2011 - Year of the People

Those French eh? They'd take to the barricades over anything. Just close a quango or put up a tax and they'll be out on the streets by the million.

Shame us Brits are so timid eh?

Well, no, actually.

We might have avoided full on Revolutions, but I think you could argue that, throughout history, we in fact achieved more through our unshakeable belief in democracy and direct action.

The Jarrow marches, the Tolpuddle Martyrs, the Suffragettes, the early days of the Labour Party, Poll Tax, Iraq - the British people have decided their own futures peacefully, forcefully and effectively. We might ignore the flotsam and jetsam, but when it really counts, we get what we want, and the underlying theme that unites all is justice.

As a Nation, we simply won't accept injustice.

We've heard a lot from this coalition about justice. We were told the cuts would be "fair", we were told that fairness would be "wired in" to every policy, David Cameron himself assured us that any minister pitching policies that were unjust would be sent back and told to try again.

Perhaps this word "fairness" was so central to government announcements, precisely because ministers knew very well that injustice was the one thing Brits wouldn't tolerate.

Students don't think 9k tuition fees were very fair.
Sick and Disabled people don't think scrapping most of their support is very fair.
Those on low incomes don't think the VAT raise, Housing Benefit cap and benefit freezes are very fair.
The elderly don't think cutting care provision is very fair.
Dying children don't think cuts to hospices are very fair.

2011 will be terrible. The coalition have chosen the most vulnerable groups of all for their cuts and history shows us that when us Brits are attacked, we fight back and we win.

There is a murmur, a stirring, a slow, blinking awakening that is warming our hearts and restoring a sense of power to the people that some feared was lost forever.

We are realising that the world has changed. Media is now in the hands of us all and protests or petitions can be planned at the tap of a keyboard.

So this is my New Year message to Messrs Cameron, Osborne, Gove, Hague et all :

Go back to that think tank and make very sure that your plans are fair. If they aren't, you'll find that British people will cast you aside. Not with Gallic passion or Mediterranean ease, but with a much more effective British steel and determination.

2011 will be the Year of the People. May they achieve everything they set their minds to.

Patient Care Will Suffer

As we all know by now, patient care is suffering already (comprehensive analysis coming soon)

Still, it's always nice to see someone else trying to warn people too.

This article reflects everything I'm saying about patient care. We have to stop this.

http://www.politics.co.uk/news/health/nhs-staff-cuts-care-will-suffer--$21386443.htm

A race to Trump

Dear Mr Genius came to see me yesterday, just 2 days after my operation and said I could go home as soon as I passed wind!
This is an absolute prerequisite of recovery. The bowel paralyses during major surgery and wind is the first sign that it is waking up.
He even made sure that my discharge letter was all ready in advance, so that I wouldn't get stuck if I farted on Xmas day.
Sure enough, the first thing I did this morning was trump. Yipppppeeeeeee!
After much waiting for a confused pharmacist, we were finally good to go by about 3pm.
The ever constant Dave made me a bed on the backseat of the car and drove me home. (very quickly, it was agony!!)
We kept it a surprise for the boys. You should have seen their faces when I walked into the lounge at about teatime calling "Surprise, we're home!)
Priceless.
I'm exhausted but it was so very, very worth it. I don't think I could have had a better Xmas, never mind about them.
Home just 72 hours after major bowel surgery. Now that has to be a record.

Ouch!

That's pretty much it really.

Xxxxx

Back from under the knife

Hi all,

Dave here. Just to let you all know Sue is out of surgery and resting quietly,(well as quiet as Sue can be!!)
I'm sure she'll be back at the keyboard soon, if not I expect I'll be taking dictation.

It's a relief this bit is over, hopefully there will be no "events" this time......

Zero Hour

As Mike N might say "I'm going dark"

Start your prayers......Now.

Happy Christmas!

As regular readers might remember, today is Christmas Day in the Marsh house.

The boys are a delight - just the right age to love Christmas the most.

We've had stockings and presents, the sideboard is groaning under the weight of sweets and nuts and oranges and chocolate. Both sets of grandparents are here (a million more presents, lol). My oldest (6) is genuinely impressed that Father Christmas would make such a special effort just for him and his brother. They love each of so much, that they keep giving each other the presents they unwrap!!

Where the oldest is quite reserved, our nearly-three-year-old is so excited, I image he'll be sick shortly. He hasn't stopped eating old muck since he got up this morning - there are chocolate bars all over the house with one bite taken out of them, lol.

Tonight, I've booked my favourite restaurant so that our entire family can be together. I've been a great supporter of the restaurant since they opened a year ago. They know I have Crohn's (we've talked for hours about how passionate we both are about  cooking from scratch with nothing but natural ingredients. I've always thought it's the thing that helps me the most to control my symptoms.)

When I called to ask about booking the whole restaurant tonight for a private party,  The chef reminded me they were shut on Mondays. I was gutted. I'd so wanted us all to be together and there was no way I'd be getting out to buy any presents this year. I'd thought that by the time we'd bought everybody's gifts, a turkey, booze, veg, cheeses, sauces, puds, pickles etc etc etc it would  be cheaper just to eat out. It also  meant my Mother-inLaw or Mum wouldn't have to go to all the trouble of cooking the Christmas dinner.

Most importantly of all though, it would have been a way for us all to be together - Grandparents, cousins, uncles, aunts, new babies, girlfriends or boyfriends, children and treasured friends.

A few minutes later, Zek, the chef, called back. He wanted to open the restaurant anyway, just for us!! He'd worked out a menu of all my favourites and costed it so that I can't believe he'll do anything but break even. He said they'd do turkey and all the trimmings and if I let him know this morning exactly how many guests are coming, they would push the tables together to make one cosy, family dining table. "We'll make it all really nice and Christmassy for you" were his exact words.

Just when I lose hope with people, someone, somewhere does something so kind it restores my faith in human nature.

For his incredible kindness, I'm sure you won't mind if I plug him shamelessly here.

