The NRAS are working again with the government on the new green paper about our ability to work its called Improving Lives: The Work, Health and Disability Green Paper
Published: 31 Oct 2016
They are discussing our ability to work and what the government can do to get us into work. Here we go they are looking at doctors fit notes and how to get us back to work because presumably we just want to sit on our backsides.
NRAS go onto say that we would not be doing ourselves any favors just focusing on benefits. So like the last time when the NRAS told us they had agreed on our behalf some reductions in our benefits to prevent substantial cuts they seem to be consulting on getting people back to work. So they are asking for us to co-operate and take part in the research. Presumably our Patron Theresa May is going to see we are fairly treated.
So not only will we be fighting for our PIP we will now be forced to go for work assessments. The NRAS does not speak for me.
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shazbat
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Good to hear from you again but sorry to hear about your post. Do you think that Theresa May will make sure everyone will be treated fairly. I am not aware of what is happening regarding politics in the UK other than my sister said she likes Theresa May.
I had my third infusion last Wednesday and should be starting injections in a months time.
Everything is going well here, I am settled in my own place about 5-10 mins from where my son and his family live. I now have a cat called Sandie from the rescue centre, her owner had to move and was unable to take her with her. She is good company for me, she is 1 year and 9 months old very loving and wants lot of attention.
I hope you are keeping well and as pain free as possible with your injections my friend.
It makes my heart happy when people adopt animals from rescues. I read a story a while back about a woman who adopted a blind cat that had been at the shelter a while. She was worried that he would have trouble navigating, but he didn't as long as she didn't rearrange the house a lot. One night she woke up knowing that someone was in her room, but she couldn't tell where he was until her loving cat heard the man and attacked his face giving her time to get away. The cat was okay too. How awesome is that?? I'm happy you have Sandie...
Thank you, Sandie is lovely and gentle, curls up next to me at night whilst watching TV. I took her to be checked by the vet and he said she is healthy and has a lovely temperament. the person who had her first from a kitten had to move and was unable to take her with them and left her at the rescue centre. They had her declared something I couldn't do but the vet said that some vets are against it as it can cause arthritis, well that makes two of us, not that I have been declared but I do suffer badly with RD.
She is really good company and so happy I decided to adopt her.
I'm really pleased to hear you are doing so well my lovely friend. My drugs are still working, some flare ups but that's to be expected. That cat will have a good home you have a good heart. It's good to hear you so happy.
Did you see the reply from Ruth. I have been approved for the Tocizumab infusions and do not have to pay, which is great and now the nurses said at the clinic due to having transport difficulties I can change to injections at home as I did in the UK. I found out yesterday I have another dvt which is the 3rd one. I have to get the reports to my gp here on how they treated the dvt in the UK, it's a good job I brought the medical reports with me.
I am so happy that you are doing well on your injections apart from the occasional flare up. I have flare ups mostly due to the humidity in the summer. They can't believe the temperature here in November and we are supposed to have a bad winter to look forward to.
Hi Sharon , it was lovely to hear you are keeping well. I am hoping that I won't have as many flare ups once I start on the injections.I am expecting my first delivery today, they gave me a time frame of between 9am and 10.30am, fingers crossed .
My gp's office called me yesterday to say she wants to see me regarding the mammogram I had done twice but her next available appointment isn't until a week on Friday. I keep telling myself it can't be that bad or I would get to see her sooner. I also went to see an othamologist to have a test done and after waiting 2 hours he spent 5 mins test then told me I don't have any damage to my retina due to the diabetes but wants me to have tests done. I thought that was why I was there yesterday. 3 people were ready to leave as they had waited over 3 hours. I don't think I will be going back.
Just when you think everything is starting to get better something else crops up to knock you back.
One thing for sure is that the weather here is good, which helps also with RA I hope it stays that way as I start to give myself the injections on the 30th of this month, 4 weeks after my last infusion. I will be having them weekly like yourself, thanks for letting me know I will be better off having them weekly as you said by the 6 day you were starting to feel the RA inflammation kicking in again .
well my friend, I hope that the injections keep on working for both of us. Keep well, take care,
Susan xx
It would be nice to feel more support with this horrendous condition are the regulations that are in place for people in the support group to be pushed to one side reg 35 29 I myself have uncontrolled aggressive ra and at 62 thought I would have retired now I have never er been afraid of hard work but this would put me well and truly in the undertakes waiting room .
