Skip to main content
Menu
Institute Community Reporter
User account menu
About Us
Log in
Facebook
Twitter
Youtube
Main navigation
Home
Explore
Reporters
Report transcript in: The challenge of accessing support for long covid
Please Report the Errrors?
right. Um,
so
I wanted to talk about, um
my experience within
the community. Uh, healthcare provision. Um,
immediately a about A after coming back from hospital, Um,
in hospital. Uh, I've been taken in, uh, in April, uh, 22nd of April,
uh, by ambulance. Um, I was immediately put on a ventilator for about nine days,
and I spent a total of 16 days in hospital. So I was in that first wave
when I left hospital.
Um,
obviously, I was in a bad way. Um,
in terms of I've lost two stone in weight.
Um,
I was struggling to walk, and mentally,
um,
I had a number of issues. Um,
but if I summed it up as broadly feeling like I was going mad,
um, that would be my
non healthcare view.
Um, I also want to say,
you know,
have an absolute debt to many people in the health care, uh,
trade profession. Call it what you will sector.
Um, and I've met many wonderful people who have gone out of their way to help me. So
I want to say all that upfront, and I also want to say that what I'm about to say
is about.
I'd like everybody to hear it through the lens
of process and not through me trying to criticise
an individual or a specific entity because it's
it's not what I'm trying to achieve.
Um,
so my journey starts with
coming back,
um,
from hospital.
Um,
and
I was told
that the people looking after me would be effectively my local GP.
That was on the 18th of April. Um
uh,
I heard nothing from anyone.
Um,
couple of things happened.
I guess one of the things that happened was I genuinely thought I was going mad.
Um, so I rang my doctors and the response to
them knowing that I've been in IC u
um, and someone crying down the phone to you is,
Well, that's quite normal. Uh, once you've left, um, critical care.
So that was the first intervention I had.
How how did that?
How did that make you feel?
Well, in the moment,
it was nice to hear because,
um, in the moment, if you genuinely think you're going mad,
it's none of the things that you could previously do.
And in my case, that consisted of setting up and running my own business.
with somewhere between
depending on the season. 60 to 90 employees.
If you go from that to,
um,
you can't understand someone telling you where the washing is.
Um,
and you're unable to achieve anything out of your brain that
up,
so to speak, in the moment it was
that's good news.
But afterwards, it was just anger because,
you know,
just give me some help telling me
it's time to normal
in three minutes.
So So that was how it made me feel.
Um,
so
So
cut a long story short.
I wait until the 12th of May,
uh, to contact my, uh, GP
and I I said
I am standing trying to help me, um, and to support me.
And I was told that actually there was no support,
So I asked
why,
and they said they didn't know anything about covid.
Um,
I went on to say
that
a few bits. Really? Um,
I was unable to use computers or websites.
Um,
I was unable to remember anything
to plan anything and actually, having done done some reading,
I felt I was suffering from post intensive care syndrome, and that wasn't new.
And actually, the covid bit might be overlaying that, but was irrelevant.
How? How did that?
I know. I know you. I know you've spent that time in in IC u But how did that?
How did that affect you? Do you think,
um
what? Being in IC U.
Yeah,
well, you lose so physically, you lose 3% of your muscle approximately for every day
that you're in IC u in a bed. Uh, and in in hospital,
so
and having the joy of running a group means that I'm able to compare myself to others.
I was one of the few people that could actually walk up the stairs,
but how it affected me
was the ways that are utterly known by people in that sector.
It's called post intensive care syndrome.
So on a physical basis, um,
your muscles are shot, so you're gonna have to build that over months, if not years.
Um,
extreme fatigue and fatigue is not something
that is understood by most people because
people think fatigue is how they feel after running around the block or something.
It's actually where you can't, um,
get off the sofa to do anything, regardless of how important it is.
Your brain doesn't work. And what do I mean by that? It means
you don't understand what's being told to you.
Um, you can't retrieve basic information or words.
Um, it means you can't deal with dividing your attention. So,
uh, in my case, it meant that I was intolerant to noise.
Any background noise at all had a severe effect on me.
Um,
I couldn't Do
you know, I've come from running a business,
being pretty proficient in I t.
To
not being able to negotiate the
website. So those are,
um depression, anxiety. All those things. All part of,
uh, this syndrome called post intensive care syndrome
and and do those things. Still are those things still impacting you
Now?
I've gone from driving 40,000 miles a year to not
going to drive for more than half an hour.
For example,
Uh, I still have problem multitasking,
but the bit that I wanted to talk about
today was
the care that I didn't receive from
healthcare.
So am I all right to carry on with that?
Yeah. Go for it.
Yeah.
So may the 12th contact the doctor,
So I think I'm going mad,
so I can't use computers
say that
I can't plan anything,
and they tell me they've not been told about covid.
They won't be able to support me.
Um,
they suggested I had some low level psychological support.
I said to them, Look, you you're talking about covid.
But actually,
this isn't about covid. This is about just being in intensive care.
And by the way, I'll send you the nice guidelines on how to look after people like me.
Um,
I said I couldn't concentrate or I couldn't comprehend.
