I'm just wondering why the Perspectum Diagnostics LiverMultiScan developed in Oxford is not yet being widely used in NHS hospitals? The USA has grabbed this amazing software with both hands but over here I think Southampton have it, Birmingham has used it for trials and Derriford in Plymouth are currently using it for NAFLD trials.
I have AIH and unlike other liver diseases, LFT blood tests are not an accurate way of monitoring this. You can have totally normal bloods but the disease can still be actively causing damage.
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PSouthWest
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Proprietary software costs money. Existing accurate measures of liver health exist. For one to usurp the other there needs to be a value for money assessment. The US has a primarily private system and each hospital (broadly) is free to choose equipment as they see fit.
Perspectum Diagnostics continues to offer NHS hospitals the software and installation free of charge.
The CEO was an NHS cardiologist at JR Oxford and is VERY pro- NHS
Hello PSouthWest and welcome. Firstly you need to look upon the NHS not as a whole singular department, but a combination of many healthcare trusts all operating independently of each other. In England for example there are 207 clinical commissioning groups. 135 acute non-specialist trusts (including 84 foundation trusts). NHS Wales and NHS Scotland also have their own structure.
As each of these trusts are run differently from each other, it becomes a huge financial mess. Patient information isn't shared as regional computers can't access another trusts data. If a patient at a local hospital was to refer a patient to say a Liver specialist hospital like the Queen Elizabeth in Birmingham, the local hospital couldn't access their records on the patient, see their scan results or blood tests, as this data now belongs to a different trust. (I hope your able to understand what I'm trying to get at there).
The up shot of all this is that because all healthcare trust are all run and financially budgeted independently of each other. They all therefore seem to regard treatment and the use of equipment differently. I have been trying recently to highlight the need of a mobile fibroscan machine for our local university hospital. I really wanted to raise the money through fund raising just like Bournemouth & Christchurch hospital have done, thanks to the fabulous work done by Liver specialist nurse, Hazel Allen. My hospital has said no to this idea as they wouldn't be able to make any money from this venture.
It all boils down to cost, and if the hospital deems this to be a good investment or not. Sadly these NHS trusts are a law unto themselves which is a shame in my opinion. I believe a radical shake-up of the NHS as a whole is needed. The only thing that they all stand for is, "Free at the point of entry".
Going back to your original question though, if a hospital has equipment like a MRI, fibro-scanners, that can give them the results they require. Why do they need just another machine that can tell them the same information?
(I guess I'm now going to be getting a lot of flack now for sharing my opinion).
Thank you for the welcome and all that information; I had no idea! In my head I thought there was parity of approach and lots of sharing of information!
I should have known better from my days in Civil Service and Local Government employ 😏😏
The Perspectum software is compatible with MRIs already in use and it also shows iron levels within the liver and visceral fat.
Fibroscan technology is rather old now and >40% fail in obese patients...
The only alternative way to monitor AIH activity is via biopsy: invasive, risky, only as good as the pathologist looking down the 'scope - tiny sample which may miss healthy or diseased tissue..,
Having dealt with several different departments within the same hospital for the same symptoms I now realise that the departments don't share information about the tests and treatments I've had never mind dealing with another hospital trust. 😣
I took part in that trial as well. Do you have the results tgat you can print out?
I had 2 scans 1 year apart and the instant visible difference us startling.
I printed off copies of both and had a copy put in my hospital file and my hepatologist (although I changed my consultant) also took a copy in the hope of persuading the trust to purchase the software. Despite much pressure from her, she is head of the department, the Trust cannot find funding at the moment.
Hopefully, things will improve. As I said the difference between .y results showed how quickly my disease was progressing in a way I could also understand.
I printed mine out also - and discovered my disease had progressed despite lfts being in the normal range for 18 months.
Perspectum are supplying and installing the software free..
The more of us who ask and bring pressure for this scan the more likely we are to succeed. Two weeks ago my Consultant told me the only option I had to check current status of my liver was another biopsy.
Fair question! I was so impressed when I took part in the trial that I asked if I could be a patient voice for them. All companies like this are encouraged to have patient input. As AIH is quite rare they were keen to find out more.
That's it though - I am not paid by them and have no financial interest at all. Just a patient, grateful that someone has developed something that will help us 😊
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