Hi all, hope you're all doing ok in this very long lockdown that seems to have become our new 'normal'.
To my surprise on Monday, I received a letter from respiratory medicine saying they are inviting me to undergo lung function tests in the coming weeks. On Tuesday, I had a phonecall from the same department and with an appointment for Monday. After a few calls and messages, a friend is picking me up to take me.
I don't know how I feel about this. I thought all outpatient appointments had been cancelled due to the pandemic surely carrying out lung function tests at this time would have an increased risk in infection transmission rates? It also makes no sense to not give B12 injections, but still carry out lung function tests.
Anyway, I am feeling nervous. I do not want to go near a hospital at this time, but am very grateful for the appointment, especially during this time. What should I expect? What tests are carried out and how?
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Ceri-NorthWales
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I've had three hospital appointments since everything shut down due to the virus, 1 at the endoscopy department, 1 CT scan with contrast and a blood test. All the staff are in their appropriate PPEs and the department's were as good as empty. Seen on time with no waiting and a empty waiting room. Pure bliss I wish all outpatients appointments were like this. There was more staff then patients on all three appointments.
It's hard not to worry about it and they wouldn't arrange a appointment if they had any concerns about possible infections to you or them for that matter.
I like your positove spin on it all! 😆 Does sound great with things being on time, although I never mind if the appt is late, if someone needs more time, they need it. Thank you and you too 💜
Off topic, but you might want to tell that to Public Health Wales who have stopped B12 injections and also the former GP practice I attended who have also stopped steroid and depo injections. They the practice manager also removed me from the patient list whilst in crisis, having a complete mental breakdown, still in shock and injured from a serious car crash a few days earlier and just a few hours after I had the police at my door at half 1 in the morning in concern for my welfare advising me to seek help from GP and at a time in the fight against a global pandemic when there was mass hysteria, fear and panic. GP didn't want it to happen. It was all the GP practice manager.
As a result, I am going to have to self administer depo injection next week with no training and it's in an awkward place and I have no sharp bin box.
Seriously, try to trust that the decisions are well thought out. They will change as more information becomes available. Try not to second guess. It is the doctor’s job to know when the risks out-weigh the benefits.
You need the lung function test. Just go. I live in NY where there are many covid cases. I still need to go in on Monday for a certain issue. Just trust your doctors.
I do trust in terms of the lung function tests. My reply to you was about what has happened recently that is nothing to do with me going for the lung function tests. It was about how appallingly I have been treated. And how it makes no sense to stop B12 injections, but still carry on with lung function tests.
I understand. If you want an explanation about the B 12 injections, I am sure someone would would be willing to explain. Just because it makes no sense to us does not mean it makes no sense. We live in a changed world.
No, that won't work, there are hundreds, if not thousands, of people that have contacted Public Health Wales. No one has had a reply. They ignore everyone whenever it is mentioned.
I would just assume B 12 injections are not worth the risk of contracting a life threatening illness. There are people on here who have to change protocols for IVIG treatment. As I said, it is a different world. It does not mean certain things are not important but that there is concern about exposing someone to a serious illness. These are tough decisions.
As I said, I would just trust my doctors. Really, what choice do you have?
On the procedures, the lung function tests I've had involve being with a single technician who guides you through and gives instructions. The main part of the tests is putting your mouth around a mouthpiece, filling your lungs with air and then blowing out till they are completely emptied. Repeat this several times. That's it. It's not painful or anything. Just lleaves you needing to have a few minutes rest afterwards.
They use slightly different settings for the machine each time so as to produce different measurements of things like total lung volume, oxygen transfer rate and so on. x
Hmmmm, not a full breath though, is it? Because I haven't been able to do that since a battle with pnuemonia and pluerisy in March and April 2019. It causes pain, as does holding my breath and I can't do long, slow controlled breathing, again since pneumonia.
Wisperit’s was very like mine - which took place in a closed glass cubicle with the technician and my friend in the room, but outside the cubicle. Any inability to take a deep breath or force out a good lung full is carefully noted. They need to measure capacity and force.
I took a friend because I expected to feel claustrophobic. She smiled reassuringly but admitted after that she expected my eyes to pop out when I was blowing hard.
In other rooms we could hear “Push! Push!” It wasn’t a labour ward ....
Thank you for your reply. The glass cubicle makes we wince with unease. I don't do tight spaces and I always have to know my exit, how to get out and run. And that is no matter where I am. I always have my exit plan.
