The Government must introduce payments for patient advocate campaigners if we are to fix the healthcare system from the ground up, campaigner Stephen Teap has said.
The Department of Health has yet to draw up a payment policy for patient representatives despite the fact that this was first promised almost 18 months ago.
Mr Teap, who sits on the CervicalCheck steering committee, said expecting people to volunteer their time "exploits the goodwill" of many who have gone through the healthcare system or have lost loved ones.
He said committees and boards across the healthcare service will not be able to attract the best people without supports and remuneration for patient representatives.
"Patient representatives and medical professionals working together can be a voice from the ground up — it's about attracting the right people, and a policy like this will certainly do that.
Mr Teap's wife Irene died of cervical cancer in 2017.
The father of two added that it is essential to attract people of different genders, ages, and backgrounds to become patient representatives, but it is currently impossible for many to take days off work and make childcare arrangements to carry out this work on a voluntary basis.
The lack of payment for patient representatives was criticised and described as "exploitation" by Dr Gabriel Scally in the wake of the CervicalCheck controversy.
Former health minister Simon Harris had promised that a policy to support patient representatives would be published by October 2019. However, this deadline was not met and progress completely stalled last year.
While in opposition, current health minister Stephen Donnelly said the treatment of patient advocates has been nothing short of appalling.
“The exploitation of patient advocates like Stephen Teap and Lorraine Walsh has got to end," said Mr Donnelly in December 2019, adding that then health minister Mr Harris had "gone past taking advantage of their goodwill" and was now "treating them with disdain".
A spokesperson for the Department of Health said the increased patient representation on committees and groups throughout the health service in recent years has been an important means of enhancing the responsiveness and transparency of healthcare systems. Actively involving the public from the outset represents a cultural shift, one which will be of mutual benefit to the public, patients, and healthcare providers.
The spokesperson confirmed that work first commenced in 2019 in relation to the selection and payment of patient representatives on certain committees, working groups, and other relevant formations, who are involved in substantive, active, and decision-making roles at a strategic level in the health service.
"The purpose of developing such a policy is to ensure that patient participation is embedded in health policy and service development and to ensure that patient representatives are recognised and valued for their contribution," said the spokesperson.
"Work on this policy development was delayed in early 2020 but has recommenced.
"A focused stakeholder engagement on the development of the policy is ongoing and it is planned to follow this with a public consultation later in the year, before a finalised policy is published."