Like situated people.........

I passed a care home the other day, out in the hills 'where they're meant to be', tucked out of the way, where the cold wind can blow the ails & evils from them.

It reminded me of one of the first 'social care' books I read, it gave me a different perspective when I was 16 years old & trying to make sense of social care & what it meant to me.

The most intriguing line that I still remember some 26 years later........

A total institution may be defined as a place of residence and work where a large number of like-situated individuals, cut off from the wider society for an appreciable period of time, together lead an enclosed, formally administered way of life

At least back then they were honest about why they built these 'institutions', it was a belief representative of that period in time; but nowadays the social care systems belief is dressed up in a myriad of pretty colours and matching curtains called 'extra care', they purport to be inclusive & for the greater good, yet they are recreating Erving Goffmans 1961 description of asylums, where a large number of like situated individuals are cut off from society for an appreciable period of time............

You see, they recreate everything a person needs under one roof, no one ever has to leave, confined to a structured routine of hand overs & medication rounds, lost in corridors & closed doors; Goffman wrote that book in 1961, 55 years later we have taken a huge step backwards in supporting older persons....ah but we're dementia friendly & cheap they say, ah that's ok then who cares what you do to people as long as you're cheap......... We are a victim of fat cats profiteering in a fictional economic downturn; this is merely Social care excellence framed in a thatcheresque brand of profit before people, lock them up, tie a pretty bow on it & the public will never know..................

A little about me & a little about them

I haven't blogged in a while so I thought I'd get back in to it & share this little story before I get back on my soap box & get ranting about social care again.

There was a time before I was diagnosed and given the label of crohns / colitis & its myriad of ailments it brings along for the ride that I thought I could change the world one day at a time, one person at a time and never really stopped to think; I used to look around and see things, people that needed me more than I needed me, I would see problems that needed resolving, issues that needed fixing, but until these last few years I never truly understood what it felt like to be in the position of needing fixing of being broken.

I have empathy, compassion and understanding, but I was missing the component that meant I truly understood, I never knew what it was like to feel broken, to feel like something was missing, to drag your sorry ass through each day, never knowing which part of you would show up; ok, so I'm not dying, so let's not be melodramatic about it, I take 21 pills a day plus a couple of hydration sachets to keep me going, but there are days that I think fuck it, I'm done, no more pills, let this bastard consume me, let it win, and for a moment you feel powerless, empty, broken, alone, these are emotions that on some days I can shake off and on others I have to let them win, you may not see it winning, but inside its winning; but knowing tomorrow I may have a chance of kicking it's ass again, so I sit, wait and allow tomorrow to pick me up again.

You see this feeling of being powerless, of being mentally, emotionally and physically exhausted leads you to understand that I'm human, I'm frail, I too need help from time to time, I too need someone to put their arms around me and tell me it 'I know you're not ok, but I'm here for you' I never needed that before, I never needed or wanted someone to be here for me, but now I think I do, so now I think I understand that human emotion of being at a point where you need someone else to get you through, will it make me a better person? I hope so. Will I understand how difficult it is for those more vulnerable to want or to accept our support? Definately, will I start accepting the days where I don't feel well & stop replying 'I'm fine'? One day, maybe...........

The moral of the tale is that we often assume people want and need our help; the truth is that if they had a choice they wouldn't want our help, they wouldn't want us to intrude on their personal space, it's undignified to invade a once proud person life thinking we know better, the truth is we don't know, we'll never know & we'll never know until we're broken and so powerless that we have to concede to letting some jumped up unqualified brat wash our bollocks in public; imagine how low your heart has to sink to allow that to happen.

One day, it could be you!

Care act set to fail

Change is an inevitable that is influenced in essence by demand, this is a reality that we see up & down our high streets, on our televisions, in fashion & our taste

Consumers create & drive change; if we fail to notice and or respond to change then consumers vote with their feet; to survive you must be responsive.

BUT, what about social care? Who really drives change?

With the introduction of the care act in a couple of weeks it is very clear that it's not the users of the service.