Crescent Road Cafe, Crescent Road, Worthing.
01903 204194
http://www.restaurant-guide.com/crescent-road-cafe-restaurant.htm


It's not just the best restaurant in Worthing, it's one of the best restaurants I've eaten ever eaten in. Zek is a genius and if you ever make a booking, I can assure you, you'll be blown away.

Coalition Stew

Serves 60-65 Million

You Will Need....

57 Lib Dem MPs

29 Ministers, 23 of whom should be Millionaires. (If you can't get any Millionaires, then Billionaires work well too.)*

4 Women 

1 Slasher

1 Seller of Snake Oils

1 Laws

1 large Westminster with a tight fitting lid

1 Clegg, thoroughly beaten.
Geeks to taste.

The recipe is even more delicious with the addition of a spice mix. I like to use these but you can always add your own  :

55,000 Students

15,000 servicemen/women

2.5 Million Disabled people

10,000 Teachers

40,000 Police Officers 

-Finely chop the Lib Dems until they are dessicated. 

-Pick 4 women at random and smother them with the remaining 25 males. When you've finished, leave them to stew in a remote room.

-Add the spice mix and stir constantly.

-Meanwhile, combine the Seller of Snake Oils with the Beaten Clegg and mix together thoroughly until smoothly blended. (I find Twitter good for stirring this.) Make sure that the Clegg is well incorporated - you should no longer be able to see a trace.

-Finally, tie up your Laws in a small muslin bag and simmer until the stew reaches boiling point (Don't forget to remove before everything goes into the Westminster though - they crumble if you don't .) Add geeks to taste.

At this point you can sit back and leave the mixture to ferment for around 12 months. It's worth remembering that Westminster ovens are very efficient heaters though, so the stew might be ready in 10 months or even 8.**

All that's left now is to cover the whole thing with Murdoch, making sure there are no gaps at all, and sprinkle Liberally with broken promises.  

*Millionaires are in season at the moment, so you shouldn't have any trouble finding them.

** If your stew tastes bitter, you might find that you put in too much faith. There's not really much you can do at this stage, so it'll just have to be something you remember for next time.

A Battle too Great.

It's nearly half past two on Friday.

My GP is off today and his colleague refuses to do any of my scripts til Monday. Thinks I'm just a junkie. Hasn't read my discharge papers or my imminent surgical admission notes.

I rang the ward.

Nurse told me none of the Gastro doctors knew me, they'd all changed rota and it "wasn't their job to tell GPs what to prescribe."

Unless someone sees sense in the next 3 hours, I'll spend the weekend writhing in pain, delirious and crying.

They're just cruel, cruel bastards that's what they are. I knew this would happen and it is. What is the point of me fighting all of this.

You never, never win.

Update :

An hour later, I spoke to my specialist nurse who had to call the surgery. She spoke to a locum and explained that I would be having major bowel surgery on Wednesday (all in the discharge letter) and this regime had all been agreed with my gastro team and my GP (all in the discharge letter). She confirmed the doses and frequencies (all in the discharge letter.) My mother-in-law is at the surgery now, so fingers crossed all will be well.

I knew when they discharged me that this would happen at some point. It always does. It's humiliating, upsetting and frightening. I have a solution to STOP it happening - yet another post for my "White Paper".

Nurses

I am acutely aware that I keep promising a post on nurses and it never appears.

I wanted to say that the reason is not a lack of appreciation, but a reflection of the fact that I need to research so many facts and dig out so many statistics. (Also because of a rather pathetic lack of technical ability on my part, but that's another story.....)

In the meantime, perhaps I can at least offer this roll of honour to some of the incredible, wonderful, special people who have so often done so much more than their job. They have saved my life, restored my faith and done so much more good than they will probably ever realise. **

So just for a moment, I remember.....

Sian, who spent the best part of a week tracking down a PCA pump when an enormous abscess had me delirious every minute of every day.

Marie, the student who ran a ward single handedly until, in the end, she ordered 2 sisters to come and stay until her patients were comfortable.

Jayne, who whizzed around the bays so efficiently, we offered to buy her roller skates.

The dear night nurse who spent all night going from bed to bed with a little torch, checking that none of us were laying awake in fear or pain and making cups of tea or finding time to sit and chat if we were.

Bev, The best ward manager I ever knew. When a mistake was made with one of my meds, she asked every nurse that came on to every shift what the correct prescription should have been. If they weren't sure, she offered them extra training.

Sylvia, Who held my hand for three hours as I screamed in pain, crying with me.

Alison, She of the "I just nearly Died" post for her warmth and obvious empathy.

Sarah, Who runs my surgical ward and is the fiercest patient advocate I've ever met.

The male, Asian nurse, who actually used to ask me before drug rounds if I needed pain relief.

The beautiful, Philippine nurse, who came within seconds when I collapsed in a toilet.

Nicola, the student who was so curious to learn


Jo, the practice nurse at a surgery who was always so friendly and kind.


Alison 2, who has given her entire working life to offering chronic patients specialist care.

Fran, as above. Both are well known worldwide for their research into bowel disease. It's causes and it's treatments.

Another Marie, who understood so well why chronic patients need totally different care to acute patients.


The kind HCA who left me cigarettes for when I woke up in the morning, just because I mentioned in passing that I'd run out.

I'm sure there are many, many more that I no longer remember.

I hope every sick or disabled person doesn't mind if I say on their behalf,

Thank you all.

**If I can't always remember names, I hope they will forgive me.

Another Warrior....

It's always so wonderful when I hear a famous person talk about crohn's disease.

http://blogs.menshealth.com/health-headlines/the-worst-pain-david-garrard-has-ever-felt/2010/12/12/comment-page-1#comment-972

David Garrard is so right when he says

" I believe that I’ve been blessed with this disease so I can be an inspiration for a lot of kids out there who are suffering. I was a kid once. I know that hearing something from a pro athlete means a lot."

I also thank him from the bottom of my heart for talking about the pain sufferers experience.

When a pro-footballer says

I was having awful pain in my stomach. It was honestly the worst pain I could imagine. I'd take a hit from anyone in the NFL over that again. I couldn't move for days. My wife had to do everything for me." 

tens of millions of Americans think "ouch".

