Finally. I'm writing something. On my blog.
It's been a long, long road. I've been stupidly unwell since....September? October? You all probably remember better than I do. Considering the failed operation at The Other Place last May, and the non-recovery that followed, I suppose we can probably say I've been stuck in bed with a sick bowl and a head full of opiates since about January 2012.
This is not "Sick Girl situation normal" for me when I get this bad. Things stop working. My legs stubbornly refuse to carry me about. My opiate infused bloodstream resolutely refuses to let me interact. With anyone. Can't cuddle my husband, can't speak to my kids and DEFINITELY can't pick up the phone. Not under any circumstances. It rings and my blood flushes cold with terror. I watch it, insistently bringing away on the duvet cover, jumping and twitching with pushy challenges and I let it ring out. Even when I knew my Dad was dying, I still couldn't pick up the phone. Friends visit and I beg Dave in tears not to let them in my room. The room that has become my world. The room that smells of sickness and sterility and decay. The four walls that contain me just as securely as any prison. The room that becomes more peppered with aids as the weeks go by. Suddenly a wheelchair here, a commode there, a sharps bin or six, as reality forces my ever constant stubbornness into submission.
And then hospital. When the spasms of vomiting ripped muscles, left me delirious with dehydration and malnutrition, when the pain shot through "Home-levels" of opiates it was time. Oh God that time. Time to say goodbye to my kids. Each time, with no idea if I'd see them again. Time to say goodbye to freedom and independence and comfort and love, such as they'd become in my narrow existence, in exchange for rigidity and institutionalisation and - if I was lucky - efficient salvation. If I was unlucky, judgement, frustration, pain and fear. Loneliness and battles with the very people supposed to care for me.
The first ward I was on (for four whole weeks) was great. My own room, views of London from picture windows that I could dream my way into for hours on end. Kind staff - indeed some beyond kind, some the angels we resolutely insist on believing make up 100% of of our NHS. Some became friends, which is the very highest accolade I can give. A few hiccups but never intentional. And all the while the chilling, horror-film-creeping realisation that The Other Place had not been right. The patient care had been bullying and cruel and dangerous for most of the 18 years I'd lived out my life in their "care".
I think the biggest change - and one I couldn't really get used to over the whole 10 weeks I spent in their care - was they didn't treat me like a junkie. they treated me like a person with a terrible illness in pain. I justified, and worried, hoped and waited needlessly. They came. Every time. With pain relief. When I needed it. No-one tried to take it away. Or reduce it.
The 2nd stay brought a dodgy sister. We didn't get on. It didn't go well. the ward lacked the compassion and calm of the previous one.
If the NHS let me down anywhere this time it was that good old chestnut - communication. The medics took 3 or 4 weeks to decide I needed surgery. They didn't read my notes or speak to anyone at The Other Place. They bought in the surgeons. Who took another 3 or 4 weeks to decide I needed surgery. They didn't read my notes or speak to anyone at The Other Place either. They couldn't get it together to communicate and push for an operation date. Xmas came and went, I got skinnier and skinnier. My boys started to forget who Mummy was. Just that pale, gaunt hologram of Mum lying in the bed for kisses goodnight. Like a Victorian father, remote and removed. My husband became my carer, never my lover. They became self sufficient as a family, without me. Something that gave relief and pain in equal measure.
Quietly and calmly I repeated, over and over again, "I need surgery", "I need surgery" like the insistent hum of train on tracks - unheard, but there, under all of the rest of the noise and beeps.
Finally in January, 5 stone 10, nearly, dead, unable to walk at all, having eaten or drunk nothing for about 2 weeks, the surgeon hung his head at my out patients appointment and said "I think it's an understatement to say we've left you too long."
He admitted me, set up a feed by central line, set a definite date for surgery and salvation was in sight.
Again, I was in a lovely ward. The nurses really cared but make no mistake - listen up Mr Cameron, Mr Hunt, Mr Lansley - THERE WERE NOT ENOUGH OF THEM. There's nowhere to hide. I'm not Polly Toynbee writing in the Guardian or Benedict Brogan in the Telegraph. I'M A PATIENT. Few will have my insight or experience.
