The latest Patient and Public Interest Group (PAPIG), which continues to be held virtually, took place on 18 March and focused on patient participation and the importance of the patient voice.
Chaired by Dr Clare Elliott, Senior Scientist and Patient Engagement Lead, the first speaker of the meeting was Ruth Lang, Senior Liaison Manager, who gave an update on the recent work which has been taking place at AWTTC.
Attendees also heard from a variety of speakers including patient, Tony Esmond, who has a rare disease alkaptonuria (AKU). Tony talked about the value of being involved in the appraisal process of the All Wales Medicines Strategy Group (AWMSG) and the importance of being heard as a patient.
Tony spoke of his personal involvement in the appraisal process for nitisinone, a medicine used to treat AKU, and how he was able to share his experiences of living with AKU. Nitisinone was subsequently recommended by AWMSG for people living with this condition in Wales.
Lay member Cliff Jones, who sits on AWMSG as a voting member to represent the patient and public perspective, was the next to share his involvement. Cliff spoke passionately of his role and the importance in relaying the patient voice to the committee to ensure that their views and experiences are represented.
Next on the agenda was Dr Effi Mantzourani, a reader at the School of Pharmacy and Pharmaceutical Sciences at Cardiff University, who gave an overview on her project looking at patient understanding of unlicensed medicines.
Gail Woodland, Senior Pharmacist at AWTTC, outlined the One Wales Medicines Process which is used to ensure equitable access to medicines, not usually available in Wales, for small groups of patients. Gail highlighted the importance of individual patient and/or patient group involvement in this process. One such group that has been involved is Parkinson's UK and their Policy, Campaigns and Communication Manager for Wales, Rachel Williams, explained how she worked with AWTTC when a medicine called opicapone was assessed using the One Wales process. By speaking to people who were using this medicine, Rachel was able to collate evidence to submit to the One Wales decision-making committee (OWMAG) giving an overview of the patient experience and their quality of life. Rachel commented that this was a very positive experience for Parkinson’s UK and how pleased they were when opicapone was made available to people living in Wales in advance of England and Scotland.
The meeting then moved to another route of access to medicines called Individual Patient Funding Requests (IPFR). Anne-Marie Matthews, IPFR Co-ordinator for NHS Wales, gave a concise overview of the IPFR process and how decisions are made by either individual health board or by the Welsh Health Specialised Services Committee (WHSSC) IPFR panels. Anne-Marie spoke of how a lay member is an integral member of such panels and the difficulty in recruiting people to serve as lay members. Geoff Greaves, IPFR lay member on the Powys panel then shared his thoughts and experiences on his role. The discussion was then opened up to everyone for ideas and suggestions on how AWTTC could better reach out to people to tell them about lay member opportunities. Some good ideas were shared which we hope to follow up in the near future.
Off the back of this meeting, some follow up information arising from the discussions and also details of AWTTC work where we would value patient and public input was sent to all those who attended. These are also available from our Work in Progress page on the AWTTC website.
Everyone is welcome to join PAPIG and attend quarterly meetings, including patients and their families, carers, patient organisations and members of the public.
If you would like to attend the meetings or if you would like us to email you about our consultations and future meetings please contact us on 02921 826900.
We are combining the next PAPIG meeting with the AWTTC Best Practice Day event which will take place on 19 July. This will be on the topic of sustainability with more details to follow. A video of our March PAPIG meeting is available below.