Pester a Peer 2012

The letter is below. Feel free to use it as is, or to personalise it (for example switching 'we' to 'I' if that's more your style, or adding your own experiences). Please comment below and tell me how many peers you would be up for emailling (even one is one closer to all of them) - I can then suggest some to you and try and keep track to make sure that we cover everyone. Or, pick a random letter of the alphabet here and work through it. You can find out how people voted here.

Thanks,
Flo =]


Dear x,

We were delighted with the outcome of the ESA votes (If the peer in question voted our way on ESA, you could add a thank-you here) - finally some hope that we are being heard. It was, therefore, with great concern that we heard that one of these amendments may have essentially been overturned - especially because of the circumstances surrounding the vote which to an outside observer seemed somewhat underhand.

I'm sure that by now you will have seen a copy of Reponsible Reform the 'Spartacus Report' (linked here) and we would ask you to read it if you haven't already. It outlines a number of concerns surrounding proposed reform to DLA. While we are not opposed to reform of DLA in its own right, we are concerned that the motivation behind these particular reforms are primarily financial. Whilst we understand efforts to eliminate fraudulent claimants, we are worried that the negative effects of these reforms on genuine claimants will significantly outweigh any benefit to the economy. Removal of support for disabled people and carers is also often a false economy, because the costs get shunted to another part of the system (for example to the NHS if reduced support causes health crises).

You might want to include your own story of how DLA reform will affect you here.

Please remember sick and disabled people and carers in the continuing debates and votes - you have our future wellbeing in your hands.

Thank-you, etc

Emailling peers

We can crowd source a bit of a plan in the comments =]

I'm thinking an email needs to include :

- thank-you to those who voted with Patel yesterday

- expression of concern over Freud's funny business last night

- a mention of the Spartacus Report and encouragement to those who haven't to properly read it before DLA/PIP votes (we will include a link to the report which is here even thought they should all have a copy)

- why DLA reform is bad, the basics (we could use this letter as inspiration)

- any personal stories / messages folk want to add

On this link there is a list of peers which links to an info page which has their email address on it if they have one. We could split them alphabetically, by party etc so that people don't have too many to email each?

Guardian Society Live Blog

Go here to see the Guardian Society Live Blog of happenings with the Welfare Reform Bill.

They are asking for our input - tell them what you think they should be covering, and why.

This is another important chance for us to shape the story. The comments thread already has comments supporting welfare reform - let's (politely) tell them why it can't happen, at least not in the way that is being proposed by this bill.

You can get in touch with them through the hashtag #wrbliveblog or by tweeting @patrickjbutler or @lauraoliver - or get commenting on the blog itself.

--

I would also really like to get an idea of who has emailled MPs/peers over the last few days and about what - if we coordinate, we can cover ground more efficiently

#Spartacusreport or 'Responsible Reform'

Below is a link to the press release announcing the release of 'Responsible Reform', a report on proposed reform to Disability Living Allowance (DLA) written, researched and funded by disabled people, care-givers and allies. This is incredibly important. Please read the press release, and consider sharing the report on your social networks or emailling it to your MP. Consider getting in touch with the BBC or other major news providers and asking them to report the story (easily done via twitter @BBCnews @channel4news etc).

Thank-you.

The link to the press release is here

An article in the guardian outlining the issues can be found here

The full report can be found here


Please add your voice to the many and varied folk showing their support (we have been trending on twitter almost solidly since 10am!) - celebrities, politicians, charities and most importantly disabled people and carers, those who will be hardest hit by the government cuts.

"Alone we whisper, together we shout"

#WRB

Edit : I realise a lot of you will have no idea in hell what I'm going about. The Welfare Reofrm Bill is at the report stage in the HoL and they've been voting on some amendments to the bill.

I *think* what we've just heard is this :

Ld Best's amendment 12
Page 5, line 2, after “credit” insert “, subject to subsection (3A),”

goes in here like this
The calculation of an award of universal credit "subject to subsection (3A)" is to include an amount in respect of any liability of a claimant to make payments in respect of the accommodation they occupy as their home.

