HIV Outcomes’ reaction to the INI Report on Towards a Common European Action on Care

On 22 June, the European Parliament adopted the INI Report on Towards a Common European Action on Care.  In the report, MEPs call for bold reforms in long-term care (LTC) to ensure access to quality care services for those in need, whilst those working in care benefit from better conditions. The European Commission is preparing a European Care Strategy due in Q4 2022 and two proposals for a Council Recommendation are envisaged, one on LTC.

HIV Outcomes welcomes the INI Report and attention to the quality of life of those in need of care. It is important that the European Care Strategy protects and improves wellbeing for every person in need of care by ensuring quality LTC services. This should include people living with long-term conditions such as HIV, who self-report poorer wellbeing than the general population and greater care dependency.

The Report rightly calls for the implementation of quality indicators to guide care delivery effectively. Health-related quality of life (HRQoL) is an umbrella indicator to capture with self-assessment tools, the multi-dimensional issues affecting the wellbeing of those in care (i.e., mental, physical, social, etc). Traditionally used in health technology assessment, HRQoL is being increasingly adopted in clinical settings as a measurable and implementable indicator.

We also commend the Report for recognising the importance of achieving an integrated approach to care with attention to people’s physical, mental, psychological and social needs. Integrated models guided by HRQoL and based on multi-disciplinary cooperation between care and healthcare practitioners have proven best positioned to meet the needs of those in care.

Lastly, we condemn every form of discrimination and stigma against care workers and welcome measures to combat this. Meanwhile, attention should be drawn to the stigma and discrimination often reported against people living with HIV in care settings (or with other stigmatised conditions). With the increase in life expectancy, the ageing population living with HIV is larger than ever and at risk of triple stigma from ageism, HIV and anti-LGTBQ prejudice; hence signaling the need to educate care workers.

Altogether, we recommend that in line with the Report, the European Care Strategy calls for:

1. the implementation of HRQoL as a quality indicator to guide care delivery and improve wellbeing for those in need of care;
2. the adoption of integrated models of care guided by HRQoL, as best positioned to meet the physical, social, mental and psychological needs of those in need of care;
3. measures to combat stigma and discrimination towards care workers and people in care living with HIVor other stigmatised conditions.

HIV Outcomes reiterates the support for the Strategy and the Report and looks forward to continuing this collaboration. For more information, please read our input to the Call for Evidence on the European Care Strategy or contact us at secretariat@hivoutcomes.eu