How we're performing

We're dedicated to providing the best services and customer care to people affected by Parkinson's.


Highlights from our helpline user survey 2016 (241 respondents):

  • 95% of survey respondents rated the service as either excellent or good.
  • 97% would recommend the helpline to others.
  • In total, 96% of respondents got the information and advice that they needed.

Percentage of calls answered within 5 rings:

YEAR 2016 2015 2014 2013 2012
Target 80% 80% 80% 80% 80%
Actual 81% 79.2% 82% 81.5% 81%



In 2016, 727,710 information resources were ordered or downloaded from our website.

Percentage of users who found our resources useful and helped them manage life with the condition:

YEAR 2016 2015 2014 2013 2012
Target 95% 95% 95% 95% 95%
Actual 96% 97% 98% 98% 94%

Parkinson's Local Adviser service

Across the UK in 2015, over 12,500 people affected by Parkinson's used our Parkinson's Local Adviser service.

Highlights from our service user survey 2016 (285 respondents):

  • 97% felt the adviser was very friendly and polite.
  • 98% would recommend the service to others affected by Parkinson's.
  • 91% of respondents said that the information or support provided helped them to make choices that improved their life in some way.
  • Generally there were no recorded problems in accessing the service.

Before September 2015, Parkinson's local advisers were called information and support workers.


Self-management programme

Across the UK, 447 people attended 40 groups in 2016 and the overall attendance level was 91%. Of the 409 people who provided feedback about the programme:

  • 97% rated the self-management programme as very good or good.
  • 99% found it helpful to talk to others about Parkinson's in this way.


Peer support service

In 2016, 90 people used the Parkinson's peer support service.

Highlights from our peer support service user survey 2016 (32 respondents):

  • 81% felt that the service helped them.
  • 84% said the support they received made them feel more positive about their current situation.
  • 87% rated the service as excellent or good.
  • 90% would recommend the service to others


Customer care

92% of our correspondence was acknowledged or responded to within 5 working days in 2015 (2015: 88%).

We measure the ratio of negative feedback we receive compared with positive feedback.

Our target is that we don't receive more than 25% of negative feedback.

Percentage of negative feedback compared to positive feedback

YEAR 2016 2015 2014 2013 2012
Target 25% 25% 25% 25% 25%
Actual 13% 9% 11% 14% 17%

Take a look at our Feedback and complaints procedure (PDF, 164KB).


You said/we did

Here are some examples of how your feedback in 2016 has made a difference and improved the way we do things for people affected by Parkinson's:

Research Support Network

Our Research Support Network rebranded - and members were heavily involved in choosing a new name and look.

We also took on a member's suggestion that we make the emails we send asking for research participants clearer by introducing new icons.

Saying thank you to local groups

A local group said they felt we could do more to show appreciation for funds raised, beyond a letter from our CEO.

Our Senior Leadership Team launched a 'ring up and say thank you' programme, where groups receive personal calls to acknowledge cheques.

Brain bank donations

We heard from people that they couldn't donate their loved ones' brains to research, according to their wishes, as they didn't know they needed to keep their body cool after death.

So we:

  • produced a new information sheet (pdf, 1.4MB) explaining, step-by-step, the process that families and professionals need to follow for the best chance of a successful donation. This was sent to all registered donors in late 2015 and is now included in the pack sent to all new donors
  • updated our Brain Bank information booklet (pdf, 1.4MB), which is given to anyone considering becoming a donor

Creative writing

You told us we could do more to support and promote the creative writing of people affected by Parkinson's.

Throughout 2016 we worked with creative writers affected by Parkinson's to develop a creative writing toolkit, which aims to support and showcase this outlet.

The Parkinson - 'Getting to know...' interviews

Some people affected by Parkinson's on our Editorial Board told us they'd heard about local advisers and other staff who might support them but didn't understand what they can offer.

We introduced the new 'Getting to know...' interviews in The Parkinson magazine to help encourage deeper understanding of the roles of different Parkinson's UK staff and others who can offer support.