Welfare For The People, By The People - A Consultation

Did you ever wish you hadn't started something?

When I started this blog, I had some hazy idea that perhaps I could share my stories and it might help other sick or disabled people to feel connected. I thought I'd tippety-tap away now and again, saving my poor hubby the trauma of 24/7 news bulletins and political rants.

I didn't for one minute think many people would notice. I'd used the odd forum here and there and imagined a kind of cosy support group where "spoonies" "sickies" and "crips" could enjoy reading the ramblings of someone who actually "got it"

I didn't think I'd find myself reading endless transcripts of a dangerous and callous welfare reform bill. I didn't think I'd be on radio shows or in national newspapers opposing cabinet ministers. I didn't for one second imagine my blog would shoot into the top 50 political blogs and stay there and I certainly didn't think I'd be invited to the Compass conference next month as a guest speaker.

And that's just the stuff I can tell you about!!

You may have noticed fewer posts lately and if you knew the stuff I can't write about (though I will) you'd see why blogging is having to take a bit of a back seat.

I've always liked to learn and OH MY GOD have I been learning. In just over 6 months, I've read just about every theory put forward on welfare reform over the past two decades. I've read Blue Labour, Purple Labour, Policy Exchange, Progress & Compass reports, everything written by Iain Duncan-Smith, James Purnell, Frank Field and Jonathan Rutherford**.

Shall I sum them up for you in a natty soundbite?

"I despair"

Or another?

"Get a bigger stick, throw away the carrots and beat 'em to despair"

I read their "proposals" with incredulous dismay. I wonder just how many have ever actually experienced any of the problems they wish to solve. From the mid nineties, politicians who timidly took the first steps towards reducing the welfare bill have been encouraged to "think the unthinkable" and over the years, they've forgotten that it was ever considered unthinkable in the first place. The "unthinkable" is now not radical enough and, as I write on an almost daily basis, we've reached the tipping point. We are on the brink of removing sickness benefits altogether and disability benefits are to be slashed so far, that sick and disabled people have only the last resort of our judicial system.

We have reached a stage, where only the Human Rights Act or the European Court of Appeal can save us now.

Why? How has it come to this? When asked to "think outside the box", why did every last politician think inside a tiny, claustrophobic box tied up with ignorance-string? How did the "scrounger" narrative get such traction? Why did every last politician consider how to throw us off benefits with little care or concern for where we will go? Why did a succession of Oxbridge educated men choose to focus on a mythical hoard of cheats and skivers, convinced that with bigger and bigger sticks we could be forced into work? If fraud is just 1/2 a percent, what convinces these men that most could and should work? When medical evidence assures them that many of us can't and, in fact, work will make us worse, why do they ignore it?

Now let's see how successful they've been. Since 1994, successive "work programmes" and schemes have been rolled out to get sick or disabled people back into work. Has the welfare bill gone down? Has business embraced us and modified their structures to include us? Have the private companies, paid billions to find us work been successful?

No, No and No.

Not one single thing has changed in 25 years. The sickness and disability benefits bill has stayed stubbornly constant and work programmes have pathetic success rates of between 8 and 15% (almost identical to the number of people who find work on their own)

The solution? Cheat.

Change the descriptors, make certain that fewer people will qualify and break a million eggs to make a rotten omlette. Since Labour started "cheating" in 2008 the rate of those claiming sickness benefits has fallen. Now the Conservatives are about to cheat in such a spectacular way that the financial bill will certainly go down dramatically, but at what cost? Using the model of the past 25 years, this will be considered a "success" as costs will finally be cut. Eureka!! All they needed was one almighty stick and a sneaky bit of legislation or two that effectively all but stops sickness benefits altogether.

One might think that if a government are serious about stopping sickness benefits, they would have their best thinkers devising plans to make sure that the people affected had somewhere to go. That they wouldn't be left to starve without some pretty cast iron guarantees that there would be an alternative. One might think that there would be research available to prove that pulling support would in fact be empowering and manageable, but there is none.

