Parkinson’s patients face unacceptably long waits to be seen and too often get their medicine late causing longer stays in hospital, a report has revealed.
In the most comprehensive analysis since before the pandemic, Parkinson’s UK found many people are often kept in the dark about how to manage their disease.
The charity said their findings highlighted a lack of progress since 2019, even deterioration, in key areas, including early referral to therapy services.
The UK Parkinson’s Audit 2022 investigated the quality and experience of care for the 145,000 people living with the condition. It found a lack of joined-up care, which means that people with the disease have to navigate their way between the different specialists they need to see.
Some 40 per cent of newly diagnosed people with Parkinson’s are not receiving enough information about the condition or are unsure if they have – the same figure as the last audit in 2019.
And only 42 per cent of respondents admitted to hospital consistently receive their vital medication on time, causing worsened symptoms and longer stays in hospital. Of those who did not always receive their medication on time, just under 40 per cent said this had a negative or significantly negative effect.
Getting medication on time is essential for preventing symptoms from becoming uncontrolled. If medications are delayed, this can increase someone’s care needs considerably and trigger irreversible decline.
People with Parkinson’s also have to wait a long time to see a therapist, where they are able to get an appointment. Only 45 per cent of people with Parkinson’s have access to an occupational therapist, 62 per cent a physiotherapist, and 40 per cent a speech and language therapist – all essential members of the Parkinson’s team.
Although a majority of patients are seen by specialists within two months, the number waiting more than 18 weeks for an initial appointment with a physiotherapist rose from 7.9 per cent in 2019 to 13.1 per cent last year. This could be down the effect of the pandemic, the report said.
Just under half of patients were seen by an occupational therapist within four weeks of referral, with 12 per cent breaching the NHS ‘referral to treatment’ target of waiting no more than 18 weeks.
Parkinson’s UK said the report highlighted the need for healthcare workers to consistently use standardised practices, guidance and outcome measures to reduce variation and improve quality of care. It also revealed the need for more education about Parkinson’s and the latest evidence-based practices, to help NHS staff offer the best care possible.
The charity said their 2019 report had led to some improvements in care, such as a significant improvement in the assessment and management of bone health. People with Parkinson’s are more than twice as likely to have osteoporosis and fractures than those without the condition and managing their bone health helps them avoid fractures, which can have devastating consequences.
Dr Rowan Wathes, associate director at Parkinson’s UK, said: “The audit has demonstrated lack of progress, or even deterioration, in key areas, including early referral to therapy services, waiting times, standardised assessments, and care planning.
“Through the Parkinson’s Excellence Network, we are working with healthcare professionals and people with Parkinson’s to improve services where we can through funding nurse and therapist posts, providing educational resources and support for quality improvement projects. The audit shows how vital our work is for people with Parkinson’s, many of whom are struggling to stay warm and eat well in the face of the rising cost of living – a further risk to their health and wellbeing.
“Meanwhile, NHS staff face the challenge of providing good Parkinson’s care in the face of increasing demand, more complex care needs and a shortage of staff. Despite these challenges, the uptake of the audit shows that the nurses, therapists, doctors and other health care professionals who make up the multidisciplinary Parkinson’s team are committed to providing the best service they can to people with Parkinson’s.”
The latest audit reported on the care provided to 9,760 people with the condition during a five month period. Details about 506 clinical services from across the UK were also collected, as well as the views of 6,795 people with Parkinson’s and their family, friends and carers via a patient experience questionnaire.
The Department of Health and Social Care has been approached for comment.