Norfolk and Suffolk ME and CFS Service: April 2015 survey results

[Dolphin]

Patient Survey carried out by the NHS - April 2015

The Provider of the Norfolk and Suffolk ME and CFS Service contact patients to ask for their views regarding their experience of the service.

The most recent survey took place earlier this year and a report was written in April 2015.

You can download a copy of the report from here
https://drive.google.com/file/d/0B_yBB-PNDPXeOVA4aGF4bWswQXc/view?usp=sharing.

The report is well worth a read, especially the comments of the respondents which are included at the end of the report. These comments have been analysed and will be taken into account as we transition from the old specification to the new biomedical service specification.

The time and effort that patients take to fill in the form and add, sometimes very detailed comments, are much appreciated by both the NHS and our Patient and Carer Group.

http://nandsme.blogspot.co.uk/2015/09/patient-survey-carried-out-by-nhs-april.html

 

[Dolphin]

Not many recoveries:
Scores marked on -5 to +5 scale.

(i) Overall, my illness has: Improved: +5: 2 (2%)

(ii) My symptoms are: Improved +5: 2 (2%)

(iii) I am able to do ...: More +5: 2 (2%)

And those results may not be due to the service based on the comments.

 

[Dolphin]

Many people clearly felt they got some benefit from attending.

I do wonder whether there is a tendency for people to find benefit in lots of things they do in life (you look back and you think you learned something from doing it or you felt you connected with somebody).

Some people in the comments mentioned finding letters they got for benefits or the employer of use.
Unfortunately some services don't offer such letters e.g. Peter White's service and some services associated with it e.g. in Essex.

I got the impression that the professionals weren't hardliners in terms of what they were suggesting.

There's not much info about the physiotherapy: many may not have done it (there are more OTs than physios):

At the time these patients were seen the service consisted of four part time GPwSI, four full time OT’s (although one on maternity leave for part of the year), two part time OT’s and one part time physiotherapist (also on maternity leave for part of the year, one full time support secretary and one part time support secretary. The service make up has changed since that time. It now has four full time OT’s, three part time OT’s and one part time Physiotherapist, with no staff currently on maternity leave. We were able to recruit an extra 0.6WTE OT which began in April 2014.

 

[alkt]

from reading the patients comments i think they are still mixing people with different illnesses. and self report forms are not useful in judging anything objectively .seems to me they are just trying to justify their budget to the nhs.

 

[Sean]

Many people clearly felt they got some benefit from attending.

I do wonder whether there is a tendency for people to find benefit in lots of things they do in life (you look back and you think you learned something from doing it or you felt you connected with somebody).

This may well be the biggest generic confounder of them all in psychosocial research: the understandable wish to interpret experience as more beneficial to you than it really is. Nobody likes to face the grim possibility that they wasted some or all of their lives, or had it wasted by others, and for foolish reasons.

We want our experience and life history to have constructive meaning, and if it didn't turn out well because of trivial and idiotic reasons, that could have easily been otherwise, that is a very bitter pill to swallow, regardless of whose fault it is.

Which is why objective measures are so important. We fool ourselves far too easily. All of us. Clinicians, researchers, and patients.

 

[Sasha]

as we transition from the old specification to the new biomedical service specification.

This sounds the most interesting thing! They're transitioning to a BIOMEDICAL service? Get the flags out! Is that a UK first for an NHS specialist ME/CFS centre?

Do we know more about that?

 

[msf]

Are we still providing a useless/occasionally harmful service?

Do we still have our heads in the sand?

 

[Artstu]

Only 20% of patients completed the survey.

 

[Snowdrop]

How is it the clinician's and researchers don't know that people give answers that aren't always accurate.
I've done it. So people are asked to fill out a form. Maybe they are too dysfunctional to answer with any clear thinking.
That anyone draws anything like concrete conclusions from these for directing clinical practice is irresponsible. How are they allowed to get away with this?
Fortunately people like James Coyne are on their trail.