Just what I have been saying....

[Juliachoo]

After my posts this popped up on Facebook... I feel vindicated to read it...

[Philip]

Is there a link so that I can read the document, please.

[Juliachoo in reply to Philip]

Sorry no but someone said on FB that it was letters in the Daily Mail. That’s all there is 😚

[Philip in reply to Juliachoo]

Ok, thank you for getting back to me fast.

Philip

[Kai-- in reply to Philip]

pressreader.com/uk/daily-ma...

[Kai--]

.

Article text (from source link: pressreader.com/uk/daily-ma... ) for your convenience Philip, Juliachoo 🙏 🍀 🌺 🌞 :

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Why are arthritis sufferers like me being left in agony?

Daily Mail, 6 Nov 2017

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Caption to photo: Fighting the pain: Kieron Tapsell and his 19-month-old son, Jake

I’VE been suffering from rheumatoid arthritis for 13 years, since I was 23. After waking in agony at 3.30am last week, I’d had enough.

First, because of government cutbacks, my disability living allowance/personal independence payment was removed in February, as it was decided I no longer fulfilled the official criteria as having a debilitating condition.

I wasn’t classed as having a disease that affected me that much, even though it is a lifelong condition without a cure.

Then, nine weeks ago, I was suddenly told the drug treatment I have taken for the past six years was being withdrawn because of a loss of government funding.

Injecting Enbrel once a week has kept me mobile, so I could enjoy life with my partner and two young children and stay in work as a driver. It stops my body from attacking itself so my joints don’t become swollen, stiff, difficult to move and very painful.

I don’t understand how a drug that has been working so well for so many can lose government funding without a replacement.

My consultant mentions a new drug called Benepali, but cannot say if, or when, I will get it.

Recently, the pain has become unbearable. Ibuprofen and cocodamol hardly touch the sides. A cortisone injection was supposed to give me relief for three months; the effects lasted barely two weeks.

I am struggling to work and to cuddle my children, which breaks my heart. I need answers. I don’t usually moan about my condition, but enough is enough. KIERON TAPSELL,

Northfleet, Kent.

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[LyndaKenny]

I’ve no words!

[Jewels94]

I’m struggling to understand how his enbrel was withdrawn and not replaced straight away with benepali. I was under the impression that people were just being switched over. Have I got that wrong.

[helixhelix in reply to Jewels94]

Me too...not convinced that the story is entirely accurate. His PiP might have been stopped because he was doing so well that he was no longer seen to need it as he talks about the drugs keeping him stay mobile, working as a driver and enjoying life.... etc etc. So doesn't sound as if he needs help with daily living or mobility?

And as many on here have said there is normally a direct switch from enbrel to benepali - so maybe just a glitch (which also seems to be common!) rather than a complete withdrawal.

[nomoreheels in reply to helixhelix]

My thoughts exactly h on both points.

[Eiram50 in reply to helixhelix]

I agree

[Juliachoo]

Thank you Kai

[AgedCrone]

As far as I can make out .....when doctors are issued with "the rules" re which drugs they can prescribe they don't seem to be written in a way that is universally understood.....so each area/practice/doctor seems to interpret them differently!

RD affects every body very differently. For example I have never been prescribed more than one Dmard at a time, & that has worked for me, but many doctors prescribe multipleDmards concurrently for this condition, & both approaches seem to work. So when one drug in the mix is removed it can be devasting, ,but "the rules" seem to encapsulate each individual drug...so confusion reigns!

My understanding may be well off track as I'm not a doctor, but my Rheumatologist agrees it is not a straight forward process.

Get your Rheumy on side if you think you have wrongly had a drug withdrawn, after all he is the only one to get it back for you if at all possible.

[Nettac]

Sadly, this does not surprise. I've been left in agony for ages. Have felt suicidal at times.

I'm an extremely independent person. Always been a great walker. At the moment can't do much.

My PIP was cut in half too. Stinks.

[Neonkittie17 in reply to Nettac]

So sorry Nettac. I understand. I was delayed getting in for my Rituximab in 2015 and resulted in me spiralling downwards and being on no end of pain relief and oral morphine and then oral steroids. I have never felt so much pain and despair. It will improve for you but we shouldn't have to wait in agony. I was an athlete and a fell walker and was reduced to hobbling a few steps from bed to bathroom as my daily exercise for many months. As I say .. It got better and I hope yours does soon. Hang in there. x

[Nettac]

It appears that some folks get good care, whilst others are left floundering.

I can tell you at the time my PIP was cut in half I could hardly get out of a chair. Don't for one moment think that because it hasn't happened to you, that the problem does not exist. That's almost as insulting as the lack of treatment and compassion folks have experienced from professionals!

