Most people with a chronic health problem will, over time, become very knowledgeable about their condition and how best to manage it. Much more than in the case of acute illness, patients are likely to become experts in their own right and gather information from a wide range of sources. However, when the condition is relatively rare in the general population - as is the case with many health conditions covered on this website – it can be difficult to find good quality information about it.
M is married with one child and is self-employed. Ethnic background/nationality: Jewish
I was very lucky always getting the best medical treatment, and virtually easy access to the highest authority in the neurological world, both in Israel and the UK. Information, since I think since the gene was identified as DYT1 which is the mutation common amongst the Ashkenazi Jews. Information was rather easily available.
Obviously before you go into brain surgery you always have one more questions. I did speak to a few patients who underwent the operation before me, before I had the first one. And, it was always helpful and reassuring and, and, good results. But it wasn’t, if you know what information to look for, it’s very easy to find it, relatively easy. But it takes some investigation and, and trying to activate all the different information agents that you’ve got. But we were able to gather a relatively good information. Albeit we gambled on the wrong horse in terms of the first operation.
In retrospect there’s no comparison between the first operation, which was done privately and which cost us a lot of money, which was covered by the insurance, but we paid an absolute fortune and received a five star service with terrible results. Whereas the second operation which was done in this amazing place, in [hospital B], which is a remarkable centre. I still go every now and again to get the system tested and to get the pacemaker. That’s where they do the fine tuning, so they’re still doing the fine tuning. It’s minor twists of it, but just to get absolutely the most of it, it’s such a great sense of team work, and, dedication and they will go all the way just to make sure that you get the best service.
Dr Koch is a retired pathologist. Dr and Mrs Koch have two grown up children. Ethnic background nationality: Jewish
If the blood is tested and they find out they are a carrier when they’re pregnant, do they then test the father?
Oh absolutely. Now we go into full scale thing, it goes into full scale operation. Whereas it might take four weeks for them to get an answer it’s now done in four days. Obviously there’s an urgency here. We don’t know, nobody knows at this stage if both parents are carriers. So we do the mother, and we do the mother, the full works, we give her the biological testing, and we give her the DNA. We do the father the same way. And then the results are looked at within four or five days, and if there is, if they are both carriers, now it depends on the semester she’s in, whether she’s passed eleven weeks or not. You can’t do the test before eleven weeks. It still isn’t certain that the foetus, at this stage it will be an embryo probably. The embryo is a Tay Sachs embryo because it could be one of the … We’re not going to be worried at that stage about carriers obviously. Only the full bloodied Tay Sachs disease. Then she’s asked, whether she wants counselling. It’s highly suggested. And she’ll either come here or may be somewhere else, but usually it’s so few nowadays they come here. And we will tell then, now what you’ve got to do now is etc… Do you want me to describe it. I will. “It’s your decision, but we’d like you to have an in vitro test at eleven weeks, if you want it at eleven weeks, or sixteen weeks.” Eleven weeks it’s a CVS is a chorionic villus sampling. At sixteen weeks you can’t do it before this it’s an amniocentesis. Of the two the amniocentesis is preferred, because that’s the least invasive type of requirement. A CVS is invasive. It’s obviously done through the vulva, it’s down in, that sample is scraped? from where the actual embryonic tissue is on the wall of the uterus to get the chorion and all the rest of it, and there is a higher risk of causing a termination that way. It’s about 1% but it’s a risk.
The amniocentesis, and we always tell them information, if you’re going to have an amniocentesis you sit and watch the screen. Make sure the person doing it is a consultant or at least a registrar who’s doing it. Watch the screen, and watch what he does, because if he puts the needle into the foetus that’s not a very good idea. And they are more aware of doing it carefully if somebody’s watching it, and has got a little bit of knowledge. Do you understand what I’m saying? So and that cuts the risk down of a termination occurring naturally, down to 0.00%. It’s very, very low. Now if it’s all clear, it’s all clear.
