Tonio pleads for reconsideration of request for UK test

"I cannot afford to put my life on hold..."

Tonio Mercieca, who was paralysed from the chest down after a diving accident 25 years ago, is appealing to health authorities to reconsider his request to go to the UK for an ergonomics assessment which is not available in Malta.

Earlier this year, Tonio's plastic surgeon had recommended that his patient needed a postural seating assessment (ergonomics) to "identify the pressure source that was causing the recurrence of ischial ulcers".

However, Tonio said he was recently verbally informed that the request had been rejected on the basis that there were plans to set up an ergonomics unit in Malta.

"I have never been told when or how this unit will be set up and I cannot afford to sit and wait and put my life on hold until the unit is eventually set up," Tonio said.

When contacted, a health ministry spokesman said that the treatment abroad advisory committee had discussed the issue of specialised wheelchair services in Malta.

However, this committee, which advises the government on which cases are to be referred abroad for treatment, "felt that the provision of such a service was outside its scope and competence".

"The committee felt that this issue had major implications and required policy decisions linked to what are the entitlements under the national health services and under the Social Security Act for people with a disability requiring special wheelchairs," the spokesman said.

"The health division does provide basic good quality wheelchairs. However, providing specialised wheelchairs in special cases implies a substantial financial burden, which must be sustained over time to be truly effective.

"The government, the Commission for Persons with Disability and the various non-governmental organisations need to discuss the balance between services in cash and services in kind to ensure that monies disbursed and service provided for sustaining independent living are being utilised appropriately."

But in the meantime, Tonio feels that while the government speaks of inclusion, people like him are not always provided with the right tools to be able to fully integrate into society.

Tonio, whose life changed overnight when he was 14, has managed to learn to overcome his disability and establish his own life, get a job and establish a circle of friends - against all odds.

However, his daily routine was turned upside down when towards the end of last year a huge pressure sore developed on the right side of his buttocks, due to the long hours he spent in his wheelchair.

After spending six weeks in bed the ulcer healed, but re-opened once he was back in his wheelchair and had lost its ability to heal. A plastic surgeon recommended a muscle transplant to cushion the area of the sore between the bone and the skin.

Although the operation itself was a success, once he attempted to get back to work at the diabetes unit at St Luke's Hospital, the situation recurred and he was back in bed.

Since the beginning of the year, Tonio has only been able to work for a few weeks. And when he does go, he has to spend the rest of the day in bed - he was slowly relinquishing his life and becoming a prisoner in his own bed.

After his plastic surgeon made the recommendation for the assessment, Tonio spoke to the head physiotherapist at the Spinal Unit of Boffa Hospital to determine if such assessments could be made in Malta.

It was concluded that his serious problem could only be assessed at the National Spinal Injuries Centre, Stoke Mandeville in the UK, so recommendations were made to the health authorities to send him.

However, when the request was rejected Tonio became desperate and started scouring the internet to see what he could do in the interim.

He eventually discovered how a specially designed power wheelchair could solve most of his problems because it tilts back at the touch of a button to help shift the weight onto his back, alleviating the pressure from his buttocks in the process.

Though the wheelchair cost Lm3,500, Tonio took the plunge and ordered it, even though he had no money.

Two weeks ago he made an appeal in The Times and his prayers were answered after several individuals and organisations came forward and pledged to donate over Lm1,900 towards his cause.

Tonio was overwhelmed and moved beyond words by the extraordinary support he had received. However, he feels he will not be able to get the maximum benefit from the wheelchair without the necessary ergonomics assessment.

"I am sure the wheelchair will alleviate most of my problems, but to optimise the use of the wheelchair I need the assessment," Tonio said.

"I am appealing to the health authorities to reconsider their decision. I want to be given the chance to get on with my life and lead a productive, inclusive life without being a burden on others," he said.

Tonio's case is being supported by the National Commission for Persons with Disability, which feels that he makes an immense contribution to the advancement of disabled people.

In a letter to the consultant orthopaedic surgeon at St Luke's Hospital, commission chairman Joseph Camilleri wrote that Tonio formed part of the Disability Issues Team and has been a regular speaker over the past eight years.

"Besides the intrinsic value which each and everyone of us has, Tonio is also valuable within our resource-hungry sector," he said.

"Therefore, any and every effort that can be made to help him maintain his independence and even to improve his quality of life would be very much appreciated."