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.
In my experience they used a HADS questionnaire which was completely inappropriate for ME/CFS which I red-flagged at the time. It allows patients to catalogue their physical symptoms in a misleading way that is then registered as mental health symptoms.
They clearly promoted the Bio-psycho-social view of ME/CFS which is completely unproven and irresponsible to give without clear acknowledgements that the treatment may make the patient worse.
Another patient had a familial problem whereby, one of their parents would not accept their illness and denied their symptoms as a personal failing. I offered the advice that the patient should only interact with that parent on the basis they accept their illness. I was shocked to find this advice rebuffed.
Any slightly un-pc talk about not being crazy was seized upon as offensive heresy, the patient treated as the villain rather than this suspect and often discredited treatment. I feel the service must reflect the diversity of research and opinion and understand the vast array of ongoing ME/CFS science that conflicts with the service they are offering. Such a partisan course is inappropriate and demonstrates a lack of expertise.
I dropped out of the course finding it detrimental to my health, both physically and mentally. My medical records kept at the treatment centre were lost, leading me to question if there was a motive to offload records of the treatment failing, in order for the professionals who work there to retain employment by perpetuating myths as to its efficacy. I have never had my records lost in this manner before and it’s not as though they moved premises.
The NHS clinics don’t appear to have any records of their outcome data as a few people have been trying to get it via FOI requests on the website What do they know. NICE don;t have the data and have no advice for people with orthostatic intolerance .,….and people with the physical/physiological abnormalities listed in the International Consensus Criteria. NICE confirm this lack of guidance for people with ME/CFS in their responses to FOI requests. So we have a group of patients that are ignored by NICE and the Department of Health and the NHS. Can MEAssociation suggest that since NICE have NO guidelines for people with the physiological/physical abnormalities listed in that in absentia the ICC and or CCC are used?
NICE said that it decieded to ignore people with physiological/physical abnormalities because NOT all people with CFS have physical/physiological abnormalities??? This logic is bizzare-
I assume that it is in part due to their belief that the disease is a mental health disorder. The NHS/NICE belief that CFS is a mental health disorder is surely not an acceptable reason to ignore providing guidance to the subset of NICE CFS patients that have physical and physiological abnormalities. It beggars belief. I don;t for one minute think that CFS is a mental health disorder BUT even if it was how is it accpectable to ignore people who also have clear easily measurable objective health abnormalities? Workwell found that people with ME/CFS have abnormally low anaerobic thresholds and chronotropic incompetence – objective measurable facts. Severely ill ME/CFS patients wearing continuous HR monitors (measure every second needed) are observing the impact of exertitivities on their heart rates and noticing heart rate pattern abnormalities that are similar on/acto OVER TRAINED athletes. Is it possible for ME Association to have patient story on its webstite about HR monitoring? Patients notice that when crashing their orthostatic rate is much exagerated and that their blood pressure is also erratic when crashing. To me it seems as if the NHS is often providing advice that is 180 degrees out ie increase activity without any clinical exercise assessment when objective testing and or observations often demonstrate the need to reduce NOT increase activity. Data is powerful….can MEAssociation help get exercise physiologists experienced in dealing with over trained athletes on board and help?? Over trained athletes resting HR goes up when the exercise – same with ME/CFS. Over trained athletes morning resting HR increases when they do too much – same with ME/CFS. Too too much exercise causes an overtrained athletes HR to DROP – same with ME/CFS….
This is very concerning and I am grateful to MEA for raising the issue. The point is made that MEA are not asking for feedback about Dr Bansal who is the clinical lead for the service. However, it is worth emphasising that Dr Bansal is one of the very UK consultants who is actively involved with biomedical research. I do not speak for Dr Bansal, but my understanding is that all NHS consultants are exceedingly constrained in how they can provide ME/CFS services. Dr Bansal has a very clear and determined interest in trying to understand the aetiology and pathophysiology of ME/CFS and he works closely with a number of scientists and PhD students. But I would guess that it is impossible for any consultant to see ME/CFS patients within the NHS without attaching themselves to one of the CFS clinics which are currently forced to promote CBT and GET as effective treatments, even if they consider such treatments to be inappropriate. It is therefore vitally important that Dr Bansal’s reputation is in no way damaged by association with the other CFS services at Sutton Hospital, over which he may have little or no control. Dr Bansal is an excellent and highly qualified doctor who has great respect and concern for his patients. We desperately need more doctors like him involved with ME/CFS and it would be a tragedy for patients if he were in any way deterred from continuing with his work.
