Our panel event on 21 October, was a timely opportunity to reflect on what we can do to advocate for better care and ensure people’s rights are respected.
Our panel of speakers from across the UK, each shared their perspectives on how we can push for improvements to care and what action you can take if you or a relative or friend experiences poor care.
Raising a concern with the Ombudsman
We heard first from Zita Noone, who supported her sister who received care and advocated on her behalf. Zita shared an emotional story of the poor care her sister received and why she has taken up various incidents with the Ombudsman.
Zita’s story resonated with other participants (joining us in the room and virtually), with people sharing when they have felt ignored or dismissed when they have raised concerns about care.
The importance of a public inquiry
Naomi Fulop, from Covid-19 Bereaved Families for Justice UK, spoke about the importance of the public inquiry into Covid. Naomi shared why it mattered so much to bereaved families and her own experience of losing her mum. Having accountability at all levels is critical to ensuring good care.
Campaigning for legislation
Alison Leitch, from the campaign group Care Home Relatives Scotland, described the journey that she and her fellow campaigners have been on: the number of meetings with Ministers and government officials, the work to gain cross-party support, building a community which has resulted in over 100,000 signatories to a petition. All vital to the successful introduction of Anne’s Law in Scotland earlier this year and recognition of the rights of people living in care homes to spend time with the people who are important to them.
The role of the media
Alannah Francis, a senior reporter from The i Paper, encouraged people to speak up and share their stories with the media. Alannah highlighted the role the media can play in holding power to account and making sure that poor care isn’t hidden away, but instead is taken seriously and investigated.
Using the law
Emma Jones, partner at Leigh Day, a law firm set up to tackle injustice, explained how bringing legal cases can have a huge impact – not just for individuals but more broadly. Emma also referenced the Covid Inquiry report on the care sector, noting how this focuses attention on shortcomings and what needs to change. Emma welcomed the recognition in the report that people relying on care should have a right to in-person visitors. Emma noted that this is what Care Rights UK is trying to secure along with its campaign partners Rights for Residents and John’s Campaign. Some amendments to the Health Bill designed to ensure in-person access to support are due to be debated next week in Westminster.
Maintaining people’s rights
Melanie Minty from Care Forum Wales, which represents independent health and social care providers across Wales, spoke about challenges from a provider’s perspective. She voiced concern about the discrimination people in care homes experienced during Covid and stressed how providers want to meet people’s well-being and maintain their rights. Melanie called for care workers to be as highly valued as NHS staff.
Fear of repercussions
Chair, Helen Wildbore, CEO of Care Rights UK, summarised the concerns raised about the power imbalance between those providing care and those relying on it and highlighted how often people who call the Care Rights UK adviceline fear speaking up because of possible repercussions.
A number of audience members shared negative consequences people had experienced after raising a concern about care.
Care is ‘critical infrastructure’
The panel agreed that greater parity was needed between health and social care and that funding was a key issue to improve access to and quality of care and training. Naomi Fulop made the observation that care should be treated, like water, as critical infrastructure.
There was also consensus that trusted friends and family members must be seen as part of someone’s care team.
Alison Leitch said that with Anne’s Law, they had always believed that once someone in a position of power had personal experience of care, this is what would make a difference. With new political leaders with lived experience, including Andy Burnham having personal experience of his father’s care, there is reason to be optimistic that this will be a time for change.