Slovenia

• Zvezdan Pirtošek discussed the results from his search for possible descriptions of Parkinsonism in centuries before James Parkinson's seminal description in 1817. He found fragmentary references in a text of an Egyptian papyrus (c. 1350-1200 BC), in the Bible (Ecclesiastes), in the Sanskrit Ayurvedic medical texts, in Chinese classical works 'Nei Jing' and 'Chan Zen', and in clinical observations of Galen. He also commented that Rembrandt and Leonardo da Vinci may have suffered from PD.

Impact of PD on families

A wife's perspective of PD and its impact was described by Ema Kocar. This was a personal story, simultaneously sad and happy, often humorous, but above all, touchingly human.

A multidisciplinary approach The afternoon session on the management of PD was dedicated to the increasingly recognised importance of a multidisciplinary approach. Lidija Ocepek presented a Slovenian model of such an approach as developed at the Ljubljana Centre for Extrapyramidal Disorders. Here, patients are taken care of by a team of experts, consisting of a neurologist, a PD nurse, an occupational therapist, a psychiatrist, a psychologist, a social worker and, if needed, other specialists (speech therapist, dietician, neurosurgeon). The PD nurse actively participates in the diagnostic process and in the management of patients. He or she co-ordinates the work of the team and assists in research trials. In addition, the nurse provides a vital link between the patient, their family, their GP, the neurologist and other members of the team, contributing to an optimal quality of life for people with PD and their carers.

Jelka Jansa discussed the neglected role of occupational therapy in the management of PD. She highlighted human occupation as the core of occupational therapy and defined it as doing meaningful work, play or daily living tasks. The description of environmental influences on PD patients' functioning was of particular interest. These influences can either constrain (stairs without rails, narrow spaces, low family understanding and acceptance of a PD patient) or facilitate (environmental control system for lights and other frequently I used devices) everyday functioning.

Serbia

The last session of the first day dealt with the cognitive and behavioural aspects of PD: depression, dementia and psychosis. Vladimir Kostic stressed that depression and anxiety are the most common and frequently disabling psychiatric conditions that accompany PD, but also, that there is no doubt that depression in PD is a treatable, albeit under-treated, condition.

Mary Fogarty reports on the second day of the EPDA's 10th anniversary conference

(abridged from article in Focus Issue 20, p8, 9)

Quality of life (QOL) was a big issue on the second day of the EPDA conference. Mary Baker opened the day with a discussion of the results of the Participation in Life Survey. The Survey looked at symptoms and medication related, emotional and psychiatric problems. The results showed a depressingly severe impact on QOL.

• Tiredness affected 93% of patients
• 78% were miserable or depressed
• A further 64% experienced medication-related complications
• 75% said they planned their day around their medication schedules

Mary said, as she highlighted the embarrassment for patients of bladder dysfunction (43%), bowel dysfunction (72%) and sexual dysfunction, as well as an increase in menopausal symptoms. Also, two-thirds of patients report having difficulty getting to sleep.

So, PD is a struggle - with symptoms, with side-effects, with big QOL issues. But there was some good news, Mary concluded, as 84% of patients say they have good relationships with their families. And, she said, 'We, the professionals, have to listen and learn' from the people with PD, and the Participation in Life Survey offers guidelines for improving services and developing better management of the condition.

Global PD Survey

Professor Leslie Findley, from Oldchurch Hospital in Essex, UK reported next, on the Global Parkinson's Disease Survey which was set up to investigate QOL in developed countries. There had been few studies before of QOL. He said that patients considered QOL to be 'individual, subjective and variable' and that those who can develop coping strategies are better able to live with the condition.

The Survey measured health related QOL (HRQL) on the PD Questionnaire 39 scale and found no close correlation between disease severity and QOL. 'The dominant domain was the emotional state of the patient', he said, pointing out that depression (as measured by the Beck Depression Inventory), satisfaction with the explanation of the condition at diagnosis, and current feelings of optimism, all had a significant impact on HRQL. Patients with PD 'don't necessarily need more clinicians but more services to cope with the huge impact of the disease', he concluded.

Economic and emotional cost of care

Dr Clive Bowman, Medical Director of BUPA (British United Provident Association), followed, with a radical way of looking at the economic and emotional cost of care. Patients with PD, he said, are classified first as a patient and then, when moved into care homes, they become 'residents', although their treatment becomes more complex. So, care diminishes as the disease progresses, but costs escalate and one of the principal reasons for this, he pointed out, is the cost of nursing home care.

He had conducted a study that found a 6% prevalence of PD in nursing homes - based on there being more than 20,000 residents, and, with PD and care home fees of £20,000 per year, this is a total cost of £400,000 a year spent on PD in homes.

