It's now time to reflect on your experiences...

[AnnaHU]

Reflecting on your experiences with healthcare providers, what changes in interactions have you recognized since COVID-19? If you are comfortable, can you share an example(s) of instances when you have noticed this, have these been positive or negative changes, and how this has impacted you?

[kitnkaboodle]

All negative changes and experiences.

I almost died because I was turned away from the ER twice because they thought I “just had COVID.” I didn’t have COVID at all; instead, it was a rare brain disease called meningoencephalitis (cause unknown).

I should have been hospitalized for months and also transferred to in-patient rehab, but, due to COVID restrictions, I was pushed out of the hospital to my house within two weeks when I was still sick, and my family had to try to rehabilitate me on their own.

I did not receive as much out-patient rehab as I needed because of masking and distance requirements. I had trouble wearing a mask, and eventually just refused, due to my severe movement disorders and acquired hyperekplexia (extreme startle). I also couldn’t walk and needed hands-on assistance that many medical workers were unwilling to give because they wanted to hold distance.

I will share just one more example. Imagine leaving the hospital, half-dead, out of your mind, and being told that COVID is lurking everywhere, ready to infect and finally kill you and your family. I was unbelievably anxious and paranoid, and I believed the lie that the COVID vaccines would *prevent infection*. No, that was never true. Severity was reduced, sure, but transmission could not have been prevented via vaccine.

In the end, the least of us—the poor, the sick, the disabled—suffer(ed) most. And the government officials and politicians that promoted the shutdowns and fear-mongering just get another term and move on with their lives. Well, for me and all the other severely disabled individuals and their families (especially those who were disabled by the virus or the vaccine), there is no moving on.

[suryakaizen in reply to kitnkaboodle]

oh dear, kitnkaboodle thst was a horrible, horrible experience for you! So many illnesses came along with Covid and remained undiagnosed! I think both I and my daughter caught Covid twice - once at the start in 2020 and again the next year, going by the symptoms. We dared not get tests done or go to hospital because of the accounts we had read and heard of how hospitals in Indian cities were treating patients and families. Thankfully, it was not severe and we recovered in our own. How are you doing now? And I like your ID kitnkaboodle, it’s quirky!

[kitnkaboodle in reply to suryakaizen]

COVID didn’t cause my brain disease, but I’ve had COVID probably three times since becoming brain-injured and disabled, and all three times were well after original vaccination, when we had stopped wearing N95s regularly. The actual COVID was never severe for me, compared to my brain disease.

Thanks for your comment, and I’m glad to hear you and your daughter recovered alright!

And haha thanks, it’s based on a weird slang phrase, “the whole kit and caboodle,” meaning a lot of something and even more. And my real name starts with a ‘K’ so I used double ‘K’.

Take care,

Kit

[JOY2THEWORLD49 in reply to kitnkaboodle]

Hi

Even though the push of the government relaxes MASKS you kowand I know the advantages of still wearing a mask.

I still will wear it at crowded places.

Anti-vaccines have been a problem so relaxing masks is all about allowing these 'nuts' to have choice like others.

In NZ I have had 5 jabs. I have not had COVID or FLU. Masks help in flu as well.

As a ex Nurse I know the value of the COVID vaccines.

I've had a stroke diagnosing AF. Then when I underwent the Carotid Artery Scan I was diagnosed with possible Thyroid Cancer which was biopsied and diagnosed 2019 out Feb 2020. Declined RAI and Suppression.

almost 4 years I have had 3 yearly all clear scans.

Dont think about others re masks and jabs do prevention. You are vulnerable.

cheri JOY. 74. (NZ)

[kitnkaboodle in reply to JOY2THEWORLD49]

Masks, even N95s, don’t work as well as we hoped. This is a new scientific review of dozens of mask studies: cochranelibrary.com/web/coc...

[AussieNeil in reply to kitnkaboodle]

Cochrane Library has a very high reputation, but this mask study has come under criticism. The title is Physical interventions to interrupt or reduce the spread of respiratory viruses and the study attempts to answer the question of whether mask wearing mandates slow the spread of viruses, not whether they keep an individual safe. An analogy is whether fitting seat belts in cars reduces injuries in accidents. They do if you wear them all the time you are in the vehicle. Likewise a well fitted, tested N95/FFP2 or better mask should reduce an individual's risk of inhaling sufficient viral load to get ill, provided the individual keeps the mask on while in the presence of others shedding respiratory viruses.

[JOY2THEWORLD49 in reply to kitnkaboodle]

Hi

Thanx but I use 2.

So far keeping me protected.

cheri JOY 74 (NZ)

[Vonnegut in reply to kitnkaboodle]

So sad to read your story- it certainly puts my experience into perspective! Hope you are still able to get some enjoyment in your life despite all these horrors!

[Lilyrosemarie]

Still not being seen in person by an endocrinologist, only telephone consults. They are recommending very powerful medication without seeing me which scares me. They do not know or ask what other meds I'm on or what my other health issues are. I really don't know why they are not seeing patients F2F now. I saw a lovely hearing aid technician, I wore a mask so why can't an endocrinologist see me?

