National charity, Parkinson’s UK, have launched a new pilot referral service in the hope of supporting patients with more direct and tailored care.
With three years between conception and the actual inception of the idea, Parkinson’s Connect was devised in collaboration with healthcare professionals and the Parkinson’s community, ultimately focussing on keeping the patient at the centre and forefront of everyone’s thinking.
One in four of the 8,080 people surveyed by Parkinson’s UK, said that they didn’t receive enough information about the disease at the first diagnosis.
Northumbria Healthcare NHS Foundation Trust has been chosen as one of the sites to trial the new service, as the health sector continues to roll out innovative and citizen-at-the-centre solutions with backlog continuing to rise.
Northumbria Healthcare’s Professor Richard Walker, consultant in elderly care, said: “Prior to Parkinson’s Connect, we would only give someone an information pack about Parkinson’s and ask them to read it.
“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.”
The service will provide patients with the ability to speak to their peers who are also suffering from the disease, the opportunity to be guided through their possible next steps, and access to up-to-date health information that allows them to manage their symptoms the most effectively.
The service will also provide experts guidance on topics not directly pertaining to the disease, covering everything from work and finances to relationships and family life.
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.”
More information about the new referral service is available here.