[helixhelix in reply to Nettac]

I'm not saying the problem doesn't exist because I'm sure it does! Just that this particular case sounds a bit odd....

[Nettac in reply to helixhelix]

Comment wasn't aimed specifically at you, just generally.

[Juliachoo]

I do think their is a lot of truth in what you say Nettac. I also think the “ postcode lottery”. Is a lot to do with it. All I can say is I’m so grateful I don’t have to go out to work anymore like this poor fellow as how the hell they manage it when in pain I don’t know. Some of you working warriors deserve a medal🥇🥇

[sappy]

It is an unusual story, in my experience accuracy from the Mail isn’t considered important if it weakens the storyline!

I was on enbrel and was changed to Benepali as my dose ran out. There was no gap. Maybe the consultant has to reapply for the drug funding or something coz it’s a technical change and that hasn’t happened.

I didn’t realise PIP etc was even an option if u work full time? I have just reduced my hours at work because I am struggling now so much more with my AS because the anti tnf doesn’t seem to be working as well and the Sulfra seems to do nothing other than add to the fatigue. Plus my peripheral joints are giving me so much pain and discomfort this all makes the fatigue even worse at the moment.

I have always assumed I just have to keep going to be able to sustain work by doing very little else when I am off which isn’t a lot of fun for my partner much of the time until our mortgage is paid off.

[Eiram50 in reply to sappy]

Hi sappy

I work full time - actually, that’s not accurate - I’m employed full time, but inevitably due to flares and a lot of surgery, have had gaps in this but I receive pip, both elements and higher rate.

Given your circumstances and the level of pain, the impact of thus on your everyday living, it may be worth you applying?

Best of luck going forward

Marie

[sappy in reply to Eiram50]

Hi Marie

thanks for your reply,

I will look into it, I had hoped once anti tnf was started I would return to my former fit and healthy self. I did for about 18 months but more recently everything seems to have declined a lot.

How does claiming PIP fit in with the good times as it were. When I am doing ok i am not symptom free but I wouldn’t imagine I would qualify for anything but times like now when I am flaring up massively and off work i struggle with so many things. To be able to have a bit of extra help at those times would make everything so much more manageable and reduce the stress of it all long term.

Thanks again

Lisa

[Eiram50 in reply to sappy]

Hi

I think it’s about recognising the nature of this disease, importantly, when at its worse. Pip application is based on “ your worst days”, so to speak? The very nature of RD is the flares etc- sometimes it’s not “quite” so bad, painful nor as debilitating but very rarely do we get to enjoy the quality of life, the freedom of movement, that we did before diagnosis ?

Also, if your circumstances changed significantly, you have an obligation to let them know? There is guidance on this available.

Marie

[BoneyC in reply to sappy]

look on Benefit & Work website, its something like, how are you for 51% of the time?

[keeta in reply to Eiram50]

I was also told by cab that you couldn.t claim anything if you work as it proves you can carry on without help .

[Eiram50 in reply to keeta]

Nope, absolute nonsense- at least as far as PIP is concerned? Pip is understood as an awards ad opposed to a benefit ?

Marie

[keeta in reply to Eiram50]

Oh maybe its cos i.m 67.and still working .but its so hard at times

[nomoreheels in reply to keeta]

PIP isn't means tested so you can work & still apply/be in receipt of it but unfortunately due to age you wouldn't be eligible keeta as it's only available to those aged 16 to 64. Possibly this is what CAB meant? However, you could maybe consider applying for Attendance Allowance? Have a read, see if it could help ageuk.org.uk/information-ad...

[keeta in reply to nomoreheels]

Thank you don.t like askin for anything really but have knocked my working week down to a day a week because its getting too hard and i.m too tired.

Don.t want to beg fir anything so keeo putting it off.i thunk we have to roll over to much .

But i.ll ask again .thank you love x

[nomoreheels in reply to keeta]

I know, but if it will help you in any way, even reducing your council tax bill then it's worth exploring maybe? Try not to think of it as a hand out but help now you really need it. x

[keeta in reply to nomoreheels]

Thank you x

[Juliachoo in reply to nomoreheels]

Yes it’s definately up to 64years old. Such a shame as this blinking government is expecting most women now to work until at least 67 years & anyone with health issues like RA are finding it increasingly difficult like Keeta to manage it xx

[nomoreheels in reply to Juliachoo]

Indeed.

[Eiram50 in reply to keeta]

Yes, Your age definitely is a factor re PIP. I think you need to be under 60 to apply?

Marie

[keeta in reply to Eiram50]

Thank you x

[Birthdaygirl]

I really hope this young man finds NRAS and this site so that he can get some support.

[Neonkittie17 in reply to Birthdaygirl]

Hope he does too. Sounds like he could do with some friends who understand and can advise on some things that may help and where to find them.