At the High Court in London, Rosa Monckton MBE, 65, said yesterday she wanted to challenge how courts applied the rules contained in the Mental Capacity Act.

Her daughter Domenica, who was Princess Diana’s godchild, has Down Syndrome, but because she is now 24, Mrs Monckton says she has lost the sole right to make decisions about her daughter’s care.

She argued that many parents in similar situations were either not consulted or ignored, leading to officials taking decisions instead.

She said: “Domenica mentally still functions very much like a child.

“In many cases, when assessments of their capacity and best interests for these life-changing decisions are made, parents are unaware, not invited or even asked not to be in the same room. I do not understand why it should be necessary for me, a responsible and loving parent, to have to go to court and show that our case is exceptional for the right to do what is best for my child.”

Mrs Monckton said the situation was in stark contrast to her eldest daughter, Savannah, 27, who sat down with the family to discuss which university she should go to.

She has two daughters with husband Dominic Lawson, 62.

The couple, from Brighton, along with two other families, from London and Windsor, are seeking a change in the law to make it easier for parents to be granted a deputyship to deal with their children’s affairs under the Mental Capacity Act.

This case is just not about Domenica but for all those parents who don’t have a voice, yet who are united in the extraordinary love they have for their children and who know, better than any organisation, what is right for them

Rosa Monckton

Mrs Monckton said: “I have spoken to hundreds of parents who have told me about the terrible decisions that the courts have made because they don’t know the person in question. This case is just not about Domenica but for all those parents who don’t have a voice, yet who are united in the extraordinary love they have for their children and who know, better than any organisation, what is right for them. Let compassion and common sense prevail.”

Yesterday, Mr Justice Hayden began analysing the case, which is expected to last a week.

Barrister Victoria Butler-Cole QC, for the group, said there was “currently confusion and a lack of clarity” about what approach judges should take when considering who should make decisions on behalf of “young adults” with learning disabilities.

Alex Rook, partner at law firm Irwin Mitchell, also representing the families, said that at present, parents only got a say in the most exceptional of cases.

“We have heard many first-hand accounts about how parents feel sidelined and powerless to help their children when they turn 18,” he said.

The case continues.

Last year, on the 21st anniversary of Diana’s death in a car crash in Paris, Mrs Monckton tweeted a picture of her laughing.

She captioned it: “Diana as I remember her.”

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