Moving forward with RA & Benefits : Well.. i am based... - NRAS

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Moving forward with RA & Benefits

Well.. i am based in Hertfordshire and got signed off until 31 Oct.

I ve resigned from my job as theres no way I could ever sustain it now - moreover it comes to an end in January.

In the meantime i wake up with pain in my skull, elbows, collarbones and knees mainly - at around 2am each day. On/off pain and discomfort most of the day.

My doc has prescribed Naproxen twice a day and am waiting on my NHS referral. The referral seems to have gone missing so have wasted some six weeks so far.

Does anyone have experience of how long it takes to get their first appointment- am in Hertfordshire.

Also, i m wondering if i could claim PIP?

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How depressing for you, i’m Not Herefordshire so don’t know sorry but got emergency referral from Hants GP in 3 weeks (was after 6 months of varying symptoms tho’). Yes you can claim PIP, nras do great free booklet that talks you through process, it’s not means tested. Good luck hope things improve soon x

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Benefits & Work website is the best when it comes to disability benefits - PIP and/or ESA.

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Hi I am based in Hertfordshire and had symptoms 12 years ago now. I have an excellent GP and I was still working as a nurse when I became ill so knew the system, which all helps. My GP did an urgent referral back then and I was seen and assessed and then started on sulfasalazine within a 3 month period (September GP, October/nov bloods etc and then December treatment started). I did push at the initial appointment to get my ultrasound scan done urgently, as they wanted this as a diagnostic marker then, as my CRP was elevated but my ESR wasn't, so they were questioning the level of inflammation!! I was struggling to walk and move hands but what do I know?? I did know however as I had several patients on my books with RA at the time so I knew what I had already. Early treatment used actively is important so you need to get assertive with your GP and make then chase this on your behalf. Once seen you will need lots of bloods done to check for your diagnosis and possibly ultrasound as well as x-rays, all before treatment can start, so time is of the essence. I am under East and North Herts Trust ,so attend the Lister hospital in Stevenage. Not sure what happens in West Herts.

Hope that helps and good luck.

Are you on something for your stomach while on naproxen? If not also ask your GP about that too as you may need to be started on lansoprazole to protect this?

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Hi

I ve found that my GP has referred me to a MSK Triage Service in the Lister Hospital.

I wish theyd referred me to the Early Arthritis Clinic as this is a big delaying factor.

I've complained about the fact that am now waiting 6 weeks with nothing to show for it.

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Check by calling the DWP, they'll go through it with you when you request your claim form, but I think part of the qualification for PIP is that you've to have had your condition for 3 months & expect it to have it for a further 9 months. Now, this would mean you'd qualify to apply except when awarding PIP they rely heavily on written medical evidence, your word or even the face to face isn't always enough unfortunately. It should be but it may mean needing to have your diagnosis confirmed by a Rheumatologist before your application would be accepted or you would be awarded points which. I'm not sure that your GP's evidence would apply, he can't officially diagnose you, only your Rheumy can I'm afraid, though you could of course ask your GP to provide written evidence for you. Normally I'd say apply as soon as you can because it all takes time but in your case as you've not received a diagnosis (yet) you may be jumping the gun & go through the whole (insert preferred swear word!) process for the sake of waiting until you've had your diagnostic appointment & able to supply written proof from a Specialist. Sorry if this isn't what you were wanting to hear.

I'm sorry you've had some wasted weeks. Because of this I'd ask your GP to refer you as an urgent case, or added to the cancellation list, hopefully either way you've the chance of being seen earlier. Also if the naproxen is helping but isn't enough to help the pain ask if you can have some form of pain relief too, along with a PPI (omeprazole or similar) to protect your tum if you've not been prescribed one. I was prescribed both an NSAID & pain relief when my GP referred me for diagnosis. She did ask me to stop them a few days before the appointment though so the pain & inflammation would have returned for diagnosis.

