The Coming Year

My Care Manager asked me the other day if I had any plans for regular commitments over the next couple of months.

In some respects, I am very lucky to have someone to ask me this kind of question, someone that will play a role in helping me to manage my life.

I suppose the reason for this is the fact that I am severely disabled, and as a consequence I have a team of carers that enable me to live independently. I can do this because of the way in which West Sussex County Council runs a pilot scheme entitled self directed support. What this means is that instead of receiving care support through agencies appointed and monitored by the County, I receive my care budget direct, and I am able to employ carers directly myself.

I currently have a staff of about seven people that between them manage all of the things about my day-to-day life that I would not be able to undertake myself, like washing and dressing, preparing meals, and the person that I have appointed to be my Care Manager has additional responsibilities concerning the co-ordination of timetables for who is working on which day, and helps me to ensure that I manage my team of carers effectively.

It is a new way of working, and gives me as a disabled person much greater continuity of care, and I believe gives my carers a better quality of working life. Because the alternative is to work for an agency, which usually means having to travel a great deal and visit numerous clients according to a schedule determined centrally. And the one thing that seems to be common to all agency workers, is that they don't have the luxury of sufficient time with individual clients.

Self-directed support it is a way of countering this, and in my case it really does work. The County has appointed an agency to support people like myself with things like a payroll service, so that wages and tax are properly accounted for. In some respects, the bar has been lowered so that I can employ almost anybody to work for me in delivering the care I need. In practice, of course, training is given so that things can work smoothly and effectively and of course safely. Two of my carers are what you might describe as professional carers, that have worked for agencies for many years, and have consequently had the kind of professional training you would expect in a professional carer.

I have to have employer's liability insurance, and in some respects I am the chief executive of a small business, not-for-profit of course, and with particular objectives partly set by myself, through my participation in the writing of my care plan. There is nothing different in this, than if I were to be in receipt of care provided by agencies approved by the County, except by having a care team that have been appointed to meet my needs as well as to meet the requirements necessary for the expenditure of any public money, I am empowered to a far greater extent to be able to set out the kind of life I wish still to achieve.

Just because I am severely disabled does not mean that I don't have aspirations and a will to achieve certain things. Of course, what those things can be may well be prescribed to a greater extent by the limitations of my physical capacity, but if this is an experiment in how care and support can be organised more effectively, then in my case it is certainly an effective one.

I am able to benefit from continuity of contact with my team of carers, and this in itself is a great advantage over receiving time-limited visits from overstretched carers who have to achieve an almost impossible schedule of visits. Which often fail to take into account the social needs of the person receiving care, and for the sake of limited budgets, provide simply the minimal level of support required for survival.

In some respects, it is easy to make the assumption that this is a better system, without having hard evidence to demonstrate as much. It just seems to make sense that instead of an external agency taking a profit from the delivery of care, that the individual making their own decisions (within clear boundaries laid down by the assessment procedures of local authorities) will plan for more effective outcomes for the same resources.

It is a very different way of working, and not without its own set of problems. There is still a need to ensure that carers have the right skills to be able to do their work effectively. I suppose one answer to this is that it is easier to train someone for the specific needs of one individual than it is to train a carer to meet with every possible need they might be required to fulfil.

I have certainly found it possible to plan my life more effectively as a consequence of receiving support from a focused team of carers. I suppose I have been fortunate to find a team with a range of experience that ensures I am more well cared for. The people that work for me have a wide experience, and in most cases some training has been provided to ensure that they can fulfil all of the requirements of my care. For example, the safe operation of the hoist that has been installed in my bedroom, to enable transfers to my electric wheelchair from my bed.

There is a substantial team beyond those that I directly employ that I can call upon for specific help and support Whether it be from my occupational therapist, who has been able to supply me with equipment like the hoist that makes lifting safe both for me and for my carers,or my local physio.

I suppose I am fortunate in that my condition, multiple sclerosis, is fairly stable and does not require the kind of medical interventions by way of medication that require specialist medical support. My GP provides all of the medical care that I require, and occasional visits to see consultants are something we are all fortunate to be able to receive in the context of a National Health Service.

Perhaps I am also fortunate in that I have always had plenty to say for myself, and at present my condition does not affect my capacity to speak. Hence my ability to write this blog with the aid of voice-activated software.

That I have had previous experience of managing my workplace has in no way prepared me to manage the situation in which I am cared for. Hence, a new (for me) need to have among my staff someone that can take on the role of my Care Manager, to ensure that where I need to be assisted with the day-to-day management of my care, there is someone I can depend upon to help me to think things through, and where necessary, to challenge my thinking.

It can't be an easy task, I was never very organised when I was totally independent, and in truth I am dependent now on other people for virtually everything.

That I can express myself is one thing, but no amount of life experience can prepare anybody to be able to live life to the full, when almost everything is a matter of negotiation and compromise.

Don't get me wrong, my life is still just as full as anybody's with the issues we must all deal with, not least of all clarifying what it is we wish to achieve. In my case, this is particularly necessary, because I need to organise someone to help me achieve those things I wish to achieve.