Social Care Update!

In my last really personal post, I talked about how reablement services can be (are) really abusive and gaslight-y and how I was told that my care needs had been found to be “moderate” rather than “substantial” or “critical” so I was to be left with no care and no support to find any… Well, I was very brave and I complained to the council. I was prepared to fight, to take it right to the top and get the press or my MP or the Care Quality Commission involved if need be. The council saw that my complaint was very serious. They reinstated my reablement care and appointed me a different and more senior assessor who listened to me and took my (quite severe) mental health problems into account.

Quite a lot more was written onto my new assessment form. A support worker came to my assessment to help me talk about the very difficult and distressing details of what care I need and why. My new assessment, full of details about my mental and physical ill health, was taken back to the council and I was (finally) awarded long term care.

From the beginning of next week, I will have people making sure I eat and wash and look after myself. I’ll even have someone to come round and help me keep my bedroom tidy. With the assurance that I will be prevented from neglecting myself with regard to these basic needs, I feel like I have a foundation upon which to base myself as I try to build a life in my new city. Knowing each day that I definitely will eat an evening meal and when that will be, keeping myself and my surroundings reasonably clean, with these things taken care of I can do anything – write a novel, get a voluntary job, survive the therapy waiting list, go to social events… maybe even get on a bus to somewhere I’ve never been. Without support, those basic needs quickly stop getting met and I have no foundation on which to build a life of new experiences, of practising and learning old and new skills, a life in which happiness is not a fleeting dream but a real possibility.

Less than a hour’s support a day makes that much of a difference to me. Without it, just surviving is incredibly difficult; with it, a life full of wonders becomes possible.

When your council next cuts support for adult social care, as councils regularly do, think about me. Less than £10 a day of council money is for me and many others like me, literally a world of difference.

I write best when I’m hurting…

TW: this post discusses social care, “reablement” services, mental illness including self-harm and suicidal ideation and institutional neglect and abuse of disabled people, particularly of me. Stay safe and don’t force yourself to read it if it could harm you.

I sometimes feel I write best when I’m writing about what hurts me. This blog is full of post about my experiences of living with chronic disabling illness and of living in a world that reminds me over and over again that people like me – whether that’s disabled people, trans people, Jews, LGB people or unemployed people – are not wanted or welcome. I write about what hurts me.

I’m hurting right now and haven’t posted in almost a month. What’s happened?

I am being harmed. I am being abused. I am being… “re-abled” by social services. And they’ve decided i don’t qualify for on-going care. That means my care hours, as of tonight, will be cut to ZERO and any care I need I will have to organize and pay for myself – if I survive long enough to sort something out. (My friends and partners are not going to let me die so don’t worry too hard but I basically cannot be safely left alone for more than three DAYS without completely giving up on caring for and feeding myself. An otherwise identical person with no local friends would be dead or hospitalised within a month with malnutrition. I really wish I were exaggerating here).

For the majority of people who’ve never heard of it or had to go through it, “reablement” is an up-to-six-week long assessment period in which care is provided to a person and (in theory) they are given the equipment and support they need to look after themself. On paper, it looks like sort-of a good idea BUT in reality, huge funding cuts mean people aren’t being given as much equipment as they need, are fighting hard and waiting weeks to see that equipment and are being assessed as needing (as I do) about 5 to 6 hours of care a week THAT THE COUNCIL THEN REFUSES TO PROVIDE OR PAY FOR. And even if all the equipment I could benefit from were provided to me, even if I were given my five hours a week ongoing care to keep me alive… the process of reablement is still neglectful and abusive BY DESIGN.

The people sent to support me were deliberately and secretly instructed NOT to help me and to push me to do things by myself. My every morning wash and evening meal was secretly turned into a battle of wills between me, an exhausted mentally ill person in a lot of pain and a carer / support worker who was often meeting me for the first or second time. They pushed me further than I should safely be pushed and they pushed me every day. And I capitulated and forced my pain-filled exhausted limbs past my limits daily *because when I am scared or upset, my PTSD makes me extremely compliant*. I repeatedly tried to explain to both carers and my assessor that I am exhausted and in pain and vulnerable and that whilst I often physically *can* make myself a meal, I usually really, really *ought not to do*. I tried. My concerns were frequently ignored and now I have no care, not all of the equipment I was promised and a fight on my hands to stay in an abusive system in the hopes of getting less than a MP’s meal allowance a day spent on keeping me alive and healthy enough to do anything at all beyond surviving.

My depression and PTSD have been getting very bad lately and is it any wonder? I’ve been seen by carers and by my assessor in tears and self-harming. I’ve had to get friends to help me in the last few weeks because several times a day I think in all seriousness “I want to die just so all this stress and abuse will end”. Things are literally that bad but for the sake of a few quid the council would apparently prefer to let me try to look after myself alone.

