on lots of things to do with coping, pacing and dealing with my employer including writing them letters etc. The clinic had a specialist Doctor who diagnosed me. It's NICE guidelines that are the problem for me and the lack of adequate research funding into biochemical causes and treatment. I realise that my clinic may have been one of the better ones btw, but they aren't all bad.

 

[FredaF]

There are degrees of bad. Not keeping up with research and being up to date with heart rate monitoring is despicable. The research by Snell et al came out in 2010- so by 2014 it was readily available as were heart rate monitors and it has always been easy to meaure your HR people have been doing it manually for decades. No excuses for poor quality care. Being less bad is hardly an endorsement. We deserve good quality care not less bad, less inappropriate care.

 

[arewenearlythereyet]

There are degrees of bad. Not keeping up with research and being up to date with heart rate monitoring is despicable. The research by Snell et al came out in 2010- so by 2014 it was readily available as were heart rate monitors and it has always been easy to meaure your HR people have been doing it manually for decades. No excuses for poor quality care. Being less bad is hardly an endorsement. We deserve good quality care not less bad, less inappropriate care.

Well in the uk constant Heart rate monitors at the time were only just coming out so no you are incorrect there. The only heart rate monitors were periodic use strap on ones which are too uncomfortable to wear all day. Taking wrist measurements is also not a practical way of pacing Imo. Being angry is fine but just ranting and expecting the world on a plate from nurses and doctors is also unrealistic. I was merely trying to balance this misdirected anger at the generic establishment/care on offer. It's the proponents of a bps model we need to counter with facts and get the nice guidelines changed so that clinics can have a more appropriate set of treatments. Doctors and nurses in the main want to help make people better. Yes they need to be better informed and yes their lack of appropriate care is frustrating, but they really aren't the problem in our case...it's higher up than that.