The care of pwMS in the UK remains a postcode lottery, and unless we have the data to expose the variance between the best and worst centres in the UK, very little will happen. Do you agree?
The honest truth is that neurology is still in the dark ages regarding the understanding of the diseases this specialty covered. MS is no exception. Only last week I read a story in the sports pages of a 45 year old footballer (diagnosed 10 years ago) who had died of MS. On the MS Society website is a story of a woman in her early 20s who has advanced MS and lives in a care home. I find these stories both sad and shocking. 20+ expensive MS drugs yet they probably only slightly delay worsening disability. The real metrics for MS care are not is the neuro friendly or does the MS nurse respond quickly to emails, but did treatments keep you in employment until normal retirement age, did the treatments stop your disability from worsening…. The focus should be on getting treatments which stop disability worsening not just relapses. The we can worry about issues of equitable access to these treatments.
Good idea - I’m frankly astonished at the differing levels of care having moved and healthcare provided by a different trust. Still minimal access to neurologists but so many more and therefore much more access to MS nurses. However in this trust I have to travel over an hour to see my consultant and have an MRI and before it was 10 mins to the local hospital for both ( I have requested an MRI at local hospital 5 mins away which apparently is possible but seems to be an unusual request) Why does this happen?
I watched an audit from Leeds TH from 2019 which showed that they had a much lower scan frequency than the other 24 centres audited for RRMS- showing some MRI scans where spaced more than 40 months apart which was concerning to see. I definitely think there should be Uk wide standardised guidance for MS treatment and monitoring and an audit as you say in your article
At the moment, I am lucky to see a Neurologist. I was told you are too healthy, and I do not want to see you for 2 years. I guess I am managing well. But I would expect better than this. Hey ho. Xx
This happened to me too. I kept being fobbed off, because I felt worse but my symptoms were not necessarily obviously physical, more cognitive and sensations. I kept being told it was just a flare. When I asked when I would have another MRI (I'd had one, only on my brain not spine, at diagnosis) my consultant said, oh you'll probably never need one! So I spoke to my GP who referred me to another trust. A little further away but so much better. The first thing they did was give me full MRI with contrast, and immediately put me on a DMT with yearly MRIs. It frustrates me that I had 5 years of getting worse that could have been different.
Victoria, it sounds like you’re in the states! We are notorious for what you’ve described. I know I bang on with this, but we need to treat MS like cancer.
No I'm in the UK! The NHS is wonderful but sometimes smaller trusts get left behind, with old (patronising, male!) consultants leading small departments getting stuck in their ways. The consultant I am talking about has since retired. Yes, MS and all neurological conditions needs to be treated more like cancer. I have also had cancer and had amazing treatment with the NHS.
Hi Victoria, I meant sounds like my experience has been here in the states. I know you’re not in the states - it was a typo! My cancer treatment though, here, was also excellent. We should treat MS with the same urgency!
Completely agree. There is such a variation in the standard of care which I myself have encountered. It is unfair on all patients with MS that this postcode lottery can greatly impact MS morbidity and the subsequent effect on quality of life. More needs to be done to challenge this and I think real data would be an eye-opening start. I think an open database where MS patients can add reviews of their experiences where they live including a star rating and some written information could be useful.
Yes potentially, however if someone is in a low scoring area they are likely to be aware of it already through their own experience. Also, by looking at areas that score better and what they are doing better, these patients may gain a further insight in how to advocate for themselves at their own centre. I personally found through educating myself, advocating for the MS care I wanted and discussing this clearly with my MS team has helped. There is a long way to go though to improve MS services equitably.
Absolutely!. I read through posts from MS folk on the MS Trust, MS Uk and MS Society forums/ facebook pages and it’s sometimes heart breaking to read how long it’s taking just to get a diagnosis and/ or see a Neurologist or get responses from MS Nurses. There needs to be some national initiatives to ensure that each hospital, each Trust learns from ‘best practice’ and an audit of everything to do with MS treatment/ services would be a good place to start.
Good idea. I wish it would happen but do not hold out much hope. Living in an area of poor care the cost would be astronomical to bring us in line with the better MS centres, but perhaps MSers could get referred elsewhere if we knew where to go.
Reading that feels like fresh air blowing in. I look forward to giving input. Hopefully now that the ball is rolling planning can be done and actual data can be collected to generate a regional comparison. If some academic picks up the ball I've no doubt we'll run with it.
Brilliant idea. I am at a centre of excellence and am astounded how much you did for your patients versus how little monitoring of disease progression happens at mine. If you did this with the MS-Selfie users could you get one of the research students to do much of the work? One studying for their MD or Masters?
The trouble is people with MS suffer so much fatigue, we don't have the energy. The same with charities. I'm sure this is why cancer charities are so much more successful.
Extremely interested in comparisons data. I’ve moved from one chaotic hospital to one which is a total shambles and just so understaffed in ms neurology it makes the patient despair.
