Yesterday was Sunday and early spring sunshine poured into the castle all day. I had a lovely weekend of haircuts with my family and joining Leftwing Idiot for a run round the park – typical restful weekend activities.
But there was one less restful activity, something many people don’t have to worry about: going through my Personal Health Budget form as part of my annual review. This support was only agreed in November last year, after completing the original assessment process, which was gruelling, despite everyone involved being thoughtful and responsive.
The process was particularly complex because funding for my care has moved from Social Services to the NHS.
I’ve had social care for over a decade and the review process is always stressful.
The support I receive underpins every aspect of my life and without it I’d be at serious risk of harm, and everything that makes me ‘me’ would be under threat. Of course, support has to be reviewed, but the stakes are incredibly high. This review is also my first under the NHS and being unfamiliar with the process has intensified my worries.
So it was in this context that I opened the form. The review, like the original assessment, is split into twelve different areas covering everything from breathing to mobility, behaviour to nutrition. Each is rated in terms of how significant my needs are in that area.
The assessor overseeing my review, who I don’t know well, and who wasn’t involved in the original assessment, had filled in some parts of the form already. But I thought they’d lowered my ratings in a way that would have put my support at risk. This left me feeling upset and vulnerable.
But, to cut a long story short, they hadn’t lowered the ratings, I’d just misread the form. But I hadn’t realised this before I’d panicked and emailed the assessor. They were quick to respond and clarify, so hopefully it’ll all be sorted out soon.
I’ve been thinking about this experience a lot today and about how quickly I’d panicked. I know I tend to catastrophise, always jumping to the worst-case scenario. It’s something Leftwing Idiot gently calls me out on.
Some of this is to do with how my brain works – I often get stuck in negative loops of thought. Some of it is probably my personality, but I wonder if my life being so dependent on the decisions of others for such a long time has had an impact too.
My support requirements increased just as Austerity politics kicked in, so I’ve only ever known the system under that pressure. Mainstream conversations about Social Care tend to focus on it being a sector in crisis, a problem to solve, cuts to make, there’s little discussion about what it is or what it makes possible. Reflecting on this today I can see how it might have had an accumulative impact on how precarious my support, and therefore my life, feels.
This doesn’t absolve me of responsibility for my own thoughts and reactions, but it is worth acknowledging. So, I’ve made myself three promises that I’m going to try and stick to:
Firstly, slow down, take the time you need to think things through and don’t rush to judgement or action.
Secondly, acknowledge and name your worries. Think about your concerns in a controlled way and identify those that need your energy and attention and those that don’t.
Finally, focus on what you can control, on being kind to yourself, and on breaking cycles of negative thinking. I already know what strategies work for me, but I need to keep putting them into practice.
I’m hoping that these affirmations will help me step away from catastrophe and have a healthier relationship with uncertainty.