On October 31st 2016 the government published, 'Improving Lives: The Work, Health and Disability Green Paper' (gov.uk/government/consultat.... The aim of this consultation paper is "to understand why disabled people and people with health conditions might be unable to get a job or keep one, and to recognise the wide range of conditions and circumstances they face".
LUPUS UK has written a response to this consultation and submitted it on behalf of people affected by lupus. You can read our response, in full, at the link below. If you wish to respond as an individual you may do so until 17th February 2017, at consultations.dh.gov.uk/wor....
Thanks, Thanks and thanks again. I'm so glad Lupus UK has spent the time and effort on preparing a response.
I fully support the things you have raised in the Lupus UK response. I particularly like your stance that
Work is not always an appropriate outcome for everyone. People with complex conditions who are unlikely to be able to return to work should be supported to reach self-defined goals.
The assessment of the ability to work would best take place in the healthcare system, rather than the Department for Work and Pensions, as this setting will help to lessen concern and anxiety around removal of benefits."
and that "Those people with lupus who have been declared by their healthcare team as being unable to ever return to work, with no scope for improvement should be exempt from reassessments for disability benefits".
As changes in these areas could make a real diffence to me personally.
Lets hope the government truly do want positive change and do want to "help". I am a bit sceptical that they are just looking for ways to achieve the governments aspiration that "1 million fewer people would be on incapacity benefits (Employment and Support Allowance, Incapacity Benefit and Severe Disablement Allowance) by 2015." ...and because it hasn't worked they're trying to force it to work.
Exploring new ideas at the same time as looking to make welfare benefit budget cuts does not “sit well” with me. However I do welcome that they want to engage in looking at improving services for those with Musculo-skeletal (MSK) conditions. I also welcome that they are looking into wether certain people should not be reassessed
I myself have been trying to work my way through the green paper document, but it is so long and has so many ideas that I have almost "given up". I have to really pace myself and can only engage in dealing with looking at this as I feel well enough. I have limitations on how long I can sit at a computer for even when I'm on a "good day" and I also get mental health issues specifically around the fact that I can't work so it's taken me the last 2-3 months trying to address how I would like to input to this debate, with balancing my general health.
I haven't had chance to fully respond to all the ideas the green paper seems to want to explore, but I have been working on preparing a personal response so that I feel I have "had my say". Allthough I feel I personally haven't had enough time to respond, I will at least send an e-mail response to "have my say". I hope it's OK I have mentioned working with Lupus UK and supporting the things you do to help people like me, in my personal response. I have also started to look at the online consulattion questions, but as the consultation ends tomorrow I'm not sure I can fully answer all their questions
Once again thank you Paul_Howard and the Lupus UK team. Yet again I feel to have real support from the charity
Thank you. It's certainly not a straightforward paper to respond to and we couldn't have done it without the help of ARMA (The Arthritis and Musculoskeletal Alliance) who we are members of.
The questions in the consultation cover a wide range of topics, looking for views for various different parts of society, so you do not need to respond to them all. Answering the questions aimed more at individuals should be the focus, and these have been separated on the online form. We hope that our consultation response can help a few people formulate ideas for their own individual responses, which is why we tried to publish it early.
Thankyou Paul and all contributors. One other feeling from a personal view; when I tried multiple times to return to nursing, my employers were always concerns about liability. Where they would be sued if I didn't have the right screen cover, I lifted something, I fainted etc I offered to sign I disclaimer taking responsibility at one point, as could manage my condition. HR can be a powerful beast unless you need it to be.
Thank you Paul for your response to the governments green paper. Its good to know there is someone fighting our corner.
I hope the government is serious about and that this is not just a paper exercise. so far their stance has been very punitive and callous.
I like the idea that health professionals should be involved in assessing those with lupus and not the DWP who have no idea about the intricacies of this disease and the impact on sufferers and their ability to manage life and work. This would be welcomed. It would avoid a lot of the stress associated with assessments that often trigger flares in sufferers.
Additionally if the threat of having benefits taken away was removed it would give sufferers more confidence to try work in the knowledge that if their condition became worse they could stop work and return to benefit until which time they could try work again if possible. This would take away a lot of the pressure and anxiety around finances.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
COVID-19 and shielding: Experiences of UK patients with lupus and related diseases - Research Paper - NOW PUBLISHED
Radio interview on lupus, the diagnostic difficulties and challenges of the pandemic - listen to Coco and Dr Chris!