Astounding and Sickening

The cuts disabled people are facing just grow and grow.

I've already outlined many on this site here http://diaryofabenefitscrounger.blogspot.com/2010/12/sickness-and-disability-cuts.html

and here

http://www.labourlist.org/some-cuts-dont-make-the-headlines

and here

http://diaryofabenefitscrounger.blogspot.com/2010/10/sickness-and-disability-review-of-csr.html

This cut, however, really takes some believing :

http://www.scope.org.uk/news/independent-living-fund-comment

Phasing out the Independent Living Fund just makes no sense at all. I fail to see how this could save any government any money as it only keeps disabled people out of state care to live at much lower cost in their own homes.

If we put together all of the cuts sick and disabled people face, we are literally stripping away all of the support we thought was only decent and right in a civilised society. The effect all of these attacks combined on "the most vulnerable in our society" can surely be nothing short of disastrous? Are we really prepared to live in a society that does almost nothing to support sick and disabled people?

I know there are many battles to fight at the moment, but if you have the strength and health to fight your own, I beg you to lend a little of it to your sick or disabled fellow human beings. They often have the weakest voice and the least ability to fight.

That we have a government who chooses this particular group to take the most pain makes me utterly ashamed.

I don't want to live in a world like this :

http://diaryofabenefitscrounger.blogspot.com/2010/10/shocking.html

Breaking News! Surgeon uses Telephone

In a bold - and some are saying unprecedented - move, Mr Genius, surgeon at Addenbrookes Hospital today phoned a patient himself.

Traditionally, senior medical staff have resisted methods of communication that involve direct contact with their patients, but for some time, our correspondent has been hearing shocking stories of these senior staff bypassing secretaries to use the telephone and even email to aid them in their work.

Always considered a radical, the controversial Mr Genius broke away from the medical status-quo this afternoon, ignoring warnings from colleagues that over-familiarity with patients would be the first step on a damaging path to equality.

This is not the first scandal to surround Mr Genius. Some years ago it was claimed he actually spoke to his patients as though they were equals, raising a storm of protest and outrage from consultants and surgeons worldwide.

A defiant Mr Genius told our correspondent "I am determined to keep pushing the boundaries of patient care. Technology has evolved and so must we. In the new year, I'm even planning to implement a totally new medical concept to improve outcomes. I call it listening."

To Assume Makes an Ass of U and Me

I've listed the catalogue of failure that even my discharged caused here :

http://diaryofabenefitscrounger.blogspot.com/2010/12/as-my-surgical-date-is-definitely.html

and here:

http://diaryofabenefitscrounger.blogspot.com/2010/12/scheming.html

-One of my drug prescribed as tablets instead of injections
-One prescribed in 25mg ampoules that no-one thought to tell me I should only draw up a quarter of.
-Only enough painkillers to last until 5am Sunday morning
-No pharmacy chart to help me keep track of what meds to take and when
-No pager number or ward number in case of emergencies
-Sending me home without checking if my copious bleeding had stopped (despite a new drug they'd started me on carrying the warning " For this reason you should tell your doctor immediately if you experience any of the following symptoms while taking this medicine: unexplained bruising or bleeding, "


You might also remember I'd been asking for a urine test for days,** but on discharge, I'd left a sample in the toilet. In the end I'd got the sample dish myself. When I was discharged, I'd had no idea if they'd actually even checked it.


This morning, I woke up with a raging fever. At first I didn't know what was wrong. I'd been cold and shivery all night, but just assumed it was the icy December frost, not me. This morning, my own sobs woke me up. I had cramps in my muscles and a splitting headache.


I did a wee and the smell actually made my little boy gag. The penny began to drop, and I asked Dave to call the ward to see if they had results for the sample I left. 


You can guess what they said can't you?


Yes, the sample had shown infection. 10 days ago.


No-one had thought to call.


No surgeon will operate on a patient with an infection. If I hadn't called today, but had arrived on the 21st for surgery, I would probably have missed my slot.


Are you all starting to get a picture of patient care here? This isn't a one off, it's perfectly normal. If they can make this many mistakes over a simple discharge, are you not all starting to get really quite frightened indeed?


The ward staff "assumed" I was just panicky. The doctors "assumed" I was just making a fuss over a heavy period. The consultant "assumed" I only didn't want to go home because it made me "panic."


I will keep on, plugging away with the same story I've been telling for nearly two decades, but surely, this time people will listen? Surely this time they'll stand beside me and tell the NHS - "Enough is Enough?"








**I asked for the test because I'd had foul smelling urine for days.

Clegg is not the only one in Trouble

I miss my little politic snarls.

I've been, through necessity, focussing on the day to day health side of things, but my passion is politics and the bit I always loved was the cut and thrust, the chess-game strategy.

I knew Clegg wanted a deal with Cameron. I knew months before the election. I also knew Cameron wanted a deal with Clegg. He knew he'd lost it. The minute opinion polls started showing his lead narrowing to 8 or 9 points, he knew it was unlikely he would win a majority. He needed little Nicky and he courted him like a lover.

Wasn't Nicky eager to be courted? How similar he and Dave were, how noble their aims. He saw them as lone rangers, both creating a Brave New World of Liberal-Conservatism. Both clear thinking pioneers who would show their less visionary parties the New Way. They wanted the same things - Nicky would throw off the shackles of his left wing, sandal-wearing Democrats and Dave would annihilate his crusty, right-wing dinosaurs.

And they pulled it off!! Neither could quite believe his luck when the Democrats agreed to prop up the Tories and the Right Wing Blues were so desperate to return to power, they sold their soul for an AV referendum.

But both shared the same fatal flaw. They believed their own hype.

When Nicky suddenly found himself ahead of Labour in the pre-election opinion polls, he really believed he could take over as the second party. He told us breathlessly how things could change, politics could change. He truly thought his party's time had come. Sadly, I think he believed there could be a better way. He was reckless. He glossed over what was vital and concentrated on what was possible. He became purist, declaring his was no party for "disillusioned Labour voters." He forgot that politics is not purist. He forgot that his party was formed by disillusioned Labour voters.

