For Carers Week in June 2018, Lisa Goodall gave us her story about caring for her husband as he received treatment for acute lymphoblastic leukaemia (ALL). She highlights many of the issues that friends and families face when their loved one is diagnosed with a blood cancer; you can read her blogs here.
When a diagnosis of leukaemia is given, it can be an extremely stressful time. The person diagnosed will need support emotionally, physically, and financially. Naturally, in times of need, we turn to those closest to us, and they allow us to cry on their shoulder. But to whom do those we rely on then turn to themselves?
Who is a carer?
Many of us can think of a time when we have stepped up for a friend or family member; maybe visited them in hospital, cooked a meal when they weren’t able, or have done the weekly shop for them. And it is unlikely that we thought at the time about the energy, the time or the money that might have cost us. We do these things for the people we love and care about, nor would we have called ourselves “carers”.
What if that person had not returned to full health? Would you have been able to sustain providing that help? Would you have felt more tired, been struggling financially or unable to see your friends as often?
Mention the word “carer” and most think of the caring profession, going from home to home or caring for our loved ones in a nursing home. Yet Carers UK define a carer as anyone who provides unpaid care by looking after an ill, frail or disabled family member, friend or partner. From the results of the 2011 census, they identified 6.5 million people who could be defined as carers in this way.
Why do unpaid carers need specific rights?
In 2011, Carers UK published a report entitled “The Value of Caring”. This research estimated that the unpaid carers provided help to an estimated value of £119 billion a year. This is a bill that would otherwise have been picked up by the person in need, who may not be able to afford the equivalent professional support, or by the state.
Whilst caring is a natural and human response to those in need around us, that does not make it an easy thing to do. Research has also shown that unpaid caring can have negative effects on other aspects of the carer’s life. They may not be able to work, either at all or not as much as they would like, impacting finances and chances for social interaction. They may not have time for the things they enjoy, again missing social time or a chance to relax. They may neglect their own health or need emotional support.
Other groups who are at a disadvantage in these ways are protected by law. For example, being diagnosed with a blood cancer means you are protected as a disabled person under the Equality Act 2010. This recognises the fact you may be less able to do certain things as a result of a blood cancer diagnosis and society should not penalise you for that. Therefore, it is right that unpaid carers, those who disadvantage themselves in order to care for others, should be protected and supported by the law too. Unfortunately, being recognised in law has not been an easy road.
Carers rights in the UK: a brief history
The movement for winning legal rights for carers began with a letter to The Times in 1963. The Reverend Mary Webster outlined in this letter the difficulties facing women, particularly single women, who had caring responsibilities in addition to working outside of the home. She drew particular attention to the financial hardship and isolation they faced, basing this on her own experience of giving up work as a minister to care for her elderly parents. She then formed a campaigning group, The National Council for the Single Woman and Her Dependants (NCSWD), in 1965 to further her cause.
Several financial rights for carers were won by the NCSWD over the following years. 1967 saw the introduction of the Dependent Relative Tax Allowance; the first legal right ever established for carers. Attendance Allowance for those in need of care was created in 1971. However, following a report entitled “The Value of Caring”, the first welfare benefit paid directly to those caring for others was created in 1976. This was Invalid Carers Allowance and was for unmarried people only at the time (it is still in existence and known as Carers Allowance). Reverend Webster sadly passed away in 1969, but her legacy of using evidence as the basis of campaigns for carers continues today.
Other campaigning groups have formed over the years. For example, Judith Oliver set up the Association of Carers in 1981, in response to the perception that groups such as the NCSWD focused too narrowly on those caring for elderly relatives. Judith was caring for her disabled husband at the time. Despite the changes in law already conceded, the Association was initially refused in its application to become a charity. They campaigned effectively to win a European Court case that would allow married women to receive Invalid Carers Allowance, as well as unmarried people.
The NCSWD and the Association of Carers joined in 1988 to become the Carers Association, now known as Carers UK, the charity which leads the Carers Rights Day campaign today.
What are my rights as a carer now?
Since the formation of Carers UK, legal rights for carers in the UK have improved. The most recent relevant legislation is the Care Act 2014, which covers the rights of adult carers in England. It sets out that the local authority has a duty to assess carers, as well as people who need care, and then implement any services they might need to support them in their caring role. It also says the assessment must cover all aspects of the carer’s life that are affected by caring (e.g. social, economic, health) and that the carer is best placed to determine how the caring affects their wellbeing. Different legislation, and therefore different rules for accessing support, apply in Scotland, Northern Ireland and Wales.
In addition to your specific carer’s rights, there are other laws with sections that are useful to carers. One example is the Employment Rights Act 1996, which outlines the right of all employees to request flexible working and to have time off to care for dependents.
The continuing challenge is to also make sure those who are caring for others are aware of these rights and know how to access support. Caring for others is natural and fulfilling but also a challenge, and Carers Rights Day provides us with an opportunity to highlight these challenges so that carers are properly recognised, respected and supported in our society.
If you are caring for someone following a diagnosis of a blood cancer, or know of someone who is, you can find a guide to your rights and how to act on them in our Advocacy Toolkit here.
You can also get in touch with the Patient Advocacy Team via firstname.lastname@example.org, or call our helpline on 08088 010 444, where a member of the team will help you find the right support for you.