Following consultation with leading UK lupus clinicians we have received a number of reports of people with lupus being admitted to hospital needing potentially preventable treatment because they didn't seek earlier help from their medical team.
If you are experiencing a worsening of symptoms, please don't suffer in silence!
Precautionary measures are in place to help protect you from contracting COVID-19 when you attend appointments.
The NHS is there for all. If you need it use it. Don’t wait.
My Dad was very ill at the weekend and is now in hospital. I didn’t recognise the paramedic who was in all the Covid gear. He was brilliant; then it clicked he was my neighbour Martin! Dad is still not well; the hospital is brilliant. Best wishes Kevin
So sorry to hear that your dad's so unwell again Kevin. Thinking of you all x
Sorry to hear your dad's unwell, Kevin. I hope he gets better soon. Take care x
Sorry, not having s very successful interaction with my gp. Trying to get hrlp, they just ssy government guidelines ??? Im resonably stable thankfully, but cant get any help
Hi neicer . I'm sorry to hear you were having trouble with your GP. Was there something in particular you were seeking help with? It may be worth trying your rheumatology helpline now that services are re-opening.
Thank you Paul. Much much appreciated. It is difficult to get help unless it is emergency. The system abandoned its existing patients to make room for new ones due to Covid19. We are asked to speak to applications on our phones or applications on hospital systems. There are no longer people out there whom we can speak to and ask help. They look at us as numbers. Sadly. Who do I ask help? Which number or name? Which doctor is there to help me? I am in the hands of administrators who sees me as a phone call or email. They are busy and they are busy and they are busy. Sad reality. And on top of our illnesses, to fight to get heard in a system which is not listening to you is tiring. We suffer pain everyday, we suffer depression and we fight everyday. I can purchase my medication behind the counter for £150 I have been told, last week. What choice do I have? I will have to buy it, because it is a choice of being in pain and being in hospital verses my credit card. I rather be my credit card. Only because I can, what about those who can not? Who should we contact and if their service is not available, where should they complain other than their keyboard, like what I am doing since two months? This is IF their fingers are not swollen or not in pain. Please dont get me wrong, my ranting is not to you, it is to the system and those who does not fulfil their duty of care and I happened to come across alot of them in the last few months. Lupus emergency line with direct access to doctors would help to express our story. From one doctor to another system rather than us engaging with administrators could help. A doctor would speak another doctors language and convince them that we are not mad people, we are people with CONFIRMED long term illness and we should be treated like one. With best regards, Lx
Hi LalSD ,
I'm so sorry to hear that you have had such a battle to try and get any contact with your medical team.
How recently did you last try them? It may be worth trying your rheumatology helpline again now that services are re-opening. If they have a specialist nurse then I'd recommend trying to speak to them and see whether they have their own dedicated helpline.
The medication that you bought over the counter; was that because you were unable to get a prescription issued?
We're feeding back reports like yours as clinicians and policymakers work on re-opening more of the NHS services and provide care in a 'post-COVID' system. Your comments here echo what was said in the recent RAIRDA survey, for which we'll be publishing a report very soon.
Dear Paul, Yes, the medication I bought was because I could not get mine/our rightful medication. I bought it because I felt I have no other choice. I will certainly try your helpline. It seems that the only thing I do lately is keep trying everyday. Thank you for your note and assurance..With love, Lxx
By the way you are the best Paul. Please please please do not take my comments personal, you are doing a great job. Great care and detail goes on this site and you make it happen. Lx Thank you.
Hi Paul, thank you for this. Just a bit if feedback.....
I am managing (ish) at the moment but should have had an appointment over the telephone with my Rheumatologist on 6th April. I still haven't had it. I have had one phone call of apology and one email of apology. I have been told that it could happen any day if the week and even at the weekend in an evening. Well, I'm hardly going anywhere!
The same thing has happened with my immunologist and infectious diseases Consultant. Am I do really need to speak to them as it's my immune deficiency that is keeping me stuck at home.
I have made a lot of attempts to contact both teams but no joy.
Fortunately there is no emergency but it's not as easy to get hold of my team's as they are making out. I appreciate that they are busy but by now a system should be in place where they are catching up with patients, especially as I know that there are 400 closed beds in my local hospital.
Hopefully the calls will come soon.
Thank you
HT 🌷
Thank you for sharing happytulip . This is the feedback that I have shared with the consultants I've been speaking to. Unfortunately there seems to be a significant inequality in the provision of healthcare support throughout the lockdown. In some cases this may be due to localised spikes of COVID-19 cases requiring rheumatology staff to be reallocated.
I hope that your consultants sort out your telephone appointments soon. Please keep me updated.
Hope you sort it out ht as its important you get those follow up calls. I hope when they do phone you tell them how difficult its been to contact them as they don't realise what its like being on this side of the fence as it were!. They think they're very accessible when sometimes there not!.
Hope you hear soon. Xx
I’m not someone who calls for help and tend to sit symptoms out until my next outpatient appointment in the hope they go away or improve. My last appointment was November. The one due in February was postponed to May. That was cancelled and I’ve now had one sent for next February. So I will have gone from a 3-4 month interval between appointments to 15 months.
I’m still having 3 monthly blood tests, and the lupus nurse rang me very briefly to check I was shielding as per the letter and to give me a helpline number. But the consequences of not being followed up normally could be huge if this is what is happening to all of our lupus community.
Hi Cathyan ,
Thank you for sharing your experiences. I'm sorry to hear that you have so long between your appointments now due to this. I'm glad that your lupus nurse was in touch and provided their helpline number though. I'm sure if you need an earlier appointment, if you speak to them they'll do their very best to get something arranged.
