A far-reaching audit of the quality of NHS Parkinson’s care – the most comprehensive analysis since before the pandemic – has revealed that people with Parkinson’s are struggling to get access to the specialist care they need to manage their condition and stay out of hospital.
Through the persistence of Parkinson’s UK and health care professionals collaborating through the Parkinson’s Excellence Network, we have seen positive change in some areas of care. However, the audit revealed a worrying picture in many important areas.
The UK Parkinson’s Audit 2022, carried out by the Parkinson’s Excellence Network, is the only national Parkinson’s audit in the UK and investigates the quality and experience of care for the 145,000 people living with the condition.
The audit highlights a number of issues for people with Parkinson’s:
• There is a lack of joined-up care, which means that people with the condition have to navigate their way between the different specialists they need to see.
• 40% of newly diagnosed people with Parkinson’s are not receiving enough information about the condition or are unsure if they have.
• Only 42% of respondents admitted to hospital consistently receive their vital medication on time, causing worsened symptoms and longer stays in hospital.
• People with Parkinson’s have to wait a long time to see a therapist, where they are able to get an appointment. Only 45% of people with Parkinson’s have access to an occupational therapist, 62% a physiotherapist, and 40% a speech and language therapist – all essential members of the Parkinson’s team.
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.
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.
Not receiving medication on time also contributes to an increase in the length of hospital stay for a person with Parkinson’s and may lead to further health problems. Of the 21.2% of respondents who had been admitted to hospital in the last year, only 42% consistently got their medication on time. Of those who did not always receive their medication on time, 39.6% said this had a negative or significantly negative effect.
Although the majority of respondents (59.5% of those who answered) said they had received enough information about Parkinson’s at diagnosis, there were still 40%, the same as in 2019, who had not received enough information or were not sure if they had.
Leading improvements in care
The UK Parkinson’s Audit is important because it shows healthcare professionals, NHS organisations and policy makers where improvements need to be made. And they’ve made good use of the 2019 audit to improve care in some important areas:
• 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. The Parkinson’s Excellence Network has invested time and energy in tackling this issue since the 2019 audit, with more than 40 Parkinson’s services involved in improvement work.
• Better options for different types of contact, including remote consultations.
• Advice on the benefits of physical activity has improved, with more support for people with Parkinson’s to get active.
• The induction for new therapists has improved, meaning that they are able to provide better care for people with
Parkinson’s. This was also a national priority for the Excellence Network following the 2019 audit.
The 2022 audit reported on the care provided to 9,760 people with the condition during a five month data collection 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 Reported Experience Measure (PREM) questionnaire.
The audit is a fundamental pillar of the Excellence Network, which is supported, funded and facilitated by Parkinson’s UK, and it helps healthcare professionals to better support people with the condition.
Dr Rowan Wathes, Associate Director at Parkinson’s UK and lead of the Parkinson’s Excellence Network, 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.”
‘Can’t Wait’ campaign
The audit highlights the challenges in the healthcare workforce for people with Parkinson’s, and this is a key area of concern and campaigning for Parkinson’s UK.
Last year Parkinson’s UK launched its Can’t Wait campaign to highlight how severe NHS staff shortages are impacting Parkinson’s care in England. The charity then welcomed the UK Government’s pledge in its Autumn Statement to draw up an NHS workforce plan for England. However, it has raised fears that months on from the Chancellor committing to a plan, people with Parkinson’s still haven’t been consulted.
Juliet Tizzard, Director of External Relations at Parkinson’s UK, said: “Parkinson’s healthcare professionals are working tirelessly to give the best care they can to people with Parkinson’s. But they are spread too thinly. We must take the opportunity across the UK to invest in the Parkinson’s health workforce to enable people with Parkinson’s to live well with this condition and stay out of hospital.”