Patient says life became a ‘picture perfect model of disability’
Louise Haughney said the National Advocacy Service helped her to get her life back
Minister for Social Protection Joan Burton said people with disabilities should be involved in the key decisions in their lives. Photograph: Brenda Fitzsimons / The Irish Times
A woman with cerebral palsy who was left incontinent after a procedure said she was left in a “dark, distressful place”.
Louise Haughney (40), who lives in sheltered accommodation in Sligo, said her home support hours were reduced from 40 hours to 35 hours after she had a catheterisation three years ago.
Ms Haughney was one of the speakers this morning at the National Advocacy Service for people with disabilities (NAS) conference. The NAS was set up two and a half years ago to offer professional advice to disabled people.
Catheterisation is the insertion of a catheter into the bladder to drain it. It is used to help people suffering from incontinence.
Ms Haughney told the conference the procedure did not work for her and she was left in constant pain. The procedure was reversed.
“Devastatingly, because of my cerebral palsy I had lost function and it quickly became evident that my bladder spasms could not be managed without medication,” she said.
She was catheterised again but was left so low that her life became a “picture perfect medical model of disability …. I grieved the loss of my independence as bitterly as I would a much cherished loved one.”
She praised the work of the NAS for helping her to challenge her medical care.
“Trying to advocate for myself and being so ill was soul-destroying. When I finally asked for the assistance of an advocate through the NAS it was actually a relief,” she said.
She told delegates that the advocate helped her to work with her hospital and get a plan from her urologist to be followed any time she is admitted.
She told the conference: “Since I started working with an advocate I have regained control of several elements of my life”.
“Gradually with the respect, dignity and unconditional positive regard for my advocate I slowly gained confidence and belief in myself and my ability again. I have a voice, I am heard and what I say matters.”
Since it was started in March 2011 the NAS has helped 1,000 people with disabilities advocate for better care.
Speaking at the conference in Dublin Castle, Minister for Social Protection Joan Burton said people with disabilities should be involved in the key decisions in their lives.
She said 40 people were now working as advocates for disabled people across the country.
“The National Advocacy Service has a key role to play in empowering people with disabilities to speak for themselves, in ensuring that they are free from discrimination and can participate fully in an equal society.”