By Simon HengI'm a service user because I'm physically disabled, paralysed from the neck downwards, the result of a tumour on my spinal cord, 14 years ago. I was one of the first people in my area to try direct payments and I'm one of its success stories.
Direct payments have allowed me to live independently from social services and care agencies. Now, I'm in control of who cares for me, because I have sole responsibility for arranging my care package - within the agreed budget.
There are dangers, and I get anxious moments; when someone goes sick or missing, for instance. Unlike a care agency, I can't just rearrange my staff - they need their time off.
Over the years I have developed a network of people who are prepared to work occasional hours to ensure that I have continual care. This arrangement relies on my powers of persuasion, networking skills and the goodwill of other people.
Even so, I've been the victim of a growing trend; twice in the last year, I've interviewed for a new carer, offered someone a job, only for the person not to show up for the first day. No explanation, no warning. Someone who had been working for me for a number of months just failed to show up one day last week. Her so-called explanation, I heard, through someone else, was that "I just couldn't face handing in my notice".
These are people who have NVQ level 2 or 3: they have already decided that caring is their chosen career. They knew that without 24-hour care, my life is at risk within hours. I don't understand how they can fail in their duty of care so completely, without a shadow on their conscience. Mine isn't an isolated case. There are cases, documented in this magazine, of people who have died, neglected by carers who fail to show up.
When it comes to reorganising adult social care, I'm right behind the idea of personalisation; it is about empowerment; it is about independence. But it's also about preparing service users to manage their care: it's also about ongoing support for any parts of the process with which people can't cope.
And it also has to be about what's in place when things go wrong. There have to be built-in safety nets to deal with immediate and long-term problems. This has to be written into the green paper, so that it doesn't get ignored.
Simon Heng is a wheelchair user and involved in service user groups
Published in the 26 June edition of Community Care under the heading "Left in the lurch"
I am worried about social care workers who do not understand the needs of their service users and I am horrified when service users are put at risk because carers cannot be bothers to be flexiable.
Social care position is not a 9 to 5 job and it is about enabing service users to be independent, empowerment, equality and opportunity for the individual(s) to develop in the community in which they live.
I am a qualified social worker and I was told by my manager that I am too passinate about the family I am working with. Where some of the people that referred to Social Services are the most disadvantage in society. This make me reflected and certain values in social care practice.
I am the care manager for a care company who employ caregivers to work with our clients across the community. We are a private company who service users can use their direct payments to fund, albeit with a small top up of their own. We are about changing the way domiciliary care is provided, matching regular caregivers with regular clients on the basis of their experience and personality- trying to meet the benefits of direct employment by the service user but being able to cover for holidays/ sickness etc. We have recently won a dignity in care award and are even running into touble with social services because we refuse to do no call less than 1 hour long.
I read your note with interest Simon as so often the "perfect" employee comes for interview, seems so enthusiastic then just does not turn in to work or attend the induction etc. It's hard not to take it personally!! I can't understand why a grown adult would not be able to communicate to me that they might have had second thoughts and decided it perhaps was not the job for them, but for people to do this to you having directly met you, learnt of your needs, made a commitment and still not turned up I think it is so saddening.
I agree it is so important to empower each individual with the right of a tailor made service but measures need to be put into place to protect too, in these seemingly inevitable situations.
Commitment and reliabilty is absolutely essential. If you say you will do something you should do it.
Many years ago in the dark ages I worked as a latchkey youth worker. I couldn't have left primary aged children and their parents down. The problem is that most pay for carers is so poor that it limits who will apply. There are not many of us who work for peanuts championing what we believe in then having children I am lucky that I get topped up by the child tax credit system and so in effect the government are paying for my innovations.
I did a contact on xmas day a few years ago because I couldn't let a child not see her Dad.
I just can't let people down and have felt really ill on some occasions and still dragged myself out to do what I promised....maybe I'm mad and the people who don't turn up are the 'norm'