The levels of treatment being offered to patients with Parkinson’s disease are falling woefully short, hindered by a lack of political will and a lack of knowledge of the condition among the medical profession.

This was one of the key messages put over at a meeting hosted by the European Parkinson’s Disease Association last month in Florence. Addressing a media briefing at the European Federation of Neurological Societies Congress in the Italian city, Fabrizio Stocchi, Director of the Parkinson’s Disease and Movement Disorders Research Centre at the IRCCS San Raffaele, Rome, told journalists that “current gaps in understanding about management and treatment are leading to failures in both diagnosis and care”.

He highlighted a number of misconceptions about Parkinson’s, notably the view that it is a disease that only affects the aged. In fact, one in four patients start to suffer before the age of 50 and Prof Stocchi also noted that while rest tremor is a major characteristic, and is the most common presenting symptom, 27% of patients never develop it.

He also said that “even when there is a correct diagnosis in place, the tendency is often to delay treatment for as long as possible”. He added that this is “not only negatively impacting patients’ lives but also wasting taxpayers’ money”, concluding that “early Parkinson’s intervention may slow disease progression, improve the quality of patients’ lives and is also associated with significant direct and indirect cost savings”.

However amid the doom and gloom, Bastiaan Bloem of the Radboud University Nijmegen Medical Centre gave details of an initiative in the Netherlands that is proving to be highly successful. Prof Bloem co-developed the regional ParkinsonNet, set up in 2004, which involved the setting-up of networks of physiotherapists across the country and says that key to the concept is the notion that the patient is not passive in the process but plays a vital part in choosing which healthcare specialists they wish to deal with.

A significant number of Parkinson’s disease specialists have signed up to ParkinsonNet and adhere to a multidisciplinary guideline, which patients have actively helped to produce. The initiative has led to patients receiving earlier diagnoses, improved multidisciplinary care and early access to treatments that can slow symptom progression, Prof Bloem said.

He noted that ParkinsonNet is extremely cost-effective, leading to savings of 700 euros per patient as it cuts the need for constant referrals and improves communication between neurologists and physiotherapists. The Dutch government has claimed that it has already saved an estimated 42 million euros directly because of the programme.

EPDA patron Mary Baker announced plans to launch a new campaign, Move for Change, which will include further research into Parkinson’s management and treatment and “carefully coordinated activities directed at European and national parliaments, medical professionals and the public". She noted that change is needed at the highest levels to ensure that people with Parkinson’s “receive proper diagnosis and the right treatment, at the right time,” adding that “ignorance is costing everyone, not just those affected by the disease”.