Luke Simpkins (Cowan, Liberal Party) Share this | Link to this | Hansard source

Today I raise the issue of the Martinet family of Noranda, a suburb in the electorate of Cowan, and the tragedy that has befallen Mrs Damiana Martinet. On 30 March 2007 Damiana underwent a straightforward operation to remove a brain tumour. She awoke well but some hours later developed a haemorrhage in her brain stem and cerebellum which caused her to become unconscious. According to neurosurgeon Dr Emil Popovic, Damiana has a devastatingly severe neurological deficit—in other words, she can do nothing for herself, not even breathe. She can apparently hear and understand everything but all she can do is blink her left eye. Her condition is called locked-in syndrome, and I imagine that it would be hell on earth. To be able to understand yet not be able to move or talk, to be able to feel an itch but not be able to scratch it—it is hard to imagine anything that is worse than this.

The tragedy is not only Damiana’s story but also that of her husband, Alain, and daughter, Patricia. Both are now full-time carers. Alain, who is in his 50s, gave up his job as a sales manager, and Patricia, who is in her 20s, gave up a promising career as a junior corporate lawyer. They have no social lives; they have only a routine of looking after Damiana 24 hours a day and seven days a week. Every three hours, day and night, Damiana must be turned. The care she receives at home ensures that she does not suffer constant chest infections, airway blockages, pressure sores or bladder infections. In hospital the care was never constant and Damiana suffered from all these problems. She has been breathing via a tracheotomy tube since April 2007. The cost to the family of consumables is $40,000 per year. With the support of the state government and the family, the cost of home carers and domestic help is around $200,000 per year as well as the disability pension, two carers pensions and a carers allowance. This all demonstrates that care for Damiana constitutes a significant amount of money.

The alternative that the Martinet family are seeking is treatment by the Special Access Scheme. They seek access to unapproved therapeutic goods in the form of treatment by Dr Geeta Shroff of India. Dr Shroff has offered to come to Perth and personally deliver treatment using stem cells. The family submitted an application under the Special Access Scheme, category B, seeking permission to have the treatment here. On 10 October, the family’s application was rejected; however, the neurosurgeon will apply again under category A, which deals with terminal illness or the likelihood of premature death. This is the Martinet family’s one hope for any sort of future.

Any improvement in Damiana’s life will greatly help the family and I ask the Minister for Health and Ageing to do what she can to assist this family. I recently wrote to the Minister for Health and Ageing and I also spoke to her last week to seek an appointment. I now have a meeting with the Parliamentary Secretary to the Minister for Health and Ageing in November. On behalf of the Martinet family, I again strongly urge the minister to assist.