Theresa May : It's with utter disgust that I realized... - NRAS

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Theresa May

shazbat profile image
79 Replies

It's with utter disgust that I realized Theresa May is the Patron for the NRAS. This women who supposedly represents us voted with the government for every round of cuts which would impact the disabled. Including the cuts announced in the recent budget to PIP, which the government have just done a U turn on. When it was raised with the NRAS about the fact that she was our patron and did the NRAS have any intention of requesting that she steps down as we do not believe she is fit to be a patron as many other charities have done. They have issued a letter which can be seen on the NRAS Facebook page. The letter lets every sufferer of Arthritis down. They even state in the letter that the " minor " changes resulting from the requirement for AIDS was reasonable. Minor changes in other words they accept that you could loose money as reasonable. Please go onto the Facebook page and read this letter. I and many other members are disgusted by the NRAS stance. I have seen people on this excellent site terrified at the prospect of reapplying for their disability benefits through the PIP process, a system that the NRAS seem to be saying is required to make sure benefits are right. It's sad to say they sound more like the Tory party than the Tories are. This post is not party political, it's about telling the organization that represents us that we are the members and we expect to have an input on policy. I also fully expect them to inform us of any consultations with government about our benefits. Not to make those decisions on our behalf.

Shazbat.

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shazbat profile image
shazbat
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79 Replies

Thank you for a very strong and to the point input to which I fully agree and feel disappointed as a member of nras that they have not taken a stronger stand

Philip profile image
Philip

Not a good time, this woman MR May should be told to go and to resign now, as you all know people are dying and being put out on the street with no help from anyone, this is a disgrace and needs to be addressed asap. I believe that NRAS isn't the only charity to have these evil MPs as Patrons and they have been asked to resign from THIER posts, Even Motorbility has IDS Ian dunked smith along with the big evil leader David Cameron.

I think this needs to be sorted out as soon as possible please.

Philip,

if this isn't liked by those up high may I request you ban me from NRAS.

Philip profile image
Philip

This is the latest news from the front line.

speye.files.wordpress.com/2...

Philip profile image
Philip in reply to Philip

Please read and make of it as you will. Well worth a read.

speye.files.wordpress.com/2...

in reply to Philip

kittysjones.wordpress.com/2... you could find this interesting if I got the link ok

smithfield profile image
smithfield

I believe the use of the word is totally misleading for people struggling with ill health and disability trying to maintain their independence with the use of aids.

It reflects a totally misunderstanding of living with a disability and the daily battle we face to carry out mundane tasks.

I would expect Theresa May as Patron to of NRSA to have had more insight and opposed the cuts to PIP.

It may be minor in the amount it would of saved the treasury ,

if it had gone ahead but to people living with disability it would of been major.

flow4 profile image
flow4

The NRAS response is truly shocking. They basically say "You're all wrong, we're right. We agree with the PIP cuts and they're 'only minor'. Tough luck". Teresa May should not be patron, and whoever wrote this letter needs a reality check!

You can see their letter and read the Facebook comments here: m.facebook.com/story.php?st...

smithfield profile image
smithfield in reply to flow4

Thanks for posting the link but I am getting web page unavailable. Interesting.

flow4 profile image
flow4 in reply to smithfield

I thought they might have taken the post down, but it's still there. Try this link:

m.facebook.com/story.php?st...

And this is their letter: nras.org.uk/data/files/News...

flow4 profile image
flow4 in reply to flow4

Or try finding it by going to their main page and scrolling down: facebook.com/nationalrheuma...

Spooky profile image
Spooky in reply to flow4

Hi flow4, thanks for that, yes the letter has disappeared but their facebook page speaks volumes!! Utterly appalling!!

hatshepsut profile image
hatshepsut

I totally agree with your post Shazbat. I am appalled by the attitude of NRAS. They have to understand that they are answerable to their membership, and should be supporting us. How could they fail to understand the pain, stress and hardship that their members have been enduring because of these cuts? How could they not ask Theresa May to stand down. They should ask their members for their opinion on this contentious issue .

I have worked voluntarily for this charity for 5 years, but this is not what I signed up for. I need to consider my future actions. Mavis x

shazbat profile image
shazbat

I agree they are making policy decisions which is not their remit as a charity, they are there to consult and make representations. But the letter and the contents seem to be a defense of the Tory party policies. And to make comments like minor when referring to the benefits disabled members receive is indefensible. They have no right to condone financial penalties for their members.

