Jane Crosbie Lyle: 39p an hour is shocking value the Government places on carers like Jane
Jane Crosbie Lyle has been her daughter Phoebe's full-time carer since she was left paralysed by a hit-and-run driver 18 years ago, for which she earns a miserly £66.15 a week. That is the reality behind Carers Week
My first response to the request to write this article was to refuse. This was not because I am not a full-time carer, but because I know that in the select group to which I belong I am actually very fortunate.
I am fortunate that my daughter, Phoebe, has a care package to help me with her care, fortunate that my daughter is an articulate young woman who is more than capable of fighting for her own rights, fortunate because my husband has a job that allows us to survive as a single-income family.
However, I know that for every one of me, there are hundreds more who are not so fortunate and we all need a voice and to be heard.
The start of Carers Week coincided with the arrival into my bank account of my carer's allowance for the month.
To qualify for a carer's allowance, you must be caring for someone who qualifies for the top rate of either DLA or PIP, for over 36 hours a week, although most do 24 hours a day, snatching sleep when they can.
In addition to the £66.15 allowance, I am also "allowed" to earn up to £123 per week, before losing my allowance. This means that full-time carers earn 39p an hour, or a whacking £1.12 per hour if they manage to find a job that also allows them to take time off for endless, multiple hospital appointments, covering for gaps in a care package, or sheer exhaustion.
Interested to see what an hour's carer's allowance would buy, I asked in my local post office. A second-class stamp was outside my price range as it costs 61p and most newspapers, including this one, are now £1 or more.
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Eventually, after much searching, I discovered a small bag of jelly-beans (eight, to be precise) that was within my price range and would even leave me 9p spare.
This is what the Government and society thinks that an hour of the caring, the sleep deprivation, the social isolation, the physical and mental health problems of the 220,000 carers in Northern Ireland is worth.
And, indeed, most of the 220,000 do not qualify for carer's allowance, so their care is literally "worthless", despite saving the Government an estimated £4.6bn in Northern Ireland and around £57bn throughout the UK.
Approximately 8,800 young people in Northern Ireland are caring for family members: siblings, or parents. Some 8,800 young people who should be hanging around with their friends, playing games, doing their coursework for GCSEs and A-levels are, instead, shouldering the responsibility of care and, in doing so, are severely limiting their chances in employment, academic and sporting achievements, and both physical and mental health.
No parent should ever have to rely on their school-age child for care in the absence of a proper care package.
We should hang our heads in shame that we allow this to happen. Instead, we get "heart-warming" pieces in newsfeeds that attract comments about how great they are. Don't get me wrong. They are wonderful young people. But they shouldn't have to be.
Many carers say that social isolation is one of their main problems. Given that many online and paper forms don't even include "carer" in their list of career options, this is hardly surprising. I have been a carer for over 18 years and before the advent of closed groups on social media sites, at times I felt very alone. And this was despite having a very supportive and sympathetic family and friends. I have been a member of a number of groups for over eight years and have found them to be a lifeline of support and friendship.
Two-thirds of all carers are women, especially if the person cared for is a child, or parent.
However, in a growing number of cases, men are also joining our ranks. This brings with it its own special problem, as society at large, and the medical and social agencies in particular, assume that the carer must be female, so their needs are often overlooked.
Too often, carers are seen by health and social service providers as both the solution and the problem. I know parents who have been dismissed, labelled as over-anxious parents, or even blocked on social media when they have raised concerns about their loved ones' health, or care, only to have been proven correct.
Being my daughter's carer has been a privilege, as I have watched her grow into a talented, funny, opinionated young lady and I am incredibly proud of both her and her brother, Patrick.
But it is not a job I would have chosen for myself and I have had to spend more time than I would have ever wanted to filling in endless forms, dealing with rotas and appointments, organising care so I could go to my son's rugby matches, while trying to cling on to my own identity as an individual.
Crossroads, Caring for Young Carers, is a wonderful charity that provided our son with much-appreciated support throughout his childhood.
Too often, non-disabled siblings are overlooked by everyone, but his weekly visits to Crossroads were a lifeline.
Along the way, I have met a remarkable group of people and experienced acts of kindness that have left me humbled.
I am fortunate to have been assisted by the staff of RBHSC, the community care team at the Ulster Hospital Group and Phoebe's carers, past and present, and I am so grateful to live in a country where the NHS exists, no matter how creaky.
While it is nice that there is now a week in which the role of the carer is celebrated, that role continues day after day, week after week, year after year. Everyone reading this will know at least one carer.
If you really want to do something to help, pick up the phone and give them a call, or call round in person and bring cake. Ask them how they are doing and listen to them.
That's all we really want. To be seen, to be listened to, to be acknowledged, but definitely not to be pitied.