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NRAS_UK
Приєднався 1 гру 2009
The National Rheumatoid Arthritis Society (NRAS) is the only patient-led charity in the UK for people with Rheumatoid Arthritis (RA) and their peers. We offer information and support on our helpline, campaign in Parliament for better services, fundraise, & run support groups across the UK.
An Introduction to PIFU (Patient Initiated Follow-Up)
Patient Initiated Follow-Up (PIFU) pathways are not new although have not been commonly used. You might have heard of them as Direct Access Clinics or Patient Initiated Return pathways. However, these types of follow-up pathways are being very widely introduced across all conditions including rheumatology.
NRAS is supporting a research team who are conducting a clinical trial on PIFU across many hospital sites in the UK to gather more evidence about how this is working. As part of this work, the team have produced this video, which gives a short introduction into what PIFU is and what it entails.
To find out more about PIFU, visit: nras.org.uk/pifu
This video was funded by a grant from the British Society for Rheumatology.
#PIFU #rheumatoidarthritis #arthritis
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You can find out more about RA and JIA at our website: nras.org.uk/
Follow us on our socials:
Facebook: nationalrheumatoidarthritissociety
Twitter: NRAS_UK
Instagram: nras_uk
HealthUnlocked: healthunlocked.com/nras
NRAS is supporting a research team who are conducting a clinical trial on PIFU across many hospital sites in the UK to gather more evidence about how this is working. As part of this work, the team have produced this video, which gives a short introduction into what PIFU is and what it entails.
To find out more about PIFU, visit: nras.org.uk/pifu
This video was funded by a grant from the British Society for Rheumatology.
#PIFU #rheumatoidarthritis #arthritis
_____
You can find out more about RA and JIA at our website: nras.org.uk/
Follow us on our socials:
Facebook: nationalrheumatoidarthritissociety
Twitter: NRAS_UK
Instagram: nras_uk
HealthUnlocked: healthunlocked.com/nras
Переглядів: 134
Відео
NRAS Live: Everything you need to know about Foot and Hand Surgery for RA
Переглядів 1302 місяці тому
Hands and feet are often the first things to be affected when diagnosed with RA. There are many joints in both hands and feet and surgery is sometimes necessary, despite improvements in drug treatments in the last 25 years, particularly for those diagnosed prior to the advent of biologics. Watch this NRAS Live back, with host Ailsa Bosworth MBE and our expert surgical panel - Mr James Davis (Or...
Osteoporosis in Rheumatoid Arthritis
Переглядів 2352 місяці тому
In this video taken from our NRAS Facebook live, Sarah Leyland from the Royal Osteoporosis Society talks to us about osteoposoris, what it is, why people with rheumatoid arthritis can be more susceptible to it and what can be done to help protect our bones. To find out more about osteoporosis in RA, please visit: nras.org.uk/resource/osteoporosis-in-ra #rheumatoidarthritis #osteoporosis #invisi...
Understanding Rheumatoid Arthritis Treatment Options - Methotrexate Tips
Переглядів 8342 місяці тому
In early 2024, we carried out a survey on rheumatoid arthritis medicines, how they are administered and the choices patients living with the condition received. This video presents some of our findings, busts some popular myths surrounding methotrexate and other forms of RA medicine and finally gives you some tips for those of you using injectable forms of medicine. 00:00 - Introduction 00:54 -...
Pregnancy Guidelines in Inflammatory Rheumatic Disease (Additional Video)
Переглядів 979 місяців тому
If you joined us on 27th September for our NRAS Live event on the new pregnancy and breastfeeding guidelines, you may have noticed we lost one of our guest speakers shortly after we begun. Nurse Specialist, Louise Moore - who was also on the Guidelines working group, had some technical issues due to Storm Babet back in October. Therefore we have filmed this accompanying video to share Louise's ...
Top tips on celebrating Diwali with Rheumatoid Arthritis
Переглядів 1309 місяців тому
Join us in this heartfelt celebration of Diwali, the festival of lights🪔✨ Living with Rheumatoid Arthritis shouldn't mean you miss out on celebrating Diwali. In this video, our RA warrior Joti Reehal shares her personal experiences, tips, and inspiration to help you make the most of the festival while managing your Rheumatoid Arthritis. For more information about RA in Hindi, Punjabi and Urdu, ...
