I will be forever grateful to the Patients Association.

In 2010, after my mother, Anne Robson, sadly died a matter of hours after being discharged from hospital, they were the one organisation who I felt listened to me.

After numerous phone calls and conversations, they asked if they could use Mum’s story in their 2010/2011 campaign to raise awareness of poor care in the NHS. This was bittersweet for our family. 

Difficult to take

It meant that we were heard, that people listened to us and we had hope that something might be done after Mum had been treated so appallingly. On the other hand, it meant that what had happened to her, compared to hundreds of other patients, was worse, and that was difficult to take.

We knew she’d been treated badly, that she’d suffered, but it wasn’t until Mum’s story was compared to other people’s experiences that we knew how bad it was.

One of the hardest parts of the last week of Mum’s life was the fact that due to a norovirus outbreak in the hospital – we weren’t allowed to visit her.

No visiting

At the beginning of the week, she was well enough to ask for a telephone so she could call us – she would beg us to get her out, telling us how badly she was being treated, and how unkind the nurses were.

Still they refused to allow us to see Mum – even though the ‘risk’ was to us. We felt completely at the mercy of the nursing team – if only I knew then, what I know now, I would have discharged her in an instant and taken her back to her lovely care home where the staff adored her, and she was happy and comfortable.

In the years following Mum’s death, I worked for charities in seven NHS Trusts. I learnt about the challenges and complications of working in the biggest organisation in Europe. I learnt about policy and procedure, about red tape and how the best made plans can be blocked for the smallest of reasons.

Volunteers

In 2016 I began working for my local hospital with the aim of improving end of life care. We put together a team called the ‘Butterfly Volunteers, to provide company and companionship to dying patients.

We soon realised that the service was hugely effective – making a massive difference to dying patients, and their visitors (who need nearly as much support as the patient) and the nursing staff. Every hospital should have a team of Butterflies!

Consultation

In 2018 I set up the Anne Robson Trust in my mother’s memory. We work closely with NHS Hospitals to help them replicate the Butterfly Volunteer service.  We have successfully launched 11 teams of volunteers and are working with eight further hospitals to help them start teams in the coming months.

To date, these amazing volunteers have made more than 13,600 visits to dying patients. We also provide support to people in our local community, and nationally via our telephone support service (0808 801 0688).

I feel it’s important to get involved in the Government’s consultation on proposed legislation on visiting in health and care settings.  Had we been able to visit mum in hospital we could have ensured she took her GP-prescribed medication, had enough to drink, and was comfortable. We would have been able to raise concerns with staff if we felt she was declining – sadly, none of these things were done in our absence.

The consultation closes at 23:29 on the 16^th August. It only takes a few minutes – and could make the world of difference to care home residents, hospital patients and their loved ones.

Liz Pryor, MBE, Founder & CEO of The Anne Robson Trust

To find out more about the Government's proposed development of secondary legislation on visiting in care homes, hospitals and hospices and respond to the consultation use this link to the Government's website.
To learn more about the Anne Robson Trust visit the charity's website.