I also dealt with government ministers for many years without forgetting who I was representing. When other Tories who voted for cuts had the good grace to step down why is this organization defending this minister.

Sharon

sunshineju profile image
sunshineju in reply to shazbat

Totally agree with you. As a charity representing the disabled, our interests health and welfare should be supported and endorsed even protected in this instance. You cannot support a bill that is hell bent on grabbing money back from the sick and disabled then have the audacity to front a charity that is here to champion the cause on our behalf? Listen to your members NRAS. Remove this so called patron, it's deeply wounding to be so let down in this manner.

sylvi profile image
sylvi

I signed the petition against these cuts and would you believe i have had an answer. It said that those already receiving the pip will not be affected. If i can copy it i wil post it on here.xxxx

cathie profile image
cathie

We could have a petition she isn't a proper person for this role I agree

cathie profile image
cathie in reply to cathie

I mean petition for her to step down

VivRaine profile image
VivRaine

Totally agree Shazbat, I have read the letter on Facebook and commented.

This site is provided through NRAS although other charities use it to, so not supplied by them exclusively. This site is great, as are NRAS books so plus points there for them. I do wonder what else they do for the people they represent though. I would expect them to be campaigning strongly on our behalf about these issues and others that affect people with RA, not roll over and agree with harmful government proposals.

As one reader on the FB site said, aids are indicative of disability, it's not necessarily about them being bought once and not needed to be bought again (the argument for the cuts I believe) but more about the whole person: if they need those aids then they need extra support.

Other charities have ditched their MP 'patrons' for exactly this reason and can't really understand why NRAS isn't doing the same, the reasons given were wooly and weak. I wonder what the real reason is.

Gentle hugs people x

Someonesmother profile image
Someonesmother

I don't live in the UK but have been following things closely as our Gov't in Oz is going down this path too. How can people who vote to cut services etc to the most vulnerable people in the community, stand up and pretend that they care about them by being a patron????

What frightened me the most was the decision in the UK to stop biologics for anyone who is sero negative or does not have severe disease. If the same thing happens in Oz I am in great trouble as I am sero negative. I had this discussion with my rheumy recently and they are all of the opinion the same thing will happen here. I said well I will not be able to work any more as I won;t be able to get out of bed. I cannot understand why a gov't would rather have people on benefits rather than working and contributing to the system. I am gobsmacked by all this stupidity.

in reply to Someonesmother

I have sent you a message, Virge

calamityjane1971 profile image
calamityjane1971

I've commented on the FB page regarding this. I await your response NRAS to the many members who are appalled by your statement. I also wish to cancel my membership, how do I do this?

I am disgusted with you NRAS!!! You are not representing me and I think you need to listen to the people who use this site, as we are the ones fighting to keep what little benefit we do get. I am sick and tired of people with Disabilities being targeted as we are an easy target. We don't have the strength to fight and the government know this. The rich are getting richer and the poorer poorer, Mr Cameron you should be ashamed of yourself and I don't know how you sleep at night. Pull your finger out NRAS now and support us all.

sandybrown profile image
sandybrown

some people do have them!

gradyjackjacob profile image
gradyjackjacob

I totally agree with everything shazbat said.

RandomUser profile image
RandomUser

On sites like this it's generally the case that only the angry make a noise, so I'm just posting to say that (like many others) I see NRAS as a helpful resource, not a political campaign organisation, and I think it's good that a senior politician (of any party) who deals daily with real, tough problems of finance and competing priorities is a patron.

popsmith1874 profile image
popsmith1874 in reply to RandomUser

She didn't look too bothered when the budget speech was getting read out in fact she was laughing like the rest off these leeches who are still getting an 11per cent pay rise she should resign now end off

Jayne18 profile image
Jayne18

Having read the facebook letter and responses im annoyed and frustrated. I always think carefully about replying to posts, whilst we are all here together as equals, I never would want to offend or intentionally upset anyone with a glib or flippant remark.

Unlike the NRAS whose letter, which systematically undermines the entire premises of why the charity and forum were set up to achieve, upsets almost everyone.

The people at NRAS who made a decision to write that letter on how we live our lives and the quality of life we struggle to maintain, have no right to judge any of us or the support we need.

They clearly have no compassion about their own members' circumstances or situations.

There are no words which describe how let down and frightened some people were about the cuts to their necessary benefit, and to not respond in that hour of need is and was unforgiveable.

Theresa May should leave and seek a chair elsewhere, as their talent for spinning poo into silk could well be used elsewhere but, for sure, it's not required at a charity for disabled people.

