Using lived experience to campaign for a new right

17/03/2025

Last week, our director Helen and our wonderful supporters, Jane and Nicola, presented the opening plenary at the National Care Forum’s Managers Conference, with More Than a Provider. The session was about encouraging people with lived experience of care to get involved in campaigning on the issues that matter to them. Jane and Nicole have kindly permitted us to share their speech for our blog, which shares their stories of losing their beloved mums in the pandemic, and the inspirational journey they’ve been on as campaigners since then.

Jane:  

Nicola and I have been close friends for 36 years. We have a lot in common but never imagined that that would include losing our Mums to Covid-19 in care homes seven weeks apart. The pain of that loss is indescribable, any death is painful but the trauma of death by Covid is like no other, not least because of the enforced isolation from our loved ones. Everyone must deal with this in their own way but as we navigate our way through our grief, we have focused on efforts to ensure that no one suffers in the same way again, by campaigning for the legal right to a Care Supporter (Gloria’s Law).  

After my dear dad died in October 2010, we moved my mum to be nearer to us. Sadly, just months later, she was diagnosed with Alzheimer’s. She remained active and we went out together most days, had lovely holidays together and I am confident that all we did helped to slow the progress of this terrible disease. 

All of this ended abruptly when, on 1st December 2019, Mum had a severe stroke. From the hospital, she was moved to a care home very close to us. I remember telling her that there was nothing that could stop me being there with her and I was by her side every day until the home locked down on 17th March 2020. Up until that point, Mum had been making the best progress we could hope for, but she had lost not only a significant part of her memory and her mobility, but now, it seemed to her, her family too. This was utterly devastating for us both and from that time Mum’s mental health began to deteriorate causing us both extreme anguish and distress. 

My words can in no way reflect the degree of torment our separation and Mum’s continuing mental decline brought us. I felt utterly helpless. I was grateful to the care home for all the phone and Skype calls and the half hour garden visits when they were allowed but they were just not enough - I wanted to be able to sit with my mum, hold her hand, hug her, laugh and cry with her, share precious memories with her and continue to advocate for her, all things that the pressured carers and nurses couldn’t do in the same way as a daughter.  

In that time of darkness came a moment of light and hope. I discovered One Dementia Voice, who were asking the government to grant a named family member key worker status to end the negative impact of isolation on dementia patients and to restore their human rights. Their powerful and knowledgeable words compelled me to write to Boris Johnson, the Prime Minister, on 6th October 2020. The draconian rules that care homes were being forced to abide by were causing distress, ill health and unnecessary deaths not mentioned in any statistic. I implored the government to act with urgency and to grant me, and all those in the same position, the status of carer, something that for our loved ones would be life changing, life-enhancing and in some cases lifesaving. 

Nothing changed. I lost my mum on 27th January 2021, I hadn’t been able to hug her or hold her or do all the other things a daughter should do for her mum for the last ten months of her life. I was, and remain full of, guilt, devastation and trauma. 

Nicola: 

I share Jane’s emotions. 

In the last five years, both my parents were care home residents at different times and tragically both had dementia. In both cases visiting was stopped, for my father due to a norovirus outbreak in the care home (which didn’t affect him) and for my mother due to Covid which she sadly succumbed to. Without us there, their mental and physical decline was rapid, and to be honest, I think they both gave up.  

One event clearly evidences the impact of separation from loved ones. Two days before Mum’s birthday in November 2020, we were called and told we could go in (with all the usual restrictions and PPE) for end-of-life visits. As per the rules, my sister, brother and I all arranged to visit separately to say our goodbyes. I am sure it was because of these visits that mum rallied - to the extent that she was no longer considered ‘end of life’ and consequently we were once again banned from visiting. This decision will haunt me forever. She suffered another three weeks of isolation before once again we were called in and sadly, she passed away. At the time when our parents needed us most, we should have been there but couldn’t be. That is wrong.  

Both:  

In early 2021, Nicola and I became members of Covid Bereaved Families for Justice to ensure lessons were learned. We continue to support their admirable work in every way we can but, with such wide-ranging issues to fight for, we felt the need to focus further on those critical to us, first and foremost the vital need for a Care Supporter for all those in health and social care settings. We became members of the Care Rights UK Lived Experience group. 

We have campaigned in as many ways as we can including engaging with the media through TV, radio, and newspaper. We met with Lady Hallet, chair of the Covid Public Inquiry, and have attended the Inquiry on many occasions. We have written in magazines; written to politicians; participated in research studies; met with our MP; and attended a meeting in Parliament. We hope this raised awareness of the need for a legal right to a Care Supporter. It helped us to feel we are actually doing something, which we had been denied with our mums. We are doing this in honour of our mums and also for the future - directly or indirectly this will impact on us all at some time. 

The power and worth of our campaigning was made evident in March 2024, when we wrote to the Daily Mirror who were collecting questions for Sir Keir Starmer who was preparing for his election campaign. We were astonished that the Mirror chose to focus on ours, asking for a commitment to implementing Gloria’s Law. Sir Keir backed our call for a legal right to a Care Supporter being enshrined in law. We continue to press for this change to happen and we hope to encourage residents and their relatives to speak out too. The power of raising voices can make a difference.  

We firmly believe that this law is not only a basic human right for residents, but it is in the interest of all stakeholders. A Care Supporter is so much more than a visitor, they advocate for their loved one and in so many cases are their memory and their lifeline. This should not be underestimated or trivialised by deeming the role a visit. We help our loved ones continue to be who they are - no-one deserves to lose their personality or their rights on entering a care home.  

Our personal stories illustrate the catastrophic harm isolation can cause particularly to those with dementia. Sadly, it is too late for our loved ones but we hope that through campaigning, and with your support, we can affect change to stop that happening ever again. 

Find out more about our campaign for the new legal right to a Care Supporter here.