Kirsty Young's Story - Living with Rheumatoid Arthritis
Переглядів 2,9 тис.10 місяців тому
“It can strike anyone at any age, from any background. And there are around about 450,000 people in the UK right now dealing with their Rheumatoid Arthritis”. Kirsty Young, Scottish television and radio presenter was diagnosed with Rheumatoid Arthritis in 2018. Hear Kirsty’s story of living with Rheumatoid Arthritis (RA) and why she supports NRAS. Every donation to NRAS is a step towards a brig...
Rheumatoid Arthritis Awareness Week 2023 | #RAdrain
Переглядів 1,7 тис.11 місяців тому
Rheumatoid Arthritis Awareness Week 2023 | #RAdrain
NRAS Live: The Future of Remote Monitoring & RA
Переглядів 488Рік тому
NRAS Live: The Future of Remote Monitoring & RA
Top tips on approaching your rheumatology consultations
Переглядів 380Рік тому
Top tips on approaching your rheumatology consultations
Foot health while living with rheumatoid arthritis - NRAS Live with Dr Lindsey Cherry
Переглядів 399Рік тому
Foot health while living with rheumatoid arthritis - NRAS Live with Dr Lindsey Cherry
The importance of exercise when living with inflammatory arthritis - NRAS Live, March 2023
Переглядів 353Рік тому
The importance of exercise when living with inflammatory arthritis - NRAS Live, March 2023
Introducing STROP | Real time auto-correction for people with rheumatoid arthritis!
Переглядів 147Рік тому
Introducing STROP | Real time auto-correction for people with rheumatoid arthritis!
Ailsa Bosworth - Presentation at Royal Society of Medicine
Переглядів 208Рік тому
Ailsa Bosworth - Presentation at Royal Society of Medicine
NRAS 21st Anniversary Gala Dinner - Pre-Dinner Speeches
Переглядів 71Рік тому
NRAS 21st Anniversary Gala Dinner - Pre-Dinner Speeches
NRAS 21st Anniversary Gala Dinner - NRAS Champions' Awards
Переглядів 59Рік тому
NRAS 21st Anniversary Gala Dinner - NRAS Champions' Awards
Rheumatoid arthritis and supported self management - NRAS Facebook Live - Oct 2022
Переглядів 251Рік тому
Rheumatoid arthritis and supported self management - NRAS Facebook Live - Oct 2022
How does rheumatoid arthritis affect foot health? - RheumZoom - June 2022
Переглядів 843Рік тому
How does rheumatoid arthritis affect foot health? - RheumZoom - June 2022
NRAS 21st Anniversary Gala Dinner - Rheumatoid Arthritis Charity
Переглядів 1,1 тис.Рік тому
NRAS 21st Anniversary Gala Dinner - Rheumatoid Arthritis Charity
Do people understand their RA treatment outcomes?
Переглядів 587Рік тому
Do people understand their RA treatment outcomes?
A conversation with Sheila Hancock - RA Awareness Week 2022
Переглядів 2,4 тис.Рік тому
A conversation with Sheila Hancock - RA Awareness Week 2022
Anita's Story - RA Awareness Week 2022
Переглядів 3,6 тис.Рік тому
Anita's Story - RA Awareness Week 2022
Osteoporosis and RA with the Royal Osteoporosis Society - A discussion with Sarah Leyland
Переглядів 3012 роки тому
Osteoporosis and RA with the Royal Osteoporosis Society - A discussion with Sarah Leyland
How real world data helps treatment of inflammatory arthritis - A discussion with Prof. Gareth Jones
Переглядів 2712 роки тому
How real world data helps treatment of inflammatory arthritis - A discussion with Prof. Gareth Jones
What is Patient-Initiated Follow Up (PIFU)?
Переглядів 6362 роки тому
What is Patient-Initiated Follow Up (PIFU)?
