Highlights from our helpline user survey 2017 (92 respondents):
- 96.3% of survey respondents rated the service as either excellent or good.
- 97.6% would recommend the helpline to others.
- In total, 96.4% of respondents got the information and advice that they needed.
Percentage of calls answered within 5 rings:
In 2017, 478,455 information resources were ordered from our website. The information pages received, on average, 220,000 unique views per month. Since we updated our website, in April, these pages have received 1.99 million unique views.
Percentage of users who found our resources useful and helped them manage life with the condition:
Across the UK in 2017, over 12,500 people affected by Parkinson's used our Parkinson's Local Adviser service.
Highlights from our service user survey 2017 (273 respondents):
- 98.4% felt the adviser was very friendly and polite.
- 97.1% would recommend the service to others affected by Parkinson's.
- 92% of respondents said that the information or support provided helped them to make choices that improved their life in some way.
Across the UK, 369 people attended 33 groups in 2017 and the overall attendance level was 90%. Of the 224 people who provided feedback about the programme:
- 96% rated the self-management programme as excellent or good.
- 99% found it helpful to talk to others about Parkinson's in this way.
In 2017, 84 people used the Parkinson's peer support service.
Highlights from our peer support service user survey 2017 (25 respondents):
- 91.3% felt that the service helped them.
- 83.4% said the support they received made them feel more positive about their current situation.
- 95.8% rated the service as excellent or good.
- 95.8% would recommend the service to others
94% of our correspondence was acknowledged or responded to within 5 working days in 2017 (2016: 92%).
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
Take a look at our feedback and complaints procedure (PDF, 164KB).
- Annual report on customer care and user feedback 2018 (PDF, 915KB)
- Annual report on customer care and user feedback 2017 (PDF, 944KB)
- Annual report on customer care and user feedback 2016 (PDF, 615KB)
- Annual report on customer care and user feedback 2015 (PDF, 329KB)
- Annual report on customer care and user feedback 2014 (PDF, 323KB)
- Annual report on customer care and user feedback 2013 (PDF, 302KB)
- Annual report on customer care and user feedback 2012 (PDF, 498KB)
You said/we did
Here are some examples of how your feedback in 2018 has made a difference and improved the way we do things for people affected by Parkinson's:
You told us that you don’t relate to the word ‘carer’.
We are now using a range of language with a greater focus on relationships rather than people’s role. When referring to individuals close to people with Parkinson’s, we use ‘family, friends and carers’ and never ‘carer’ alone.
Research is of interest to you but with just one national Research Support Network event a year, many of you expressed a wish to have events closer to home.
In 2018 we ran 3 regional Research Support Network conferences. And now we are focussing on supporting regional teams to organise research events in their areas - this will lead to more regional research events all around the UK.
You told us it would be positive to work more closely with pharmaceutical companies.
We reached out to the 5000 Research Support Network members, most of whom are affected by Parkinson’s, to ask for their views on the pharmaceutical industry. You told us Parkinson’s UK should work collaboratively with pharmaceutical companies to develop new treatments.
So we started our first projects supporting people affected by Parkinson’s and researchers from pharmaceutical companies to work together, helping shape Parkinson’s research and ensure it is focused on the needs of those with the condition. So far, we have supported patient and public involvement in 4 different projects with pharma and we will continue to build on this in 2019.
Those with young-onset Parkinson’s expressed a need for tailored resources.
Working through the Younger Parkinson’s Alliance, we have produced a new sign-posting resource specifically for younger people with the condition and also a best practice resource for health and social care professionals on treatment options and specific psycho-social needs.
You said you’d like to see the email you’ve sent to your MP when you write to them about one of our campaigns.
We changed our emails to make sure they included what email campaigners had sent to their MP.
You told us what was most important to you to help us develop the new strategy for Parkinson’s 2020-2024.
As we launch the new strategy in 2019, we have ensured that awareness raising, better treatments and improved health services remain priorities. Based on further comments, we’re paying specific attention to mental health support and the needs of those living with the with more advanced Parkinson’s symptoms.