Caught In The Middle

Polly has just read the homecare agency the riot act. Not for any one particular reason, but rather for the accumulative drip drip drip of minor (and occasional major) misdemeanours. This mornings it was arriving an hour late without notifying us of the delay. Others include not writing in the homecare record book, expecting time sheets to be signed with out the times filled in, and general lack of training.

The relationship between the disabled client and their carers is, as you might imagine, complex. I rely on my team for a series of highly personal tasks, from dressing, washing and going to the toilet, to fitting the ventilator mask at night and charging the wheelchair battery. You want to be friendly but not necessarily friends. You want carers to be efficient and aware of what needs doing but you don't want to take them for granted. When there are problems you need a straight forward way of dealing with them. Often it is not the individual carer who is at fault but rather the support they are getting from their employers. (For example, if a carer is running late it is the responsibility of the office to keep us informed.) When things are going well the quality of life for the client is enhanced. When they aren't the quality of life is eroded, making a difficult situation unbearable.

The agency who employ the carers I use only pay the carers for the hours they work. They get no sick pay, so they will often struggle into work when they are unwell. This is bad for them and positively dangerous for me if they are working with an infectious cold. I have known carers to work morning and night, every single day, week after week, for months on end, reluctant to take a day off because they simply can not afford too. Inevitably many of them crash and burn.

I'd be interested to know the exact employment status of the individual carer. Are they employees? Self-employed? Indentured slaves? Councils employ homecare agencies to fulfil their statutory obligation to provide the service because agencies are cheaper than providing an in-house service. It seems to me that councils turn a blind eye to the exact reasons how and why agencies provide a cheaper service.

And caught in the middle of this exhausting and sometimes exploitative situation are people like myself.

Every night I wear a nasal mask attached to a ventilator. The mask is held In place by a web of straps that can be adjusted to hold the mask at the right tension and in the right position to make a pressurised seal. Over recent nights something has been going wrong. I'm tired and needing the ventilator and perhaps settling for things being done too quickly. The language requirements needed to explain the very slight adjustments required for a perfect fit are beyond me when I am tired and English is often the carer's 3rd or 4th language. The result has been a slightly ill-fitting mask which has made slight abrasions to the inside is my nostrils and the straps have cut into the skin above my ears. I've woken perhaps a dozen times in the night by the pain and tried to make adjustments myself, but have been thwarted by my dodgy left arm. This morning Joyce, one of the carers, observed me and said disapprovingly, “there is blood.” Tonight I will be even more tired.

In many ways I am fortunate. I can articulate my grievances and worries. I have Polly to advocate on my behalf. But I worry for the countless vulnerable people who receive a service that is being parred to the bone and who can not moan and kick up a fuss. I bet their nostrils hurt like hell.