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Hi nomoreheels the pip is more on your mobility and care needs and not diagnosis although it would help dwp do tend to not mention diagnosis etc only on your care needs and mobility etc you just phone for forms to fill in and as you said the 3 months and 9 months is usually only thing they go on .it is straight forward really

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I agree, it's made up of the two components but to increase your chances of being awarded anything it's necessary to support a claim for your health conditions or disabilities with medical evidence, the more that can be provided the better. As you're probably aware until the system is improved we're relying on an assessor & desision maker who may not understand fully how RD affects a claimant. Supporting medical info therefore is crucial, I have experience of that. At my initial PIP I went from a few points short of receiving the standard Mobility component to enhanced at my PIP review early this year because I was able to provide written evidence that I was unable to at my initial PIP assessment where I only received enhanced Daily Living. The Decision Maker only has the assessors report & medical evidence to form the decision. So, the medical evidence that would be needed in TheBoys instance would be the diagnostic letter or report sent to the GP, this is the reason diagnosis is mentioned as this is the "relevant evidence" which would be likely to be accepted. If they have them relevant evidence could be from anyone who treats, so as it says in the PIP info booklet that may be hospital doctor, specialist nurse, community psychiatric nurse, occupational therapist, physiotherapist, social worker, support worker or counsellor. Usually if you see any of those mentioned you tend to be referred because of something that could apply to either component or a diagnosis of something.

Hope this explains.

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Yeh I totally agree with you and good points the more letters evidence the better .I was just meaning you can still apply without diagnosis thats all .you make very good points. That's vood that you got so.e rates

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It's all about throwing as much as you can at them to increase the evidence you need either or both components really isn't it?! I'm helping someone with a claim at the mo & the info we're providing from medical professionals relating to needs is literally an inch thick! Just pleased they weren't charged for, it would have been a small fortune!

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That's good there was no charge.yeh the more the merrier. I wish all departments gave patients a copy as well .my reumatologist always justs send to gp.yet you do see diff departments always give 2 copies

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Hi the boys you have good tips above .you can do the pip self test also to give you an idea you do not give name .Google pip self test and benefits and work will pop up try that a few times

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One of the important things about modern treatment for RA is that treatment is started promptly and fairly aggressively. This is to avoid joint damage and to reduce inflammation as quickly as possible. RA is an auto-immune disease and affects more than just joints so it does need to be treated quickly. I think you need to chase your GP.

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Mine took 6 months I resigned in the middle of this as I was to ill to care about anything . Not my best life decision . I did apply for esa so I would get stamp paid . Be ready to fight it is absolutely the most degrading thing I have ever done . Forget my 38 years of solid work I was made to feel as though I was conning the DWP . Read everything and get every piece of evidence you can get hold of . Good luck hope you have an appointment very soon 🌼

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Hello I live in Hertfordshire in the south of the County near Greater London border and I attend Barnet Hospital. The service has been very patchy throughout the years (16) since I was diagnosed. It started out as being very slow but improved considerably unfortunately since its been under the Royal Free the service has deteriorated and my rheumatologist was very dispirited last time we spoke she was thinking of leaving and she is brilliant. It is difficult to get treated as RA patients are kind of "tagged onto" the day treatment unit and waits can be quite long for treatment. My last appointment was cancelled with no reason given and there is no clear course of action given to patients if their condition deteriorates. On the plus side the staff on the whole are caring and dedicated to doing the best they can for patients. Hertfordshire Adult Care is excellent and I believe you are entitled to an assessment of your care needs. I have had adaptations to my home and received fantastic service. I tried for DLA (as it was then) and frankly the procedures just added to the stress causing my disease to worsen so I got help from the money unit at Herts CC who again were so good they visited me at home and helped me with filling in the forms and getting medical evidence etc. although I think that a home visit from the money unit was for over 60s only but that was some time ago so it may have changed. There are also voluntary organisations in Hertfordshire who will help with PIPS and your local library and herts online may help here. I would strongly advise getting help and support as the procedure for claiming any benefit can be extremely difficult and stressful and support from those who know the system can be beneficial. I do not know about other hospitals except to say that I have met other patients at groups and I don't know if any of them are any better. It is really helpful if you reach out to NRAS and other organisations for support and information as understanding this disease and its impact will help you to feel more in control of your life and better able to cope with pain etc.

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Thanks so much...thats really very helpful...i ve ended up being referred to Mile End in London , which comes under Barts... it seems to have good reviews..so fingers crossed.

Its a daunting journey ahead but am grateful for the support I ve had on this site from everyone.

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