In the words of Justin Bieber -my mumma don't like you and she likes everyone.

stbernhard profile image
stbernhard

I don't have enough detailed knowledge of the whole subject, so can't directly comment on this particular conflict. It just seems a shame that social media has the power to create huge waves of anger and so little power to point out the good that is happening in this world. Without NRAS a great many people would be a hell of a lot worse off! NRAS has been a source of help, support and advice for thousands. None of us are perfect, please don't forget that.

Alexann profile image
Alexann

Why are politics bought onto this site,.

People are so quick to comment and not properly understand what's being said.

People who genuinely need help will always get help. I think as with most proposed changes it only ever effects new claims, not existing ones.

I don't think this site should go on so much about politics after all it's meant to be a Health forum first and foremost, politics is a very personal subject for most people

I don't think this is the place to keep on airing our own political preference and some people are quite nasty when referring to politicians, this should really be about helping with health issues and if advice is given hopefully it should be correct and not scaremongering or at least get facts right.

mirren profile image
mirren in reply to Alexann

Shameful disregard for new claimants and wilful ignorance if you do not accept the absolute destitution of the weak and vulnerable of many people due to horrific cuts already endured.

shazbat profile image
shazbat

Alexann this is not just a political issue it's an NRAS issue and with all due respect your comment that those who need help will get help is not the case, many disabled people have lost a great deal of money and support. I fully understand what that letter says as do many other people, you appear to be saying you have your benefits so it's ok if new claimants get less. And as for the Minor changes because of the use of Aids. There will be people on this site who have already lost benefits. We have every right to question the NRAS on the policies they are pursuing on our behalf. Just because I have my benefit does not mean I should not care about other people with the same disease losing theirs. You have the right to your opinion but politics govern every bit of our treatment and support, from the drugs we can have to the financial support we get to help us to survive. This particular politician voted on every cut to disabled people. So I do believe it should be on here. I do believe we should question politicians and I do believe that the Charity representing us consults on issues before agreeing with them. That's called democracy not nastiness.

Shazbat

sunshineju profile image
sunshineju in reply to shazbat

Absolutely, well said!

hatshepsut profile image
hatshepsut

Well said Shazbat. Amazing that NRAS can't see it. I feel so angry and let down. Mavis x

Martinilady profile image
Martinilady

you are right Shazbat - I agree with you 100% - Politics come into every part of our life, they determine every aspect of our lives, schools, housing, benefits, jobs etc etc and we do not have to take it lying down, we have a right (as human beings) to speak up if we feel that we are not being treated well. What the hell do we pay our taxes for !

We cannot escaped Politics and Politians,

Clare-NRAS profile image
Clare-NRASPartnerNRAS

We acknowledge some of you feel very strongly about this issue; for many this is a very personal issue.

NRAS, founded in 2001, has 15 years experience of successfully influencing government and doing so as a critical friend of the government of the day whatever shade that may be. We support people with RA/JIA in meeting their MP/MSP/AM, we provide e-actions tools on the NRAS website and when appropriate we join in cross-sector lobbying activities with other charities.

Our positions are informed by dialogue with members and supporters. NRAS staff regularly visit our groups across the country and get a feel for the mood on the ground. Our Chief Executive has lived with RA for over 30 years, she and others with RA/JIA are involved at every level in the charity including on the board of trustees.

We would however like to sincerely apologise for the use of the word ‘minor’. In our statement, we were referring to the changes announced on 11th March (a week before the budget) to the PIP assessment and the way aids and appliances were considered. We used the word minor as a comparative between this suggested incremental reform to uphold the rigour of the assessment process and the separately announced plan to save £4bn on PIP per year by 2020. We know that the impact of any change on the individual is in no way minor and our use of the word as a comparative on reflection was inappropriate. We were never supportive of the £4bn of PIP cuts and welcomed the swift u-turn on this, similarly we actively opposed the cuts to ESA within the Welfare & Work Reform Bill as detailed in our last statement.

We are saddened that some of our RA family who have always joined in reasoned debate with us have taken such a confrontational approach to their charity on this occasion. The NRAS office is a small team of just 20 staff, we value the relationship we have with our members enormously and all strive to make life better for people the charity represents.

We are actively seeking a meeting with the new Secretary of State for Work and Pensions. We will publicise this meeting in advance and take into account the feeling of our members and supporters in our dialogue with him and his department on an ongoing basis.

