'There are others like us': Government considers changing Mental Capacity Act

Care Minister Stephen Kinnock told ITV News the government will consider amending mental health legislation currently going though Parliament, as Political Correspondent Romilly Weeks reports

The government is considering changing the law to give families the right to request a mental capacity assessment for a vulnerable loved one, ITV News can reveal.

Care Minister Stephen Kinnock held a meeting with cross-party MPs and Fiona Laskaris, a mother who has spent years fighting for the change in law that she believes could have saved her autistic son.

Christopher Laskaris was 24 years old when he was murdered in 2016 by a convicted criminal who had been exploiting him.

Fiona was repeatedly dismissed for years when she tried to get her son a mental capacity assessment, which establishes whether someone has the ability to make decisions about their own safety and wellbeing, and helps determine what support they may need.

"The law as it stands didn't enable me to save my son's life, even though I'd been asking for a proper mental capacity assessment. There was no mechanism for me to do that," Fiona said ahead of the meeting.

"So we want to change that. We've got a good amendment lined up and I think it'll probably work. I really, really hope the government will support getting this amendment through so that no one else has to go through what we have."

Since ITV News aired Fiona's story and the prime minister's subsequent pledge in the Commons to "look into" the law change, we have been contacted by other families also battling to get mental capacity assessments. Due to the issue being underreported, many said they didn't realise they were not alone in their fight.

One mother said she "sobbed uncontrollably", adding: "I thought, there are other people like us."

If you have been affected by this issue, you can contact yourstory@itv.com

Following the meeting on Wednesday, Care Minister Kinnock told ITV News the government will now consider amending mental health legislation currently going though Parliament.

He said: "Mrs Laskaris has absolutely made her points - we absolutely see where she's coming from. Officials will be now taking forward those discussions in greater detail.

"Mrs Laskaris has proposed an amendment to the bill. We will absolutely be examining that in greater detail, looking at the purpose of the amendment, but also what effect it might have just to ensure that there aren't unintended consequences."

'Losing a child is the worst thing that can happen to anyone, but I think a preventable death is the very worst,' Fiona Laskaris previously told ITV News.

Watch Romilly Weeks' report:

What is the Mental Capacity Act and how could the law change?

The Mental Capacity Act was introduced in 2005 in a bid to minimise the number of vulnerable adults being detained unreasonably and indefinitely, and to give them more autonomy over their own care.

It states that as a starting point everyone should be presumed to have the capacity to make their own decisions about their own safety and wellbeing, and that assessment should be carried out if their capacity is in doubt.

However, research has found that such assessments are either not carried out enough or are not carried out effectively in particular on autistic people, adults with learning disabilities or those with mental health issues, such as bipolar and schizophrenia.

Their insistence that they can cope is often taken at face value without considering their past history and relatives’ concerns. This means that - as in Christopher Laskaris' case - they are left without the support they need.

Fiona and three MPs - the former health secretary Jeremy Hunt (Conservatives), Chris Coghlan (Lib Dems) and Jake Richards (Labour) - are calling for an amendment to the Mental Capacity Act to ensure family members' views are taken into account when deciding if someone needs a mental capacity assessment.

They, along with the National Autistic Society, agree the current system is failing autistic adults like Christopher, as well as other adults with learning disabilities and mental health illnesses - at times with catastrophic consequences.

They are concerned there are potentially hundreds of preventable deaths per year due to this issue, with recent research finding The Mental Capacity Act was not followed in a quarter of the deaths of autistic people and those with learning disabilities in 2022 alone.

Barrister Ian Brownhill, who's a specialist in mental capacity, said decisions around capacity are a problem the courts see time and again.

"The issues are vast," he said. "Sometimes it can be something like a predatory marriage where somebody targets someone because they want to get access to their finances. In other cases it's more insipid - it might be something like a drug dealer, or cuckooing, and things like that.

"All of these issues start to come to the fore. And one of the key issues in them is whether or not that person has the mental capacity to make a variety of different decisions for themselves in their life."

'I believed he would die'

One mother told ITV News that her autistic son has been sectioned after deteriorating for years because the authorities judged that he had capacity to decide that he didn’t need any support.

Parveen's son would spend day and night in bed not eating or drinking and fought for years to try to get him a mental capacity assessment in the hopes that it would get him the help he desperately needed.

"They were assuming he's got capacity and therefore, it's his reasoned decision - if he doesn't want help, he doesn't want support, that's fine by us," she said.

"Even though I was providing evidence that that's not the case. He's not well. He doesn't understand the consequences of this. There's no way on earth he would just lie in bed day and night like this deteriorating of his own choice.

"I genuinely believed that he would die because he was just being left for months at a time with no support."

Asked how she felt when she heard Fiona's story, Parveen said: "I just cried uncontrollably because every quote I read, it was almost like I was telling our story. Those very same things about being dismissed as an over fussy parent - stop interfering, he's an adult, he can make his own decisions.

"People would come in and see him in this completely sick state - lying in his bed withering away into this tiny form - but they wouldn't do anything."

She added: "As I was reading this [Fiona's] story... I thought, there are other people like us. This tragedy has happened and services could've stopped this from happening. Fiona had raised this time and time again, like I have over 12 years for my son."

'I'm hopeful this terrible thing that happened to Christopher can bring something positive'

Fiona and MP Chris Coghlan remain hopeful following the meeting with the government and await to hear next steps.

Coghlan said: "We feel we need to see it in legislation because only then will lives be saved. And frankly, Fiona's family hopefully can then finally start the grieving process and feel that some small piece of hope has come out of what happened."

Asked what it would mean to her if the law was passed, Fiona said: "Oh, it would just mean so much to know other people wouldn't have to go through this."

After years of fighting for justice for her son's death, Fiona said she finally feels like her voice is being heard.

"It's incredibly cathartic for me - just being listened to. Shouldn't be like that though, it shouldn't take eight years and an ITV crew to just get what's in the Care Act."

She added: "Clearly everyone's in agreement that the status quo is not okay. So I'm really hopeful that this terrible thing that happened to Christopher can bring about something positive."

To hear more about Christopher's life and the Mental Capacity Act, listen below to the podcast episode titled: 'The mum fighting for a law change after her autistic son's murder'...

If you have been affected by any of the issues raised in this article, help and support is available:

• Samaritans is an organisation offering confidential support for people experiencing feelings of distress or despair. Phone 116 123 (a free 24-hour helpline).

• The National Autistic Society offers free help and guidance for autistic people or anyone supporting someone who is autistic. Anyone who needs urgent support can find information here.

• Bipolar UK offers free support to anyone affected by bipolar. If you need urgent help, phone their helpline on 0333 323 3880.

• Access Social Care provides free legal advice and information for people with social care needs and helps them to achieve a better quality of life.