Whilst there are many points in the act that I 'think' I welcome, I can't help but think that social care will be driven down market, with greater focus on outcomes (in my view), being used as a smokescreen for more red tape, reducing direct care hours & increasing the reliance upon assessment & paperwork. Now don't get me wrong, assessment & paperwork are integral to the delivery of quality social care, but not as important as utilising the skill, creativity & passion of a skilled workforce, in delivering outcomes directly to the individual & not to an outdated even though it's just be updated) CQC regimen.

The act itself claims to put the individual at the fore of choosing the assessment process, meaning they are in complete control of how & where to spend their finances, BUT as they say the devil is in the detail, whilst in words this sounds good, the reality is that this is yet another tokenistic approach to putting people in control, as ultimately local authorities will decide what is in the persons best interests even where the individual self assesses........ I believe they have used this 'get out clause' to ensure that yet again they can use this as a driver to ensure that they have control of the ever dwindling purse strings; given that most if not all councils refuse to go over budget, even if this means the quality of care for the individual is reduced.

Ahhhhh but some argue the section which strongly promotes & urges the use of advocacy to ensure that users of service get the right funding, the right support & have total control over their lives BUT, we have to remember that social care covers hundreds of thousands of users, yet the national budget set for advocacy initially stands at £14.5 million, so yet again, insufficient funding to ensure individuals are supported to exercise their rights.

So all in all yet another piece of legislation that promised so much fails to deliver total person centred control, this in my opinion is another nail in the quality coffin of social care.

Off track.......IBD

A little insight..........

Drop your pants, lie on your side, bring your knees to your chest aaaaannnndddd relax, at that point your backside clenches & you pray the drugs kick in............they don't & suddenly in a matter of seconds your dignity is gone forever, everything is on display & to make matters worse they fill you bowel & colon with air & what goes in must come out & it does with the force & sound of a jet engine which rattles around the operating theatre, there's no controlling it & it continues as you get to spread your legs further, meaning the farting is accompanied by the squelching as your KY jellied butt cheeks are peeled apart to allow the scope to manouvre the first bend of the colon, again you pray the drugs will kick in.....,,,, they don't at that point scope scrapes it way further round, your legs are then pushed back & you're on your side again, just a few squeaks of air escape this time & the bloody damn awful pain is replaced by the fascination of seeing your insides projected on to the big screen & the inflammation in all it's glory, 'you're doing well' says a voice from somewhere 'when will the drugs kick in?' I quickly reply, the nurse laughs 'if they haven't by now they're not going to & it's too late to turn back' at that point I'm sure the words 'you b******' escaped from my mouth without me knowing I'd even said them, fortunately that was one if the tamest things she'd been called.
Then came the taking of the biopsies, 'you shouldn't feel a thing.....' Again the Tourette's kick in followed by a round of laughter, then a second snip followed by more profanity, this happened 12 times in total & now the whole procedure was to happen in reverse & by god did it scrape & burn, legs twisted in reverse followed by more farting & just when I thought it was over, I'm told 'I just want to massage your bowel, now even if you were sedated it would hurt a bit, so, relax & take a big deep breath in' followed by excruciating pain, 20 seconds later the words '& you can f*** right off' came from my mouth, she continued to press, again the words 'I said f*** off' as I attempted to force the scope out of my backside, which is nigh on impossible as this tiny nurse who was stood by my side showed the strength of 10 of me & pinned me down with a smile & it was over.........
Now rewind 72hrs & the diet of boiled chicken, boiled ham & water commences, it is not bad for 24hrs, getting a bit dry by 48hrs & shit by 72hrs, then at 7am on the Sunday I get to enjoy my last cup of tea, without sugar, without milk, needless to say it goes down the sink. An hour later 2 senna tablets are washed down with the first pint of water; water was something I was later going to hate the taste of after being told to drink 2 pints every hour. I head back to bed & a few hours later the odd rumble in the guts begins & it's soon time to down the first pint of sickly lemon flavoured solution followed by another pint of water, all is good the 1 hr later, bang, the world comes flying out of the backside at a force that causes splash back that you could not imagine & the stench is almost unbearable & just as I'm about to step in to the shower, bang, it's coming out again this goes on & on & on until it's time to drink the next pint of the sickly solution, by this point I'm using medicated wipes & sudocrem, little did I know that this was just the beginning & there would be points during the early evening that I'd be running to the toilet as it trickled down my legs, this continued until around 2am by which point I'm wiped beyond belief & had to be up & ready in 5hrs to head to the hospital.
A bit crap really considering if I'm lucky I'll only have to endure this yearly, if I'm unlucky it will be 6 monthly. Now some may think it's a bit undignified to be as candid on a blog, but compare this to being drained most of the time, shoving steroids & antinflammatory suppositories up your backside four times a day or being late for work because you have to stop en route & spend an hour in a cafés toilet with crippling pain or giving your team instructions through the toilet door because the diahorrea kicks in or you have to rely on your 16yr old for the basics, there is no dignity left & there can be no shame in telling people what this awful disease is like, it's crap, literally, it strips you of everything, physically, emotionally & financially, it makes you think you feel ok & are getting some of the real you back then slaps you around the face until you're doubled over in pain, it makes you go to the toilet until it hurts & you can't face it anymore (32 times is my record so far which resulted in putting Ice cubes inside myself to stop the burn), it makes you cry, almost sob for no reason, it makes you wake after only a few hours sleep no matter how tired you are, it makes your memory play tricks until you find yourself making notes just to remind yourself of simple things, it makes you have days where you feel like you've nothing left then it takes a bit more off you, this disease is a BASTARD!
But, I'm not bitter, I'm one of the lucky few that got caught early & despite having side effects & causing other ailments I got put on a mixture of meds until I was sick, but they've kept it from spreading thus far & despite how I may feel some days they're doing a good job of making things manageable, others aren't so lucky, some face major surgery & years of readjustment & only two weeks ago the IBD community lost a life to this disease, a young beautiful girl was taken from us because so little is understood about inflammatory bowel disease, a tragic loss of life.
The biggest misconception about this disease is that people think I look ok, I don't look ill, the truth is on a lot of those days I'm doing all I can to hold it together & get through until I can get to my bed again & take more pills ready for the next day.
So spare a though for sufferers out there & help where you can by sharing, caring & showing some love as we don't need anyone's pity.
Thanks for reading

