Parkinson's UK and Parkinson's disease nurses
When anyone learns that they have Parkinson’s and they begin to look for information about it, their first port of call is likely to be Parkinson’s UK. Almost all the people we interviewed had used Parkinson’s UK at some time. Many had joined, though some had chosen not to attend any of the meetings. Members get the quarterly journal with up-to-date information, and can participate in activities of the society's local branches, support groups and special interest groups. Information is freely available on the Parkinson’s UK website, and a DVD is available for newly diagnosed people, it can also be viewed online.
Many people found the Parkinson's UK helpline useful. Fiona used it during the early years of her husband’s illness. At this time she felt that she should not rely on her friends for unlimited support, their GP had little specialist knowledge of Parkinson’s and there was a 6-month gap between hospital appointments.
Fiona found the helpline discretely sensitive to her needs and its trained nurses helpful and...
There is a helpline with the Parkinson’s Disease Society and that I’ve rung a few times and my husband’s rung a few times and although sometimes you have to leave a message and they will ring you back, someone always does ring you back. And, and I’ve, particularly sort of in, in the first few years I found that really helpful, just to be able to talk to somebody impartial and I’ve spoken to the same lady a couple of times and it’s been really good just to be able to, you know, offload some of my worries and my concerns. I’ve got very good friends but I don’t feel like I want to burden them all the time and I know they’d say, “Oh you could talk to us any time.” But, you know, there are things that you, that do build up and you do worry about and someone familiar with the subject to be able to talk to I found that really helpful.
That was a little bit tricky in the early days because it was before I’d told my children so, but they would never say who it was calling they’d just say, “Is your mum in?” And so that was never a problem anyway. And I did suggest to my husband when he was struggling, when he first, was on the medication and it wasn’t suiting him, I got him the number and he rang and he said that was really helpful again. Because the thing is when you go and see the consultant it’s sort of, perhaps initially it was once every six months and now it’s once every three months and we try and make a note of things to ask about when we go but it’s, it’s in-between time really, just having that, having somebody you can talk to, and although our GP’s very good, he, he says himself he’s, you know, he’s not the specialist in that, that condition. So just having that helpline is, is, is really good.
Joe had found the PDS very helpful, if a bit unrealistically upbeat, when things were very...
The Parkinson’s Disease Society has in the past been for me an enormous help, although I said that being ill made one feel lonely it hasn’t led me to join a branch with the PDS or want to meet other people that have the illness. I’m not a joiner, I’m not a club person so I’ve remained with myself in dealing with the illness. The PDS has helped with its literature, telling everyone about advances in treatment, problems of treatment, sorts of treatment available, difficulties as the illness progresses, different people’s experience you get told through the magazine. It’s all a bit upbeat and one can sometimes feel irritated by that because it’s not an easy illness to have but I think they do a good job for the most part. I have made, I have contributed in the past to a couple of the videos. It’s a while since I was in touch with them, and I’ve needed them less since the operation. If I hadn’t had the operation I don’t know whether I’d still be around, but I think if I were I’d need their help quite a lot.
Peter got the PDS to help him put together an information pack for people joining his local branch.
When Karen first joined PDS she thought she was the only person around with early onset PD. PDS...
I wasn’t old enough to have Parkinson’s Disease I thought. I wasn’t forty yet and I was really worried about what would happen in the future. I didn’t know where to turn. Luckily a Parkinson’s Disease nurse specialist put me in touch with the local branch of the Parkinson’s Disease Society and it was through them that I met lots of people who’ve been able to help and support me. I’ve now become very involved with the Parkinson’s Disease Society and I am the young onset representative for the [local] branch.
In the beginning I found it very difficult to find out much about young onset Parkinson’s Disease. There wasn’t really many people to turn to. I went along to the [local] branch but again it was nearly all old people, or so I thought. After going for a few months I found that in actual fact they weren’t all old and disabled, there were some younger people there. And that’s when the support group started to develop and really we help each other. We give each other advice, things that’ve happened to us in the past. To help to cope with the different things that happen. And really it’s a case of looking on the internet and finding out as much as you can. The PDS website is very good, and they also produced a DVD more recently, especially for young people and newly diagnosed people, which is a great help. I only wished that had been around when I’d been first diagnosed.