May, this government and now unfortunately NRAS doesn't speak for me either!! Disgraceful behaviour by all of the above, I'm still amazed how our "patron" can treat some of us suffering with RA with distain and how she is still patron is simply beyond me, she should go!!
Our Tory Prime Minister, Mrs May should be endorsing the charity instead she is part and parcel in making cuts to people's benefits who are too sick to work. Luckily I have my RA under control and have never been off sick and always worked but what this woman has done is sick and I genuinely feel for the folk it affects. Hope that helps.
I can't believe that Teresa May is still NRAS's patron, talk about a conflict of interest. even before she became Prime Minister she didn't help the disabled as she agreed to all the benefit cuts and the bedroom tax, even for people who have to use a bedroom for overnight carers. or to store medical supplies in it. How can NRAS think it's ok to have a patron who doesn't support the disabled?I'm aware that not all of people with RA are classed as disabled but I am.I've had RA since 1992 I was aged 24yrs then, I used to be a nurse til about 9yrs ago when I had a huge flare up and it's still not under control, I was also diagnosed with fibromyalgia Xrays showed that nearly every joint in my body was being attacked my back was under attack as well so the nhs retired me off due to ill Heath and said it was also for their insurance, for me and the patient's. I totally understood why but it didn't help me as I can't get my private pension from the nhs until my mid 60's I'm 52 now. I'm now unable to do Alot of things like walk very far, cook as I'm having problems gripping things, and lots of other things, then there's the fibromyalgia and the fatigue. I'm reliant on my benefits and I'm not able to work anymore, soon my esa is being cut by our patron's government by £30 a week not just mine but everyone on the income related esa, that's an awful lot of ill and disabled people who are on that esa,there are fights and petitions to stop this cut, we will have to wait and see what happens.
I am the same I was a National Officer for a Trade Union. My career covered 38 years, finally I had to retire on grounds of ill health as I used to travel the country. There were times I sat on moroway services for hours waiting for a flare up to subside. Theresa May is a disgrace, she has helped to engineer and voted for some of the most savage cuts to our benefits in living history. People are dying because of her party, thousands of people have lost motability vehicles. She has no humanity or compassion in her rich life. It's an embarrassment that she is the patron of the NRAS wouldn't you think they would say. " Hey hope you understand but it does not look good that your our patron especially now your the head of the government that proposes even more cute " even she can't be that thick that she would object.
I put something in their FB page saying similar. Then I get a message from Alisa, she wasn't happy about what I had said. She said that NRAS didn't agree with cuts, well they did actually and called them minor. These were the ones where the Govt were going to use aids & adaptations to take points off in PiP. NRAS do not get it at all, instead of sympathy & support with people who have this dreadful disease including me, I got facts & figures from her. Not impressed.
I think you have made your point very well shazbat. This is an example of paternalism, i.e. the charity is well-placed to influence government policy and, believing that it knows best, feels that it has the right to act on our behalf.
The problem is that while NRAS may achieve damage limitation in the form of an ever so slightly better deal, the involvement of NRAS and other respected charities serves to legitimize a patronising and punitive attitude towards disabled people. And also, how do we ever know that the final package is better than it would have been without this intervention? I think it is much more likely that initial proposals are designed to soften just a little over time to make it look as if charities, public opinion etc. do have an influence on government policy.
For my money, you're a better spokesperson than NRAS.
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Hi postle - You answered my earlier question - NRAS is not a government organization then... That makes it feel worse if they are on the side of the people that have this
Why the authorities act the way they do is to save money. However they only know what they are told about us and that is a dismal story of how we just have a bit of arthritis. I hear it all the time.. What do you have ? Oh yes I have that all the time in my shoulder! Derrrrr
I loved the new description of RD and you can now add seropositive to shut them up. All good for a laugh but the misinterpretation does us so much disservice and what's that assessment rubbish about. I don't know what will be wrong with me by Thursday and in between I may have a dislocated hip, a couple of crippling knee conditions an ankle that won't come right and as always the damn fingers and wrist which seems to be a mathematical constant. However by Thursday it may just be the constants. But they never ask about the pain levels or what happened 2 days ago do they. I had an assessment for my blue badge renewal a couple of years ago and fortunately the young woman assessing me has a father with RA and she understood. A rare person in this world. Many of us get about well but suffer pain doing it so "how far can you walk" doesn't mean a lot without the words "without pain" added, and 'yesterday my hip felt dislocated but today its only my jaw' leave them all baffled.