Unfortunately if it isn’t then the patient has a choice. They can go the full hog and have a Tay Sachs child if they are religious or they have a moral view that it’s not the right thing to do and will take the risk. It’s their decision. No one will force them to do anything. Their choice.
But once they make the choice, the choice is made. And if they have the child we now tell them what the situation’s going to be. And how pretty rough it’s going... because they don’t really know what it’s about and it is… I even show them a film. I made my own films to highlight this particular thing.
And they’re on their own, because there is no NHS facility for dealing with it, this is terrible, there was never in our day. We only allow the consultants …we only allow the child to be taken to a hospital area, because the consultant said if we do they’ll want to study the situation and since there was no, no harm being done to the child at a
Several people we talked with said they had been dissatisfied with the amount and quality of the information they received from health professionals. In some cases, this was due to GPs or consultants not having encountered anyone else with the condition and therefore being ill-equipped to advise their patients. In these cases, health professionals seemed to learn more from their patients than their patients from them.
Have you sort of like found out a lot about Crohn’s?
Yes, when I, when I first got diagnosed my paediatrician didn’t actually know anything. I was his first, I was his first patient with Crohn’s disease, so I actually got a lot of literature from the Crohn’s organisation, the LACC. And I learned, and I passed on what I was learning to my paediatrician. So I was kind of educating him, more than anything really at the time. And yes, I know quite a bit, and I’ve been very privileged because of doing the stand up. I think I’ve been very privileged in that I’ve been afforded a few opportunities that other people wouldn’t have got. So I took part in a documentary for the community channel which was called Science and Me, Crohn's Disease and I got to meet sort of five scientists, all working on cures for Crohn’s and got to hear about different theories at sort of grass roots level which was fascinating and fantastic.
And it seems to me from my layman’s position that all of them have credence to their idea. You know, there’s one idea about map bacteria which is supposed to be a bacteria that’s in milk as well as a lot of other things. Now when I was a kid I drank a tremendous amount of milk in my primary school, you know, in primary school days. And when the other kids, you know, when you used to get, have bottles of milk, before Margaret Thatcher stole them back. Well we used to get them, I used would drink the other, you know, two or three of the other kids milks. So I think sometimes well maybe there was something to that, because I did, yes, I had a really big thing for milk, I’ve got something call Crohn's Disease there’s a possibility, but there are various other possibilities as well.
It seems to me, like I said, that there’s weight in all of them, and actually I remember saying to one of the scientists, you know, “It seems like you all have something right. Have you ever considered that may be Crohn’s is a result of a combination of these factors? And not just one alone.” He said, “Oh I never thought about that.” But obviously they won’t meet together because they all want to be the person who finds the cure or the cause for Crohn's Disease and they need to get the research grants, and, so it just stays as a bunch of separate people, all trying to prove their theory. Just a bit unfortunate really.
Age at interview:
Rosalynde is a retired medical representative. She is married and has grown up children. Ethnic background/nationality: Jewish
When you were given the diagnosis did the doctors give you enough information at that point?
No, nothing like it enough. First of all I asked the consultant I saw what diet I should be on. And he said, “Oh its just trial and error.” Now it is trial and error to an extent but - because you speak to some people suffering from Crohn’s and they can have such and such, whereas you can’t - but there are certain things that most Crohn’s sufferers know don’t agree with them. I mean we, my husband and I always have fresh orange juice at breakfast and the first time I had it, I just wanted to die. It was so painful. Now when I’ve spoken to the other sufferers they say, “Oh yes, fruit juice is out.” Well that must filter through to the doctors. And potatoes are another one. Wheat to a certain extent. I mean, you know.
I was then sent to a dietician, I had forgotten about that, who was absolutely useless, absolutely useless. I think a lot of people and I’ve certainly seen it from the web, are... combine losing weight with diet, even though it’s known that Crohn’s suffers generally are thin. I don’t know if you’ve found that.