Fatigue and Inflammatory Rheumatic Conditions - Emma Dures, PhD
Переглядів 9182 роки тому
Fatigue and Inflammatory Rheumatic Conditions - Emma Dures, PhD
The Importance of Exercise in Inflammatory Arthritis - Professor George Metsios
Переглядів 1 тис.2 роки тому
The Importance of Exercise in Inflammatory Arthritis - Professor George Metsios
Florence's Story - Rheumatoid Arthritis Patient
Переглядів 8272 роки тому
Florence's Story - Rheumatoid Arthritis Patient
I really appreciate you making this video. My ex of 4 years cheated and gave me Herpes virus during our relationship and I was devastated. You've made me feel so much better Dr Adigba on UA-cam and seeing all these people share their stories……….😊
great presentation
First of all I am extremely grateful to the charity for providing this information it is invaluable in tackling this disease. However I do feel that as a lay person looking for information much of this video was too scientific and was geared to medical professionals looking to advise perhaps on dietary health. It was for me far too complex and wordy. Please consider that not every one of your viewers will have an in depth knowledge of nutrition.
Hi Tracey, thank you for watching and thank you for your feedback and we absolutely understand where you are coming from. We will try and bare this in mind for future NRAS Lives. 🙂
It would be interesting to know how an Ayurvedic Diet impacts RA and also the Fast 800 diet by the late (RIP) Dr Mosley?
Does anyone take Adderall for fatigue?
And thank you! I have had RA for some 10 years. Always too afraid to take biologics despite the reassurances of my wonderful RA consultant. I think I will resume the biologic conversation at my next appointment. Thank you again. RJ
The name of the support group mentioned by Sheila and Clare? Sounded like “health a lot”
HI Helena, it's actually HealthUnlocked! There's a link to the website in the video description if you would like to get involved.
Hello Cathy and everyone here. I am so moved by this video, I do hope Cathy that you have found some help or support. I don’t (yet ) have severe RA but I have it in some joints, plus I have polymyalgia rheumatica and OA as well as several other chronic illnesses. You have expressed so well how I feel. Good luck and hugs to you xx
I just think we have this terrible decease.but we can try and make it better by exercise. Healthy eating. no salts or fatty foods Vitamin D.do are best.to feel somewhat better. better.
Thank you so much.
That's exactly what I thought when I got diagnosed at 29 years old. I am now 65 years old, 1 baby, it was a shock. I had weave my way through so much by myself as the year was 1987, not much advice around and certainly no help groups, until much later. Luckily, I had a positive attitude, but it certainly took my positivity to high limits. The medications are so much better now for RA, but that has been quite the journey.
How are you right now?
Thank you Maddy. This was very well said.
For me having RA the worst thing is the fatigue, and my specialist keeps gaslighting me about it. If I sleep at all I wake up absolutley exhausted and have to lie down for a few hours during the day. It sucks and people do not get it, especially the Dr
you had another video that is now private, it was for an awareness campaign please reshare it
Hope things have improve for you Karen. I'm at the beginning of my arthritis journey waiting for my appointment at the hospital x
Sorry that I missed the livestream, but would like to ask a question. I was due to have a biologics nurse appointment in January 2024. I had received notification from the hospital that it was cancelled & I would receive further information, I think. I’m aware of the new “PIFU” (patient informed follow up) through yourselves. As I have other conditions & a serious one since 2022, struggle to keep up with many blood tests & other appointments. I have found myself thinking, do I still need to be on the Biologics injections, will the nurse or hospital contact me if something changes? It can be hard to get hold of specialist nurses at the hospital😭
Clare, I will be sad when you retire. You are such an active and communicative CEO, and I will miss your cheery leadership. I wish you all the best for the future, and offer a big ‘thank you’ for all your work representing the RA community. 💐
Excellent and useful video
I am so sorry you are going through so much. I see this video is 5 years old. I really hope that things have improved for you. You are very brave.
Very helpful and what brave young women
So sorry to hear of your situation I understand iv got spinal nerve damage, but recently got macrcytic aneamia, gastroologist thinks I could have rheumatoid arthritis, more test to do, lots of love to you I relate to the awfull fatigue, 🙏 s for you ♥ ❤❤ love jayne walton on husbands page bill of bristol england❤❤❤❤
Did you mention getting a pet that meets your mobility needs, very good at reducing stress and adding massive plus to mental health 🐕🦺🐈⬛🐬🐦
A great tip Ralph, thank you!