Not liking the sound of these tests though. Blowing hard also causes pain. I can do a police breathliser though - it was protocol after the crash, I would never drink and drive. I don't even drink and never have.
Good! Is the glass cubicle necessary? I don't even like the sections in hospital wards with the curtain across each one.
I'll still go through with it because I know it's necessary and I want answer, too. Plus, I massively appreciate the appt at this time. I was fully prepared and expected to be waiting upto 12 months for it.
Do they give you the results there and then? Are you able to get the results?
If I remember correctly the cubicle was filled with something at some point to give a certain reading ( can’t remember what it was, but not at all noticeable).
I dreaded the whole thing after checking what was involved, hence asking my friend. The technician was very good though. Before the test started he was engaging in casual conversation that I realised later was to give him the “norm” pre-test.
I didn’t ever get any results because they were fine! This was all part of a thorough heart, lungs, kidney and other bits and pieces work up as I had a positive marker for systemic sclerosis in my blood. All was good enough. A slight heart murmur which is common, so negligible
As to the cubicle, there were other rooms without.
Phone the place to ask exactly what will be involved in your case. It may be very different to mine.
I know this is hard, but there is a point when we have to just trust our health care providers. It is as simple as that. There is so much unknown with this virus. We really cannot add much. In every area it is important to be humble. Let your doctors do the best they know how under very difficult circumstances.
If an individual feels the risk is too high, I think it is fine to respect those decisions. But doctors have to decide what patients with potentially compromised lung function need the test enough to outweigh the risks.
My niece, who has lupus, has a daughter who underwent a lumbar puncture a week ago in an attempt to diagnose MS. Was there a risk? Of course. But she has been on IV steroids twice to save her vision. The neurologist must have thought this was a risk he had to take. She does have MS. It was worth the risk to get her started on treatment.
Every case is different. Even before Covid there were many risks. We just didn’t talk about them as much.
My ling function test was as described by whisperit. If you can't breathe properly since your pneumonia then I'd suggest that the benefit of the test outweighs the risk of going. They need to look at your lungs.
It's good that you are getting B12 depo injections. Just not able to understand what you say about a sharps box? No prescriber I know would prescribe an injectable without an appropriate method of disposal? You certainly need a box.
I had the 6 loading B12 injections, but have been removed from GP list as detailed above. I have the depo injection, but will have to self administer it next week when it is due as I have zero access to primary care. Obviously this is dangerous to do as I have no training and I'm not ok'd to do it and it has to be given in a very awkward place. I have no sharp bin box to discard the needle.
If I was still in the GP patient list, I could just have a very quick appt with the nurse as usual. But that can't happen.
I don't understand how they can give you an injectable with no training. Where are they advising you to inject? If it's deep IM then you need to know what you are doing. Anyone who has to self injection needs training. They made me attend a course and I'd been injecting people for 15yrs!!
No healthcare professional knows I am self administering it though. I have to because I have no access to primary care as the GP practice manager removed me from the GP patient list whilst in crisis, going through a mental breakdown, a few days after a serious car crash still in shock and injured, at the start of this pandemic when there was mass hysteria, fear and panic.
That is why I have no choice but to self administer and why I have no sharps box.
I know the background as I've seen your posts? So you are already in possession of the vit b12 injections but don't have a box? I was presuming that the B12 injections were kept at the practice and if they had been prescribed to you to take away then you would have been prescribed a box.
The GP practice should provide you with a box if you ask. Sharps disposal is a public health matter.
I don't feel comfortable about you self administering without training or supervision of a medication. What have they said about registering with another practice? Or an appeal?
The GP practice can't offer me a sharp bins box because I am no longer on their patient list. They also have no idea that I will be self administering it.
I am not comfortable doing this either, but I have zero choice!
There is no appeal process. I have contacted MP, Welsh AM and Welsh Health Minister, all of which are as useful as the North Wales Healthboard, BCUHB. I have been in touch with managers within the healthboard that I have previously had contact with and nothing. I have also out in an official complaint with the Welsh Ombudsman. To remove someone from GP list in crisis and going through a mental breakdown and in a begining of a global.pandemic is very unprofessional. The GP completely disagreed with it. This is all the GP practice manager. If you want to know which one, it's The Laurels Surgery in Flint Health and Wellbeing Centre in Flintshire, North Wales.