People differed in how much they felt they needed to understand about their condition to make informed choices. A few liked to take an active role and read up on things before attending appointments with health professionals. A couple of older people said they tried to educate themselves about the medical science around their health problem as best as they could. But they struggled to understand the more complex aspects and were happy to trust their doctors to make the right treatment decisions for them. Having a good relationship with a trusted health professional was more important to them than knowing all the medical ins and outs.
Sylvia is a retired social worker. She is a widow and has had two children. Ethnic background/nationality: White British
I didn’t know anything about Crohn’s Disease and, and I asked people, but, you know, again there wasn’t really any information for the…so anyhow at that time, I just went along with it. I had two young, you know, was married. I had two young children. And I asked how, how, you know, how do you treat it? “Oh well let’s, you know, treat it with a low fibre diet and then you will be okay.”.
Have you found much information out yourself over the years?
Yes. An awful lot on the internet which is good, but I found sometimes you can absolutely frighten yourself. This is so much information. And that’s been useful I must admit.
Age at interview:
David is a retired company director. He is married with two grown up children. Ethnic background/nationality: White British
And do you feel that you were given enough information at that point?
Yes, yes. I think I was handled very well. I’m very impressed by the doctors who’ve treated me at all levels really. Yes, I have no complaints in that area at all.
And have you read much about myeloma?
Yes. I’ve read, I’ve probably done what lots of people do, which is look at things on websites. But they’re all a bit confusing and I mean a lot of it is written in very technical language which I don’t claim to understand. I prefer to listen to what the doctors tell me.
Several people talked about the importance of getting the right amount of information at the right time. This was particularly the case when the diagnosis had come as a shock. People sometimes felt swamped with too many or the wrong kind of details. Busy NHS settings and rushed appointments could also make it harder to take in information, digest it properly and have the chance to ask questions.
Harriet is a management consultant and is married. Ethnic background/nationality' Jewish/Russian/Polish
At different times different sorts of information are very useful. In ‘73, 4, 5, 6, they just didn’t have what they have today, and there was very little. But when I was diagnosed in ‘99 I certainly got in touch with Ovacome, a support group for people with ovarian cancer. I’m a member of Ovacome and I’m a member of the Lymphoedema Support Network. I have gone to meetings which I haven’t found very useful from Ovacome, but that doesn’t mean that others wouldn’t have. I felt like I was too much of a veteran in a way. I had been around this too long. The Lymphoedema Network are mostly about literature and lobbying. I did that Arm and a Leg Clinic which was like a three week support group. Ovacome were incredibly helpful with information. They have a video about ovarian cancer and what the different stages mean and so on. It was really useful to have the kind of resource in my living room that I could watch slowly and take it in. I found all the various Bacup support materials are very good [now merged with Macmillan Cancer Support], and it just depends what you need at a given time. There are some leaflets on fatigue that are quite useful, but you don’t need to have them until you have the fatigue.
I’m using a cold cap now which is why I still have my own hair. It is absolutely torture, I mean it is unbelievably painful to do that. It’s freezing your head. For the first ten minutes, it’s like ‘agggghhh’. I cry from the pain of it, and then I can manage. I change the hat three times through my treatment, so when I have it on for the first half hour, the first ten minutes are excruciating. And then I get the next one and the first seven minutes are excruciating. And that stays on for 45 minutes, and by the time I get the third one, you can’t really tell what’s going on. It’s not so bad, because my head’s pretty frozen by then.
I’ve been learning about chemo and hair loss and the leaflet on hair loss and how to manage that is good. I’m doing something right because my hair is still here. But not everybody is as lucky as I am, and apparently there are two different kinds of caps. There’s the blue one which is the old fashioned technology that comes out of a freezer and there’s this new pink electronic one. I knew one of the nurses very well at the [hospital] because she used to work in the surgery clinic and now she’s on the chemotherapy day unit and she looks after me - she’s one of my little guardian angels and she said, “Don’t use the pink. It’s the new technology, but don’t use it. It doesn’t work as well. Use the blue.”
I think you have to have life beyond cancer, and some people are so immersed in it that it’s not that helpful, but I think when I’m ready for information I go looking for it on the web, in libraries, and somehow the right thing tends to fall in my lap.
