NOBODY REALLY KNOWS US

Help thousands of people with Parkinson's-related dementia. Tweet your MP and ask them to support the recommendations of our report Nobody really knows us. 

The health and care needs of people with Parkinson’s-related dementia, their carers and loved ones are being neglected.

Parkinson’s UK’s new report Nobody really knows us shows the extent of this problem and makes clear recommendations on what could improve the lives of thousands of people. 

We want to make sure the government takes action, will you tweet your MP and ask them to support the recommendations in our report? If you don’t have Twitter you can write an email to them here. 

In trying to obtain a diagnosis, accessing treatment and support for carers, people are being let down by the health and social care system. Our report found:

  • On average it took 6 months to get a diagnosis of Parkinson’s-related dementia.
  • Only 14% of healthcare professionals said their training had prepared them 'well' to provide high-quality care for people with Parkinson's-related dementia. People affected by this told us they feel "nobody really knows us.”
  • Half of unpaid carers of people with Parkinson's-related dementia are providing over 70 hours of direct care per week. Yet only 15% have accessed respite care. 

Please let your MP know that people with Parkinson’s-related dementia need their help.