Are any of you living in poverty or a deprived neighbourhood? If yes, have you been offered any help with these two domains of your life, which impacts MS outcomes?
How interesting. I have an MSc in this stuff (sort of - my MSc is in Food Policy and I wrote my dissertation on UK household food insecurity) but I never really thought about how "deprivation" might affect me. I'm enormously privileged. I attended a fee paying school, and had the means to do three university degrees (the first two were Political Science and Law). I ended up working in local government like the bleeding heart liberal I actually am, not the cut throat lawyer my parents wanted me to be.
I was living in one of the most deprived LSOAs in the country at disease onset. A large, notorious council estate. It was close to work and uni and the rent was at a level that enabled me to save some money towards a deposit. Then I used that deposit to buy a flat in another slightly less deprived area, still as close as I could afford to my central London job. My parents ended up giving me the rest of my deposit.
I've since moved within the same area as I absolutely love it. I have close friends nearby. It is a "rapidly gentrifying" area and my friends are all mid-career professionals who also own their own homes.
Where I live now I'm the only owner-occupier. I'm in a two bed ground floor Victorian conversion. My upstairs neighbours are private tenants. The houses on either side have been converted into HMOs. I couldn't tell you how many people live there but they are seriously overcrowded.
The area is grimy. But I'm very involved in my local community. I have not been offered social prescribing but I imagine I do the very things they would recommend - I am a Run Director at my local parkrun and I volunteer with GoodGym. I keep trying to persuade my local GP surgery to become a "parkrun practice" but I don't think the doctors are that sold on running. It is a very good practice though.
Anyway I'm off to volunteer at parkrun now in my beautiful local park - another thing my area does very well.
So important to raise this now as disabled people's social security incomes are being attacked in the UK (and the notion of social 'security' is being undermined). This research should be required reading for the Labour government that is proposing savage cuts to those in receipt of Personal Independence Payments (PIP). I saw figures the other day that indicated that those with MS who have struggled to receive this benefit (it is very hard to claim) are among the most vulnerable to losing it with the proposed change of rules. This will plunge many thousands into poverty with dire consequences not just for individuals but for the health of our society. Write to your MP to oppose these cruel cuts.
I have MS but I am so lucky as I am comfortably off - I know I would be more disabled without access to, for example, good nutrition and a warm home. I don't have to live with the daily stress of living on a low income, we all know that stress impacts our symptoms.
I'm from a comfortable middle class background and I'm educated to post graduate level. I have multiple skills (such as being trilingual) but I also have multiple sclerosis. The latter is what keeps my income as a self-employed teacher/translator very low. Trying to manage my day to day life with MS (inspired by the author's marginal gains approach) has led to an increasing % of my limited income going on various medical treatments and accessories. I can't complain, cos my partner earns well and picks up the slack when necessary, but I'm sick of living in an ableist world where employment options are so limited for the nominally disabled such as myself.
Very important topic to bring out into the open. And the extra financial costs of having a disability cannot be underestimated. I’m lucky enough to have been able to fund adaptations needed to my home, and a collection of mobility aids beyond what might be provided by health or social services. I know that’s not the case for everyone. And I worry about the impact of the current proposed changes to disability benefits for people in the UK and what that might mean. Not to mention how living in poverty and deprivation may crush the ability to advocate for yourself, which unfortunately seems to be necessary to sometimes access the resources needed to help manage a condition like MS. Thank you for raising these issues 🙏
This is a fantastic article the photograph shows an uncanny resemblance to where I live and how the area has become,I have taken to living a very solice lifestyle to avoid any interaction with my neighbours it's become a flipping drugs capital I need not elaborate how this impacts my m.s but I bash my head on the brick wall trying to receive any help moving away from this area. All that's left to do is pray and hope for better times ahead.
The only part I disagree with is poverty affecting the access to exercise, sure they can't afford to go out and buy home exercise equipment(treadmill, stair climber, or bicycle/tricycle) but as long they can still do so, walking is free.
When you are able to walk of your own ability. I need help with physical activity or physical therapy, one has to be able to pay for it, and many times the expense is more than is attainable. Unfortunately physical therapy in many areas is still thought of as more of a luxury, or a limited time requirement than a vital necessity. Insurance and many doctors figure that family or friends can take care of the needs of the afflicted. When there are no family, partners, significant others, nor friends available to provide the assistance, there is very little that can be done to rectify or mitigate this. I lost everything and now live any nursing facility, and the only way to get regular physical therapy is to be admitted to the hospital with anything related to my multiple sclerosis, and I don't have clinical relapses anymore. If I did my insurance would only pay for 10 days of physical therapy at the most. Nowadays I am relegated to ROM (range of motion) exercises only which do very little for me. It's just the nature of health care these days--which is not really care... it's just insurance, which is all about money and not really holistic. There are many many other people who need much more help and they are just left by the wayside. Also I'm not trying to be rude, but there seems to be a purveying sentiment that poverty is something that can be mitigated through will if people just try hard enough. It's actually a vastly more complicated situation for most people than just putting forth more effort. I'm not saying that that is what anyone here is saying, and I do understand that exercise for the most part can be attained freely. Using myself as an example, when my disease was getting worse I still needed to work and bring home a paycheck to take care of the bills, and with this terrible disease I needed more money to go towards tackling it, and there was little time to do very much else other than to try to stabilize the disease while also making sure I didn't lose my job, not to mention having to fight the massive fatigue I had to deal with constantly. It's so complicated and difficult that the medical community needs to put on a more concerted effort to deal with it, and the resources/manpower are just not there as well.
