Appointment

[Lippy42]

My hubby has just got his first appointment through after being referred he has decompansated liver disease what happens at your first appointment with consultant it will be 6 months since diagnosis and 7 months alcohol free

[AyrshireK]

Normally they will have a chat regarding the situation to date - medical history etc. They'll discuss current situation and possibly identify where you go from here - future monitoring, necessary investigations or interventions plus answer your questions. They normally take patient weight, BP and bloods too just to get an up to date view.

It's good to make up a notebook to take to every and all consultations & in that (prior to the appointment) make a list of current medications - dosages etc. Note down any current symptoms and anything of concern and then your list of questions. Hubby and I have a notebook plus a big file in which I keep all his appointment letters and hospital reports/results (you'll need these to back up benefits claims plus it helps to keep an eye on the situation yourselves).

If you need help with dietary advice ask for referral to dietician, any other helps needed then ask for those. Make a list of all your questions and take a pen to jot down answers. I hope you are both able to attend - even with covid regs a patient can have a carer attend with them especially if hubby needs help understanding stuff. Two pairs of ears are better than one and as his home support you'll be aware of stuff that maybe hubby isn't. It is important to be a TEAM as you go forward so you need to be in the loop/including in discussions.

If you are going to be applying for PIP or any other benefits ask the consultant would they be willing to write a wee letter of support for the claim in order to evidence hubbies condition and the support needs he has. DWP will not seek this information themselves (as it backs you up) so it's up to you to provide it and it would be good to get your hubbies consultant on board with that.

You also need to establish a means of contact with consultant in between appointments so make sure you ask what the procedure would be if hubby suddenly got worsening symptoms etc.

Also, make sure a new scan is in the pipeline, if it's been 6 months or more since his last then he is due (at least) an ultrasound scan to check on his liver.

All the best for it,

Katie

[Lippy42 in reply to AyrshireK]

Brilliant thankyou so much 🥰

[Zukosmile07]

Is this an assessment to get put on the transplant list or just an appointment with the consultant?

Danny x

[Ubwa]

Was he admitted to hospital? If so pretty poor show that they only checked up after 6 months initially. As to what course it will take, a lot depends on the answer to Danny’s post, in my experience I was only broached about a transplant after a year.

[Lippy42]

Initially his first appointment was 13 dec with liver clinic but as said he ended up back in hospital on the 9th dec so I cancelled the appointment and told them he was in hospital then about the end of jan I phoned the dr to see when his new appointment would be and after 3 calls it turn out ste had been lost in the system and they apologised and said an appointment will be sorted it will come through the post we got it Friday for the 3rd may .Ste also got a letter saying he got an appointment on the 16th feb with a dietician but it will be a telephone appointment. To be honest from being told he had decompansated alcohol liver disease they said it's going to be a long road to knowing where hes at every new symptom ste gets our dr just says it's all part of the disease so we just feel we are walking in the dark I've started writing everything down as Katy said another member because may is a fair way off I dont want to forget things .Thanks for the reply x