Living Healthy Lives: Exploring effects of growing older with cerebral palsy and use of healthcare services across the life course (ALTHEA) Consensus Meeting
19 May 2023 10am – 4pm, Orchard Hotel, University of Nottingham
Background to project
The NIHR Althea project (2021-2023) aimed to explore:
a) the healthcare needs of people with CP across the life course in the UK.
b) experiences of receiving healthcare as an adult with CP.
The project involved the following activities:
- An online survey disseminated via multiple CP networks and organisations. 395 people with different types of CP responded, across a wide age range from 18 through to 65 and over.
- A qualitative life course interview conducted in person or online (including email, Instant Messenger) with 26 people with different types of CP, again across a wide age range.
- Regular meetings with a PPI group (advisory group) of men and women with relevant professional and personal expertise of living with CP. They have had significant input into the project from conception to completion, contributing to the research design, analysis, the identification of key findings and development of recommendations (generated from the data).
- Bring together a range of stakeholders to discuss and agree on the recommendations - a consensus event.
Consensus Event
Photographer: Jon Legge
The consensus event took place at the Orchard Hotel, University of Nottingham. It brought together health care professionals, policymakers, people with CP and families to discuss the project findings and the three key recommendations generated by the Althea study .
The different stakeholders invited to the event were sent the list of recommendations and asked to select 3 key points of action, prior to the event. During the event, the stakeholders were divided into three groups and encouraged to discuss their chosen points of action with each other. Everyone was encouraged to share their views, but also to listen to each other’s personal or professional views on the recommendations from the ALTHEA Study, and which ones could really make a positive to the health and wellbeing of adults with cerebral palsy.
Each group had a facilitator to ensure everyone had space to contribute to the discussion equally, and was listened to. Each group also nominated a notetaker who briefly presented the action points discussed by each small group to the whole group at the end of the day.
Three core recommendations generated by the two years ALTHEA study are:
- Set up specialist Clinical CP service in every region of the country available to people with CP ages 18 and above, with a multidisciplinary team of HCPs who can support and help manage their fluctuating physiological, mental and psychological health needs across the life course. As part of establishing the clinics also establish a clinical speciality in CP across the life course.
- Changes to facilities and healthcare environments across clinical and primary care settings are needed to ensure people with CP and other disabled people receive effective and dignified care. Such adaptations will be of benefit to a range of disabled people using healthcare.
- Education and training is central to ensuring all those working across healthcare treat people with CP appropriately and with an understanding of both their clinical needs and the challenges they face as disabled people in society. Changes are required across medical training, workplace training and continuous professional training to ensure those working in healthcare provide effective care and support for people with CP.