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HEALTH

The mother on hunger strike for her daughter

French mum Jacqueline Tiarti is into the 11th day of a hunger strike. If she continues she could soon be in a coma. Here she tells The Local how her fight for a better life for her 7-year-old autistic daughter has driven her to such extreme action.

The mother on hunger strike for her daughter
Mother Jacqueline Tiarti, who is on hunger strike to fight for more support for her autistic daughter Melissa, aged 7. Photo: Jacqueline Tiarti

Who is Jacqueline Tiarti ?

She’s a 29-year-old mother of a 7-year-old girl with autism, who lives in the suburbs of Paris.

Why is she in the news this week?

On Friday, she entered the 11th day of a hunger strike, in protest at what she sees is the failure of France’s Health Minister, Marisol Touraine, as well regional authorities in the Paris area to respond to her pleas for adequate and appropriate help for her 7-year-old daughter Melissa, who has autism. The hunger strike, which is putting her life in danger, is also to protest against the methods used in France to treat autistic children.

How is her health?

Not good, it would seem.

“I’ve been on hunger strike since July 9th, and I’ve lost 4 kg already. I’m beginning to feel very weak. My health is really suffering,” Tiarti told The Local this week.

“I just spoke to my doctor, who told me that if this continues, I could go into a coma.”

Asked whether she was willing to go that far, the defiant mother replied: “I don’t know. But I know the risks of  what I’m doing, and I’m very determined,” she added.

“I’m here to show the [French] state the decline in my health, so that they’ll start to pay attention to the health of our children,” she said.

What exactly does she want?

Mainly she wants to have access to Sessad (special education service and home help services) which would provide a specialist teacher, trained at working with autistic children, who would come to their home.

She has been on a waiting list for two and a half years, but it seems she is no nearer being granted the help she desperately needs.

The problem she faces in trying to obtain the specialist care stems from the way French authorities approach children with autism.

The treatment of autism in France is highly controversial. In many other European countries, and especially in the United States, autism has for years been treated with behavioural and educational approaches.

There, children are given a rigorous system of reinforcements, aimed at trying to modify their behaviour and help them integrate into society and develop independence.

“Behavioural therapy for autism is scientifically proven, and it really works. In France, on the other hand, its all about psychoanalysis,” Tiarti explains. “And psychoanalysts in France don’t believe that children with autism can play a part in society. They would rather put our children in psychiatric hospitals.”

“France is 40 years behind when it comes to this," she said.

Daniel Langloys, president of the organisation Autism France told Ouest France newspaper: "Psychoanalysis sees autism as a psychosis, an unconscious choice, and it blames parents. It doesn't give children the tools they need  to communicate."

Due to the dominance of psychoanalysis, there is a severe shortage of French behaviour specialists, hence the fact she has spent two and a half years on a waiting list.

Parents like Tiarti face an uphill struggle, first of all to get a diagnosis of autism for their child and then to persuade health authorities to give them the funding they need, in order to pay trained behavioural specialists to work with their children.

“We have to fight hard to even get our children educated,” said Tiarti. “The staff in schools are not properly trained to work with Melissa, and so children like her are very often badly cared for.”

“And our situation isn’t exceptional. I’m not unique,” she added.

Is her hunger strike working?

Well, Tiarti says she hasn’t yet heard back from the ministry of health, or the regional authorities for Ile-de-France, but public support for her struggle is growing.

Elle Magazine in France, as well as regional news site Ouest France reported on her hunger strike as did many national news sites on Friday. A Facebook support group set up on July 10th had more than 850 followers on Friday.

On the Facebook page, other exasperated parents of children with autism have shared their own experiences, many of which have been similar to Tiarti's. "I have two children with autism, and I had the same problem last year," said one woman.

"I tried to kill myself in a doctor's office, to show my despair," the woman added.

Tiarti’s supporters have planned a public protest in solidarity, to take place on Saturday at 3pm at the Rond Point on the Champs Elysées in Paris.

At the moment no one, not even Tiarti herself, knows how this story of one frustrated mother's battle for better care for her daughter, is going to end.

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HEALTH

Lengthy waiting times at Danish hospitals not going away yet: minister

Danish Minister for the Interior and Health Sophie Løhde has warned that, despite increasing activity at hospitals, it will be some time before current waiting lists are reduced.

Lengthy waiting times at Danish hospitals not going away yet: minister

The message comes as Løhde was set to meet with officials from regional health authorities on Wednesday to discuss the progress of an acute plan for the Danish health system, launched at the end of last year in an effort to reduce a backlog of waiting times which built up during the coronavirus crisis.

An agreement with regional health authorities on an “acute” spending plan to address the most serious challenges faced by the health services agreed in February, providing 2 billion kroner by the end of 2024.

READ ALSO: What exactly is wrong with the Danish health system?

The national organisation for the health authorities, Danske Regioner, said to newspaper Jyllands-Posten earlier this week that progress on clearing the waiting lists was ahead of schedule.

Some 245,300 operations were completed in the first quarter of this year, 10 percent more than in the same period in 2022 and over the agreed number.

Løhde said that the figures show measures from the acute plan are “beginning to work”.

“It’s positive but even though it suggests that the trend is going the right way, we’re far from our goal and it’s important to keep it up so that we get there,” she said.

“I certainly won’t be satisfied until waiting times are brought down,” she said.

“As long as we are in the process of doing postponed operations, we will unfortunately continue to see a further increase [in waiting times],” Løhde said.

“That’s why it’s crucial that we retain a high activity this year and in 2024,” she added.

Although the government set aside 2 billion kroner in total for the plan, the regional authorities expect the portion of that to be spent in 2023 to run out by the end of the summer. They have therefore asked for some of the 2024 spending to be brought forward.

Løhde is so far reluctant to meet that request according to Jyllands-Posten.

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