Morning everyone, hope you all as well as you can be.
So yesterday I was reading an article on my phone, it was in one of the newspapers and it was about a woman who had been diagnosed with MS in 2005 and was claiming PIP, apparently she told the benefit’s people that she was really bad, struggled to move about and very rarely left her home, but her FB page told a different story, she was actually taking part in a lot of running events and posting her pictures online, so the DWP found out and have ordered her to repay 20K. Now I think this is disgusting, I wouldn’t mind being able to walk on my own, never mind run and is this why some on here are struggling to get the benefits they need and are entitled too.
So is this just me, I’ll be interested to hear what you think, in the meantime have the best day you can.
Jean x
I agree with you but folks now live on Facebook and MS is a very complex condition & alot of people struggle with benefits & accessing them - it’s a tough one to process as PIP is how we are on our worse days -
Hi @Redman and I agree with you, MS is a very complex condition, no 2 days are the same, in fact it can all change is heart beat, but when I read it I felt this woman had set herself up for a fall, by making out she couldn’t never do certain things, silly really to say these things on a claims form and then do the opposite and publicise it on FB 
But recently I’ve been reading on here about how folk are scared of the process of claiming benefits, this happens and it doesn’t help them, I just feel very sad about it.
Take care and enjoy your day.
Jean
Definitely Jean-never ceases to amaze me what people put on Facebook
Same here @ Redman, to be honest I don’t do any social media, well I do whatsapp to keep in contact with family and friends, is that social media ?
Hi Jean, I know that I often have to remind myself that not all people with MS are nice, ‘decent’ people. I know I automatically think and feel that anyone with MS is a good, kind person but in reality we are actually a cross section of society and it is highly likely that if I met some of them I would completely (strongly ?) disagree with their general views and outlooks on life. So, I guess that our ‘community’ includes a few people who always have and always will milk the system for everything they can get. It’s a shame but there you go and they don’t represent society in general
Hi Jean,
That’s so disgusting, and makes it harder for everyone else trying to get some help!
I recently lost my job (self employed support worker) due to the effects of my ms. Was rough being let go when you’re dealing with spasticity, Trigeminal neuralgia with bladder issues and psoriasis. Hope you’re keeping well Jean x
Hi @ animali, yes I agree and it does make it harder for people and that’s what made me so cross, because living with this condition is hard enough and we have to jump through enough hoops to get the benefits we need to get by. I’m really sorry you lost your job, through no fault of your own and I really hope you’re getting the support and help you may need.
Take good care of yourself and keep smiling.
Jean x
Thank you Jean, it’s been a tough time. I had my phone call today and have now got to complete the paperwork for how my illness effects me.
I’m hoping things will eventually settle down, I’ve got physio tomorrow then neuro urology next week as bladder issues getting worse as well as bowel issues! MS just keeps on giving me more things to deal with!
You too Jean xx
Saw the same article:
Benefit cheat mum must repay £22k after being caught out by innocuous Facebook post
She applied in 2020 during lockdown, when there were no face-to-face assessments. It’s right that she should not have received payment and clearly she knowingly deceived the assessors. MS or not, evidently she was not suffering impairment in the way she claimed.
Much of the blame must be borne by her designated medical practitioners who signed off on her claims made on the form. One wonders how many more people have deceived the authorities.
MS will always be a difficult disease to assess for benefits due to its intermittent nature for RR- types. And therefore contentious. Assessment is not by the label but by the way one’s life is impacted by the disease. Easier though for Progressive (worsening) sufferers.
The thing is not all RRMS is intermittent! I was diagnosed in December 2023, I’ve experienced a further 5 relapses and have never fully recovered from any of them. To the extent of losing my self employed job whilst dealing with spasticity in 3 limbs, psoriasis and a relapse of Trigeminal neuralgia which has cause total numbness of my lips and part of my mouth the other part just burns all the time with no saliva. I’m afraid I disagree with your statement, in the space of 2 years I’ve gone from working full time to being unable to work due to the effects of ms. Made worse by the fact most of the medication makes me tachycardic or puts me into urine retention. I wish it was the way you describe it, but for me personally it’s been devastating it’s taking so much from me and every day is a constant struggle.
MS sure is a tough one to police when it comes to benefits. I had ON in both eyes, couldn’t hardly see my hands in front of me, needed help to do most things. That was my worst days. If I’d claimed at that time, the information I’d have supplied then would simply not have applied 18 months later, by which time I was back in full time employment, driving, and my vision had returned to almost normal. At that point any benefits I would have been receiving, in my opinion, would’ve been tantamount to fraud.
Thanks for your reply @animali and yes everyone’s MS is different, I have a lady come to me once a month to do back massage to ease the stiffness and spasticity and she herself has MS, can still hold down a full time job, in her words " I have only numbness in one hand a fatigue", then someone like you with RRMS has a hell of lot more to contend with. Good luck with the bowel and bladder, I have to do a bowel irrigation every day and have 5 monthly botox injections into my bladder and have to self catheter and that’s just the tip of the iceberg, LOL, or not.
Jean x
Thanks for your reply @GCCK , on the points about this article I agree with you and yes the professionals should take some of the blame, maybe she was pulling the wool over their eyes too, although I’d like to think they would see right through that. Don’t know about were you are in the country, but I haven’t seen a neuro face to face or telephone wise in a few years, likewise my appointment with my nurse is always a telephone one, although if I wanted to see her face to face I could, but getting out for me now is very difficult.
Have a good day and good luck on your journey with this awful condition.
Jean
Thank you for your reply RetrovirusUK, I hope you’re doing ok at the moment, losing your sight for however long isn’t nice, that was my first symptom so I know, take care of yourself and have a good day.
Jean
Thank you Jean, any help is gratefully received to sort out the bladder and bowel issues. The self catheterising has helped, but recently I’ve been experiencing more issues. I wish I could still work, as it’s a lonely old world without it.
Take care Jean x
Hi @animali , Yes it’s hard having to give up work, I finished aged just 47yrs, enjoyed my job, but the travelling to get there and the work itself (office based) I just couldn’t cope with it, besides my MS, I’m nrSPMS was progressing pretty quickly, so it was time to focus on my well being.
Take care of yourself and have the best day you can.
Jean x
Hi @GCCK , I’ve just read that article in full, how come she got so much in PIP, I get full in both parts and get nowhere near that amount ?
Jean
Thank you Jean, it’s not nice what you’ve gone through! It’s a shame but realistically it was probably making me worse as I really struggle with fatigue as well as the other issues. Tbh I was only diagnosed in December 2023, but my life is so different now. I hope you too have a lovely day. I’m off for neuro physio today, to see if they’re going to refer to the neurologist for advice as my spasticity is getting worse and I can’t take more baclofen otherwise it puts me into urine retention for hours which is really painful.
Take care Jean X
Oh @animali , don’t get me started on fatigue Good luck today, maybe Sativex could be one for you, but that’s down to the neuro and you, take care,
Jean x