Having said all this, we're no closer to finding out "why?" politicians are convinced that we can all pick up our beds and walk - or are we?

Ladies and gentlemen, I give you the "Psycho-Social Model"

Allow me to paraphrase. (The link above will give you the scientific stuff, I'll just put it in Sue-speak.)

We are all sick or even disabled because we choose to define ourselves as such. Despite our various diagnoses, those that manage to work have a better psychological grip of reality and do not become "victims". We choose to stop working from a lack of confidence or fear of failure and become lazy and plagued by doubts. The longer this fear develops, the less likely we are to find work and stay in it.

Any symptom, and disability can be overcome through perseverance and the right mental stance - we simply need re-training in our attitudes. Hence the conclusion we reach today, where you ask what work you can do, not how your illness or disability limits you. Those unwilling (remember none are unable) to find work they can do will be abandoned.

Time Limiting ESA will enshrine this in law. If you haven't overcome these "psycho-social" flaws within one year and found work, the state will wash it's hands of you. That's why the language speaks of "helping" us into work. The paternalistic state will stop our metaphorical pocket money and take away our sweets if we are disobedient. If "encouragement" doesn't work, there are a whole host of sticks to beat us with.

This also explains an assessment that focusses solely on what we are physically able to do and ignores any  pain or symptoms or distress. Pain and symptoms and distress can all be overcome according to the psycho-social model, they are simply a part of our psycho-social weakness; shields to keep the world away, to wallow in our own helplessness. If you can swallow or do up a button or pick up a penny, you must, no matter what it costs you, or you are simply allowing neurological impulses to get in the way of a full and financially productive life.

It might not surprise many readers to find that Frank Field and James Purnell are the most zealous advocates of a psycho-social approach to welfare. Reading my red-top precis, academics may nod sagely, believing there is much to recommend the theory. And that is the vast, putrid, hideous, terrifying problem.

If you don't have MS or bowel disease or cancer or schizophrenia or alcoholism or parkinson's or lupus; if your research is conducted in an academic bubble of theories and sociological studies and think-tank jargon, you might as well be designing policy for fish. However much an affluent, out-of-touch politician might think a theory is the answer to all their prayers, you simply cannot make an unsound theory fit reality without cheating.  An alpha-male, who has sailed through life without physical trauma, poverty or disadvantage, will simply be totally unable to empathise with the nuances of suffering. They can no more design a welfare system that works than I could design a new offside rule.

Until sick and disabled people start to put forward their own suggestions, their own answers, we will remain in the hands of ignorance and arrogance. Until we are at the heart of policy making, we will suffer policies that may as well have been designed by aliens. The time has come where it is no longer enough to oppose, we must educate and inform. We must save ourselves, because my endless nights spent poring over welfare papers has convinced me that we have no alternative. Privileged academics and politicians have proven themselves horrifically incapable of even beginning to understand our lives and if we are to get a welfare system that actually works for us, we need to start making suggestions. We have the experience, the knowledge and the understanding and they never will.

So today, please use the comment thread below to explain what would help you. Contribute your ideas and suggestions no matter how silly or unformed you think they are. Share your stories of trying to work and how the system has failed or supported you. Make them essays or make them just a few words. I don't care how long or short they are. Tell me what work you could do and what support you would need to do it. Does the state itself trap you? What could business do to enable you? Is there a working model that could suit you? What type of work would you like? Why is it unavailable? Do you want to work? Would it make you better or worse? Would it increase your affluence or plunge you further into poverty? In an ideal world, what would governments be doing to support you?

Remember, this is a brainstorm. Write anything. It can't possibly be more banal, mis-guided or unworkable than the suggestions of successive politicians.

Please help. Join in, engage, show politicians our endless strength, our great value and our hopes and dreams. Help me and I'll do my very, very best to help you.

As I started this article by explaining, I have been given a voice. I have the privilege of a platform. It's your platform too and I need you to share it. Otherwise, I might just end up as another mis-guided fool who thinks she knows it all. I can speak for myself, but I can't speak for you.


