Parkinson’s UK driving forward personalised services for the newly diagnosed

National charity, Parkinson’s UK, has launched a new referral service that allows healthcare teams to give direct access to its new support service, ‘Parkinson’s Connect’, for those who are recently diagnosed with the condition. 

Three years in the making and with collaboration from leading healthcare professionals and the Parkinson’s community, Parkinson’s Connect has been created with users at the centre.  With direct access to trusted and personalised support services for those who are newly diagnosed, it is designed to be a one-stop shop, from the very first point of diagnosis.

1 in 4 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.”

Vicky Marshall, Neurology Consultant at NHS Greater Glasgow and Clyde, has been part of the pilot service testing Parkinson’s Connect. She said; 

“Prior to Parkinson’s Connect, once a patient was diagnosed with the condition I would need to make a paper or email referral to a Parkinson’s Nurse or Parkinson’s UK local Advisor. But this was never immediate and could take a short while for them to be contacted and in the meantime,  we could only signpost to the general Parkinson’s UK website. 

“Often there is so much to go through at the clinic and sometimes people just need time to digest the diagnosis, but when people are ready, I think knowledge becomes everything. Being able to tell people about Parkinson’s Connect and create a profile for them so they can dip in and out, has been a bit of peace of mind for us too. It’s also an incredibly easy way to get patients and their families really quick access to a team of advisors.”

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