Jewish Health
Support & support groups
There are numerous support groups and organisations which provide help and assistance to people diagnosed with the conditions talked about on this site. Some of them have been set up specifically with Jewish people in mind. Others are national or international organisations without an emphasis on ethnicity. To see a list of website links for some of the organisations mentioned in this summary, visit the ‘resources’ section. A good place to find out about smaller local support groups that might not have their own website is through your doctor or nurse or your local library. Some organisations also operate telephone helplines that can provide information and a sympathetic listening ear.
David found the Myeloma UK helpline very helpful and felt he could talk to people about any...
David found the Myeloma UK helpline very helpful and felt he could talk to people about any...
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Well I’d certainly recommend the Myeloma UK Organisation which is brilliant which has done a tremendous amount in improving the lot of myeloma patients in this country. First of all, in negotiating with the National Institute for Clinical Excellent, is it, NICE? And as a result, largely of their negotiations, they have succeeded in persuading NICE to authorise two drugs; Velcade and Revlimid, neither of which was available a few years ago, but both of which are now said to be, well are major components in the fight against myeloma. And probably in years to come Velcade will be the treatment I’ll have next after the stem cell treatment whenever that comes around and then Revlimid is the next one which again was only authorised by NICE quite recently but it has found to be very effective in latter stages of myeloma.
And the Myeloma UK Organisation has done fantastic work in that. They’re also very, very supportive. They have a telephone number in Edinburgh you can phone up and talk to anybody about any aspect of it, and they’re very, very helpful. They also run support organisations around the country, and they also run conferences around the country. There’s one in London every year, and there are about a dozen around the country, at which they bring the latest technology and the latest experts to talk to people about developments in the world of myeloma.
Cissie finds it helpful talking to other people with Familial Dysautonomia.
Cissie finds it helpful talking to other people with Familial Dysautonomia.
Sex: Female
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And I’m involved with the, with the society that’s here. The Familial … DSGB and I do have contact with a few people, a few of the sufferers as well. Either on the phone or we meet up occasionally.
And do you like that?
Yes. It’s okay. To begin with I wasn’t that keen on it, but now I am happy.
Why weren’t you so keen on it?
I don’t know. I just, I didn’t think that we… beside FD I didn’t think that we had much in common but we do help each other and talk to each other about what similarities we have and…. Things like that.
Is there much similarity?
Like our walking, scoliosis, pegs. They are similar but people, some of them are more independent than us, than me. They go travelling with a carer on planes, which I wouldn’t do. I’m not a very good flyer. And they’ve written books and things like that, which I haven’t done. Well I’m not planning to write anything. But there are different levels. FD varies from person to person. Sometimes people have more chest problems or spine problems than other people.
People differed greatly in their views and experiences of support groups. Several people were vaguely aware of a support group for their condition but had never made contact. One man with Crohn’s disease was very clear that he did not want to meet other people with the same condition as he thought it would make him feel more depressed.
JP doesn't find the idea of support groups helpful in any way. There is nothing worse than...
JP doesn't find the idea of support groups helpful in any way. There is nothing worse than...
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Have you sort of got involved with any support groups?
No.
Can …?
I would really hate to do that. I mean, you know, I went, I had a friend who was ill with it and I used go and visit him, and it used to scare the crap out of me, because you go into hospital you see people who’ve got… I mean I’ve led a normal life with it. But if you go into hospital then you see people with the same disease with you that are living hospital lives. It’s absolutely terrifying.
This guy, who is a very good friend of my younger brother, he pretty much got hooked on the codeine and abused it. And he’s a weak person. And, I think he got, he got terrible depression. I mean catastrophically for him, he managed to use his Crohn’s to get himself on disability benefit which has ended his life. Because he had a £100 a week which isn’t enough to live, but it’s enough just to keep the wolf from the door, you know, he used the codeine the wrong way. He used other pharmaceuticals that he ended up getting prescribed as a result of it. And I don’t want to sound sanctimonious, I suppose it does sound a bit sanctimonious but I believe he had something largely similar to what I had.