If you feel that your voice is not being heard, please fill the form on the website (someone gave a link earlier). YOU can influence what is being discussed too!
It is very important that as many voices as possible are heard to emphasise that, although it is right to help people who can work, there are also people who have had to come to the decision that their condition prevents them from doing paid employment.
This group should not be hounded with constant re-evaluations, offers to "get them back to work" etc. It is a difficult enough decision without being made to feel that you are a shirker all the time.
Why didn't NRAS confer with their members before embarking on this green paper with Conservatives ?? How can they represent members if they do not ?? Seems to me they have overstepped the mark on this and will infuriate many of its members. I used to be a paid member but left when I started receiving newsletters telling of members abseiling and climbing mountains etc. all of whom supposedly suffered RA. I knew then that NRAS leaders just simply did not 'get it'. They have let us down but what would you expect when they have Teresa May as Patron, NRAS should NEVER become embroiled in politics, it's wrong ....... this could spell the end for them, I suspect many paid members will refuse to pay their subscriptions and leave like I did.
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Hi Daisymay7 - it’s early days for the Green Paper. The writing of a Green Paper is not a public exercise and therefore not open to everyone. The Government use a Green Paper when they want to alter, amend or change a law. They invite stakeholders (NHS, Charities, MP’s, etc.) to advise on areas for discussion. These stakeholders do not influence the writing of a Green Paper in its entirety. Once the paper is published, there is then a consultation period. This is the time when stakeholders and The Government consult with the public, supporters, members. For this Green Paper, the consultation period will run until 17th February. However, anyone can download and read the 98-page document and use the links to send in comments. We cautiously welcome this Green Paper as an opportunity for us and our members to consult. We don’t fully understand the implications and are going over the paper with a fine toothed comb to explore the detail; this is why it’s important to get constructive views during this consultation period. As we have said on our FB posts and our website, over the next couple of months we shall be consulting with people in various ways to get their views so that we can feed back to the Government formally. Thanks, Sally @ NRAS
Hey shazbat - Sorry - this is a non-UK based question... Is the NRAS a government organization or like, just something you join? Thanks
Hi CaerylUSA it's a charity set up to supposedly assist people with RD. However it has now gone further, they are consulting with government on behalf of people with RD. We were never consulted on this we didn't sanction this. Recently they agreed that a series of cuts to our benefits were acceptable on the basis that the cuts could have been more substantial. When did they get a mandate from us to do that. They also have A Tory Prime Minister as our patron. A woman who voted for substantial cuts to benefits of disabled people. When this was raised we were all ignored which explains the mindset of these people. Then yesterday on my Facebook page a new statement popped up from NRAS telling us they were now consulting on fitness to work. We have disability legislation that employers should abide by. This is not about that it's about getting people off benefits and back into work presumably with all the assessments people are now having to endure just to keep their PIP payments. To ask us to get involved once they have started the consultations plus involving the organization with government initiatives is upside down. A movement should be leading on our needs not the governments needs and purse string. And I totally agree with the comment about the pictures being posted by the NRAS showing people with RD doing extreme sports. The only extreme sport I take part in is trying to fasten my bra in the mornings. It minimizes our disease and says to the world that you can do this with RD. It's wrong.
I remember in a magazine by the NRAS at least a couple of years ago asked for people to write in with their stories, I can't remember what about. But then it said, please, nothing too negative as we want to portray positive stories. Hang on, there's positives and certainly negatives about our disease! This disease put me in a wheelchair, it's real & disabling for some, but it seems NRAS don't want to know about severe RA/RD. Thats what I think anyway.
I am keen to hear about people with RD who are climbing mountains etc. People with RD are sometimes capable of significant physical achievements and the determination that requires is inspiring. 'Inspiring' is an over-used word in my view, but I mean it in the sense that their achievements give me pause for thought, make me constantly evaluate whether I am pushing myself enough physically, although in much more mundane ways!
