From believing my luck had run out, to regaining my peace of mind – Clare took me to meet Elise (hospice manager) at the Sue Ryder Hospice, such a professional place, and Elise herself warm, sympathetic, sweet and straight-forward – she and Clare have lifted the load from my shoulders."
"My mother, Yvonne Johnston, aged 85, wrote this in her diary in October last year. If my Mum were here today I feel sure she would say how beautiful her death was; it was everything the staff at Sue Ryder had promised her it would be, and more.
"Mum was diagnosed with pancreatic cancer in September 2012. The news simply terrified her, she shook visibly for over a month. She made the informed and brave decision not to have treatment. On diagnosis the consultant advised her to find a Macmillan nurse; she was an old woman, in total shock, and didn’t know where to turn.
"Essentially, from then on, she seemed almost to fall out of the loop of care. Her doctor visited her on only a few occasions. Luckily a close friend worked at Sue Ryder Nettlebed Hospice. We arranged an appointment, and they took her under their care. From then on in Sue Ryder became my mother’s lifeline; other services, without prejudice, simply failed her.
"Her cancer took hold very quickly, and she deteriorated rapidly. We were simply not prepared for what would happen. Mum had to have an overnight stay in hospital for a blood transfusion, which turned out to be a traumatic experience. As a result she put in her end of life plan that she would rather just die than go back to hospital.
"Mum really wanted to enjoy the comforts and security of her home during this difficult time. Having had no experience of end of life care this was a challenge in itself, but both myself and my mother had advice, support and real friendship from our Sue Ryder nurse.
"On one occasion Mum coughed up blood, which was truly terrifying. We thought she was going to die literally then. Luckily she was referred to the hospice where she stayed for two weeks and was discharged home feeling a different person.
"Mum was terrified of dying. This was a real worry to me. In the beginning she wanted to be treated at home. However having stayed at the hospice, and being staggered at the quality of care she received, she learnt not to be frightened. Most importantly she felt safe for the first time since her diagnosis. At home she had begun to feel out of control.
I can’t imagine how we would have coped without the almost daily advice of the Sue Ryder community nurse, particularly with the medication."
"By December Mum’s symptoms worsened and it became evident that she needed to be re-admitted. She was delighted to return to Nettlebed; it felt like home. Luckily there was a bed available for her, and she chose to spend her last days in the hospice, where she felt confident and happy.
It is very clear to me now that the system does not work for everyone. My mother was left unsupported at the most frightening time of her life."
"She didn’t know which way to turn and neither did we. We had no idea what choices were available to us. We are lucky enough to live close to a Sue Ryder hospice. Sadly I’m left with the conviction that most terminally ill people sadly don't have access to an acceptable standard of care.
"Mum died, with great dignity, at Nettlebed Hospice on 19th December 2012. She was nursed in a way she thought did not exist in the world today. She was fortunate enough to be given the choice to die in a hospice. We were the lucky ones; but I cannot help but wonder what happens to those who are not so fortunate."
Read more about our campaign: Dying isn't working