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.’
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.
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.
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.
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.
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.
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.
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.
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.