Whilst I am still struggling with getting help for my son, I had a bright spot of news this week.
Had a consultation with my liver nurse, first time face to face since lockdown.
My bloods have been great for several years, ultrasounds all good too. I had a Fibroscan as I hadn’t had one for around 4/5 years. Really happy with the results score of 9, when I had one before it was 21.
As a recovering alcoholic, with PSC, I am pretty pleased with that and grateful to the NHS for their care and monitoring.
Unfortunately I cannot get any help from the NHS for my son as yet, his condition is worsening as we go on, reducing alcohol has made his health worse not better. An urgent referral to Hepatology by GP has so far been met with a wait of over one year. His bloods are shockingly bad, my care is under a different health trust, in Mid Essex there is just no space in the system.
Still I will battle on he has a scan on 1 August, which may trigger some sort of care/response.
If I had the financial means I would have him in a private facility, but I don’t.
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scampi2122
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Consider treatment abroad. Things are much more inexpensive in places like Turkey and Poland. Note that I am NOT a doctor, perhaps it is bad advice, feel free to ignore. I am just worried about the year wait and hope you can do something sooner. What about a go fund me page?
Thank you, after living with a cirrhosis diagnosis from my old Fibroscan in 2017, I now fall into the fibrosis category. Very happy with that result and a very good reason to stay on the abstinent path I am on .
Made a little progress yesterday, spoke with his GP who is pushing again for a my son’s urgent referral.
Unless your son engages 100% with the Essex alcohol team and jumps through every hoop they set up he won't get a residential detox!It's at least 12 weeks of counselling and commitment before they approve the funds, not supprising as its many £1000s.
Miss a session and the wait starts again.
I hope he gets it but the detox only gives him the tools, he has to do the work and learn how to use them first.
Thanks for reply, yes I need to follow up with them and check the process. Apart from going into see them about 6 weeks ago their only requirement has been a Zoom group session once a week. They have offered no counselling sessions at all but maybe that comes later.
He is unable to attend in person as he is too unwell, no chance of public transport with his diarrhoea. He needs a medically supervised detox really, after which he could hopefully engage more fully. Last month they offered a appointment with a liver specialist but it was withdrawn as he didn’t engage enough, this month he has engaged but no appointments available. So fingers crossed for next month.
His only contact point with the services is a student worker, who I have found less than helpful, I think I will try speaking to them this week and check if other services are available.
It’s a tricky situation, trying to cut him down just makes him even worse in his physical health which makes his mental health even worse. Combined it makes him very difficult to live with.
Interesting that you had a similar experience to me with the Fibroscan results, I got a copy letter yesterday saying my diagnosis was now F2 moderate fibrosis, I am well chuffed with that and ditching the cirrhosis label 😃
Well done, you are doing amazingly well. It’s no small thing to do what you’ve done and you are now reaping the rewards. Your health is improving. I do hope things improve for your son.
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Some really good news at last...
Some really good news and some really bad news.
some good news
Not good news advice welcome
