Members of the Scottish Parliament's cross-party group on muscular dystrophy (MD) are to request Health Secretary Alex Neil to meet with them to discuss a crisis in respite services for young adults.
As reported in The Herald earlier this month, the Children's Hospice Association Scotland is imposing an age limit on those using its services.
Members of staff from Robin House, one of two CHAS hospices, confirmed at the cross-party group's meeting this week that in three years anyone over 21 will no longer be able to use the respite service, which is aimed at children.
Parents of young adults affected by the muscle-wasting disease expressed concern and alarm at the short timescale for finding replacement services, given that adult hospice services are mainly set up to work with elderly people.
Jackie Baillie, the group's chair, described the issue as a problem of success – medical advances mean more young people survive into adulthood with MD.
She said she would seek a members debate on the issue as well as passing on the request to Mr Neil to attend a future meeting.
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