Maybe, he probably had it a bit worse, but he just messed his life up. He just had no, maybe he had it a lot worse than me, maybe that’s a harsh thing to say. But his life was... I mean I gather now, he’s now talking to his family, but his life was basically ruined – by having this. But I also think the worst thing that could ever happen to him was disability benefit which is just a way in which you don’t deal with life, you know, you’ve got just enough money to feed yourself. So you don’t go and get a job, and he’s spent his whole life feeling sorry for himself. And taking the pharmaceuticals … taking I can’t remember what it was, I think he got into other things as well as the codeine. I can’t remember what it was now, but it destroyed him, the Crohn’s, just destroyed him.
But I never needed a support group and I’ve got my sister there anyway. And I’ve got three sisters. One has serious Crohn’s like I’ve got, and the other two have really got Colitis or Crohn’s too. So it’s permeated the entire family in my generation.
And the only support you’ve said, you’ve had your sister?
Yes.
You haven’t felt like seeking support outside of …?
No. No I mean I’ve got Crohn’s, I’ve got Crohn’s Association stuff, but I always, I never really had active Crohn’s and so, not after that operation. I didn’t think there was much in it for me, and it was, as I said, I don’t, I didn’t even, when I had those check ups I didn’t like going to hospital. I don’t like being around other sick people. I don’t like seeing other Crohn’s people looking shit. You know, there’s no use you having depression, you just soldier on.
Did you read much about it?
No.
Have you ever looked on the internet?
There are only a few people with Familial Dysautonomia in the UK. Sam is in a documentary that...
There are only a few people with Familial Dysautonomia in the UK. Sam is in a documentary that...
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I have meet a few people that have had it yes. Actually two people I’ve met. One of them had it severely worse than I did, and another one was working at the World Trade Centre on September 11th and so yes, I’ve met some interesting people who have got the illness. FD, FD is the other name for it. So, not many people, unless you’re Jewish, not many people know about it, know about this illness so…
And have you joined a support group or anything like that?
No I haven’t. I’ve always been asked if I wanted to but I haven’t no. I don’t, I don’t know, I’ve gone to disability days that have happened in New York. There hasn’t been any in this country, maybe there has been. Because there’s only about four or five of us with it that live in [city], the rest either live in New York or Israel. So it’s a pretty un-well-known illness. I mean one good thing about this film that I’m doing and doing this review it’s going to tell people more about FD. So and hopefully that’s what we want, and this thing I’m doing in America to help the genes and the growth and things like that about, I mean how different science is now to what it was like 30 years ago, even before I was born. So yes.
However, for many people we talked to, being able to meet like-minded people with a common connection and exchanging practical tips on coping with their condition was a helpful and positive experience. Some people made good friends through local support groups and maintained these friendships after they had stopped attending the group.
Timing was an important issue. A couple of people had joined a group or subscribed to a newsletter soon after diagnosis but then found it difficult to cope with the sheer amount of information they received. One man with torsion dystonia described how he had not felt ready to meet others with the condition when he was most badly affected, but more recently had joined the Dystonia Society.
Meeting others with the same condition used to be M's worst nightmare. Now he feels more ready to...
Meeting others with the same condition used to be M's worst nightmare. Now he feels more ready to...
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And what about support? Have you joined any support groups? Or ..
Support or Sport?
Support.
Before the operation I was, while in Israel, Dr [name] was the head of the Movement Disorder Unit in Tel Aviv. He said, “Well we’re establishing a, a support group. Why don’t you join?” There was nothing… I couldn’t think of anything worse, than going into to a room full of people with my condition. It was my absolute nightmare. I was in denial, I wouldn’t say in denial. It was just I didn’t want to walk, I hate, I didn’t want to look in the mirror and an analogy if I looked at people with the same condition, physically. There was a little pavement in the Kibbutz, which at the end of it was it all sort of reflecting mirror, I wouldn’t walk on that, on that bit of pavement. I just couldn’t stand to see myself walking, let alone seeing someone… or seeing someone else with the same condition.
Several people said they attended a handful of meetings and then moved on. One woman who had tried out different support groups for women with breast cancer didn’t feel she fitted in with the women she met in the first group despite their shared experiences. A woman with Crohn’s, who attended a few meetings, found out that other people experienced worse symptoms than her and did not think anyone would want to hear how relatively well she was managing. A few people said they found attending a relevant expert talk or information event more useful than just sitting around and chatting to other patients.
NACC helped Gareth to feel less alone when he was first diagnosed and he has raised money for...
