When clinicians, patients and health service staff partnered in the planning, design, development and improvement of services it could have a real impact for patients, according to Anne Lawlor, Chairperson of the HSE Patient Forum. Rare Diseases Advocate and an active patient partner on many HSE projects.
She said that, for example, when she needed information on the 22q11 Deletion Syndrome in 1998, she found very little information in Ireland at the time.
“I had to go overseas for information where I connected with ‘syndrome specific’ researchers, clinicians and other 22q11 families. These connections were invaluable to me personally and in time the organisation 22q11 Ireland was established, our focus has always been on integrated care and using our lived experience to improve quality of life for our children.
‘‘It has not been an easy road, but amazing things have happened. A 22q paediatric clinic began in 2017, under the leadership of Consultant Paediatrician, Dr Suzanne Kelleher and today in 2024 I am delighted to say that we now have our own 22q ‘syndrome specific’ expert. Together with Dr Kelleher, we advocated for a care-coordinator, presented a business case to the HSE and I’m proud to say that since November 2021 we have a care-coordinator in post, Wesley Mulcahy. Together they are the ‘dream team’ for our families.
Anne recently discussed the critical theme of patient partnership with Joe Ryan, HSE National Director of Public Involvement, Culture, and Risk Management on a HSE Health and Wellbeing podcast.
‘‘Another proud moment was winning a 2023 Health Service Excellence award for our innovative (transferable) model of care pathway at the CHI clinic. Instead of coming to CHI at Crumlin for multiple different appointments, patients’ care can now be coordinated on the same day or can be better coordinated in the community. Wesley is the single point of contact for questions that come up in relation to the ongoing care of a young person with 22q11, all of which significantly reduces the stress and burden on parents and extended families. The difference he has made simply cannot be underestimated.
‘‘The first patient partnership conference was held last year – that came about after many conversations with those I would describe as ‘changemakers’, people who can see the value of patient partnership. This included conversations with people in the HSE like Dr. Colm Henry, Joe Ryan and the CEO, Bernard Gloster. We’re pleased to build on the work to date and we’re delighted to be working in partnership with the HSE on our second conference in September 2024.
“Along with Patient Forum co-chair Laura Kavanagh, and all our members, we have been advocating for this for a long time. There are great pockets of work where patient partnership is happening, but this is moving towards doing it differently on a national scale.’’
Joe Ryan, said that partnership initiatives were currently taking place across the Irish health sector, but in different ways and with varying degrees of success. This was an ‘evolving collaboration.’
He said the HSE was fully committed to facilitating partnering with patients, service users, family members, carers and advocates in the planning, design, development and improvement of services at strategic and policy level. A current focus of the HSE’s Patient and Service User (PSUE) team was the implementation of the Better Together Health Services Patient Engagement roadmap, with the initial emphasis on the development of training materials around patient engagement.
‘‘We know that common approaches are needed to ensure shared expectations are realised and agreed goals are met. Working in partnership with patients and service users (and their families, carers and supporters) will be a cornerstone of how we work across our health system. This requires a cultural shift but offers numerous opportunities. Patients have a unique perspective which makes them invaluable partners in how we design, deliver and evaluate our health services. There is a growing recognition across the HSE of the invaluable role that patients and service users play in shaping health care delivery, policy development and organisational governance.’’
Joe Ryan referenced how a key focus of the HSE in 2024 has been the development and approval of patient partnership structures as part of the health regions. A partnership proposal was developed by patient representatives with HSE staff which sets out what should be happening around patient partnership in each HSE region. The focus was now on working with the six HSE Regional Executive Officers to implement this proposal, and embed partnership in the health regions.
The HSE was also working in close partnership with members of the National Patients’ Forum and some of the examples of this partnership included:
- In 2024 12 new members joined the National Patient Forum, which include representatives of advocacy organisations and individual patients and service users
- In November 2023, 35 patient partners, HSE staff and Department of Health staff attended a workshop on the Development of new Sláintecare Strategic Framework 2024 – 2027. Slaintecare Programme Management Office provided an update on the progress of the implementation of Sláintecare to date, fundamental principles and key priorities for 2024-2027, which was followed by a workshop to help inform the next steps in the development of the Framework.
- Nine patient partners are participating in the HSE’s Mobile Health App development
- Patient partners invited to participate in three workshops with the Future Eligibility Unit in the Department of Health, which included an input into the scope and design of a survey. This engagement is ongoing.
- Two patient partners joined the Health Regions’ Steering Group
- The National Care Experience Steering Group now includes two patient partners in its membership
- In June 2024 six patient partners took part in the Patient Initiated Review focus group
- Two patient partners joined the Population Based Planning Advisory Group
- Patient partners were invited to participate in the National Treatment Purchase Fund (NTPF) programmes and projects
- Three patient partners joined the Department of Health Women’s Taskforce Patient Voice Forum working group
- Patient partners were invited to participate in the focus groups as part of the Development of Guidelines for Medical Education and Training by the Medical Council
The second annual HSE Patient and Public Partnership Conference, “Changing Patient Outcomes: One Partnership at a Time,” is on Tuesday, September 24 at Dublin Castle, and you can register to attend virtually at: https://www.hsepatientconference.ie/
