Today, 21st November, is Carers Rights Day and our Human Rights Lead Jacqui Graves highlights the rights of carers looking after people with life-limiting conditions and how they can ensure their rights are respected and protected.
The human rights of carers are protected under UK law through the Human Rights Act 1998.The Act imposes duties on the state and those who provide services to ensure that carers and the people they care for are treated with fairness, respect, equality, dignity and enabled to make the decisions that are right for them (given autonomy).
Many carers are unaware of how human rights relate to issues faced by them in their caring role. Carers should not be put in a position where their life, dignity or their sense of self-respect are put at serious risk.
What human rights relate to carers?
The following rights are likely to be especially important to carers in their caring role:
- The right to respect for private and family life, home and correspondence (Article 8)
- The right to be free from torture, inhuman and degrading treatment (Article 3)
- The right not to be discriminated against (Article 14)
- And in extreme circumstances, the right to life (Article 2)
Knowing their rights and knowing who is responsible for ensuring their rights are protected means carers can hold service providers responsible for their actions (or lack thereof).
Can you give examples of how carer’s rights might be affected?
Let’s say that a carer experiences poor health as a result of not being able to get to the GP for themselves because of their caring responsibilities, or because caring means they have few opportunities to socialise. Perhaps the person they are caring for is moved into a care home far from where they live.
Any of these scenarios could seriously impact on their private and family life and could constitute a breach of their Article 8 rights. And while Article 8 can be restricted, it can never be taken away or ignored completely and any restriction has to be carefully justified by those responsible.
Here’s a case study of how a carer’s right to be free from torture, inhuman or degrading treatment might be affected because they suffer severe physical illness as a result of caring, when the authorities know about this:
Jane is waiting for surgery for a serious back problem but is forced to continue to help her husband shower, even though it puts her at risk of permanent back damage. Jane is forced to do this because her local authority withdrew the care staff who had previously provided help after an assessment said it was too risky for the health of their backs. Jane has been on the waiting list for over a year to have an adaptive shower installed which would reduce her risk of harm.
Not being able to access essential medical treatment because of inadequate support services may, in extreme circumstances, affect a carer’s right to life.
A carer's right not to be discriminated against is protected by the Human Rights Act and by the Equality Act 2010, but in practice the Equality Act may be more useful. An example of this might be a carer being treated unfavourably at work as a result of caring for their partner at the end of their life.
What can carers do if they feel their human rights have not been respected?
If carers have concerns about a service they are receiving they should raise the issue with their service provider in writing or by arranging a meeting to discuss. To make a case, be specific about the rights concerned, provide evidence to back up the case and tell them what action is required to change the current situation and resolve the issue. Seek professional advice whenever you can.
For more detailed information please visit https://www.bihr.org.uk/carersguide
As a carer, do you feel passionate about human rights?
Sue Ryder is working in collaboration with the British Institute of Human Rights to ensure and promote compassion and dignity in end of life care.
We are interested in holding focus groups with carers and anyone interested in human rights in end of life care in 2020. If you would like to be involved, please email an expression of interest to email@example.com
Human Rights Lead
Jacqui Graves is Human Rights Lead at Sue Ryder. She is a Registered General Nurse with 33 years' experience and leads on our 'What Matters to Me: A Human Rights Approach to End of Life Care' training programme.