Molecules of Emotion is a book by Caroline Pert. She was a scientist who began talking about the impact of emotion on the physiology of the body and how that can really help and or hinder your cancer, and just started opening up ideas like the more you can get your endorphins working, the more you can have strong immune system. Whether that’s going to cure your cancer or not is another issue, but it certainly will help you deal with the treatments that come at you. It was interesting in that it was a scientific woman writing about a scientific process and also talked about some of the politics in health research and health development which made me question a lot of stuff that was out there. For me it was a book that opened? my mind to many aspects of things. I felt it was good.
Age at interview:
Michelle is a tutor and housewife. She is married and has 3 children. Ethnic background/nationality: Jewish
The surgeon at the time did not mention to me that he thought that I might have the BRCA gene, but he did think that I might have due to my age, and being an Ashkenazi Jewish girl. He, alarm bells rang with him that he felt that it would be necessary to test me for the BRCA gene mutation. But he didn’t mention it at the time. Now I’m … the reason being when you’re just diagnosed with something like that, there’s so much information thrown at you at once. You know, I was otherwise a very healthy, fit and well person. It was too much information. So he decided to keep that information for a while. And I didn’t get…. This information wasn’t put to me until after my chemotherapy.
But in most people’s cases I think it’s a good thing to know at the beginning because now I’m faced with the choice that I have to have my other breast off which I’m going to do. So I have more surgery to face now. And I also have the choice to have my ovaries out which I’ve now done. The ovaries are separate because you can do that keyhole. It isn’t so intrusive. But the actual going into surgery again now - I don’t really want to. I’m kind of getting my life back on track. Don’t really want to do that. But I have to. If I would have known then I could have had it done, dusted on that first day, back in 13th March 2009, double reconstruction at the same time, if I would have been more aware.
Have you read much BRCA or have you just relied on the information you’ve been given?
I’ve read a fair amount, a fair amount, but it’s quite complicated to be honest. I know there’s three identified genes that they’ve now found that are linked to BRCA, to breast and ovarian cancer, and other cancers with it. And BRCA 1 or 2 is either one of them. And you’ve got a 50% chance of carrying if you’re carrier, of passing it on, of course, to your children.
Age at interview:
Simone is a statistician, married and has two children. Ethnic background/nationality: White
Did you think you were given enough information when you got the diagnosis?
Yes, I mean I think that was one of the benefits of going private. The, breast cancer nurse there was absolutely fantastic and you know, she spent time with us after we had been told it might be cancer and explained the whole process to us, so any questions … And in fact we went back in the next day, so she could explain things in more detail, and we got used to the decision, but all the way through, her, and the other two chemotherapy nurses were fantastic. And having spoken to other people who’ve been treated on the NHS, I mean the treatment just doesn’t compare really, and I don’t think that’s any fault of the nurses in the NHS, there are just too many people to see, and not enough time, you know, these people have got the time to spend with you, and they’ve always been at the end of the phone. Even now, you know, nearly three years later, if I’m worried about anything, I know I can phone them up, and they will answer the question themselves if they can or they’ll speak to the oncologist and get back to me.
And do you find the friends that you’ve got who are going through similar experiences that’s enough for you?
Well I mean. I think every case is different really. We’re all unique. It depends on, you know, the size of the lump, where it was, whether it’s spread, you know, the type of cancer. I had the ductal type, another friend had the lobular type, you know, and another friend needed herceptin because she was Her2 positive, so we all had very different experiences. We all had chemo, but their actual diagnoses were different to mine. They are all different.
Age at interview:
Caroline is married and has 3 children. Ethnic background/nationality' White British (Jewish)
When you found out and you started doing all the reading about this, and you said you got quite obsessed with it..Was it the figures that worried you or what was it that particularly worried you?
