A-Z

Multiple Sclerosis: friends & family experiences

Looking for information on MS

When a person is diagnosed with a long-term condition, information is often seen as vital to understanding the illness, how it might develop and how people might cope with it. People have different needs for information at different times and the relatives and friends we spoke to varied in the amount of information they wanted, where they preferred to look for it and how active they were in trying to find out about Multiple Sclerosis (MS). Some wanted to ‘know everything,’ and were very active in looking for a wide range of information. Others, partly through fear of what they might find out, were happy to trust that health professionals looking after their relative, ‘know what they’re doing,’ and felt that they didn’t need to know too much.

 

Robin found out about the Citizens Advice Bureau at the local MS Therapy Centre. He got help with completing the forms for Disability Living Allowance and his wife’s payments were increased.

Robin found out about the Citizens Advice Bureau at the local MS Therapy Centre. He got help with completing the forms for Disability Living Allowance and his wife’s payments were increased.

Age at interview: 72
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
The other thing you could do is to join your local MS Therapy Centre. There are about 60 MS Therapy Centres all over the country, they’re charitable organisations and you can, for instance, get oxygen treatment at nearly all of them. 

And they will do other things like chiropody at very low prices, they’ve got trained physiotherapists and of course they’re wonderful for exchanging information. The one thing that you don’t get with MS, as the thing with other diseases is information when you need it. If you go to an MS Therapy Centre you’ll be entirely surrounded by people who’ve either got MS or carers and you can ask any question you want and somebody will have experience and can help you, absolutely wonderful. We picked up from one person in our MS Therapy Centre, the information that the Citizens Advice Bureau would actually do peripatetic visits in other words they come to your home, which we didn’t know, so we got onto the Citizens Advice Bureau and said can you come round and have a look at our thing and they came and looked at my wife and said ‘Hey, you’re a lot worse than you told me you are.’ So they filled in the Disability Allowance forms for her and increased her payments by £50 a week, now that’s a serious improvement.
 

Emma researched MS extensively on the internet. She regularly visits the websites of MS charities.

Emma researched MS extensively on the internet. She regularly visits the websites of MS charities.

Age at interview: 37
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
The first website that I went to, went straight away was MS Society. But to be, as I say, my problem was that I was looking to everything, anything. So the first point of reference was MS you start reading about first symptoms, what could it be? There is a section, it’s divided in sections so you read what it is, the symptoms, why it happens, I also checked into the MS Trust I went to the MS research page. 

But then I, I, became obsessed really and I, it, it was, oh, well research for me was kind of the, my, my first point of view in anywhere I found drugs, it was straight away another one. OK we have a problem we have to find a solution, how can we find a solution, drugs. So what drugs are available. As I say before I was looking into hospitals the [name] hospital, [name] sorry. [Name] hospital. University, when I have, for instance the name of my consultant I actually researched on the Internet to see what, what his curriculum was. So that I can do something! Dr [name] exactly the same. And then previous researches, or, or, any research there, you know, it was just Google ‘MS’ in Internet and looking for, I have researched papers. I have, anything you can imagine. 

For, for me it was something that I did, some, something that I found at the beginning, kind of encouraging was in the MS Society there is a blog or, or, yeah blog where the people have put their experiences and, and ask questions and at the beginning I find that interesting. After a while I’m not quite sure if that was, but at least it was good to know that there were people going through the same kind of thing. And that is why I know that my husband is very lucky at the minute because there are some histories there, my goodness me So it was, it was, about, you know, finding what other things, I was thinking in the future as well. 

So my husband is now not bad, so where can I find a therapist, occupational therapist in the future. And I found that in the NHS website anything. For me, it was anything. I just wanted to know everything. So I can tell you a reference website, for instance, now, the other thing, you know, I have realised that, I calmed down or cannot carry on, one thing that I normally use almost every day or every two days or every three days is the MS Society news website. So, they give you news and another, another website I normally use is the MS Trust, where I found your research those, at the moment are the, are the, ones I normally use.
 

Nick thinks it might be upsetting for him to know too much about MS but is confident that his brother is receiving good care from health professionals.

Nick thinks it might be upsetting for him to know too much about MS but is confident that his brother is receiving good care from health professionals.

