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‘The importance of good communication in a Parkinson’s diagnosis’: a joint film by the EPDA and Parkinson’s UK

Jennifer Stratten

Empathy and understanding are vital when doctors give a Parkinson’s diagnosis to their patients, a new film by two leading European Parkinson’s organisations shows.

The European Parkinson’s Disease Association (EPDA) and Parkinson’s UK have produced a film highlighting the importance of good communication when doctors give their patients a Parkinson’s diagnosis.

The six-minute film features discussions between UK Parkinson’s specialist neurologist Anette Schrag and four people with Parkinson’s. Using the participants’ different experiences of diagnosis during the film, Prof Schrag provides recommendations that will help doctors communicate a Parkinson’s diagnosis as positively as possible.

The four people with Parkinson’s individually explain that when they were faced with their diagnosis, it was a very difficult and often unpleasant experience.

EPDA data from its 2010-13 Move for Change campaign – shown at the start of the film – demonstrates that nearly 50% of people feel their diagnosis was “poor” or “very poor”.

The film reveals that being told this important and life-changing diagnosis with empathy and understanding – and being given advice about Parkinson’s, with guidance on where to seek support – were of key importance to their respective Parkinson’s journeys.

“The film gives a real insight into what a person with Parkinson’s needs at the time of diagnosis and afterwards,” says the EPDA Executive Director Lizzie Graham. “People with the condition often just need time, reassurance and understanding that they are not alone, and that the future can be much brighter than they first imagine. Providing a person with Parkinson’s solid support at the start of their journey can give them a positive mindset, and enable them to come to terms with living with the condition.”

At the end of the film, Prof Schrag provides the following six recommendations for doctors when diagnosing a person with Parkinson’s:

  1. Ask the person what they suspect their symptoms are due to. This helps form a suitable response;
  2. Explain how you reached the diagnosis;
  3. Show empathy: this is a life-changing diagnosis;
  4. Positive actions can be taken, such as effective medications and lifestyle changes;
  5. Signpost people to appropriate information;
  6. Provide a follow-up plan and a point of contact, such as a Parkinson’s nurse or other healthcare professional.

Although the film is directed primarily at healthcare professionals, it remains essential viewing for anyone who is involved with or connected to Parkinson’s, explains Graham.

“We want people directly affected by Parkinson’s – especially people living with the condition or their families – to take these recommendations into their own consultation meetings,” she says. “We hope the film will provide people with inspiration to begin new conversations with their doctors that will lead to better care and treatments.

“Supporting a person with Parkinson’s from the start of their journey is so important. It is essential that people receive a good Parkinson’s diagnosis, and we hope this film – and these six recommendations – will lead to better statistics in the near future.”

For more information about Parkinson’s diagnosis, visit About Parkinson's - Diagnosis or email info@epda.eu.com.

Comprehensive information about everything you need to know about Parkinson’s can be found at www.epda.eu.com and www.parkinsons.org.uk.

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