People with Parkinson’s can’t wait any longer

We have heard horrifying stories from families who have struggled to get support from health services. And also from health professionals about the pressures they’re under. 

Can’t Wait

Gary was diagnosed with Parkinson’s 10 years ago. In the last 2 years he hasn’t been able to get an appointment with his neurologist, and has struggled to see his GP:

"I felt that I had no one to reach out to. It’s left me feeling vulnerable and not confident with the healthcare system at all."

Gary, a person with Parkinson's

Our research shows NHS staffing levels have been so low that some people are waiting years to be seen by health professionals. This includes a shortfall of approximately 100 Parkinson’s specialist nurses across the UK.

• A European Academy of Neurology survey found the UK was ranked 44 out of 45 European countries for the number of neurologists per population, with only Ireland having fewer.
• The Royal College of Physicians found that 48% of care of the elderly consultants in England are set to retire within the next 10 years.
• In 2020, the UK was ranked 16 out of 19 of the top European countries for physiotherapists per 1,000 of the population.

Workforce data black hole

The lack of detailed data on the NHS workforce is hiding the true scale of the problem.

There is a ‘data black hole’, with the NHS’s monthly workforce statistics only giving an overview of the numbers of doctors and surgeons listed by speciality or condition. 

That’s why we are calling for the new Health Secretary, Steve Barclay, to produce a fully funded workforce strategy. An increase in the number of Parkinson’s specialists is desperately needed to improve care.

This strategy should also include the publication of detailed data on the NHS workforce, with projections of staff numbers needed to meet current and future demand.

Support for our campaign

Our Can’t Wait campaign is backed by professional bodies, including:

• Parkinson’s Disease Nurse Specialist Association (PDNSA)
• British Geriatric Society
• Royal College of Psychiatrists
• Chartered Society of Physiotherapists
• Royal College of Speech and Language Therapists
• Royal College of Occupational Therapists and
• British Psychological Society.

Sam Freeman Carney, Health Policy and Improvement Lead at Parkinson’s UK, said: 

"Our Can’t Wait campaign highlights how essential it is that people with Parkinson’s get access to proper healthcare. We have heard directly from people with the condition that not being seen by healthcare specialists is impacting their daily lives and also putting unnecessary pressure on an already overstretched NHS.

"We are calling for the UK government to grow and upskill the Parkinson’s workforce to better support people with the condition. Like others across the sector, we strongly believe there must be greater transparency by publishing detailed data on the current and future projections for the health and care workforce."

What you can do

• Visit our campaign web pages to find out more about our campaign and how you can get involved.
• Write to the health secretary to call for a fully funded workforce plan that delivers the key professionals needed to provide timely access to high-quality care for people with Parkinson’s. 
• Write to your local integrated care board asking what plans they have in place to make sure they have enough Parkinson's professionals and how they'll educate their workforce on the condition.

If you have had difficulty accessing health services, please share your story as part of our campaign.