Policymakers could score a 'quick win' by ensuring people with Parkinson's receive physio swiftly

Human and economic costs underestimated

The report estimates that 14.5 million people are living with these conditions and that the direct and indirect economic burden that ensues is more than 4.3 per cent of the nation’s gross domestic product (GDP) in 2019 – equivalent to at least £96 billion.

Mr Kielstra and his colleagues accept that existing interventions for the diseases included in the study substantially reduce this toll. They examined the ‘amenable burden’– the extent to which it is possible to reduce the toll of these diseases by adopting the best current practices in preventive, treatment, and rehabilitative interventions.

They conclude that the human and economic costs are far higher than necessary for the diseases included in the study. Direct and indirect costs can be reduced by about a third, they estimate. The ‘amenable economic burden’ for the 10 diseases studied was estimated as 1.4 per cent of GDP in 2019 – equivalent to £30.8 billion for the UK.

Concerns over tardy referrals for physiotherapy 

The report notes that the Parkinson’s UK Excellence Network conducts regular national clinical audits. 'The 2022 edition found that, despite several strengths in the health services, improvements still need to be made in the access to multidisciplinary care, better medication management and standardising practice.

'Particularly relevant to the findings above on physiotherapy, only a quarter of patients are first referred for this service in the diagnosis stage, when NICE [the National Institute for Health and Care Excellence] recommends that it be done. Perhaps more concerning, fewer than half of patients in hospital received their doses of levodopa on time – an important contributor to its effectiveness.'

Particularly relevant to the findings above on physiotherapy, only a quarter of patients are first referred for this service in the diagnosis stage, when NICE recommends that it be done [Paul Kielstra]

Conclusion: a 'Cinderella Service'

In the conclusion to the 33-page report, Mr Kielstra notes: ‘Change is necessary at both the coalface of care provision for individual conditions and at the broader, strategic level.

‘Such a strategy should consider a full range of approaches to improve the lives of patients and carers. These begin with new and innovative treatments, but need to go beyond a purely medical approach. In particular, to bring down the high indirect costs to the economy, much of which are borne by carers, better social care for those with neurological conditions will be essential [which] is particularly relevant as the prevalence of Alzheimer’s disease and Parkinson’s disease grow with population ageing.’

The priority should be to create a ‘holistic strategy targeted at reducing the burden of neurological conditions in the UK’ – without which attempts to bring in multi-faceted and integrated interventions will falter, the report warns.

‘Perhaps the most immediate need on the strategic side is the one that so far has never been met. Those conditions for which the prevalence falls in the gap between small enough to be covered by rare disease policies and large enough to merit inclusion in the Major Conditions Strategy – such as MS and Parkinson’s disease – require greater attention than they currently receive. Otherwise, the decades-old description of neurological care as a “Cinderella Service” will remain true in the years to come.’

Parkinson's UK responds

In a post on X (formerly Twitter) on 26 February, Parkinson's UK said: ‘Great to be the launch of today’s important @economistimpact #ValueOfAction report - we’re highlighting the urgency of tackling the economic challenge of Parkinson’s by improving care - and we’ll be letting MPs know how they can help’ (@ParkinsonsUK).