NACC helped Gareth to feel less alone when he was first diagnosed and he has raised money for...
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I did get involved with the NACC when I first was ill because I wanted to understand and I didn’t want to feel alone. Over the years I’ve disconnected from those kind of groups. I will do any help that I can for them, if it’s a charity. On Saturday I’m going to Manchester to headline a gig that’s to raise money for the NACC. In the beginning of August I’m over in Guernsey for another gig that’s to raise to money for the NACC. A couple of weeks ago I did a gig that was at the Comedy Store to raise money for a hospital that specialises in Crohn’s.
I’ll do that, but I feel now like I don’t want to be around a room full of people who have got Crohn’s and it’s not about wanting to feel like I’m the only one and it’s my thing. It’s more that I, like in the past when I’ve gone to the AGMs for the NACC and things like that, brings back some bad memories really and I’ve moved beyond, well yes, I like to think I’ve moved beyond them and I obviously have. But those kind of, being around too many of those people sometimes brings it back and there’s an element amongst patients of any illness, I think, of competition, of having more operations, or I’ve had, or my Crohn’s is worse, or I’ve had, and I’ve met people like that, and fair enough if that’s you choose to conduct yourself, but I’ve made a point of I can’t tell you how many operations I’ve had on my belly. I know it’s a lot, but I haven’t racked it up. I haven’t got a tally chart, and it’s the same with any part of my body, I just try to not make it on some levels the be all and end all of who I am.
Having said that, at the same time, it is part of who I am within my work, has been part of who I am, within my work and some of the work I’ve got. But I find yes, I find those groups quite difficult now. And also as of any groups they’re full of, they’re often full of people that want some level of power in some organisation. So you’re get your bad eggs in everything and I just choose now to just do my bit and help out, but not really be hands on, if I can help it, you know.
Simone thinks support groups have their benefits but sometimes you need an expert opinion and a...
Simone thinks support groups have their benefits but sometimes you need an expert opinion and a...
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Have you got involved with any support groups?
Yes. I did start with, there are two local groups. One, I only went to once. They used to meet in each other’s houses. They were a lot older than me, and, quite churchy type people and I didn’t feel I fitted in. They were very nice but, I think for most of them their experience was many years in the past. So I didn’t find that terribly helpful.
There’s also a local group that met every month in a local community centre. I went to that about four or five times. And they were a much more mixed group and I did get chatting to a few of the women there and that was quite helpful. And also the [clinic], private clinic where I went for treatment about every four months or so, they organised an evening and invited all the women they had treated in the past, and I find them the most useful I would say. That’s only three times a year.
Why is that useful?
Because they usually organise something relevant. They’ll have somebody coming to talk about menopause, the symptoms, or they had a surgeon there to talk all different methods of reconstruction. Or they had people like Nicola Jane coming with swimming costumes and things like that. And plus it’s just an opportunity to see the nurses again, who you feel quite close to, and unlike the NHS there are only three people you knew you’d see through the whole of the treatment. So we did build up a nice relationship. It was quite reassuring to see them again, and just to see other women who had been through similar things. It just felt more cosy there.
Do you think other people may be getting that from forums? That they can ask questions on forums if they are a bit worried about something like that?
Well I think the trouble with forums is, you’re not getting an expert’s response, you’re just getting other people’s views, and I think people have very different experiences and somebody may have found something they think is another lump and they might perhaps that’s it, they’re worried. Somebody else could just respond, “Oh yes, that happened to me. And yes, it was cancer.” Well I don’t think that’s going to help this person, because theirs might not be. This friend who had the lobular cancer, she had a mastectomy on one side, and she felt something in the other breast. And then there is definitely a mass there and she had to go and have that investigated, and thank goodness it turned out not to be cancer, but the last thing you want to be told is oh yes, that happened to me, and yes, it was. So, I think, they do have their benefits but you’ve got to be careful. I think sometimes you can come off the internet feeling worse then when you went on.
On occasions, organisations might be able to provide financial help or give advice on financial matters for people whose ability to work has been affected by their condition or who need to purchase expensive items to help them live more comfortably.
Goldie was able to get a £750 grant from the Department of Health via two other support...
Goldie was able to get a £750 grant from the Department of Health via two other support...
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And now, you say you’ve got it you’re managing it very well with the sleeves and …?