And Dave. He really believed that Labour had failed at everything. He believed Blair had been successful only because he said one thing, then did another. He thought his party were fully signed up to his centrist, hug-a-hoodie agenda and that any dissenters would die off gracefully.

But he didn't do the legwork. He didn't drag his party, kicking and screaming to the centre as Blair had. He fundamentally misunderstood Blair's success, then thought he could replicate it. The biggest mistake of all was forgetting that he didn't win. When Blair swept to power with a vast 179 seat majority, he had captured the zeitgeist. He could support any policy because the people trusted him. If he said one thing, then did another, it took a very long time indeed for people to wonder if it was a good thing after all, if actually, they were being shafted.

Why didn't Dave win? Why, with the most unpopular opponent for decades, the worst financial situation for a century and a tired, 13 year old governing party, couldn't he romp home?

It was that niggling fear, that whisper in every heart, that unresolved flaw. Nasty Party.

By 1997, the public realised the Tories had failed.

By 2010, the public realised that Labour were tired. The two are very different.

There were undoubtedly things the public had despised about Labour and there were things they believed Labour got wrong. Iraq, Immigration, 10p tax, supporting the feckless, spending too much. But they knew hospitals had improved and unemployment had stayed low. They knew there were more nurses and police officers and teachers. They knew about the minimum wage and Sure Start and free nursery education. They just hadn't seen much of that action for a while. They didn't believe Gordon had the vision to get the action back.

We've all watched the slow destruction of the LibDems. We've watched in astonishment as Vince called for instant cuts, Hughes voted for welfare reform and nearly ALL voted for raising tuition fees. We've watched their share of the vote fall from the twenties to the teens, to 11 then 10 then below 10. They've held centre stage so well, we all forgot the side show.

Cameron has been in water as hot as Cleggs, but Conservative MPs know how to play the game. They know when to roar and when to stay silent. They know about numbers games and they know about coups. Oh, if any party knows about coups it's the Tories. No other party wields the knife so brutally.

They swallowed the bitter pill of offering electoral reform. They gritted their teeth when Cameron tried to neuter the powerful, backbench 1922 committee. They ignored the ring fencing of International Aid and they even held their nerve as the Tory Holy Grail of Defence was slashed.

But there was a charismatic rebel in David Davies. An astute, experienced old-timer who knew what his party wanted in a way Cameron never would. He rumbled a bit, but he played his cards close to his chest. He whispered and soothed and undermined. He set out a defensive game, but all the while his rooks and his bishops and his knights were creeping close to checkmate. He knew he would have to wait for the killer move and wait he did.

Tuition Fees was a gift to David D (not Dave, far too woolly for real Conservatives.) I'm sure he lobbied and agitated, counting every Lib Dem rebel and providing a Tory to match them. If he had thought the Libs would vote against, he would have made sure enough Tories did too and the government would have fallen. Checkmate to the right wingers and bye bye Dave and Nicky. They didn't and the bill passed, but David (or perhaps some other Tory rebel) had a quiet (and no doubt utterly gentlemanly) word in Dave's ear. "If the Libs do that again, we'll vote against you and it will all be over." No more anti-Tory policy, no more liberal claptrap, we have you by the balls Dave and now you do what we want.

Quietly and with the patience of the chess-master, David has manoeuvred himself into the role of puppet master.

I'll hazard a little guess now. I like a prediction. When the coalition formed, the elephant in the room was Europe. The Libs are pro, even the orange bookers like Clegg and Alexander. The Tories are against and will never be anything else. Just wait for the next controversial ceding of powers to Europe or excessive budgetary demand. Dave will have to design a policy that suits his Liberal fig-leaves, but David will know his moment has come.

You just couldn't make it up (2)

I just had a call from my surgeon's secretary.

We hadn't heard anything about my surgical slot for 22nd, so Dave chased them this morning.

The secretary told me Mr Genius (surgeon) wanted to see me on Wednesday for a pre-op appointment!!!!!!!!!!

I've been sent home, 130 miles away, to live on a diet of opiates, fortisips and a cocktail of other drugs for three long weeks. I didn't want to come home, I tried all I could, but here I am. I need an injection every 2 hours or so and I have just spent the last 36 hours vomiting every 20 minutes.**

Like J-Lo at the Ivy, I asked her "Does he know who I am?" I explained that he's operated on me 6 TIMES before and that I saw him just a few days ago as an in-patient. Surely he doesn't need me to sit in a car for 6 hours vomiting in order to sit in front of him for a maximum of 5 minutes, repeating everything he already knows???? Do they actually want to kill me off? (Actually, by now, that might be exactly what they want, lol

Despite my astonishment, I managed to joke with her a little and she's agreed to check that he really does need to see me. Of course, this all adds to my reputation as being "difficult."

If she gets back to me and says, yes, he does insist on seeing you, I will have no choice but to smile sweetly and half kill myself getting to the appointment. Dave will have to take another day off work (£75) and it will cost us £50 or so in petrol. (I told her all this.) Nothing but nothing matters more than having that op on the 22nd.

Oh, the myriad ways they can make this harder than it already is!!

**You'll probably be pleased to know that that's passed today by the way, so panic over!

Not enough hours in the day.

Some of you might have noticed articles appearing and disappearing over the last few days.

I've been practising adding links to my text - not always successfully.

Of course it might be me who has been appearing and disappearing over the last few days. (As previously discussed here http://diaryofabenefitscrounger.blogspot.com/2010/12/as-my-surgical-date-is-definitely.html)

Anyway, no matter. Where was I?

Oh yes, Guardian again today, two days later than intended :( Bloody Crohn's.**
http://www.guardian.co.uk/commentisfree/2010/dec/09/nhs-hospital-wards-care-system?showallcomments=true#end-of-comments

I'll just have to hope Patient Tuesday did some good somewhere all of its own.