The response and care provided by rheumatology departments across the UK seems to be very inconsistent. Some people seem to have been supported very well, whilst others have been left effectively abandoned. We'll be doing what we can to address this.
Thank you for your support Paul. I may try to get an earlier appointment.
I think my rheumatology department have tried to communicate that we can contact them if we have problems. However outpatient appointments are always scarce, meaning that any cancellations generally resulted in another 3 month delay in the normal way of things; thus losing 6 months of clinics creates an impossible situation for them. I’m sorry for them, and sorry for us! Thank you for what you are doing behind the scenes.
Is there any idea when things will get back to normal with hospitals? I’m waiting to see a rheumatologist, haven’t been diagnosed with anything yet but getting pretty desperate. GP says there’s nothing they can do until things open back up again. Have been close to going to A & E but things calmed down just in time ☹️. I’m getting very annoyed seeing everyone on the telly saying the NHS is open when it clearly isn’t, I’m just being left to wing it on a hope and a prayer and told to take ibuprofen as if that hadn’t occured to me.
Hi Parsley23 ,
The extent of available services will vary regionally depending on how impacted they were by the virus. Things appear to be improving quite quickly at the moment. Have you had an appointment for a rheumatology consultation? Do you have the helpline number for your rheumatology department? If not, it may be worth speaking to your GP to see if they can chase things up for you.
I think I’ll be ok I just get a little overwhelmed at times. I’ve been seeing neurologists so far as it started with tingling and numbness in my extremeties, then a pregnancy where my symptoms all but disappeared has confused the matter further. My neurology appointment that was booked to hit six months postpartum (when he said he imagined everything might be back with a vengeance, correct you were sir!) was cancelled due to covid to be rebooked at some point and the GP says they will put in the referral to a rheumatologist as soon as they can. I guess it’s just a waiting game for me now - though I get the impression getting diagnosed is a bit of a rigmarole for most people regardless of a global pandemic, right? I know I can always go to A&E if I need to.
Thank you for your help!
The NHS is open....I had to take my mum into A&E this week and the UHNM were fabulous and all precautions taken to protect me and my mum from COVID 19. Unfortunately she has been admitted (non COVID related) and we are unable to visit but they ring us twice a day to update us and we can telephone her and FaceTime her. Hopefully other areas are as accessible and approachable.
Paul- I have received a box of HCQ. 60 tablets. I am most grateful for this BUT what would you say that the nurse of this GP practice reduced my dose to ONE TABLET A DAY? Without consulting with me or checking to see how I was doing or checking it with the doctor. Another random entitlement!!!! She feels she can. I requested my usual dose, 400mg a day.
'We are going to help you but we are not going to help you'. playing with people's life! Please make it part of your research paper.
An illness like Lupus is not a game or a simple cold or flu. Lupus kills and reduces our quality of life so much that we can not shower, walk, have breakfast or even sleep sometimes. Please advice what should I do? The issue here is not the shortage of medication, or covid19, or accessibility, the issue is the GP practice refusing to honour their duty of care, inclusive of its doctors and nurses... God help us!!!
Hi LalSD ,
Do you know whether the reduction of dose was deliberate by the nurse or if it was an accident? I'd be shocked if the nurse had taken it upon themselves to alter your treatment regimen in this way.
If possible, try speaking to your doctor to confirm your dose hasn't changed and that you should stick with 400mg a day.
Hi Paul, I am hoping it is an accident but given the care (3-4 years) I received and three very reliable doctor's departure on different occasions, it seems that this practice operates with very very poor service. When a surgery calls you, instead of just stating they are calling from the surgery they MUST introduce themselves too. I did not pick this up at the time as i was concerned of not getting my medication and letter but I now know what went wrong. I kept insisting on something I am entitled to and she kept on refusing and making remarks etc etc. A nurse is not qualified to understand our illness nor should be left in charge.
By the way I am grateful for the whole board across tolerating my communication but rest assured it is not just my own matter, it is a general matter and it should be addressed.
My experience with the lock down could not have been worse and left me mentally paralysed and depressed, physically sick and in pain with inflammation. Love, Lxx
I can so agree with this brilliant post Paul. I've had to ask for help from three of my specialists for my health conditions flaring !. I've been treated quickly as I'm shielded at home, we are a priority,and letters have arrived at my gp surgery so fast for new medication to be prescribed. Nurse helplines have been really helpful and in the case of Gastroenterology they will give me a clinic follow up apt in a months time to see how I am. I've also been told to use the helplines when I need to. This is a good time to access care as they are less busy so have more time to think about us more complex patients. Also there is less of a wait for diagnostic testing too. I felt I was being a nuisance and bothering them but I couldn't have been treated better. Its true if we leave things they will only worsen and then we're more of a burden for the NHS so we must seek advice. This lockdown is stressful enough without worrying about our health flaring on top.
I hope my reply is encouraging for you to do this when needed.X
I found my rheumatologist to still be very accessible and I have had answers to emails and a video review with onward referrals and change in medications etc.
However, I can’t say the same for the GP who was my first port of call when my joints flared up badly. I was made to feel like a nuisance,after a bit of sighing he said he would contact rheumatology and never did meaning there was a delay in getting the right treatment.
I thought this newsletter from the BMA might be of interest. It’s highlighting the concerns of clinicians over how the NHS is going to get to grips with the backlog. No answers, unfortunately. Doesn’t tell us anything we weren’t already worrying about, mind you. bma.org.uk/news-and-opinion...
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