Motor neuron sufferer’s fight goes on for aftercare

Andrew Lydon, who has Motor Neuron Disease, had to fight tooth and nail to get access to life-saving surgery . . . and now, one year on from winning that battle and coming through the operation, he has another fight on his hands – securing an aftercare package from the HSE.

The HSE had initially refused to grant the Connemara man a tracheostomy to extend his life. It was HSE policy not to provide MND (also known as ALS) patients with this procedure because of the prohibitive cost of aftercare packages associated with the operation. Some aftercare packages would cost tens of thousands of Euros per annum.

But after a public campaign by the father of two, and his wife, Sally Lydon, the HSE agreed to operate on the Baile na hAbhann native, whose home is now in Tuairin.

Andrew underwent surgery at University Hospital Galway (UHG) in mid-April last year, and it went well, but he has been occupying a bed in the High Dependency Unit (HDU) for more than a year.

Andrew doesn’t need to be in HDU, according to his wife Sally, who has become increasingly frustrated that the HSE hasn’t agreed to an aftercare.

For the first six months, she travelled to the city hospital every day to see Andrew; but now she takes turns with his mother, and goes every other day.

She has called on the HSE to follow through on its commitments to provide appropriate care for her husband.

“The HSE needs to get the finger out. They need to organise a meeting and sit down with me and talk about an aftercare package. He doesn’t need to be in HDU; he’s not sick in that sense. He is in HDU because they have the appropriate level of nurses in there. Ordinarily you might be in HDU for a week or two but not a year or more.

“Andrew is getting guilty about taking up a bed in HDU but the HSE won’t make a decision about aftercare. It’s not appropriate that he would go into a nursing home, he’s only 47. He needs 24-hour care and I can do a lot of it but I’m not able to do it all on my own,” she said.

See full story in this week’s Connacht Tribune.