Disability rights campaigners are calling for new laws to make it easier for single people to choose a person to speak up for them if they become too ill to make their own decisions.
The campaign by Regard – which represents disabled lesbians, gay men, bisexuals and transgendered (LGBT) people – follows the death last month of a woman with ms, whose friends spent two years trying unsuccessfully to enforce her wishes and her right to independent living.
Regard says the Mental Capacity Act treats a person’s nearest relative as their next of kin if they are not married or in a civil partnership. This can mean their wishes are not respected if there is a dispute over their care or treatment.
Regard says this is a particular issue for LGBT people, as they are more likely to experience physical or mental health problems because of homophobia and HIV, are less likely to live in traditional family units and are more likely to live far from their relatives.
Using a lasting power of attorney is too complex and expensive, says Regard, particularly for disabled and older people, and is designed for situations where people have advance warning of poor health.
The Sue’s Law campaign has been named after Sue W, who died this February.
She was estranged from her family and had no long-term partner. After being treated in hospital for an infection at the age of 50, she was moved to a care home for older people, against clear instructions she had made in a living will.
Despite having appointed a friend to make decisions on her behalf, the authorities refused to contact her friends – who had no legal status – and passed responsibility instead to her estranged father.
Her friends then failed with an application to the court of protection, because they could not afford legal representation.
Regard and Sue’s friends campaigned for two years to move her to the hospice of her choice, but this only happened last September when her father finally dropped his opposition.
Regard said the case shows the law should be changed to allow single people to name their next of kin via a simple legal declaration.
Julie Newman, acting chair of the United Kingdom Disabled People’s Council and a Regard member, said Sue’s friends were “totally distraught” at what happened because “not only was Sue rendered powerless but they were as well”, even though she had “taken meticulous care to ensure that she could determine her life choices as her impairment progressed”.
She said: “The UK needs to make good the rhetoric about a fair and equitable society.
“It is neither fair nor equitable to place people against their will into situations which ultimately amount to incarceration.”
A Ministry of Justice spokeswoman said that every adult should consider making a lasting power of attorney, to choose someone to act for them if they ever become unable to make decisions for themselves. She said new, simpler forms were launched last October.
And she said that decisions regarding the appointment of a deputy to make decisions about a person’s property and affairs were “entirely a matter for the courts, based on the individual circumstances”.
But Newman said the new forms were still “quite complex” and “very costly” and applying to the court of protection was impossible for those who were seriously ill or did not have much money.
She added: “The errors that occurred in managing Sue’s case are not unique. Surely it is in everyone’s best interest to have a standard, affordable way of designating who is empowered to make critical decisions during life threatening events.”
17 March 2010