Long Term Thinking: Parkinson’s
In the latest in our series on improving care for people with long-term health conditions, Dods Impact and AbbVie explore the vital need to end the Postcode Lottery for people with Parkinson’s
Parkinson’s is the fastest-growing neurological condition in the world. It affects the nervous system, making it difficult to control movement or maintain balance and coordination. However, treatments and services available to those living with the condition will often depend on where they live. Experts, MPs, and health providers are now calling for urgent government action to end the postcode lottery that the UK’s 145,000 Parkinson’s patients often experience, particularly when it comes to accessing specialist care. Sam Freeman Carney from Parkinson’s UK has heard many stories from Parkinson’s patients about the difficulty in accessing care.
“Our most recent audit of Parkinson’s services found two-thirds of people could access occupational therapy in the West Midlands, whereas only one-third could in the South West,” he tells us. “This postcode lottery is unfair. The planned changes to the NHS over the next few months mean that Integrated Care Systems will need to urgently prioritise tackling gaps in access to all aspects of Parkinson’s care.” The critical need to improve care pathways was also highlighted by the recent pandemic which severely disrupted diagnosis and treatment for those living with the condition. Labour MP Mary Glindon co-chairs the Parkinson’s APPG. She shared her concerns about the impact of recent lockdowns on those living with Parkinson’s with us.
“The pandemic has had a devastating impact on people currently living with Parkinson’s in England” –Mary Glindon MP
“The pandemic has had a devastating impact on people currently living with Parkinson’s in England,” she explains. “Social isolation and the closure of local gyms and support groups combined with cancelled healthcare appointments had a huge impact on the Parkinson’s community. Alongside medication, many people previously relied on these engagements to support them to stay well and manage the physical and mental symptoms of their condition.” Key advocacy groups echo Glindon’s concerns about the way in which Covid lockdowns impacted on Parkinson’s patients and their carers.
“The pandemic hit people hard, but it’s been catastrophic for people with Parkinson’s,” Sam Freeman Carney tells us. “Over 80% of people we surveyed last year said they experienced worsening fatigue (86%), stiffness (83%), and slowness of movement (88%). We are also alarmed by how many people have told us that their mental health symptoms deteriorated at a rate much faster than we would naturally expect in two years.” A new report by health research body Carnell Farrar, commissioned and funded by major biopharmaceutical company AbbVie has now quantified the devastating impact that the pandemic had on people living with Parkinson’s. The report found that neurology referrals decreased significantly during the first wave of Covid-19, dropping to around 20% of pre-pandemic levels with elective admissions plummeting by an astonishing 89%. As the NHS recovers following the pandemic, experts are now calling for action to address the shortfall in care that many have experienced during the last 2 years. This will ensure that people living with Parkinson’s can access the specialist care that they need wherever they live. Todd Manning, UK General Manager at AbbVie shares Freeman Carney’s view that addressing regional inequalities is critical to providing consistent and high-quality Parkinson’s care. “Parkinson’s is a hugely debilitating condition,” he explains. “Levelling the playing field when it comes to accessing treatments and innovative forms of community support could radically improve the lives of those living with the condition. However, for this to happen patients in every part of the UK need to have the same access to treatments, ending the postcode lottery that those living with Parkinson’s currently face.” The critically important role that community-based and self-management approaches can play was highlighted in AbbVie’s recently commissioned research. That analysis suggests that, if we improve support for community disease management, we could reduce unplanned admissions by almost 4,000 and slash bed days by up to 34,000 each year. This would be good news for the NHS and would benefit patients who would be supported to live healthier lives in the community. Mary Glindon agrees that as the NHS resets after Covid there is now an opportunity to focus on new approaches to prioritise care for those with the condition wherever they live. It is an opportunity that she does not want government to miss.
“I echo Parkinson’s UK’s call to the UK Government to ensure that Parkinson’s services are prioritised as we emerge from the pandemic,” she tells us. “The APPG on Parkinson’s is proud to be supporting Parkinson’s UK in urging the Government to improve health and care services for people with Parkinson’s. This will enable people with Parkinson’s to get the vital care they need to feel confident about managing their condition.”