To clarify, the role of patron is a non-political one and Theresa May has been NRAS patron since day one supporting the charity as a national organisation based locally within her constituency of Maidenhead. Respecting her position as a cabinet minister, our relationship with Theresa has been an exclusively civic one for several years. We feel it would be inappropriate to sever ties with someone who has given 15 years of support and has the potential to support the charity even more as it grows.

Matilda7 profile image
Matilda7 in reply to Clare-NRAS

I welcome this further explanation and especially the retraction of the word 'minor'. 

However I think there are several issues to be unpicked here. This government likes to portray disabled people as either paralympian heroes or benefit scroungers – with nothing in between. And of course if the vast majority of the disabled are benefit scroungers then the Government can claim that it's fine to cut their benefits, whilst allowing a few people with 'genuine ‘disabilities’ to receive benefits. However we all know that this is simply untrue. The proportion of benefit scroungers is tiny in comparison to the large number of disabled people.

Secondly the government think that the wealthy need to be made more wealthy, have bigger salaries etc in order to make them work effectively. However the opposite psychology is seen to be appropriate for the poor. They need to be made poorer in order to be forced to work harder. This is obviously invidious and needs to be challenged in the strongest terms.

What is disappointing about the NRAS decision not to go along with other disability organisations on standing up to these draconian reforms is that it will make it easier for the government to wield the axe.

 

sandybrown profile image
sandybrown in reply to Clare-NRAS

Any contribution from TM to the charity fund?

shazbat profile image
shazbat

Hi Clare I have just responded to this letter on FB. But to clarify why are the NRAS saying in the letter we are being confrontational. Like many people on here I had a life a great career, I went from that to feeling like someone beat me up while I was sleeping, extreme fatigue, fear when they found tumors on my lungs, the side effects of the medication we take just to survive. I had dreams to retire after working all my life and traveling. Last year while going abroad my on board luggage was full of drugs and injections just so I can at least have a holiday. My husband married a happy energetic woman and ended up with someone who does not even know if they can walk In the mornings. The only benefit I have ever claimed is DLA, I still pay for my prescriptions because we don't qualify. So when I see a cabinet minister sat there cheering her colleagues on when announcing cuts to people with disabilities, while cheering a tax break to the higher paid in our Society, yes I get angry, I worked and paid a lot of tax for myself and other disabled people to receive financial help. It's totally inappropriate for anyone to be a patron of any charity when they have voted for cuts for disabled people. And there is always a case for compromise, however when the people asking and voting for the cuts accepted an 11.2% pay increase then cheered while they received another break through tax cuts. Then the NRAS in my opinion should be saying. Sorry but your presence as a patron is detrimental to our members. That's not anger or confrontation that's logic. 

Shazbat

sunshineju profile image
sunshineju in reply to shazbat

Again well said! 

hatshepsut profile image
hatshepsut

Well said Shazbat....I have responded in full on the other thread.

calamityjane1971 profile image
calamityjane1971

I do hope that NRAS are not thinking, Easter is coming up, it'll all die down soon and carry on as they were before. I will continue to voice my opinion. I want to hear from the Chief Executive and the board about how this can be resolved. It does need resolving and for us to be taken seriously. All I'm seeing is at the moment, nothing from NRAS on what will happen with regard to Theresa May. So, the ball is in your court NRAS, what are you going to do next? 

shazbat profile image
shazbat

I totally agree, this will not go away, this charity is made up of members, those members want the NRAS to ask Theresa May to step down. She does not represent me or based on the support for this post and the post on the NRAS Facebook page many other members. What is the NRAS going to do. We would like an answer not letters that are so badly worded they are inflaming the situation. 

Shazbat

pinksugarmouse profile image
pinksugarmouse in reply to shazbat

shazbat like you I really don't want to let NRAS brush this aside. This is really serious. The organisation is there to speak up for us and represent us and by keeping Theresa May on as Patron this undermines everything they stand for.

The Government has made light of the realities of living every day with a disability, made us out to be liars and scroungers and whilst on one hand cutting benefits ( example ESA work-related activity group) it also cuts the support for disabled people to get into and stay in paid work. Jobcentres no longer employer disability advisers, it's pot luck who you speak to.

Keeping Theresa May as Patron simply because she has been for 15yrs is not a valid reason. Every action she has taken has been to undermine disabled people and make life more difficult. Which shows that in 15yrs of being patron she has learned nothing about people with RA. On a similar theme maybe the dentist who shot Cecil the Lion should be the Patron of PETA.

shazbat profile image
shazbat

It appears that the NRAS think the best way to deal with this is to ignore us. So I suggest to show we are not going away people should cancel their membership, cut off the money they receive to exist. You never know Theresa May might give them a grant to survive but don't think so. She needs the money for tax cuts for the rich. 

