My message to MPs about why we need Gloria’s Law
Hazel’s speech to MPs at our event in Parliament on 6 June 2023, ‘The right to maintain contact with a Care Supporter in health and care settings (Gloria’s Law)’
This is my mum, Barbara Skinner. She was 95 years old when this picture was taken, just before lockdown.
I am here today to give you all an understanding of the impact of Covid restrictions on mum and our family. Her story is unique but parallels so many heart-breaking stories of thousands of others during the pandemic whom I am representing here today.
Mum went into care in 2020. Until then she had lived independently, but following a fall we felt that residential care would offer her greater safety, whilst a family member would visit daily and take her on jaunts. Mum did not find the care environment stimulating, but frequent contact with the family kept her energised and entertained. She was of sound mind.
When covid struck we were initially pleased that mum was protected. However, it quickly became apparent that our contact with her was going to be severely restricted. She was deaf and her hearing aids went missing in week one of lockdown, so she couldn’t use the phone and we were only able to Facetime her, weekly, supported by staff – no privacy. Mum never really understood why she couldn’t see us, and that the world had “closed down”. How could she comprehend what was going on in the outside world as a prisoner? She missed our daily chats and visits and was very distressed without them.
Care home staff were kind to mum, but they could not replace family by recalling shared memories and history, or knowing what made her tick and what questions to ask. All activities in the home ceased. There was no stimulation, and she was often confined to her room. She must have been bored out of her mind!
Mum’s mental health plummeted. In week 6 she rang me unexpectedly and told me we had “abandoned her”, that she had had “enough” and that we should get on with our lives without her. I was distraught, yet powerless. A week later she ended up in hospital. A consultant rang to ask me to try and cajole mum to take her medicine. It was such a difficult time.
As society opened up, we were allowed to see mum through a closed window (remember she was deaf!). This progressed to time-restricted half-hour weekly visits for two family members in the garden, with lateral flow tests, full PPE, no physical contact and under observation. But we were SO grateful! We had to charm the receptionist to secure a visit, as there were more residents than slots. It seemed to me that different care providers were left to make up their own visiting rules, interpreting the Guidance as they wished, and no-one was ever held accountable.
Summer gave way to Autumn. We were offered time-restricted 30-minute weekly visits in a room with a partition and microphone. These visits were not successful. Mum could hardly hear us and kept trying to touch the plastic to reach out to us. Once she said: “this is silly” and walked out. We left in tears! Our visit for that week was over!
Several weeks’ later, mum fell, broke her hip and transferred to hospital. Amazingly, she survived surgery. The only reason we were able to visit her was that the hospital matron – a mum from the school gates - recognised me through my mask and kindly placed no restrictions on visiting. This act of exceptional compassion was such a precious gift. Mum was finally able to have contact with her family again and we spent time on the ward simply holding her hand and chatting. As a direct result of our support, her mental health improved significantly: she was laughing and smiling again. Once she said: “there was a time when you didn’t visit me, but we won’t talk about that again”. It was heart-breaking that she didn’t know how hard we had tried during those dark months to gain access to her.
Then back to the care home, and to one 30-minute slot a week. Mum needed to be encouraged to walk and we had to employ a private physio as care staff had no time for this.
Just before Christmas 2020, we received a call to say that mum had fallen and lost a lot of blood. A doctor gave us two desperate choices: either accept end-of-life care, or she could go back to hospital again with no visits, where it was likely that she would die alone. We decided we would stay with mum and were finally offered unfettered access. Mum lasted two long weeks. She knew we were there (and we were, 18 hours a day) and was happy we could finally see and touch her again.
What needs to change
So why am I here today? It is too late for me and our dear mum. She and we lost that last precious year of her life and went through so much trauma. Yet we are determined to fight so that in the future, no matter what happens, no vulnerable person is ever left to face such a distressing ordeal completely alone.
At the start of the pandemic, preventing the spread of the virus became the overriding imperative with scant regard to the mental well-being and human rights of those in care. The inhumanity I have described must NEVER be allowed to prevail again. We must learn lessons from what happened.
MPs now have an opportunity, by supporting Gloria’s Law, to change this for all of us going forward. Having a legal right to maintain contact with just one family member as an Essential Care Supporter, would have made the world of difference to my mum. How different the last year of her life would have been had she been able to have just one of her children by her side. My presence would have preserved her mental health. The care I provided was not an optional extra. It was just as vital as the care she received from paid members of staff, and I would have gladly undergone the same rigorous testing and safety procedures as they did.
I hope you will impress upon your colleagues the need for the Care Supporters Bill to be passed.
Thank you.