*Finally, please share this article with anyone you know who suffers from a chronic illness or disability. Urge them to contribute to the consultation, tweet it on twitter, share on Facebook and email to friends. Any consultation is only as good as the people who take part. It needs variety and balance. Thanks. 


**Rutherford is the one beacon of hope. He exposed the psycho-social model and opposed incompetent welfare reform before most of us knew it existed. Read more here 

Posted by Sue Marsh at 09:07

Essay on Employment and Support Allowance #TBofBTT

by Lucia (notcrazy on The Broken of Britain forum) - an essay for a disability studies degree course

Employment and Support Allowance (ESA) was introduced by a Labour government in October 2008 (DWP 2011a). It was designed to replace Incapacity Benefit, and placed a focus on seeking employment. In order to analyse the theoretical rhetoric surrounding ESA and the reality of this refocused benefit it is important to outline the history and background that led to its implementation.

In the Seventies the Disabled People’s Movement campaigned for equal rights to employment, education and other services. (Campbell and Oliver 1996)They achieved this through the creation of a new social model theory that put the onus on society to change, adapt and include disabled people (Oliver 1996). In 1995 the Disability Discrimination Act was introduced as the government’s response to ‘the major barrier of employer attitudes towards employing disabled people.’(Roulstone 2004, p195) This Act enshrined in law the legal protection of Disabled People in certain areas of society, such as employment and the provision of goods and services (Legislation 2010). Although this law was seen as progress, according to Corker (1999) there were still several problems with the Act. The definition of disability was based on a medicalised ideology and it wasn’t broad or clear enough, leaving it open to be misinterpreted and misdefined. Due to the reactionary nature of the legislation and the difficulties in enforcement, discrimination still happened. Further, when discrimination did occur the onus was on the disabled person to prove that they were disabled and that discrimination had occurred. Corker (1999, p5) summarised the bill as ‘an ineffective legal instrument for tackling the institutionalised oppression of disabled people.’

As a result of the progress that was seen to be made in the emancipation of disabled people the government introduced E.S.A. The rationale behind this significant shift in ideology (self evident in the new name) was a focus on employment as a way out of benefit dependency and further emancipation of disabled people (Harrington 2010). The former benefit, called incapacity benefit (IB) focused on a person’s incapability’s whereas the new ESA focuses on a person’s capability to undertake employment. By introducing ESA the government wanted to stop the “neglect” of disabled people who had come to rely on IB. According to Grice (2010) Iain Duncan Smith says that ‘we must not park people on benefits’. The creation of ESA was designed to encourage disabled people back into work. According to government rhetoric (although the link is not overt) it was designed around social model ideology, although according to Finkelstein (2004, p16) this is a more ‘vague, confused and sometimes alien’ concept compared to the original. The aim was to encourage and enable people to become actively engaged with the economy through economic activity (IE jobs) (Harrington 2010). Within ESA there are two groups, the support group and the work related activity group (DWP 2011a). This is further evidence that underpinning this benefit was the social model ideology (all disabled people should have the opportunity to work) and emancipation of disabled people (Campbell and Oliver 1996). It sought to enable people by recognising the barriers that disabled people faced in seeking employment and working with them to overcome the barriers. This approach is delivered through the work related activity group. This group of people have been deemed as capable of some form of employment and are required to attend a series of appointments to discuss potential activities with the aim of a return to employment. The support component has been designed to recognise that for some disabled people a return to employment isn’t likely to be a realistic goal, and support should be provided for these people in the form of an enhanced payment and no requirement to undertake work related activity. (DWP 2011a)
It can be argued that the underpinning values of this benefit are flawed. According to Harrington (2010, p16) ‘the positive effects of work and the negative effects of worklessness are clear’ suggesting that your value is determined by your economic wealth, and your ability to work. However according to BBC Ouch (2007) ‘A human being is not an economic unit’. BBC Ouch (2007) goes on to argue that there are other ways in which it is possible to contribute to society based more on the skills you have and how you use those to benefit others. Such examples include voluntary work and education. In placing such a high value on employment above other activities could result in a narrowly focused and inflexible benefit system that fails to recognise the value of a person’s skills and not just their economic value.

