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Falling short - people with Parkinson’s still being let down

Specialist consultation

A survey of thousands of neurology patients, including hundreds of people with Parkinson’s, has revealed that services to diagnose, treat and provide on-going care are failing people across England.

The Neurological Alliance, of which Parkinson’s UK is a member, is calling for neurology to be prioritised within the NHS, and for opportunities to improve the system to be seized and implemented.

What does the survey show?

It is unacceptable that people with Parkinson’s are forced to wait months, or in some cases years, to receive a diagnosis.

Analysis of the new survey data shows that patient experience in every area – including the time taken to receive a diagnosis, access to specialists, and on-going care and support – has significantly deteriorated in the last two years.

Results from the survey confirmed examples of poor patient experience including:

  • 42% of patients saw their GP five times or more before seeing a neurological specialist – this is an increase from 31.5% in 2014.
  • Patients who feel involved in making choices about health services to at least some extent dropped to 63% in 2016 from 71% in 2014.
  • Only 56% of patients feel their health and care professionals work well together at least some of the time, compared to 67% in 2014.

Mick's story

Mick has Parkinson’s and shared his experience with us. He explains: “Out of the blue I had a suspected stroke and was rushed to hospital. After testing, the doctors said it wasn’t a stroke, but told me I needed to see a neurologist.

"From that moment I started worrying. I know some neurological conditions can be terminal, and I had no idea if mine was or not. My stress levels went through the roof. I couldn’t sit still and felt very emotional. I literally barely slept from July to September. I never knew stress could impact me in this way. 

"I went to the doctor to ask about when I’d get a diagnosis, he told me he couldn’t do anything to speed up the process. I was put on pills for my anxiety – my wife said it was like living with a different person.

"By September 2016 I’d waited 3 months for news. I was so ill with anxiety that one night I thought I was having a heart attack and was rushed to hospital. It was horrendous. At this point we decided we couldn’t wait any longer and paid to get diagnosed privately”

Patient concerns

Parkinson’s UK believes it is vital that NHS England invests in neurology to support the millions of people with neurological conditions

Morgan Vine, Policy and Campaigns Adviser at Parkinson’s UK said: “The findings of this report are deeply concerning. It is absolutely unacceptable that people with Parkinson’s are forced to wait months, or in some cases years, to receive a diagnosis. During that time they will not be receiving medication to stabilise their condition, or support from patient organisations or peers.

"Parkinson’s UK hears from numerous people who have had to visit their GPs multiple times before being referred to a neurological specialist. Then, once referred, people with Parkinson’s can wait months or years to receive a diagnosis, with many resorting to paying privately. 

"Parkinson’s UK believes it is vital that NHS England invests in neurology to support the millions of people with neurological conditions.

"It’s essential that everyone with Parkinson’s has access to a speedy diagnosis, detailed care planning and coordination of care. They should be enabled to manage their condition and provided with the support needed to maintain a positive life."

Read the report and find out more about the results on the Neurological Alliance website.