And amendment 14 adds this to 3A (which the award of UC is now subject to)
In relation to a dwelling of which the landlord is a local housing authority or a registered provider of social housing, regulations under this section shall not permit the housing cost element of the universal credit to be less than the actual amount of the liability in a case where a household has no more than one spare bedroom.”

Which I think means that social tenants can't be penalised for having 'no more than one' spare room.

Week 1 in summary

I spent last week sleeping a lot, listening to old BBC Ouch podcasts, live tweeting * the committee stages of the Welfare Reform Bill in the House of Lords at #wrb, reading a most interesting book about the intersection of queer and crip theory, making sure the new-and-beautiful wheelchair has in fact been ordered, eating a lot of cake, defrosting the freezer twice and consequently shopping around for a new one online, darning my socks (no joke), hopping around the blogosphere adding to my blog reader, making a giant to-do list of all the bits and bobs I have to sort out this year and making another to-do list of lovely things I could do this year (which so far includes visiting lovely best friend often, learning to make good bread, making some pretty craft / sewing things and learning some BSL).

In short, I've had a week of holiday. Want to know the best bit? This week is a week of holiday as well! After that I'll be getting on with that giant to-do list...

*live tweeting = tweeting what happens as it happens, in this case because so many welfare reform campaigners are unable to access the video feed (for example folk who are D/deaf/HoH, folk whose internet doesn't do streaming, folk who find it hard to follow what's happening because of fatigue etc).

Profits Over Justice

Had proper post planned today, but instead spent a couple of hours live-tweeting the 2nd reading of the welfare reform bill in the Lords. If you're interested see #wrb on twitter.

I've also been keeping an eye on #stopDSEi - the hashtag used by those protesting the fact that one of the biggest arms fair in the world has opened in London today. See here for more info.

I can't help but draw parallels between the two - both are focussed on profits over justice, both are in fact spending money gathered from taxes to make lives worse for the majority and better for the minority who stand to gain.

Everybody dance now!

Yesterday I went to the wedding of two dear friends. It was a lovely experience from start to finish (except for the downpour I got caught in yesterday halfway down a hill in the wheelchair, which was slightly hairy!) and I used the chair pretty much the whole time.

Assistance on the trains was organised, and if anything slightly overenthusiastic (I'm sorry my love, but if you try and push me with one hand while also pushing the ramp, I will fall off the edge of the platform!), the accessible room that we stayed in had 3(!) emergency cords (all of which reached the floor I might add) and all the taxi drivers had huge boots (that is not a euphemism).

My favourite part of the day though was dancing at the reception. I normally hate discos, because I feel very self-conscious, and I can't stand up for long enough to meaningfully join in. (Plus in Scotland most parties have ceilidhs, and those are a spetacularly bad idea when your body isn't properly held together!)

Last night I danced for 4 hours straight - longer than anyone else - and, although I ache like hell all over this morning, it was well worth it. To start with, when I wheeled out on to the dancle floor, I had no idea, well, how. I mean, I've seen videos of Wheelchair Dancer in action, so I know it's possible - but I couldn't hope for those awesome standards the first time out! Add in that I wanted to dance with Beanie (to whom I was at boob height) and that the dancefloor was quite chaotic, and I was stumped.

It took a while to crack it, but plenty of being spun round at speed, giggling and a glass of Pimm's later, and I didn't care how silly I looked- I was having too much fun! I do believe video footage exists so I might give you a sneak peek. I wished that my GP could see me being so 'limited' by the chair.

--
I was a little bit overwhelmed when Bendy Girl alerted me to the fact that my blog post had be mentioned in the Guardian Society Daily. I made a bit of a squeaky noise and shed a little tear.

On a related note, it's good to see more medics speaking out against NHS reforms - I know that there has been a lot of 'grassroots' opposition expressed on twitter, but most of the doctors I've raised it with on placement have barely known anything about it. I've been trying to spread the word a bit, but I just can't seem to find an angle that interests folk. The lack of awareness about the structures and politics surrounding the NHS among doctors is something that I find *really* difficult to deal with. I just want to scream "but how can you not care? RARRR".

I do wish that more of them would speak out against the welfare reforms as well. These are having a huge impact on the patient population, and I'm a bit confused as to why they're being so resoundingly ignored.