However the achievements, if that's the word, that really knock my socks off are those of the many un-sung heroes: people with RD who have children, care for their grandchildren, continue working or, indeed, manage to survive on benefits when this support is required, often having to battle to get them in the first place. And yes, I can handle and am interested in reality of all varieties including hearing from people who are severely disabled and those who are not currently exactly leaping for joy, who may in fact be very depressed. We all know what the reality of this disease is and I too think that any organisation representing us should represent our experience in its entirety.
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Thanks for your comments Postle2. We try hard to illustrate the fluctuating and varied nature of this disease across all mediums including social media, newsletters, magazines, websites and our publications. I’m sure you can appreciate that it’s a difficult rope to walk as people are at very different stages in terms of their diagnosis and treatment, so continuously showing the 'bad' side may not be great for someone newly diagnosed, but equally we don’t always want to portray people climbing mountains and jumping out of planes but we DO want to celebrate their determination and recognise how difficult their challenge has been in comparison to others. In terms of un-sung heroes, we have a number of stories on our YouTube channel here if you want to view those youtube.com/user/NRASociety we also recently featured on Radio 4, the story of Amy and her struggles as a parent living with RA (you can listen via our website). We are also looking at a dedicated page on our website for next year around depression and anxiety. It’s all about balance and reflecting all sides and representing as many people as we can. But people will have different views and we need to be mindful of that. Many thanks, Sally @NRAS
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Thank you for responding. I know you do cover the everyday stories of the people I dubbed 'unsung heroes', I heard Amy's story on Radio 4 and of course was glad that it was given air time.
I am not usually too concerned with portrayal and image and all that, focusing on them can just go on & on and be a huge distraction. But I think when the balance tips into Pollyanna territory it makes you wonder about the more important values and priorities. So for example, as you are involved with Government policy that affects those of us disabled by RA, one might think that reaching out to your members who are in this category and highlighting the issues and challenges they face might be a bigger priority.
I do think this is a very good forum but for the first time I've been looking hard at the photo at the top of the page. So far I've not been able to find so much as a single walking stick or even a wrist brace, let alone a wheelchair! That lack of appliances just wouldn't happen with a such a large group of random RA sufferers, even allowing for some of those in the photo being friends and family.
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Thank you for your comments Postle, I wanted to respond to your post as a member of the Furndraising team at NRAS who was present when this photo was taken.
The photo you mentioned in your post was taken at our 'RAmble' in the summer of 2015 as part of RA Awareness week. It was designed to be an inclusive event and having attended I know that there were people present with varying levels of disease activity, including a wheelchair user. The photo was taken at the start of the day and we asked those who were happy to be in the photo to gather together.
It is always difficult to strike a balance between showing the challenges and impact of living with RA and JIA, and those who, with the right support and treatment, are able to live as active a life as possible. It is particularly difficult when you consider that some of the symptoms of these disease are not as obviously visible, such as chronic fatigue. Living with JIA myself I can fully sympathise with this, and I do believe NRAS does a good job of trying to represent the views of all of those with these diseases. Part of this is listening to feedback and I do hope that if you have any concerns, you will contact us.
I seriously can't believe that they said nothing too negative(actually,I'm writing this while shaking my head because I know full well it's something that would get said!!). I too was in a wheelchair at the ripe old age of 41 - and it was heartbreaking to go from a completely Independant woman that not only drove 120 miles round trip every day into work,but also used the gym 6/7 days a week,along with having a social life. This suddenly stopped after a series of viruses (according to the gp,as my bloods kept coming back normal) and what's turned out to be over three years of trying to get just my PsA under control. It's definitely wrong to show nothing but the positive side being people doing extreme sports when my main goal/extreme sport every day is to get out of bed comfortably,and to be able to bath,or god forbid,wash my own hair!! This disease does nothing positive in my opinion.... there may be a few stories of people managing to live fulfilling lives,but I wonder how long it took them to get to that stage in the first place? And how aggressive their symptoms were/are? I had to give up all exercise(incl my aqua classes) on the advice of all the medical teams around me as my joints were so swollen for so long that I didn't even recognise myself from the waist down!! I was slowly beginning to see the light at the end of the tunnel for the first time in 3 yrs last month,when all of a sudden someone decided to rear-end my car..... luckily no one was injured,or so we thought,but ever since that day,the tiny piece of independence I could finally start to see has disappeared,along with my sanity,so now I'm back on the rollercoaster of more Physio,more painkillers,and worse of all,back on the anti depressants I fought so hard to get off in the first place. It just seems so unfair to yet again knock the disabled as being lazy,instead of looking at the true problems of the country(I won't go into).