Definitely the figures. If someone says to you, you know, you’ve got a 15% chance of not getting something, you know, you think well I could get this and because then looking back into my family history, having found out who’d had it, and it was like six women, grandparents, and aunts. I thought this is, you know, this is frightening. 85%. It’s frightening. And also just reading up, its not only breast cancer, ovarian cancer, there’s other cancers. You just read through this list and it terrifies you. And then you just read more and more and it becomes like a morbid curiosity, and what have peopled suffered with and what have they done? What’s gone wrong? And you know, you read up on absolutely everything, and your head starts swimming, and you do get horribly obsessed with it, and then I wanted to meet other people that had it because as I say, you can make all the right noises if you haven’t got it, but I think unless you’ve been through it, you don’t really understand what’s worrying somebody. So that’s what I found BRCA Umbrella and I met other people who have the mutation. And it was just so nice to talk to people who felt exactly the same way and had, I suppose, irrational fears some of them, but absolutely understood what I was thinking. They have the same issues regarding your children and what if you passed it on to your children, and all of these things.
Most people used the internet at some stage to find out more about their condition and to make contact with other patients. However, many of them acknowledged that browsing the web had its perils and it was easy to feel overwhelmed by scary details. A few people had been cautioned against trying to look things up on their own initiative by doctors or family members.
Sara is married and has several children aged between 11-26 years. Ethnic background/nationality: Jewish White
I think, trying to go back into all those feelings, because it was a very traumatic time, but I think when you have a chronically sick child, you’ve got to focus on the child. And you can’t as a pharmacist you would have thought that I would go into it all and investigate but I found that I just couldn’t.
Even once it was diagnosed, I thought right I really do have to look into this. That’s the way I would work normally. The information on the internet was so depressing. That wasn’t the way the doctors talked to me and I don’t think they were just trying to make me feel comfortable. They seemed very upbeat, that there? was lots of research going on, and we can deal with this, we can manage it. But on the internet the information is very depressing and I just cried. I couldn’t take it. I couldn’t handle the stress of dealing with my child who was suffering so much, and on this regime, where you really had to support him. It was a nightmare time. So I just stopped the research. I couldn’t take it, and it is really only the last few months that I look into the subject. I’ve found that you just can’t cope with it, well I couldn’t cope with it.
Age at interview:
Aaron and Rebecca are married with one child aged 5. Ethnic background/nationality: Jewish.
So [hospital name] advised you not to read too much on the internet. What did you find your information?
Aaron' Most from asking things or leaflets, there were all the leaflets they gave us all over the ward like that they gave us and also probably the CF Trust I suspect.
Aaron' I mean from a reliable source if you like...
Rebecca' We did post on the, one the CF Trust Forum. We do still post on the CF Trust Forum for parents and carers, but when we first had her, we were advised that yes, get the support, its useful to have that back up. But remember is can be a bit of a distorted view. Quite a few people, including us, only post questions when they’ve got a problem, so you don’t really hear so much, actually my child is doing really well and she’s fine, kind of thing.
Aaron' You don’t hear the good news in places like that.
Rebecca' You don’t hear the good news. You hear the bad news. And you know, as she’s got older you notice that people who post on the forum are either those with unfortunately very ill children, or those with new diagnosis. And they post for the first year and then they disappear. [laughs] And I mean that went for us just as much as it goes for everybody else. So you do tend to only go and seek information when G-d forbid they are not well.
Nevertheless, the internet was seen as a valuable resource by many people. Besides providing up to date information, it enabled them to make contact with others - sometimes in different countries - who had the same rare conditions and share their experiences for mutual support. A couple of people had been able to seek Rabbinic support round the clock via a website.
Those people without internet access managed to find information through their local library and were able to find books providing a Jewish perspective on health issues. Some of those who were active in their religious community managed to find information and make contact with others who had their condition through community links.
Miriam is a kindergarten teacher and married with five children. Ethnic background/nationality: Orthodox Jewish
You are advised you not to read too much. You’ve not had any problem getting information about anything to do with Tay Sachs?
No. No. I mean we are not on the internet now.
