21st June is Motor Neurone Disease Awareness Day. Motor Neurone Disease, or MND, is a progressive condition which affects the nerves in the brain and spinal cord, stopping them from sending messages to the muscles, and affecting people’s ability to walk, talk and swallow. There are around 5,000 adults in the UK living with MND, and around a third of them will die within a year of diagnosis.

Local hospice care charity Phyllis Tuckwell cares for patients living with an advanced or terminal illness, such as MND. As MND is a complex disease, many specialists are involved in the care of patients, from doctors, nurses and health care assistants, to physiotherapists, occupational therapists, complementary therapists, speech & language therapists, dietitians and respiratory care teams. Lyn Bevan, a specialist practitioner for Guildford and Waverley, supports some of the MND patients at Phyllis Tuckwell, by acting as a single point of contact for them, linking them to the different specialists within Phyllis Tuckwell and in the community, at hospitals and MND centres. Paul, who has MND, is being cared for by Phyllis Tuckwell and is in regular contact with Lyn. “It’s so good having Lyn as the single point of contact for everything. It makes my life a lot easier,” he says.

Paul was referred to Phyllis Tuckwell when he was diagnosed with MND. “At that time, I had little idea of what a hospice was, other than a place to go to die,” he says. As well as caring for patients and their families at the end of life, Phyllis Tuckwell also helps them earlier in their illness, to live as full a life as possible and to retain their independence for as long as they can, maintaining their quality of life. Paul can access a range of support appropriate to his needs, which were initially problems with speech and swallowing. As his condition progressed, the care he received changed accordingly. “I can now no longer speak at all. I walk incredibly slowly and I’m losing sensation in my fingers.” Paul types what he wants to say into a voice app on his phone, which speaks the words for him. “I know my disease is progressing, so it’s reassuring to know that Phyllis Tuckwell is there if I or any of my family need them.”

Paul has seen Phyllis Tuckwell’s physiotherapists, who have shown him exercises which he can do to ease the stiffness in his legs, and occupational therapists, who have helped him to adapt his house to his needs. He has installed ramps and a downstairs wet room, and has walking and standing aids too, as well as a cushion which he can inflate at the press of a button, to assist him from sitting to standing.

“It’s really important for Paul to be able to access the specialist care that he needs,” says Lyn. “As MND coordinator, I can assess his symptoms and refer him to the right team to get him that support.”

“I feel very well looked after,” says Paul. “Living with a terminal illness can be a lonely place, but to have so many people looking out for me is a huge source of comfort.”

You can read Paul’s full story at www.pth.org.uk/paul-js-story

To find out more about the care that Phyllis Tuckwell provides for patients and families who are living with an advanced or terminal illness such as MND, please visit www.pth.org.uk