Compared to 2007, wards (and let's not forget, this is in one of the best teaching hospitals in the country with a real emphasis on patient care) are horribly, dangerously and miserably short staffed. BECAUSE THEY CAN'T AFFORD TO PAY THEM MR CAMERON.
Oh, I've seen the political football nonsense you are all playing. The Express, Mr Hunt, they are trying to justify your ridiculous NHS sell off with stories of poor patient care. The Express and Mr O'Flynn rallying to the cause, talk of patients discharged with dehydration or malnutrition.
WELL LET'S NOT BE DELUDED. IT IS BECAUSE THEY ARE SHORT STAFFED. HOWEVER STRONG THE WILL, THERE SIMPLY AREN'T THE HOURS IN THE DAY TO DO EVERYTHING THAT NEEDS TO BE DONE. DO YOU UNDERSTAND MR CAMERON?? MR HUNT?
PEOPLE WILL DIE, IN EVER INCREASING NUMBERS BECAUSE YOU HAVE PUT OUR HOSPITALS IN AN IMPOSSIBLE POSITION. CUT STAFF, CUT RESOURCES, CUT CARE, CUT SERVICES OR GO UNDER.
Oh, you can go on about "cutting management waste" or "streamlining" but as you knew very well, we already had one of the most efficient health services in the world. You can hide behind your statistics, you can obfuscate about "no real term cuts" but you know as well as I do, the NHS needs 6% extra per year to survive. And it's not getting it. AND you're insisting they restructure from top to bottom at the same time.
So this is my experience, as a patient : Some of the deaths will be down to cruelty. Bad practice leads to bullying and cruelty. A ward or indeed a hospital, out of control, that has lost sight of the patients it is there to serve will kill people. Just as they did in Mid Staffs. But let's not kid ourselves any longer - it's happening up and down the country. Until we face this and accept we are only "angels" under the right circumstances, people will die. Lots of them. Our Mums and Dads and Sons and Daughters and Babies and Wives and Husbands will die. Say it again. They'll die. Needlessly and in lonely, desperate misery.
But more will die from cuts. And the trauma will be double. Because the staff who are left WILL care and will simply be unable to do the jobs of four or five. They will go home, every night, knowing they left a patient in pain. Knowing they left them hungry. Knowing they left them lying in their own filth or dehydrated or without vital feeds or medicines. Perhaps their blood slowly seeping away onto the floor, left for a night shift who fight all night, 2 staff short to save a life and never get a chance to staunch the flow. Dying quietly or dying dramatically, we'll all be dying.
Where there should have been 4 trained staff on every night - and several Healthcare Assistants, (HCAs) there were invariably 2 - and one HCA or none. They were usually bank nurses and just didn't have either the consistency or the care to do a good job.
The best nurses were staying 2, 3, 4 hours after every shift just to get things done.
Say what you like Mr Cameron and Mr Hunt, these deaths will be your fault. Every one will be on your conscience. Hide behind your statistics and your lies, but I'll be the patient, in the bed, watching the play unfold. I'll be the one talking to nurses in tears of frustration and exhaustion at 3 am. I'll be the one suffering in pain without a nurse available to bring my meds. I'll be the one watching the old lady opposite waste away because no-one has time to hold her cup.
But you won't need to use the NHS will you Mr Cameron? So you won't care. It's for "them" not "us" as remote and alien to you as pasties and council houses. But you used to didn't you Dave? You used to need the NHS? Because for acute, specialist care, they are the best. All of your private, boutique hospitals can't provide that care can they Dave? At 3am when your child stops breathing and you rush to salvation in a wail of blue lights and terror?
That you would so easily forget your own experiences and deny future parents the same excellence is your greatest shame of all.
If you don't want this ridiculous privatisation-through-stealth, please sign the 38 Degrees petition