Shazbat

calamityjane1971 profile image
calamityjane1971

Does anyone know how to cancel your membership please? I can't continue to be a member of NRAS because of their attitude to our concerns. Did you see the Private eye article on the recent NRAS responses to the members? 

in reply to calamityjane1971

Yes someone just sent it to me I gave them a ring and they cancelled my continuation of membership then I was sent a form asking why I had ended it 

shazbat profile image
shazbat

Hi junechurch do you have the link for the article please.

Shazbat

in reply to shazbat

It's on the nrsa Facebook page I have put it on my page its with saddnes as there was no link to put a photo on

flow4 profile image
flow4 in reply to

Could you post a link to the Facebook post please, June. I've looked there but can't find it...

in reply to flow4

m.facebook.com/photo.php?fb...

flow4 profile image
flow4 in reply to

I've found your post with the photo, ignore me!

healthunlocked.com/nras/pos... 

in reply to flow4

It's me lam usless at sending things its connected to there statement about benefit reforms I can't get it to copy

flow4 profile image
flow4 in reply to

No you're not! That's great, we can see it now. Thanks :) 

pinksugarmouse profile image
pinksugarmouse

I have just emailed NRAS. I am not a member but after contact with you guys and enjoying being on this site I was about five minuets from joining up. I have emailed and told them why I can no longer do this. This was my email:

Dear NRAS,

Despite living on a tight income I am able to support a small number of charities and good causes. Having contact with members of NRAS I was about to joint the charity and become a member myself.

It was with shock and sadness that I found out that NRAS did not be join up with other charities and write to Justin Tomlinson to speak up on behalf of it’s members and supporters and their families and friends. Another arthritis charity ARC responded with deep concern to the PIP cuts when they were proposed. It appears that NRAS referred to the changes as being ‘minor.’

Furthermore whilst other disability charities have rightly asked MP’s supporting the damning cuts to disability benefits to stand down as patrons NRAS is making excuses to keep Theresa May.

Members have requested that you ask her to stand down and you have refused. I am not a member and it is looking unlikely that I ever will be. My money would be better spent and my membership more appreciated with another charity. I urge you to listen to your members whilst you still have some to listen to.

Kind Regards.

shazbat profile image
shazbat

Fantastic letter well done. But they seem to be just ignoring us like we don't matter. This charity does not exist except for the members and the people they are representing. 

Perhaps we should ask her ourselves to step down because unfortunately the NRAS are recognized as our representatives I intend to tell her they are not representing me while she is the patron.

Shazbat

pinksugarmouse profile image
pinksugarmouse

Hi guys. Well Ms Bosworth sent me a reply.

Ms. E. Bradley

st March, 2016

31

Dear Ms. Bradley

Thank you very much for your email and taking the time to write to us.

I’m very sorry that you have decided not to join NRAS and if I may, I would like to explain some of

the issues with which you are concerned.

Being a ‘critical friend’ to any government, irrespective of party, is essential for all charities who wish

to engage proactively with government officials, Ministers and MPs. In our experience, I think you

would find that any charity with a Policy and Public Affairs team as we have, would agree this is the

best way in which you will be able to get your views heard and get change for those with RA, as

charities who take a deliberately confrontational and aggressive stance on any issue, will find that

doors are closed not only on that issue but all future issues, and the very people you need to engage

with, will not engage with you. We’ve found that it’s the only pragmatic and sensible way to ensure

that you are able to influence where you want and need to.

We opposed the cut to ESA very strongly and if you scroll down far enough on our Facebook or the

new section on our website, you will find the following entry on the 13th January, 2016

She then added this;

National Rheumatoid Arthritis Society (NRAS)

January 13 ·

A number of people are taking part in the 'mass lobby' of MPs today at the Parliament to express concerns over

the recent Welfare Reform Bill! Katy is one of them.

The Welfare Bill plans to cut on benefits like ESA (Employment and Support Allowance) that a lot of people

with RA and other disabilities depend on.

Katy is with her local MP Paul Schully (Sutton and Cheam) today to express her concern and talk about how the

bill could affect her, if it's put into action.

We arranged for 3 of our members to take part in this event and meet their MPs at the mass lobby

to raise awareness of the problems such a proposed cut would cause people with RA.