Where did it all go wrong

Recently I've had the fortunate privilege of having to take time out of social care for health reasons. I say fortunate because there were many unanswered questions in my head which were somewhat confusing, particularly in relation to what is going wrong in social care? Why does it seem to be in such a rapid state of decline in terms of standards & social worth.
Now let's be honest, it would be all too easy to blame the current economic climate driving down pay, eroding terms & conditions etc. we all know that during times of austerity societies most vulnerable are always hit hardest, but to be honest it's really pissed me off listening to providers procrastinate about margins getting tighter, markets failing due to the economic downturn etc etc etc now I'm not naive enough to think it doesn't impact but the fact that providers continue with this lame excuse pisses me off!
During my period of reflection I feel the answer is far simpler & it is this;

'We have created our own culture of competition which itself breeds fear, when we should have been embracing the culture of sharing'

What happened to passion? Creativity? Desire? Doing something for social good? These are the basics of social care. So to cut a long story short, I want providers to stop whining, stop competing, stop trying to undercut each other & embrace a culture of sharing, of partnership, developing trade offs & most of all providers should get their heads out of their arses & work together, just like we used to & for the greater good, we work with & for vulnerable people & they deserve better.
So let's stop competing & start sharing.

Person centred approaches towards staff

Positive person centred approaches towards staff inspire creativity, drive & a belief they can be the difference they wish to see.
Believe in people & they will in turn believe in themselves!
This our gift to the team, follow the dream ..........

Social care in 3 steps

Step 1: listen

Step 2: watch

Step 3: learn

Don't over complicate it, social care is easy! People complicate it!