Rheumologists have provided this risk score sheet for patients...you can use the photo or download the original.
Pmrpro
******WORRIED RE COVID AND YOUR RISK....What is y... - PMRGCAuk
******WORRIED RE COVID AND YOUR RISK....What is your risk score...USE THIS IMAGE AND/LINK ....replies are turned off now. 👍😊
49 Replies
•
Thank you for highlighting this 🌸🌸
Thank you so much Poopadoopy. Perfect timing. My brilliant Rheumy has left on maternity leave, so while I was just speaking to my GP a moment ago (phone consult about a urine infection) I asked her if my records showed I was someone who needed to be 'shielded'. She sounded confused so I said about the 12 week thing. She said that was for people with lung and/or heart problems and that I should ask my employer!!! Heaven help us. I hasten to add she was not my usual GP - I've never met or spoken to her before and we rarely get to see the same GP at our doctors' surgery.
According to the chart I score 4 points. I'll wait till Sunday and if I've not had any notification by then I'll chase it up. Once again, thank you.
• in reply toJanetRosslyn
It was pmrpros find....I supplied techie support! But thanks. 👍😊
JanetRosslyn• in reply to
Thank you PMRpro 
Hi Janet I score 4 and haven’t had any letter/ txt but it does say to contact gp if you haven’t heard by Saturday.keep well
Have the majority of PMR and/or GCA patients received this text/letter? Are they being sent out in alphabetical order or some other logical way? I haven't received anything?
Yellowbluebell• in reply to
Its likely to be alphabetical and so far only people with other health issues along side pmr and gca have received the letters. YBB
A comment from a Hospital Doctor today was that not all people in the Vulnerable Categories would receive a letter or text but they still need to self isolate and restrict at a more rigid level than the rest of the population. The high risk people who need to Protectively Shield are , most texts were received yesterday in this group , or GPs surgeries are trying to contact them to inform them.
If you call the GP here at the moment they are constantly engaged making phone calls .
Other people on steroids should consider themselves vulnerable even without a letter and take sensible precautions now , less face it last nights announcement in the UK , is virtual lock down anyway.
The Doctor also confirmed that appointments in Hospitals are cancelled but you may not receive notification immediately and will receive a letter or call in time. As they are busy.
• in reply toBlearyeyed
I am not too concerned with my 'score." I am self isolating and have been for 11 days, with NO plans to leave the house.
My concern is food! Here, in Brighton, food delivery bookings are now in the 3rd week of April, but you cant even book them, because the stores have not yet opened them. Based on what I am hearing, the grocery stores are a nightmare; with hoards of people and lots of empty shelves.
Sainsbury has opened up some early morning shopping times, specifically for people over 70 (I'm 65) and for "vulnerable" people. This allows them to shop without the masses of people and when the shelves are stocked... I don't want to go to the grocery store, but if I can't get home delivery, this is my only option.
Having this NHS text would help me gain access to these shopping hours
Just wondered how the NHS identified "vulnerable."
• in reply to
If you are not shielded you are allowed to do emergency shop. I too have been isolated for a couple of weeks apart from a visit to get meds because I missed delivery slot timewise. No food delivery until 9th April. I did some preparation in February when it became obvious something would happen like this. I don't have the budget for hoarding so got a few extra tins and noodles in. I am now shielded so no vists to shops any time. I luckily got in on veg delivery 3 weeks ago. I might be getting food in and meds delivered but its no picnic for anyone ...literally.
The links I mentioned give the scores and/or classifications they are using.
Pred dose, age and the comorbidities add up to give levels of risk. Over 20mg pred is high risk as is a lower dose of pred plus another immunosuppressant drug. Above 10mg pred plus comorbidities such as diabetes, hypertension, asthma which has required repeated steroid management or hospitalisation, renal problems and various rheumatological disorders make you high or very high risk.
Blearyeyed• in reply to
Stores are actually being considerate to those arriving in the vulnerable categories understanding that not everyone will receive a letter or that they will not arrive quickly.
As you should have your steroid medication card or book, if you need proof for entry to a store , this should be sufficient.
Knowing Your " Score" may not be useful to you personally , but it is helpful to know for many forum members whom may not receive a text or a letter because there vulnerability is based on more than one condition of medication , not just the single Chronic Conditions currently on the list. They are understandably confused.
By estimating your future score people can determine if they just need to isolate or should be taking further shielding precautions within the home as well while they wait for information from Text or the GP.
The post with the chart attached was to help all the people reading it have the choice to use the right information to help calculate their options.
Food concerns and inability to book deliveries is happening everywhere , not just in Brighton or the big Cities , Rural Communities are hit too.
Supermarkets are , however, taking all consideration on whom gains entry. My husband is Type 1 Diabetic and he had access to these hours this morning simply by using his insulin bracelet and med box as proof. You can also ring your local branch tell them your situation and leave your name at customer services if you are queried at entry to resolve any difficulty.
Click and Collect / Contact Support is the preferred option for you to take if you have friends or family. Where possible we are being asked to be considerate and reduce use of delivery services saving them for those whom live alone with no other support.
