Northumbria Healthcare part of pilot for new Parkinson’s support service – Northumbria Healthcare NHS Foundation Trust

In this initial phase, Parkinson’s Connect is focusing on support for those who are newly diagnosed with the condition, and is encouraging healthcare professionals across the UK 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.  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.

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 among 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.”

Northumbria Healthcare’s Professor Richard Walker, consultant in elderly care, has been part of the pilot service testing Parkinson’s Connect at North Tyneside General Hospital.

“Prior to Parkinson’s Connect, we would only give someone an information pack about Parkinson’s and ask them to read it,” he said. “If they had any concerns we would signpost them to a helpline, but this relied on people being proactive and unafraid to ask questions. There is lots of misinformation on the internet, so it’s vitally important people are signposted to a genuine and accurate source of information.

“I should imagine that people are quite pleased to be able to talk to someone who is not necessarily part of their clinical service once they have been diagnosed with Parkinson’s, because there might be questions that you want to ask that are not clinical, or you may not want to ask your clinical team about. So this does certainly plug a gap. For many people it is quite devastating when people first discover they or a loved one has Parkinson’s. Parkinson’s Connect gives them a feeling they are not alone and that’s actually very important.”

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