Age at interview: 30
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think there’s so much information out there. I mean when there’s sort of stuff in the news you read about different treatments and things that are going on but I don’t really want to get sort of too involved and think, one, because it’s quite upsetting sort of seeing how it affects him anyway, so there probably is a certain amount of denial there but then also, I think the medical people that look after him sort of know what they’re doing. He gets good treatment up in Scotland I think and I don’t know if you can drive yourself mad by trying to research too much into it and you can almost know too much I think, when that can that can affect you even more I suppose. So but yeah, it’s just sort of letting him get on with it I suppose. But yeah.
People used information in different ways but mostly with similar purposes-to improve the life of the person with MS and their own life. People looked for, and found, information about how to manage symptoms, what to tell people, about new medications and treatments, about how to access facilities, aids and adaptations, about finances, dealing with employers and legal matters. As Kay Z said, ‘You needed advice on everything.’

Sources of information were varied and included books, newspapers, magazines, the internet and other people with MS who they had met at support groups, therapy centres or conferences. Charities such as the MS Society, MS Trust, MS Resource Centre were all considered to be valuable sources of information for their websites, publications, newsletters and forums. Some people spoke of getting information from health professionals and sometimes they were seen as the most reliable source.
 

MS Specialist Nurse describes how she finds out the level of knowledge a newly diagnosed person has and how she adapts the information she gives based on their individual needs.

MS Specialist Nurse describes how she finds out the level of knowledge a newly diagnosed person has and how she adapts the information she gives based on their individual needs.

SHOW TEXT VERSION
PRINT TRANSCRIPT
Well usually what we do is get somebody to tell us their story, how have they eventually got to the point where they’re sitting talking to somebody like me. So it allows them to sort of feel comfortable to talk about the process that’s been involved. When I meet somebody for the first time I’ll ask them how much they know and understand about the diagnosis in the first place as opposed to just sitting and telling somebody what a text book diagnosis is. So it is very much geared to the individual. How much they already understand and getting an idea what’s the best way to try and explain it to them.

Some people can be very technical, they want all the science behind the diagnosis. Other people want to know the basics and understand what does it mean for them for the rest of their life. So it is catered to the individual. 

Generally we talk about MS being a long term neurological condition that affects the central nervous system including the brain, the spinal cord and the optic nerve. We can then go on to discuss how we don’t know what causes MS, we don’t have a cure, however we have lots of different treatments that will be geared to the individual’s MS, because it is individual, it is unpredictable, and they can’t compare it to anybody else they may know or somebody else might know. So it’s alleviating a lot of the fears as well and asking them as well ‘what is the fear of having this diagnosis’ and trying to support them with it.
A few people read scientific research papers and a couple used social networking on the internet. The MS Society was the ‘favourite’ source. One or two people mentioned contacting the MS Society, either by phone or internet, ‘straightaway,’ and for some it was definitely the ‘best place’ to get information.

Lots of people we spoke to used the internet to look for information about MS, but not all did, and among those who did, some used it more than others. Many used it to access the MS Society, MS Trust and other health-related websites. Some also used the internet to look for information about applying for benefits, researching the best type of wheelchair or adapted car, or home improvements. 

Reasons people didn’t use the internet were that they found the information ‘scary’ and didn’t want to know too much, or they simply didn’t have enough time. Some people weren’t interested in computers or they weren’t very computer literate at first; Louise Y increased her computer skills and then used the internet a lot. Some people warned of information overload or of misinformation on the internet. Karl and his partner used the internet but they were also ‘wary’ of it.
 

Karl and his partner used the internet to find a physiotherapist, and to get information when she was newly diagnosed. But Karl thinks you have to be careful about information on the web.

Text only
Read below

Karl and his partner used the internet to find a physiotherapist, and to get information when she was newly diagnosed. But Karl thinks you have to be careful about information on the web.

Age at interview: 40
Sex: Male
HIDE TEXT
PRINT TRANSCRIPT
The MS Society has a good website and we’ve used that as a starting point to sort of try and track people down. We’ve managed to track a physiotherapist down through the internet just before [partner’s name] relapse through a combination of looking on internet forums and eventually we found a physiotherapist that specialised in MS. We just phoned her up at the hospital and she was quite surprised as to how we found her [laughs].

I guess people might think you could just get a physiotherapist through ordinary Health Service referral channels. I suppose, it might sound a bit surprising that you would need to try and track a physiotherapist down on the internet. Can you say a bit more about that?

