“If you work in the NHS you will understand when I say there is relentless pressure on us in terms of driving efficiency gains and improving, or changing, the way we practice neurology. At present our MS service is nurse-led with our clinical nurse specialists managing and coordinating the care of the MSers registered with our hospital. Our nurses are simply worked off their feet and with the influx of new referrals and the increasing complexity of managing DMTs their task list gets longer and longer. As a result we need to think of ways of improving the way we look after and follow our MSers.”
“The National Institute for Health Research (NIHR) has just put out a call to develop and evaluate group clinics for managing chronic conditions. There is evidence that group clinics work, in particular in areas such as diabetes and hypertension. Do you think they can work in MS?”
“The idea that I am working on is to arrange group clinics to manage specific symptomatic problems that affect MSers. We would propose bringing together 8-10 MSers with the same problem, for example MS-related fatigue. We would envisage all attendees of the clinic completing a standardised questionnaire prior to the clinic to look into factors associated with MS-related fatigue and to rate the fatigue. The clinic will then be run by several healthcare professionals (HCPs) and will include a discussion about MS-related fatigue and how we investigate and manage the problem. As part of the clinic MSers can ask questions and discuss their problems with other MSers and the HCPs. The HCPs will then guide the group in terms of identifying what fatigue-related investigations need performing, if any, for example blood tests, sleep or bladder function studies in individual MSers. We would then discuss the management of fatigue and individual MSers can identify what is appropriate for them. The aim of the clinic would be to educate MSers about fatigue self-management. We would envisage a group clinic lasting much longer than an individual consultation with a neurologist or nurse specialist, possibly 90 minutes instead of the usual in-and-out follow-up consultation that lasts 10 minutes. The group clinic will be concluded by the development of individual investigation and care plans and followed by a follow-up clinic at a specific time-point in the future to assess whether or not the intervention(s) worked. We would envisage supporting the group clinic using a secure social networking platform so that attendees of the group clinic can communicate with each other so as to let each other know if the interventions are working and for them to share best practice amongst the group members. The primary aim of the group clinics would be to improve outcomes and quality of life MSers and to help improve the efficiency of the NHS. To assess the latter we would do qualitative research that will allow us to measure the success and.or failure of the experiment.”
“Do you think Group clinics could work? Would you be interested in participating in group clinics?”
“Please feel free to help; any ideas would be welcome.”
8 thoughts on “ClinicSpeak: group clinics”
Good idea. I recently went on a MS fatigue management course. There were 4 of us in total to begin with, by week three I was the only one attending. The drop out rate was very high. Even though we signed something to say we are interested and are able to attend all six sessions. Two of the MSers went to work instead, one was away. So the course was cancelled, unfortunately. People can't be forced to attend I guess. 8-10 MSers like you suggest is a good number. I do value my consultation appointments with my MS neurologist. I had a very traumatic severe introduction to MS. I have one follow up every six months. Perhaps I would be ok with seeing my MS neurologist once a year for a routine follow up appointment and going to group clinics. I also need the assurance that if I have a bad relapse I can see my MS neurologist still if needed.
I went to a rehab physiotherapy group. There should have been five of us, but only three turned up. In the end we were two. People didn't even bother to call if they couldn't attend. We can't get physiotherapy or a hospital appointment when we need it. Loads of money is wasted by people not turning up for their appointments. On the other hand a London teaching hospital rang me on Good Friday evening to ask me if I was coming to clinic the following Thursday that I wasn't notified about. She didn't even know what the clinic was for. She told me to call the hospital on the Tuesday to find out. Call centres with limited knowledge are looking after our health. Nice.
It sounds like a good idea and a more effective use of resources. As the previous posters have said, the drop out rate may be quite high, so aiming for more people to start off with could be the way to proceed. Access could be a problem for people attending a regular weekly (or monthly?) group – also, the number of sessions (don't make it more than necessary).
I would like a group clinic for all the reasons you detailed. It's a good idea. On the other hand, I and many other MSers find MS support meetings depressing and don't attend because of the dynamic that arises when you put MSers in a room together. There's always someone who talks a lot and doesn't pick up social cues (probably because of MS); there's the embittered guy with problems that go far beyond MS and we won't rest until everyone in the room hears all of it; and then there's me who feels like the fiance in a room full of people chanting Gooble Gobble when I get with too many MSers. (Yes, I get how despicable that makes me.) I'm just trying to say that you might find you need strategies for managing the group dynamic as well as fatigue if you're going to try to put two or more of us together constructively.
I don't think you're despicable, I know what you mean. I have lovely friends that just happen to have MS. It is coincidental not because I went to any group, we are like minded people. We give each other support and advice. I've been to many forums about other conditions and I can tell you now there are always attendees that will steer the conversation back to their own interest. Sometimes I've come away deflated and that I've wasted my time.
Could work although I'd wonder how patient confidentiality could be maintained. I'm quite a private person and would likely be uncomfortable discussing something's in a group setting. I cringe when I see people having their walking assessed in the waiting room.
Will add its one thing choosing to share info / stories with other msers and another having no choice but to do that to get the care / treatment needed. The more I think about it the more I'm not keen. I'd go for things like blood work etc and maybe a dmt review but I'd want to be able to discuss any worries I have in private. As an add on / optional choice great but I wouldn't want to see group consultations replace the standard one to one reviews.
I can see what you mean, I wouldn't be happy discussing somethings in a group clinic that are private. I could ask to have a private word with the MS nurse at the end of the group clinic. If that wasn't an option I could email the MS nurse about it. This really does need to be taken in to account. That MSers still need to be able to discuss somethings in private with their MS nurse or neurologist if they want to.