Systems can be changed

Firstly, thank-you all so much for the lovely comments about yesterday's post, and to those who published it more widely. It reminds me of how lucky I am to be trusted with people's stories, and how I can best steward those stories. My responsibility to my patient's can never stop at the ward door, even though the overwhelming pressure is to act like it. I am thankful every day for the friends - online and off - who remind me that justice is more than political correctness and that systems can be changed.

And just to make sure that I remember the wider justice issues within the NHS/social care system, today I read Max Pemberton's latest tome 'The Doctor Will See You Now' all in one greedy gulp (well, I did have a 4 hour train journey to kill...). This book covers his year after (what is now) the foundation programme as he starts the process towards specialising in old-age psychiatry. He covers many really important topics, and covers them very well - his passion for his work is evident, and he beautifully illustrates the unjust treatment of older people within the current system.

His book has given me some ideas for posts looking at other issues of justice within the NHS, including :

- The treatment of older people and those with dementia

- Food and the NHS

- The NHS and 'non-professional' carers

- Physical health problems in psychiatric patients

- Speaking out against injustice / whistle-blowing

- LGBTQ individuals and the medical profession

- NHS dental treatment

- Working conditions for auxiliary staff

I also have some public health geekery to throw your way! Don't worry, it's wicked cool stuff, and a good framework for some of these discussions.

Something I also want to explore further is the structure of the NHS. Do you know that the whole way through medical school, noone teaches you about the history of the NHS, how it is structured and governed and so on? I may be showing my cynicism when I tell you that I believe this to be deliberate. It's much harder to fight a system when you don't know what you're up against...

So tell me : where do you see injustice within the NHS? Do you feel you know enough about the NHS as an organisation? Do you know of any good resources for learning more about the NHS? I would love to hear your thoughts =]

I wish that you could change their minds.

I tell myself that if I brought them to you - the people who suggested these dangerous bills, those who supported them blindly, or with conviction, or against their better judgement, those who had the chance to stand up and say "no", and didn't even show - I tell myself that if I brought them to you, they would change their minds.

You would invite us into your cubicle, and I would draw the NHS-special-issue sound-proof curtains around us. When we were sitting around your bed, I would help you to lift the oxygen mask, and you would tell them what they're doing.

I tell myself that we could explain it to them, and that they would get it, and it would all be alright. But they know. They know exactly what they are doing, and they don't care. Either that or they're in such Westminster denial that they actually believe the stories they spin themselves. Why would they listen to your story when they've ignored everyone else's?

With tears in your eyes you would repeat the stories you've told me - about your care hours being reduced (because the cuts aren't looming in the distance - they're already happening). I will hold your hand as you tell them that your husband can't cope, that he is grey with worry and not able to sleep.

They will say "what about a nursing home?", "how would I pay?" you reply, "and tell me one in my area that would have space for me". (It would have to be close to home, or else you would be trapped there, with no visitors.) They make it sound so easy - they have no idea of the paperwork, and the pleading, and the postcode lottery that can be involved in accessing appropriate care. And being in residential care in your 30s is no easy solution, especially given the standards of 'care' so many receive.

You tell them about the neurologist who diagnosed you, finally, after you were messed around and ignored by so many doctors. She listens to you, she has known you for years, and she has become an expert in your condition and the ways it affects you. One of your biggest fears is that you won't be able to see her any more, that instead you will become a patient of T*sco's own brand neurology. I wish that I could tell you that this would never happen, but it doesn't sound so far-fetched these days.

Your voice steady, you tell them that if your benefits are cut you will kill yourself, that you are both in debt, barely scraping by, and that you would have no other option. You ask them not to take away the little dignity they have left you with - the ability to (barely) feed and clothe yourselves, to keep a roof over your heads.

They will tell you that you'll be fine - that you have "nothing to fear". If I brought them to you, and you told them your story they would say "No, you've got it wrong - it's not you the cuts target, it's the others. We're making the benefits system easier to navigate for you, we're sending the fakers, the manipulators, the scroungers back to work so we have more money to spend on you. We're making healthcare competitive so that they have more incentive to treat you well."

