Is a child’s life ‘worth more than €600?’

A LOCAL woman has questioned if the HSE believes the health and life of her daughter is “worth more than €600”, following a traumatic experience.

Nicole Norton (19), who suffers from Cerebral Palsy, requires intrathecal baclofen therapy (IBT) to prevent her from going into possible spasm, internal organ and heart failure.
In an interview with The Clare Champion, her mother, Ann Norton, said she got a phonecall from a senior clinician on Wednesday of last week informing her that the HSE would no longer pay for the cost of refilling this pump because it is too expensive.

It costs about €600 to provide medication for the pump every five or six weeks.

Ms Norton said she was told the medication for the pump is “not being released from the pharmacy due to the cost”.

“I felt sick in my stomach that the HSE would put Nicole’s life at risk for the sake of €600.”

Councillor Norton said if Nicole goes into spasm, this can lead to internal organ and possible heart failure. She made numerous calls to other hospital health professionals and was told by one staff member that the failure to refill the pump was due to “miscommunication”.

However, when she went to UHL for an appointment to have this pump refilled with medication on Friday, after receiving a commitment the previous day, she questioned the senior clinician who again confirmed the decision taken on Wednesday was “down to money”.

Ms Norton said she was shocked with this explanation as she doesn’t believe her daughter, or  anyone suffering from Cerebral Palsy, should be placed in a position where effectively a price is put on their life.

Nicole’s pump was filled on Friday afternoon but her mother does not know what will happen when the next refill is due.

Describing her experience as “unacceptable”, she has requested that the HSE provide her with a firm commitment that Nicole or any other patient using this pump will not encounter similar difficulties into the future.

She said she has been made aware that another young adult, who also has a pump,  is facing the prospect of encountering difficulties of getting it refilled at UHL due to the cost.

She said when Nicole was getting this ITB pump filled in Beaumont Hospital, Dublin an issue never arose concerning refilling it and is at a loss how this could happen at UHL.

She confirmed Nicole is not a new patient at UHL and is already under a pain specialist.

“This is not just about Nicole’s treatment, which is obviously very important to me as her mother. Cathal and I have worked very hard to provide her with the best possible treatment to help her live as independently as possible.

“This experience is a matter of grave concern for other baclofen pump users, who should never be placed in such an invidious position as having to fight for the right to obtain medication.

“In one way, I am lucky, I am on the HSE West Forum and have contacts within the HSE where I can voice my concerns. What about the parents who are not in my position and don’t where to go to if they are faced with the same scenario? I am first and foremost a parent and I will continue to fight to ensure Nicole gets the treatment and care she deserves.

“Why has a problem emerged in UHL when we had no issue with refilling the pump in Beaumont for years?” she asked.

She provided the HSE and The Clare Champion with a signed letter waiving her right for patient confidentiality and giving permission to the authority to “make comment on all information, letters and correspondence” in relation to the “medical care and procedures of her daughter Nicole around the IBT Baclefen pump”.

In a statement to The Clare Champion, a UL Hospitals’ spokeswoman said “for reasons of patient confidentiality we cannot comment on individual patient cases”.

“Any new treatment irrespective of cost has to be identified and approved. A process is in place for this purpose and once there are clear clinical indications of the need to maintain ongoing patient care, the treatment is approved subject to ongoing clinical review,” the spokeswoman stated.