I cannot register elsewhere as I am stranded in village I live and as each week goes by there are less and less buses, plus we are being told not to use public transport. I didn't slam on in the overtaking lane of a busy dual carriageway for fun! But I'm the one left picking up the pieces.
I also have zero trust in anyone, let alone the health profession and the GP practice manager has confirmed my worth - nothing. I know I am nothing and that proves it. If I say I trust a healthcare professional that is a huge compliment. There are three that I trust, a GP at that surgery, dermatologist at Glan Clwyd (and its a massive compliment me saying I trust anyone in that hospital!) and a neurologist form Liverpool Walton Centre. I cannot trust. I have no reason to. I have/had an IPFR form going through so I could access rheumatology care at a closer hospital just over the border as devolved NHS is a huge problem and BCUHB is in a huge mess - as I have found out in detriment to my own health. No idea what is happening now.
With everything that has gone in since March. Healthcare is the only situation I haven't been able to solve. Why? Because it is Wales and it is BCUHB. Public Health Wales and BCUHB cannot be trusted and both are in a hell of a mess.
If I had access to GP, I could just ride out the rest of this lockdown, but I don't. The two things that have caused the most devastation and disruption - the car crash and being removed from GP patient list. I'd I get PIP (going through mandatory reconsideration) that will go towards a car, as will a tax refund if I ever get it.
A new GP at the practice prescribed it just before I was removed from the list. He also prescribed a new medication for migraines as the first medication given proponal I only took for two days and didn't sleep at all. The neurologist gave clear instructions as to how to prescibe the second medication if the first didn't suite and tests to do before prescribing it. The new GP ignored this. I queried him about this. He said 'it's generally very safe to prescribe'. The tests was an ECG to check for heart arhythmia (spelling). As someone who has had both cardio and respiratory issues since pnuemonia in March and April 2019, I have my reservations. I have not started that medication. I am not comfortable taking new meds with no access to healthcare.
I have absolutely no idea what I am going to do with the needle from the depo. I have no safe way of disposing it. And yes, I am worried about doing it wrong and risks of infection etc, but what else can I do? It is mad that the GP practice manager has put me in this position. So much for havnig a duty of care.
I'm on mertazapine, too and have less than 4 weeks left. You are not supposed to stop it without drs consent and you can't just stop it. But I am in an impossible situation, so what else can I do?
In England, if a patient turned up to A&E asking to be injected with something like depo we weren't allowed to administer it because it wouldn't have been prescribed by a doctor from that dept, the patient would come under primary care and not emergency care so is unlikely to be seen by a doctor, and when it comes to the actual preparation we don't know its origin or how it has been stored etc.
This is only in my experience of working in ED for 15yrs. But there is no way that I would risk my pin by injecting it. Everywhere has different policies.
It's a good idea and I can see your logic. It's politics that get in the way.
I don't know how to help you Ceri, I wish I could. I was under the impression that in the UK you had a right to be registered with a GP and had a right to book in to A&E. You do not have the "right to demand treatment" if it is deemed unnecessary by a medical professional such as a GP but you should be registered somewhere.
Has your supportive former GP given you any idea of where you can get help?
Unfortunately the decent GP was off due to having to self isolate for the two weeks' upto when I was removed from the list, so unfortunately, she didn't have chance to 'check-in' before I was removed. She was phoning me every week to 'check-in' and see how I was up until then and she agreed to keep an eye on kidney and liver fnction whilst I don't have a rheumatologist. She was also chasing the IPFR form and they came back with the very unhelpful question of 'how much is this likely to cost?' Immmpossible question to answer. But its because BCUHB are known not to pay their bills.
Pretty sure I couldn't go to A+E for the depo as its dealt with at a primary care level. All I need is a very quick appt with a nurse to administer it, but I am in the impossible situation. I am literally stranded in this village as it is essential to have a car in this village. Even more so now as there are only 4 buses per day, Mon - Friday. As each week goes by there is one less bus and it only goes 3 miles down the road. I can still get to old GP practice and still trust that one GP. But as I said, I am in an impossible situation.
People are prescribed and keep their own B12 ampoules at home, we are then expected to make an appt for the treatment room, practice nurse etc as they are the ones doing the injection. No needles or syringes are supplied with the ampoules.
I think the injection in question bis a depo contraceptive injection so I don't know why that was given out as it is usually kept at the surgery. In my experience.