As well as having an agenda of emancipation driven by the social model this policy change was also driven by the obvious economic benefits to society. If there are an increased number of people on long-term benefits then this is of great cost to the taxpayer. ESA wasn’t overtly aiming to reduce the costs involved in providing this support, as the inclusion of the support component demonstrates. However this was clearly an attractive side effect of this shift in ideology, (Harrington 2010) which became a more prominent effect from its early implementation to its subsequent continuation under a new government with an agenda to cut the welfare bill.
The difference in the original ESA policy and rhetoric and its current practical implementation are vast. Blunkett (2011) argues that ‘he agrees with the principle of the benefit but not the practice’ suggesting that a large part of this could be the difference between the current Coalition and Labour’s ideology. However, it is important to recognise that Labour was in government during the first two years of implementation and was responsible for its introduction and that other factors have also contributed to this policy practice gap.

When this benefit was introduced for new claimants only in November 2008 the economy was relatively stable and there were still opportunities for employment in various sectors. However, since this time the recession has increased unemployment and the competition for jobs. This has also increased the national debt and the cost of living has increased dramatically. These economic factors in combination with the new government has shifted the focus from the emancipation and support agenda that was eminent when the benefit was first implemented, into the wider economic benefits as the primary reason for the welfare reform. BBC News (2010) states that ‘the government is planning to reduce the annual welfare bill by 4bn pounds’ It could be argued that implementation has become more about the drain on the economy than the support of disabled people into work.

This can be evidenced by the Medias misrepresentation of claimants on IB and ESA. The demonisation of disabled people who are incapable of work can be demonstrated by headlines such as ‘75% of incapacity claimants are fit to work’ (Peev 2010). As these figures have been sourced from DWP press releases (DWP 2011b), and from MP’s themselves the government can clearly be linked to this practice which scapegoats disabled people and blames society’s debts on them (as well as all benefit claimants). Although the press have seemingly been negative towards those on benefits the ferocity and frequency of such claims have increased since the Coalition have been in power.
ESA was originally stated to be encouraging disabled people into work and not coercing people to engage in such activity. It was meant to be social model centred and focused on societal barriers to employment (Harrington 2010). However, the experience of claimants within the system would suggest that a culture of fear exists around ESA. This can be primarily seen through the reaction surrounding the Work Capability Assessment (commonly known as the WCA or medical). Claimants have to undergo a medical (WCA) after the first thirteen weeks of claiming (known as the assessment phase) to determine whether they will be eligible for the work related activity group or the support group, or deemed fit for work and transferred onto Jobseekers allowance (JSA). The medicals (WCA) are contracted out to a private company called ATOS. (DWP 2011a)

Claimants who have undertaken this medical are overwhelming against it. Evidence from reports, and both formal and informal personal responses (BBC Ouch 2011, the Broken of Britain 2011, Benefits and Work 2011a) indicate that claimants feel criminalised through this process and that capability of work is assumed and incapability must be proven (by the claimant). Further, according to Gentleman (2011) Paul Gregg, one of the architects of the new test has been quoted as stating that the ‘new test is a complete mess’, backing up the claims and accounts from groups and individuals. Due to the practice of the medical testing that occurs, 40% of the people who appeal the decision made after their medical are successful (Harrington 2010). The statistics generated after the first two years of operation and the pre-test of the national migration from IB in Burnley and Lanarkshire are in line with the government’s predictions (Harrington 2010). In a recent interview The Socialist Worker (2011) highlights the pressures that an ATOS employee is under to ‘catch out disabled people’ (Socialist Worker 2011) suggesting a target driven culture. It could be argued that the practical application of this benefit is flawed.