Yeah

And how she responded?

The trouble with physiotherapists is that a lot of them, MS is quite a specific problem and lot of physiotherapists have never seen anything like it before. And a lot of them will deal with sports injuries and things like that. And prior to finding an MS specialist [partner’s name] actually went to a private physiotherapist, just to see what would happen, and the, the gentleman gave her a few exercises but basically said, “I don’t know what to do with you because your body is fit and healthy. There’s nothing to repair, it, it’s a mind thing that basically you’re trying to repair and you’re trying to train your body and it’s a bit too specialist for me.” And that’s what led us to the internet hunt.

It was mainly support through the internet, through their forums, because they had quite a good lively discussion forum on there. There was quite a good section for the newly diagnosed. I think that was where I got most of my, our help from, the information, so it’s mainly useful for that, I think, which was quite good because you could sort of talk to people and ask questions to other people, go on line and everybody was pretty much in the same of sort of position so that was quite useful.

You have to be a little bit wary of information that you get from the internet and the sort of people that are on the internet. You can’t always tell if the information that you are receiving is correct or if the person who you are speaking to is really who they say they are. So you do have to take everything with a pinch of salt. The MS Society website you do trust more than others but there’s some, some very shocking websites out there [laughs].

If you, if you Google for ‘MS cures’ then you come across all sorts of things; lead weights and pyramids and all sorts of crazy ideas and diets. There’s a whole industry, I think, in diets for people with MS with things like gluten free diets and vegan diets and diets where you don’t eat any peas and all sorts of things and you have to take a lot of those with a pinch of salt because they’re always trying to sell you something. Cos you think, ‘Oh, this looks interesting.’ When my partner was first diagnosed we thought, “Oh, maybe gluten’s the thing” and we looked through gluten and they’re trying to sell you a recipe book for gluten free recipes and so we thought, “No” [laughs]. So you do have to be quite careful.

It sounds like you’re quite savvy about that?

I think we’re both quite cynical [laughs] with things like that. Not, not to say that we haven’t tried anything, other things like that. My partner tried acupuncture when she was first diagnosed just to see. It didn’t really do anything, but it was worth a try. 
Availability of information has grown over time. For people diagnosed a long time ago, there was little access to information. ‘When anything crops up now,’ John X says the first thing we do is automatically go and look up and see exactly what the situation is. The worst thing, at the time, was that there wasn’t information.’ Before the internet, teenagers who were caring for parents with MS relied mostly on the other parent for information about what was happening, but they didn’t always get it. Even in recent years, some people have found that they weren’t given enough, or any, information at the point of diagnosis. Betty said, ‘The onus is on you (to find information) and that’s wrong.’ Sometimes it was difficult to get concrete information about what lay ahead because, unlike some other types of illness, each person’s experience of MS can be so different.
 

MS Specialist Nurse explains that most MS services run courses to help people with MS, and their families, understand and manage their condition.

MS Specialist Nurse explains that most MS services run courses to help people with MS, and their families, understand and manage their condition.

SHOW TEXT VERSION
PRINT TRANSCRIPT
I think it’s worth knowing that nationally, I mean I can’t speak for every single area in the country, but nationally MS nurses are generally encouraged to have newly diagnosed courses. So what we do in Huddersfield and what I’m aware in local surrounding areas is that there tends to be a biannual newly diagnosed course. Ours runs for five evenings over five weeks twice a year and we evaluate that each time. But it’s there for the person with MS, their carers, family members, friends, anybody that wants to come along and support them. And what we try and do at that is have some education. You know, we have a, we have an expert comes and talks, we have individual therapists, we do some topical things like the dietician, like exercise. So we try and vary it so that there’s something for everybody. Because we are aware that MS isn’t just about the person with MS but it’s about the other people that are affected by it as well. So I’m sure nationally I would encourage anybody that’s been newly diagnosed to look at their local area and see whether these courses are being run as well.

And do you find that people, relatives and family members do come to that course?

