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A right to an ordinary life is what many carers say they want. A right to see family and friends, a right to an occasional break, a right to look after their own health needs, a right to consider paid employment. This wish list is so ordinary, and yet these are the very rights that carers say are denied them. Carers UK hears from carers who, when asking for support services, are told ‘there’s no money’ or ‘we don’t provide that service’ or ‘you’ve already had your share’. Carers can feel like they have little choice but to accept these responses, often with devastating consequences for their own health and wellbeing.
Carers, like everyone else in the UK, are entitled to rely on the
protection of the Human Rights Act 1998, which should ensure that
public bodies take account of their human rights when they provide
services. Public services play a critical role in guaranteeing carers'
human rights. They can ensure that carers have the support they need to
maintain a normal life. However, a new report commissioned by Carers UK
shows that reality falls a long way short of this ideal.
There are several articles of the Human Rights Act in which Carers UK believes carers' rights may be being violated. These are:
The right to life may seem extreme, but Carers UK research has
uncovered carers who have to delay urgent medical treatment because of
inadequate support.
The Human Rights Act Article 2 gives the right to have one’s life
protected by law. Carers such as Helen (see story on right) are forced her to choose between their
own health, and ensuring that the person they care for is not left
with serious health implications. Given the seriousness of both Helen’s
and her husband’s health problems, the choices she was forced to make
could have been life-threatening for either of them.
Carers also have a right to be free from inhuman or degrading
treatment. Many carers are pushed to the brink of physical and mental
collapse because of the lack of support they receive, yet public bodies
should take steps to prevent this. Case law indicates that it can be a
violation of someone's human rights if they are treated differently
because of their situation; and yet a carer awaiting surgery for a
serious back problem was forced to continue to help her daughter shower
after the local authority withdrew two care staff who had previously
provided help (an assessment said it was too risky for the health of
their backs). An adapted shower would have helped, but the waiting list
was a year long. This example demonstrates the potential for common
interest between the disability rights movement and
carers'organisations to challenge poor practice and restrictive
attitudes to health and safety that do not adequately consider service
users' rights.
The human rights of carers have been ignored by public bodies for
too long.Carers who face violations can challenge them in the courts.
But Carers UK would like to see measures that support carers' human
rights, so they do not have to resort
to court battles. We would like new legislation that prevents
discrimination against people with caring responsibilities, that gives
guidance to health and social service providers to ensure that they are
clear about their responsibilities, and information on carers' rights.
As a first step, there should be an investigation into whether the
Human Rights Act is being correctly applied.
A right to an ordinary life cannot be too much to ask for.
Helen cares for her husband, Robert, who has had Multiple Sclerosis
for 30 years.His condition has worsened in recent years – he can no
longer sit or stand up and uses a powered wheelchair. He needs feeding
and round-the-clock care. Helen gave up work to care for Robert.
Helen’s own health was put at serious risk one weekend when she
returned home following an operation for a heart condition. Helen
needed complete rest but was
informed by social services that she had used up all the respite care
available for Robert while she was in hospital having the operation.
They told her she must resume being a 24/7 carer immediately.
Helen was forced to spend several days battling with the local authority for help - at a time when she had been told to rest by her doctors following her major operation. This could have held very serious implications for Helen’s long-term health. Eventually,extra respite care was secured, but at an additional financial cost to Helen.
