Tuesday 3 February 2015

RIP Lucy Glennon (@lucytweeting)

I've just found out that Lucy Glennon (@lucytweeting) has passed away.

Those of you who knew Lucy will know that she was tireless in everything she did. Even when she was very, very tired. She always somehow found that last spoon to defend a friend or fight a wrong.

She was one of the first people I got to know on social media and she would often get in touch to see if anyone was writing about a particular disability story of the day or if we were "live-tweeting" a parliament debate.

I've met just a handful of people campaigning who simply march on, resolutely, no matter what obstacles are put in their way. "Over there, in the distance" is a condition so painful or cruel, they simply force themselves to look away. It is always there, yet never there. It controls everything they want to do, yet controls nothing they need to do.

That for me was Lucy. She couldn't bear injustice and fought it however tired she was that day. If it was no-one else's "job" it would be hers to speak for those she worried were voiceless.

I suppose because of her remarkable resolve, I thought of her condition, Recessive Dystrophic Epidermolysis Bullosa as something "over there" as well. We made each other laugh on dark days, shared recipes on Twitter and discussed  our dysfunctional bodies online in the hope it might inform others. But I didn't think of her as sick or vulnerable. I thought of her as a lion in a cute hat.

You can read more about Lucy's life here : http://benefitscroungingscum.blogspot.co.uk

You can donate to the Sohanna fund for EB fund here sohanaresearchfund.org

Friday 9 January 2015

New Job

"I've agonised about how to write this post, but as with everything, honest and from the heart is always best. 

Those of you who love and trust me I hope, will be pleased. 

Those who doubt my intentions and goals and those with different goals to mine will almost certainly be critical, and, in a sense, I understand that response. If I didn't know me I might  be sceptical too.

I've devoted the last 6 years of my life to doing anything and everything I could to improve WCAs (Work Capability Assessments for ESA, Employment and Support Allowance)
I've negotiated with people I did and didn't want to, I've worked with any group or individual with a genuine concern for those experiencing the assessments. I've worked with media and politicians of all parties. My only concern has ever been for the people - like myself and some of you - going through the process of assessment. 

My own work assessment for sickness benefits (you can read about it here : http://diaryofabenefitscrounger.blogspot.co.uk/2010/10/how-sick-is-sick-enough.html was a ludicrous and unpleasant process from start to finish. The initial letter was threatening and scary, and the centre was totally inaccessible in the middle of a red no-stop route. The waiting room carpet was stained and smelled of urine. When I did get asked to go through, after a lengthy and nervous wait, it was into a small empty room, with a camera, grills on the windows and just a table with two chairs facing one another in an interrogational confrontation. 

Though my application was successful, the letter to confirm my "success" - being written off to a lifetime of £108 per week - was almost unintelligible even to my admittedly illness addled, but nonetheless, degree-educated brain. 

I didn't hear a thing from anyone throughout the process, which in total took me about 8 weeks - I was lucky, average waits have been 26 weeks. Half a year. The letter didn't even tell me how long the award was for. 

None of this is acceptable, none of it will ever tell us much about the capability of the person being assessed. With a toxic reputation amongst those who must claim it, those who administer it and those who report on it, none of the many Harrington/Litchfield recommendations appear to have led to the kind of change necessary for a fair and valid test. 

It is not inherently a good thing for Support Group numbers to be high. If some of those people who qualify would actually rather like to work, but are terrified of an intimidating and farcical system of support that actually leads to a life of fear of change. Being terrified of an assessment letter or experiencing actual anxiety and distress every time a brown envelope from the DWP falls through the door is never going to lead people to engage. I know, I wouldn't have dreamt of it. I was terrified of the brown envelopes myself and I hoped a sensible system could be in place before I ever had to go near another ESA assessment. However, it's a brave company that attempts to make reasonable adjustments for my kind of impairment and any that does will face many new challenges.

We are coming up to an election period. There will be a hiatus and a time to breathe and take stock. There is a new provider, MAXIMUS and the new contract to provide WCAs as well as a wider range of disability benefit assessments.  It is considerably more costly than the old Atos contract. Simply put, there will be more money, and they always say "follow the money". I'm not overly concerned with the stuff for myself, but it can be the difference between success and failure in the "real world".

If there was ever a time to get significant and valuable changes to what now seems universally accepted to be a system that is in serious need of better delivery, it is now. And delivery does matter. It does matter that people are treated with respect, it does matter that people with already often difficult and challenging regimes are not put through any more stress or anxiety than they need to be.

Is it enough to achieve procedural change? Many think not and both Harrington and Litchfield have asked that change comes more quickly and thoroughly. Many are abolitionists - - the latest Work and Pensions Committee report recommends fundamental root and branch reform of the whole process and Litchfield seems to believe that further change will inevitably come too. 

But it does matter that there are accessible formats in order that everyone can   more readily and easily understand the various requirements for support – including documents, forms and letters. It does matter that the assessments feel collaborative, rather than intimidating and that people get a chance to engage properly in the process. It matters that people who want to work, who can work and need support to do so, are assessed in a way that such support can materialise, whatever the impairment. But that signposting and joined up approach simply doesn't exist at present. The two are still entirely separate.

