I Care For My Daughter 24 Hours A Day - But People Like Me Are Receiving Woefully Inadequate Support

We will never shirk our responsibility – but the help we get stretches as far as a wooden elastic band
Dan White

Today is Carers Rights Day. For most of the population this will be just another nominated day that will drift under their radar while they go about chasing a Christmas deal or propping up the coffee bar.

When people think of care, they tend to think of the nursing home staff, tending the elderly residents, providing tea and bed changes, earning a mediocre crust while doing their utmost best to comfort a life. The reality is that across the country the real story of care takes place behind closed doors, lowly paid or even unpaid.

Our daughter is disabled and requires full-time care. Myself and my wife share the duties between us because we adore our child utterly. Every week we sit, shaking with excitement about receiving the woefully inadequate amount of £64.60 that is supposed to see the person nominated as the main carer, and the recipient of care, through to the next pay day. This stunningly ridiculous amount of lucre works out to £2.69 per hour. Why? Because caring is a 24-hour job. In the majority of households, the patient does not work an eight-hour shift of sickness, they tend not to restrain their needs to suit a working day.

Ask any parent or carer who is entitled to this benefit and they will tell you in stretches as far as a wooden elastic band. The other irony of the carers allowance is the fact you may not even be eligible for it in the first place – certain criteria must be met and the individual you care for must be eligible for other benefits.

We care for our daughter out of love and wishing her to grow and be healthy into the world. However (I will probably be marked for being an ingrate by many), but when you take into account fuel trips to hospital, parking in a hospital car park that earns more an hour than you do and buying essentials such as dry mats, equipment and food, you find the £64 just about covers nothing. A decent allowance would give us a chance to cease buying from the food bank, possibly get the wheelchair fixed and blow the candles out.

There is, across the country, the hidden community of care. The young carers who diligently look after mum or dad or both, who receive nothing in the way of support, either financial or personal. These incredible young people often juggle school with care on a shoestring budget while struggling mentally because the support network around them is being eroded by decades of shortsighted cuts.

There is also the elderly who are often forced to support each other with only a pension to survive on, all these brilliant examples of humanity often not “eligible”.

The system also paints care workers as “low-skilled”. The irony when, through care you possibly know more pediatric, palliative and geriatric care than a hospital Costas full of student doctors. We learn by doing.

The care community is one that works on love and loyalty – me and my wife are no exception. However, the reality of a capitalist existence is that things have to be paid for, and when you and your kin are deemed as financially worthy as a S Club 7 reunion, you have to be imaginative or learn to just go without.

The system of care is buckling rapidly, with an ever increasing elderly population 6,000 new carers a week are joining the gang. Across the country around 6.5million people are carers. By 2037 this will rise to 9million. We are saving the NHS billions through our love and loyalty, we will never shirk those responsibilities, but as the cost of living, Brexit and austerity bites, a bit of common sense from the number crunchers is needed. We are here, support us, please.