Can’t Wait: How local campaigning delivers for Parkinson’s

At Parkinson’s UK our community’s experiences form the basis of all of our campaigning. If we hear about a service that isn’t delivering, we do our best to support our community to campaign for improvements. 

I wanted to talk about two experiences we’ve had that highlight both the pressures on health and social care, and how we focus on getting the best health and care services.

Hertfordshire

In 2021 our local Hertfordshire group approached our Local Campaigns Officer, Georgina with awful experiences of how they’d been treated as inpatients in the local hospital. Medication wasn’t delivered on time, which worsens Parkinson’s symptoms, the condition wasn’t understood, and staff seemed overworked and too busy to help. 

We can sometimes find it difficult to encourage people to share their stories, as they don’t want to criticise or complain about the NHS. However this time we were inundated with examples, which we shared with the Hospital Trust and urged them to work with us to improve understanding of the condition and services.

Unusually, highlighting these stories to the Trust worked without further cajoling. The Trust met with the group, they involved them in regular meetings on how they could do better, and set up a working group to make improvements. 

So far they’ve delivered:

• A new Parkinson’s specialist to improve access to services. 
• Regular training sessions for staff about Parkinson’s.
• The Trust CEO visiting the local Parkinson’s group. 
• Continued involvement of our volunteers in the ongoing improvement work. 

We’re pleased the Trust listened, and I really hope that other people in our community see the power of speaking up when something isn’t right. 

Lancashire nurse chaos

We were glad to see more accountability introduced into local services with Integrated Care Boards (ICBs), but we’ve found that it’s thrown some of our services into chaos.

Just as things were winding down for Christmas last year, our north Local Campaigns Officer, Kim received a message that the Parkinson’s nurse team in Lancashire had been told they were at risk of redundancy. 

Parkinson’s nurses provide essential care to people with the condition, so to remove the entire service at a few weeks notice, was unfathomable. 

In response Kim wrote to local MPs, the District Council Leads, the CEO and Leader of Lancashire County Council. 

She outlined the urgency of the situation, as over 800 people with Parkinson’s could be left without vital support. 

We were quickly reassured that the commissioned service was safe, but the nurses felt unsure about their security and whether to schedule appointments after Christmas. 

Pressure from MPs Jake Berry, Andrew Ridgewell and Nigel Evans, along with help from the local Council Leader secured confirmation that it was all an oversight. And that in the switch to the ICB the contract renewal had been overlooked.

The nurse contracts have been extended for 12 months and we’re encouraged that people with the condition, and staff won’t face this uncertainty again. However, we won’t be waiting until winter to follow this up! 

The future

Campaigning is often a balance of acknowledging the pressures on health and social care staff while making sure that we don’t let standards for our community slip. 

At the moment, we’re concerned about how far ICB leaders might try and save one service by cutting another – not realising the impact that it might have on people who desperately need care. We shouldn’t let pressures on health and social care services deter us from protecting good services, and asking for better.

That’s why we’re campaigning for better workforce data and an NHS workforce plan that includes allied health professionals as well as doctors and nurses. It’s vital for people with Parkinson’s to receive integrated multidisciplinary care.

We also support our community through our helpline (0808 800 0303), Parkinson’s advisers, and our magazine. One of the latest features shares how people with Parkinson’s can access stretched health and care services. 

But we don’t forget that campaigning and supporting people to ‘speak out’ can also deliver better health and care services.

Biography

Grace Ogden is Campaigns Engagement Lead at Parkinson’s UK.