Tuesday, September 14th 2010

It never rains…

I had a meeting with my care manager this morning as I quite often do. Like usual I assumed it would be to discuss the care package, talk about any problems and concerns I had, and to update me on any changes coming my way. But instead she opened with the line “I’m afraid I’ve got some very bad news”…

My care agency are pulling out of my care package at the end of the month! I now have just over two weeks to make alternative arrangements! For a moment I was left stunned at the completely unexpected hammer blow. Why are they doing this? Because they say they can no longer support it. Why? Apparently it’s because they are unable to provide the right people. I’m hearing, through other channels, that it’s because all the new people that are being sent to work with me lately are proving unsuitable (and that’s being kind), and all the people I have identified (and there are at least half a dozen) as suitable and competent either don’t want to work with me (because they don’t like the hours being offered) or are unable to because the office won’t move them from existing clients or they don’t have enough spare capacity. Hence we’ve arrived at the situation we are in now.

The above is of course a simplification of a situation that has been steadily brewing for the past two years. When I first had a need for professional care in October 2008 I was already thinking ahead to a time when I would be heavily disabled and therefore completely dependent on others. So one of the main objectives was to try and build a care package consisting of a group of reliable, competent and loyal carers who would stay with me throughout the course of the disease. I also wanted people who would work well with each other and as a team so that they would be prepared to cover each other in times of holiday or sickness. What I was trying to avoid was having major upheavals in the care team supporting me during the later stages of the disease. By this time I was hoping that all the problems would have been ironed out and everything related to my care would run smoothly. How naive I was to think that there was stability in the care sector!

To be honest I’ve been under a lot of stress lately even before today because I was aware that one of my main carers was leaving soon and it was hard to see how we would replace her because of her range of skills. She also had a willingness to work not only her own hours but to fill in and do any hours that nobody else was available for. In fact it is because of her that the package has been kept running relatively smoothly all year otherwise we would have reached this point many months ago. She is a key and critical member of the team. In fact I have often remarked to my care manager that there are essentially three pillars holding my care package in place. If any of those pillars were removed we would be in serious danger of the whole package collapsing. The fact that this is exactly what appears to have happened shows how deficient the management of the care agency have been in allowing the situation to develop.

The trouble is for every person like Ann, Debbie, Francesca, Alison, Kim and Alli that have looked after me, there have been a dozen or more that have come through my door that are either clueless, incompetent, lazy, dangerous, lacking in imagination or seemingly only able to work to a predefined script and hopeless when circumstances change. It certainly feels at times that there is something of a lottery in terms of who turns up: will it be someone experienced, palliative care trained, or will it be someone that has just finished working in a department store? That may not sound a particularly nice thing to say but if you were in my shoes you would understand.

We’ve been trying to get more skilled people into the package for months without success. Even more frustrating is when we do identify them and nothing gets done. For example early in the year Debbie identified a young Nepalese girl as being absolutely perfect for this package. She’d just started with them and was already getting good feedback from clients but for some reason was never put into this package until a few weeks ago as emergency cover. She was the girl that I previously commented on, and like Debbie I immediately saw her potential as an excellent carer. Since then I’ve tried and failed to get her added to the team. I am convinced that had the agency taken this and other requests about personnel more seriously we could have easily averted the situation I am now in.

What concerns me now is that I am being told that because of the cost and complexity of my package it is very unlikely that Continuing Care would fund another one like it. I am being told in quite strong terms that we need to start looking at live-in care which is something that I have fought long and hard against all along. It doesn’t work for everybody and I feel certain that it wouldn’t work for me because of the private nature of the person that I am. We cannot just push people together and expect them to get on, and I never want to feel uncomfortable or unhappy in my own home as that is all I have left me. It also fails to give me the continuity I desire as live-in carers rotate regularly.

The problem with having Continuing Care (which is care paid for by the NHS and is not means tested, but is only awarded if the need is health-related) is that your care has to be delivered by an approved agency. In other words the client has very little say in who provides their care. This is different to having something like Direct Payments in which you get a pot of money from the local council (who will means test you and is not relevant in my case anyway as my needs are health-related) to go out and buy your own care. So in other words I will have very little say in what is going to happen next and to make matters worse I am being told by my care manager that even if we could get funding for a similar package to what I have now I would be looking at about eight new people. On top of this she is telling me that she is having lots of problems just getting three calls a day covered regularly for other clients with the two agencies on the approved list.

I feel like I am caught between a rock and a hard place. On one hand I hate the idea of having an endless stream of live-in carers (plus additional staff from local agencies to handle the double ups) who come from foreign lands, stay for a few months and are then replaced with another one, whilst on the other hand I am fearful of going to another agency for day care and getting exactly the same kind of problems as I’m getting now. I feel like I’m trapped in a care system that neither cares nor works properly.

When something like this happens it will affect people in different ways depending on their own personal circumstances. If I was not living on my own then sudden changes in my care package would not have such a deep impact as I would be cushioned to some extent by those around me. But of course I’m not in that situation and so I’m absolutely dreading losing all my regular carers in a couple of week’s time who have by now grown to anticipate my needs to such an extent that everything just works very smoothly. In the time that we have known each other we have all become friends and I think some of this can be witnessed in the photos that I have posted of our evening meals out together. Although it is true that we’ve not been fully up to strength and could have done with at least one more fully versatile team member, those that have been here have given me a degree of stability that I need. It’s going to be heartbreaking saying goodbye and right now I don’t even want to think about it.

At the moment I’m feeling completely crushed and seriously depressed. What else can go wrong for goodness sake? I can’t actually print what I think about an agency that would leave a terminally ill, highly disabled and completely vulnerable person in this terrible situation and at such a late stage in the disease because I’m not like that. But I’m sure you can imagine for yourselves! Can you imagine a hospice saying ‘we don’t want to do your care anymore’? All the worry and stress this has brought on has caused my appetite to collapse. Everything I had set out to achieve two years ago is now in ruins and it is starting to feel like my premonition of spending my last days in the company of near strangers is starting to come true. On days like this I just feel like giving up.


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One Response to Tuesday, September 14th 2010

  1. Jane C says:

    Unfortunately, Mark, this is the world of care agencies. Care staff come and go at the drop of a hat, skills are limited to run-of-the-mill care, not to someone with the complex needs that MND creates (especially if, like Richard, you lose your speech very early on and you can’t even explain those needs) and day care agencies are simply not geared up to providing long stretches of care. We, too, experienced all the frustrations that you are having and in the end, I had to take time off my job for the last three months of Richard’s life to fill in the gaps that the agencies simply could not do – but what happens when you’re on your own like you are, one simply does not know? Our agency threatened the same withdrawal of care on more than one occasion so I do truly empathise with your feelings of despair. 24 hour care will be inevitable sooner or later, so you may have to accept that live-in care will be your only solution, however unpalatable the thought may be. I do hope you can find a workable outcome.

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