Yes, yes. I mean I would say there’s about 70 per cent uptake. And how we evaluate, we evaluate on day 1. So, and we do it so that it’s the person with MS and the person not with MS. So they each do their own little evaluation. And then at the end of it we re-evaluate as well. And we’ve certainly found that there is evidence that knowledge and understanding has increased from the beginning of the course to, to the end. And we also ask them, “Is there anything else that, that you would like to include?” And the carers tend to get quite involved in those courses. Because I think the person that’s newly diagnosed, and that can mean anything from, say loosely from three, four months up to a year, they’re still quite reticent, they still sit back. Whereas the carer or the, the other person is a little bit more confident and asking questions, “What about this? What about that? How does this work?” So I think that that works quite well because they’re supporting each other in a lot of respects. And the same with children. We’ve had quite a few children come and ask questions about their mums or their dads. So it’s, I think that works well. And I know nationally there are many many areas that do that on a regular basis.

Is there any more specific source of information and support for children or young people who might be involved in looking after a parent?

Some people do, well, there’s a young carers’ group which is run through Social Services. But you’ve got to be 8 and above for that, to be able to join that. But again it’s about ensuring that children are involved, that they do feel that... they get to know me as well as their parent, so that they do feel comfortable. Because these relationships are ongoing for many, many years, so you see the children growing up. So it’s nice if they do get to know you, they’re comfortable with you. There’s some good literature, there’s some nice videos or DVDs, so it’s about making sure that, that they have that if they want it. And quite often just, you know, sending it to them in the post with their name on it as opposed to sending it to their mum or dad, and that makes them feel that they’re involved. So again it’s about an individual, the differences and what different people respond to.
 

Tony didn’t get any information when his wife was diagnosed in Japan. He got in touch with the MS Society and, back in the UK, made the best use he could of the local health services.

Tony didn’t get any information when his wife was diagnosed in Japan. He got in touch with the MS Society and, back in the UK, made the best use he could of the local health services.

Age at interview: 72
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Having been diagnosed in Japan, there wasn’t any information out there. And so I got in touch by telephone with the MS Society from Japan and they immediately sent me out information and so forth. And then I had to start seeking out information myself, and coming back home and dealing, dealing with them that sort of way. So our case of diagnosis of course is different in that it was on a, an envelope read by my wife and by me, not understanding the circumstances at all. An appalling way to found, find out. But you have to understand we were over there and it, we weren’t treated in the same sort of way at all. 

When we came back here and s-, sort of hooked into the [name] medical services, through [hospital] and so forth and the neurological organisation over there, it took us a time to get in but once we were in they held little sort of meetings, co-, information meetings. And I felt that they were pretty, pretty reasonable at, at helping us, helping us along. And so with the Society, with the booklets and so forth and being able to ring them up and talk, and the social and the medical services, I felt we were fairly well looked after. It took us a time, as I said, to get into the system, but once we were in... But then I suppose that’s again the nature of me, of sort of making myself known and maybe making a bit of a nuisance of myself in a sense [laugh]. But once we were in, then, you know, I’ve always been well treated really.
 

Norma found out about the MS Society by overhearing a conversation in a supermarket. She has become a very active member of the Society.

Norma found out about the MS Society by overhearing a conversation in a supermarket. She has become a very active member of the Society.

Age at interview: 70
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
We were sent home as I said and there was just nothing else. I didn’t know what to do or where to go. It was much later down the line that I heard about the MS Society which to this day I really think about because if I had known I could have rang them and asked them questions but I didn’t. However I was in the supermarket one day and there were these two ladies talking, now you’re not supposed to eavesdrop on people’s conversation, however I heard what they were talking about and as they separated and go to their separate aisles I decided I am going to approach one of these ladies and ask her if she has got someone with MS and she said yes her mother had passed away. I said ‘Oh, so where are the organisations?’ and she told me about the MS Society and I contacted them. Shane became a member and we started getting information about MS but before that I just knew nothing. 
 

Anita had nowhere to go for information about her mum’s MS. She hopes it is different for young people now but worries that some still don’t have anyone to talk to.

Anita had nowhere to go for information about her mum’s MS. She hopes it is different for young people now but worries that some still don’t have anyone to talk to.

