Sue's Law: 'Love is stronger than blood'
If you were deemed to be too frail or unwell to make decisions for yourself, would you want your nearest and dearest to make the decisions for you? Would you want the person or people who know you best to ensure that your wishes are carried out? And if you are not in a legally recognised relationship, do you expect to be able to decide for yourself now exactly WHO your nearest and dearest are?
Sue W, who died in February 2010, had been estranged from her biological family for many years and had no long-term partner, but like many LGBT (and other) people, Sue had a close and loving family of friends. After developing MS, Sue thought she had made all of the arrangements necessary to ensure that she spent her final years in the way that she wished. Sue bought and adapted her ideal home, drew up a Living Will and Last Will & Testament with the help of a solicitor, and appointed a friend to make health care decisions on her behalf. Sue also ensured she moved close to a specialist care home for people with MS, which she used for periods of respite and intended to move into if she became unable to live at home. Then she continued to lead an active and happy life, living independently with the support of care workers.
However, after entering hospital with an infection unrelated to her MS, Sue was forcibly removed from the ward and taken to a Christian old people’s home in a town miles away, deemed to be mentally incapable of making her own decisions. Her wheelchair was taken away on ‘health and safety grounds’ and never returned to her, leaving her confined to bed. Sue, of Jewish heritage and Buddhist leanings, was aged just 50. Although the authorities had Sue’s phone, her address book and her Living Will, her friends were never contacted and took months to locate her, and Sue’s wish to be in her preferred care facility was ignored. In the meantime, legal responsibility for Sue was passed to her estranged father, who was also given control of her finances despite not being named in her will. According to the Mental Capacity Act, as Sue did not have a legally recognised partner, her nearest biological relative was given complete control over her future. Despite all of her careful arrangements, Sue’s friends had no legal status at all. They were denied access to many complaints procedures on her behalf; and at one stage attempts were even made to ban them from visiting her.
Sue’s friends and Regard campaigned for two years to free Sue, a campaign that encompassed everything from the local authority and primary care trust complaints procedures and the relevant Ombudsmen to the Equality and Human Rights Commission, the Commission for Social Care Inspection and the Court of Protection — all to no avail. Sue was only moved to the hospice where she later died after her father finally dropped his opposition, by which time he had also binned her possessions and sold her home.
We believe that everyone not in a legally recognised relationship should have the right to define who is closest to them. There is no legal definition of ‘next of kin’, which is why the Mental Capacity Act uses the ‘nearest relative’. We believe that the law should be changed to allow ‘single’ people to name their next of kin via a simple legal declaration.
Sign the petition at http://petitions.number10.gov.uk/SuesLaw/
FAQs about Sue’s Law
Why does this matter? Anyone can suddenly become so unwell that the authorities consider them to be incapable of making their own decisions. Often this happens when a dispute arises between the ill person and the authorities over what care and treatment they receive. If no one who knows you well has the power to intervene, your wishes are unlikely to be respected. And in today’s world, the person who knows you best may not be a relative — if indeed you still have close family alive. Also, if your parents or siblings are elderly or frail themselves, they may not be able to represent your wishes adequately — or you may not want to burden them with the necessary decisions. An adult can legally emancipate themselves from their biological relatives through marriage or civil partnership. We believe that ‘single’ people should have the same right. The current arrangements for Lasting Power of Attorney are too complex and expensive to be accessible or suitable for most people’s needs, particularly but not only for disabled and older people, and are designed for situations where people have advance warning of ill health.
Is this just an LGBT issue? No. It affects everyone who is not living in a legally recognised relationship. However, LGBT people are more likely than others to experience physical or mental health problems because of the impact of homophobia and HIV. LGBT people are also less likely to live in traditional family units and are more likely to live a considerable distance from their biological families. All of this means that LGBT people are more likely to use social and health care services than others. LGBT people are also more likely than others to make different lifestyle choices to the ones that their biological families would make for them.
I have close family and get on well with them, so why does it affect me? The Mental Capacity Act defines ‘nearest relative’ very clearly, starting with parents. If your parent or parents are elderly, you might prefer a sibling to be your next of kin. Or you might want one sibling to be your next of kin but not want your other sibling to be involved. Or you might want to ensure that your family have the support of a friend or non-legally recognised partner when deciding on treatment and living options on your behalf.
How would it affect inheritance? We are not proposing that this affects inheritance laws. Rather, we are saying that, if you can decide whom to leave your money to when you die, you should certainly be able to decide who has the right to influence your lifestyle, care and treatment while you are still alive.
How would it affect carers? Many disabled and older people, particularly but not only LGBT people, have unpaid carers who are not their partner or their nearest biological relative, but who know them better and are closer to them than anyone else. This would enable people to nominate their carers as their next of kin if they wished.
Could I nominate more than one person? This will be up to the Government, but we think you should be able to nominate up to three people. This would enable people to appoint a combination of relatives/friends if desired.