Hopefully back to myself soon, it's boring in here.

**Just realised this is a private joke in the Marsh house, where "Bloody Crohn's" gets blamed for losing the car keys, cancelled flights or any other rubbish event. We like finding convoluted ways to blame everything on the Bloody Crohn's.

Sickness and Disability cuts

This is really quite extraordinary.

If you add together all the cuts sick and disabled people are now facing, both directly and indirectly, it's nothing short of shameful.  The article below puts all of those cuts together in the best attempt I've seen so far.

The DWP have confirmed that disability living allowance (DLA) is to be abolished and replaced by a new benefit called Personal Independence Payment (PIP) in 2013/14. All existing DLA claimants will be reassessed for PIP once it is introduced.

A brief consultation has begun – but not to decide whether to replace DLA, only to decide the finer details.

From the scant information available, we look at what’s staying the same, what’s changing, why your ESA medical may also be your PIP medical and who is most likely to lose out with the introduction of PIP – designed to reduce spending on DLA by at least one fifth.

Whether you have a PIP or an ESA medical, you can be sure that it will be Atos who carry it out.  The coalition have nowextended the Atos contract by a further three years, giving the multinational a virtually unbreakable stranglehold on benefits medicals.

And that may not be the end of your dealings with Atos.  They are one of the companies shortlisted by the DWP to run compulsory schemes to get sick and disabled claimants back into work once they have been placed in the work-related activity group.

The voluntary sector did spectacularly badly in the same bidding war, with Shaw Trust being shortlisted in just one of the eleven regions.  A consortium of nine charities, including Mind and Mencap, however, are desperately trying to become subcontractors to the big boys like A4E, Atos and security firm G4S.  The charities are flaunting their combined £688 million turnover and cash surplus of £16 million in the hope of turning private sector heads and getting a few scraps of the billions being invested in getting claimants into work.

Not, we’re sure, that the charities see it that way or will thank us for publicising their consortium.  Citizens Advice certainly weren’t happy with our unenthusiastic write-up of their ESA campaign – so much so that they asked for a right to reply, which we were happy to give them.  Pop into the blog and see if you agree with what they say.

In other news, we have definite confirmation that the time limiting of contribution based ESA will be retrospective when it is introduced in 2012.

There’s nothing definite about the date when PCA exempt claimants will be transferred to ESA, however.  A Benefits and Work member has used the Freedom of Information Act to uncover the fudge that the DWP are employing to deal with the issue of claimants with no renewal date.

Not that any other dates relating to the migration of IB claimants to ESA can be trusted, it seems.  It has now emerged that there will be a delay of  months after the first medicals before any IB claimant actually gets a decision about their ESA entitlement – or lack of it – due to DWP software not being ready in time.

Also delayed - for existing claimants at any rate - are the cuts to local housing allowance which were due to be introduced in April and October but which will now go ahead in January 2012.

On which final crumb of comfort we turn to the forums for reassurance that, for the moment, some people are still successfully claiming the benefits to which they are entitled.

It takes quite a while to read if you include all of the links, but I promise you, It's worth it.

Are we really going to let this happen?

Speak out now, while it's still not too late.

Disclaimer

It just occurred to me that an apology might be in order.

At the moment I'm on so many different drugs to keep me going until the 22nd, that I can barely remember my own name.

Typing through this opiate-anti-emetic-blood-thinning haze is like trying to speak to you all through cotton wool or treacle.

Sentences can take hours to write. I can't think of words and I constantly forget what I'm writing in the middle of a sentence.

Anyway, I just wanted........

Oh never mind.

Scheming...

I've come up with the best plan to show that what I'm saying about patient care is true.

The trouble is, I can't tell you readers without giving the game away.

All I can say is that I've thought of a brilliant way to separate the emotions of patient care from the facts.

You all feel so much like real-life friends, (some of you are more "real-life" than friends who live just down the road, lol) that all I want to do is sit down with you all and gossip over a cuppa.

Sadly, you'll just have to wait like everyone else. If I go quiet for a while, don't fret, I'll just be working on my scheme. Mwahahahaha.

If at any time I get too ill to post, Dave will give updates, so you don't need to worry about me!

***********************

As a general update, I'm back home with my wonderful family. It feels incredible. Every bed seems softer, every colour brighter, every baby kiss a privilege. 

Even on discharge it was a shambles. The consultant told me I'd get the registrar's pager number and the direct ward number. I got neither. The pharmacist offered some kind of chart to help me keep track of the copious medications I have to take. I didn't get that either.

When my drugs came up from pharmacy to take home, they had dispensed anti-sickness tablets instead of injections and perhaps most worryingly of all, a drug I'm supposed to take 6.25 mg of was dispensed in 25mg ampoules. When I phoned the ward to query it, the nurse told me they only draw up 6.25 mg of the 25mg and throw the rest away. I'd had no idea about that and only realised before I had the injection because the volume seemed much greater than before.

Even if we ignore the ridiculous waste of throwing three quarters of a particular drug away every time you use it, we can't ignore how dangerous it could have been. I've never had to draw up anything in an ampoule that I've then had to go on and either discard or save. I would image very few patients would have ever even noticed the mistake. And well, well, well, look what I found when I looked it up on t'internet to check I couldn't have overdosed! http://www.netdoctor.co.uk/medicines/100001886.html I particularly like this bit, don't you?

" For this reason you should tell your doctor immediately if you experience any of the following symptoms while taking this medicine: unexplained bruising or bleeding, 

They had prescribed it for me to treat nausea but no-one even mentioned that you should only draw up a quarter of the ampoule. It could have been a dangerous mistake. She didn't even apologise.

They only dispensed enough of my painkillers to last until 5am on Monday morning, meaning the first thing I had to arrange when I woke up was getting a new prescription and sending someone out to collect them for me.

If they can make this many mistakes over a simple discharge, I dread to think of the implications.

Has anyone seen Sue?

As my surgical date is definitely scheduled for 22nd December, the medical team are keen to send me home to wait. I am not keen.

My family are already stretched to breaking point. To give you some idea, this is a typical day for my Mum.