Depo injections including hormones for some cancer treatments are the same. People are given the prescriptions and then make arrangements for the injections.
Some clinics such family planning may well keep stocks but GP surgeries don’t. Very little kept in GP practices now including would dressings etc. I think it’s probably a combination of budgets and space.
Of course they should but is it the HCP’s responsibility to make sure that people with capacity don’t self inject?
There are an increasing number of injections/ depo’s/ hormone treatments etc on the market. The GP surgery can’t carry a stock of everything. It used to be that District Nurses carried all their patient supplies in their cars now patients get prescriptions for everything that is needed and keep it at home. Changed days.
I was asking a question as I didn't know why the medication was given without a sharps box but now it has been explained.
I wasn't suggesting that the DNs or surgeries carry every injectable stock. I was trying to understand the situation and possibly be of some help to Ceri.
When had mine done, it was also like a glass cubicle with a door in it. It must give more accurate results being in this enclosed area I think. I had difficulty getting the hang of it but the woman doing it showed me exactly what to do with the different mouth pieces. It was the blowing out I had difficulty doing. It took about half an hour, she didn’t give me the results and said they would be sent to the consultant. It wasn’t too bad a test. Best wishes
I've had several lung function tests and it's not a big deal - honest! Mine were done in a glass cubical within a room with only the technician and me there. The glass door to the cubical can be propped open if you wish (I think). It is just a case of breathing in - and then out (depending on the measurement being tested) - using a mouthpiece connected to a cylinder of air. The technician can and will stop the test at any time and for any reason, and then resume testing if you wish. The results are available very quickly, but the technician isn't allowed to tell you them as this is the remit of the consultant.
Really, you'll be fine! And it sounds as if your consultant needs those results before he can start appropriate treatment. Best wishes.
Thank you, I haven't actually had an appt with the consultant as yet. They said over the phonoe due to circumstances, they want to do the tests first. They have the notes from the referring consultant as well as the chest xray chest CT done on Oct and Nov 2019. I will ask to be copied into any resulting letters just for piece of mind.
I understand why you would be nervous about the test, but it just occurred to me that lung function tests would maybe be high priority during this particular pandemic. This is a time they don’t want to miss anything concerning someone’s lungs.
My niece with asthma is in good control but her doctor just put her back on Singulair. So lung issues are high priority now. And these clinics are probably set up to be very safe. All patients going anywhere near there will be carefully screened I bet. I was screened on the phone for an appointment and told my temperature would be take at the door of the office.
My temp goes up and down like a yoyo anyway, so not a great way of showing if I have symptoms or not. At A+E afer the car crash, when first tested it was 39C, and they kept checking it and each ear gave different readings and after some paracetomol it settled to between 37.2 and 37.7. Guessing that's normal for me 🤷♀️
Just hope things all come back clear, but also would be good to have answers. Who knows, I'll just wait and see what comes of it.
You should keep a log of your temperature. That is a problem with those of us with autoimmune disease. The elevated temperature could be from the disease, not the infection.
They ask about cough, shortness of breath and loss of smell too. If someone with lupus has a fever and needs a test, maybe a doctor intervenes to determine that the fever is likely the autoimmune disease. But this sure is hard. If you continue to have a fever, you might want to call the pulmonary clinic or wherever they do this test to tell them the situation. They might be able to get you tested in advance.
I had a problem of running a fever for weeks recently and had to quarantine even though the fever may have no longer been from the infection.
Stupidly I haven't got a thermometer though - I know I probably should, but up until the last 14 months, I have always been fit and well.
Shortness of breath is normal for me, just hope they ddon't see it as coronavirus related. I know I don't need a COVID-19 test. I haven't been anywhere, just for walks over the golf course. And plus, in Wales, you have to fit a very, very stringent criteria to get a test and they are only carrying out around 1000-1200 tests er day in the whole of Wales - and I can't get to a test centre either due to no transport.
I miss my car so much, but am utterly terrifed at the though of gettting back behind the wheel if I ever have the money to buy another car. The thought of driving a dual carriageway againa nd driving past where the accident happened, just shuts me down with fear.
As long as you don’t have a fever the day of the test, you should be fine. They are just so cautious everywhere. The only way they have to protect patients is to screen. They take temperatures and ask questions.
It should go okay. Just don’t drink hot tea before you go to the clinic!
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