Before we can even process how deluded these people are by their own rhetoric, a camera flashes in your face (the photos will appear on the news websites later - you surrounded by smiling politicians) and they are gone.

[The 'patient' is an anonymised composite, but the stories and fears are very real. The HofL's 2nd reading of the welfare reform bill is very soon. Use this template to write to them, and/or keep an eye out for a Hardest Hit action near you if you're able to participate.]

Brainfog

Beanie has just explained less-than-fulltime stuff to me in a way that makes actual sense. Gogocaptainbrainfog. (Although it does seem that to do so has required a more sensible website than any I managed to find on my own.) It looks like we've made our decision, despite the best efforts of the med school to confuse everything. We link applications, go where the wind blows us, hope it's our home deanery so that we have a support network to do this thing, and I apply for less-than-fulltime and hope that wherever I end up is a flexible as it sounds they can be.

Please remind me of this very sensible, and not all that complicated plan the next time I have a meltdown*?

I will aim to return to less panic-stricken, more on-topic posts in the next few days, everything being as it is. Although what with the imminent dissolution of the NHS and the welfare state, there is no guarantee that on-topic posts will be any more relaxing.

*All forecasts seem to indicate 7.30am tomorrow when I'm about to leave for placement.

Round Up

Today's post will cover a few bits and pieces - including Daisy's promised introduction to the NHS couch to 5k programme (she's going to keep us updated on her progress over the coming few weeks). There are also some news stories about disability or the NHS that I would like to highlight.

Hi, I'm Daisy and I'm Flo's fiancee. 4 weeks ago I started couch to 5k using the NHS choices podcast. I would thoroughly recommend couch to 5k to people who are interested in taking up running and don't know where to start. I can't believe I've been running for 4 weeks and I'm excited to tell you a little bit about why I decided to start running and to maybe review some running podcasts/apps for beginners. In my next post I'll explain how the c25k program works and why I started. I look forward to sharing this with you!

We've been asked to spread around this open letter to Iain Duncan Smith from the Broken of Britain, about how it feels to hear a life changing diagnosis, what it feels like to be ill, what it feels like to be a carer or to worry about a family member or friend and their health. It felt especially relevant yesterday, as we were getting our head around the fact that yet another thing has happened to make us feel vulnerable. Please consider sharing that link on your networks, to encourage people to remember that any of us could become ill at any time.

Today (I think) the Commons will release a negative report on ATOS "healthcare"(Guardian story here), the (IT) company who have been contracted to conduct "assessments" for DLA and ESA. There are some awful stories of bad practice out there, assessors are expected to deny people, and the huge number of individuals who are then granted at appeal shows how ridiculous the system is. Reports are almost always completely inaccurate, but it is hard to refute, as any form of recording is not allowed (without huge effort and expense as they require a trained engineer to examine the equipment beforehand). ATOS and the ridiculous system of computer assessment are the reason I have still not claimed for DLA (once I was aware of it), although I have been eligible at various rates for over 10 years now. And now everything's changing, to make these benefits harder to claim. I'm really scared about what will happen to some of my friends and patients, and to me - especially if the appropriate adaptations cannot be made to enable me to work.

Next, Bendy Girl has posted a great video showing what happened at the first 100 Voices conference (you should watch her keynote speech also, it was very well pitched)- a real first - the Brandon Trust (a Bristol based charity supporting those in SW England with learning disabilities) asked their clients with learning disabilities what they wanted their priority to be for the upcoming year. The video is a really inspiring example of facilitating people to make their own choices, rather than patronising them. It's made me think really hard about how I would try and facilitate an individual who was learning disabled to make decisions about their own care. Employment was the issue voted as most important (the variety of voting methods offered was really cool) and the Trust has committed to taking that forward.

This week, the government slipped out the first wave of privatisation of the NHS in the middle of the Murdoch enquiry. Luckily twitter is wise to that trick. Here Max Pemberton argues that this truly is the end of the NHS - because while any aspect is privatised, it is no longer a national, nationalised service. I'm worried, and mainly because any examples of private contracting of other services by the NHS, such as cleaning, seems to have been linked with a reduced quality, because people are treated like crap (but it's ok because it's not directly the NHS doing it...) and so it's not worth it and they're not motivated to do a good job.