We are opposed to any cuts to the PIP and have always made that clear and are very glad that the

government reversed its decision on the proposed cuts by 2020.

Theresa May became a patron of NRAS soon after I set the charity up as she was our local MP at the

time and very supportive of our work. When she became Home Secretary many years later, we

adapted our relationship and the only contact has been for her to attend our annual carol concert (a

fundraising event) and give out awards at our biennial Health Care Champions Awards. As a charity

we are apolitical. We have to work with all parties and we have supporters in the various UK

parliaments from all the major parties as do all charities of any size.

We work incredibly hard as an organisation on behalf of all those with RA and JIA and much of the

work we have done and continue to do in regard to welfare reform is not particularly visible to our

supporters – we need to make it more so. I commend you for taking the trouble to write to us in a

reasonable way, but many of the comments in social media about the above issues have been taken

out of context and been conflated with matters unrelated to the budget announcements. Many

have misunderstood our position.

I have always done what I believe to be right and fair in business and in my dealings with other

people and treated others with respect and without judgement if their views happen to differ from

my own. Theresa May has given us a huge amount of (non-partisan) support over many years which

we have valued. Neither me, my senior management team or the Chair of our Board of Trustees

believe that because she had no choice as a cabinet minister but to vote to support the budget

proposals in the House is reason to ‘fire’ her after 15 years of support. The vitriol in some of the

social media posts has been unnecessarily unpleasant and unwarranted and we cannot run NRAS on

the basis of ‘mob rule’.

We have written to Theresa outlining our concerns about PIP, ESA and other issues and asked her if

she can facilitate a meeting with Stephen Crabb, the new Secretary of State for Work and Pensions

so we can address these issues which concern us and our members. We await her reply and will be

following up on this. Given the recent terror atrocities and threats to UK security, we don’t

anticipate that we will get an immediate reply but will update our members when we do.

I appreciate that you may be disappointed that I am not going to agree to ask TM to stand down as a

patron, but I hope I have been able to demonstrate, even in a small way, that we do care, we do

work very hard for people with RA and JIA and will continue to do so.

pinksugarmouse profile image
pinksugarmouse

I then sent this reply;

Dear Ms Bosworth,

I appreciate the need for charities to be a ‘critical friend’ to Government but it appears that NRSA by their actions have chosen to be much more friend and far less critical. You have also criticised other charities for taking what you refer to as an ‘aggressive stand’ to Government Policy. Perhaps you could identify which of the charities which have spoken out whom you deem to have been unreasonably ‘confrontational.’

Far from closing doors, the charities who have spoken out and taken a tough stance have not only put their members and supporters first, they have sent a strong message to the Government that Disabled people are not an easy target. This tactic has been hugely successful and we can thank all these brave organisations and spokespeople for the Government scrapping the proposed changes to PIP.

I am glad to see that NRAS spoke out against the cuts to ESA which unfortunately are still set to go ahead. Your decision to stand up with your members on the issue of ESA makes it all the more confusing that you chose to stand against them on PIP.

Whilst NRSA’s policy on disability cuts could be argued to be confusing and misleading, those of Theresa May MP could not be clearer. May has voted in favour of every welfare cut since the Government came to power in 2010. She also voted in favour of tax breaks and inheritance tax cuts which will benefit the very wealthy in our country. This Government argues that we have so little money we have to make drastic changes detrimentally effecting social care, public services and Junior Doctors (all of whom have a big impact for those with RA). In the meantime, the county can still afford to support the very richest, who unlike everyone else have seen some big improvements in their finances since the banking crisis.

You are confident that the NRAS has received non-partisan support from May, but her very partisan actions and attitude towards disabled people have caused great distress and financial hardship. It is reasonable to assume from her actions that she either has no understanding of the lives of people with rheumatoid arthritis despite her 15years as a patron or she does not care. Perhaps both.

Your supporters and members are quite understandably distressed and disappointed. They feel NRAS has betrayed them, abused their trust. You have mistaken their offer to give you another chance and find a new suitable patron who will work with and not against them as ‘mob rule.’ This is very sad.

It is clear that NRAS have chosen to be ‘critical’ to its members and ‘friend’ to one of the facilitators of their hardship. This would make anyone angry.

I do not agree with abusive language or threatening behaviour but I like will add my voice to many others and speak against your decisions to pretend to speak for those of us with RA when your actions demonstrate the opposite.

