• 19Sep

    53% of people with long term conditions not offered information or support when diagnosed

    The Institute for Public Policy Research (IPPR) has published a new report: Patients in control: why people with long term conditions must be empowered.

    The report presents the results of a survey (facilitated by Health Unlocked) of over 2,500 people with long term conditions about what sort of control they want over their care and what sort of support they want.

    53% of respondents said they were not offered any support or information when they were diagnosed. Survey responses showed that people who were offered the least information and support at the time of their diagnosis were least likely to be satisfied with the day-to-day management of their health condition.

    77% of respondents said that more of their healthcare could and should be managed independently at home – but a lack of support and information was holding them back from doing so.

    The survey asked where patients got their health information from, with the most used sources being search engines, NHS Choices and voluntary organisations. 53% reported they ‘often’ or ‘very often’ search online for information about their condition (however, the report caveats that this may be sample biased).

    The report  state it should be ‘guaranteed’ that everyone diagnosed with a long-term condition – at the point of diagnosis and regularly thereafter – is offered information, advice and coaching about how best to self-manage their condition’.

    The report recommends that NICE should develop patient-friendly equivalents of each clinical guidance note relating to long-term conditions, including condition-specific checklists for patients to use to ensure that they are getting the services they need.

    Delivering this would, the report argues, help patients to be more discerning about information they receive through other sources, such as the sometimes overly-simplistic health messaging they may see in the media or from other sources. It would also help patients to critically evaluate – and, where necessary, challenge – the healthcare advice they receive.

    The report also discusses the survey findings on what practical steps would increase patient empowerment:

    • Named individuals who can be contacted directly about any aspect of their care: 75 per cent said this would be useful
    • Good data and information about their medical conditions – including access to medical records (70 per cent said this would be useful) and coaching on how to manage their condition (58 per cent)
    • Peer support from people with similar conditions: 61 per cent said this would be useful
    • Healthcare plans and personal healthcare budgets, where people want them: 56 per cent said a care plan would be useful, but only 35 per cent said that a personal health budget would be
    • Enabling technology: 31 per cent said devices or sensors would be useful, and 24 per cent said that condition-specific apps would be useful.

    The full report can be read here.