Why not base specialist nurses around the, care homes, he suggested, introducing the nurse to patients at an early stage, but only really having much contact with him or her at the rehabilitation stage when they could sort out suitable services. He pointed out that the only specialist care home in the UK, the Mali Jenkins house, has care assistants specially I trained to understand the problems of PD - 'it's not rocket science but it works'. And if the patient receives understanding from this nurse, 'how much more reasonable to enter terminal care with confidence', said Dr Bowman.

PD Life

Another study, the PD Life (which is also included in EPDA projects on page 10), was discussed by Dr David Burn, from Newcastle General Hospital, UK. This study aims to provide a comprehensive assessment of all the drugs now available for the management of PD, which will provide an evidence base which is increasingly important as the population ages. When there are only finite resources but patients are more informed than ever, due to the press, the Internet, etc, this information will be vital for organisations such as the National Institute of Clinical Excellence in the UK. At present, 14 UK centres are taking part, and the study is also being conducted in the Czech Republic and Germany.

Dr Burn said that similar studies in the past have been too small, of short duration, and contained only 'typical' trial patients (ie excluding any with difficult complications). The hope with this study was that it would be sufficiently large and realistic to present some convincing results.

INFO PARK

Another study being conducted at the University of Turku in Finland was described next, by Dr Pirkko Routasalo. INFO PARK 'aims to improve QOL and healthcare as well as to empower and increase the autonomy of older European citizens living with chronic disabling conditions such as PD'. It also aims to increase knowledge and understanding amongst healthcare and social care professionals, and to extend an existing network so that knowledge obtained through this study can be disseminated more widely and possibly applied to other chronic illnesses.

This data is being collected through interviews with 250 patients at differing stages of their disease and also 250 carers in seven European centres.

Dr Routasalo said that the work done so far was 'already a major information source for carers' and the hope was to build up an extensive database, with cultural and national analysis, and recommendations for policy and service development for the care of older disabled people.

Multilingual website

A multilingual website on PD was next on the agenda. Dan Coene, from September Multimedia, explained that they have been working closely with the EPDA to produce this website, which will contain almost all the information from the Self-care Manual/CD-ROM, and will be available in English, German, French and Spanish.

PD in younger people

Dinah Gould, from South Bank University in London, UK described the PD in Europe pilot study they had devised for younger people with PD - ie under 50 years old. The idea was to compare two groups - 1 5 people with PD and a control group of 15 - to determine the specific needs of those with PD. But there was a major difficulty in recruiting younger people and it was hard to get those who did to talk to researchers. So far, however, the results are showing that younger people with PD have more difficulty with mobility, more problems with activities of daily living and more difficulty concentrating.

Centres of excellence

The 'Centres of Excellence' idea is a new EPDA project which has recently been initiated, and if successful will be extended across Europe. An example of this approach was described by Dr Nir Giladi, Director of the Movement Disorders Unit at Tel Aviv Medical Center in Israel. He discussed the Center's multidisciplinary approach: all the different professionals involved are based in the clinic, so that a patient can see all of them when necessary in the same place. The nurse is the key co-ordinator and as such is a major factor in the team.

Group therapy is a major aspect of the Center, said Dr Giladi, with physiotherapy groups of 10, and patient support groups of young/old, males/females, mild/advanced and communication therapy to help patients express themselves in public.

Dr Giladi stressed that the term 'family' is important - he said they are not just treating the PD patient, but also the entire family. 'They choose us and we must try to satisfy their choice'.

Deep brain stimulation

Giuseppe Carbone, from Medtronic Europe SA, described Activa therapy, which involves deep brain stimulation - delivering carefully controlled pulses of electrical stimulation to precisely targeted areas of the brain using an implanted medical device. He explained that there were many centres qualified for Activa therapy throughout Europe, with very good figures in countries such as Switzerland, Sweden, Norway, Denmark and France. However, although Switzerland treats 30% of its potential patients this way, only 5% receive it in the UK where, according to Mr Carbone, 'the Government doesn't care so much about the QOL.:.

Mike Robins, a 58-year-old businessman from the UK, spoke movingly of the onset of his PD, described as 'stress' by the GP and mercury in the teeth by the chiropractor. After lengthy stress counselling, he wound up with appendicitis in a hospital in Shanghai. A young Chinese doctor asked him 'why you shaking?'. 'Oh, it's just stress,' he replied, to which she countered: 'no, no, it's Parkinson's'. He then tried a cocktail of drugs, but felt terrible. Eventually, he paid to have Activa and actually demonstrated the difference on stage. When he switched it off, his right side began to shake so violently that I am sure the whole audience was with me in wishing him to turn it back on immediately. In his words: