This is maybe not practical but can the government guidelines be changed to include lupus specifically? The Irish guidelines seem to specify lupus.
I have read many comments today and there seems to be a lot of confusion regarding self isolation depending on medication, rheumatology advice etc.
I feel if lupus is not specified, employers may prevent employees from self isolating. We all know how dangerous and unpredictable lupus can be (as with any autoimmune condition) and I feel we should not be put at risk depending on what medication we take.
What do you all think?
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Charlie_25
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I have to agree with you. I told my boss today that I would be self isolating as of the weekend and he wasn’t impressed. Problem is I look well and I think they forget I’m actually ill. I’m on immunesuppresents so it really is serious for me.
I spoke Paul Howard today about this. I'm a healthcare worker with SLE and various related conditions. Paul said that they were working on it and may go to Parliment today. I have mwrtten yo my local MP about it. We need some clarity.
That's really good to hear. Like you I work in the health sector and also have lupus and underlying conditions. On a worrying note, Ive just come out of hospital as an inpatient and was shocked at the attitude of the band 7. One of the nurses is pregnant and when she approached the subject of self isolating she was informed that there was no need as they don't have any patients with coronavirus in that ward!! Really? No need for testing then as she is obviously the fountain of knowledge
Yes indeedy, autoimmunity has no mention at all in the government guidance...but are they going to forget us? OH NO THEY'RE NOT!
I suggested a govt petition a few posts back, but our hero Paul is going one step further...straight to parliament HOORAY!!! Let's all write to our MPs xxx
Had a reply back from MP (hm, within the hour!)….he's unaware of the situation:
'I can understand your concerns but my understanding is that ALL people with underlying health conditions are viewed as vulnerable and need to act appropriately.'
eekt - I do see a section under « weakened immune » systems that probably was meant to include patients with autoimmune disease on immunosuppressants. Still find it odd that it is not spelled out as it is in most of the literature.
Thanks Kay! Indeed, although lupies have a 'dysfunctional' immune system that comes the condition....and it can go into overdrive, with cascading inflammation....and of course lupus being what it is, a 'mild' case requiring no medication can suddenly need urgent medical attention! So I don't think autoimmunity has been full considered xxx
It is true that lupus seems to make people susceptible particularly susceptible to infection. My rheumatologist does not think I am at the same risk with UCTD and not on immunosuppressants. Complicated. It would take a lot of studies to know all of this. But maybe it is as simple as lupus tends to have multiple auto-antibodies and patients are more fired up. There is definitely more organ involvement than in some of the other CTDs.
I am on a ten day self-isolation because of fever. My rheumatologist is not worried about me. 😅 But I may be nuts after being in prison.
That's what need to happen in regards to the state of rheumatology care within the Betsi Deathboard (North Wales). Wrexham Maelor has no rheumatologist and a 2 year wait. Glan Clwyd has one rheumatologist, no rheumatology department and no aftercare (physios, occupational therapists and councellors) and a 9 month wait
I was diagnosed by Glan Clwyd rheumatologist, but have had nothing but failures.
I am newly diagnosed SLE (Oct 11th, 2019), and redundant two weeks later and in my absence. No treatment plan. No meds. A lot of health issues with no answers. No access to healthcare. Permanent leukopenia and neutropenia. Raynaud's confirmed. I suspect sjorgens, but no healthcare.
I don't see Paul doing that for me. Kevin has been brilliant and raised it with MP and Health minister. Nothing has come of it.
Just look through my post history to see just how well I am doing. But no, why would anyone help and fight for me. I have fought and fought and fought. But why bother? It's clear that I don't matter. And I know that.
Breathlessness and tight chest is unreal as stress make sit worse. Not that anyone cares as all that is going on in the world is coronavirus. Just because that has been released, it doesn't mean there aren't other illnesses and conditions around.
And dizziness, body tingling and weakness on left arm and left leg, 'corkscrew' effect in my stomach, feels as if my head and/or body has to catch-up as everything spins - not.that anyone cares.
I was fighting for change - in many, many ways - as no one, NO ONE should go through what I have. But I am done. I have had enough of this torture. It needs to end. Now.
I imagine Paul Howard (If that's the Paul you mean) is prosctive with regard to the Corona virus; on behalf of Lupus diagnosed people in general, not for individuals. I emailed my MP myself. You definitley need to try and get them on board if you can. I'm sorry to hear about your situation, have you asked for any emotional support from the bus, mind or Samaritans ?
Yea, I did mean Paul Howard. My situation was long before coronavirus showed it face and took over everything. I NEED access to healthcare. I NEED a rheumatologist. I NEED a treatment plan and meds. Not that anyone cares. This was long, long before coronavirus. Lupus is active and ANA in October when diagnosed was 1/1280 (in July 2019, 1/80), not that I have any idea what that means. Mental healthcare doesn't exist on the NHS in North Wales (see my post history), Mind are brilliant but unsure as to how they can help.i these times and an unable.to.get to local branch. And seriously, if ANYONE mentions Samaritans one more time!!!!! Look at post history.
I just want and so desperately need access to healthcare. But no, we have postcode healthcare.
My issues are nothing to do with coronavirus. I don't give a crap about it. And my issues with access to healthcare were long ago. I don't see anyone fighting my side. But I know that is because I am nothing and I am worthless. I KNOW!
You are not worthless. You are entitled to healthcare. You had a rheumatologist who wanted you on medication. When you decided to change rheumatologists, it seems this made for a difficult situation. Since the original rheumatologist was not going to be seeing you in follow up, he couldn’t write the prescription. That would have been irresponsible. Now that you are unable to see the rheumatologist you chose to see, could you go back to the original rheumatologist?
You need care. I think it doesn’t make sense to evaluate care on the basis of whether there is a department of rheumatology or not. We have many private doctors who perform at a high level without being part of a department.
You are deserving of care. Set that as your top priority.
I did not 'decide' to change rheumatologists at all! He failed. A good 60% of failures were due to politics and NHS Wales not getting it's fair share of rheumatology funding and Glan Clwyd having zero support it aftercare, whereas a closer hospital just over the border has an actual rheumatology department, 4 rheumatologists, physios, occupational therapists and councellors all within department. Plus, NHS Wales does noes have full treatment options, such as infusion therapy.
AND, he told me to ask GP for hydroxy - and they can't prescribe it. Outpatients manager managed to sort this. HOWEVER, I got side effect from the onset. GP unable to help as it's specialist drugs and under specialist care. She advised I stop due to the effects and said wait until I see a rheumatologist - yeah, like that's going to happen!
Funnily enough I have lived through it, do I know what has gone on which not what your take on it is at all.
So my above post still stands!!! You make it sound like I have been purposely awkward. But no, I was failed by the rheumatologist and have NO HEALTHCARE! Countess have rejected me (the hospital over the border), GP filled out IPFR after GP surgery closed to get me access to rheumatology at Countess.
And I HAVE set getting healthcare as a priority! I have been FIGHTING for months!!! And got precisely NOWHERE!! Why? Because I am nothing. I don't matter and I am WORTHLESS. If anything, without taking the rest of my life.into consideration, the last 12 months alone prove that! In both life events and circumstances and how I have been treated by individuals, companies/organisations and ex-employer!!
I haven't been here much recently, as I am coping with trying to self isolate, 3 children still at school potentially bringing germs into my house, 2 of whom are doing GCSEs this summer - or not as the case is now - and a husband still going to work. Plus my lovely support group members who are worried and need advice etc.
But this post and your comments jumped out at me and I feel the need to reply.
This is friendly, well-intended advice and not meant to cause offence.
We all know you have had a rough year. And I saw that you've had a car crash too recently. It's not easy being diagnosed with a rare, chronic illness and all that brings, physically and mentally. We all know. We've all been there. Got the t-shirt.
There are lupus patients here who have been dealing with this for 10, 20, 30, 40 years or more. Some diagnosed as children. Some have had heart attacks and some strokes. Some need organ transplants. Some have never been able to carry children. Some have had to deal with cancer on top of the lupus etc. I could go on and on.
There are also people here from Wales, who have been in this crap, broken system for years. People who have complained to their Health Boards and their Community Health Councils, MPs and AMs and hit bricks walls. Every time. We share your frustration with the Welsh Assembly Government for their terrible, inept running of the Welsh NHS.
We so get it. We do understand. You are not alone and you have received lots of support here and received some amazing practical advice too. Plus I know Kevin has personally got involved. The Chair of the charity.
I would kindly advise you, to not come here and direct your anger and frustration to the only people who get it. Your fellow lupies. Don't push away the one place you can go and rant and we get it. We support you.
We all love this community and are fiercely protective of it and each other.
You can also be warned and ultimately removed for unbecoming behaviour.
And don't attack Paul Howard.
He is trying to deal with this pandemic and all that that brings for us lupus patients, including trying to get the government to name lupus etc on the self-isolating list. He's scared for us. He works his socks off for us. You couldn't meet anyone more committed to our cause. But ultimately he cannot get involved in every members case. He does not have the time. Especially not now. His job is to assist us, protect us and fight for us as a group. Which he does very well.
Like I said, I don't want to upset you or offend you.
Message me if you need further advice on the AM / MP situation.
Hope this finds you well, also all our other Lupus warriors.
Could not have responded better in regards to Ceri’s post.
We all have our own demons to cope with, and without doubt our Lupus community is by far (at times) our life line when no one else listens. The support, advice and comfort is invaluable especially Paul, with whom I have much respect for. I really care about how the Corona Virus will effect us all, even in the wider community. We must stand together on this awful illness and continue to be warriors!
Take very good care of yourself and your family, this comes with Big hugs and much love xxxx
Eekt That's an amazing response within the hour! Even if he/she wasnt aware, they are now. A petition would be a great idea ! Ill sign just let me know where and when please.
CAROL mcl that's shocking but I'm not surprised. I think lots have the public are given situational advice according to how it benefits others I.e government, organisations, employers, schools etc. This is why we need clarity for benefits, insurers, financial institutions etc we need to protect and defend ourselves in every way possible, it's no longer just about our health. Let's hope thenpolitions get educated on long term conditions soon, for all ourselves. Thanks for replying. Take care Xx 😃
Exactly! My boss said - when I explained I'm vulnerable and will be working from home - 'do you have a letter'...9am the day after a 'letter' was announced in an obscure not-publicised announcement late the evening before...
I'm up very late for me Nipperrj (9pm bedtime for me 'normally') and working early tomorrow...fancy starting a post on a petition to see what numbers might be interested? Reckon RA, cancer, HIV/AIDS would be needed too to make the 100,000
Please could I put in a plea for Sjögren’s, Scleroderma and Vasculitis to be included so that all rheumatic diseases, particularly the ones I’ve mentioned here, which probably affect the respiratory system even more than Lupus or RA do, are included. It’s always the rare ones that fall off the radar and then people can’t show bosses or DWP because their rheumatic disease isn’t mentioned specifically. But together we people with rheumatic diseases probably amount to a lot. Solidarity is essential.
I have never drawn up a petition myself but am more than willing to support, sign and share to promote one. It’s silly am and I’m awake with my usual itchy burning hands and dry cough causing me to struggle to stay asleep a little but plan to email my MP first thing. X
When I spoke to Paul Howard today he mentioned a Petition. I'm not sure if it's something he is doing. I will look into it. In the mean time write to mps , I did a quick 5 min email. Petition will come. I need to know exactly where I stand,. 😷☠ all the best everyone x
Couldn’t agree more with you. Just e-mailed my MP. Hopefully if we get a petition going or lots of us e-mail our MPs we might get the guidelines updated. Things are difficult enough without having to justify our illnesses.
Take care and stay safe 🙂.
I have just emailed my Scottish MP requesting that the government list of high risk underlying health conditions should include all rheumatic autoimmune diseases including my own, Sjögren’s, which already causes me all the key symptoms described in Covid 19 information ie persistent dry cough, breathing issues, severe fatigue and flu like aches and pains.
Given the rarity of some rheumatic diseases, I think it’s important that all the related charities come together with support of patient communities, to lobby for all rheumatic autoimmune diseases to be included. This of course would cover people with Lupus and also Sjögren’s, Vasculitis and Scleroderma as well as RA.
Scottish Health Secretary Jeane Freeman said cancer is the priority a couple of days ago, which is of course discrimination under the Equality Act LOL! xxx
This wasn't actually my point - it was Eekt's., but guess it all depends on what type of Cancer and how severe it is and what presentation of Sjogrens it is and how severe it is? Anyway unlike other rheumatic diseases, Sjogrens increases the risk of Lymphoma significantly.
I've had both too although you may not count invasive squamous cell carcinoma on the lip. But I have been using a skin cancer FB page for info on the powerful immunotherapy cream I was using on my lip over the winter and have seen the devastation skin cancer can cause.
However I don't think comparing is ever useful really, although I respect that you have your own experiences of each disease and your own unique perspective.
My main concern is that I don't have pulmonary arterial hypertension relating to my overlap connective tissue disease. But when I tried to explain this condition to my friend, who was just seen for her routine cancer review, she really struggled to grasp what this rare condition is and how serious it is too as a possible incurable complication of Sjogrens and CTD. I think rarity of any sort is very isolating because there is much less support from society.
If pushed I'd say that I'd rather have any disease that is potentially curable than have incurable Motor Neurone Disease or Pulmonary Aterial Hypertension - but there we are - that's just my perspective.
Yes, my reading was all underlying health conditions - to be fair the Sun newspaper on Monday had the best list including obesity or him over 40. I have had to send my caretaker home as he takes blood pressure medication.
The lesson in this is the importance of employers being educated in medical conditions and appropriate measures. Reading Kent Guidelines yesterday it was our role to say we are self isolating and if evidence (although should not be) is needed to show medical letters from the doctor.
All articles that I have read though have talked about compromised and immunity or suppressed immunity.
Thankfully I work for a company that respects its workers. My boss knows about my illness and on top of everything I now have a floppy heart valve, which he also knows. For me working on a checkout I'm in the line of fire, literally, with people coughing and sneezing, putting money in their mouths is the worst, out comes the sanitizer, bought before all this selfishness, and THEY look at you. This next 5 day block will be challenging. I managed to get some disposable gloves, because there's nothing worse than dirty money. Our store hasn't provided any of the workers with any protection, other than the sanitiser we have to clean our tills with. The queues are worse than Christmas and there is little or no time to clean the belt or the surfaces.
I run a support group in Wales and I have been contacted by many this week regarding various issues.
I have self isolated, well as far as I can, with 3 children still at school until tomorrow and a husband still working.
I am lucky that I do not work and so this doesn't effect me directly.
I am shocked and saddened to hear that lupus members are facing resistance from employers to them self isolating. How awful!
I have read the Guidance, which talks about autoimmune illness and people who are immuno-compromised. I thought it was kept generally vague so that it would cover all auto-immune illnesses. There being so many AI illnesses and rare genetic disorders etc, that if they start listing them they might leave some out accidently?? Perhaps I was naive to think this.
I have now emailed my MP, who is now Secretary of State for Wales, along with his colleagues local AMs here in Pembrokeshire, asking that they consider LUPUS UK's request to add lupus etc to the list, for them to be actually named. I think my MP because of his position in the Cabinet is attending Cobra meetings and he has been supportive so far, so I am hoping he will understand the importance of this request.
Bizarrely, we have a relative in England who has Juvenile Rheumatoid Arthritis and she has weekly methotrexate injections and humira injections too - her Rheumatologist telephoned her to say that as her RA was currently well controlled that she could carry on as normal and does not need to self isolate. I was so shocked. I want to say, well if it was me, I'd be home. I know children are said to generally get a mild form of this, but I wouldn't take the risk in her position. None of us know how this will effect us individually.
If we all email our MPs and AMs maybe we can help change this?
Got to say in a crisis you see the best of people and the worst of people. I was totally shocked to receive a phone call from my employer, who I have been very loyal to, disputing paying me SSP. I am not only anxious about getting the virus whilst I am on immunosuppressive drugs, I have also just lost a wage and having to deal with the reality that I am going to only be receiving £94 a week and I have now had to stress about getting that,SSP (which as a company they can claim back). I have had to call my doctor who has told me categorically that I need to stay at home and kindly (considering how run of his feet he must be) provided me with a fit note for a month to shut them up. What makes me angry is that I am a person with a chronic illness who is still working. I give 110%, don’t ever have unnecessary time off (can count on one hand how many days I’ve had off in 4 years) because I feel the need to prove I am worthy of employment although I have a chronic illness 😡😡
I’m so sorry to hear about the situation you have found yourself in, through no fault of your own. I take my hat off to anyone who works whilst battling this illness. I couldn’t cope with working, it was breaking me.
I can’t believe employers are being so unfair.
I think you need to take one of your letters to your boss, from your doctors, confirming diagnosis and medication regime. Along with the official government document which states those with autoimmune illnesses and those who are immune compromised.
There’s also lots of help for businesses. I’ve just seen to official link for employers to get info.
I’ll add it on.
I hope this is resolved in an amicable way soon. You certainly don’t need any more stress right now.
I do think that clarity in the form of a more extensive condition list would be helpful but I do worry that they cannot possibly include every relevant scenario or rare disease. The government high risk guidelines are an exact replication of the flu vaccine guidelines in order to catch everyone who is normally at a heightened risk of flu complications.
They do specify "a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets or chemotherapy". This categorically includes everyone on immunosuppressent medication for lupus (or other rheumatic condition), but is less clear on lupus itself (without relevant medication).
The guideline does however state that the list is not complete, but that "anyone instructed to get a flu jab as an adult each year on medical grounds" is included.
If you are advised by your medical team to get the annual flu vaccine then you should be self isolating for 12 weeks. I would think this bit alone should be sufficient for employers if you are not on immunosuppressant medication.
As I have been recently diagnosed I havent been offered the flu injection. I am currently on 400mg of hydroxychloroquine only. There is such confusion and I dont know what to do to be honest.
Thankfully I have been off due to my condition due to return 5th April. I'm hoping lupus will be specifically named so I have evidence to go to my employer with upon my return. I am office based open to the public but the counter has been closed since Wednesday.
Employers dont understand lupus and how serious it can be.
Yes, see my reply above. Rare diseases are in the 10s if not 100s. A complete list might miss people out. I thought the way it was worded was clever to include all flu jab patients basically. Can't believe some employers are being so selfish. I think however a lot are scared, for their own health and their businesses and finances etc and maybe in denial. But an imminent lock down might bring it home for them. x
You may have seen I've commented elsewhere a little while ago. We know that this is a big issue and we're doing what we can to address it through the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA). Yesterday we contacted Alex Sobel MP to ask him to table a question to parliament to clarify the position on conditions like lupus and he has agreed to do this for us.
This morning I heard a rumour from some of our partner charities that the NHS/Public Health England are due to be publishing a more comprehensive list of 'serious health conditions' soon.
Not normally one to post but wanted to say thank you for all your support. For the first time I rang one of your team, I was in such a state and the gentleman I spoke to just made me feel so much better. Reassured me I was not over reacting about self isolating. thank you to all of you!
Hi Niccigrace . Thank you so much for your comment. I'm glad our team was able to help. Please don't ever hesitate to get in touch if you need anything.
Wondered what your thoughts were on taking immunesuppresents drugs while this awful Cv19 is ongoing? I am at present taking 20mg of Leflunomide which obviously suppresses the immune system. Wondered if I should stop taking this until this settles down? Can’t go to my GP or get in contact with my Consultant 😱 My thoughts are,if our immune system is suppressed what hope have we of fighting this virus?
Hope this finds you well Paul, take care and stay safe 👍🏻
It is recommended that you DO NOT stop or reduce your lupus treatment as a precautionary measure. It is important to remember that if your lupus becomes active then this may also increase your risk of picking up infection. If you are concerned that you have developed symptoms of the coronavirus then please take advice from your rheumatologist regarding what medication is safe to continue.
It has mentioned Lupus specifically. It was with the original list given at the very beginning. I have several health issues and Lupus was the only one of mine mentioned. Depending where you live it suggests social distanceing. Look after yourself. I had MRSA and only just managed to survive it. Don't take any chances. My family are all worried as I am 69 years old and already been through one crises. I am supposed to attend hospital in April but I am going to postpone the operation on my kidney stones until summer as it was an emergency operation that led to MRSA.
We are advising those who are at increased risk of severe illness from coronavirus (COVID-19) to be particularly stringent in following social distancing measures.
This group includes those who are:
aged 70 or older (regardless of medical conditions)
under 70 with an underlying health condition listed below (ie anyone instructed to get a flu jab as an adult each year on medical grounds):
chronic (long-term) respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis
chronic heart disease, such as heart failure
chronic kidney disease
chronic liver disease, such as hepatitis
chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy
diabetes
problems with your spleen – for example, sickle cell disease or if you have had your spleen removed
a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets or chemotherapy
being seriously overweight (a body mass index (BMI) of 40 or above)
those who are pregnant
Note: there are some clinical conditions which put people at even higher risk of severe illness from COVID-19. If you are in this category, next week the NHS in England will directly contact you with advice the more stringent measures you should take in order to keep yourself and others safe. For now, you should rigorously follow the social distancing advice in full, outlined below.
People falling into this group are those who may be at particular risk due to complex health problems such as:
people who have received an organ transplant and remain on ongoing immunosuppression medication
people with cancer who are undergoing active chemotherapy or radiotherapy
people with cancers of the blood or bone marrow such as leukaemia who are at any stage of treatment
people with severe chest conditions such as cystic fibrosis or severe asthma (requiring hospital admissions or courses of steroid tablets)
people with severe diseases of body systems, such as severe kidney disease (dialysis)
This is the government’s original document. Lupus isn’t named. But it says those with weakened immune systems are covered. The only place I saw lupus actually named was in a Sky News Report online.
Hope I’ve helped, a little!
Don’t forget the LUPUS UK information is being updated as and when the government change advice.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
xxx
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