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

Tom Kindlon said:

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The percentage seeing the doctor is going down.


From the remember September 2016 newsletter

11. Earlier this year reMEmber made a request under the Freedom of Information Act in relation to the Sus-sex-Wide ME/CFS service. The reply showed that over a recent three year period 1245 people were referred to that service, but only 229 of them saw the doctor there. Over an eighteen month period 119 were confirmed as having ME/CFS. Diagnoses other than ME/CFS included auto-immune conditions, cardiac disease, endocrine disorders, neurological diseases such as MS or Parkinson’s, and psychiatric disorders. “People confirmed or suspected of having any of these were referred back to their GPs”.
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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.
 
Given that when ME/CFS clinics do have decent doctors, they seem to find quite a lot of the people referred don't actually have ME but have some other, possibly treatable condition, and given that the GP who referred the patients is probably pretty clueless about ME as most are, this is horrifying though not surprising. It means the vast majority have never had a thorough diagnosis.

The ME clinic I was referred to had a GP who 'took an interest in ME' to do the diagnosing. He was completely clueless.

I wonder whether there is any other physical disease where patients referred by their GP to a specialist clinic are shunted straight off to 'therapy' without ever seeing a specialist doctor.
 
i was seen by a physiotherapist for my initial assessment I think I would have been seen as a good potential candidate for their stats because I was working part time
not surprisingly attending their clinic group sessions didnt help me increase my working hours and I have now retired early
I am still in contact with 3 others from that group none of whom is working - thats 50% of the group
 
Tom Kindlon said:
The English "CFS/ME" services mainly focus on offering CBT/Graded Activity Therapy/Graded Exercise Therapy. Other nonpharmacological approaches are sometimes offered.
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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

Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England.

Collin SM, Crawley E.

BMC Health Serv Res. 2017 Jul 14;17(1):488. doi: 10.1186/s12913-017-2437-3.

https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3
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Overall averages for Table 2, "Mean change (95% CI) in patient-reported measures between assessment and 1-year follow-up across CFS/ME specialist services":
Frustratingly, the overall weighted averages for the measures included in Table 2 were not included in the paper.

Two people have independently calculated them. Here they are: n = 432

Chalder Fatigue Scale (range 0–33) -6.05

SF36 Physical Function Subscale (range 0–100) 4.19

Work & Social Adjustment Scale (range 0–40) -3.40

Visual analogue pain rating scale (range 0–100) -4.42

HADS Anxiety Score (range 0–21) -0.56

HADS Depression Score (range 0–21) -1.35

Epworth Sleepiness Scale (range 0–24) -1.07

Jenkins Sleep Jenkins (range 0–20) -1.37

CIS20R Fatigue Subscale (range 8–56) -4.73

CIS20R Concentration Subscale (range 5–35) -2.67

CIS20R Motivation Subscale (range 4–28) -2.42

CIS20R Activity Subscale (range 3–21) -1.95
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Sisyphus said:
I am so glad we do not have an NHS in my country. Yet.
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The problem is not the existence of an NHS which has many great features, not least the fact that everyone has access to medical treatment not dependent on the ability to pay. The problem is when the NHS is grossly underfunded so services are stretched to breaking point, and when bad science is allowed to dominate in some areas as it is in the UK at the moment for ME. That can happen in any medical system. I gather the prestigious Mayo Clinic in the USA uses GET for ME and that has nothing to do with an NHS system.
 
Trish said:
The problem is not the existence of an NHS which has many great features, not least the fact that everyone has access to medical treatment not dependent on the ability to pay. The problem is when the NHS is grossly underfunded so services are stretched to breaking point, and when bad science is allowed to dominate in some areas as it is in the UK at the moment for ME. That can happen in any medical system. I gather the prestigious Mayo Clinic in the USA uses GET for ME and that has nothing to do with an NHS system.
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this
 
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.
 
Dolphin said:
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.
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there are enough people in the UK who pay (either directly or if they have private insurance) for CBT/GET with the likes of Optimum Health and who pay for Lightning and all the other BS to make a nice living for all the purveyors
 
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