Are there any liver transplant patients under the care of Kings here? We're getting concerned about the lack of contact my brother has had over the last 6 months with the consultants and blood tests being carried out. He has no appointments scheduled or blood tests booked, despite these being every 6 weeks or so at the start of the year.
They are currently investigating an issue with some of his results, but he has no idea what is wrong and no one has been returning his calls. He contacted liver outpatients last week and left a message. Is this the right way to be getting in contact with his consultant?
My brother has Aspergers which makes it difficult for him to deal with things if they don't happen as expected.
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Edbergius
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Hi, so sorry this is happening to your brother. I am not in the same area, but we have also had difficulty getting my mum an appointment with her liver specialist.
Could you perhaps get in touch with the consultants medical secretary? This has been a successful method for us. If not, maybe try his GP too?
Had my transplant at Addenbrookes and if there is any problems I have a direct phone number for the liver transplant coordinators, your brother should have been given the number for the ones at kings.
Sorry to hear that. King’s liver patients have a Facebook Page called Listen. I had my transplant at King’s and was able to join it, though I am now back under the care of my local liver unit🙏
I would suggest in the first instance that he contact the liver transplant team co-ordinators, he should have the contact number for them, if this fails , he could perhaps ask the GP for support in seeking follow up.
Thank you all for your replies. I will speak to him about contacting the transplant coordinator (I believe he has already left a message with the consultant's secretary) and will look at the Facebook page too. The GP is a non-starter at the moment as the phone is constantly engaged.
I'm 14 years post Tx and stable (as far as I know). It was delayed, but had a telephone consultation with St James a few weeks back. They wrote to my GP to organise blood tests locally. Also now have an appointment for a Dexa scan and delayed colonoscopy (prep=yuk) later this month. Seems that the NHS was closed for non covid but opened up again a month or so back.
As others have suggested try your transplant coordinators or medical secretary. If you don't have their phone numbers try the main switchboard and ask for the coordinators or consultants secretary.
Hi,had my transplant at addenbrookes and had 3 telephone consultations following having bloods done at GP,addenbrookes sent all blood bottles etc to me in post this all since Covid, does kings have a My chart app for your phone/computer where you can access your results & send/receive messages?
Don’t be afraid to keep ringing the transplant coordinators they may not of got your message
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