There have been several reports into the new ESA and its implementation. The first that this essay will focus on is called ‘Not Working’ (Citizens Advice Bureau 2010). This report was carried out by the Citizens Advice Bureau (CAB) and was supported by many different charities. It exposed the human experiences and the reality of the new benefit from the perspective of claimants and those organisations directly involved with disabled people. As the title suggests the report concluded that ESA was simply not working and not fit for purpose. It cited examples of seriously ill and disabled people found fit for work by a medical that overstates or excludes information, depicting claimants as more capable than they actually are especially in the areas of fluctuating conditions and in mental health conditions (CAB 2010). In the majority of case studies the negative decisions that were made were overturned by appealing the original decision. However the process of appealing a decision was also described as stressful and often exacerbated conditions (CAB 2010).This is contrary to the supportive culture that it seemed that the government wished to create with this benefit.

The second report was commissioned by the government at the end of the first two years of ESA to provide an independent analysis of the successes and to recommend improvements in the system. The WCA review (Harrington 2010) found serious flaws in the application of the benefit, especially focusing on the WCA from both the human experience and systemic and theoretical perspectives. He published a series of twenty five recommendations in his report that the government responded favourably to (DWP 2010). However, despite the governments recognition of the flaws and promises to implement the recommendations contained in the WCA Review (Harrington 2010) it still opted to continue with the national migration of those on IB before those recommendations have been implemented (Mind 2010). Further, it has also introduced a new set of criteria for assessing claimants that has been widely critisied for being to harsh and further reducing the eligibility criteria of the benefit (Parliament 2011). For example the ability to walk has been replaced with the ability to mobilise (Tameside 2011); claimants that are not capable of walking but theoretically capable of using a wheelchair are no longer to be eligible under that criteria.

There have been widespread campaigns that have attempted to prevent the national rollout of what is widely known as a benefit that is not fit for purpose (eg. The Broken of Britain 2011, Benefits and Work 2011b). Even the original creator of the WCA has publicly attested to that fact, and has petitioned the government to at least postpone the rollout until new guidelines can be established and tested (Gentleman 2011). However, the rollout still happened on the 4th April 2011, and there is currently no indication that these changes will take place or any recognition of the flaws in the system as highlighted by the WCA Review (Harrington 2010).

