From diagnosis to death it took just eight months – it was as brutal and scary as it was rapid. We could never keep up with the relentless progression of the disease.Alun Owen, Chair, MND Association
Marie Grant contacted MND Connect in great distress. Her husband James has MND, is very disabled and was receiving poor care from his care home who were ill-equipped to meet his complex needs. The local NHS and the Care Quality Commission got involved and moved James to a different home. However under the existing care home’s cancellation policy, the family were due to pay for a further 28 days. This left the family facing a bill of nearly £4,000. Marie shares her experience and how a call to MND Connect secured James’ care.
“The stress was overbearing. I sold all my jewellery but it only covered the cost for one week. I honestly didn’t know what we were going to do. I was so worried this would mean he wouldn’t be able to stay in the new home. My husband can’t talk, has dementia, can’t move without support and has to be encouraged to do everything. I called MND Connect just because I needed someone to talk to. I called at 4.55pm, by midday the following day, they had solved the situation. There are no words to explain what this meant to us.”