Most of the ongoing care for Parkinson's disease happens in the hospital outpatient clinic. A neurologist, geriatrician or physician with special interest in Parkinson’s disease is the key person responsible for care. In many areas there is also a Parkinson’s disease nurse. Some hospitals also run a ‘movement clinic’ with specialist physiotherapy and occupational therapists, and in exceptional cases counsellors and advisors on social issues.
During their working life, GPs see relatively few people with Parkinson’s disease and so have only limited knowledge of the condition. Although several people accepted that their GP may not know very much about PD, they wanted them to have an interest in it. Geraldine was impressed when her doctor said to her, “I don’t know anything about early onset Parkinson’s disease but I’m willing to learn if you will teach me.”
Divorcee with three children. Head of Charities Commission. Retired.Now works between Toronto and Wells as a part-time consultant on social finance and governance.
My GP here is a young GP, he’s new to the practice. So he moved here when I moved here and I was assigned to one of the more mature ones probably because I had Parkinson’s disease and he was a very nice doctor but, you know, it was just run of the mill stuff. Well, to me it’s not run of the mill stuff, it’s my life, you know, and it’s not a very pleasant life a lot of the time. The young doctor said to me, “I don’t know anything about early onset Parkinson’s disease but I’m willing to learn if you will teach me.” You know, because he said it’ll benefit others. It it’s a learning experience and he is the gate-keeper to the resources I need. So we formed that kind of relationship and he’s been very good, you know, he has access to the small amount of services there are but it’s so diverse across the country as a whole.
Some people took information to discuss with their GP at their appointment. Fiona had given her GP an article about the benefits of physiotherapy. He thanked her for this and later referred her husband for physiotherapy.
I mean I remember going, just after I was diagnosed I remember going up to my GP to get my prescription and he says, “And what can I do for you?” And I’m saying, “Oh I’ve got Parkinson’s.” “Yes but why are you here?” And I thought, you know, ‘is this how it’s always going to be. Are they never going to know anything about it?’ which is pretty much how it has been to be honest.
When ropinirole, which is one of the treatments that I’m on, when ropinirole first became available for, for me to take, I went up and I asked, I said that, you know, “I would like to be put on to this because it’s a better form of treatment for me at the moment because it, it was better for you when you’ve had first been treated for Parkinson’s.” And my GP just kind of looked blankly at me. He just didn’t have a clue, knew nothing at all about the treatment or anything. Didn’t even understand really what, what it was all about, and we had to come home and run it all off from the internet and run off sheets and sheets about it. Take it up to them and eventually after about three or four weeks I got put on to the ropinirole and it’s been great ever since, you know, it’s a really good treatment, well I feel it is. I don’t suppose, I suppose like any other treatment it’ll depend on the person theirselves you know? But it’s been very good for me, it’s helped me a lot.
The consultant neurologist is responsible for drug management and so the GP usually has minimal involvement in the ongoing care of people with Parkinson’s disease. John was of the opinion that GPs knew nothing about Parkinson’s disease but excused them on the grounds that they were too busy. But he did mind the impression that they weren’t interested. Anna was surprised by the reticence of her GP in talking to her about her partner’s condition. She felt that he didn’t appreciate what a profound impact it had on her as well as on him. She did speculate that he might be reluctant to talk about Rafa behind his back. Natalia resented that her GP had persistently failed to accept her symptoms for what they were, attributing them to her bereavement. Wendy on the other hand felt confident that her GP would be able to handle any problems she might present her with and would refer her on to the neurologist if it was appropriate.
Experiences of ongoing care through the hospital vary from person to person for a number of reasons. People should have access to a neurologist with whom they can develop a continuing relationship and benefit from their specialist knowledge and experience of Parkinson’s disease.
No there was no plan whatsoever. And yeah that would have been, that would have nice actually to sort of, to know that there was that support if I needed it. And you know, these are the things you have access to and this is what’s going to happen when such and such happens and, It’s very difficult to know because everyone is different and this is why, this is the, this is why I think it’s important to listen to the patient, to listen what the patient wants and to ask the right questions to ensure that, you know, you know what the, the patient wants. Because only then can you make the right decisions for them or discuss the decisions with them so right ones are taken.
Unfortunately people often felt that the 10-12 minutes they were given once or twice a year was not enough to establish a relationship. Several people said that instead of seeing the consultant at the follow-up appointments they usually saw a registrar who changed every six months. Rex said that it was disappointing to have a registrar he felt confident about at one appointment only to find that next time he had gone. Angela thought that registrars knew very little to begin with, but that at least they were probably good learners. Some people lived in an area with too few consultant neurologists. For Gina this was disastrous as her appointments were over a year apart so that her serious gambling problem (a side effect of medication) went undetected.
Married, 2 adult children, working full time as a technical author.
As I said, I’ve got a lot of respect for the specialist consultant I see at the Hospital. I really rate her very highly. They’re always there to help. They’re always only just a phone call away and I have had this feeling that you sort of develop as a team. That’s certainly the way that it’s happened with her. And she always seems to have a genuine interest in where I am and she gives me some ideas about the way I’m going in the future. So I’ve always got that information. I found that really useful and think it’s a two way thing. And it does also help you in the fact that you feel that you’ve got that level of support. But that’s very much down to her integrity and her interest as a person. But that does come through and I think if I had somebody who was slightly more sterile and, you know, it’s like having a, not a casual conversation, but it’s understanding your lifestyle as a patient and what works for you and what doesn’t work for you. So there’s possibly more than a medical interpretation that’s needed. There is an interpretation that you have to understand. You have to get in to the person psychology as well, which is perhaps difficult to, to explain. But that, that’s definitely how it works for me. And because I’ve got good relationship, it helps me and it gives me confidence in, in the information I give and the decision making. I’ve got confidence in that.