References

BBC News (2010). Welfare spending to be cut by £4bn, says George Osborne. [online]. Last accessed on 9th May 2011 at: http://www.bbc.co.uk/news/uk-politics-11250639
BBC Ouch (2007). Not Working, Not Whiling. Ouch weblog. [online]. Posted 24th July. Last accessed on 9th May 2011 at: http://www.bbc.co.uk/blogs/ouch/200707/not_working_not_whiling.shtml
BBC Ouch (2011). Ouch Talk. [online] Last accessed on 9th May 2011 at: http://www.bbc.co.uk/ouch/messageboards/F2322273
Benefits and Work (2011a). Members Forums. [online] Last accessed on 9th May 2011 at: http://www.benefitsandwork.co.uk/forum
Benefits and Work (2011b). News. [online] Last accessed on 9th May 2011 at: http://www.benefitsandwork.co.uk/news
CAB, (2010). Not working, CAB evidence on the ESA work capability
Assessment. [online]. Report from the Citizens Advice Bureau, last accessed 9th May 2011 at: http://www.citizensadvice.org.uk/not_working
Campbell, Jane and Oliver, Mike (1996). Disability Politics. London. Routledge.
Corker, Mairian (1999). The UK Disability Discrimination Act – disabling language, justifying inequitable social participation. [online]. Last accessed on 9th May 2011 at: http://www.leeds.ac.uk/disability-studies/archiveuk/Corker/UKDDA.pdf
DWP (2010). Work Capability Assessment independent review. [online]. Last accessed 9th May 2011 at: http://www.dwp.gov.uk/policy/welfare-reform/employment-and-support/wca-independent-review/
DWP (2011a). Employment and Support Allowance. [online]. Last accessed on 9th May 2011 at: http://www.dwp.gov.uk/employment-and-support/
DWP (2011b) Press releases. [online]. Last accessed on 9th May 2011 at: http://www.dwp.gov.uk/newsroom/press-releases
Finkelstein, Vic (2004). Representing Disability. In Swain, John et al, Disabling Barriers- Enabling Environments. London, Sage Publications Ltd. (p13-20)
Gentleman, Amelia (2011). New disability test 'is a complete mess', says expert. [online] The Guardian, 22nd February. Last accessed on 9th May 2011 at: http://www.guardian.co.uk/politics/2011/feb/22/new-disability-test-is-a-complete-mess
Grice, Andrew (2010). We must not 'park' people on benefits, says Duncan Smith. [online]. The Independent, 27th May. Last accessed on 9th May 2011 at: http://www.independent.co.uk/news/uk/politics/we-must-not-park-people-on-benefits-says-duncan-smith-1983890.html
Harrington, Malcolm (2010). An Independent Review of the Work Capability Assessment. [online]. Report from DWP last accessed on 9th May 2011 at: http://www.dwp.gov.uk/docs/wca-review-2010.pdf
Legislation (2011). [online]. Last accessed on 9th May 2011 at: http://www.legislation.gov.uk/ukpga/1995/50/contents
Mind (2010). Mind responds to Harrington review of the Work Capability Assessment. [online]. Last accessed 9th May 2011 at: http://www.mind.org.uk/news/4237_mind_responds_to_harrington_review_of_the_work_capability_assessment
Oliver, Mike (1996) Defining impairment and Disability: Issues at stake. In Barnes, Colin and Mercer, Geof, Exploring the Divide Leeds, The Disability Press. 29-54
Parliament (2011). Early day motion 1651. [online]. Last accessed 9th May 2011 at: http://www.parliament.uk/edm/2010-11/1651
Peev, Gerri (2010). 75% of incapacity claimants are fit to work: Tough new benefits test weeds out the workshy. [online] The Daily Mail, 27th October. Last accessed on 9th May 2011 at: http://www.dailymail.co.uk/news/article-1324035/75-incapacity-claimants-fit-work-Benefits-test-weeds-workshy.html#ixzz1LrqYkx8J
Roulstone, Alan (2004). Employment barriers and inclusive futures? In Swain, John et al, Disabling Barriers- Enabling Environments. London, Sage Publications Ltd. (p195-200)
Socialist Worker. (2011). Exclusive: ‘Sick firm told us to catch out disabled people'. [online]. 5th April. Last accessed on 9th May 2011 at: http://www.socialistworker.co.uk/art.php?id=24468
Tameside (2011). ESA Work Capability Assessment. [online]. Last accessed 9th May 2011 at: http://www.tameside.gov.uk/esa/wca
The Broken of Britain (2011). [online] Last accessed on 9th May 2011 at: http://www.thebrokenofbritain.org/

Responses Needed - PIP Assessment Criteria

The draft Assessment Criteria for the new Personal Independence Payment (PIP) were published here last week, along with some related documents and the draft regulations. The Broken of Britain intends to read through this material and set out our reply, but we need your help. We would like you to scan the assessment criteria and tell us whether the test would account fairly for your particular disability.

The PIP Objective Assessment Development Group will be considering comments received by 6 June 2011 before they test the likely impact of the draft criteria during the summer. You can write a paragraph here, or email rhydian@thebrokenofbritain.org with your arguments, and any other points that you want to make. If you want to send detailed comments of your own, send them to PIP.assessment@gsi.dwp.gov.uk directly. Whether you send your own comments, or contribute to ours, please get involved.

Essay on DLA reform #TBofBTT

by Lucia (notcrazy on The Broken of Britain forum) - an essay for a disability studies degree course

The recent proposal for a change in Disability Living Allowance (DWP 2010a) contained in the Welfare Reform Bill (DWP 2011) was thoroughly researched as part of the legislative process. The research seemingly aimed to involve disabled people through various means such as consultations (DWP 2010b). This was intended to enable disabled people to influence the reform and its policies. However analysis and comparison with Emancipatory disability research (Oliver 1997) clearly shows that this may not be the case in practice. Emancipatory disability research is one of many theories that policy makers can adopt when conducting research (Barnes 2003). The characteristics provide a different approach to traditional research methods employed when researching disability. Traditional methods tend to have an individualised and medicalised view of disability underpinning them with disabled people as passive research subjects (Barnes 2003).

