The personal cost of independence, involvement and engagement in Social Care and Health.

So here I am sat in another waiting room, for another appointment, another wait, that’s six just this month. When you have a muscular degenerative condition, which leaves you with just being able to use your fingers, this becomes part of your life.  But rather than waste the time, I reach in to my pocket pull out my phone and start reading the next lot of emails. A lot of these relate to disabilities, here’s  one with a sixty page document called universal personalised care, implementing the comprehensive model by the NHS, on how the future of personal budgets are going to be. It's a well written document and if you’re a geek on social care/Health freak like me quite interesting. I'm reading this as I'm hoping to go to a co production meeting in our authority sometime soon where they will be talking and discussing the new plans.  However for most lay people without a background in reading policy and procedures I guess most will give up without even looking at it, and not get involved.

The reason being, is the cost, not a financial cost but just the cost and drain of it all. I amongst my colleagues have for over 10 years been talking about personal budgets, co-production, and personalisation. We don't do it for fun, or even a salary, (though there are more than a few charities and voluntary organisations  who ask for volunteers a lot, but those sitting at the top in those make a comfortable salary from it) we do it as it’s our life. These policies are dictating how I may or may not live my life. Just think for a minute someone sits and writes a policy of how you are going to live your life. They may even ask you about your views, but at the end of the day these people are making decisions on whether something as simple as If I can go out or not. In my case even attend hospital appointments.

On top of this care is being slowly eroded the argument is personalisation brings more Independence choice and control. It should but it doesn't, as the support and infrastructure needed to have these things is just not available of if it is then its basic and barely does what it supposed to. An example of this was when it was decided to close down day centres. Places where disabled and elderly could go to meet up, get involved and stay active. The argument used was that these restricted people’s choices and they should be allowed to choose what they wanted to do. Yes brilliant, but in the absence of support to do these things whatever they are, the disabled and elderly are now left in isolation. This report I'm reading suggests this will be improved by having community officers in GP practises, who will help the staff direct people to local resources. The issue I see with this is the resources either don't exist, or they need organising (which is what the day centres did). In effect they are trying redirect the same community feeling of old days without putting in the resources to carry them out. I'm not saying go back to day centres, but what you do need is community catalysts people in the community who will organise and put on events activities for people to participate. Without these and without the funds to support these, I see nothing improving.

Now that's most of my day, taken and there's my view of the report. If you wanted it, but do you think that's it? Sorry no! In order for me to have a semblance of a life I also have to do my own recruitment, staff management, interviewing, monthly records for leave sickness, pay role, tax, Ni, pensions, training and have to keep up to date with all the rules and regulations of managing a small business employing up to 7 people at a time. It's not easy. If someone was employed to do what I do to just have a life you'd be paying me a salary of over £35k min, And I don’t get a penny for it, on top of that every year I have to be  assessed and my expenditure is checked all made to make me feel a drain on society. Even though managing my own care is substantially cheaper (according to the above report) than being in care, and much cheaper for the authorities they don't make it easy. You have to prove and receipt and document everything. Even if you have been doing it for years and years. Remember this is so I can have my independence, choice and control, or the illusion of it.

The actual physical and mental drain to someone who already has multiple deliberating conditions, is huge and barely conceivable. I guess what I'm trying to say is even though we have to fight for our Independence, choice and control and we get it. I's not easy. No one counts the drain and effect it has. It's a shame I read daily and my own enquires in to support for those who manage themselves often leave me to believe, where just not appreciated. An example the local budget for support services to carers is huge compared to those who manage the care themselves. Carers often rightly get a lot of recognition, but often those who manage their own needs themselves (many of these people also have caring responsibilities to) get barely any recognition.

Now I know a lot of work is done by a lot of great many organisations and disability groups in trying, and I do mean "trying “to get our voices heard and ask that our involvement is meaningful and not just talk or meetings. For me though please I ask stop talking and start doing or let us do it. Give us the control in commissioning and running the services, see what we can do to improve our lives, it's more than a job to us, or a carer it’s basically my life, why shouldn’t I have the choice and support.