'How to be heard' - public engagement with the NHS: Qualitative research

NHS Change The way in which decisions are still perceived to be made within the NHS – unchanging process, patriarchal relationship and questionable ability to listen and act – generates a spectrum of dissatisfaction, frustration and anger amongst patients. The extent to which respondents wanted to become involved in decision-making was influenced by their level of experience of NHS services and their exposure to NHS changes. Patients had more experience of NHS services and change and were, therefore, more willing to become involved in decision-making than were ‘well’ respondents. Amongst the ‘well’, interest in becoming involved was influenced by attitude, with C2DE groups less interested in the NHS as a ‘social concept’ and therefore less altruistic in outlook than BC1 respondents. All were interested in having more involvement in their own care, with patients with long-term conditions the most motivated to become involved in decisions about care. Patients with experience of acute services were the most vocal because of their comparatively dramatic experiences and this segment was most actively interested in becoming involved in planning services. Channels for involvement Currently, patients typically give negative feedback/complaints or informal positive feedback (thank you cards to NHS individuals or teams) but not official positive feedback about NHS services. The ‘Well’ segments do not give any feedback to the NHS, either positive or negative. There was very little awareness of existing channels for interacting with the NHS. All believed that, if they wished to complain about – or comment upon – their NHS care, they would seek information about how to do this directly from local healthcare sources. Overall, it was apparent that respondents simply did not know how to start a dialogue with the NHS or find out how to do so – although there was an expectation that patient feedback options would be available if required. PALs, LINks and NHS Choices as channels for interaction with the NHS were not familiar to a majority of respondents: • PALs was seen as a channel for those with major issues and was seen as similar to an Ombudsman service. It was also perceived to be run on behalf of the NHS, not patients • LINks was seen to be representing patients’ views and lobbying in relation to local NHS issues. However, many were skeptical that LINks could effect genuine change • NHS Choices was seen as a useful source of information about the quality of healthcare. However, online delivery clearly alienated non-internet users (older and C2DE in particular). There is a lack of knowledge about channels for feedback and involvement which needs to be addressed. However, this is not simply an ‘information-only’, awareness-raising exercise. The positioning needs to reflect a changing NHS. In order to encourage patients to interact with the NHS, How to be Heard must communicate: • that the NHS welcomes patient involvement, both positive and negative feedback • stress that all users of NHS services - regardless of background or experience - can contribute • encouragement for patients to participate in a process of improvement. How to be Heard content All respondents felt that having their opinions and choices set out in a single document would be likely to encourage people to play a more active part in both local NHS services provision and their own care. Reactions to the contents page were positive in that it was seen as offering clear headings and was easy to understand. Typically, respondents focused on sections that seemed relevant to their own life circumstances. To encourage NHS users to participate in decisions about their own care and decisions about planning, the communication needs to preface the ‘how to’ information by explaining: • Why patients involvement is important to the NHS • What can be contributed: i.e. both positive and negative • How their contribution will be actioned and valued by the NHS. How to be Heard tone and messaging In relation to positioning and messaging, the persuasive tone had more impact and appeal amongst a majority of the sample. This approach, it was felt, was friendly, engaging and relevant to a wide range of the public – giving the impression that the NHS is genuinely interested in soliciting the news of ordinary people. Conversely, the informative tone and language reflects an old-style NHS which is informing patients of their rights, but does not wish to engage with them. The paragraph style was the most appropriate length of message produced and produced the most favourable response from a majority of respondents – giving enough detail to stimulate interest and action without offering unnecessary detail or off-putting, technical, language. The paragraph style in the persuasive tone has a strong conversational approach which combines a commonsense tone with some straightforward, directive, statements about the potential benefits of How to be Heard. For future consideration, the use of ‘right?’ was considered flippant and colloquial and takes away from the overall success of this tone and style. Channels to promote and disseminate How to be Heard Patients had little doubt that they would be able to access How to be Heard information during one of their visits to NHS services. However, promoting How to be Heard through a broader set of channels was felt necessary for ‘well’ respondents, so that, in future, they are aware of the decisions they can make regarding their own care and how to become involved in decision-making. It was felt that the How to be Heard material should be made available through: • traditional NHS channels (such as GP surgeries and hospital waiting areas) • more widely accessed sources such as pharmacies, post offices, supermarkets and libraries. In terms of promotion, respondents typically supported a local, rather than national, approach, using local media such as radio and newspaper.