One of the primary characteristics of Emancipatory research is that disabled people are actively involved in all stages of the research (Barnes 2003). For policymakers and researchers this can be a challenging task (Mercer 2003). Using the Welfare Reform Bill (WRB) as an example it was the government that set the agenda (and provided the funding) for reform (DWP 2010a). From the questions and the resulting outcomes of the research undertaken this piece of research had a medicalised and individualistic perspective underpinning the research (DWP 2010b). If the consultation had been more Emancipatory, which is underpinned by social model values (Mercer 2003) then more focus would be placed on the societal barriers to equal participation that exist and how welfare reform can best reduce their impact, However only one question focused on this (DWP 2010b). Twelve questions in the research were focused on how best to capture the medical proof needed to fulfil the qualifying criteria and how impairment and the impact that impairment has on everyday life (DWP 2010b). By utilising a medicalised perspective the research also implies that disabled people are passive recipients of care and support (Campbell and Oliver 1997), which places the power balance with the researchers and the governments own agenda. This can make it difficult for disabled people to influence policy.

Another key characteristic of Emancipatory research is that its ultimate aim is to empower disabled people (Barnes 2003). The government’s rhetoric surrounding the reasons for reform state that ‘The Coalition Government is committed to helping disabled people to exercise choice and control over their lives’ (DWP 2010b, p5). However upon analysis the reality of this statement doesn’t fit within an empowering Emancipatory research agenda. For it to be Emancipatory the source of the empowerment would have to be initiated by disabled people themselves making it authentic (Oliver 2002). This is another key characteristic linked with empowerment in Emancipatory research. The governments stated outcome of independence actually translates to less reliance on welfare provision. Disabled people have argued that it is only through this state reliance on provision that true independence can be achieved (Franklin 2010a, 2010b and 2011b). In reality this conflict would make an Emancipatory research agenda problematic for the government.

Another of the aims of this welfare reform is a reduction in claimants to Disability Living Allowance (DLA), which according to the government is essential to reduce costs (BBC News 2010). If disabled people were allowed to conduct and influence the outcome of research in the area of welfare reform the fear that the government would have is that it would increase the welfare bill and not reduce it. However, it is important to consider that disabled people have argued that by reducing the eligibility criteria for this benefit will increase the need for other types of assistance which are more expensive and that ‘DLA is already the cheapest way of funding these kind of care needs.’ (Franklin 2011a). She uses a case study to demonstrate that impairments still exist when criteria change and that taking away the funding for support doesn’t take away the need for its provision.

Another key characteristic of Emancipatory research is accountability (Barnes 2003). The research has responsibility to its subject group. This differs from the research undertaken surrounding DLA reform which is more accountable to the government. The shift to a more Emancipatory approach would also need a significant shift in the structure of how research is funded (Barnes 2003). Practically, it is in the best interests of those who undertake the research to conduct and report their findings aligned to whoever has invested in it (financially or otherwise). In order to enable Emancipatory research to become more widespread the bias and resulting outcomes would need to be allowed to develop during the course of the research itself. Emancipatory research doesn’t claim to be without bias but developed through the research itself instead of external factors influencing it.

Although Emancipatory research may seem to be limited to an ideological method of research when applied to a real life policy making process it still can play an important role in the shape of how research is conducted. Before the concept of Emancipatory research emerged through the social model ideology there was an imbalance in research approaches. If different types of research methods are considered along a spectrum, with a medicalised and individualised approach being at one end, the furthest extreme to counter that has only been participatory research. The introduction of Emancipatory research which allowed for the researched to also be researchers extended the scope, range and the shape that research can be undertaken with (Campbell and Oliver 1997). In the same way that the social model countered the dominance of the medical model, Emancipatory research was designed to provide an alternative to a more traditional research focus when the researcher held power over their subjects (Barnes 2003). Although this approach may be a practically problematic proposal, its influence to alter and offer an alternative method is undeniably important. By employing elements of Emancipatory research within the existing research framework, especially if social model underpinning is allowed to guide the development of the research would be a viable compromise, and a distinctly different approach to disability research. In much the same way as the social model has influenced societies attitude to disability so too should Emancipatory research be an influence to the way research is undertaken. Both ideological extremes of conducting research present flaws, but are both valuable and essential to enable a more balance approach to be adopted when conducting research.