[Vonnegut in reply to Lilyrosemarie]

Just read this and as you wrote it 28 days ago, I do hope someone has seen sense and asked what other meds you are on etc by now!

[Lilyrosemarie in reply to Vonnegut]

No!!

[Vonnegut in reply to Lilyrosemarie]

So sorry to hear that. I have asked to be referred to see a gastroenterologist as advised by GUTS UK, because of the digestive problems which seem to have been caused by the drugs that keep my heart in order but my request has been ignored!

[john-boy-92]

It's been a mixed bag from health providers and Government Departments. In 2014 I had pulmonary toxicity secondary to dronedarone and amiodarone, that meant I was prescribed prednisolone that gave me high blood pressure. As I had AF but not anticoagulated, an ischaemic stroke in 2016 was in retrospect not a surprise. During COVID I was clinically exceptionally vulnerable. The stroke meant that I lost part of my peripheral vision and that led to the DVLA revoking my driving licence of penalty-free fifty years

The engagement policy by Bristol Health Partners about 18 months ago has been exceptional. It's a body comprising Bristol University, Bristol City Council, Health Providers, and ICB. Through that, I am a lived-experience participant in a Bristol University paper on clopidogeral, NICE papers and consultations, and in depth discussions about the Hyper Acute and Sub Acute Stroke Units that went live this May. I'm also a lived-experience participant for the Stroke Association, and that led me to comment on a draft for a new policy by the Department of Health and Social Care. I get to talk to second and third year medical students about my medical experiences: this year it was taking medical histories and strokes.

The downsides are being asked in hospital why my GP hadn't completed a ReSPECT form; the DVLA requiring a normal visual field to apply for a provisional disability assessment driving licence; Primary Care not screening for AF as there isn't a national policy awaiting the Cambridge University SAFER study to be published in five years time - the study participants are seventy years of age and older. Bristol and the surrounding area has wonderful new facilities for stroke, but without screeing for undiagnosed AF, we are not reducing the number of strokes.

To summarise: up to 18 months ago, if you had a stroke you were the grey non-person. That has changed and I'm truly grateful to Bristol Health Partners (especially Heidi and Claire), the Stroke Association and the Department of Health and Social Care. For the DVLA and, the absence of screening for undiagnosed AF, your attitude and policies are out of date.

[Euro]

I have had very few positive experiences since COVID - those that stand out are the ease with which I could get my repeat prescriptions - over the phone and delivered to my door by the pharmacy the next day. Now we're back to ticking the box and dropping it off at the surgery or going online and ordering what you need and doing that no more than 5 but at least 3 working days before your meds run out (relies too much on me being '0K' on at least one of the two days - rarely happens before I run out). Also, it was useful for me to have some interactions online via video conference or over the phone.

I had a couple more physiotherapy sessions and had just started hydrotherapy when the first lockdown came along - both cancelled. As far as I know hydrotherapy has not restarted for anyone other than postoperative recovery patients. I have asked for physiotherapy for a compressed nerve in my neck which, together with tennis and golfers elbow is causing a lot of pain in from my left shoulder down to my fingers and is rendering the whole limb almost completely useless. I was offered steroid injections into my elbow (no thanks) instead. About 10 years ago a few sessions of physio, manipulating my neck and shoulder, was all it took to give me lasting relief and I am not sure why that is not available now (could be COVID related?).

I was also nearing the top of a long waiting list for an assessment for ADHD / ASD - the assessment sevice in my area had a 3-year wait for adult assessment when I joined that list about 2 plus years before the first lockdown early 2020. By the time they started assessments again, the waiting list had grown to 5+ years so they decided to get help from a neighbouring area who held triage appointments to decide who got assessed. The 'pre-assessment' asssessment appointment letter was 6 pages long - 5 of them about COVID this and COVID that but nothing at all about what to expect during the appointment. I was told on the way down the corridor to the consulting room that a student would be present, did I mind? Holding back on the expletives I would like to add, what a stupid question! My anxiety immediately went from an 8/10 to 10/10 and I couldn't speak. I nooded my head (to me, that means YES - a nod always means YES!). Interpretation: YES I mind! I do not feel comfartable with one person pre-assessing me for the right to a full assessment, I certainly don't need someone else in the room 'observing' me - I am already anxious enough by being in an unfamiliar place and being 'tested' by someone who I have never met before for them to decide if I fit with whatever criteria they have decided meets the standard for an assessment to be granted. His interpreation: either no, I don't mind or yes, that's okay . The assessment went ahead with the student staring at me, making notes and staring again. I felt so completely overwhelmed, I cried through most of the 10 minute 'interview'. I was asked a number of questions relating to the typical male ASD traits - never mind I'm a female in my 50's with plenty of practice masking - particularly when forced into an incredibly uncomfortable social situation, my needs ignored. I felt utterly unable to express myself, being cut off when I tried to expand on the 'please answer Yes or No' questions, because neither was a truthfull answer to the 17 questions asked. This was about a year ago. The report was sent to my GP (not me). I managed to get a copy through a subject access request and in it, it suggests I should be referred back to the mental health team and my GP should discuss the report with me. None of that has happend. Furious doesn't sufficiently reflect how I feel about all of this.