Sorry,rant over,but just felt I needed to echo what you were saying.
I think you are right, in trying to dispel doom and gloom for people withbRD they are swinging the pendulum the other way. People who can't do theses things and I can't are suffering for it. I finished work before I was due to retire thanks to the encouragement of my husband and supported by him. He had been nagging to leave work years before. I am now retired and can stay out of all this assessment business, thank God.
I am also very disappointed to see this charity (NRAS) , let alone ANY charity involved with disabling illness and diseases, getting involved with this ill conceived, ideologically politically driven, assessment of "fitness" which is designed to permit the government to evade paying benefits and I use the word evade deliberately.
Far too many people go into these assessments with a view of pushing their limits as if it was a job interview, it is not and I certainly paid the price, in my body, for doing so at my first assessment, which was also "embellished" by the assessor, I am being very kind with the use of embellished, there is a four letter word that doesn't mean truth.
The assessments are run by computing companies, using a computer assessment program and have nothing to do with your health, the program was written to be only concerned with positive aspects even when these occur 1% of the time but they then form 100% of the assessment.
I would advise anyone attending these assessments to ALWAYS have a witness, request recording, although they will make it very, very difficult to do so as the GMO of the DWP insists on police style equipment and ATOS et al will make it impossible to record using these rules, we all have that kit in our attics don't we?.
When Mike Penning (then Minister for the Disabled) appeared at the Work and Pensions committee on 11th December 2013 in answer to question 75, he stated;
"Of course, some people are requesting to tape their appointment—and they are entitled to do so—on recording equipment." I doubt he was made aware that he was being economical with the truth at the time by the actions of his staff, in this case the General Medical Officer, I wonder just what he is frightened of?.
I would also advise that no one does anything that would cause them pain, we aren't masochists, we are entitled to refuse to do anything we are not normally capable of, this isn't a job interview, this is a benefit removal interview. You may also be asked to or can you lift an empty box, I fail to see what that has to do with work, unless the government intend creating the department of empty box movers, that question has only one purpose to prove you are fit for work, good luck trying to find an employer that wants an empty box mover
Good afternoon Shazbat and thank you for your comments on our Health Unlocked Community platform. Being involved in the Government’s advisory group on work and health is a great opportunity for NRAS to get in front of the right people and ensure that people living with RA/JIA and long term fluctuating conditions are represented. As it’s a consultation document and open until 17th February, it really is early days and we hope to be able to have further discussions with our NRAS members to continue those debates so that we are in a better position to respond with feedback formally. We don’t have all the answers and whilst we support the fact that that the Government is consulting on support for disabled people and people with long term conditions we have yet to explore the full implications and what this means for our members. We shall keep you updated on any forums, discussions or meetings we will be having in relation to this topic shortly. Best wishes,
Hello sally perhaps it would have been more honest had you posted the private message you have just sent me. I will respond to health unlocked as I was not aware that you could block me from this site as you stated in your private message for the reasons you gave.
And your reasoning for blocking me would be because I would deter people from using the NRAS services not for breaking any site rules. We have a democratic right to our opinion.
Perfectly right to raise this important subject. I am appalled that you have been threatened with being blocked from the forum. This IS a matter that concerns all disabled people, and should be openly discussed. NRAS itself posted it on this forum, they must be prepared to be criticised as well as praised M
Maybe it would be better for you to post the message Sally sent to you, so me and other members are getting the clearer picture of what is going on, surely HU can not block you for your opinion, I always thought this is what the group is all about, now I am having second thoughts,
It's disgusting that you've been threatened with being blocked! Sharon, you would not deter people from using NRAS services, where is their evidence for this? It's the fact that we are standing up to NRAS for their stance & close relationship with the government. They don't want that exposed.
