The crisis of carers paid just £1.79 an hour.

I went to renew my car insurance recently only to discover my occupation is ‘unlisted’. I was forced to telephone them and ask what I should list myself as. They decided I was either ‘unemployed’ or ‘stay at home parent’. I am neither of these! I am a full time carer but no-one seems to know we even exist!

I gave up a managerial position to care for my disabled son. I have a degree education and had a good career in sales. I was a home owner, had a fairly new car and I was valued. Then I had a disabled child and now all I am deemed worthy of is an hourly rate of £1.79. In reality I get much much less than that!

I feel utterly disgusted at how unpaid carers are treated in this country. Are people aware that carers allowance is only given out to those caring for someone 35 hours a week or more and that it is a weekly amount of just £62.70? I wish I was only working 35 hours caring but assuming this was all I worked I would still only be paid a measly £1.79 an hour! Would you work for that amount?

Would you work permanent night shifts dealing with someone with challenging behaviour, who is completely incontinent and has night seizures, and still have to work 12 hour days as well? Would your union not have something to say about this? What about if you had no breaks and were often attacked at work? What about if you were denied any holidays or even time off for ill health? What if sick pay was non existent? What if all your employment rights were taken away from you?

When I became a full time carer it appears I lost all my human rights.



I have no union to protect me and no manager to put my case to. I went from being a someone to a no-one the second I became a carer.

I am considered nothing by society who view me as a ‘benefit scrounger’, ‘lazy’ or nothing more than ‘unemployed’. People scoff at my ‘profession’ like it is a joke.

Let me tell you my job is no joke!

I deal with life and death with a child who has severe complex needs. I make decisions on his welfare and health needs daily that should really be made by neurologists, doctors and oncologists. I co-ordinate his care without a secretary and attend meetings without back up. I sign forms as his ‘representative’ without legal support because no-one else is bothered what happens anyway.

If my son should die and I updated my CV employers would simply see me as having taken a ‘career break’ or ‘time out for family’ rather than viewing my current situation as a serious job. Why? Because caring has no prestige. It is seen as worthless, less than, of no value and not beneficial to any career. Even if I wished to use my experience to take up full-time employment in the care sector my current work is of no use as I have no reference or company or courses I have completed.

Even the NHS view me as simply the one who pushes the wheelchair or who hands his appointment card over. When my son reaches a certain age it will be expected he will attend appointments with me waiting outside despite the fact he is completely non verbal and unable to understand what is required of him. I will have to go through a host of hoops and bureaucracy to prove as his carer I even have a right to be with him, yet anyone can have an advocate or friend with them and they are fine?

I gave birth to a disabled child. I gave up my career to be his carer. Apparently that means my career has hit a brick wall and I have waved goodbye to my self respect and self worth. My job title no longer even appears on a drop down list and my hourly worth is now reduced to just £1.79 an hour.

This is the crisis of carers in Great Britain right now.



Does anyone realise this is going on? 

The extra stress of being a full time carer at Christmas


If you ask people what jobs never get time off at Christmas and the majority will list those in the emergency services or health service. These are vital services that we all expect to work through public holidays to ensure our health and safety at all times.

But among those working tirelessly on Christmas Day, Boxing Day and throughout the new year celebrations too are full time carers; unsung heroes who sacrifice their own holidays to care for the needs of others, often at little or even no pay.

Christmas for full time carers comes with so much extra stress as services they usually rely on throughout the year come to a halt for the festivities. When day care, special needs schools, home help and respite centres all have times of closure for staff to have annual leave the full time stay at home carer is the one left to pick up the pieces, work longer hours and ensure continuity for the person they care for.

Then you have the fact that pharmacies, GP surgeries, dentists, clinics and out patient appointments all cease for a few days too. For full time carers coping with loved ones with complex medical conditions this not only causes complications but extra worry. Out of hours call centres have often never heard of genetic conditions or have the training to deal with patients who perhaps are unable to communicate. Taking a person you care for who has complex medical and communication needs to an out of hours GP with little to no knowledge of their medical history brings risks and worries for a carer so they often care for someone at home when otherwise they would be able to access medical support. Getting a person who is wheelchair bound or who does not cope with new environments into a clinic they are unfamiliar with presents extra stress and anxiety for a carer who is perhaps already exhausted themselves.

Christmas comes with an expectation of giving to family and friends. For a carer who devotes their entire life to someone else this brings a huge challenge of finding time to do all that is expected as a friend, a mother or sister whilst juggling the continued needs of a loved one. There is only so many hours in a day and the pressure on carers to be everything to everyone can take it’s toll.

Carers are incredible people though. They take on the role of so many professionals without the pay or training. They do physiotherapy, speech therapy, play therapy and occupational therapy without realising. They provide stability of care, reliability of routine, love and attention that no other service or person could provide. They feed, dress, take care of personal needs and befriend some of the most vulnerable in our society at a time when these people are so often forgotten.

This Christmas Day thousands upon thousands of full time carers will be preparing specialist Christmas dinners for someone they love, who for many reasons, is unable to use cutlery or sit at the dinner table with family. They could be providing pain relief, ensuring oxygen is supplied properly or talking to a loved one as they come out of a seizure yet again. They could be changing nappies or pads, dressing wounds or unwrapping gifts for someone else who can not do it for themselves.

They do it out of love. We owe them our love and gratitude too. It may not be our loved one they are caring for right now but one day it could be.

I am one of those full time carers at Christmas and I know the extra stress that this time of year brings.

