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Many people ashamed to admit to Parkinson’s disease

Doctors urged to be more proactive in supporting Parkinson’s patients

Adrian O'Dowd

Monday, 18 April 2016

A significant proportion of people with Parkinson’s disease hide the symptoms of their neurological condition or lie about having it, according to research published today.

Clinicians are being urged to be more proactive in ensuring people with Parkinson's get support, after research conducted by ComRes on behalf of charity Parkinson’s UK showed that fear of sharing the condition was preventing patients from getting the help they needed.

There are an estimated 127,000 people in the UK with Parkinson’s disease. This week is Parkinson's Awareness Week 2016.

For the research, 1,868 Parkinson's sufferers were questioned about their experiences of sharing their diagnosis and condition with their friends, family or colleagues.

The charity said the findings revealed an “alarming” level of fear around sharing a diagnosis of Parkinson's, which meant that people could be cut off from vital support.

Two fifths of people with Parkinson's hid symptoms or lied about the condition, which extrapolated to a national scale, could mean that around 42,000 people in the UK were delaying sharing their diagnosis with someone close to them.

Reasons included:

  • they did not want people to feel awkward or embarrassed around them (63%)
  • they were worried they may be judged (34%)
  • they felt like their symptoms were not socially acceptable (32%)

Positively, 45% of people who had shared their diagnosis with their immediate family reported feeling “able to accept they had Parkinson's”.

One in four reported feeling relieved (27%), and 15% said they felt glad they did not have to hide their symptoms anymore.

David Burn, clinical director of the UK Parkinson's excellence network, said: “It is alarming to see that so many people felt that they could not share their diagnosis with those around them because they were worried about the consequences or couldn’t find the right words.

“But it’s also promising to see that those who did have the confidence to share felt it made a positive difference.

“We professionals need to be mindful of this and make sure that we are proactive in encouraging people to access support, whether it's from family, friends or Parkinson’s UK.”

Steve Ford, the charity’s chief executive, said: “It’s worrying that many people with Parkinson’s, for a wide range of reasons, are not able to access the help they need - and it's having a devastating impact on their emotional health.

“We are determined that each and every person with Parkinson’s is aware of the support available so they can feel equipped to have these difficult conversations.”

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