Monday 28 April 2014

The Opiate Naughty Step

Today, the 28th April, 2014, with little fanfare and not even one triumphal march through the streets of Worthing, I was quietly removed from the opiate naughty step.

After 31 years, 8 GPs and a host of farcical tales so infinite, I could never recount them, I now have a repeat prescription for the tiny amount of opiates that don't even nearly get me through a week.

A nice lady phoned me from the surgery a few weeks ago and explained that my "usage was stable" (?!!?) my needs regular and unchanging (oh if only!!) and (this is a subscript, she didn't actually say these words but if you imagine they weren't implied you've never been on the naughty step) "I haven't murdered anyone at knifepoint for an extra dose or three"

This meant, that just like everyone else, my prescriptions could now be issue automatically and repeatedly without the usual accompanying junkie-hop.

From now on, they would be sitting there waiting for me, accessible and benevolently provided. This is almost too much newness for me to deal with in one big step.

For the last 30 years, I have had to

A) Writhe miserably for a minimum of 72 hours.
B) Call for an appointment that morning or put a request through to speak to the duty doctor. ("The duty doctor is often very busy you know, he's there for emergencies, blah blah")
C) Then, I'd have to explain all over again, every time, to even the most well meaning that, yes, I do still have very severe crohn's, no there haven't been any miracle cures, and no, the missing two-thirds of my bowel haven't grown back.
D) Collect 4 x weekly prescriptions to take to the pharmacy that could be kept there for each Monday morning.
E) Collect said prescriptions weekly, first thing on a Monday morning in-between trying to get two sleepy and often uncooperative pre-teen boys ready for and delivered to school.

For most of those 3 decades, this has been the bane of my life. Way worse than the actual symptoms themselves.

What if your own doctor is away?
What if you get the slightly senile senior partner they can't quite bring themselves to sack?
What if they get the dose wrong or the name or my address? (Which I estimate they did at least 90% of the time, meaning three or four trips where one would clearly never do.)
What if something pops or twists or turns inconveniently septic slap bang in the middle of a bank holiday weekend and you have to explain to those most dreaded of wraiths, the On. Call. Locum?????
What if the pharmacy forgot to order more in or for some reason, Atilla the Hun has been bought in as cover pharmacist and just doesn't like the look of you?

The what-ifs make this the roller-coaster of long term pain conditions something only a fully fledged sickie could ever really know.

With trepidation, Dave set off for the surgery this morning and miracle of miracles, the prescriptions were indeed sitting there waiting to be collected. He took it to the pharmacy and yet more miracley miracleness meant that they had re-ordered the stocks. It was diagnosed right and the dose was even right.

I think I ought to have got some kind of certificate I can pull out at all of those times above when delirious agony has been preferable to running the dreadful pain gauntlet assault course.

"This is to Certify That

Sue Marsh

Has successfully completed 3 decades of judgmental & obstructive pain management.
We award the medal of repeat prescription with no pre-appointment and hereby recommend that all health related establishments at least give her the benefit of the doubt

Gold Level. 

Wednesday 9 April 2014


Dark nights, alone, frightened.

No-one to come when you call. Bloody sheets, retching as just-cut muscles scream in discordant hell.

No one comes.

You exist not to move. Not to blink, not to breathe. They all rip through you in waves. Tubes tie you there in tangled vitality.

Survival. A real person in the room with you. Watching. The only person in the world. All there is to focus on. We're so surprised to meet. Learning about each other is a revelation.

It is all about hanging on. Somehow, minute by minute, hour by hour.

Always quiet, not dark but dim.

At last they come. Survival leans forward in his chair - will you make him leave?

You Force your eyes to focus first, through sheer force of will. (I must speak, I must explain.)

You test a sound, but Survival is smiling, nodding quietly in his chair.

"I need you."

(Tries again, not enough)

"I need you to stop this drug."

(Pauses. You feel yourself falling, far away, into yourself, but there's only one thing. One important thing you have to do. You know you can. If you could only remember how.)


Then nothing. No survival, no opinion, no determination. Just nothing.

When you wake, survival has gone and a kind face says they saved you. You smile, falling gratefully back.

But the smile is because they're wrong. You saved you.

That's how we do it. That's what made me able to do it. That's why I can do this but not live the way others do. 

Because being dangerously, critically ill means that you will always, always find a way to get past Survival. 

Until you don't. As, one day, we all won't.