And remembering stuff was difficult.
So the doctor, after five minutes of listening to these issues I was having, said
she would send me a link
to get some psychological support. Um, I would then have to fill in.
And that's a standard link for accessing any psychological support for anyone.
So you go through
a website to
get in the queue and
input a load of data.
Uh,
haven't told her
plan, Didn't
remember anything.
She told me, um,
we should catch up in two or three weeks. I said, Great. Will you ring me? She said no.
You need to contact us.
I said Great. Can I phone? You
said no. You can't phone us. You have to go through my GP website
to book an appointment.
So having told her
that I can't comprehend websites, I can't plan, I forget everything.
The solution was here's at least two websites or systems that you should follow.
Oh, and by the way, we manage
to do that in a month's time.
I was just absolutely amazed I
I Afterwards I felt
if if they running my business,
someone at a really low grade had said to me,
they can't do anything because they don't understand what's going on,
I would explain to them they need to understand what's going on
and
take some responsibility,
so to hear it from a highly paid GP.
But by May the 12th, they don't really understand about anything about covid or IC. U
and I was told to do anything. It
was just beyond my
belief. And,
you know, I don't know if I caught it on a bad day.
But
when all the systems are now moving towards an online process
and there are people trying out to help
saying I can't do this
just incredible, what an incredible response. Um,
I decided to complain to the GP because I that was the first step,
so to complain, to the practise.
So
in my world of business, if you lodge a complaint as an employee,
ultimately it goes to someone who's not your line manager.
In the case of the G P's practise,
the person investigating whether I'd had shoddy service was actually the GP
that I was complaining about.
Um,
I was feeling anxious and upset anyway, so I decided, um,
you know,
that was a waste of time.
I didn't want to swap GPS because
I just felt that,
you know, why would I go somewhere else to get even less understanding?
So I retracted my complaint.
Um,
I then went on to complaints and C QC and that's a whole different story.
Um, and yet another story of no one being interested
people saying it's nothing to do with them
people telling you there are five or six organisations that
maybe you could contact if you had a complaint,
all of which are online.
So
So I guess my request to anyone listening to this is,
you know,
looking at the processes,
look at your processes and, um,
check whether the processes you think you have are
the ones that you've actually got in real life because
the effect that it's had on me is
I would only absolutely contact my GP now as a final last resort
because,
right,
what are they going to do?
That's my story
just
in in terms of that response and in terms of what
might have made a difference for you, I mean,
I I'm I'm sensing that it was a very not very human experience that you
you've
had through through this. What? What do you think could have made a difference
to you?
Well,
you say you were battling against the bigger thing.
Um
what? So the things I would have liked
would would be able to ring my surgery to say, I'm really struggling.
Can you give me an exemption
when I try to do that?
The response from the
When you were in the surgery, there's a recorded doctor's voice which says,
Yeah, guess what? It's all online now.
And when you get through to the, um, woman on the desk, she says, Didn't you hear?
Didn't you hear the, um,
recording,
you say? Yeah, but I'm really struggling, and then they say, Well,
if you're struggling, just get someone else to do it for you.
So it isn't just, um,
a human having a bad day.
You know,
I happen to have the misfortune
of
going into IC u Just at a time when my GP
was implementing ask my GP as a assistant and in
implementing that they're obviously having conversations with their staff about
who not to let through the net.
So
it was a systemic thing
because
their reception desk staff weren't interested.
They were just gonna apply the system, which was very simple.
You ask my GP or get somebody else to do it for you, And don't come over here
making out that you
you can't do it.
So,
yeah,
it's the dumbing down of service and it's
the the the systems are.
The way they get implemented
is to Deum
it. The the intent is to dehumanise by their nature. That's that's the intent,
and the only way you get around that
is later on. I spoke to another GP in that service
who very kindly said, Well,
we can flag on your record
that you can
in
so her having said that, I rang in and I said, I've spoken to the doctor She said,
You can flag me into your records
She goes, Well, you know, on our records as being flagged.
I said, OK, can I speak to the GP then to get flagged?
And she said, Well,
no, you need to go ask my GP to make that request
So the computer
says No,
and I'm I'm laughing, but it's just
and I'm not laughing, really. It's just
just incredible.
Um,
gosh,
yeah, it's really hard. Is there anything else you do want to to say at the minute or
no other than my request to change when people hear my story
is this is the thing about how processes
get implemented in
surgeries
by people.
And
you know, if you train your staff
to have a binary answer,
then you're gonna be delivering
a dehumanised
system. And what you need to check is how it actually works,
not what your staff telling you in terms of how it's working.
And if you've got a complaints procedure,
see if you're complaining to me.
I know I'm ahead of a guy,
so if you tell me I'm not ahead of a guy And I'm
the person arbitrating over whether I'm ahead of a guy or not.
Guess what? Answer I'm gonna come up with.
So try and have a complaint system. That sort of works as well. Might be just an idea.
Uh, is not revolutionary, And, uh, it's been out there in in industry for decades,
and, um, it might just be worth the
consideration.
Up-big
Home
Explore
Reporters
About Us
Log in
Facebook
Twitter
Youtube