Angela admires the PDS and questions the value of a proliferation of separate organisations all...
I'm a member of PDS but I haven't been to any meetings, I don't yet feel the need. I don't see myself as a Parkinson's sufferer. I see myself as a person with Parkinson's, I happen to have it, like I happen to have been a teacher.
Having campaigned for a specialist nurse Peter describes his feelings now they have one.
Every six months, yes. And of course, yes, what we can do now is talk to the Park-, we have a Parkinson’s nurse to talk to. She doesn’t promise to be on the end of a phone, but she’ll take a message and she’ll get back to you, she always says within two days. Because I mean she, poor girl, she, she’s very good and we all like her. She, she’s the right person for the job, we’re all convinced of that. She’s a little bit above your average district nurse. She’s got a university degree and she was qualified to do this, that and the other. She was out of the district. She lives in [town]. And so all this is, I mean she’s really been pitched in at the deep end, but she seems to get on well with the two consultants at the neurology department in [town]. And we all, we all like her. We’ve all, we’ve all met her at least a couple of times. And I’ve met her when she’s been with the neurologist. So I know if I get any problems, I’ve got an answer at the end of the phone. And the neurologists themselves are very good, not like a lot of places. They will, you can get a message to them and they will come back to you which I think is nice. And it doesn’t happen in every, in every, in every hospital and there also are a shocking shortage of neurologists in this country.
Sharon distinguishes between what is best talked about to the neurologist and what the nurse is...
Natalia had not been convinced that it was appropriate to accept advice on medication from anyone...
What happens when you go to the neurologist, when you did go? What happened last?
It’s all rather quick really. He says, “How are you? Yes. Blah, blah, blah. Keep taking the medicine and, and whatnot.” And, but the last time I went to see the nurse, she said I could experiment with it a bit. And I could experiment perhaps having it instead of every four hours, taking some of it every two hours. But the thing is you have to experiment again over two weeks or something, and I’m very loath to do that because it might interrupt my time as it were and might put me out. So I haven’t done that yet. And I’d like to know really a bit more scientifically about this experimentation really. You know, should I halve, halve any of these pills I’m taking one of them, or should I just take one of them in the middle, or what will happen? I’m a bit, I’m a bit frightened really of changing the routine, because the routine is working fairly well now. But it could be better.
David emphasises the value of having easy access to a Parkinsons disease nurse.
No, you don’t. Most of the time you see a nurse actually a clinical specialist nurse in Parkinson’s and they’re very good. In some ways better than a consultant because they deal on a more personal level with individuals.
Yes, I think they I think there are bounds put on them about what they can and can’t do. Like the Stalevo that I take my Parkinson’s nurse could say, “Yes, okay. We’ll up you by, you know, a couple of milligrams a day or whatever.” But like when I was put on to Gabapentin she couldn’t start me on a new drug as it were, do you know what I mean, that has to be authorised by the consultant or major changes I think have to be done by the consultant. But I don’t have to see him. She we talk about I talk about with her and and she’ll just nip in his office and say this is, yeah, and they’ll agree or not. But I can see him if I want to. If I ask to. In fact doctors for me is the one the one I’m with now because I’ve only see her once so far. She’s new to me. It’s the first consultant I’ve ever been to that’s given me her e-mail address. “Any problems drop me an e-mail.” The consultant who will get in touch is quite remarkable I think.
Geraldine relies on a GP who has made it his business to become familiar with PD and the...
I found that my saviour, there are two people who saved me really and set me on the right road to coping with it, one was my GP and one was the Parkinson’s disease nurse that I met when I was first hospitalised.
Many people described their appreciation of the way they can contact a Parkinson’s disease nurse either locally or through Parkinson's UK. Geraldine did point out that this still did not cover all the 24 hours of the day and that sometimes a person living alone could be very alarmed in the middle of the night. She suggested that it might be possible to set up a service, similar to what is available on some helplines, which would use trained people in different parts of the world who could to give advice in an emergency at a time when nurses in this country were in their beds.
Last reviewed May 2017.
Last updated May 2017.