Carers

I have blogged before about Carers but thought after the weekend that I've had, that it was worth doing another blog on the subject.

 

When I am talking about Carers in this blog I am not talking about family members or friends, who help out, or provide assistance, either as a one off or on a regular basis.  I am talking about paid Carers, whether paid for by local authorities or by the individual, who come into your home to provide a specific service or element of care, to a disabled person.

 

When I first came out of hospital; just over 5 years ago, a care package was put in place to help fulfil my day-to-day needs.  I had never had Carers before and after all the negative media reports about Carers, I was very nervous about who would come to me and the sort of care and the quality of care I would receive.  Naively I thought I would only need care for a short period, until I adjusted to being able to cope at home on my own.

 

Well here we are 5 years later and I still have Carers come into me 3 times a day, and to be honest, I don't know how I would cope without them. 

 

I think I have been very lucky.  Most of the Carers have been very nice and friendly and, most importantly, very good at their jobs.  They assist me with the things I need help with, but allow me to get on with the things I can and want to do myself, even if this means that things take a little longer.

 

Occasionally, a Carer will come who is difficult to get on with and isn't interested in their work, but they don't usually last very long, once they realise that it is difficult, physically demanding  and poorly paid job.

 

And lets make no mistake, it is physically hard work.  In my case the Carer needs to help me out of bed to sit on the side of the bed before transferring to my shower chair.  Although the movement of the bed helps take some of the effort out of this process, the Carer sit needs to be able to get me upright and sitting on the side of the bed.  That means that they need to be able to move me, with very little assistance from me.  Now if I tell you that I weight 96kg, or slightly over 15 stones, I think you get an idea of the strength that is required.

 

The Carers are on a time deadline, for each call.  My calls are 45 minutes in the morning, 30 minutes at lunchtime and 30 minutes in the evening.  The Carer only gets paid for the length of the call.  If they overrun they don't get paid any extra, but are expected to complete the task anyway.  If they overrun this then means they are late at the next call, and every other call after that, usually with the impact that they just get progressively later during the day.

 

The Carer travels between jobs in their own time, and at there own expense.  So whether they drive or are on the bus, they have to pay their travelling expenses, and they are not paid for this time.  So they might have 5 calls to make at 30 minutes each, but have to travel for 15 minutes between calls.  This means they will be out for 3 hours 45 minutes but only be paid for 2 hours 30 minutes work.

 

And the amount they get paid is very low.  Local authority budgets are constantly being squeezed by the governments austerity drive.  This means that the amount of money allocated to social care by local authorities, has in real terms gone down, year on year.  The amount that the local authorities pay to care agencies hasn't changed for about the last 8 years and this means that the amount that the agencies pay to the Carers hasn't increased.  This means that most people who are any good at their jobs leave the caring profession because of the low pay, which then means that the people left doing the job are the people who can't get any other sort of work.  Alternatively, you get girls increasing the number of jobs they do to make up for the lack of a pay increase, which then means they are over working and burning out.

 

But the problem, really comes from the agencies themselves.  They are there to ensure that trained staff are in place to fulfil the care needs to of the local authorities residents who need care in their own homes.  In practice they are generally there to make money, have very little contact with individual clients, and provide girls as Carers on a who is available basis, rather than who is the most suitable.

 

As I have said before the majority of the girls, and occasional boy, who have come to me have been very good, but when the office become involved, its usually a problem.

 

I have a long on going issue with my current agency, where they fail to inform me when there are changes to my Carers.  This means I am expecting one person to arrive at their usual time, but then another Carer arrives at a different time.

 

The difficulty of a new Carer coming is that you need to change your routine and how you do things.  For example, my lunchtime call is primarily for the Carer to take me to the toilet.  I get used to the Carer coming at a regular time and controlling my body to be ready to go at that time.  If the Carer changes and comes earlier or later, this then impacts on what I've got used to and trained my body to, with the obvious unpleasant result.

 

When the regular Carer doesn't turn up at the regular time, you also have the anxiety of not knowing if someone is coming or when.

 

If I am not told about the change of Carer and any change in time, I cannot prepare myself for this change.  There is also an issue of common respect and dignity, in keeping clients informed of who is coming and when.

 

So to the weekend.

 

On Saturday morning, at 7.00am, a girl let herself into my house, using the key from the outside key-safe, and came and stood by my bed, and announced that her name was Linda and she was my Carer.  I had not been told about the change of Carer, she was a complete stranger to me, she had no uniform or any form of identification from the care agency.  I was supposed to take her on trust, that she was who she said she was, and allow her to help me with intimate personal care, and to see me naked.

 

To give you an idea of the scale of the problem, since May this year, my Cares have been changed on 15 different occasions.  These might have been just for one call, one week or on a permanent basis, but on only 3 of these occasions had I been told of the change prior to it happening.  In the 10 days prior to Saturday, there had been 3 changes to my Carers, none of which was I informed of, and on 3 occasions in the last 4 months, strangers have come into my house between 6.00 and 7.00 am to announce they are my Carers without me being told beforehand.

 

It turned out that Linda was between 5 and 6 months pregnant.  As I have said before I need some help in getting up out of bed, that requires my Carers assistance with moving me. 

