I am running a seminar on multidisciplinary MS team meetings (MDTs) at the MS Trust conference next week. These are some of my thoughts? Any suggestions? Help?
Hi my husband has had ms for over 30 years now and two years ago was told he is not under a neurologist anymore as theres nothing they can do for him so moved him onto the department called (ironically) neurorehab! His cognitive impairment and decline is a real worry and is getting worse everyday. My mother is a trained assistant nurse practitioner, has worked in the community and homes as carer and management and worked with clients with ms and dementia. All hubby's cognitive issues are pointing to some kinda of dementia but as ms isn't under the dementia umbrella no one will help. All we get is ms causes brain damage, shrinkage etcetera.
We have been told two weeks ago that the neurologist the nurse spoke to after me demanding an mri has agreed. But we have no nuero psychiatric department and he's been seen by psychology which cannot help as cognitive behaviour therapy obviously isn't going to help someone who has so many issues. He's forgetting simple things , things he already knew!
Leicestershire Trust is absolutely 🤬 excuse the language but we are watching him decline everyday! And there's no help!
I've asked about the tr7 mri machine I believe there's one in Nottingham asked can we see what's going on with his grey matter as there no new activity in the white, there's studies studying this with cognitive decline in ms, the answer was short and not sweet " there's no point we know he's got cognitive impairment and we don't have a magic pill" that was the last neurologist we saw.
Sorry for going on but I just feel like I'm banging my head against a brick wall and watching my husband dissappear!
We had MDT for a period at Birmingham Selly Oak and was excellent. Rehab consultant, physio, orthotics etc. We had to travel to Birmingham for this though as locally here in Leamington, local rehab hospital was not great. Postcode lottery as often the case. Now very advanced MS. GP with some minimal Palliative Nurse input, District Nurses daily administering syringe driver and bed sore at home, paid cares via NHS CHC. We had to assemble this team. Took a while to work. Key to MDT is also the patient, and the primary carer, ie me. We are the lead practitioner day to day, hour to hour. We are trained up to read the condition and know when to administer antibiotics to manage repeat chest infections etc. We feel very much off the radar with regards to MS teams as drop off a cliff locally after DMTs stop, you're on your own. No support from MS Society or MS Trust (no AMSCs) here. So we have the assembled medical support but no MS community support, despite being so very advanced after all these years. How is it people disappear from the MS community and of course wider society too. We are alone with this, despite MS Society 'youre never alone', yes we are, all the time. So good luck with the MDT talk. Hope this helps with a view from the coalface. Thanks, Mark
Prof, given the importance of early diagnosis and getting on the correct treatment path, would it not reduce the postcode lottery somewhat to set up specialist diagnostic teams. This could be on a regional level but it would be easier to educate 10ish teams across the country than hundreds of HCPs. Once a patient is diagnosed and on the right treatment path, the individual neurologists take on more of a management role. It is the inconsistency / ineptitude at the early stages that is leading to such variable outcomes for patients. Surely this is key to the hit hard and early strategy. There are on average 26 people diagnosed with MS each working day by breaking down the stats on the MS Trusts website. This doesnt feel like a huge patient load to manage (i know that it would be probably triple to account for the 2/3 that are referred and do not have MS). Some patients will strike lucky - they will be assigned to yourself or a similarly minded neurologist. The majority will not and will only reach you after suffering avoidable damage. If the pyramid approach to treatment is to be advocated then this concept also needs to be applied to the quality of care. In order to be most effective, a football team will build around its best players and they will play where they are likely to have the most influence on the game. MS care needs to take on the same principle. At the moment, we cant get passed the coin toss!!
Interesting read as both a HCP and PWMS. Definitely needs more MDT working to speed up diagnosis and getting DMT.
I very much like your idea of expanding MDT for a formal teaching platform. This would be very beneficial. I had my first MS clinic appointment recently.... I ask what type of MS do I have ... response it’s not relevant. Next question Did the MRI scan with contrast show any disease activity? Answer it’s not relevant.