To all those caring this Christmas know that you too are cared for. I see the extra stress this time of year brings and I care.

I see you care.

Know that I care too.


This post first appeared here

No-one today should be caring alone


No-one today should be caring alone

Middle aged man, commuting by train
Thoughts turn to his sister he left crying in pain
He’s off to a meeting, while she struggles at home
Both of them left to face it alone

Teenage mum struggling, pushing a chair
The child is yelling, people just stare
She is begging for help as she picks up the phone
She cares for her child, but does it alone

The couple at the cafe, sharing their tea
One of them lost yet no-one can see
He lives in the past, a mind not his own
Forgetting her name, they both grieve alone

The parents of a child who may never walk
They sing to a baby who still can not talk
Kissing a hand, though it’s all skin and bone
Everyday precious, weeping alone

Little eight year old, should be out to play
Instead she is feeding her dad everyday
Doing his care as the nurses have shown
With no one to tell her she isn’t alone

The next door neighbour, bringing some meals
Staying and listening to ask how she feels
Filling out forms while letting her moan
Determined his friend should not feel alone

The father sitting at the hospital bed
Digesting the words that the doctor just said
A new diagnosis, his mind has been thrown
Needing support so he isn’t alone

So many people with stories to tell
Caring for others, and doing it well
Yet they all need support, to know they are not on their own
Because no-one today should be caring alone.

Miriam Gwynne

I guess we should check out that carers table then

20140610-233824-85104750.jpgAnother afternoon spent at hospital with my 5-year-old. Another trip to the eye clinic. We are on first name terms with the lady at the desk now. She doesn’t even look at the name on the appointment card as we hand it to her. She ticks my son’s name off on the list without even giving it a second though. He’s become a ‘regular’ now.

We are well versed in the hospital and clinic drill. We know when parking is going to be an issue and drive straight past the visitor car park and right into the overflow one without the previous six circles around looking for a space we used to do. We have long stopped looking at the signposts directing people to wards, clinics and hand washes. So this time we think we can risk taking the 5-year-old in without his mobility buggy. He knows the drill now. And despite hospitals apparently being one of the most disabled friendly places around, believe it or not, the chairs in the clinic are all nailed to the floor in rigid rows with no space for wheelchairs or buggies of any sort! My son can walk, physically anyway, and he is able to sit on a seat. So it has to be easier if we walk him in.

As he flaps and vocalised towards the front door I suddenly realised we had our first problem: automatic doors! Isaac loves them and is never content to just open them once…or twice…or forty times. He could happily be entertained by them all day and all night. The clinic is on the ground level so there is no enticing him along using a lift as an incentive. Not that he would get in the lift anyway. No, he would just want to watch the doors open and close all day there too.

I ended up carrying him. He is two-thirds of my height now and almost a third of my body weight. And if he does not want to go somewhere…well he won’t make carrying easy! What was I thinking leaving that buggy in the car? We arrived at the clinic exhausted before we even started.

I should have guessed it was going to be one of ‘those’ appointments. You know, the ones you think seem never-ending. The ones where the clock on the wall forgets to move and everyone else leaves when you seem stuck to the seat. Yes, those ones. Isaac sat hammering on the sponge seat back laughing at the noise. At least he seemed happy enough. He had to be carried into the first room. They tried and failed to get his attention. Until they put those dreaded drops in that is. Non verbal does not mean compliant! We had a choice of waiting in a boring waiting room for half an hour with a five-year old with complex needs who now had stinging eyes and blurred vision or we could leave the clinic and return in 30 minutes. Moving the car was not an option or it would take longer than the 30 minutes to find another parking space. Isaac had his own plans. He ran straight back to those automatic doors again!

Watching him flapping, clapping and spinning at those doors and gradually getting more and more confused as he could no longer make out the exact point of them opening and closing due to his vision slowly failing, made me suddenly realise that I was no longer just a parent to this boy. I had long passed that point. I was now his mummy and his full-time carer at the same time. He was my son, yes, but he was also in need of much more care than any ordinary child his age. Though his eyes were struggling, mine could see clearly. This was a child with needs so severe he will need life long care. I was so relaxed in this hospital setting from so many visits that it seemed like home.

My husband walked over and said he had noticed a table with some people at it. We had walked right past it. So preoccupied were we with watching out for the needs of our son, that ironically we had walked right past a table of leaflets and handouts for carers!

Are we parents or are we carers? Or can we be both?

We have two children registered disabled. My diary is full of appointments for hospitals, clinics, home visits, and meetings. I spend my week carrying out speech therapy, play therapy, writing social stories, making visuals and making sure we have mashed potato in. Both my children have teams of professionals involved in their care and support. I am still changing nappies on 5 year olds. 20 minutes ago I just had to carry my child kicking and screaming down a hospital corridor because he refused to leave the automatic doors.

I guess we should check out the carers table then.

Society may not see me as anything more than a mummy. Until recently I would have seen myself as more of a mum than a carer too. I look after my children because I love them, like all mums do.

But very few five-year olds still need to be changed like a baby. Very few five-year olds have no speech. Few five-year olds have the complex medical and developmental needs of my son, or the high anxiety of my daughter. Thankfully not many five-year olds require teams of professionals to support them everyday.

Isaac was given glasses this week. Lots of five-year olds have glasses. But for me this was the final thing that made me realise I have definitely moved from just being mum to my children to also being their carers.

It was amazing how many people checked out that carers table. Today I was one of them.

A trip to the eye clinic for my son has helped him see clearer. But it also helped me see clearer too.