-Get my 6 year old ready for school
-Come back to my house, get my 2 year old dressed and fed ready to drive him the 15 miles back to her house and my disabled dad.
-She gets my Dad up, washes and dresses him, then gets him and my baby back in the car and drives the 15 miles back to my house again.
-Back at my house, she tidies up and does some housework before picking Giac up from school.
-She helps with his homework, gets a meal ready for when my husband gets in from work and they all eat together.
-Finally, she drives my Dad home, gets him ready for bed and then drives the 15 miles back to my house again to stay the night so that she'll be there to start the whole exhausting process all over again.

How can she possibly add in looking after me too? Bringing me drinks and meals upstairs, making sure I've got all my prescriptions and coordinating with doctors?

My husband simply has to work or we won't be able to pay the rent. He comes straight in from work, eats some dinner then baths the boys, reads them stories and gets them settled down in bed. His day usually starts at about 6.30am and doesn't finish til about 9pm.

Despite all of this, there doesn't appear to be anything my local authority can do to help. I'm not over 65 and I'm married, so I don't qualify for anything.

My GP won't help. The surgery say they can't do home visits or even ask the practise nurse to keep an eye on me. I've tried everything not to be sent home, but nonetheless, they're discharging me today.

**********************

Yesterday, the relationship between me and the nursing staff broke down completely. It's probably the most distressing thing that a patient can experience and it makes it even harder for me to stay.

I no longer have any idea if I really am difficult, aggressive and rude, so I'll just write about yesterday as impartially as I can and let you decide. 

The night before last, I was given the wrong steroids. The ones they gave me were enteric coated - a special coating that is digested more slowly, ensuring the steroids are only absorbed when they reach the bowel and are therefore more effective. Unfortunately, in bowel disease, they often just don't get absorbed at all and have no effect. Our bowels are just too inefficient. 

No harm, I mentioned it to the sister at the 9am drug round and asked if they could get me some normal ones. 

I feel rubbish if I don't take them - tingly, weak and incredibly tired. I waited in bed until they could get me the others.

At about 11am, I went to go to the toilet and found I was sitting in a pool of blood. My period seemed to have started with a vengeance, soaking through my pyjamas and sheet. I got up to go to the toilet, but blood started pouring out of me, covering the toilet floor, even flicking all over the wall and sink as I tried to clean myself up. I told a nurse and she came and changed my bed. 

Shortly after lunch, a staff nurse came to ask what exactly it was I needed in the way of home care. I started to explain how stretched my Mum was and how I didn't think she could bring me cups of tea and meals on top of anything else. The nurse's face looked incredulous, "Why on earth does she need to bring you cups of tea? You're perfectly mobile?" She was red in the face and obviously disgusted. I was thrown, wondering if she thought I was being discharged because I was better, rather than just to wait for my surgical date. She'd seemed nice though, so I explained as clearly as I could how unwell I still was and the reasons why we needed a little help. 

When I'd finished, I could see she was still furious, so I asked if I'd explained things well. Her answer seemed odd. "I've certainly heard what you have to say" and she walked away.

I was upset, confused, not sure why she was so hostile, so I asked a friendly Health Care Assistant for a shoulder to cry on. I started to tell her what had happened, but she walked away half way through and never came back, leaving me crying in my curtained off cubicle. 

At about 1.30pm, I got up to do something and blood started to pour out of me again. I was literally clutching wadges of paper towels to myself and discarding them, soaked through after just a few moments. I still hadn't had my steroids, so the combination was making me feel very unwell. I called another HCA who had changed my bed and showed her the tissues. She said she'd tell the nurse. 

At 3.30, I still hadn't had my steroids and no-one had been to see me about the bleeding. I suppose I'd had 4 or 5 episodes of the blood simply gushing out of me every time I tried to get out of bed and I could only lie flat to make it stop. I asked the HCA if anyone was going to come and see me about it, but she told me the staff nurse "didn't think it was anything important."

At that point, I lost my temper. I called my Mother-in-Law at home and spluttered out the whole sorry tale. I suppose everyone else could hear me but I just wanted to go home. She'd been a nurse for over 20 years, and simply couldn't believe what I was telling her. I ranted on for a few minutes, gulping with tears and frustration. As I put the phone down, the sister from the morning drug round walked past my bed. I asked her if she'd managed to get my normal steroids, but she started to tell me off. She said I'd already had them and the doctor wouldn't prescribe any more. She said I was rude and demanding and asked why I was telling everyone I was getting bad care. I didn't have a clue what she meant, but she was shouting at me, telling me I didn't need any more steroids and that I was lying about the care. "Why are you telling everyone you're getting bad care, you're not, we're caring for you very well."

At that point, I lost my temper too. I told her it was 4pm and I'd been waiting for my steroids since 9 that morning. I'd been pouring blood for 5 hours, but they'd refused to come and see me about it, and I'd been waiting for a urine test for three days. "What about that do think is good care?" I asked her. She walked away and that was that. From then on, no-one would answer my buzzer at all. The staff nurse ignored me every time she walked past my bed. I bled again a couple of hours later, but the nurse again, refused to come. 

Soon after, one my medical doctors came and asked me what was wrong. Her whole demeanour had changed. She told me I got upset too often, (PTSD apparently forgotten) that the nurses had said I was demanding and that I insisted they always did things immediately, that I was rude and always complaining about bad care. She said I should have mentioned the steroids at the doctors round that morning, but I hadn't known that. She said I wasn't sick enough to get help at home and that everyone had done as much as they could for me. 

A little later, the sister and staff nurse were back in my bay, doing some kind of IV procedure on a patient. I glanced up from my computer, trying to think of a word. "We're being watched sister", sneered the staff nurse looking at me. The sister muttered something and they both laughed. 

I asked calmly if the staff nurse was talking about me. She just stared back at me, red in the face. "Can we not do this?" I replied "Can we not decide I'm just a horrible person and make everything I do wrong? Only it feels a bit like schoolgirl bullying now." No-one said any more.

