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Patients with Parkinson’s hide their symptoms, shows survey



Healthcare professionals can help signpost patients with Parkinson’s disease to support and offer practical help in coping, a charity said after it emerged that two fifths of patients had hidden their symptoms from others

Healthcare professionals can help signpost patients with Parkinson’s disease to support and offer practical help in coping, a charity said after it emerged that two fifths of patients had hidden their symptoms from others.

According to a Parkinson’s UK survey of 1,868 people with Parkinson’s disease by ComRes, 37% of people diagnosed with the condition had either concealed symptoms or lied about having the condition. The same number reported the negative emotions they experienced after diagnosis and 18% felt “their world was ending”, with another 13% uncertain about who to turn to.

Younger patients were the hardest to be emotionally hit by the diagnosis.

Parkinson’s UK service improvement programme manager Katherine Frenchsaid primary care staff can help the 127,000 patients in the UK by signposting them to resources about the condition.

They also have a role in answering the questions patients may be afraid to ask.

She said the charity was also keen for primary care staff to understand the resources on offer, such as peer support groups for patients.

“Primary care professionals are really good at encouraging people to be quite proactive in managing their conditions and to ensure that people are getting the right support.”

She said they had a crucial role in making sure patients understand the complexities of their condition and getting the medication regime right. No two patients are on the same regime, she said and primary care professionals need to make sure patients know they should come back to the practice if their medication needs altering for make it work for them.

‘They can also encourage people in the early stages to loop into other primary care services, particularly physiotherapy.”

Referrals to occupational therapy can also help with small adjustments or aids to help them cope with the condition.

Primary care nurses follow up diagnoses which gives patients an opportunity to ask about important issues such as how long they will be able to continue working.

“If you have got a multidisciplinary team within primary care build that relationship (with them), understand that they are anxious, particularly about some of the symptoms if they are a younger age,” said French.

“It’s really about being able to help them understand their symptoms.”