I think there are many of us in this situation in the states. At one point, I was referred to physical and occupational therapy, but it was so distant that I was absolutely exhausted. I needed it at home, which is impossible. And I empathize about how one can lose everything. I just ejected my supposed significant other. It is terrible to be living with somebody but feel that you are alone. An unfeeling partner can feel put upon by the restrictions of this disease and the situation deteriorates. I am hoping things will be all right, but I do not have a friendly neighborhood. Therefore, the loneliness issue certainly applies to me, despite the area’s relative wealth and my extensive education.
Unfortunately people living in deprived areas are often also deprived of access to nature. A lot of people even in London live more than 1km from their nearest green space. And there are other factors that may prevent access, for example there is one green space near me I try to avoid because it is a hotspot for drug dealing, muggings, sexual assault and stabbings. There is one local running group here that was set up by a black man with the aim of making running safer for other young black people - if you are running in a group you are less likely to be challenged if you stray off your home turf. He is good at getting the group invited to take part in events - another barrier to participation in sport.
Well it depends on your local area: are you able to walk, or are you surrounded by busy roads? Is it safe to walk around outside with stick, or are you easy game for muggers? I understand you probably don't intend for this comment to be churlish and insensitive, so hopefully you'll reflect on my thoughts and respond with grace.
This comment shows how little you understand. Most people with ms struggle for years clinging to employment while fatigue steals everything in their lives.
I'm not sure if anyone can raise enough money to address the social determinants of health, including deprivation and poverty. This is a political issue that needs to be addressed from the top and the bottom. In the UK, the current Labour Government may be exacerbating the situation with its cuts to benefits and failure to implement policies that reduce income inequality and redistribute wealth.
My mother, who also had MS, as well as my family did experience poverty. My mom couldn’t work her difficult job as a CNA (certified nursing aide), and after she quit, she was denied Social Security Disability Income. As a couple more of my siblings moved out, things eased somewhat financially. And my dad was able to add on to the old family home and update most of it. But my mom was diagnosed in 1979, and she didn’t even get on a DMT until many years later. Both my parents were old-school in that whatever a doctor told you, you accepted it. I couldn’t even get my mom to go with me to support group meetings. They weren’t stupid, but they were not well educated. Worst of all, they both smoked for 50 years; in fact, lung cancer is what took my mom away from us. She did quit, but it was much too late. I know that I am extremely fortunate to have access to my neurologist, who is an MS specialist in a clinic with other specialists, at the University of Texas-Southwest, or UTSW. It’s located in downtown Dallas, but is well worth the drive. My family and I have been in far better circumstances than my parents. Both my husband and I have college degrees; husband has an MBA as well. Both our daughters are also college graduates and my younger one has a masters in social work. My oldest is a degreed registered nurse. But this article really struck home for me as I remember how helpless I felt to help my mom.
Not if access technology becomes a basic human right and everyone has access to it. For example, broadband should become a utility and everyone should have a device that accesses the internet.
An ugly topic. Never said I wasn't lucky. Started working at an early age on farms, and earned Social Security credits, unknowingly to be priceless in the future. Was "abused" by a higher level employer who got sued (stretching the definition of "luck"?) Had an empathic aunt who was able to help. Yes, things fell into her lap that did not fall into others' laps, but she really worked to take those things and make larger things happen too. A good spouse fell into my lap as well. But I never said that MS wasn't an uncalled for curse of being unlucky.
Where do you start? I have to say it begins with some degree of intelligence and education sufficient to allow you to notice yourself honestly, see how things work and want things to be a certain way, and be willing to struggle to try to make those things happen. Sadly, the truth is some people don't get the required background to just be able to know and care, and make these things happen. Odds are stacked against them from the start. And it is NOT THEIR FAULT. But somewhere responsibility has to be input. Who is going to make a difference, and how? 5 years old may be too late! And I am only talking about our society (s). What happens elsewhere? Oh my god!