Age at interview: 37
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
There was no Internet really in those sort of when, when my mum sort of got it. I suppose you look to your parents when you’re that young to sort of get explanations and a lot of information. I don’t think I would have known where to go to. I mean, I guess looking back now perhaps the doctor’s or something like that but, I, it never occurred to me. It, so I think it never occurred to me because I don’t think that support was offered to us as a family. I don’t remember there being any conversation about this is it and we’ve got this person coming to talk to us or anything like that. And I think it would be totally different now because I think I would just Google MS and then I would, I would have that. So hopefully for people and hopefully it’s not like that now. Hopefully people, you know, if, because, because what worries me is that there are, there will be kids like me that will just have had, don’t have a conversation in their family about what does it mean and get misinformed because things like my dad saying, “You’re going to kill you mum”, because we’re having an argument. Actually I’m old enough now to know that that’s not right. But you know, you, there was nowhere that I could go and ask those questions and test that sort of thing with.
People talked about having a different approach from their partner. For some couples, the person with MS was more active in looking for information, but for some it was the other way round.
 

Chez was about to get married when her fiancé was diagnosed. She took on the role of finding out what to expect of life with MS.

Chez was about to get married when her fiancé was diagnosed. She took on the role of finding out what to expect of life with MS.

Age at interview: 42
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I actually went to the MS Society, to find out about the MS. The brain tumour side I actually looked up on the Internet at the time because my husband’s a computer analyst so it helped having the Internet at the time. And basically looked both of them up whereas my husband or my, to be husband at that time didn’t want to know. He was sort of blanking it out. He didn’t want to know anything about what was going on at the time, whereas I’m more of a practical person, I will actually go ahead and I will find out about things. So I knew what to expect within the MS, I knew what to expect if it was a brain tumour. I knew what the life span was with both of them. It gave me just a little bit of hope with both of them and it made it very, very much more easier for me to cope with. [Name] didn’t want to know at the time but I did, and I felt that I had to be the stronger person of, of both of us at the time. And that’s why, why I looked up all the information that I could.
 

Sarah’s husband wanted to find out all he could, but she preferred to take each day as it comes.

Sarah’s husband wanted to find out all he could, but she preferred to take each day as it comes.

Age at interview: 59
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think there were booklets. As I say, my husband was a medical man. He went, certainly not on the internet at that stage we weren’t that user friendly he brought books from the library, he would talk to medical friends we had completely different approaches to it. At the diagnosis I don’t remember us being told anything particular about what would happen next because it would seem that MS is different to different people. I know of another lady who has MS and she goes and they do scans and they sort of say well this is possible, my husband didn’t want to have anything like that at all at that time he wanted to read and find out everything, my attitude was let’s take each day as it comes, I’m up for whatever comes this way, in my naivety at that stage let’s just take it as it goes. But the actual information given out, no I think perhaps, we had enough to chew on that day just being told. I know my husband was, you know, in close contact with his GP and he seemed happy with what was going on. They talked between themselves I was happy just to trot along on the side lines.
 

Emma’s degree in molecular biology helped her understand all she was reading about MS. She passed on the information to her husband, to help him make decisions.

Emma’s degree in molecular biology helped her understand all she was reading about MS. She passed on the information to her husband, to help him make decisions.

Age at interview: 37
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
We went through a period of ‘What do we do?’ I tend to read a lot. I got a degree in molecular biology, in Spain, so it’s not, I’m not a specialist because I haven’t followed that career but I have got the background, for me it’s not easy but I’m quite familiar with scientific information with especially all the funny words, ‘immuno-suppressants ‘ those are quite normal for me. I was, doing for six years basically. So I tend, basically, at the time I was reading anything, everything. And it, I mean, it was, I don’t know how my boss didn’t kick me out to be honest because it was quite obvious that my performance wasn’t as usual [laughs]. But it’s just something that you cannot stop. I personally cannot stop, for me, I have the scientific mind kind of thing and I want to know, I want to know, and I find a word that I don’t know what it is and that links you to more information and, and that links you to more. I never stop. I was saying, I’m doing a thesis actually and a thesis with this and so I was reading a lot My husband is not like me in any way, he’s not very, he’s more into speed and planes and all that, so basically I was telling him but ultimately I am the steward ? It was him that has to take the decision because I’m, because it’s his body basically. So for me I give you all the information, I read for you because you, I know that you don’t want to read, I read for you, I tell you everything and then you have to make the decision.
 

Anthony didn’t want to read too much because he knew that he would tend to ‘pick out the worst bits’ and that would ‘put him on a downer.’

Anthony didn’t want to read too much because he knew that he would tend to ‘pick out the worst bits’ and that would ‘put him on a downer.’

