One journey too far for a campaigning mother

Each weekday Susan Maher would get up at 4.30 a.m

Each weekday Susan Maher would get up at 4.30 a.m. to drive her son from their Kilkenny home to Dublin for sign-language classes. On their return journey last Monday, she died when the car left the road. Can we not provide such essential services locally, asks Kitty Holland

We can't wait for Christmas, said Susan Maher this time last year in a newspaper interview about her son's progress after surgery for a hole in the heart. "We really never dreamt that Bobby would be able to join in the festivities as much as he can. The operation and recovery were an absolute miracle. He's absolutely flying it, bar his speech and language difficulties," she told the Irish Examiner.

Last Monday night, Susan and Bobby (5) were seven miles from their home in Kilmanagh, Co Kilkenny. She had been attending a course at the Centre for Deaf Studies at Trinity College in sign language and interpreting. He had been at a course in sign language too, for deaf children, in Cabra.

Sometime after 9 p.m. Susan lost control of the Nissan Serena people-carrier she was driving. It is thought she may have fallen asleep, having been up, as usual, since 4.30 a.m. The vehicle veered off the main Callan to Kilkenny road, skidding into a ditch and landing, upside down, in a swollen stream. The mother of six died at the scene.

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Bobby was strapped into the back seat and, despite spending almost an hour there in darkness, with freezing water flowing through the vehicle, he survived the ordeal. He is said to have been "beside himself", suffering from hypothermia by the time emergency services rescued him. He was taken to St Luke's Hospital in Kilkenny and discharged on Tuesday.

Bobby was born with a condition called Fallots tetralogy, otherwise known as a hole in the heart. In 2000 he underwent a nine-hour operation at the Westmoreland Street clinic in London, to repair his heart.

That he got there, and got over the operation, is a tribute to the determination of his mother. Originally from London and a former policewoman, Susan moved to Kilkenny to marry Michael Maher 14 years ago. The couple had six children, aged now between three and 13. She is said to have been the "lively, energetic, outspoken" one, Michael is described as "a very quiet, gentle man".

Perhaps unsurprisingly, she came to national prominence two years ago with her tireless work as secretary to the Children's Heart Care Action Group, established to send Irish children to Britain for life-saving cardiac surgery. She helped raise more than £100,000, enabling the group to send Bobby, as well as other children, to Britain.

Teresa Mullen, a family friend and spokesperson for the group, described Susan's "tremendous ability and talent". "Susan repeatedly voiced her anger to health Minister, Micheál Martin over why she and other mothers were obliged to travel to Dublin for health services not provided at regional level." Two years ago she met the Minister. It was reported she was assured that lack of funding would not be an issue with regard to providing speech and language therapists or interpretative facilities for deaf children in the area.

As well as cardiac difficulties, Bobby has 60 per cent deafness in both ears and consequent language development difficulties. He has required intensive speech and language therapy since the operation. For a time he got such help in Kilkenny. Fine Gael leader Enda Kenny said in the Dáil this week that a lack of adequate speech therapy services in the Kilkenny region had forced Susan into a "gruelling" schedule, of rising at 4.30 each morning to travel to Dublin for a sign language interpretative course, not getting home until after 9 each night. The South Eastern Health Board, however, insists there is a full complement of 13 sign language therapists in the Kilkenny/Carlow area.

"The maximum waiting time for an assessment is three months," said a spokeswoman, "and then the length a child will have to wait to start with a therapist depends on whether they have been assessed as acute, urgent or non-acute."

Bobby got speech therapy for a time but is currently taking part in a pilot sign-language programme for deaf children, run by the Department of Education, in Cabra, Dublin. Susan was also learning sign language and due to graduate in May. She was, in the words of her friend Teresa Mullen, "Bobby's lifeline to the outside world.

"It was Susan who understood his sounds, who knew what he was trying to communicate. They had a very special relationship. Poor Bobby will feel her loss very keenly," she says. It is perhaps pointless to speculate what might be were there "adequate" speech, language and interpretative services closer to the Maher home.

What is clear, however, is that a deficit of speech therapists - and occupational therapists and physiotherapists - throughout the State is forcing hundreds of parents like Susan and Michael to choose between watching their children fall further behind where they should be or travelling long distances to get the services they need to fulfil their potential.

Jack Wall, Labour TD for Kildare South, who has tabled parliamentary questions on the issue, said during the week: "These parents will walk on hot coals if they have to, to get what their children need. They'll travel anywhere, do anything. But they are being frustrated by a Government that has displayed a lack of planning, lack of cohesion in its thinking."

The Department of Health and Children does not keep figures on how many speech and language, occupational and physiotherapists are needed throughout the State.

However, the Bacon Report - commissioned by the Department - said in July 2001 an increase of 350 per cent in the number of speech therapists was necessary for an adequate service. It also said physiotherapist numbers must be doubled and occupational therapist numbers increased by 150 per cent.

According to Kevin Callinan, national secretary of the Health and Welfare branch of IMPACT, if anything, the numbers have gone down. "And bear in mind the Bacon recommendations were made before commitments of the National Health Strategy and before the primary health care teams were envisaged, which would increase demand for these services. There's a big case for the Government to answer on its failure to co-ordinate training and need . . . There have been a series of reviews which have been an exercise in long-fingering actually doing what's needed," he says.

One such review, he points out, recommended 50 clinical psychologists be trained each year. This year two have been trained.

Two years ago, it was recommended that 600 social workers be trained and recruited. "We still have a crisis in the social work sector," Callinan adds. "The boom has been wasted. There has been a complete dereliction of duty at Cabinet level - mickey mouse tinkerings here and there, but nothing radical."

The Department of Education points to its announcement in May of the provision of 175 new therapy training places in speech, physiotherapy and occupational therapy training.

Meanwhile, the Northern Area Health Board has been recruiting, on behalf of all the health boards, between April and October this year. Some 106 people were recruited in South Africa, Australia and Britain, to work in the three therapy sectors and in radiography. Just 17 of these, however, are speech therapists. A spokesman for the board says there is a "worldwide" shortage of speech therapists.

Before she died, Susan wrote on several occasions to the Minister for Health, Micheál Martin, asking that sign language interpretive facilities be made available in the south east.

In Wednesday's Budget, an embargo was put on the recruitment of personnel into the health service.