UK - Discussion of how many patients use NHS ME/CFS clinics

[It's M.E. Linda]

I was referred January 2016 seen for assessment April 2016 group programme attended end August for 10 weeks, follow up session December 2016 (which I couldn’t go to). Discharged early 2017. So approx 12 months.

ENGLAND:

I agree with @NelliePledge about a year:

Dec 2013 referred to satellite clinic of North Bristol CFS/ME clinic.
Jan 2014 - Jan 2015 received one-to-one appts. Should have been 8 but extended to 10 to support me through dismissal from work. (Therapist was pleased/surprised I didn’t have a relapse following one of the Health Review appts I had at work)

ETA ‘England’
ETA 2 - Explanation of repeating myself......I do have brain fog but this is a brief version of my previous post, which holidayed a little longer in the original thread, before being helped to rush over here to join us

 

[Amw66]

Is this solely related to England ( and Wales) or is it meant to be UK based?

 

[It's M.E. Linda]

ENGLAND:

Two local friends have their own experiences with the same clinic mentioned above in #20:

1) “good example” = requested a re-referral to Clinic, following relapse, which has been agreed. Initial appointment to discuss requirements was made by telephone, one to one appointment has been made.

2) “poor example” = only given option to attend weekly group sessions. Managed first one, unable to attend further sessions, now apparently has been discharged from the clinic because she is “too Severe” for them to deal with.
Now I know this woman and she would have been able to manage better if one to one (like mine, 5 years ago) (well spaced out) appointments had been offered to her. But no offer has been made.

Are the available clinics to full of referrals?

Waiting to hear what example 2 letter dismissing her from the service says. She is already in contact with her (ME sympathetic) MP.

Other comments have been made online regarding how she will appear on the clinic statistics
“successfully discharged” ???

ETA ‘England’

 

[It's M.E. Linda]

Is this solely related to England ( and Wales) or is it meant to be UK based?

It says U.K. in the heading and, personally I was interested the Scottish information you supplied in post #16.

Perhaps it would be helpful if we state in the post, which part of the U.K. our experience is from?

 

[Tweeting mad]

How can most people get diagnosed by specialist clinics? There are hardly any.
Gps, and all sorts of specialist diagnose and misdiagnose. It's a fiasco, they can't even agree on a name.
Goddess help you if a psychiatrist gets hold of you, they will say your diagnosis is wrong, you have mus.
Sorry, feel a bit weary today, I don't think it's going to end well

 

[Suffolkres]

How can most people get diagnosed by specialist clinics? There are hardly any.

Our local Norfolk and Suffolk Serive (ECCH) has 1600 patients ( they say currently which includes 200 referrals). They triage and diagnose approximately 1000 patients a year.
It is accepted we have between 6000 and 8000 patients in Norfolk and Suffolk with a diagnosis, which includes children served by ECCH. Plus a paediatric Clinic separate at Ipswich Hospital.
We have had a dedicated Adult ME Service here for nearly 40 years, initially at the James Paget Hospital Lowestoft.

Therefore all 6,000 - 8,000 would have been diagnosed at specialist ME Service level. The service also encompassed Cambs and Peterborough in 2005, so there was a high number diagnosed additionally in the Eastern region Clinical hub.