Age at interview: 43
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
We have found the MS Society website useful, particularly when people talk about their experiences and the overriding thing that you find is everybody is different with it. You know, the old phrase, no two people are, you know, affected the same, boy, does that apply to MS. There is no two cases that are the same, although there are similarities, and it’s finding people who’ve got similar, where the condition has manifested itself in a similar way, and how it’s affected them and what they’ve found to help is useful. 

I would have to say honestly, that my wife looks up on the internet more than I do but that’s not to say that I haven’t looked up myself and read quite a bit on the subject because we’re both big readers and we must have every book that’s ever been published on the subject in the house. And what will often be the case is that my wife will pick out some relevant point from a book and I will read that section and keep going. 

There is another side to it whereby I don’t want to read too much about it because I think it’s natural to pick out the worst bits of everything that you read and realise that, you know, not all of this is going to apply to, to my wife. Yes, she, has her problems with it but, like I said before, there’s a lot of people who, for whom MS has made their lives a hell of a lot worse and I find it, to be honest with you, quite difficult to read sometimes and certainly puts me on a downer. And that’s probably the reason why I haven’t read up on everything as much as my wife has. 
Social networking on the internet was important for one geographically isolated person and for one young person. Mike talked about getting information about MS (while trying to avoid ‘information overload’) and also about his involvement with an MS network called, ‘Shine on Scotland.’ Through social networking about her own experience of growing up with a parent who has MS, Sarah contributes to raising awareness about MS and to creating an identity for young carers.
 

Social networking has enabled Mike and Jennifer to talk to other people with MS. Mike is involved with a network in Scotland called “Shine on Scotland.”

Social networking has enabled Mike and Jennifer to talk to other people with MS. Mike is involved with a network in Scotland called “Shine on Scotland.”

Age at interview: 51
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Most of our information has come through MS Society our local, our local MS branch, our MS nurse has been very, very helpful and we’re quite lucky that the GP that we are actually signed up to in [place name] Surgery knows quite a bit about MS herself so she can relate to the way Jennifer is. And basically talking to other people who we have got to know via using social networking and stuff like that. We’ve basically gleaned most of our information from there but primarily from the MS Society and from our MS Nurse and the local MS branch they’ve been very helpful and very supportive. 

Once Jennifer first got the diagnosis we were both on, on the net and we all know what the world wide web can do, it can give you information overload and there have been all sorts of places that have provided us with information. From my point of view I searched several sites and there is so much information available that it can become quite overwhelming so I tended to concentrate mainly on the MS Society. Also we have got involved with a network called “Shine on Scotland”. We’ve got to know a lad called Ryan McLoughlin who has been campaigning for the Vitamin D council, we’ve got to know the family as well because his, his mother suffers similar disease to Jennifer. We’ve got to know them as a family, we’ve met them in person and basically what they have actually done is to set up their own social site which is very similar to Facebook which is called “Shine on MS.” We’ve got involved, we’ve got signed up to that as well and we’re beginning to sort of meet like minded people over the net, like minded people and learning about their experiences as well.
 

Sarah, whose mother has had MS for the whole of Sarah’s life, thinks social networking websites are the best way to raise awareness about MS and to provide support to young carers.

Sarah, whose mother has had MS for the whole of Sarah’s life, thinks social networking websites are the best way to raise awareness about MS and to provide support to young carers.

Age at interview: 17
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
How has the Internet been helpful to you in your lives with MS?

Sarah: Well, I’m, obviously I’m a, being 17 [laughs] I’ve got, I’ve got my laptop and I’m nearly always on it [laughs]. It’s I ...

Let’s just talk a bit about what you do and...

Sarah: I mean, having, I uploaded that video to YouTube about young carers, that’s one of the biggest things is well I mean, a lot of people seem to think that was a massive thing putting that video on YouTube but I, I mean, it’s not, it was just something, it’s like I thought when I was 12, I thought, “Well everyone used the Internet now, everyone uses YouTube, it’s an avenue that I can use to try and make a bit more awareness”. And it just worked basically. And it’s one of those things like I know that my young carers’ group the people that went into schools use that to show to the kids to try and conjure up. It’s only words, all of it’s just words, but I mean, it did conjure up an emotional response to people.

Ray: From something in the background, possibly...

Sarah: Yeah.

Ray:...in the background as well. 

