Sussex-Wide CFS/ME Service: Out of 973 patients referred, only 105 saw the doctor

https://twitter.com/user/status/1025786981731713024

 

This wouldn't be allowed in Germany. It's a disaster that people that get referred never see the doctor - why the referral? Instead one could save time and energy. Shame.

 

This is disturbing, and I wonder if these numbers might be similar in other countries as well. Is the whole article available online? Can't find it on their website.

 

The English "CFS/ME" services mainly focus on offering CBT/Graded Activity Therapy/Graded Exercise Therapy. Other nonpharmacological approaches are sometimes offered.

 

No, the full article isn't online.

 

The percentage seeing the doctor is going down.


From the remember September 2016 newsletter

So only 18% of people referred to the Sussex ME/CFS service saw a doctor

One would think with all those people being rediagnosed, the number shouldn't be going down much, if at all.

 

I remember hearing in the last year or two that in another service, with Amolak Bansal, he was only seeing a tiny amount of patients (he just reviewed the notes on the others). This wasn't his choice.

 

Here in Norway it is a mix. What worries me is that patients are referred, goes through the rehabilitation or whatever they are offered, and then they're finished and left to themselves again. I am not aware of any places with long term follow up. So even people working with ME patients still believe most recover with time, they don't know any better.

I also wonder how they evaluate their own service..

 

Yes, this is the Sutton service. The lead nurse looked surprised when I asked how we got to see Dr Bansal. Shesaid he reviewed the notes and only saw complex cases.
So, we saw him privately under insurance. Fortunately we can pay the cost of this insurance for the family. It only covers a fraction of the costs incurred over the years, but I'm so glad we are able to keep this up.

 

The overall results from the English clinics are not good

 

Only 23.7% increase work!

 

I am so glad we do not have an NHS in my country. Yet.

 

The NHS has a lot of positives about it.
But I think a reasonable argument can be made that the way it works has facilitated CBT and GET to become so dominant.
Because nobody pays anything including co-payments, patient preference is less important. If some patients were paying something, it would be clear that the CBT and GET services weren't popular and they might not survive. In some other health systems, there would less chance of fiefdoms for people like Peter White & Simon Wessely. The ME experts in the US offer something quite different to the NHS clinics.

A likely big effect of more money for the NHS over the last 10 years for ME/CFS would probably have been that people would have been discharged less quickly from the local services with more CBT/graded exercise therapy/graded activity therapy sessions. And severely affected people would have had more therapists coming to their homes offering CBT and graded activity therapy.