I hope you find something to interest you in there. Following yesterday's A and E trip in my placement hospital, tomorrow I'm going to talk about different experiences of A and E. I also took part in my first twitter-based journal club on Sunday. I really enjoyed it, and will post about it later in the week. (Google for more info, their exact twitter name escapes me, but the tag is #twitjc)

Have you come across any stories this week you want to share?

Happy birthday?

Hello gang =)

You won't know you should have missed me, because of my cunning use of that thing what lets you make posts happen from the past (from the future?) when you don't know if there will be internet, but you should have! Don't worry, I'm back...

So, how's this for an I-love-my-life story? I had been in the land of my beloved for a little over 24 hours when I had an unholy puke attack. Charming, I know, but I made a promise with myself to be honest in this wee corner of the blogosphere (not that I'm dishonest in another corner of it, you understand). This means, if you're keeping track, I managed one day of elective, before having two days off sick. How's that for making a good impression? Plus I forgot my meds last night and therefore didn't sleep just to maximise my awake with noone to talk to time.

[pause to give some love to daft cat]

The psych post that should have appeared for you today, combined with a conversation I had with a very-mini-patient's mum the other day have got me thinking.

I know that the post is fairly cheery in tone, and there's no reason for it not to be as I coped with the placements in psych pretty well, my experience of mental health services from the other end was almost universally not good (with the exception of one awesome adolescent consultant, and one equally awesome therapist). Not to mention my recent experience of being diagnosed with a condition that noone's heard of, and everyone's a bit scared of because it doesn't get better, and that makes them feel impotent or something.

This is a not particularly articulate way of saying : every time I think about government cuts, every time I feel the impact of them, every time I see patients hit with them, it makes me angry. We didn't need less of this stuff - we needed more.

More support for psychiatric service users/patients (I realise that I always say patient because I prefer it - if you don't, I apologise) in the community, more provision for pain management courses and ongoing physio for those with chronic conditions, more support for mums who've just been told that their baby will never talk to them. If you want us to work, you need to find us a job that we can actually do before telling us that we are fit for work, you need to not cut funding to groups who working to end discrimination in the workplace, you need to make laws that don't grovel and beg, leaving more loopholes than a rollercoaster.

We needed more, we deserved more, we are worth more. And I can't be coherent, because it doesn't make sense to me. I can't be coherent because I am scared for myself, for my friends - old and new, and for that little baby and his mum.

This is a time when services need strengthening, to build up to deal with our ageing population. We can deal with these people in two ways - primary and secondary prevention, which saves lives, quality of life, and money, or not. If you've only 5 years to persuade people to not vote for you again, the cheaper option is to cut early intervention services. Because the cracks won't show for a few years, and the next guys'll be the ones who end up raising taxes to deal with it.

The NHS turned 63 yesterday. I don't think it's overdramatic to wonder if she'll make 70.

We are living in strange and scary times my friends, but there is hope in the fight, I think.

Solidarity

I'm really tired.

Over the last year I have watched in horror as the government systematically removes money from the very people and groups who most need it. I have sat here in my flat watching twitter, and the news while thousands gather to protest, because I could not be there myself. I have read story after story of people who will be left with no way forward, with no independence, in poverty and isolation, with worse care - medical and personal. People whose future are swathed in uncertainty.

I have done a bit - I have joined in every online campaign that I've heard about and I've spread the word a bit among some of my friends about what it is that's happening. I have done a bit, but others have given everything that they possibly could have. I have been following the blogs of Sue Marsh and Kaliya Franklin, and I would ask you to read this tonight. These ladies don't have reserves right now, they need more people to join them in saying that this cannot happen in our name. This cannot happen to us - to our partners, our friends, our families. This cannot happen.

I can't do any more right now. I am too tired, and and what I have left I need for doing battle with the med school so that this isn't so tough for the next person. I have posted this here, and I have sent it to my MP. Please show Sue's post to one other person, post it on your blog or facebook, send it to your MP. It's really important. Please read up about what the government's plans will mean - The Broken of Britain is a good place to start.

This is already having a real, and serious impact on people's lives. If it hasn't affected you yet, it will. There is no time left for waiting. Do something, tonight.