Taking on board the views of users: the PACE User Forum

Taking on board the views of users: the PACE User Forum

The PACE project aims to involve users meaningfully in order to ensure that the work of the project corresponds to their needs and expectations. Therefore, PACE set up a ‘User Forum’ consisting of informal carer’s and representatives from AGE Platform Europe and Alzheimer Europe to collect feedback on health and social care.  Participants, represent a variety of countries and professional profiles, and are committed to making the access to palliative care in long-term care services a reality to ensure the dignity of older people.

The discussions of the ‘User Forum’ are not limited to specific topics, but consist of a structured exchange of views between members and representatives of PACE. These exchanges are beneficial for both sides as members of the forum receive first-hand information about the project and the PACE partners are able to get feedback on the aspects of the project that are of most importance to the target group thus allowing a change in approach if required.

The objectives of the ‘User Forum’ are:

To highlight the aspects of the project that are essential regarding the quality of care, dignity and social needs of older people who need palliative care, in order to orientate the development of PACE.

To reflect on the policy areas that are relevant and ensure access to comprehensive and high quality palliative care and recognise the policy changes that are required to achieve this goal; these reflections will contribute to the final Policy Recommendations of the project.

The 1st PACE User Forum was organised by AGE Platform Europe in September 2015 in Brussels. The forum comprised of the following users and experts:

  • Alvy Dercks Tai (The Netherlands)
  • Sture Eriksson (Sweden)
  • Liz Lloyd (United Kingdom)
  • Elizabeth Sclater (United Kingdom)
  • Sabine Henry (Belgium)
  • Hilary Doxford (United Kingdom)
  • Peter Paniccia (United Kingdom)
  • Bozidar Voljc (chair, Slovenia)


Attendees included PACE coordinator Lieve Van den Block, Katherine Froggatt from Lancaster University and representatives of AGE Platform Europe and Alzheimer Europe.

This first forum reflected on the need to break the traditional image of palliative care as an intervention limited to the end of life. It also highlighted the societal stigma and prejudices attached to accessing palliative care.  A lack of services and a misperception that palliative care relates specifically to end of life has resulted in a lack of access to services for people with palliative care needs. Members of the forum pointed out that changes were needed to the way in which health and social care professionals are trained and the way care systems are organised. Finally, they also highlighted the need to consider the social environment of the care recipients and stressed the importance of the integration of palliative care in to all policy documents with the aim of ensuring age-friendly environments for active ageing.

The discussion allowed the introduction of PACE to the forum members and enabled an exploration of the social and ethical considerations users find important as well as the relevant policy areas to consider. This provided the foundation for the agenda for the intermediate PACE Policy Conference which will take place on 15th June 2016 in Brussels. Liz Lloyd will present the outcomes of the forum at this meeting.

The discussion of the next ‘User Forum’, will be organised in spring 2017, and will build on the outcomes of this first meeting and the Policy Conference.

For further information, do not hesitate to get in touch with Borja Arrue, Project and Policy Officer at AGE Platform Europe, borja.arrue@age-platform.eu

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