How interesting. I have an MSc in this stuff (sort of - my MSc is in Food Policy and I wrote my dissertation on UK household food insecurity) but I never really thought about how "deprivation" might affect me. I'm enormously privileged. I attended a fee paying school, and had the means to do three university degrees (the first two were Political Science and Law). I ended up working in local government like the bleeding heart liberal I actually am, not the cut throat lawyer my parents wanted me to be.
I was living in one of the most deprived LSOAs in the country at disease onset. A large, notorious council estate. It was close to work and uni and the rent was at a level that enabled me to save some money towards a deposit. Then I used that deposit to buy a flat in another slightly less deprived area, still as close as I could afford to my central London job. My parents ended up giving me the rest of my deposit.
I've since moved within the same area as I absolutely love it. I have close friends nearby. It is a "rapidly gentrifying" area and my friends are all mid-career professionals who also own their own homes.
Where I live now I'm the only owner-occupier. I'm in a two bed ground floor Victorian conversion. My upstairs neighbours are private tenants. The houses on either side have been converted into HMOs. I couldn't tell you how many people live there but they are seriously overcrowded.
The area is grimy. But I'm very involved in my local community. I have not been offered social prescribing but I imagine I do the very things they would recommend - I am a Run Director at my local parkrun and I volunteer with GoodGym. I keep trying to persuade my local GP surgery to become a "parkrun practice" but I don't think the doctors are that sold on running. It is a very good practice though.
Anyway I'm off to volunteer at parkrun now in my beautiful local park - another thing my area does very well.
So important to raise this now as disabled people's social security incomes are being attacked in the UK (and the notion of social 'security' is being undermined). This research should be required reading for the Labour government that is proposing savage cuts to those in receipt of Personal Independence Payments (PIP). I saw figures the other day that indicated that those with MS who have struggled to receive this benefit (it is very hard to claim) are among the most vulnerable to losing it with the proposed change of rules. This will plunge many thousands into poverty with dire consequences not just for individuals but for the health of our society. Write to your MP to oppose these cruel cuts.
I have MS but I am so lucky as I am comfortably off - I know I would be more disabled without access to, for example, good nutrition and a warm home. I don't have to live with the daily stress of living on a low income, we all know that stress impacts our symptoms.
I'm from a comfortable middle class background and I'm educated to post graduate level. I have multiple skills (such as being trilingual) but I also have multiple sclerosis. The latter is what keeps my income as a self-employed teacher/translator very low. Trying to manage my day to day life with MS (inspired by the author's marginal gains approach) has led to an increasing % of my limited income going on various medical treatments and accessories. I can't complain, cos my partner earns well and picks up the slack when necessary, but I'm sick of living in an ableist world where employment options are so limited for the nominally disabled such as myself.
Very important topic to bring out into the open. And the extra financial costs of having a disability cannot be underestimated. I’m lucky enough to have been able to fund adaptations needed to my home, and a collection of mobility aids beyond what might be provided by health or social services. I know that’s not the case for everyone. And I worry about the impact of the current proposed changes to disability benefits for people in the UK and what that might mean. Not to mention how living in poverty and deprivation may crush the ability to advocate for yourself, which unfortunately seems to be necessary to sometimes access the resources needed to help manage a condition like MS. Thank you for raising these issues 🙏
This is a fantastic article the photograph shows an uncanny resemblance to where I live and how the area has become,I have taken to living a very solice lifestyle to avoid any interaction with my neighbours it's become a flipping drugs capital I need not elaborate how this impacts my m.s but I bash my head on the brick wall trying to receive any help moving away from this area. All that's left to do is pray and hope for better times ahead.
The only part I disagree with is poverty affecting the access to exercise, sure they can't afford to go out and buy home exercise equipment(treadmill, stair climber, or bicycle/tricycle) but as long they can still do so, walking is free.
When you are able to walk of your own ability. I need help with physical activity or physical therapy, one has to be able to pay for it, and many times the expense is more than is attainable. Unfortunately physical therapy in many areas is still thought of as more of a luxury, or a limited time requirement than a vital necessity. Insurance and many doctors figure that family or friends can take care of the needs of the afflicted. When there are no family, partners, significant others, nor friends available to provide the assistance, there is very little that can be done to rectify or mitigate this. I lost everything and now live any nursing facility, and the only way to get regular physical therapy is to be admitted to the hospital with anything related to my multiple sclerosis, and I don't have clinical relapses anymore. If I did my insurance would only pay for 10 days of physical therapy at the most. Nowadays I am relegated to ROM (range of motion) exercises only which do very little for me. It's just the nature of health care these days--which is not really care... it's just insurance, which is all about money and not really holistic. There are many many other people who need much more help and they are just left by the wayside. Also I'm not trying to be rude, but there seems to be a purveying sentiment that poverty is something that can be mitigated through will if people just try hard enough. It's actually a vastly more complicated situation for most people than just putting forth more effort. I'm not saying that that is what anyone here is saying, and I do understand that exercise for the most part can be attained freely. Using myself as an example, when my disease was getting worse I still needed to work and bring home a paycheck to take care of the bills, and with this terrible disease I needed more money to go towards tackling it, and there was little time to do very much else other than to try to stabilize the disease while also making sure I didn't lose my job, not to mention having to fight the massive fatigue I had to deal with constantly. It's so complicated and difficult that the medical community needs to put on a more concerted effort to deal with it, and the resources/manpower are just not there as well.