Firstly, soooooo sorry we had a Facebook hitch. Just too many health related balls in the air

We now have a Facebook page where you can share links you see joining the #BeyondBarriers debates, talk about ESA and Work Programme reform, and let people know what YOU think. Make your voice heard. Can you all be part of the team for a while and link to the site, ask for likes and share it around? Thank you

There are links all around the web discussing the Beyond the Barriers report and giving their first impressions. We're overwhelmed by the positivity and support from think-tanks to blogs, from Conservative MPs to Labour peers. From campaigners, still tweeting for all they are worth, hoping the public will hear and join them to charities.

Here are some new ones :

Catherine Hale, author of the Work Programme section of the report discusses it at Left Foot Forward

I start a debate at Progress

Richard Excell at Touchstone Blog welcomes the report :

False Economy share our press release

Claudia Wood at Demos writes an enormously thorough and supportive article

Luke Akehurst at Labour List shares his own experiences of disability and makes Beyond the Barriers come alive

I'm sure I've missed very very many, so if you could PLEASE list them in the comments thread the team would be so grateful.



Here are the first few links to share, read and generally support the Spartacus Way!!!!!

Centre for Welfare Reform

Beyond the Barriers blogspot

Parliament TV - Watch live evidence on failure of ESA HERE!!!

Guardian Sue - Listen to Disabled People


Spartacus Network


Good morning.

The Spartacus team have been working for three years on research into ESA, WCAs, the Work Programme and employment for sick and disabled people.

Today, we launch Beyond the Barriers, the most comprehensive report to date on how the system currently fails, but more importantly what we need to do to improve it.

You can read the report 

You can read the press release

Beyond the Barriers aims to start an enormous conversation about what should replace ESA. People will be taking part in it across the political spectrum, all around the internet.

As we launch, experts from the disability community will be giving evidence on the failures of ESA to the Work and Pensions Committee live on Parliament TV You can watch and share the link 

If you want to get involved, we've provided the following tools to help :


Starting from now you can follow the new Beyond the Barriers @spartacusreport on Twitter. The account will have news, updates and links throughout the day, so do keep an eye on it as a central info source

The hashtag is #BeyondBarriers 

Tweets start NOW!!!!

The next slot will be 12 noon, then 2pm, then 4 pm (Thats 1200 hrs, 1400hrs and 1600 hrs for those with a military strategy!)

Here are some tweets you might like to use : 

BREAKING: from #Spartacus : groundbreaking report into disability
benefit flaws - and how to fix them. #BeyondBarriers

BREAKING: Major new report by #Spartacus "important contribution" to
disability debate (Anne Begg) #BeyondBarriers

#Spartacus team shows a way 'beyond the
barriers' of current disability support #BeyondBarriers

"If you read one policy or political document this week it ought to be
#BeyondBarriers" @LabourList

Major new report by disabled ppl shows policymakers how to
fix failing disability benefit system #BeyondBarriers

WATCH! Parliament confirm #BeyondBarriers report findings LIVE!!

We hope to have staged links available, which will link to the case histories you wrote for us on the Beyond the Barriers blog at,  explaining how benefits or support have helped you to cope, and even to move on. Please visit the blog and add comments

Facebook Follow the WeAre Spartacus page for updates and links

Local Media

We have a template letter out that you can send to your local paper, or to a National if you wish. You can view, copy and paste the template from 


Contact your MP

We have a template that you can send to your MP - it can be found 

Please  feel free to amend it or write your own :-) Personal letters are better but any letter is better than none ;)

You can find your MP here; or here;
Internet Blogs

There will be articles and blogs all over the internet - we will try and tweet and Facebook the locations for you as soon as we are aware of them.

We also have our own blog site just for this report. On that site you can see the whole report and supporting work.
You can find it here; 

Saturday 5 April 2014

New Spartacus Website!!

We're all really excited to announce the launch of the new Spartacus website!

You can still find all of our past work there with a few new additions

Stef Benstead has taken over the running of the site. 2 years of campaigning is like 412 effort years so huge thanks to Jane Young, the previous site director who produced and guided so much important work. 

The old address, is now defunct but bear with us while we set up a redirect to the new address.

Stef is one of our lead researchers on ESA and has produced some seminal work already such as ESASOS, a report into how successfully Harington recommendations had been implemented and the Spartacus submission on ESA to the Work and Pensions Committee. 

Next week, Spartacus is on the march, so please watch twitter and Facebook extra carefully and if you want to be involved, email me at before Wednesday

It will be a great chance to launch the re-designed, updated site and I would appreciate it so much if you could help me to let people know about the new address.