Summary by Aziza Sallam, postdoctoral research associate<\/p>\n\n\n\n
The meeting reflected strong engagement, thoughtful contributions from PPI members, and a clear emphasis on making the research inclusive, practical, and really reflective of people\u2019s lived experiences with MLTC.<\/p>\n\n\n\n
\nDefining and implementing \u2018Good Care\u2019<\/strong><\/h2>\n<\/blockquote>\n\n\n\n
There was discussion around the need to define what \u201cgood care\u201d looks like, particularly for people with MLTC. Participants highlighted the difficulty of translating this concept into practice when the system and culture are not supportive. Systemic and cultural changes were seen as necessary to enable healthcare professionals to deliver personalised care effectively.<\/p>\n\n\n\n
1. Preference for personalised and remote care:<\/strong><\/h2>\n\n\n\n
Participants discussed the importance of consultations being tailored to individual needs. While digital options (like video calls) were seen as potentially helpful and more efficient, concerns were raised about the loss of personalisation and the risk of errors. One participant shared a troubling experience of medical errors and a loss of trust in their GP, reinforcing the need for safer, more reliable systems.<\/p>\n\n\n\n
2. Concerns about digital exclusion<\/strong><\/h2>\n\n\n\n
Digital access was recognised as a growing necessity in healthcare, yet many people, especially older adults with complex conditions, are digitally excluded. There was a strong call to ensure research and service design consider who is being excluded and how to reach them. AI and algorithms were seen as promising but potentially problematic if they generalise care and overlook individual needs.<\/p>\n\n\n\n
3. Frustration with referral loops<\/strong><\/h2>\n\n\n\n
Several participants shared experiences of being bounced between GPs and specialists, particularly in cases involving rare or complex conditions. This back-and-forth was described as inefficient and emotionally draining, with some professionals preferring more traditional models of care.<\/p>\n\n\n\n
4. Systemic bottlenecks in digital healthcare<\/strong><\/h2>\n\n\n\n
Although digital systems are intended to improve speed, they often cause delays. A participant shared how a simple menopause-related query took months due to bureaucratic processes. There were concerns that current systems, while fast in theory, often fail in practice.<\/p>\n\n\n\n
5. Risk aversion among clinicians<\/strong><\/h2>\n\n\n\n
Healthcare professionals, especially younger ones, were reported to be increasingly risk-averse, often avoiding procedures out of fear of litigation or professional consequences. This defensive practice can lead to unnecessary referrals and investigations, increasing pressure on the system.<\/p>\n\n\n\n
6. Importance of culture and communication in care teams<\/strong><\/h2>\n\n\n\n
One participant shared a positive example from a practice serving homeless people, where a strong culture of open communication, learning from mistakes, and shared values led to better care. Regular meetings, inclusive decision-making, and clear mission statements helped foster a proactive and supportive team environment.<\/p>\n\n\n\n
PPI feedback during this meeting<\/h2>\n\n\n\n
\n1. Health literacy :<\/strong><\/p>\n<\/blockquote>\n\n\n\n
o Many people with MLTC lack understanding of their medications and treatment.<\/p>\n\n\n\n
o There\u2019s a need for better explanation by healthcare professionals to avoid adverse reactions and promote self-management.<\/p>\n\n\n\n
o Emphasis should also be placed on lifestyle care (e.g. rehab, nutrition, and exercise).<\/p>\n\n\n\n
\n2. Inclusion and equity:<\/strong><\/p>\n<\/blockquote>\n\n\n\n
o Asked how underrepresented groups and ethnic minorities will be included.<\/p>\n\n\n\n
o Jo and Christine explained that an Equality Impact Assessment will be conducted on the upcoming prioritisation survey to ensure inclusivity.<\/p>\n\n\n\n
o A summer PPI meeting is being considered to support this work.<\/p>\n\n\n\n
\n3. Private sector integration:<\/strong><\/p>\n<\/blockquote>\n\n\n\n
o Questions were raised about whether private care is included in the models of coordinated care.<\/p>\n\n\n\n
o The team acknowledged growing interaction between NHS and private sectors and agreed it must be considered, though it presents practical challenges.<\/p>\n\n\n\n
\n4. Health records and data sharing:<\/strong><\/p>\n<\/blockquote>\n\n\n\n
o There are serious issues with health record sharing across NHS regions and between departments.<\/p>\n\n\n\n
o Lack of access to unified records causes duplication and patient frustration.<\/p>\n\n\n\n
o Interestingly, private providers seem to manage records access more efficiently, especially when NHS referrals are involved.<\/p>\n\n\n\n
Next steps<\/strong><\/h2>\n\n\n\n
\u2022 The scoping review findings will be presented in a future session.<\/p>\n\n\n\n
\u2022 The team will continue to include and expand on PPI input.<\/p>\n\n\n\n
\u2022 Additional PPI sessions may be organised, particularly to support the Equality Impact Assessment.<\/p>\n","protected":false},"excerpt":{"rendered":"
Summary by Aziza Sallam, postdoctoral research associate Overview The meeting reflected strong engagement, thoughtful contributions from PPI members, and a clear emphasis on making the research inclusive, practical, and really reflective of people\u2019s lived experiences with MLTC. Defining and implementing \u2018Good Care\u2019 There was discussion around the need to define what \u201cgood care\u201d looks like, […]<\/p>\n","protected":false},"author":2703,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1],"tags":[],"acf":[],"yoast_head":"\n
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