My NHS experience with CFS – Part 1 (GP and referral to specialist clinic)
I know that a lot of people have had very bad experiences with doctors and the NHS, however this really hasn’t been the case for me.
First step for me was having a fab GP, she was supportive from the outset and explained that she thought I had CFS, but had to do a load of tests to rule everything else out.
It took from Nov13- Jan14 to get through that processes, as I needed to have a couple for re-tests done, after all came back within range ‘normal’, my GP gave me the CFS diagnosis and referred me to one of the 14 specialist centres in the UK for the development of services for people diagnosed with Chronic Fatigue Syndrome/ME.
It was at this point (End Jan 14) that I decided to let my doctor sign me off from work, up until this point I was attempting to go in on reduced hours and days
Luckily for me it is based in Bristol, however the waiting times to get seen for me at least was around 5 months, my first appointment being in June 14.
As you will have seen from my other posts (Under CFS Tips) , I didn’t want to wait around and do nothing until I got seen by the hospital, and I would suggest other people don’t either.
My Perceptions of the CFS/ME clinic before my appointment
To me it was all a bit of a mystery about what it was they did at the clinic, there just wasn’t the information available, all I had was to go on word of mouth and their website (Link)
I had heard very mixed reviews from different people, from my GP (although surely she was paid to say this) as well as my councillor saying how it has helped various patients of theirs. To a family friends personal account that it wasn’t very good and it solely involved group work, sat in a room with people much worse than herself and wasn’t very productive.
I really had no idea what to think, so like me with most things I went into the process with an extremely open mind, to take in information and help they could give me, but not to pin all my hopes on it in case it just wasn’t for me. Also I wanted to start using my own strategies before my appointment even came around.
Initial Appointment with North Bristol CFS/ME Clinic
By the time my first appointment came around at the clinic based at Southmead Hospital, I had already seen significant improvements in my fatigue levels with I attributed to being more self aware and pacing myself (Link).
So when my appointment got set, I was sent loads of forms to fill this was about 3 months before my actual appointment, so I would advise people to fill them out close to the appointment as I had gone from almost bed bound to starting a phased return to work in the time I was waiting.
On the day of the appointment, I was a bit stressed so I got there really early and I am really glad, parking was an absolute nightmare, and then it turned out you needed change for the parking so I had to walk all the way to the main building (about 15 mins there and back) so I was shattered.
I was seen by one of the clinics occupational therapists, she explained that on the team there is a medical doctor, physicos, dieticians and OTs and it is just random who is your point person, but that you will be referred to others if needs be.
The appointment probably lasted about 45 minutes, and was so useful she asked me loads of questions about my symptoms and how it affected my life and the strategies I had put in place and I ran her through my phased return to work.
She confirmed the diagnosis of CFS/ME that my doctor had given earlier in the year, and confirmed that the strategies I was putting in place were good ones and followed a CBT approach. She also gave me some practical advice in relation to my phased return.
In addition she explained the next steps of my treatment at the clinic, which was to attend two seminars which taught you facts about the condition as well as basis strategies and then I would have a follow up one to one with her, to discuss the best way forward. She booked me on the seminars both and my follow up with her there and then (all in July 14).
- NHS CFS Foundation Seminar – CBT/ GET/ Activity Management (Link)
- NHS CFS Foundation Seminar -Rest and Relaxation (Link)
- NHS CFS Foundation Seminar -Sleep and Stress Management (Link)
- Phased Return to work (Link)
- Advise on fitness/exercise (Link)