And it all links back to the questions on the PIP and ESA forms that apeear in my letter box at irregular intervals and the number of different GPs who’ve happily signed my sick notes yet the DWP still want to get Atos or Capita to assess me in case all 6 GPs were wrong and the comments of the likes of Lord Freud who thinks people like me shouldn’t be paid minimum wage but also shouldn’t be able to live off benefits… it all comes down to having to fight and plead and abase myself daily to show that I deserve to live. It all comes down to narrating over and over and over again how my illnesses and disabilities affect me and how many doctors I’ve seen and getting professionals to write down exactly what I just said on pieces of paper that other professionals may or may not take into account… Will I be deemed worthy, fit for life, this time? And if so, for how long?

More about food, ethics and mental health

Further to my previous post, there’s more to say about how changing what you eat an affect your mental health. I don’t mean in the “Eat more fruit to be less depressed” way (though getting enough vitamins and good stuff into your body can certainly help you to feel less bad).

Food is an essential and more or less inescapable part of our lives. For most of us eating is both a frequent and a multi-sensory experience and an experience capable of being very pleasurable. We combine foods to make a near-endless variety of dishes with their own tastes and smells and textures. Food is wrapped into our cultures and our relationships. Because we eat so often, what we eat can often become intensely associated with who we eat with, where we eat and how we feel when we eat. Certain foods may remind us of people and places from our pasts and stir up memories that may be happy, sad, nostalgic or traumatic. Some foods may help us to feel loved and welcome; other foods may make us feel disgust. For some people, particular foods may be so strongly associated with a painful or traumatic event that they cannot eat them.
In short, food is much more than fuel for our bodies and sustains us in more ways than merely keeping us alive. Food has a huge and complex role in our emotional and social lives.

So when we change what we consider to be food, that’s not the only thing we’re changing. Inevitably, when changing what we choose to put into our bodies, we are also changing routines and practices we didn’t know we relied on to help us feel safe and grounded.

This goes for whatever reason to change a diet – a new intolerance or illness, a pregnancy, living in a new country or with a spouse’s family for a period of time, a wanted change to exclude some foods and/or include many new foods. Things change in ways you may not have anticipated because for many of us what we eat and who we are are tightly wound together.

When I choose to become vegetarian, I found myself desperately wanting foods from my childhood. When I was being tested for coeliac disease (which I turned out not to have) I found myself getting teary-eyed at the idea that each croissant I ate might be the last.
Sometimes we discover that Christmas just isn’t Christmas without a roast or that going to the pub with work colleagues doesn’t feel right any more after we’ve stopped drinking alcohol. Or that lovely seaside town you went to as a child just isn’t the same without the fish and chips but the idea of actually buying and eating fish now disgusts. Things we rely on change when we change what we eat and change can feel scary and overwhelming.

All that change, much of it unanticipated can be stressful.
Stress can also come in the form of other people’s reactions. Some people will unexpectedly take it personally that you no longer eat what you did. In rejecting the food they make for you or the cafe they eat at, you seem to be rejecting them and they react as if you have. I lost a boyfriend by becoming vegetarian – he expressed his feelings for me by making me food and now I was telling him I really didn’t want bacon on toast or pasta with bolognese and he couldn’t help but take it personally.
Others will feel like you are judging them if you make an ethical choice for yourself. Some may feel like you are rejecting their culture or religion or even that you are deliberately trying to upset them.

Even when you are not rebelling or rejecting anyone, dealing with other people’s fears and feelings on top of your own feelings and the difficulties of adjusting your diet in a world actively trying to convince you to eat things you no longer wish to consider food is understandably difficult and painful. And stressful as fuck.

One more way that changing what you consider food can have effects on your mental health is through hunger. Being hungry is unpleasant, sometimes even painful. Many people will associate feeling hungry with bad things from their past, times when they haven’t been cared for and have been unable to care for themselves. Times when there was no money for food. Times when things went wrong. Even if you don’t have those associations, being hungry for more than just a few minutes hurts. And hunger can be a regular occurrence in the first few months of a new eating style. Who knew the veggie pub closed on Mondays? Why did you pay the entry fee for the pie festival before making sure there’d be something you could eat? Your friend was adamant that she could and would make something you could eat at the party but you arrived late and it’s been eaten? Hunger happens. It’s distressing when it does.

For all these reasons, it’s important to make sure you take care of your mental health when changing what you eat. Any existing problems might become temporarily worse as your life changes in unexpected ways. Other people’s problems might try to become your problem (Captain Awkward has many good posts on this but this one is about food). You may fall into the cycle from the previous post.

The solution, mainly, is to be aware that these things might happen and watch yourself to make sure you’re as mentally healthy as you can be. Remember that changing what you eat is HARD WORK and it will get easier but it’s okay to cut yourself some slack. Be gentle and caring towards yourself, you’re doing something difficult.