Are folks still getting their “routine... - British Liver Trust

British Liver Trust

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Are folks still getting their “routine” 6 monthly monitoring blood tests and US scans?

Lantana100 profile image
8 Replies

My husband was diagnosed with cirrhosis in 2019 - initially decompensated but he thankfully became compensated pretty quickly. Up till now, and throughout the worst of Covid, he was getting his routine blood tests and US scans plus a follow up with his consultant but his November tests have not been scheduled yet. He was also due to have an endoscopy in November. We have no way of getting in touch with his consultant/team other than through a general email box which does not give replies. His secretary’s phone goes unanswered. I’m presuming this is due to Covid but wondering what other’s experiences are currently like?

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Lantana100
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8 Replies
Lucky76 profile image
Lucky76

I was diagnosed with liver disease after a month in hospital in August 2019, I had one fibroscan and consultation last Jan 2020 and have had NOTHING at all since! I have phoned and phoned only to be told 'I'm on the waiting list' until I finally got an appointment with my consultant just before xmas. Due to have an MRI scan today but it's been a whole year which I find ridiculous since they told me I as lucky I wasn't dead in hospital but then no bloods, no monitoring, nothing. I too left messages on the elusive sectretary's answer phone which weren't replied to, I can only assume that it is covid (if I hadn't been persistent with phoning I think I would still be on the list with no sign of an appointment a year later) but it's hardly sufficient monitoring of a health condition!! Good luck with getting through x

AyrshireK profile image
AyrshireK

My hubby has had his ultrasound scans right through the pandemic plus a follow up MRI to identify some abnormalities and then an ERCP because it was also found he had gall stones lodged in his bile duct. Plus his annual endoscopies in 2020 & 2021.

He hasn't had a consultation since January 2020 and the only bloods he's had have been whilst he was an in patient for ERCP and one set I managed to get GP surgery to do. I am actually going to contact secretary this week to ensure his ultrasound is ordered (due February) and local consultant isn't the best at pre-booking.

A lot of peoples routine aftercare is definitely going downhill as doctors and other clinicians have been seconded to covid care.

Katie

Hi,

Thank you for your post. If there is no response via email or the medical secretary, we would suggest to consider contacting PALS department at the hospital. If you are based in England then each NHS Trust has one. ( if you are in Wales or Scotland let me know and I can post details to the patient support there)

The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. Here is the NHS link;

nhs.uk/nhs-services/hospita...

You can reach the PALS departments via hospital switchboard. Hopefully they can reach your husbands medical team, it is very important he has his tests.

Best wishes.

deanw41 profile image
deanw41

Yes I’ve just had all mine done.

user2021a profile image
user2021a

I’ve had blood tests and scans done, some a bit later than 6 months but no more than 8 months between. Have blood tests done 4 weekly throughout lockdowns although my liver condition caused by blocked veins because of clotting disorder. Your GP can arrange blood tests and ask them to chase consultants or see if they can request ultrasound?

Lantana100 profile image
Lantana100

Thank you all for responding. I will send another email to the GI general inbox next week and if we are not contacted by the end of the month I will chase either through our GP (who is also out of the loop and never gets our results unless we physically manage to get them from the consultant - not easy!!! - as the GP practice and the hospital are in different trusts) or through the hospital PALS as suggested.

Hi

I have had my bloods done every 6 weeks as normal and sometimes repeated if needed, also had my us scans as normal and see my hepatologist every 3 months. Also had a TTE scan and have a CT scan booked for this week, the only one I’ve been waiting for since March is a Dexa scan. Hope your husbands test get sorted soon for him.

Ubwa profile image
Ubwa

Currently am seeing the NHS and Heptologist privately quarterly

Have bloods teken roughly that often too although sooner if I feel rough, luckily I can have then taken at home and drop them in to the lab

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