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…

Age at interview 46

Gender Female

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There isa 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 timeBut, 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 toI 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 inAnd 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 Gps 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.

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Joe had found the PDS very helpful, if a bit unrealistically upbeat, when things were very…

Age at interview 64

Gender Male

Age at diagnosis 43

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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.

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The services for people diagnosed with Parkinson’s varies widely across the country and the organisation supports people trying to set up groups in their local area.

Peter got the PDS to help him put together an information pack for people joining his local branch.

Age at interview 72

Gender Male

Age at diagnosis 67

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Join your local Parkinson’s Disease Society branch or support group, because they will have packages for newly designed, newly diagnosed sufferers.We’re putting ours together at the moment.Not every, not every society has this.We founda, a branch doing it in [city] and we’ve copied that. What we’re doing is we’re putting all the Parkinson’s leaflets together, we’re putting, we’re putting in a Parkinson’s DVD, and we’re putting these all inside a nice, brightly coloured plastic folder, a wallet rather, to give to newly diagnosed patients.We’re hoping that one of the next moves might be to sort of put those with theconsultant or, or through the, through the Parkinson’s disease nurse as well. But certainly if they join the local group,they’ll, they, they’ll be able to get all the help that they want. You don’t even have to send to the Parkinson’s Society. If you join a local group, they will have all the leaflets.And you can get a leaflet for everything.It covers everything, it’s,it, really is wonderful.

It’s a, a great help, it really is.There’sadvice on exercise, sleep,medicines,oh, it covers absolutely every aspect that you would, you would want to know, particularly as a newly diagnosed person.I would, that’s the first thing to do, is to join the local Society branch or support group. The branch is a little bit more self-supporting. We’re not, we don’t qualify as a branch yet but we, we are what they call a support group.So we’re run by the, we’re overseen by the Parkinson’s Disease head office.

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When Karen first joined PDS she thought she was the only person around with early onset PD. PDS…

Age at interview 45

Gender Female

Age at diagnosis 39

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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 whove 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.

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Angela admires the PDS and questions the value of a proliferation of separate organisations all…

Age at interview 59

Gender Female

Age at diagnosis 55

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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.

I think with all the research that’s going on the prospects are probably better than they’ve ever been.I get a bit concerned about all these major charities they may say they’ve all got different perspectives but at the end of the day surely what they’re all supposed to be doing is looking for the cause and hopefully finding a cure for Parkinson’s.And I’m a bit concerned that vast sums of money are going in different directions, certainly charity-wise, that really could be better managed focused together.I mean they found this with cancer didn’t they, they’ve coordinated, brought all the cancer charities together under one umbrella, I really can’t see the point of having more and more Parkinson’s charities.I think that we should be, they should be working together and pooling resources.I’m sure they do, I just don’t see why somebody has got to swan off and open up another one.And especially with the huge sums of money that are being involved and what is their impact on the person with Parkinson’s?Yeah I do have concerns about that.

I mean everything I’ve had from the PDS I can’t fault, I’ve had a very good service. I think it’s an excellent organisation.

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Specialist Parkinson’s nurses are usually attached to specialist departments of neurology where they work together with the neurological team. They may also be attached to departments of Geriatrics which often follow up older patients with PD. Some PD nurses are attached to GP practices where one or more GPs has a special interest in Parkinson’s disease. For many people they are a very important source of professional support. They gave advice on lifestyle, medication, local support groups and general day to day support. Many found their Parkinson’s nurse friendly and easy to access. In some areas funding for a specialist Parkinson’s nurse does not exist, which troubled many people. There was a Parkinson’s disease nurse at the hospital Fiona’s husband attended but he could not be referred to her because they lived in a different Health authority area. Others, aware of this problem had worked hard, often with help from the Parkinson’s UK to persuade their authority to employ a specialist nurse. In some areas one was shared between two health authorities, and this made it more difficult to access her.

Having campaigned for a specialist nurse Peter describes his feelings now they have one.

Age at interview 72

Gender Male

Age at diagnosis 67

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And you see, now you see the neurologist every six months?

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 ofa 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.

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Sharon distinguishes between what is best talked about to the neurologist and what the nurse is…

Age at interview 57

Gender Female

Age at diagnosis 49

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There is a Parkinson’s nurse at the hospital I go to and I’ve rung her two or three times.She is lovely.She is, it’s not that the consultant isn’t approachable, he is, he’s a lovely man, but there’s something in-built isn’t there about wasting consultants’ and doctors’ time.Your nurses are so much easier to chat to.And the consultant has authority.He can talk to DVLA about my driving and things like that whereas a nurse can’t.She’s, you can, I find I can be more honest andshe’s much more about lifestyle rather than symptoms.And she’s a jolly lady anyway, so that’s nice.Yes, I did, I forget, I did talk to her about getting in and out of the bath and things like that.But I was horrifiedat the suggestions she made.She was, she was being very practical and I wasn’t really.

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Parkinson’s nurses are nurse practitioners who can give advice on medication needs, make referrals to to health professionals such as speech and language therapists and physiotherapists. They can also give practical advice and counselling on the many problems experienced by people with Parkinson’s. And can advise and train other health and social care professionals. If you have Parkinson’s and you’re admitted to hospital, the nurse can contact the ward staff to make sure they understand your condition and the importance of you getting your Parkinson’s medication on time. Isabelle accepted that her mother was seen only once a year by a consultant and that for more regular monitoring of her condition and her medication it was appropriate for her to be seen by the nurse. When Helen realised that her compulsive gambling might be related to her Parkinson’s she tried to contact her consultant but instead got to see the Parkinson’s nurse. That she could ‘pour her heart out to her’ was an enormous relief, and through her she could get an urgent appointment with the consultant to change her medication.

Natalia had not been convinced that it was appropriate to accept advice on medication from anyone…

Age at interview 63

Gender Female

Age at diagnosis 55

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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 whatnotAnd, 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.

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David emphasises the value of having easy access to a Parkinsons disease nurse.

Age at interview 54

Gender Male

Age at diagnosis 48

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Do you always see the consultant or do you see just the registrar?

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.

So they have more I think of an understanding about living with the disease and how your life is because that’s the aspect of of the things that they deal with so they’re very, very good.Very, very good idea and I don’t know why the NHS won’t pay for more of it.But most I believe most of the funding for them is paid for by the Parkinson’s Disease Society which is quite sad really but, you know.

Are they in a position to prescribe? Can they change your prescription?

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 whateverBut 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-mailThe consultant who will get in touch is quite remarkable I think.

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Geraldine relies on a GP who has made it his business to become familiar with PD and the…

Age at interview 60

Gender Female

Age at diagnosis 42

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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.

But I think, you know, people do need if they don’t have someone they need a an information point I think is is more what they need than anything else.And Parkinson’s disease nurses are one of the best people to give that because they see so many different people with it.They’ve sometimes got a simple solution for a day to day problem that no one would think of, you know.Having said that I now can’t think of one but but they do pass on tit bits of information and I think they move the holistic view to take place.They and the GP.

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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.

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