Carers Rights: Ray’s Story

Ray and James on their wedding day

This weekend we celebrated the anniversary of the Universal Declaration of Human Rights. We are supporting this by publishing a blog post about the rights of carers of people living with dementia. We were inspired by the recent Care Cameo written by Anna Buchanan and produced by Scottish Care and the Life Changes Trust. On Carers Rights Day on the 24th of November we asked some of our Scottish carers to tell us what rights meant to them. This piece elaborates on the rights that matter to unpaid carers and places these in the context of the Care Cameo. We are highlighting in particular the story of Ray Fallan, a wife, a (grand)mother, an employee and a citizen who also provides unpaid care to her husband James.

One of the rights that was most valued by our carers was the right to a working life, but to be able to combine this with their caring responsibilities without fear of unemployment.

Article 23 of the Universal Declaration of Human Rights states that: “everyone has the right to work, to free choice of employment, to just and favourable conditions of work and to protection against unemployment.”

Ray and James at one of their fancy dress parties

Ray and her husband James at one of their fancy dress parties

For Ray being in work is so important: hard work and self-sufficiency are some of the values she and her husband have always upheld. She has been unable to fully exercise this right because of her caring responsibilities and the shortcomings of the care system to provide the family with what they need. She says: “I have not been able to fulfil my obligations to my current employer; this makes me feel like a failure. My employment will be my saviour in the future, giving me focus, a meaning, a commitment and most of all contact with the outside world. It is my right to be able to work, pay my bills and have a purpose to reach goals in my life.”

In the Care Cameo written by Anna Buchanan the right to family life is extensively discussed. She refers to article 8 of the European Convention of Human Rights – the right to respect for private and family life. The examples mentioned in the cameo illustrate that it’s not always easy to uphold this right, especially when people are living in care settings. Sometimes rights have to be balanced. Anna refers to a couple who were placed 40 miles apart because of their separate care needs. The distance meant that the couple couldn’t see each other as often as they had in the 60 years they had been married – this prospect was distressing for everyone involved. The staff involved managed to find a solution that enabled this couple and their son to be a family, despite their distance.

Although Ray’s family’s situation is very different the same right applies. She is forced to spend so much time battling the system that this interferes with the time she could spend with her family.

She says: “There seem to be so many barriers, you’re always told to go to someone else. There are so many different routes to the end point and no-one tells you which route to take.”

Ray’s right to a family life is compromised: “I have two married daughters and three grandchildren. It’s just awful that you can’t spend the quality time with them that you want to. It’s especially hard on special occasions when you cannot take part in celebrations and special times. Why can’t I simply take my granddaughter to the park? It’s my human right, my children’s human right and the right of my grandchildren to make many many memories.”

Another right that was identified as important by carers can be found in the Scottish charter of rights for people with dementia and their carers. Specifically article 14: the right to information and to participation in decision making. Scottish dementia policy is world renowned for its involvement of people with dementia and their carers at the heart of the process. Yet the same principle is not always upheld in the practice of providing care and support to people with dementia and the people that care for them. There is a distinct call from our carers to be heard and listened to based on the expertise they have obtained from providing care for a loved one.

Ray says with regards to this “we know the person better than anybody. This must be considered. I know James best, professionals might know the condition but I know the person.”

This same principle extends to listening to all carers and every experience, and not just broadcasting the positive ones. Ray says: “my story might be mostly negative, but I want positivity, so that no-one has to go through my awful journey. My awful journey has given me the strength to make things better. This journey has made me passionate to make a change for the people coming behind me. I want to share my experience so that professionals get a better understanding to make more educated policies and strategies, and put actions into place. We need to be listened to: we’re the ones who know how difficult it is. We know where change is required and we need to be heard. I’m not going to apologise for my story, it’s the truth. Everybody’s story matters. There’s value in each and every story, and if we invest in it then it becomes even more valuable. This should be used more in policies.”

Anna Buchanan ends the care cameo with three calls to action for health and social care professionals:
1)  Develop a better understanding of how human rights impact our day to day work.

2) Integrate the new health and social care standards into our thinking.

3) Consider what the balance of rights mean for you.

We want to extend these calls to action to unpaid carers of people living with dementia: consider what human rights mean to you and how they impact your day to day life. Your voice and your story matters and as a society we need to listen to them.

Ray and James at their Daughter’s wedding

Ray and James at their daughter's wedding

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