Having a friend or family member ,or local group , collecting your shopping for you and delivering it is being advised to all Self Isolating People to achieve this goal.
• in reply toBlearyeyed
That is an excellent idea! Of course, my Steroid Medication Cards... I have about 20 of them! Thank you!
My score is officially a '2" based on this information, but my Rheumy recommended (by email this afternoon ) that I consider myself "shielded" because of other medical issues not listed here.
And please know, I wasn't trying to imply I was special or that had a unique problem, I do appreciate everyone, i.e. city, rural, etc are in the same boat... I was just trying to understand what others are doing.
Devoid• in reply to
Is there anything local that has been set up to deliver to the vulnerable?? In our town they have made a list of small shops and their contact details, ours is on Facebook but I think the local council have it also People are saying it’s working very well here,so worth enquiring in your area
They are allowing all week for them to be sent out - but the info is available in other posts to work out for yourself if you are at high or very high risk due to condition. I have also just posted about a link to apply for yourself.
Or just use the chart above and work out your own score , but also take into consideration your age , and if you have more than one underlying health condition.
Based on the health conditions also highlighted at the bottom of the table people should remember they get a score of 1 point for each of the underlying condition and their age not just 1 point for all of them .
Example : Me based on this table alone
Prednisone dose over 10 mg for more than 4 weeks 2 points
Pre-existing condition of Heart requires Medication 1 point
Pre existing Condition affects the Breathing requires Medication 1 point
Pre-existing Condition affecting Neurology requires Medication 1 point
Total 5 points
Course of Action : Protective Shielding
Thanks for this, it’s very useful.
My first rheumatology appointment was cancelled last week, I had a telephone appointment with my gp today. I had to ask her about my vulnerability, I am currently on 35mg of pred, as of today. She was so blasé, said, I might want to protect myself more if I have to go out! I’ve not received any notification from the nhs and because I’ve not actually attended a rheumatology clinic as yet, they won’t contact me!
• in reply toMjw123
Check yesterday's chat (pinned posts...scroll down) there is a table in that rheumatologist advice post that tells you exactly.
• in reply toMjw123
I posted a few days ago with the opinion of a top PMR/GCA rheumy who is of the opinion anyone over 10mg is at increased risk and over 20mg definitely so. PMR itself only counts as increased risk but GCA is high risk - and then you add in over 20mg pred and you are vulnerable. Not impressed with that opinion!
• in reply toMjw123
Fill this in...and see
gov.uk/coronavirus-extremel...
Blearyeyed• in reply to
As ever , only works to get you support within England , press Wales , you just get some of the round up notifications no form of our own or advice about additional support , sigh!!
wales seems to be ignoring us all, even the gp here seems to have no clue whats going on and no help at all on their health page. useless
I got my call from my GP and letter yesterday as I can't do texts and I am on the Shielding List and I felt very sorry for her .
She said they were calling everybody in order of risk from the surgery . They are already completely overwhelmed at surgery level even without seeing a lot of cases yet with no admin support or proper information from the Assembly.
Hospital doctors were also trying to contact their own patients who would be at risk but don't necessarily meet/ fit in the Shielding Group that is available at the moment but they are obviously busy dealing with patients on wards.
She also takes rota time in the main hospital like them all and she says it's already feeling like firefighting and she is very frightened.
I gave her some advice on making sure she took some time in her day to try to distract her mind and get calm and told her about the forum and everything it has been doing for weeks to try and get the stay at home message across.
She was so thankful and said, " please , please continue helping us like that , it's so good to know we are getting help from people outside to spread the message , we need all the help we can get as we aren't getting enough from the people who should be doing it ".
Thanks for bringing this to the fore. It simplifies things rather than having to wade through lots of different info/links. Hopefully it will mean less questions on the subject for your good self and other moderators
That is the Text that they have stated they will be sending to everyone today , as part of the general lockdown.
Basically , the whole country is to stay at home under restricted activities now .
All vulnerable people are getting lots of advice including from sites like this , GPs, News advice on questions to Doctors to try and hit it home to also be more vigilant and get deliveries and not to out and practise greater distance at home.
The individual texts for 1.5 million are for those most at risk who need to take extra precautions even in the home in all their activities and these people are virtually under total quarantine.
Let's start using the real words , people understand , quarantine , lockdown .
People get confused by Namby , Pamby terms like Social Distance and Protective Shielding , which is why they don't think it's a serious rule .
I know the wording is allegedly chosen to reduce Anxiety or Panic , but that isn't happening is it , in fact it's causing more Anxiety and Panic because people have no idea where they actually stand.
I am protectively shielded , like you , my OH put on our Viking helmet yesterday and grabbed a mallet and blanket cape and followed me ( at a safe distance ) pretending to shield me for his own amusement. He's only been home four days , if anybody is going to need Protective Shielding soon it will be him!!!!
( He is rigidly self isolated as people on Steroids with underlying health issues and if the right age who need rigid Social Distancing should be as he is Type 1 Diabetic)
I love the sound of your husband! My sense of humour
Always a silver lining to everything then! 😉
I’m currently very envious of the next door neighbours' dinky little summer house they just had built last month.....