My previous comment should read “Dr Bansal is one of the very *few* UK consultants who is actively involved with biomedical research.’
We have also received a further comment from someone wishing to remain anonymous:
“I attended a block of 8 sessions in c.2011.”
“I was given a large book of information to read in advance – I found this in itself overwhelming as I was too sick to read any of it.”
“At the first session we had to go around and introduce ourselves, and most patients had other issues e.g. Depression, anxiety, and one person had even had a stroke. We had to describe our experiences of ‘CFS’ and needless to say everyone had completely different experiences because of their additional diagnoses. None of it seemed relevant to anyone else. At the end we did a 10 minute relaxation exercise and the psychologist said it would help. (It didn’t).”
“Next session were told how to use ‘activity diaries’ and told to work out a ‘baseline’ and monitor what we did. We were supposed to stick to our baseline of activity, then slowly increase under their guidance.”
“At another session we were asked in turn to set a goal e.g. Reading a chapter of a novel, going for a regular walk etc. So we went around the group discussing our individual goals, and what ‘negative thoughts and behaviours’ could be holding us back. I struggled to think of a goal as I was mostly bedbound and caring for myself, and that was my limit at the time. They didn’t/wouldn’t accept this, so in the end I just suggested practising 10 minutes a day of yoga as my goal. When I was unable to achieve this I was told to ‘challenge thoughts on why I cannot consistently pace’ (and this was written on my GP’s report too).”
“I felt I was being treated like a disobedient child as it seemed like everything was always the patient’s fault.”
“One patient said he wasn’t able to go for regular walks all year round, as he found it much harder in winter. The psychologist said there was no reason it was more difficult in winter than summer, and that he should try harder. I commented that I found it used more energy to walk in the winter as I got so cold, and I couldn’t get warm afterwards. The psychologist said she had never thought of that (!!!).”
“I was called into an office and privately reprimanded for not attending the ‘friends and family’ group session for carers (I had nobody to attend on my behalf so for me it would have just been a further waste of my energy to go). This ‘refusal to attend’ was also noted in my GP’s report.”
“Another patient said she had a wedding to go to and asked for advice on coping strategies. She was told that she would be pushing herself and would just have to ‘accept the consequences’.”
“I refused to fill in their feedback papers as they had recently lost a filing cabinet of confidential information.”
“We were told that if we had any problems after discharge we could contact them. About a year or so later I needed help and got in touch. I was told once I was discharged that was it, and if I wanted any help I’d have to be re-referred and do the course again.”
“I might remember a few more details later, but to be honest I have tried to block most of it from my mind as I found it so depressing and humiliating. Furthermore, i now have ongoing issues with pacing myself from attending this course, and for many reasons I regret attending.”
I’ve just been to the first steps seminar in the Sutton CFS clinic today. It was run by a psychologist and a nurse. I didn’t think it was a bad session at all.
It’s clear that CFS/ME is under funded in the NHS – the staff wanted to be able to offer a long term service in a way but the service is designed to be a short term intervention. The waiting times for treatment are unbelievable. I will be most likely starting treatment (the lifestyle management course) in June, having been diagnosed in May last year by my GP, with the diagnosis confirmed by the clinic in November. I’d waited months for that referral.
The staff are doing their best by offering worksheets and recommending sources of information and support where we can learn to manage our symptoms ourselves.
I don’t have a problem with the way the session was run. It was very helpful for the people I spoke to to hear about other people’s symptoms – they felt less alone. Since I’m on a forum I already feel not alone with this illness. We were not invited to introduce ourselves, which was a good thing – didn’t have the energy for that.
It would have been nice for them to prompt us to exchange contact details with the other attendees so that we could support each other in the absence of their contact until June.
It would have been better for me if the session was in the afternoon rather than 10am – a lot of sufferers including me have trouble waking up in the morning.
They’d put out benches and things for people that needed to move around because of pain.
They asked at the beginning that we all respect each other’s opinion. I used to facilitate sessions at work – I think it was well facilitated, though rather sombre which I suppose is appropriate.
Overall I don’t think the main problem lies in how the service is being delivered, but in that we’re ill, it’s horrible to be ill like this, and the illness is poorly understood by science. It must be difficult to deliver any particular services for us lot.
Thank you very much for taking the time to comment on the Sutton ME/CFS service.