We quite often receive feedback from people who are referred to CFS/ME specialist services and we would like to begin what we hope might become a series of articles canvassing views that can then be collated and sent to service providers with a view to perhaps seeking service improvements or at the very least giving them a chance for engagement.
On Wednesday, we were contacted by someone who was distressed by her experience of a CFS/ME management ‘first steps' seminar hosted by Sutton Hospital as part of its specialist service provision and we reveal what she had to say, below.
But before we get to that we want to make it clear that we are not on this occasion asking for feedback about Dr Amolak Bansal – who is the immunologist and clinical lead for the service. We are interested in hearing about the ‘first steps' seminar and the ‘lifestyle management group programme' offered by Sutton Hospital CFS/ME specialist service.
If you have experience of the Sutton lifestyle management group programme or more particularly the ‘first steps' seminar, then we would like to hear your views.
Please leave comments on our Facebook page or in the comment section below. It would be helpful if you could tell us which one you attended and when.
We are seeking constructive feedback and not just critical comments. We would also like to hear of any positive experiences as well.
We have kept her name confidential – and although she will be making a complaint to Sutton Hospital – we will also be making an approach once we have collated any additional views.
This is what she had to say about the ‘CFS First Steps Seminar Clinic' which appears to be an introduction to the ‘lifestyle management group programme' given at Sutton Hospital on Wednesday, 14th June:
“I attended a CFS Seminar today at Sutton Hospital organised by Dr Bansal's CFS service covering Surrey and SW London.”
“I don't have anyone to talk to who will understand just how disappointing it was and why. For over half of the 90 minute seminar we discussed our symptoms and how they affected our lives. I felt this was not just a waste of the limited time we had but also after the effort of getting to the appointment, depressing. People commented that they'd travelled a long way to get to Sutton and arranged child care, I myself had to take the day off work and as a self employed person this cost me dearly.”
“When people tried to start a discussion we were told not to as there was limited time. People then commented that they'd been waiting months for the appointment and it was frustrating not to be able to get our individual views across in a room of people in the same situation.
“A physiotherapist advised we keep an activity chart and buy a pedometer so we can attempt to keep energy usage the same each day. When a mother commented that was impossible she was shouted down again. It appeared the nurse and physio were only accepting of certain types of feedback.”
“At the end of the seminar we were offered the options of GET, CBT, a further one on one appointment or discharge to our own care. The physio commented these are the options according to NICE guideline which will not be changing.”
“I challenged him explaining that as the NICE guideline was based on the unreliable PACE trial results these were very likely to change as CBT and GET were not actually appropriate treatments for ME. He said this view was controversial and not true and spoke over me. He did not let me explain.”
“We were told the wait for these follow ups was 4-6 months. I have had this disease twelve years so manage mostly on my own and have come to terms with it but most people at the seminar were recently diagnosed and may not have all relevant information available to them. They may decide to try GET/CBT and their symptoms worsen because of the small mindedness of these supposed CFS healthcare professionals.”
“I had waited since February for this appointment in hopes it at least would make me feel less alone but I was disgusted and incredibly upset by the so called advice given and what appeared a complete lack of understanding or empathy to the group of around 25 ME sufferers.”
“I'm not sure what I expect you to say but really wanted to share my experience with others who would have more understanding than those at Sutton Hospital. Thank you.”
When she heard that we would feature her comments and would also ask others to share their experiences, she added:
“Oh my goodness. This has got me all emotional, thank you so so much.”
“I really felt as if both me and all the others at the seminar were given such a poor service that I felt like I did when first diagnosed: completely alone and a bit scared.”
“The seminar was a one off; the option offered following my initial appointment with a specialist nurse back in February.”
“I can't tell you how much I appreciate this response. To know there are people out there that do understand is such a good feeling.”
Please let us have your own feedback about Sutton Hospital's CFS/ME management seminar and lifestyle management course and let us know the date of your course either in the comments section below, or via our Facebook page.
We continue to welcome views about any specialist service being offered to people with ME/CFS by the NHS in the UK. Positive or negative feedback can be sent to us via our Facebook page. Be sure to note the name of the clinic and the date when your course took place.