My friend has a " She Shed" that her OH then said he would take over last year to do his work from home but outside the house , filled it up with stuff , never completed organising it and he's still cluttering up her house with his clutter and paperwork . She endlessly whacking over piles with her crutches , now she's got him and the stuff all day she's considering Room Isolation.
I'm a 9 but more importantly, I am impressed with all the tools you have been given there and how seriously the UK is approaching this. I'm glad to hear you are 'shut down' to avoid contamination as much as possible. I keep you all in my prayers and am ever grateful to you! Now..take on the day, read, sketch, scratch, embroider, knit....I just might paint(a picture) 💗💗
• in reply toGrammy80
I may be doing that too. I am hoping veg seeds come soon. I will order the potting sheets and plant them and watch 3 months growth start. 🌻🥬🍅🌶️🥦
Grammy80• in reply to
That sounds like great fun... Let us know when your seeds sprout!!🌼🌻🌷.....🐝🐝❤😘
• in reply toGrammy80
I have ordered the pots...let's hope they arrive. If not I will pot directly. It's funny. Last year I bought 8 bags of compost...really big bags. I used about 6 tomato's bags and only used 2 bags of the compost. Funny how such things happen. I could plant enough food for the autumn hopefully. I will leave a few potatoes from my veg box to sprout and plant those too. 🌻
The UK may appear to be taking this seriously - but they were told by other countries over 2 weeks ago they should have been doing this then but thought their modelling scientists knew better. Real events always show up the weaknesses of modelling - and Italy had the real events. The UK kept saying "Oh, but we're 2 weeks ahead of Italy ..." - Italy imposed the whole country lockdown, tougher than that of the UK, just over 2 weeks ago and have repeatedly said they now realise it should have been done earlier. We were already under some restrictions before that.
We are still a couple of weeks behind but I fear some of our officials are not taking it as seriously as they should... it seems they're more concerned with the economic numbers. I'm very concerned about the growing exposure and contamination. We are truly just at the beginning of all of this. StayWell
• in reply toGrammy80
Just stay home if you can. 6ft distance, wash hands and all surfaces.
Grammy80• in reply to
I haven't been outside for 2 weeks... 😜🤪😱🤯Except to empty the trash! Where I go to church there was one couple that had been on a cruise and another woman that had been in New York for 5 days🤧🤧 oh, so I decided to hunker down! There is a small group of us that get together on the computer for 15 or 20 minutes in the morning and in the evening.... Other than that it's the sound of my voice. La la la la la la la🎶🎵🎶🎵
Count your blessings that you're in the UK and you are spared my singing!
• in reply toGrammy80
I am glad you are taking care. It's all the non forum PMR GCA people that aren't getting info that's worrying. Isn't it great that you can interact with friends. I had family quiz on Saturday.
Believe me, when me and the dog start singing. 🤪😘
As long as you take it seriously and follow advice you see hear before the Government finally catch up , you can be well prepared , ahead of the curve and sitting with your feet up in social isolation while everybody else is still running about . Glad the forum is of help to you and take good care xx
Thanks so much, excellent advice. I've been painting but I think I'll take a little walk. We got 6 in of snow last night our first real snow in Maine on the winter. The sun is shining and the walks are clear so I'll stroll❤
So age not a factor in this table? Despite the emphasis on age in the public discourse? Not sure I buy it. I read in the Daily Boris that UK data showed that of the 196 patients admitted to critical care (at that point) just 3.7% were immunocompromised. 70% though were overweight.
These are tables for professional use for all ages - and age is also a factor to add in on top.
Age over 70 does have a point along with other illnesses in the table .
So it does. Did you check out the research cited in the Telegraph today, by any chance?
Not yet , I've been busy on the phone this afternoon checking that all my elderly relatives , friends, and neighbours were sorted for a friend to deliver to them and chatting to people to lift the gloom , all I can do to help really as I'm Shielded but I want to do something to help.
I will try to look during my evening read , do I have to sign on to that paper to see an article or is it just sign up free?
Thanks for all the great posts your very kind
Not what you're looking for?
You may also like...
So you've had your Covid jab - what can you safely do now? And what should you still be doing ...
https://www.theguardian.com/world/2021/may/01/so-youve-had-your-covid-jab-what-can-you-safely-do-now
I have had PMR for 2 months now and the pain is quite bad, what strength steroids is normal to start off with?
My GP has had me on 5mg to start and now on 1mg and now getting severe pain in my wrists and my...
I would appreciate your thoughts on what is happening to me right now and the best way to get help or do I just plough through.
Back story of LVV and having had a second PET CT at the end of Nov 2022 I have been told I no...
BBC Start The Week programme about a book on Inflammation
Some of you will remember the BBC Start the week programme a while ago that discussed The Inflamed...
Side Effects
I've been operating under the impression that the lower the dose of pred, the fewer and less...
Related Posts
At Twenty Five and Still Alive! 
Recent Post on Muscle WastingModeration team
Fran_BensonPartner
SophieMBPartner
