Motor neurone disease – Lisa’s story

We are constantly adapting our services to meet the ever-changing needs of our community, and one of the ways we are doing this is by shining a light on some of the myths around hospice care. One of the most common misconceptions is that our services are only accessible to people living with cancer.

But Dorothy House is here for anyone affected by any form of life-limiting illness – whether it’s lung disease, multiple sclerosis (MS), or heart disease – not just cancer. In fact, 22% of the patients we care for do not have a cancer diagnosis – one of those patients is Lisa.

Lisa was diagnosed with Motor Neurone Disease (MND) in October 2020, after experiencing symptoms during the first lockdown. She was introduced to Dorothy House Hospice Care by the MND Specialist Practitioner, based at the RUH, who referred Lisa into the Hospice. She told us, “I didn’t realise Dorothy House could support a lot of other people with different conditions. I’d heard of them, and maybe knew a little about what they did, but I had no idea how much support they could provide to someone in my situation.”

Since her diagnosis with Motor Neurone Disease, Lisa has been receiving care from Dorothy House Hospice Care in a number of ways. She has physiotherapy with Val, one of our Clinical Support Assistants, who visits once a week. During these visits, Val carries out exercises and massage therapy, and Lisa told us, “I absolutely love it. It’s the best feeling.”

But it’s not just the physical aspects of Lisa’s illness that Val supports with – it’s the emotional side too. “I actually think of her as more of a friend than my physiotherapist. If she can see that I need support, she will go out of her way to help with that situation, and I am so grateful for that.”

Lisa also told us of the support that Val provides to her family, “She’s really friendly towards my daughter and my husband.” Evelyn, Lisa’s 4 year old daughter, has been particularly fond of the art activities they have done at home together, which Val arranged with the Creative Therapies Team.

Another myth that Lisa’s story has dispelled: our care is only for patients. In fact, we’re here for the whole family, loved ones and carers because it’s not just the patient that needs support. In Lisa’s case, she told us how her daughter has been doing play therapy through our Children & Young People’s Service. “The lady who runs it has put together a special box and taught us how to create that special play time. She’s shown us how to approach it so Evelyn can express her emotions – it’s really important to us.”

While Lisa has mainly received care in her own home, she knows that support is available at the Hospice if she needs it. “It’s nice to know that it’s there if it came to it. It’s quite relaxing being there, I’ve found. It feels like a home.” She urged anyone in a similar situation to reach out, adding, “When I’m there, I don’t feel poorly, I feel normal. They make you feel very welcome and they have a lot of ways to support families. Do not feel frightened about approaching Dorothy House.”