So that's how I stayed. I never did get my steroids, and no-one checked the bleeding. I was weak and shaky and faint, forced to lie flat until the shift changed at 7.30pm. 

Today, I'll go home. Pouring blood, with a partially obstructed bowel, Dave will have to drive me home from Cambridge and somehow, we will all have to manage until the 22nd. I've no idea what caused the sudden, frosty attitude. No-one would tell me who'd said what or why they were so upset. I'd had a perfectly normal morning, laughing and joking with staff, I hadn't demanded anything that I recall, my injections had been on time and I couldn't think of anything I'd said that could possibly have been offensive. 

My only guess is that someone had read my blog and hadn't liked what they'd seen, or that someone had been making up stories to cover their own cock-ups. I don't suppose I'll ever know now, but once you're considered "difficult" there's no going back. I couldn't stay now, even if I wanted to, as everything I ask for will be "demanding" and every symptom "attention seeking."

I have absolutely no idea who I am today. Am I Sue, brave, kind and clever? Or am I Susan, rude, aggressive and demanding? I truly cannot answer. I have lost myself, I am unsure and embarrassed. Have I caused all these problems? Have I over-reacted to minor slips? Or has the care been sloppy, has the system failed? I am so isolated, so far from home, so removed from those that know me, so disorientated, I can no longer judge.

The doctors all love me again this morning. I am smiling, agreeing with everything, cooperating about going home, saying we'll manage - all to get out and away from this nightmare. Apparently, if I "panic" I can call any time. 

That's OK then.

Update : A new drug that the hospital had put me on just two or three days before carries the warning

"For this reason you should tell your doctor immediately if you experience any of the following symptoms while taking this medicine: unexplained bruising or bleeding........"


But that's OK too, the staff nurse looking after me didn't think the bleeding was important enough to come and talk to me about.


Just out of interest, here's what they prescribed me as an anti-emetic:


 http://www.netdoctor.co.uk/medicines/100001886.html

Coincidentally good at treating "anxiety" too isn't it?


Seems I'm either dying or psychotic. I wonder which it is?

Patient Tuesday

Yesterday, the news was dominated by the Patient's Association story of inadequate care in NHS hospitals.

This is my life's work, my reason for fighting.

All my life I've wanted to expose the realities of patient care in hospitals and reform it radically. It is the last taboo, our most shameful failure.

Hoping to follow up on the PA report and keep this story in the news, the Guardian have agreed to run a piece by me on this issue on Tuesday.

To make sure we get the maximum possible coverage, I wanted to ask all the spoonies, bloggers, campaigners and friends out there, who know what I know - that patient care is often degrading, inadequate and even dangerous - to make it their subject for Tuesday.

There are lots and lots of ways you can help. 


-Tell a story of the most damaging NHS failure you have experienced. 
-Share some shocking statistics that would make people think. 
-Nurses or doctors who know very well how the system fails could speak out. 
-If you are an MP or work for one, perhaps you can make a statement of support on Tuesday. 
-Maybe you have a contact in television and you can persuade them to speak to one of us on their show.

It's very difficult to get a campaign like this organised in just 4 days, so I can only ask that if you all like the idea, you can help me to persuade everyone who can, to join in and make a noise. Facebook, Twitter, email, let's try to get the message everywhere, all day on Tuesday.
If you don't know how you can help, but still want to do something, you can help on Tuesday by posting links all over the web, ensuring that our stories get read.

We blame no-one. NHS staff often do miraculous work under impossible pressure. It is the system that fails patients and we CAN make it better if we speak out. Please keep your pieces as non-judgemental as you can. We don't need to attach blame. If we simply tell our stories and make our suggestions, readers can decide if they want their Mum or friend or child to go through similar experiences.


I've had so many incredible messages since I set up this site, thanking me for saying what you've been feeling for years. Often the writer has felt helpless, powerless to make a difference. On Tuesday you can make a difference. You can post and link and mail and write all day long and you can do some real good.
Thank you so much in advance.

This isn't just important, it could save thousands of lives.

Hallelujah!

A new study has shown that elderly hospital patients aren't getting the level of care they should in hospitals. Following this report in November :

http://www.guardian.co.uk/society/2010/nov/11/nhs-hospital-care-elderly

The Patient's Association have today confirmed that elderly patients "lack basic care" in hospital

http://www.bbc.co.uk/news/health-11889342

One daughter watched her mother go into hospital with a fractured hip only to go home a week later ready to die from the dehydrated and malnutrition she suffered in hospital. Liz Prior says:

"I don't think anyone did anything on purpose, but it's a systemic, viral attitude."


I set up this very blog because of that one sentence. What's more, it's not just elderly patients, it's all patients. All I've written about for the last three weeks is the inadequate care patients receive in hospital. It is indeed systemic and patient's suffer on a daily basis because of it.


That's the horrible truth. Yesterday, the nurse taking care of us was so poor almost nothing got done. Drugs weren't administered, IVs stood empty and unchanged, liquid feeds didn't go up etc etc etc. I know it's unpleasant reading for the good nurses and hospital staff out there, but the system fails daily and suffering isn't just a word. Even if the life threatening things never went wrong, from a patient's point of view, soiling the bed because no-one will bring a commode, waiting hours in pain for painkillers or not getting a drink for hours are horrible, shaming, degrading things.


The Patient's Association claim


 "It's a scandal, and it's outrageous that it has been persisting for years."


Yes. It is a scandal and it has been happening for years. 


I have been telling the same story for 16 years. I've written to national newspapers, I've lobbied at Conference, I've written to MPs, I've complained to patient advisory services, I've blogged and I've begged and no-one has ever dared to believe I could be right.


I have notebooks at home detailing every year of the last 16 years and every diary is the same catalogue of astounding incompetence, frightening mistakes and cruel neglect. I'm sorry, but it happens every time, mistakes are made every day.


I'm delighted that at last, groups seem to be speaking out on the issue and blogs like mine are all over the web telling the same story.