From reviewing your MS -Selfie I felt empowered as a patient. After my consultation I feel what’s the point.
BARTS refused to take me on as an MS patient because I was out-of-area. I was told I had to live in Tower Hamlets, Waltham Forest, Hackney, Newham, or City of London to be in the right catchment area. I moved there. I haven't managed to find out where else I can move to and still be a patient. Though, even if I could get an answer, it can change any time. Where one has to live to get an MS nurse is a different matter. Of them, only Hackney and Waltham Forest have Community MS Nurses, apparently.
The choice of DMTs should be the patient's, not the neurologists. It's our body and our life. And it's not just DMTs: Not all neurologists will prescribe Modafinil; not all CCG's/ICS's allow it. I'm afraid of my neurologist retiring for several reasons, one of which is I may lose Modafinil again.
I have a PALS complaint in from the beginning of December that's yet to be completed (neuro knew nothing of it). Have MRI booked for next weekend because I failed natilizumab and the infusion reactions from ocrelizumab are difficult to handle plus I may have relapsed but it wasn't investigated at the time I reported it. I didn't see neuro before swapping to ocrelizumab.
I know of others who have had problems. But as an ex nurse I can't forgive a drug error.
Infusion happens without MS nurse input at the hospital I receive my treatment on the MDU. The MS team currently has an MS nurse with little experience, a vacancy for MS nurse consultant. The MDU is mostly staffed by bank nurses that often don't have the experience of MS meds to pick up errors (for myself half dose of ocrevus prescribed for my 2nd full dose). The MDU has been moved to a repurposed A&E waiting room with minimal facilities (1 loo for the entire unit, no piped oxygen, no kitchen) because of covid and no news as to what's happening. Regular patients are deeply unsatisfied with the service. There is 1 MS neuro so appointments are getting forgotten, scans are not ordered (only medical staff can order). There's also a great amount of that's not MS it's a GP issue from MS team only to be told the reverse by GP team.
Hi my husband has had ms for over 30 years now and two years ago was told he is not under a neurologist anymore as theres nothing they can do for him so moved him onto the department called (ironically) neurorehab! His cognitive impairment and decline is a real worry and is getting worse everyday. My mother is a trained assistant nurse practitioner, has worked in the community and homes as carer and management and worked with clients with ms and dementia. All hubby's cognitive issues are pointing to some kinda of dementia but as ms isn't under the dementia umbrella no one will help. All we get is ms causes brain damage, shrinkage etcetera.
We have been told two weeks ago that the neurologist the nurse spoke to after me demanding an mri has agreed. But we have no nuero psychiatric department and he's been seen by psychology which cannot help as cognitive behaviour therapy obviously isn't going to help someone who has so many issues. He's forgetting simple things , things he already knew!
Leicestershire Trust is absolutely 🤬 excuse the language but we are watching him decline everyday! And there's no help!
I've asked about the tr7 mri machine I believe there's one in Nottingham asked can we see what's going on with his grey matter as there no new activity in the white, there's studies studying this with cognitive decline in ms, the answer was short and not sweet " there's no point we know he's got cognitive impairment and we don't have a magic pill" that was the last neurologist we saw.
Sorry for going on but I just feel like I'm banging my head against a brick wall and watching my husband dissappear!