Kind regards

Emma Bradley (advocate, proud mum and life-long JIA suffer)

in reply to pinksugarmouse

Thank you for speaking out a great voice if reason 

Matilda7 profile image
Matilda7 in reply to pinksugarmouse

Very well put. Thank you Emma for explaining clearly and simply why we feel so let down. 

I am very pleased that you received a prompt reply and hope that your further well-reasoned response will help NRAS to understand that their current stand is simply unacceptable to many of their members, including me, and that they will feel minded to amend it without further delay.

flow4 profile image
flow4 in reply to pinksugarmouse

This is a fantastic letter! Well done, Emma :)

shazbat profile image
shazbat

Hi Emma

That's an excellent reply. It shows the nature of the people within the NRAS that they believe descent and disagreement is mob rule. They cannot remove themselves from the political sector as they are campaigning, so to say Theresa May is there in a non political role is a major contradiction. I can only assume she is a personal friend of someone senior. I will not give my money or patronage to an organization that puts a patron before the members. Their agreement to the PIP cuts because they believed they were minor shows how out of touch they are. People on this site were terrified at the prospect of losing even a penny of those benefits. The NRAS have unfortunately become elitist and out of touch. 

Regards

Sharon ( one of the mob )

pinksugarmouse profile image
pinksugarmouse in reply to shazbat

The use of the word 'minor' also misses the fact that PIP is a passported benefit. Perhaps they forgot that those loosing their PIP would automatically loose other benefits such as carers allowance as well. A charity like NRAS should know this. Otherwise what is the point of them?

She has cancelled out any good work by a betrayed trust in support for the disabled  it was a vote against them and don't forget the bedroom tax 

pinksugarmouse profile image
pinksugarmouse

Guys I am a bit worried that if I get all 'pro-active' then I might get kicked off this site. That shouldn't happen. I will stay polite. There is no point in being aggressive but NRAS seem to be viewing any conflict as a personal attack. If I just 'disappear' from this site with no trace, remember it wasn't my choice. :)

pinksugarmouse profile image
pinksugarmouse

Hiya all again. I have been busy today (not with housework) and have also sent this email to Theresa May;

Dear Ms May,

Whilst I am not a Maidenhead constituent, the charity NRAS have used their locality as a justification for your continuing patronage of the charity. As locality came into their decision I made the decision to contact you using this address. If this was incorrect, I would be grateful if the person who reads this first sends it to the correct place.

As a lifelong sufferer of Juvenile Idiopathic Rheumatoid Arthritis I have had struggles to achieve basic things which other non-disabled people take for granted; sitting up, walking, going to school, working, cooking, shopping, bathing, looking after my daughter. Born to young, inexperienced working class parents disability benefits were a lifeline. As was the treatment and support received through the NHS and various charities. As a child the council were able to build a ground floor bedroom and walk-in shower for me. Most councils would not have the funds to do this now.

The NRAS is a relatively new charity in comparison to some of it’s counterparts, but it is as far as I am aware the only UK charity which offers advice purely for those with Rheumatoid Arthritis. I cannot see how your conscience allows you to remain a patron of the charity whilst consistently voting for cuts which reduce the quality of life its members.

A number of disability charities have spoken out against the cuts resulting in several Conservative MP’s being rightly asked or told to stand down. It is essential that a charity supports its members and takes their concerns seriously. Despite repeated requests from members and supporters, NRAS have done the opposite and spoken in favour of you. This has caused enormous distress. Members now feel betrayed. Many have ended their membership and many more have already said that when the time comes to renew theirs they will not. It is unlikely that NRAS will recover from their poor judgement and they will only have themselves to blame.

The NRAS do not speak for the vast majority of people living with Rheumatoid Arthritis and Juvenile Arthritis in the UK, nor do they speak for our family members or friends. We condemn the attitude the Government has taken towards disabled people, portraying us as ‘scroungers’ and suggesting that if only we lived on less we might make a better effort. They appear to blame us for our own disabilities and ignore the un-favourable treatment we experience in workplace. The thinking is that If we live in greater poverty, perhaps we can magically overcome these barriers. My attempt to re-enter the workplace has been extremely difficult, cuts mean that jobcentres no longer have specialist disability advisers. If I want to try and go back to work I am expected to do it alone. How is this helpful?

I will not ask you stop making life more difficult for disabled people whilst giving tax breaks to the very wealthy. I will simply ask that you stand down as patron of NRAS because at the moment this might be the only thing that can save them.

