"over all my experience was demoralising and poor"

The previous post regarding the CFS service at the AAH has reminded me of my own negative experience there. I felt the service to be either lacking in understanding of the needs of CFS patients, or inflexible, or perhaps just unable to meet those needs.

I too was, at one stage, too severely affected to be able to attend appointments. My treatment just stopped. I asked may I have telephone consultation but was told this was not available.  I was told that the service was only for mild to moderate ME patients, as the evidence base for treatment only applied to that category of patient. It was therefore implied, quite devastatingly, that I was "too severe" for treatment.

This leaves patients who are house or bed bound, and in the greatest need, with no obvious support from NHS Lothian. Physiotherapists and Psychologists presumably have an evidence based approach to the treatment of others who are bed bound or with chronic conditions. Could this not be adapted for ME patients and offered via telephone or Skype?

When I was eventually able to attend again I was only "allowed" 2 Psychology appointments, as this was a "top up" intervention for relapse. The approach adopted seemed rather more text book than patient centred. Given the severity of disability associated with ME, the amount of loss involved and the huge adjustment required in order to try to continue to live a life of value.  2 sessions felt like a insulting "sticking plaster". Given that this is a department of Health Psychology I asked was there no scope to offer more. I was told that there were insufficient resources.

My experiences of admin services were similarly poor. Staff frequently appeared to be over burdened. At times my messages seemed to lie on answer machines unheeded.

I appreciate the difficulties of trying to offer services, with increased demand and finite resources; and I wonder about the staffing allocation and admin support to provide the ME service, and what demands the service is under. I also wondered to what extent a more flexible "can do "attitude, and some more creative and innovative thinking could improve this unhappy service provision.

While some individual staff were indeed caring and helpful, over all my patient experience was demoralising and poor.