Hospice News

Patient & Carer Stories

We see a wide range of conditions within the care we provide to patients across our region, from cancer to neurological illnesses. Chris is living with Multiple System Atrophy (MSA), a rare neurological illness. He lives with his wife Penny, who now cares for him. Chris has been attending our Neurological Living Well programme as part of our Day Services at the Hospice.

Chris says, "My illness started with a hand tremor. I put it down to a trapped nerve and ignored it for a while. Pen and I were going to work when she noticed it. She told me I should get it checked out with a GP, so I arranged an appointment and they put me in touch with a Parkinson's team. It was there that they told me it was Parkinson's Disease. It was absolutely devastating for us; we were in floods of tears.

"Two years after that, my blood pressure started dropping. My diagnosis changed from Parkinson's Disease to MSA. We'd never heard of it before, it was like another bomb had dropped. Pen worked in a hospital so when the pandemic happened she continued to work and I had to spend a lot of time on my own."

Chris has difficulty with his mobility and can no longer drive. His wife Penny, cares for him at home. Penny says, "There was a lot of anger and upset at the start because he couldn't process it. We've had to adjust to a lot of things. He tried to hold onto things he thought he could do."

Chris was referred to the Hospice after his illness progressed. He started attending our new Neurological Living Well programme at the Hospice, created for people living with a neurological illness. The groups run for six weeks and cover things like breathlessness management and mindfulness, as well as understanding how to come to terms with a neurological illness. It gives space for people to discuss what's on their mind, or connect with others in the group in a relaxed environment.

Penny says "When Chris was referred to the Hospice, we were both scared as we thought it meant end of life. We had no idea that the Hospice did so much for the community.

"When we started going to the Hospice, we suddenly didn't feel so alone. It's opened so many doors for us. It's having someone you can trust. We felt that we'd turned a corner when the Hospice got in touch, it changed so much for us."

Chris says, "The group has been comforting as I get to meet people in a similar situation. The Hospice are so experienced in dealing with different illnesses, I can't speak highly enough about them. It's welcoming, friendly and I felt embraced by the group and by the staff. I can't express enough gratitude."

Neurological Living Well programme

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