Yours faithfully

Ms Emma Bradley (volunteer advocate, mum and life long sufferer of JIA)

flow4 profile image
flow4 in reply to pinksugarmouse

Another stonkingly good letter!

You should be proud of yourself for making a stand for all disabled people thank you for this input 

shazbat profile image
shazbat

Absolutely excellent I will have mine ready tomorrow.

Sharon 

pinksugarmouse profile image
pinksugarmouse

Thank you for your positive feedback. I only hope she will do the decent thing but as I pointed out to Sharon, Theresa May has recently been found to have wrongly deported around 48,000 students. She has a history of doing the wrong thing to the detrement of a lot of people. She is now going to be deeply unpopular with the public and maybe an even greater liability for the NRAS. I can only think that someone who works there must be a family member or close friend.

Matilda7 profile image
Matilda7

What has happened to Mirren's post? I can't find it.

mirren profile image
mirren

I think i have had posts deleted again. Sorry folks. How about a 2 day strike alongside and to support the junior doctors who at least are trying? We coukd set ourselves up a picket line on facebook and refuse to post here for 48 hours :)

Matilda7 profile image
Matilda7 in reply to mirren

What did you say that was worthy of deletion?

mirren profile image
mirren

I posted a meme about TM describing her expenses and the fact she hasnt bothered to turn up to a single welfare reform debate since 2011. I politely asked that NRAS ask her to resign as patron.

I know some people find this uncomfortable, as the NRAS team are so good and supportive, but they have to listen to their membership and accept they have made a mistake here. All the lost trust would be instantly won back and confidence restored. 

Its hard to back down when you have stuck your neck so far out, but even if you still believe you are right it will boil down to what matters most. Your members strong wishes i should hope.  Run a poll on that.

Matilda7 profile image
Matilda7

Thank you

shazbat profile image
shazbat

I agree run a poll, it's only right the members should decide who our patron is. Unfortunately the responses from the NRAS have been surprising in as much that they seem to support some of the cuts even referring to them as minor, on the basis that some cuts is better than full scale cuts. The problem with that view is the disabled people on the receiving end of those smaller cuts could be faced with substantial hardship. The difference could have impacted carers allowance, mobility allowance, etc. I am amazed at what seems to be a total lack of understanding for the consequences. 

in reply to shazbat

It's not a problem if you have plenty of brass I have written to my MP asking for an explanation as to why patrons are voting against issues that some of them represent 

pinksugarmouse profile image
pinksugarmouse

It isn't just NRAS who are trying to justify keeping MP's who voted for cuts as patrons. My local MP Karen Lumley is the patron of a local charity called Special Olympics Redditch which provides sports training and competitions for people with intellectual disabilities. It says in my local advertiser that their site has been the victim of cyber bullying from local councillors as well as members of the public. I am sceptical as to whether it is cyber bullying which they are experiencing or people expressing their perfectly legitimate anger and dismay that the charity have not asked her to step down and are using the same argument as NRAS that politics doesn't come into it.

Obviously politics comes into it. Neither Ms May nor Ms Lumley would have been asked to be patrons if they were not MP's. It will come as no surprise that Ms Lumley did not comment on the issue.

My local MP would attend the opening of an envelope if she thought it would further her career, but given her actions it is highly questionable as to whether her experience as a Patron of this charity has given her any insight into the lives of disabled people. Or perhaps it has but she simply does not care and will vote in line with Tory policy in an attempt to work her way up the ladder. It is reasonable to also consider that both Theresa May and Karen Lumley along with many right wing MP's view welfare spending as an easy target for cuts as they have little or no understanding of whom the money is used by and the consequences for those who are victims of the cuts.

The charity have also helpfully provided a dictionary definition of the role of a patron as; A person who supports with money, gifts, efforts or endorsement an artist, writer, museum, cause, charity, institution, special event or the like.

Perhaps they, along with NRAS should consider the definition of the word liability; a person whose presence is likely to put one at a disadvantage.

Synonyms; hindrance, encumbrance, burden, handicap, nuisance, inconvenience, obstacle, impediment, drawback, drag, disadvantage, weakness, shortcoming, problem, weak-spot, millstone around ones neck, stumbling block, cross to bear............

These patrons are both a liability for the charities they represent and the people they are supposed to represent, but despite everything their soon to be ex-members and ex-supporters they still don't get it. I imagine those working at the charity sticking their fingers in their ears singing "la la la la, can't hear you la la la" in the hope that the problems will all go away.

 

in reply to pinksugarmouse

Excellent input 

Things could be changing soon!

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