Oh and I’m very lucky basically. If I had to have it at all I’ve been extremely lucky. I belong to an organisation called RAGE.
Right.
Yes, and I’ve been given just recently by the Department of Health partly through RAGE and partly through MacMillan £750, you know, people who are suffering the effects of breast cancer.
oh.
Have you heard of this?
No.
Well you might tell other people about it.
Can you tell me a bit more about it then?
Well it’s people who’ve got lymphoedema basically and are sort of suffering and there are various things you can’t do because of this. And RAGE nagged the Department of Health and I think the MacMillan people did as well. And the Department of Health will give you £750 to help you, you know, with anything you’d like extra. And they’d like to know at the end of the year what you’ve spent it on. And, they say, you know, you don’t have to produce receipts or anything they just could like to know. And I mean, for instance, I’m spending it on more help in the house or, and garden, that sort of thing and having my toe nails cut [laughs].
Oh that’s nice. Yes.
You know.
And is it a one off payment?
It’s a one off payment, yes.
Besides formal support groups, people mentioned friends and their immediate local community as important sources of support. For those who had a child with a serious health condition it was important to find supportive staff at school or in the nursery to help manage their child’s health and be aware of their special medical and dietary needs. Parents who have been diagnosed with an illness and had small children to look after found practical help from friends and family invaluable. Several people had also sought Rabbinic support, both for practical guidance and also for counselling to help them come to terms with their own or their child’s condition on a spiritual level (see Jewish identity, rituals and observances).
Sylvia has found her sense of belonging to her synagogue a comfort to her.
Sylvia has found her sense of belonging to her synagogue a comfort to her.
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No apart from I like the way of life. Although many of my friends these days aren’t Jewish but it’s, you know, that’s how it is. I mean when I was a child you never had non Jewish people in the house or anything like that. But no, I like the way of life. I like the sense of belonging, even though I’m not a particularly active participant it gives you, for me it gives me a feeling of security. And, you know, I’ve got Jewish friends, non Jewish friends and most of the time we all mix in together and so, yes, I’ve got the best of both really, and, having the whole Jewish thing there, which as I say gives me a feeling of security.
When you say you like the way of life. Can you explain what you mean by that?
When she went through chemotherapy, Simone's friend provided practical help with the daily school...
When she went through chemotherapy, Simone's friend provided practical help with the daily school...
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When you say your friends, you had certain friends that were really good. What was it that they did that you really felt…?
Well one friend just took control of the practical side of it, because I wasn’t able to do school runs, and my husband wasn’t working local enough that he could stay at home to do it. And, you know, this friend and two other friends between them, made sure that somebody was always around to take my children to school and to pick them up in the afternoon. So that was, you know, a big worry off my mind.
And they were there to talk to as well, but, I just, they can’t really understand, you know, if you haven’t been through it, you can’t really understand, you just know you don’t want it to happen to you, and you don’t want to see it happen to somebody else, but you don’t really know what the experience is like.
For many people, the most natural place to seek out help and support were partners and family members (see Relationships). Many people we spoke to had family members who were affected by the same condition, and several said they found it useful to ‘compare notes’ about diagnostic and treatment information with siblings or cousins. It was harder to talk to parents because of a concern about causing parents to feel guilty or worried.
Those who had family members living in other countries often found that their relatives’ healthcare experiences were quite different to their own. A few people also said they had first heard of scientific breakthroughs, tests or treatments through friends or relatives in Israel or the United States rather than their own health professionals in the UK. This was thought to be due to the larger populations of Ashkenazi Jews in these two countries, meaning that the condition was likely to have a higher profile.
Several people who had received a lot of support when they were unwell were keen to ‘give something back’ once they felt better and let others benefit from what they had learned about their condition.
Before the latest recurrence of her cancer Harriet had hoped to draw on her background in...
Before the latest recurrence of her cancer Harriet had hoped to draw on her background in...
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I have gotten involved with the Maggie Centre. What I had decided to do, funnily enough, before this last recurrence, when I was moving out to [town], I thought I could do something very positive with my cancer experience and my skills as a psychologist. I had spent some time with the Bristol Cancer Help Centre where in 2000 my husband and I went for a weekend, and I learned a lot. I thought, ‘Oh I’ll go to some of the courses they run for practitioners and see what the latest thinking is before I set myself up’.