Franklin, Kaliya (2011b). A stitch in time can sometimes cost you nine. Benefit Scrounging Scum. [online]. Posted April 19th 2011. Last accessed 13th May 2011 at: http://benefitscroungingscum.blogspot.com/2011/04/stitch-in-time-can-sometimes-cost-you.html
Franklin, Kaliya (2011a). The Queen and the Soldier. Benefit Scrounging Scum. [online]. Posted April 18th 2011. Last accessed 13th May 2011 at: http://benefitscroungingscum.blogspot.com/2011/04/queen-and-soldier.html
Franklin, Kaliya (2010b). To the Disabled People of Great Britain. Benefit Scrounging Scum. [online]. Posted October 24th 2010. Last accessed 13th May 2011 at: http://benefitscroungingscum.blogspot.com/2010/10/to-disabled-people-of-great-britain_24.html
Franklin, Kaliya (2010a). The government response to the petition to save DLA and AA. Benefit Scrounging Scum. [online]. Posted February 10th 2010. Last accessed 13th May 2011 at: http://benefitscroungingscum.blogspot.com/2010/02/last-week-government-published-their_10.html

NICE and Leukaemia drugs

by Terry Hickmott

www.leukaemianorthwales.org

In late 2004, and as is common with many cancers, I was diagnosed with
Chronic Myeloid Leukaemia totally out of the blue. In the past this
potentially fatal disease could only be treated with drugs like Interferon
following a bone marrow transplant. The latter is only available to people
within certain age groups and of course you need a marrow donor, either
through family members or through a match on the Anthony Nolan Register.


However, things have moved on, and in 2004 there was a drug called
Imatinib, which is available on the NHS despite its enormous cost. This
drug has been available for about 10 years now, and is very successful in
keeping the disease ‘at bay’, as opposed to curing it. It is the NHS's
first line of treatment for CML now.


Sadly a number of patients either fail to respond to Imatinib, or have a
‘sub-optimal’ response to it. For them, over the last five years or so,
two or three new drugs, working in a similar way to Imatinib, have been
developed, and are showing great promise for those patients for whom
Imatinib is not working as well as it might.


So we CML sufferers always had a fall-back. If things went wrong, there
could be a drug you could swap to. And so the prospects for life
expectancy for this potentially fatal illness are really, really good. So
hats off to modern medicine and the NHS!



Until last week, when a letter dropped through my letterbox, and that of
thousands of CML sufferers, telling us that these ‘fall-back’ drugs were
not to be approved by NICE if Imatinib failed to work. The safety net
suddenly disappeared.



The bottom line is this – if the first drug they put you on (eg Imatinib)
fails to work, you will not be permitted to swap to one of the successor
drugs, and instead you will instead be offered a combination of the ‘old
type’ chemo drugs such as Interferon, which without the bone marrow
transplant are pretty much useless.



Put another way, you go to your doctor with a headache and he prescribes
paracetamol, which doesn’t work. You go back to him, and he says he can’t
prescribe say Tramadol, because you’ve had your bite of the cherry and it
didn’t work. So go home and put up with it, or in our case, go away and
die.



I can only surmise that NICE are taking this stance because of the cost of
the medication. Its efficacy is not in question. This isn’t a drug that
extends life just for a few months – I’m over six years post-diagnosis,
and the disease, whilst not cured, is under control. So are many many
others.



NICE have launched a consultation which closes on 27th May 2011. We need
as many people as possible to sign an on-line petition. Leukaemia can
strike at any time in life – I was 47. Imatinib is a brilliant example of
how in the 21st century cancer need not be a death sentence.



Please take the time to sign the petition. One day you might need these
drugs and through government cuts you might not be able to get them!



http://www.gopetition.com/petitions/nice-i-don-t-think-so.html