And so to the point. From today, I will be responsible for making sure that as many of those improvements are made during this period of change and pause as possible. MAXIMUS have asked me to be their Head of Customer Experience, and it seems, have given me fairly free reign to devise a strategy to bring about a wide range of improvements to the service from a customer perspective.
The job covers all aspects of customer experience and the easiest thing I can do is copy the job description below.  I hope anyone I've already lost to explosions of horror might at least take a look at it and imagine me doing the job. It is not insignificant in scope. 

Of course there are considerable benefits to both myself and MAXIMUS in this development. I will be giving the same 300% passion and commitment to them that I have been giving to campaigning. I won't be writing about them, I'll be working with them. 

Crucially, it's a campaigner's job  to change things, not just to make a lot of noise. That noise is supposed to lead society, stakeholders and commentators to the point where real change can be achieved. 

In the last 6 years, I never felt that was the case, but at this moment in time, finding myself in this exceptionally unexpected situation, I simply believe that I can do more good now, here, by doing this, than I can do with all of my other interests. 

Whilst I have to make an enormous - almost cosmic - mindset shift to take this direction, MAXIMUS also have to bring me into their trust and with very little to go on, accept that I will attempt to do the job as skilfully and imaginatively as I can. My past opinions have hardly been filtered. Everyone knows that I'm obsessive about changing this, Giving me a job to keep me quiet would be to not know me at all. 

I've had just 3 weeks to think about all of this and come to terms with it. I've already done my worrying and wondering and weighing up. I've already had to decide to change absolutely every last thing about my life and take this step. My husband will give up work - he's already resigned to support me and care for us all, amazing man. I will be working full time, I will lose almost every bit of support I currently get from the social system, I will face criticism, I might hurt people who are disappointed. These are all huge considerations.

But I have to try to finish what I started. MAXIMUS have the contract. Things are being re-thought now. The election period is coming now. The job was available now. 

Someone is going to do it. I can do it, with all of my knowledge and personal experience of what is wrong with the system at the moment and a rich research background to draw on from the Spartacus Network reports and all of the other amazing research done by DPOs, charities, individuals, groups and academics over the last few years. 

If everything continues as before, if change is achingly slow and the reputation of ESA remains as toxic as it ever was, then by me taking on this job, it won't be because no-one cared. It won't be because no-one knew what needed to be done. I believe that I know what to do and there's no doubt that I care. Harrington and Litchfield have recommended what to do, the Work and Pensions Committee have recommended what to do. My own Spartacus Network and many others have recommended what to do. 

Now it just needs to be done. Positive change will take time, but I believe I can help effect that change.  Whatever becomes of ESA and WCAs and whatever party wins power and however public opinion waxes and wanes, whatever assessment may or may not exist now and in the future, it has to be as good as it can be. 

Whoever administers the contract - and now it will be MAXIMUS - if they can make it caring, dignified and clear to understand, whilst making it very clear that decisions are ultimately not taken by them, but by the DWP, then there is no reason for this to be a toxic contract. Clearly, I hope it won't be. I hope I can make a difference, and I'm confident that if I can't, then no-one could have. 

My life will change completely, as will the lives of my family. Yet again, they will throw every last card up into the air and support me to do what I need to do. And I do need to at least try to do it. I need to see if WCAs can become something people don't dread or disdain. But the thing that won't change is my commitment to trying to get it right. That will never change whoever I work for and whatever I do."

Job Description 

Job Title:                   Head of Customer Experience
Reporting to:            Service Management and Improvement Director

Purpose of the role

Reporting to the Service Management and Improvement Director, the Head of Customer Experience will continuously appraise the various aspects of our service to deliver and focus improvements from the perspective of the customer going through the experience.

Key Accountabilities

Define and communicate the new Customer Experience vision by fully engaging with internal colleagues as well external parties including the Customer Reference Group, and other interested stakeholders.
Outline “the journey” to achieve the customer experience vision including key landmarks and measures of success.
Undertake research and analysis activities to build a first-hand understanding of the current customer experience as seen through the claimants’ eyes, across all touch points.  Establish an improvement cycle by formalising regular inputs from stakeholders, claimant complaints received, quality assurance findings, and other sources.
In collaboration with the leadership team, managers, IT and other relevant departments identify potential service improvements that would enhance the experience of customers. This will require the Head of Customer Experience to work collaboratively with all business leads and stakeholders and contribute to the development of business cases for improvements.
Play an ambassadorial role in developing a stronger “customer experience” mind-set and culture within the business, ensuring that all employees are absolutely consistent in their understanding of what their contribution is to the customer experience.
Report on the activities conducted, summary of findings and recommendations made on a monthly basis.
Continue to develop practices and build a collaborative network of internal and external stakeholders with the goal of establishing a strong reputation for customer focus and improvement.


Essential Experience
  • Able to demonstrate experience in a leadership role with an established relevant network in the sector and a reputation for delivering exceptional “customer experience.”
  • Strategic planning & delivery leadership.
  • Experience of operational management
  • Project leadership on a multi-site, multi-stakeholder level
  • Creativity to innovate
  • Analytical, research orientated
  • Commercial acumen – justifying investment
  • Customer engagement/focus
  • Project management – delivery focussed
  • Change orientated
  • Influencing skills
  • Attention to detail
  • Communication & presentation skills
  • Decisive leadership
  • Inspirational
  • Results orientated