Benefits after Liver Transplant

trixie81

Hi! I've been receiving the highest amount of PIP since May 2022. Its due to be reviewed in May 2025.

I waited 2.5 years on the transplant list while receiving PIP.

In March '24 I was finally blessed with a Liver Transplant. Was in hospital 18 days. To cut a VERY long story short. Its been a very difficult recovery and it still is, even now 5 months later. I've also been diagnosed with Agoraphobia and Panic disorder since first claiming pip and getting the highest rate.

I have not updated PIP with my transplant or mental health issues because my daily needs have in fact , in my opinion, got worse. Although it may seem that ok, now you have had a transplant you must be cured.

I called PIP to say "My diagnosis' have changed but my needs have got worse" The PIP agent told me that because I get the higher rate, I don't need to have a review if my needs have stayed the same or got worse.

I'm really struggling with this answer. I have had this transplant but as you can probably imagine, recovering from an op like that is very hard. Like a rollercoaster of symptoms. The immunosuppressive medications, the wound. I've been hospitalised 3 times since with major infections. All times in hospital was under 10 days.

I've had to recover completely on my own too. My Agoraphobia and social anxiety got so bad while I was waiting on the transplant list that it left me with nobody. All my family live in the states. I didnt even have a visitor at the hospital let alone any help when I was discharged. I paid cleaners to come in until I couldn't afford to anymore.

I guess my question is even though pip said I don't need to start a new claim. Should I though??? I'm so worried that I've been literally worrying myself until I completely break down into a crying mess, give myself a headache, cant concentrate on anything, agitated until I force myself to sleep with otc sleep aids. My anxiety is out of control with this.

They should have already sent me a claim form because my claim ends in May 25. The pip agent said at that my claim may get extended another 12 months. I've been waiting for the form to arrive so I can fill it out but still no form.

The only thing that's changed is my transplant. My daily needs are different but tbf they are just as bad. My mental health actual diagnosis has only been since June 5th. I never told anyone about my mental health while I was waiting on the transplant list because I was scared I wouldn't be listed. So Pip isnt aware of my mental health problems.

Should I wait for my new claim form or start this absolutely awful and this anguish of pip now?? I've absolutely nobody to help me and I don't know what to do. Thanks for your time. Samantha

poppy123456

You can't start a new claim because you're already claiming PIP. As you're already receiving the highest award there's nothing to report if your conditions get worse because you can't receive a higher award than you already have.

Thankfully the person you spoke to at the call centre was correct. (rarely happens) You need to be very careful about reporting changes because some people from the call centre may not be as helpful and they could send out another form.

Reviews usually start about 8 months before your award is due to end. For you this will be around Sept/ October time. You will need to make sure you treat it as a new claim and include as much relevant information as possible. Please do not just put no changes, if there's been no changes.

There are very long delays for review decisions and you could be waiting about a year, sometimes longer for a decision. Your PIP award will continue until a decision is made. If no decision is made by the time your award is due to end it will be extended for up to 12 months.

trixie81

Thank you so much for reassuring me. I'm hoping now I can finally get this thing off my mind, for a while anyway. After reading so many horror stories its hard to trust PIP. The agent was really nice actually. He/she interrupted me while I was about to tell him/her everything and basically told me to stop worrying. Told me the same as you. Ok. This helps alot. Thank you.