An important quality in Andrew’s neurosurgeon is that he can ask him anything and that he doesn’t talk down to him. Elisabet is less comfortable about her neurosurgeon, who having carried out two hundred or more Deep Brain Stimulation operations seems mostly concerned with adjustments to the battery and voltage of the stimulator.
Married, 2 children, still working as a nutrionist.
I am constantly surprised by the neurologists. They go after neurological symptoms. My physiotherapist goes after muscular symptoms and I experience in addition, cognitive and other symptoms and feelings that together all of this is the illness. And we have now one specialism taking care of each of these compartments and that’s somehow frustrates me. And I wish that one day the neurologist would reach out to the physiotherapist and say “Ah, this must be the reason why that is the result.” And now that we have this wonderful deep brain stimulation possibility of abating some of the symptoms, maybe it could be done even more targeted, if they understood why this neurological function has that muscular result. So I’m actually asking for a Leonardo Da Vinci.
Several people had consulted a neurologist privately because they were not happy to wait weeks or even months for their initial appointment. Usually they had later been able to see the same consultant as an NHS patient.
I mean I got my own car park space. What would I like to eat. What sandwiches do I like. So I come in, turn up, park the car in my car park space, walk upstairs talk to the lady at the desk and then come home again. I have never seen so quiet and easy going life then actually doing that, because when I go to the National Health. I was in the city I was sitting down there in the cubicle at this time and I looked at the place and there was blood from the wall, spurted up the wall and the ceiling and I thought oh God. And then a little bit later a patient died in the place, in whatever ward it is, or whatever area it is and we all got closed down and sent home. We got told it would be quite a few hours yet. So I got in my car and came home. So there is a vast difference between private and National Health. But I must admit there is not a lot of difference in treatment.
For many people the quality of their care was vastly improved when the department where they saw their consultant had a Parkinson’s disease nurse. Not all had funding for this. Sometimes the nurse was shared with another hospital or another department in the same hospital. Limited funding means that nurses can only advise patients actually living in the area where they are employed. Fiona’s husband lived in a neighbouring area and could not consult the PD nurse who worked for the consultant he was seeing.
Appreciation of the Parkinson’s nurses was universal. The Parkinson’s nurse often encouraged people to contact her by phone whenever they needed to. Sharon found that for some things, lifestyle and symptoms for instance, it was much easier to talk to the nurse than a consultant. As Geraldine said, people need somewhere to go for information, and the nurse’s approach is holistic. David saw the nurse more often than his consultant, and if there was any problem she could ask the consultant for some advice. Nicholas pointed out that the nurse can advise on medication needs and regimens as well as lifestyle and other activities.
Married, 2 adult children, retired Teacher. Chairman of the young person's network.
The other person who has been a great help has been the local Parkinson’s Disease Nurse Specialist and she’s very accessible. I can ring her up and if she’s in the office I can go and see her almost immediately and she’ll talk over problems with me, suggest solutions and I feel much happier when I’ve seen her. Whereas to see my specialist in [town], although they have an open access appointment system so I can turn up on a Wednesday when they hold their clinic and see him at some point, it’s not as convenient as ringing up my Parkinson’s Nurse. I’m quite happy with the National Health Service what they’ve done for me and my Parkinson’s.
Some parts of the country have movement clinics with staff trained in the particular needs of people with Parkinson’s disease and other movement disorders. However, these are few and far between. Several people felt that the physiotherapy on offer at the hospital was not appropriate for them. When Wendy's GP referred her for physiotherapy she was told they could only do ‘recovery’ physiotherapy. There was no provision for chronic disorders and nothing to help specific PD problems like balance or posture. Some people however did get this and it had helped them to improve their mobility and to learn how to deal with freezing.
Married, 2 adult children, retired special needs teacher.
The physio was brilliant, it gave me, it taught me how to break the spasm, gradually increase the use of my left arm, improve my mobility by going up and down the stairs and it was wonderful as long as it lasted. I did so well on that and with the drugs that it stopped after a while but I gather it's rationed anyway round here.
I had hydrotherapy as well from the same physio service and I should have been rationed to eight sessions but because of the nature of the work I'd done before I was able to emulate people with various different disabilities so I was used as a dummy, a model in the pool by the principal hydro so I actually got about three months, it was good, of weekly sessions
What difference did that make?
Oh that was wonderful, made me much, obviously I could do things in the water. Most of it probably was to do with confidence but it was confidence and increased mobility so that I was more stable for walking, I had a better gait.
Brian had found it hard to keep doing the exercises he had been taught on his own. Recently he had been enrolled in a research project in a gym where he was being taught to stretch his tendons and believed this would help his balance.
It’s so important there’s a multi-disciplinary team for someone with Parkinson’s. They can’t just rely on one person to look after them who, who sees them for twelve minutes every six months or something. It just can’t work like that because someone needs to be monitoring them and actually they should be monitoring themselves as well. There needs to be more self-assessment in Parkinson’s, and patients looking after themselves, engaging more in their own illness, communicating with their clinician, with their nurse specialist, with physiotherapists, all the team they need to have a whole team around them to look at the various aspects of the disease and to really be there to help. Because it’s not just about tremor, Parkinson’s it’s a whole different, there are all sorts of other things, behavioural, there’s muscle that, there’s sexual problems, there’s, dribbling, there’s constipation. All these, tons of things which are all involved with Parkinson’s which people just don’t think about and it’s only recently now that patients have actually kicked up a bit of a fuss about these things that, that actually neurologists and, and eventually pharmaceutical companies are taking notice and providing the treatments that are necessary, that are actually, you know, physically and mentally affecting patients with Parkinson’s.