Pre Covid, there was a mess up with a rheumatology referral. I was referred towards the end of 2018 and my GP practice didn't respond to repeated requests for additional information from the rheumatology department so they could allocate me to the appropriate consultant - the GP practice deny having received any request. Rhematology eventually cancelled my referral in August 2019 - I didn't know because, though I received a letter telling me my referral had been cancelled, it didn't say which referral - I had another two pending at the time and the booking service couldn't tell me which of the three was cancelled and told me to speak to my GP. I asked my GP to help me and all they could do is give me the patient booking service number - around and around in circles! It wasn't until I got the other two appointments, one a few months later (for the physiotherapy mentioned above) and much later, the other for the pre-assessment assessment interview that I knew it was rheumatology which had been cancelled - given that the latter both had extremely long waiting lists and COVID restrictions, I hadn't followed up on either. January 2022, I spoke to my GP about being referred again because my symptoms were getting more debilitating. I was referred out of area (in part due to the mess with the previous referral, but also as the local rheumatology department had major staff shortages and the waiting list for new patients was shocking). Six months later, I saw the consultant and was told there were definite signs of deformity, probably rheumatoid arthritis, in both my hands and feet and that he would like to see x-rays of both, including wrist and ankle joints and that I would be notified by post of my appointment for them - it would be there (rather than my local hospital, because he wouldn't be able to access the images from there). Depending on what he found, I may be called back, or discharged back to my GP with a treatment plan. November last year, I asked my GP surgery to follow up. I was told to be patient and wait, there's staff shortages due to COVID, just wait for the appointment letter! It was March before I dared to ask again. This time, the (different) receptionist looked at my records - the referral was refused in August 2022 - a whole 3 months before I was told to (expletive) wait!! The reason - they could not take out of area referrals due to their own backlog. I was not told, not subsequently referred in area and neither do I have the heart to start the whole process (or the guts to ask) again. My symptoms started to become difficult to cope with in 2014 - multiple trial and error with pain meds and eventually, almost 5 years later, the referral to rheumatology in 2018. Now, 10 years later, I still have no definite diagnosis, treatment plan, relief from the pain or much hope left.

This isn't just COVID or post-COVID - some of the problems I experienced with the system happend before we even knew about COVID, but I think it has contributed to the ongoing issues. For most of the period since the pandemic began, I've got the sense 'if it's not COVID, go away, if it is COVID, stay away.

[JOY2THEWORLD49]

Hi

In NZ it is more difficult to get an appointment. I just turned up!

An operation last March was full of COVID THIS and although not told to allow an extra hour to get tested prior to that day's operation, the surgeon was annoyed that the staff did not have me ready for 12 midday.

Still waiting for my right shoulder to be done. ACC manages that. Waiting from Sept 2020 and another but fall in August 2021.

cheri JOY. 74. (NZ)

[Teaching]

I have not noticed any significant changes in interactions since COVID 19. The only change I've noticed mostly is in Telemedicine. People can comfortably see doctors online without much stress. Online activities have greatly improved in medicine.

[Kit10]

Covid has been used as an excuse for absolutely everything that goes wrong even if it's nothing to do with Covid really.

[BarrySimpson]

At the medical practice where I am registered, patient access has deteriorated since Covid. Access must be close to impossible for many patients, especially those who are ill, i.e. those likely to need it most.

I am a paralysed with a spinal injury. District nurses from the practice visit me on alternate days. This morning two of them were saying they never see most of the medical practitioners and do not even know whether they still work there.

Here in the UK, shortage of hospital beds is a perpetual issue. Am I the only one who suspects that sending patients to hospital is being used by some general practitioners as a way of unloading their work and responsibilities? I have been sent to hospital several times and never had or needed any treatment. Now I simply refuse to go.

I spent nearly all my working life as a university teacher. I noticed a remarkable decline in the quality of work achieved by students despite a big increase in entry grades i.e. grade inflation in 'A' levels (the entry qualifications). I suspect we are now experiencing the consequences of this in the quality of medical graduates.

[HealthStarDust]

Health care providers are taking away the patients choice of how to receive care eg face to face instead of telephone. Some even send you a text without ever engaging with you over your health problem inappropriately.

The power imbalance has tilted ever more in the health care providers favour. Without face to face interactions health care providers seem more likely to dictate to you and ignore you over all aspects of your care!

[Filicatlasy]

I haven’t seen any of my specialists or my GP face to face since Covid, lots of telephone consultations and lots of increases in medication. I have had Covid 5 times and during the last 3 years all of my symptoms, heart disease, incontinence, mobility, autoimmune diseases like Hashimoto’s, pernicious anaemia, hyper parathyroid, sarcoidosis, coeliac have got worse. I have long Covid but no treatment. I am depressed by the whole approach. There is no communication between the doctors.