Please let us know how you get on Sharon? You have my support x
Dear HU community,
given the wave of posts and comments we have seen on the site relating to The Green Paper on Work, Health and Disability, I thought I would try and respond to some of your concerns. The writing of a Green Paper is not a public exercise and therefore not open to everyone. The Government use a Green Paper when they want to alter, amend, change or bring about a new law. They invite stakeholders (NHS, expert bodies, charities, MP’s etc) to advise on areas of discussion. These stakeholders do not influence the writing of the Green Paper in its entirety. Once the paper is published, there is then a consultation period. This is where the stakeholders and Government consult with the public, supporters, members. For this Green paper, the consultation period will run until 17th February. During this time, as we have said on our FB posts and website, we shall be consulting with people in various ways to get their views so that we can feedback to the Government formally.
This platform is provided by HealthUnlocked and NRAS to enable people with RA and inflammatory arthritis and other health concerns to provide support to each other regarding their health issues. We want the platform to continue to be a safe, informative and supportive environment for people to support each other.
We rarely post anything on HU that could be perceived as potentially controversial or sensitive in their nature such as Green Papers or White Papers as we have separate forums in which we facilitate dialogue for this. Additionally, often as we have seen, these types of issues can take up time and space on the forum and can discourage people from using the forum when they need it most. We are happy to address any concerns or views you have in relation to the Green Paper by writing to campaigns@nras.org.uk our Policy and Public Affairs Officer is collating all information during the consultation period which runs until 17th February. Many thanks,
I have taken the opportunity to read the green paper and the research (commissioned by DWP), which is being used to inform the proposals outlined in the paper.
For what it's worth, these are some of the conclusions I've reached:
Decisions about the future welfare of all disabled people are taken at parliament. It is therefore, a real asset to have an organisation who represents our particular needs as a voice to support us in that decision making.
Proposals in the green paper include further assessment of those deemed 'unfit for work' in order to establish whether changes in the work environment can enable them to either remain in or re-enter the work force.
The basis for this proposal lies with research which indicates that people in work experience improved health and well-being compared to those out of work and on benefits.
On the face of it, any support offered to enable those who need help to continue in their work has got to be a good thing if requested by the employee. I'm sure that many of us would like to feel that we can continue to make a positive contribution to the world if only we had the means to do so.
There are, however, some more worrying aspects here which need to be addressed and I welcome the opportunity to express an opinion on those, given that I am the expert of my own condition.
The research "Is work good for your health and well-being" does indeed conclude that it can be. BUT It also points out that generalisations should not be made, as individual differences need to be taken into account. The nature of the job is also an indicator of whether employment has a positive effect.
Basically, if you have a "good job" it could benefit you but if you have a bad job, it won't. (A bit of a no brainer really). So what is a good job? One that makes you more financially secure than you would be otherwise? one that gives you work satisfaction? one that you can be proud of?
These are the aspects of the research which I am fearful will become overlooked in the rush to reassess our work ability. Statements so far, on this paper, have implied that reassessment will be mandatory not voluntary thus removing all choice from us as to what we feel is better for our own health and well-being.
Based on what has happened with the introduction of PiP I'm afraid that I can envisage being told that I'm capable of working as a button sorter, provided I have an adapted chair to sit on and that, furthermore, it would be an improvement to my health to do so and that the government are acting in my best interest!!! Rubbish...No one in their right minds would employ me because there are so many more hidden aspects to this disease preventing me from working that no amount of adaptations can fix. I know that because I live in my own body.
But Brilliant! In one stroke, that's someone off the unfit for work register and back into the job seeking register. Oooh how those benefits scrounged by us will drop. (DWP rubs hands with glee)........But it will all be for our own good of course.
I, personally have no problem at all with charities being invited to contribute in this level of decision making. I think it is a good thing and that we need it.
What I am concerned about though, is the possible conflict of interest in having a patron who stands to benefit (career wise) from pushing forward legislation which is potentially damaging to us.
Is that patron still able to separate her position with NRAS from the stance of her political paryt which she also represents?
Equally, is NRAS able to separate its loyalty to its patron from the needs of the people it represents?
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Government letters returning back to work? 
Urgent help required! Is your DAS score <5.1 and your RA not well controlled?
Members day NRAS / maybe a good chance to meet some off our virtual friends?
Really concerned about my ability to work
