Person-centred care Resources

Lymphoedema is a chronic condition that can lead to pain, reduced mobility, and significant emotional and psychosocial burden. While standardised patient-reported outcome measures capture physical and psychological impacts, they may overlook important aspects of the lived experience. This service evaluation aimed to explore patient experiences of lymphoedema at first contact with the service by analysing open-text responses from LYMPROM© submitted to a single lymphoedema service, and to identify concerns not captured by fixed-response items. A retrospective thematic analysis was conducted on 229 anonymised open-text responses submitted via LYMPROM© for patients newly referred to the Swansea Bay University Health Board (SBUHB) lymphoedema service between November 2020 and December 2022. Data were analysed using Braun and Clarke’s six-phase framework, with coding and theme development undertaken collaboratively by three researchers to enhance rigour. Four overarching themes were identified: the burden of multiple comorbidities, disrupted sleep often linked to pain and discomfort, the emotional toll of lymphoedema, and behaviour changes related to social withdrawal and diminished confidence. Patient narratives revealed experiences not easily captured through structured assessment alone. The findings support the integration of narrative data to inform more holistic, person-centred care.

Several crucial documents have identified the need for integrated care to meet patient requirements in the current financial climate, developed from the concepts of self-care and joining up care to improve health outcomes. These include the Five Year Forward View (2014), Next Steps on the Five Year Forward View (2017), NHS Long Term Plan (2019) and now the introduction of the Health and Care Act (2022) — all of which provide a contextualised approach to care. Integrated care is aimed at the way that organisations work together to support self-care (which incorporates the principles of holistic care considering physical, emotional, social, spirtual and ecomonc health [Mills, 2017]), with a commitment to improve patient outcomes by avoiding confusion and repetition. It  enhances comprehensive care planning by listening to patients — perhaps best summed up by the phrase, ‘No decision about me, without me’ (Department of Health [DH], 2012).

Storytelling is the act of telling or writing stories, or narratives. Typically, stories are told for entertainment, for informational or educational purposes. Telling stories and storymaking is integral to our human consciousness and lived experience

Here, Ellie Lindsay OBE explores why, with the increased use of virtual technology in health care, good communication skills are more vital than ever to ensure person-centred, holistic care.

The evolution of technology and electronic devices, such as smart phones, has greatly influenced the way we communicate today, improving the speed and ease of reaching out to others. But, the downside of the speed of, for example, a text messaging service, may be that individuals are no longer taking the time to converse in person and to be truly present — in mind and body.