I'd rather be dead than have RA. This disease is terrible. It has stripped me of any hope or optimism. Been on Prednisone for over a year. Can't get infusions until done with this latent TB antibiotic and can't run with my boy. I hate this life with everything in me. I hate it.
Just discovered this charity today. My sister has RA. I want to help her in any way I can.
What amazing words to hear, thank you Lynne! ❤
Thank you Kirsty for this🙏
What an inspirational woman!
Hamara desh chand per pahunch gya sir per arthritis ka ilaz kar ke bilkul thik ni kar sakte hey Esa kiun ji bari pain. Hoti hey please treatment nikalo
This is really moving. I think it does such a good job of showing the idea that when you live with fatigue, even simple tasks really drain your energy levels. I also think many will relate to the idea that often, you will make it through the working day with pain and fatigue, and sadly it is then the social events that suffer.
Thank you!!
Treating arthritis can be tough these days because it's hard to find the right help. But Planet Ayurveda has the best herbal solutions and consultations. What's even better is that if you can't go to their physical location, you can get help online.
I HAVE APS SYDROME & RA
We're here if you ever need anything, Peter!
👏
Promo*SM 🔥
To me this just shows RA-lite and doesn’t in any way reflect my experience of this horrid disease. Maybe I’ve just been unlucky.
Unfortunately RA effects people in many different ways so it's important to show different experiences. We're here if you need anything!
I know the feeling.....A video which says everything about RA without any words. Thanks for putting this on line. In the words of the song... ''you say it best, when you say nothing at all'' x J x
Now that's a throwback! Thank you for the kind words, Judy. 🥰
😢 so true. Friends and family just don't understand the struggle.
The more we educate people, hopefully the more they will understand!
Brilliant video, congratulations.
Legend! Thanks Willy 😊
Rhemutoid arthritis patient get severe fever am getting fever since 1month
Hi Ammu, we suggest calling our helpline if you are in the UK. Find more details at: nras.org.uk/helpline/
@@NRAS_UK tq for ur reply and am not in uk am in india
🤗🥰
Any solution for ra
Hi Rajesh, while there isn't a known 'cure' for RA, we have lots of tips and tricks on our website: nras.org.uk/
Thank you. Exactly what I go through every day & I'm so pleased you've done this video. I hope lots of non-sufferers can see this & appreciate what we all go through. I stii have to do all the daily things that I used to do 25+ years ago before I got RA, but now it takes me a lot longer and more pain than I had before. So, that's why I appreciate your video.
Thank you for the kind feedback, Derek! 🤗
Very useful video.. Thank u
Dr.Bruce Fife recommends swishing coconut oil in the mouth on an empty stomach for 12 minutes each day/ The coconut oil captures bacteria viruses in the mouth that go through the pores in the teeth into the body. The oil is spat out after 12 minutes. Having less of these disease agents entering the body gives a chance for the body not to be overwhelmed by bacteria etc. that cause the rheumatism and gives it a better chance of ridding the body of that which causes rheumatism and arthritis.
I have just been diagnosed with RA and thats about it all the doctor has told me it will progressively get worse? I'm awaiting seeing physiotherapy to see if I have carpol tunnel also as I often drop things and can't make a drink without making a mess
I also have RA and to hear you put fatigue up there is great. All of my Drs seem to ignore this and it infuriates me xx
The looking ok can feel unbearable. Or people saying how well I look! I say that’s the steroids.
So many times I went to the hospital for help only to be told you look fine go home , be careful of the steroids as your sugar levels jump up , mine hit 28 & became type 2 diabetic, take care 🙏
😢well what if you have no friends People don't want to hear about your problems and pain
Hi Lisa, our helpline is open 9.30am - 4.30pm, Monday to Friday if you need someone to talk to. Please don't be afraid to reach out!
I do
Lots of really useful tips here.
Thank you Ralph! 😊
Omg yes!🙌