I know it would be complicated and not perfect but some sort of metric comparing outcomes would be good. Time to disability, time to wheelchair bound, time to bed bound, fully catheterised etc would be really good
The honest truth is that neurology is still in the dark ages regarding the understanding of the diseases this specialty covered. MS is no exception. Only last week I read a story in the sports pages of a 45 year old footballer (diagnosed 10 years ago) who had died of MS. On the MS Society website is a story of a woman in her early 20s who has advanced MS and lives in a care home. I find these stories both sad and shocking. 20+ expensive MS drugs yet they probably only slightly delay worsening disability. The real metrics for MS care are not is the neuro friendly or does the MS nurse respond quickly to emails, but did treatments keep you in employment until normal retirement age, did the treatments stop your disability from worsening…. The focus should be on getting treatments which stop disability worsening not just relapses. The we can worry about issues of equitable access to these treatments.
Good idea - I’m frankly astonished at the differing levels of care having moved and healthcare provided by a different trust. Still minimal access to neurologists but so many more and therefore much more access to MS nurses. However in this trust I have to travel over an hour to see my consultant and have an MRI and before it was 10 mins to the local hospital for both ( I have requested an MRI at local hospital 5 mins away which apparently is possible but seems to be an unusual request) Why does this happen?
Is this something the MS Register could expand to? They already have a good database on the go
I watched an audit from Leeds TH from 2019 which showed that they had a much lower scan frequency than the other 24 centres audited for RRMS- showing some MRI scans where spaced more than 40 months apart which was concerning to see. I definitely think there should be Uk wide standardised guidance for MS treatment and monitoring and an audit as you say in your article
At the moment, I am lucky to see a Neurologist. I was told you are too healthy, and I do not want to see you for 2 years. I guess I am managing well. But I would expect better than this. Hey ho. Xx
This happened to me too. I kept being fobbed off, because I felt worse but my symptoms were not necessarily obviously physical, more cognitive and sensations. I kept being told it was just a flare. When I asked when I would have another MRI (I'd had one, only on my brain not spine, at diagnosis) my consultant said, oh you'll probably never need one! So I spoke to my GP who referred me to another trust. A little further away but so much better. The first thing they did was give me full MRI with contrast, and immediately put me on a DMT with yearly MRIs. It frustrates me that I had 5 years of getting worse that could have been different.
Victoria, it sounds like you’re in the states! We are notorious for what you’ve described. I know I bang on with this, but we need to treat MS like cancer.
No I'm in the UK! The NHS is wonderful but sometimes smaller trusts get left behind, with old (patronising, male!) consultants leading small departments getting stuck in their ways. The consultant I am talking about has since retired. Yes, MS and all neurological conditions needs to be treated more like cancer. I have also had cancer and had amazing treatment with the NHS.
Hi Victoria, I meant sounds like my experience has been here in the states. I know you’re not in the states - it was a typo! My cancer treatment though, here, was also excellent. We should treat MS with the same urgency!
Completely agree. There is such a variation in the standard of care which I myself have encountered. It is unfair on all patients with MS that this postcode lottery can greatly impact MS morbidity and the subsequent effect on quality of life. More needs to be done to challenge this and I think real data would be an eye-opening start. I think an open database where MS patients can add reviews of their experiences where they live including a star rating and some written information could be useful.
Indeed that would be useful if a potentially depressing for those in low scoring areas
Yes potentially, however if someone is in a low scoring area they are likely to be aware of it already through their own experience. Also, by looking at areas that score better and what they are doing better, these patients may gain a further insight in how to advocate for themselves at their own centre. I personally found through educating myself, advocating for the MS care I wanted and discussing this clearly with my MS team has helped. There is a long way to go though to improve MS services equitably.
Absolutely!. I read through posts from MS folk on the MS Trust, MS Uk and MS Society forums/ facebook pages and it’s sometimes heart breaking to read how long it’s taking just to get a diagnosis and/ or see a Neurologist or get responses from MS Nurses. There needs to be some national initiatives to ensure that each hospital, each Trust learns from ‘best practice’ and an audit of everything to do with MS treatment/ services would be a good place to start.
Good idea. I wish it would happen but do not hold out much hope. Living in an area of poor care the cost would be astronomical to bring us in line with the better MS centres, but perhaps MSers could get referred elsewhere if we knew where to go.
Yes. If we don't know what is happening it can't be improved.
Reading that feels like fresh air blowing in. I look forward to giving input. Hopefully now that the ball is rolling planning can be done and actual data can be collected to generate a regional comparison. If some academic picks up the ball I've no doubt we'll run with it.
Good idea, can I ask what is an MS CENTRE?
Good idea,a lot of people will have a lot to say.
Brilliant idea. I am at a centre of excellence and am astounded how much you did for your patients versus how little monitoring of disease progression happens at mine. If you did this with the MS-Selfie users could you get one of the research students to do much of the work? One studying for their MD or Masters?
absolutely - an excellent idea. And now (as always) - who to co-ordinate??
The trouble is people with MS suffer so much fatigue, we don't have the energy. The same with charities. I'm sure this is why cancer charities are so much more successful.
Yes.
Extremely interested in comparisons data. I’ve moved from one chaotic hospital to one which is a total shambles and just so understaffed in ms neurology it makes the patient despair.
Thank you for all you have done and still do.
I know it would be complicated and not perfect but some sort of metric comparing outcomes would be good. Time to disability, time to wheelchair bound, time to bed bound, fully catheterised etc would be really good