What is the care gap?

It’s usually your loved ones who first notice symptoms of conditions like Parkinson’s. They might even be the ones who encourage you to see a doctor and get a diagnosis.

Many people think this diagnosis will then unlock a world of support from your government or healthcare system, but all too often this simply isn’t the case.

Instead, it’s usually down to the person with Parkinson’s or their partner or supporter (like a family member, friend or neighbour) to go looking for what support might be available, and try to secure it. But the information is often hard to find or understand, and often these caregivers have additional challenges – like a language barrier, or their own health issues – with which to contend.

Yet somehow, as a society, we are still relying on these informal caregivers to provide ongoing, unpaid care to fill a gap left by insufficient support from Europe’s governments and healthcare systems.

And with Europe’s ageing population meaning that there’s less and less young people to provide care, and increasing numbers of people not having any family member which the state can rely on to provide support, Europe has an increasingly urgent care gap – and it’s only going to get worse.

What is the solution?

We are calling on Europe’s governments to bridge the care gap before it’s too late. They can achieve this by focussing on three key areas:

1. When someone is diagnosed with a condition like Parkinson’s, their country’s healthcare system must proactively provide them with information about the support they are entitled to – and provide this in an accessible, easy to understand format.

2. People with Parkinson’s in Europe should have access to a Parkinson’s nurse (or equivalent neurodegenerative nurse for other conditions) who can provide consistent, coordinated information and support, and help the person with Parkinson’s to access the healthcare services they need and choose.

3. European healthcare systems should be responsive to the changing, evolving needs of people with conditions like Parkinson’s, so they can continue to signpost relevant new support as a person’s condition progresses.