Changing The Conversation Around Caring

Carers week begins today in the UK and I’d like to write about it from the perspective of a disabled person with care needs. I’m going to talk about non-professional carers/ personal assistants in this piece; the family, friends and children of those with care needs.

I think all of us have read enough flowery statements overflowing with praise and gratitude for those who care so I’m not going to write one of those. I appreciate those who care for me and I am grateful to them but that is not where my feelings on the matter end. My feelings, like most other peoples’, are much more complex and deserves talking about in full rather than simply stopping at praise for people often struggling to cope in a very difficult and emotive situation. 
There is a complex relationship between the sick/disabled person, their carer(s) and the support services (like social services, the NHS, DWP and others). There is a huge power imbalance at the core which, when dealt with well, can really strengthen the bonds between everyone involved in a positive manner. On the other hand, when the power imbalance isn’t acknowledged or is abused it can cause health problems, hospitalisation, neglect, abuse or in more extreme cases like that of Fiona & Francesca Pilkington, suicide and murder. If we wish to see supportive relationships built it is vital for everyone involved that the morale, physical health and mental well-being of carers is maintained.
Currently it’s estimated that 6.4 million carers in the UK (nearly 1 in 10 of the population) provide £119 billion worth of unpaid* labour annually. Carers Trust states that two thirds of those carers have never sought the help of any services outside of their families. It is all too common for carers to muddle on without contacting social services for a carers assessment, or the DWP to look at claiming DLA & Carers Allowance, which could provide (limited) financial help, respite, professional care and/or adaptations. In these circumstances it’s not just the carer who misses out; the person being cared for loses out on the opportunity to potentially live more independently and to have a choice over whom delivers their care.

As a disabled person this makes me angry. Angry that the support services do not communicate with each other to reach out more effectively to carers, so that they are aware of exactly what help is available. Angry that the media and society help perpetuate a culture where family & friends think they should take on the hard work and responsibility of caring without support or financial remuneration. Angry that I don’t get to choose if I want my partner to be my carer or not and that they don’t have a say in it either (unless they want to move out). Angry that the people whom I frequently rely on so that I can wash, eat and take my medication are left stressed, untrained and unpaid by the system. 

This system fails everyone and we need to get angry about it. This world doesn’t need yet another conversation about how we should pity those who care and commend their bravery. I don’t want to ‘celebrate’ that my loved ones, friends and family are emotionally manipulated by society and forced to work as my carer because there is no other real choice. I also don’t want to feed into the idea that disability is a burden either, it’s counter productive and feeds resentment on both sides. What I believe the world needs more of are conversations about how we can;
  • Improve access to support for carers and for the people they care for.
  • Pay carers a proper wage for all the hours they work whilst supporting someone.
  • Ensure real choice for both the carer and the person with care/support requirements.
We can all start to address these issues by challenging assumptions; we can ask politicians why carers are not paid for the work they provide, we can talk openly about how this current system is not, in fact, a beautiful model of glorious sacrifice in the name of love, we can mention its problems and express why it’s better for everyone that family members are not forced to provide unpaid labour.

I don’t think it should be radical to suggest that caring is work. Nor should it be radical to suggest that carers deserve to be treated like other public service providers. Family members should have a choice in whether or not they dedicate their lives to caring for disabled relatives.

It’s great that carers work hard for no pay. But they shouldn’t have to.

* I include in this those that receive Carers Allowance as I do not think that £55 per week for up to 24 hour a day care is a ‘wage’. Someone providing 30 hours of care would only be receiving an insulting £1.83 an hour
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