Executive summary During February and March 2018, NHS England surveyed Patient and Public Voice (PPV) Partners and chairs of committees, working groups and forums with PPV Partner members about their views and experiences. This report summarises the responses to the two surveys and actions taken or proposed in response. ‘Free text’ responses from both surveys are presented at appendices two and three, with an explanatory statement at appendix one. In appendix four, some of the headline results from the 2017/18 PPV Partner survey are compared with those of the 2016/17 survey. A total of 58 PPV Partner surveys were completed and received during the review period, with 57 completed online and one easy read printed survey. A total of 32 chair surveys were completed and returned, all of which were submitted online. The key themes identified from responses from PPV Partners are that: Most PPV Partners (45 respondents (78%)) believe that NHS England values patient and public involvement ‘to some or a great extent’, however, in free text comments, many raise concerns about the level of influence that they have or that pubic participation more widely has on decision-making. Some respondents are concerned about the impact of financial constraints on taking forward the outcomes of public participation. It is clear that many PPV Partners are very committed to public participation in the NHS, and to their involvement in NHS England’s work, however, experiences are mixed, and there remain some ongoing challenges, for example around processing expenses and communication. Several free text comments also share views about the level of commitment to public participation amongst NHS professionals, with some very positive feedback
“The quality assurance aspects of all areas of NHS England should be made publicly available.” “As previously mentioned a more professional approach to public / patient and carer research where deep understanding of behaviours, values and issues could significantly improve outcomes and often reduce costs e.g. […].” “Use national charities as they have resources and people with disease registered.” “I think they could try harder to get the views of people who have difficulty in verbal communication and written communication. Reasonable adjustments.” Question 12. How many NHS England committees or groups are you currently a part of? Response Total Percentage of responses Zero 3 5% One 33 57% Two 9 16% Three 6 10% Four 2 3% Five 0 0% Six or more 2 3% Prefer not to say 3 5% Not answered 0 0% Total 58 100% Question 13. Are you currently subscribed to InTouch? Response Total Percentage of responses Yes 24 41% No 32 55% Prefer not to say 1 2% Not answered 1 2% Total 58 100% Question 14. If you are not currently subscribed to InTouch, what has stopped you from subscribing? Response Total Percentage of responses Unaware of existence of InTouch 22 67% Only learned about it recently/ at the interview 3 9% New in post 2 6% Other 6 18%
Total 33 100% “Not heard of it.” “No idea what it is.” “?” “Did not know about it.” “Not aware of it.” “I have never heard of it.” “Don't know what it is.” “I don't know what this again. Given that I was out of the loop on things like induction process and welcome packs, I suspect I have missed out on this as well.” “I don't know what it is.” “I am unaware about this.” “Have no idea what it is.” “Never heard of it.” “I don't know what InTouch is.” “Was not aware of its existence.” “Never heard of InTouch?” “Never heard of it or been asked to subscribe to my knowledge.” “Not previously aware.” “Never heard of it.” “I was unaware of it.” “Did not know about it.” “I've never heard of it.” “I did not know about it.” “Only learnt about it yesterday.”
“Was not aware of its existence until recently.” “Was told about it at interview but not received any details about it subsequently.” “New in post.” “I must have missed the opportunity to join it - sorry!” “Suffering from information overload.” “New in post.” “I subscribe to many NHS and external items about the NHS. I don't believe I subscribe to InTouch, but it may be one of many I do.” “I don't recall coming across this except perhaps in print.” “I find these questions frustrating as I continue to get communications but I feel these are only one way at the moment - from NHS England yet only trivial supposed acknowledgement is given for me to communicate back and then I feel I'm just a tick box communication rather than genuine engagement and influence NHS England committees and groups: hmmm I can't be involved if you don't seem to allow me to be.” “I have just subscribed.” Question 15. If you are subscribed to InTouch, what do you think of it? Response Total Percentage of responses Helpful/ Good/ Useful 11 35% Haven’t used it 7 23% Informative/ Information 6 19% Not very relevant 1 3% Other 6 19% Total 31 100% Note: this table shows the categorisation of free text responses. “Helpful.” “Helpful to find out about events e.g. Expo18.” “Good.” “A good vehicle for updating me.” “Interesting and has some useful material I've not come across elsewhere.”
“I am a fan and think it is useful.” “Very useful.” “It's useful as an update vehicle and keeps me abreast of developments and opportunities.” “Very useful.” “Very useful and is a compulsory read.” “Somewhat interesting and useful for involvement opportunities.” “Interesting and informative but pretty dull!” “It does not really cover my very niche area, but generally quite informative.” “Generally quite informative but is limited in its scope due to the number of items it can focus on in each issue.” “Highly informative in a useful and pragmatic sense.” “Informative, timely and easy to navigate.” “It has various opportunities for PPV [Patient and Public Voice] and quality information.” “N/A.” [Five (5) responses]. “Don't know what it is.” “New in post.” “Will let you know.” “See above - what is the purpose - two way conversations and supporting each other or just being told what's happening?” “Clunky and not easy to get what I need from it.” “It is quite light on substance - very much a marketing tool rather than an information provision.” “I must admit I don't give it much more than a quick glance, but your question has made me think I need to give it more attention.” “Too passive, people will not react to anything if they cannot see a benefit to be gained.”