 

She also did not seem to know how to use a sliding board.  I do all my transfers using a sliding board, so it is vital that any Carer coming to me knows how to use one.  The Carer only needs to put this under me properly, and take it out once I have moved, but if they cannot get it in the right place then it increases the difficulty and effort in my transfer, and the difficulty in getting to board out from under me once I have moved.

 

Linda did not seem to have a very good command of English, which meant that I needed to keep repeating myself, when asking her to do things.  This becomes frustrating, annoying and tiring to have to keep telling someone the same thing over and over again.

 

Anyway we got through the morning call, and she came lunchtime and we still had the same difficulties.  In the afternoon I rang the agency to see if there was any chance of replacing Linda for Sunday, only to be told that she was the only option.

 

I was so incensed at this point that I started sending letters and emails of complaint, not about Linda herself, but about the lack of being notified of the changes to Carers that seems to happen on a regular basis.

 

On Sunday morning, Linda arrived again, and obviously didn't want to be there.  She didn't say much to me, had a very long, miserable face and generally her attitude stank.  She did her job OK, but when it came to the final transfer into my wheelchair, she couldn't get the sliding board under me properly.  I tried to explain the problem and how she should place it better, but she said the problem was that I wasn't lifting my bottom enough!

 

I politely, pointed out that as I am disabled I am lifting my bottom as much as I can and that everyone else who comes to me seems to manage.  I then asked her just to get on with it and I'd struggle to do the transfer.

 

When she had finished, I told her not to come back at lunchtime.  She left without saying goodbye.

 

This morning, I received a telephone call from the area co-ordinator from the agency, who allocates the Carers to the jobs.  She said that she had heard that there was a problem at the weekend with the Carer.  I then asked her why I hadn't been told about the change of Carer prior to it happening.  She apologised for the oversight, so I then asked her if the other 2 occasions in the last 10 days were an oversight.  She didn't seem to know what I was talking about so I told her about these events.  Again she apologised and assured me that they do usually inform clients before changes occur, so I asked her about all the other occasions, and told her that if you don't do something this many times, it isn't an oversight, its either deliberate or incompetence.

 

I then asked her how much she knew about me and what care I needed.  She thought about it and then admitted that she didn't know anything about me or my care requirements.  I then asked her if it was appropriate to send a 5 to 6 months pregnant girl to help move a 15 stone man.  She blustered for a bit, and I said that its really a yes/no answer, to which she said maybe not.

 

I then told her about the letters of complaint I'd sent and that really I thought I needed to talk to the manager.

 

The manager really didn't know what had hit him.  He is obviously a man used to making a point, being believed and not being questioned.

 

When I said to him about not being informed about changes in Carers, he swore that he was always telling his staff that they must phone clients in these situations.  I said if that was the case why wasn't it happening.  It was either that he wasn't actually managing his office efficiently and aware of what is going on, or that staff just did what they liked in the knowledge that he wouldn't know.  The alternative was that it was a deliberate company policy.

 

I asked him about the appropriateness of sending a heavily pregnant girl to me.  He said that she is allowed to work up to the start of her maternity leave and that the area co-ordinator would assess whether the Carer could perform the care tasks for each client.  I then told him that the care co-ordinator had told me that she knew nothing about me or my care needs, so how was it possible to make any sort of assessment.

 

The conversation went round and round like this for sometime, before he finally agreed that there was a problem and that he needed to look into it.   My letters to local social services and the Care Quality Commission, among others, mean that it is now a very serious complaint that he needs to ensure he deals with and responds to properly.

 

Oh, and at the end he did apologise.

 

Having Carers can make a huge impact on your life.

 

A good Carer, or group of Carers, can be a positive force in your life.  They can provide excellent, consistent care.  A good Carer doing a good job, can make you feel better about yourself, about your situation and increase your self esteem.  You can form a relationship with them that is beneficial to you both.  They can provide contact with the outside world, and especially for those people on their own, the Carer might be the only person you see each day.

 

A bad Carer can have a massive negative influence on a person.  They can cause stress and anxiety.  They won't do their job properly, which can then impact on your quality of life, and how you and others see yourself.  They rush in and out forgetting that you might need some social interaction.

 

As I've said before, I think I've been very luck with the majority of Carers who have come to me.  I hope that none of you reading this gets to a point where you need Carers, but inevitably some of you will.  For those of you who do, then I hope that like me you have good Carers most of the time.  We shouldn't have to accept poor care simply because its all that's available.  We are still people, who deserve respect and dignity.  We are all some ones mum or dad, husband or wife, son or daughter, brother or sister. But we should be treated just the same as anyone else.

 

I've had some great Carers and here is a small thank you to Jane, to Mary, to Natalia, to Jason, to Hawa, to Augusta, to Khanya, to Marilyn, to Hildreth, and especially to Margaret.  These are just a few of those great Carers who have and still do make a positive impact on my life and well being.

 

Someone once said:

 

"Any society, any nation, is judged on the basis of how it treats its weakest members ; the last, the least, the littlest."

 

On the strength of the care that is to often provided I'm not sure we would be judged to well.