We had MDT for a period at Birmingham Selly Oak and was excellent. Rehab consultant, physio, orthotics etc. We had to travel to Birmingham for this though as locally here in Leamington, local rehab hospital was not great. Postcode lottery as often the case. Now very advanced MS. GP with some minimal Palliative Nurse input, District Nurses daily administering syringe driver and bed sore at home, paid cares via NHS CHC. We had to assemble this team. Took a while to work. Key to MDT is also the patient, and the primary carer, ie me. We are the lead practitioner day to day, hour to hour. We are trained up to read the condition and know when to administer antibiotics to manage repeat chest infections etc. We feel very much off the radar with regards to MS teams as drop off a cliff locally after DMTs stop, you're on your own. No support from MS Society or MS Trust (no AMSCs) here. So we have the assembled medical support but no MS community support, despite being so very advanced after all these years. How is it people disappear from the MS community and of course wider society too. We are alone with this, despite MS Society 'youre never alone', yes we are, all the time. So good luck with the MDT talk. Hope this helps with a view from the coalface. Thanks, Mark
Prof, given the importance of early diagnosis and getting on the correct treatment path, would it not reduce the postcode lottery somewhat to set up specialist diagnostic teams. This could be on a regional level but it would be easier to educate 10ish teams across the country than hundreds of HCPs. Once a patient is diagnosed and on the right treatment path, the individual neurologists take on more of a management role. It is the inconsistency / ineptitude at the early stages that is leading to such variable outcomes for patients. Surely this is key to the hit hard and early strategy. There are on average 26 people diagnosed with MS each working day by breaking down the stats on the MS Trusts website. This doesnt feel like a huge patient load to manage (i know that it would be probably triple to account for the 2/3 that are referred and do not have MS). Some patients will strike lucky - they will be assigned to yourself or a similarly minded neurologist. The majority will not and will only reach you after suffering avoidable damage. If the pyramid approach to treatment is to be advocated then this concept also needs to be applied to the quality of care. In order to be most effective, a football team will build around its best players and they will play where they are likely to have the most influence on the game. MS care needs to take on the same principle. At the moment, we cant get passed the coin toss!!
Interesting read as both a HCP and PWMS. Definitely needs more MDT working to speed up diagnosis and getting DMT.
I very much like your idea of expanding MDT for a formal teaching platform. This would be very beneficial. I had my first MS clinic appointment recently.... I ask what type of MS do I have ... response it’s not relevant. Next question Did the MRI scan with contrast show any disease activity? Answer it’s not relevant.
From reviewing your MS -Selfie I felt empowered as a patient. After my consultation I feel what’s the point.
Is your MS-selfie going to be nationwide?
Sarah
BARTS refused to take me on as an MS patient because I was out-of-area. I was told I had to live in Tower Hamlets, Waltham Forest, Hackney, Newham, or City of London to be in the right catchment area. I moved there. I haven't managed to find out where else I can move to and still be a patient. Though, even if I could get an answer, it can change any time. Where one has to live to get an MS nurse is a different matter. Of them, only Hackney and Waltham Forest have Community MS Nurses, apparently.
The choice of DMTs should be the patient's, not the neurologists. It's our body and our life. And it's not just DMTs: Not all neurologists will prescribe Modafinil; not all CCG's/ICS's allow it. I'm afraid of my neurologist retiring for several reasons, one of which is I may lose Modafinil again.
I have a PALS complaint in from the beginning of December that's yet to be completed (neuro knew nothing of it). Have MRI booked for next weekend because I failed natilizumab and the infusion reactions from ocrelizumab are difficult to handle plus I may have relapsed but it wasn't investigated at the time I reported it. I didn't see neuro before swapping to ocrelizumab.
I know of others who have had problems. But as an ex nurse I can't forgive a drug error.
Infusion happens without MS nurse input at the hospital I receive my treatment on the MDU. The MS team currently has an MS nurse with little experience, a vacancy for MS nurse consultant. The MDU is mostly staffed by bank nurses that often don't have the experience of MS meds to pick up errors (for myself half dose of ocrevus prescribed for my 2nd full dose). The MDU has been moved to a repurposed A&E waiting room with minimal facilities (1 loo for the entire unit, no piped oxygen, no kitchen) because of covid and no news as to what's happening. Regular patients are deeply unsatisfied with the service. There is 1 MS neuro so appointments are getting forgotten, scans are not ordered (only medical staff can order). There's also a great amount of that's not MS it's a GP issue from MS team only to be told the reverse by GP team.