I've said to every health professional I've seen over two decades, "Give me a month at your hospital/surgery/clinic and I will improve efficiency and patient care beyond all recognition." I don't recall a politician even answering my letters.


Complaints are simply never acknowledged. I've only ever made official complaints 3 times for the very worst failures. Once, because they poisoned me, once because I had a stroke on a surgical ward and the staff didn't recognise the symptoms and insisted I was just having a panic attack for an hour and a half and finally, because a consultant failed so spectacularly to communicate that I ended up having a massive seizure after an infection was left raging out of control for 5 months.

Each time, I've had letters saying either no-one could "remember", I was wrong to think anything dangerous had happened, or notes and letters have mysteriously altered or disappeared. I have all three letters, I think I'll post them soon.

We may finally have a chance to really confront the failures of patient care without covering things up and ducking the hard truths we need to face. We will all be a patient at some point. We will all need to hand over our lives to doctors and nurses at some point. It's vital that every single one of us tells our stories and makes sure that this changes. 

Patient care is shameful in the UK. At least, today, I'm not the only, lonely voice shouting a warning.

Arse.

Arse, arse, arse.

Mr Genius, the surgeon came to see me this morning.

I was fast asleep, with my head under a pillow, so had to snap into Font of Charm and Knowledge mode - something I don't usually manage until I've had at least one cup of tea.

Mr Genius is my hero. He's got the blackest sense of humour I've ever known. He calls me "Bread and Butter" because IBD patients like me keep him in Tuscan holidays. He's twinkly and irreverent and he knows me well by now. More importantly though, he's the most brilliant surgeon.

I don't get lots of inflammation like lots of Crohn's sufferers, rather I get "strictures". They are fibrous narrowings in the bowel that build up over time until they block the bowel completely. The only treatment is to remove them surgically, but Mr Miller is one of the only surgeons in the country to perform surgical stricturoplasty. He slices along the thickened area and peels it back to reveal healthy bowel. Mr Miller has opened no fewer than 27 of these strictures for me. Using this technique, he doesn't have to take the area away completely (resect it) and I can hold on to most of my bowel. Under another surgeon, I would probably be dead and I certainly would not be able to tolerate food orally and would be sustained instead with a permanent, central line, liquid feed, TPN. (Total Parenteral Nutrition.)

He told me I'd need an operation (I could have told him that 3 weeks ago, but they do like to be in charge.) His next list is the 22nd December.

I am the surgery Queen. I always get discharged 5 days after surgery, the very earliest day allowed, but even I can't get home on day 3.

So what do I do? I only came in when I did because Xmas was coming. I calculated that even with an unprecedented level of cock-up, I would be on the mend and back home before Xmas. Silly me. The first rule of NHS is never assume they can't cock-up more.

The medics are talking about sending me home again while I wait, but my family are dead set against the idea. They are already stretched to breaking point and don't want a repeat of last time. My Mum has an 88 year old disabled husband and is already looking after my two children all day, then rushing home to feed my Dad and get him settled for bed. She can't run up and down stairs all day, bringing me cups of tea and medicines and food as well.

We mused over possibly getting me some community support - perhaps a district nurse or social service support. Most importantly, my GP simply has to do more. At the moment he's kind but ineffectual. He does everything I ask but takes no responsibility at all for my care. If I'm going to be this unwell at home, he will have to take a more active role in managing my medications and backing up the team here.

The only other thought I had was to lie to my 6 year old about the date. We could get him a new advent calendar now and say Mummy and Daddy made a mistake about when to start it. Could we really manage to do Xmas on the 29th without him realising? Surely the telly would give it away even if some well-meaning friend or relative didn't?

Oh well, no point worrying about it now, they might think of something clever long before then.

UPDATE

Yep, surgery definitely booked for 22nd December. I literally have the worst luck in the world don't I? That will be 44 days since I was first admitted. 6 weeks and 2 days. The entire process has never taken more than 5 weeks and despite leaving a week's leeway on top of that, I'm still going to be in hospital on Christmas day.

Now it's confirmed, of course, all I'm thinking about is the boys. How on earth do I manage not to ruin Christmas day for them entirely? I'll be barely able to walk, stuck in bed, with tubes everywhere - up my nose, In my vein and up my BLANK. (Fill in your own word for where the catheter will be "up")

The only brainwaves I've had so far are either :

1) Fib about which day is Christmas day. As I've already mentioned, I could get him a new advent calender and say Mummy and Daddy got the start day wrong and pretend Christmas is actually on the 29th

2) Do Christmas early. As I'll be at home til the 21st anyway, we could explain that Santa made a special call and said Giacomo was so special that he would bring his presents early.

3) We all have a whip round and send me private.

As 1 is probably too risky, and 3 is a joke, I suppose we'll have to go for the second option.

Any other suggestions gratefully received.

Target Practice

To amuse myself and pass the time, I am holding an impromptu training session in giving intra-muscular injections.

I have three students, and I'm training them from a patient's point of view rather than the medical training they will otherwise get.

They're all flushed and anxious.

There are lots of little techniques to make the injections less painful and to ensure the patient gets the drug administered effectively.

I'm laying here, with my buttocks facing the ceiling as they practise getting the needle in confidently, looking for scarred areas, getting rid of air bubbles and checking for arteries.

I'm sure they all think I'm bonkers, but if it means that as they go through their career they always give injections that don't hurt, I'll be happy.

Let them Eat Cake

http://www.mirror.co.uk/news/top-stories/2010/12/01/brum-s-staff-all-at-risk-115875-22753503/

Times are tough in Birmingham. It's Conservative run council appear to be setting about the business of cutting back the state with particular glee.

Every one of their  26,000 council staff are told they must accept new contracts or they will face compulsory redundancy. The axe has been sharpened, now, they must simply wait to see where it falls. All they know is, there will be a "significant reduction of the workforce."

It's OK though - the Conservative council leader Mike Whitby at least offered some comfort to his colleagues. He told them they still had reason for optimism : "We have more Michelin-star chefs than any city outside London."


That's OK then.


#realitycheck    #sympathybypass  #Toryfail