‘Protective’ families can let down Asian patients

by NADEEM BADSHAH

SOME Asian families are hiding the fact that their relatives have conditions such as autism and also prevent them from going out in public, campaigners have said.

Support groups believe there remains a stigma about seeking help for loved ones with learning disabilities and suffering from diseases such as Alzheimer’s due to a “failure” by service providers to engage enough with BAME communities.

Between now and 2030, 25 per cent of new entrants to adult social care with learning

disabilities will belong to ethnic minority communities, according to a report from Lancaster University.

Campaign groups have warned attitudes need to shift among south Asian families to stop them perceiving autism as a “curse”, with some isolating relatives with the condition due to fears for their safety.

Ramesh Verma, founder of the Ekta Project who works with carers, told Eastern Eye: “Our community tends to hide the problem.

“I met one lady who was depressed because her son had autism. She said she doesn’t want to tell anybody.

“He was around 13. I said, ‘What are you going to do when he grows up?’

“She said, ‘People will talk about it. I won’t be able to get my daughter married’ because of the stigma.”

Verma, whose organisation is based in east London, added: “It can happen that they [patients] are not treated properly.

“Some believe it is a curse or because of something they have done in a previous life.

“The material is out there for awareness, but some cannot read English or even their own mother tongue.

“One mother I knew had Alzheimer’s. She was from a rich family who took her away to a mansion outside London. But she was allowed no guests, no family visitors. We didn’t know she was suffering or when she died.”

Among the charities for the BAME disabled community is Include Me Too, run by Parmi Dheensa, which works with 1,500 families a year. The group launched a campaign urging the government to review its duties to special needs education and support for BAME communities.

Saghir Alam, chair of the ADD International disability charity and former commissioner at the Equality and Human Rights Commission, believes “there’s been a bit of a failure from public services engaging communities on what services are available”.

He told Eastern Eye: “Central government doesn’t engage BME disabilities communities

and their carers.

“They [autistic person] stays home, their family are worried about their safety and their son or daughter being harassed or called names by the public.

“They are trying to protect the young person, but are limiting their ability to lead independent lives.

“When they are at school and college, they have peer support. After that they feel isolated as services are not inclusive. For the next 20-30 years, they are living in isolation and they develop mental health issues.”

Mandy Sanghera, a human rights activist and government adviser on disabilities issues, said there still is a huge stigma around disorders like autism in the Asian community.

She said: “Sometimes families struggle with managing complex challenging behaviour. Families don’t do this to be cruel, it’s more about the behaviour [of the disabled person], families worry about how [it could affect] other people.

“We need better support for carers, local authorities and health workers need to support families. Also, education around autism [is important] as families don’t always recognise

it as an impairment.”

Meanwhile, the fourth major investigation into the abuse of patients with autism in care units is set to be launched by MPs.

The Health and Social Care Select Committee is expected to examine the care system in the spring over claims that hundreds of teenagers and young adults are being locked up, forcibly drugged, violently restrained, fed through hatches like animals and injected with drugs to sedate them.

The government is aiming to reduce the number of people with autism and learning disabilities in hospital units by 2024 from around 3,000 patients now.

At one learning disability unit, nearly half of people left to go into privately owned “independent hospitals” between 2016-18, which can include locked rehab placements.

The Royal College of Psychiatrists (RCP) does not accept locked rehab as a type of care.

Rajesh Mohan, chair of the rehabilitation and social psychiatry faculty at the RCP, said: “The facilities appear to be defined by having a locked door rather than the specific type of rehabilitation service they offer.”

An NHS England spokeswoman says it is investing £75 million to improve specialist community support for learning disabled and autistic people. She said: “Treatment and care reviews are in place to ensure the right care and support is provided to help people live as independently as possible and close to their family and friends.”