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New group to support motor neurone patients and families

‘Making memories, not appointments’ is the motto of a new group that has been set up to provide support to motor neurone disease patients and their families.

Connect MND Guernsey chairwoman Abbie Duncan, right, and committee member Trish De Carteret with the flower bouquets that the group will be handing out tomorrow at the Liberation Monument.
Connect MND Guernsey chairwoman Abbie Duncan, right, and committee member Trish De Carteret with the flower bouquets that the group will be handing out tomorrow at the Liberation Monument. / Sophie Rabey/Guernsey Press

Sunday is MND Awareness Day and members of Connect MND Guernsey will be giving out flowers to passers-by at the Liberation Monument, with the aim of promoting awareness of the disease and the group, which has applied to become a registered charity.

Chairwoman Abbie Duncan, who lost her husband to the disease, said the group’s first objective will be to provide visitors who can call in on patients and their families.

‘There’s nothing worse when you go off, you get your diagnosis, and it’s an isolating time, so you need that support,’ she said.

‘They’ll be there just to be there, sharing those experiences, and just being there for support.’

Committee member Trish De Carteret, whose mother had MND, said that for her the most important thing was how her mum got on with her life post-diagnosis.

‘Yes, it’s a terminal illness, but you can live a good quality life,’ she said.

‘You don’t lose your cognitive memory, you don’t lose your sense of humour. I’ve got videos on my phone of my mum laughing even when she couldn’t speak.’

The group has eight people on its committee and some of them will be giving out the flowers from 12.30pm on Sunday, with blooms including alstroemeria, hydrangeas, achillea and cornflowers.

‘Cornflowers represent strength, remembrance and hope,’ said Mrs Duncan.

One of the long-term plans of the group is to provide a one-off grant to people.

‘It will be for people to make memories,’ said Mrs De Carteret. This could be for them to travel or perhaps for them to pay for long-distance family members to visit them. The new group is being set up to complement Motor Neurone Guernsey and the services already available.

‘We want to work alongside them,’ she said.

‘We want to help fill in the bits that they don’t fill and that we identified as service users, as families, that needed filling. Not every charity can do everything.’

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