"Fatigue Clinic most disappointing"

I attended the Chronic Fatigue Clinic over a year ago.

Poor and unclear parking arrangements. Long way from to walk from bus stop. Receptionists not very friendly, not speaking clearly, not informative about where to wait, where to go and what is going on. Sometimes even rude. Not even happy to help about other queries like where toilets are, etc. The hospital is one of the most unsuitable venues for ME/CFS patients. Too many doors which are all banging at a rate of approx. every 10 sec! Bright spotlights. Nowhere to sit in peace (plenty of seats in waiting area, but it's not peaceful there) or even lie down when fatigued.

Fatigue clinic rooms not suitably equipped for ME/CFS patient's needs (noisy, banging door noises from all around, spot lights, poor ventilation, poor temperature control).

In ME/CFS clinic no access to senior staff or doctor to get proper diagnosis (just a 1-hour session with an occupational therapist who doesn't even examine you). No access to specialists for specific aspects of condition. Group therapy ineffective, not really helpful or really thought-through. Just an expanded version of print-out given on initial interview. Idealistic and contradictory advice given with no answer when contradictions are pointed out. No mention about root causes or underlying mechanisms which could cause the condition, no access to specialist advice on symptoms/specific problems, no access to holistic approach, no access to psychological support, no information on managing benefits system (except being told that the chances of getting sick pay are negligible and even then not without a hefty fight), no help or even reasonable advice how to manage day-to-day personal care (all pie-in-the-sky and on the assumption that one has lots of friends and family to do things for you and lots of money to afford all the "helps and conveniences" to manage daily care. 10 sessions of group therapy (where specific questions are discouraged) and one follow-up by telephone for a condition which lasts for years. No interest of staff in patient progress and even patronising dismissal when mentioning psychological impact. I found the clinic very hostile for ME/CFS patients and the group therapy totally useless while the tortuous travel was really difficult. I didn't attend last sessions as I was getting worse rather than better due to all the adverse circumstances.

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Responses

Response from Newsam Centre

Thank you for taking the time to post your concerns on NHS Choices. I am so very sorry to hear about your experience and want to assure you that we do not want anybody to be left feeling the way that you have described. Nevertheless, I am grateful for you bringing it to our attention.

My name is Janet Johnson and I am the Matron for the Leeds and West Yorkshire CFS/ME service

I am very concerned regarding the issues you raise of your experience when attending this service. It would be very helpful if you could contact me so we can explore your concerns in more detail.

I can be contacted via our PALS office on on 0800 0525790 or e-mail pals.lypft@nhs.net.

Please accept my assurance that we take feedback regarding the service very seriously, it provides our organisation an opportunity for us to continually improve the care and services we provide.

Kind regards

Janet Johnson

Matron - Liaison Psychiatry

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