I think there are many of us in this situation in the states. At one point, I was referred to physical and occupational therapy, but it was so distant that I was absolutely exhausted. I needed it at home, which is impossible. And I empathize about how one can lose everything. I just ejected my supposed significant other. It is terrible to be living with somebody but feel that you are alone. An unfeeling partner can feel put upon by the restrictions of this disease and the situation deteriorates. I am hoping things will be all right, but I do not have a friendly neighborhood. Therefore, the loneliness issue certainly applies to me, despite the area’s relative wealth and my extensive education.
Unfortunately people living in deprived areas are often also deprived of access to nature. A lot of people even in London live more than 1km from their nearest green space. And there are other factors that may prevent access, for example there is one green space near me I try to avoid because it is a hotspot for drug dealing, muggings, sexual assault and stabbings. There is one local running group here that was set up by a black man with the aim of making running safer for other young black people - if you are running in a group you are less likely to be challenged if you stray off your home turf. He is good at getting the group invited to take part in events - another barrier to participation in sport.
Well it depends on your local area: are you able to walk, or are you surrounded by busy roads? Is it safe to walk around outside with stick, or are you easy game for muggers? I understand you probably don't intend for this comment to be churlish and insensitive, so hopefully you'll reflect on my thoughts and respond with grace.
This comment shows how little you understand. Most people with ms struggle for years clinging to employment while fatigue steals everything in their lives.
Wow.
There's decades of research on the topic.
I agree totally but how are you raising money to support us all ?
I'm not sure if anyone can raise enough money to address the social determinants of health, including deprivation and poverty. This is a political issue that needs to be addressed from the top and the bottom. In the UK, the current Labour Government may be exacerbating the situation with its cuts to benefits and failure to implement policies that reduce income inequality and redistribute wealth.
My mother, who also had MS, as well as my family did experience poverty. My mom couldn’t work her difficult job as a CNA (certified nursing aide), and after she quit, she was denied Social Security Disability Income. As a couple more of my siblings moved out, things eased somewhat financially. And my dad was able to add on to the old family home and update most of it. But my mom was diagnosed in 1979, and she didn’t even get on a DMT until many years later. Both my parents were old-school in that whatever a doctor told you, you accepted it. I couldn’t even get my mom to go with me to support group meetings. They weren’t stupid, but they were not well educated. Worst of all, they both smoked for 50 years; in fact, lung cancer is what took my mom away from us. She did quit, but it was much too late. I know that I am extremely fortunate to have access to my neurologist, who is an MS specialist in a clinic with other specialists, at the University of Texas-Southwest, or UTSW. It’s located in downtown Dallas, but is well worth the drive. My family and I have been in far better circumstances than my parents. Both my husband and I have college degrees; husband has an MBA as well. Both our daughters are also college graduates and my younger one has a masters in social work. My oldest is a degreed registered nurse. But this article really struck home for me as I remember how helpless I felt to help my mom.
In my opinion your belief in the future for technology-based approaches to healthcare will further disadvantage the groups you mention here.
Not if access technology becomes a basic human right and everyone has access to it. For example, broadband should become a utility and everyone should have a device that accesses the internet.
They may have it - I'm sure they will, but I'm talking about ability to self-manage through it.
An ugly topic. Never said I wasn't lucky. Started working at an early age on farms, and earned Social Security credits, unknowingly to be priceless in the future. Was "abused" by a higher level employer who got sued (stretching the definition of "luck"?) Had an empathic aunt who was able to help. Yes, things fell into her lap that did not fall into others' laps, but she really worked to take those things and make larger things happen too. A good spouse fell into my lap as well. But I never said that MS wasn't an uncalled for curse of being unlucky.
Where do you start? I have to say it begins with some degree of intelligence and education sufficient to allow you to notice yourself honestly, see how things work and want things to be a certain way, and be willing to struggle to try to make those things happen. Sadly, the truth is some people don't get the required background to just be able to know and care, and make these things happen. Odds are stacked against them from the start. And it is NOT THEIR FAULT. But somewhere responsibility has to be input. Who is going to make a difference, and how? 5 years old may be too late! And I am only talking about our society (s). What happens elsewhere? Oh my god!