So I enrolled on a number of courses there on nutrition, on endorphins, on all kinds of mind/ body relationship stuff, on guided imagery and so on. While I was there somebody was on the course with me from a Maggie Centre. I’d never heard of the Maggie Centres. I knew about Bacup, I knew about Macmillan, I knew about lots of things but I had never heard of Maggie. It sounded like a really good scheme. It’s a kitchen table approach to cancer care. You come into a homely environment, they make you a cup of tea, there are biscuits on a kitchen table. Nobody wears uniforms but they’re all professionals and so on. And I thought I really like the sound of that. When I called to find out what was available to me locally in terms of support, I talked to the Palliative Care unit at the [hospital] and they said, “Well do you know about the Maggie Centre? We have one here at the [hospital]” Oh great!
I did go along and I have a monthly session with their therapist. I went a little more often to do mindfulness meditation training initially but I wasn’t feeling like I needed to go on with this with my background in psychology. I needed a place once a month or so to just offload everything without having to worry about anybody’s feelings, particularly when I was looking into the abyss. I guess I’ll look into that again, but it might not feel as scary this next time, because I already know how scary it is. But maybe it will, who knows.
I go for one-to-one counselling. They sometimes have an art therapy group. I went to a six week block of sessions, which I found very useful. It was a little group of people who supported each other, but it’s not a regular, on going support group. I enjoyed it and I found it useful.
A few people accessed one-to-one psychological support from a counsellor or psychologist with specialist knowledge about their condition. A couple of women had been able to see a counsellor through a charity, but others had to use their own initiative and pay for services privately.
Karen received fantastic support from Chai Cancer Care when she was unwell and would like to give...
Karen received fantastic support from Chai Cancer Care when she was unwell and would like to give...
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Oh fantastic yes. I had a counsellor called [name], a mad Israeli woman who was brilliant. She made me laugh. She actually said I didn’t really need counselling, but she liked chatting to me anyway. So we went. So I went and we talked about shopping and stuff. [laughs] And my girls. She … I dragged my two along to the first meeting. They were fuming with me. They were not interested at all. They said they’d got their friends to talk to. So I had to leave it at that.
But I kept going back they’ve actually phoned and left a message, which I haven’t got back to her yet, just to see how I … you know, to follow through and see how I am months down the line. And I went and I had some massages. Obviously very gentle. You’re not allowed anything deep tissue. But found it really therapeutic and it was all free. You know, you give donations to what you can afford at the time, but basically if you can’t afford anything then you don’t pay anything. Fantastic place. I really think it’s a fantastic place. No I’d definitely recommend it, and I definitely will in a year or so, when I’ve gone through the two years, go back and say, “Right I’m now, please God, still in remission, you know, and would like to volunteer,” especially if I’m not working full time. I feel I’ve got to do something. So yes…
Michelle's counsellor helped her through chemotherapy, whereas talking to other women with breast...
Michelle's counsellor helped her through chemotherapy, whereas talking to other women with breast...
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When you’ve talked about choices, how difficult is it when you’re faced with choices, did you discuss the choices with other people a lot. Have you tried to resolves these choices yourself?
No I’m a very talky person. I like people and I’m not very good at making decisions and on these subjects I talked to genetic people, certainly medical profession people. [2 sec pause] And I have also spoken to other women in the same boat although that’s not been helpful and I’ve spoken to my close, my husband and my best, my girlfriends. And I have a counsellor. All of which has helped me consider the decision where I’ve, where I am at.
And you said it wasn’t helpful talking to other women in a similar position to yourself?
No, because no two people are the same. And, you know, one girl springs to mind, very, quite negative with her experience. Oh no I can’t face it. I don’t want to live with the fear. I don’t want to live with the fear. Well that’s not me. I don’t want to live with the fear. But I wasn’t living with fear. I was okay. I was working out that I’ve only got five years with my ovaries and working out that … [2 sec pause] I was trying to get a good deal for myself. Negotiate a good deal for myself with BRCA. And other women with their… have been like, “Oh God, you must check yourselves. If I get osteoporosis with Tamoxifen I’ve got…” Talking to other women is not necessarily a good thing. That put the fear in me. More than I had. So …
And you haven’t got involved with support groups then if you’ve not been talking to other women, or have you tried to be involved with support groups?
Last reviewed September 2015.
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