Sarah: It’s like 'Concrete Angels', something like that and it, and it’s, it does, it, it, it’s the only way that you’ll access people of my age directly. I know that obviously not a lot of us, there are some of us that aren’t on Facebook or any other social networking site but even things like, you know, the MS Society website, I go on Children’s Society and look at the, all the different young carers’ groups because I’m trying to think about creating a national identity for young carers. The researching MS, if you go on the Internet and you look at the MS website even Twitter have a load of the MS Society, they have the national, they have the one from the US, they have all the MS, even I created one locally, I’ve created a Facebook and Twitter page for our MS Society so that people can see what we’re doing. And it’s, I think the Internet for me, despite, you know, I’ve had a lot of bad will come over it, the, the avenue of accessing the people, like especially with MS quite a lot of the time they can’t necessarily go out a lot or they’re too fatigued to, and it’s that, that, extra way of being able to get into someone’s life and, you know, you’re not alone, look at this, look at, look at, you know, this site., You know, you can see the statistics for this. And I think being able to research it online is good.
For some people, having information was a source of power which helped them to get what they needed. Having met hundreds of people with MS, Ray concludes that, ‘The more you know about it, the more you can defend your corner.’
 

Paul talks to health professionals, and uses the internet extensively, to find out things that will help him understand his wife’s experience and look after her as well as he can.

Paul talks to health professionals, and uses the internet extensively, to find out things that will help him understand his wife’s experience and look after her as well as he can.

Age at interview: 56
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I still wanted to know what the impact was going to be and, I’m searching for answers and I couldn’t get any. I got very frustrated with it, to such an extent that on one occasion when she was in a rehab part of the hospital, one of the nurses picked up how I was frustrated and suggested we rang the consultant. I said, ‘The guy is busy with his patients. He doesn’t need me ringing him,’ She said ‘Well, what do you want to know?’ So, I explained what I wanted to know. She said, ‘The one person who can tell you is this guy. Ring his secretary.’ So, I rang his secretary and she was brilliant, arranged for me to go and see him, I went to see him, he said, ‘Right what do you want to know?’ I said, ‘Well, I want to know what’s going to happen.’ He said, ‘Well, everybody’s an individual and with MS it affects different people in different ways’, but he said, ‘Basically there’s the three types’. And so what he actually did then…he says, ‘Has anybody explained to you about how we diagnose it?’ I said ‘No,’ he said ‘Have you seen the MRI scan?’ I said, ‘I’ve seen them but nobody’s ever explained to me what they are.’ Because, when you’re there as a carer or a support, I initially used to sit back let them talk to my wife let her ask the questions and try and prompt her. I didn’t think it were my place to ask questions. And so I’ve sat back. I probably have had the opportunity but not felt as though and… the doctors’ attitude then started to change. They started to ask me then if I had any questions because I’ve done this in later stages. But, he put the MRI scan up and said, ‘Right, what do you want to know?’ I said, ‘What’s that big blob there in her brain? Is it a tumour?’ And he just laughed. He said, ‘That’s her eyeball.’ So, we laughed and then he explained about the plaque. I could see the plaque and how it was affecting her body. And, then, I started to get an understanding. I didn’t have the answers to what the problem was, but I started to have an understanding about how the body was functioning and not functioning and how things were being affected. So, that’s how I started to get involved in it.

How have I found out a lot of the information? I use the web. MS Society produce information, but it’s more general information. When it comes to things like form filling for benefits, you search…I did a search on the internet and found out that, when councils and authorities ask you to fill in forms for getting adaptations etc they ask for my wife’s income, they asked for my income, they asked for my son’s income, they asked for my daughter’s income. What relevance is… the stance I’ve always had is: my wife is a person in her own right. I choose to do the caring and I… when I’ve had problems with caring I’ve always taken that stance. My wife knows I wouldn’t leave her high and dry. However, she’s an individual in her own right. I do the caring through choice, other people are paid as a job to do it and therefore I’ve always said, ‘Do your job.’ Whatever I do is a bonus.

We shouldn’t have to fight like this. But you’ve got to fight it. And you’re an individual, you have rights. The person you care for has rights, as an individual. And you don’t have to do what they say: [if] the rules need changing, argue and change the rules. There’s people out there to help and there’s loads of information on the web. The form filling… I got mine from a council in another part of the country about how to fill forms in, saying just fill it in for the person who’s claiming the benefits, the rest of you it doesn’t matter. 


Last reviewed March 2020.

donate
Previous Page
Next Page