No we’re not on the internet, but then we know who people who are so at worst we can visit their families, or we can use the library, we use the library if we need to, but no I think that information passes down very well and we, our GP is, has got lots of, he’s got some of the doctors are Jewish and they’re very informed on, on Jewish issues. So that, so that we’ve always been able to get, you know, if it’s a health issue then it comes through. They are very well informed on that.
Also there’s quite a lot of books on Jewish medical ethics, which are, it’s a whole sort of world of its own, and that, so that’s very, you know, there are even baby books for Jewish mothers, and they all talk about the health issues within the frame of… so you can gen up on it if you want to. It’s very available that information. It’s not, it’s not secretive. And there are, you know, we have you can always ring up there’s, any time of the day or night there’s a number you can ring and ask a question to a Rabbi, so you know the modernity has come into this whole area, so that, probably you can do it on the internet as well. I don’t know. But and there’s the surfing Rabbi and the, you know, whatever, so there is a lot of information out, out there. So I think people can inform themselves on health issues from a Jewish point of view. And of course there’s masses and masses of information from the non-Jewish point of view, you know, and general information.
A few people had become members of organisations that provided specialist support and advocacy for their condition and thereby gained access to further information. Many organisations provide a range of leaflets and booklets free of charge. Beyond that, membership benefits sometimes include regular newsletters or magazines, invitations to meetings, expert talks and conferences.
Jill is married and has got four grown up children. Jill volunteers for local and national organisations. Ethnic background/nationality: White
I met somebody who had glaucoma by chance, talking, and she belonged to it, and said how, you know, she found it useful and helpful, so I, I joined it, and I pay £20 a year I think. Get four, four big magazine a year, and its got a, they give a public lecture four times a year at different centres. One of them is in London, I’ve been two or three times, but it’s a bit way above my head. It’s too complicated really. And people ask questions. That’s the bit I like. But they reproduce a lot of this in the magazine. So it’s interesting you can read, I find that the most interesting part of it.
Why do you find the questions the most interesting part?
Because they usually ask questions that are a bit more, the layman can understand. And then they give an answer that you can understand better. Its usually I find a bit too high falluting, you know, for the ordinary layman.
Age at interview:
Age at diagnosis:
Riva is married with two children.
In terms of information do you read a lot about Crohn’s or have you read a lot over the past twenty years?
I did. I did read a lot. I am a member of the NACC. It’s actually been a really helpful thing to be. First of all they give you this fantastic card. It’s called a ‘Can’t Wait’ card with a lot of shops and businesses recognise and they let you use the toilet ever if there isn’t customer toilet. And I know it seems like a small thing, but it’s a life saver. I would recommend that to anybody with Crohn’s disease. Join the NACC just for that card.
They also have a lot of information on their website and they have meetings with doctors and lectures and update you on new things, send you their newsletter every few months. It’s good stuff. It helps. So I did learnt quite a lot about it. And about other conditions that connect with it. Or don’t, you know, because when my back problems started I was looking to see has it been affected by the Crohn’s. Is it something new? But indeed it really helps with these things which I didn’t have when I was 15. So it’s easier now I think.
Some organisations run support groups where people can meet in person to talk to others with the same condition. Some also operate telephone helplines.
Caroline is married and has 3 children. Ethnic background/nationality' White British (Jewish)
I found out most of the information myself, and there isn’t that much there. You can go on the Macmillan’s website or Breast Cancer Care or whatever, and there’s a bit of information, but its, its generally aimed at people who’ve had breast cancer and so on. There isn’t that much, so …
Are there any websites you would recommend to people?
Definitely the BRCA Umbrella which is brilliant. The charity Breast Cancer Care have been running a telephone support group for people with a family history of cancer, which I’ve been participating in which is a six week group on the phone with six women, and we just chat about how we feel. What’s worrying us. So they’ve done that. I’ve had some good booklets from, they’ve got a good booklet on breast reconstruction. Macmillan have got one now on breast reconstruction and hereditary breast cancer. So I think other charities are realising that it is a growing problem and that they need to do more for it.