In this initial phase, ‘Parkinson’s Connect’ is focusing on support for those who are newly diagnosed with the condition, and healthcare professionals including neurologists, Care of the Elderly consultants, Parkinson’s nurses and consultant physicians are being encouraged to start referring patients.
Three years in the making and with collaboration from leading healthcare professionals and the Parkinson’s community, Parkinson’s Connect has been created with patients at the centre. The system promises to tailor the way in which people living in Grampian affected by the condition access and receive support.
One in 37 people alive today will be diagnosed with Parkinson’s in their lifetime and approximately 1,230 people live with it already across Grampian.
One in four people with Parkinson’s (from 8,080 people surveyed) told the charity that they did not receive enough information about Parkinson’s at diagnosis. And the same amount said their health service did not give them information on how to access Parkinson’s UK support services, or they were not sure if they had.
Parkinson’s UK is the leading UK charity supporting those affected by Parkinson’s, and via the new support pathway, patients and their loved ones can access both online and offline support more seamlessly. Healthcare professionals can direct individuals to one place where they can access personalised and tailored support and information.
Via Parkinson’s Connect, users can be connected with peers who also live with Parkinson’s; speak to someone and be guided through next steps and options; access up-to-date and reliable health information to best manage their symptoms; and find expert tips and guidance on everything from work and finances to relationships and family life. There are also resources available for family, friends and carers too.
Katherine Crawford, Director of Services at Parkinson’s UK said: “Parkinson’s is the fastest growing neurological condition in the world, but it is still often misunderstood so getting the right support can make a real difference to the start of someone’s life with Parkinson’s and their wellbeing. We know there is a real need amongst our community and those that support them to feel empowered and informed about living with Parkinson’s from the point of diagnosis.
“We’ve been providing this support for 50 years and Parkinson’s Connect isn’t about reinventing the wheel, it’s about making it available in one place so that it’s easy to find, and easy for healthcare teams to signpost to. We have been piloting the programme in six areas already across the UK and the feedback from healthcare professionals and patients alike has been overwhelmingly positive.
"Our ambition is that everyone affected by Parkinson's is connected to the right support and opportunities to live as well as possible. We believe partnering with healthcare professionals will support us in reaching that goal."
F nd out more at parkinsons.org.uk/refer