Medication help

[itsmebran]

I'm stage 4 terminal without possibility of a Tx, have a TIPSS, and have an active DNACPR. I was referred to St Marys who said it was an inappropriate referral, and I'm supposed to have a fitted syringe driver with morphine, midazolam, levomepromazine, and hyoscine (busco). For some reason the meds are no longer being prescribed despite me being in constant agony and EOL palliative, and I dont know where to turn anymore for pain relief as going to hospital constantly is proving useless, and Ive been told the only reason theyre holding medication back is due to my age (25) and "none of the prescribers want to take the responsibility or be liable". Can I please ask for some sort of help as my ReSPECT states prioritise comfort over sustain life, yet nothing for comfort is being done.

[AyrshireK]

Have you discussed this with your GP or your local council adult social work team. I don't know of St. Mary's ............ is that a hospital or hospice? You should be under a palliative care team and perhaps having hospice help if you have reached the end of the road as regards liver treatment.

BLT has a page/publication about planning for the future which includes palliative care. britishlivertrust.org.uk/in...

Sorry you are having difficulty getting the care you need.

Katie

[itsmebran in reply to AyrshireK]

Ive discussed it with every health professional i can get my hands on, St Marys is a hospice, they get involved for so long and then dismiss me again, same as hepatology, GP etc, theyve openly admitted to me that its my age holding them back from refitting the syringe driver but Ive just been left in a black hole of confusion

[AyrshireK in reply to itsmebran]

That's sad. I wonder if the British Liver Trust helpline nurses can point you in the direction of more appropriate support. It sounds very wrong that you are being left in a state of pain without support if you've been told you are at palliative care stage.

The British Liver Trust Helpline is a lifeline for anyone affected by a liver condition. Call 0800 652 7330 between 9am and 3pm Monday to Friday (excluding bank holidays) or email [e-mail] (emails can be sent at any time and are answered during helpline hours).

Helpline calls are subject to monitoring by our Liver Nurse Manager and on occasion calls will be recorded. We do this to train staff and to monitor and evaluate the service.

NB We will not tolerate abusive or threatening behaviour towards our nurse team and if this happens, we will end the call and block abusive callers from using our service

[Richard-Allen]

I am so sorry to hear about your predicament Bran. The only thing I can think of which might be of help is HealthWatch: healthwatch.co.uk/

HealthWatch gets involved when things go wrong and they act as a go-between between say a doctor or hospital and yourself. They will get to the bottom of what has gone wrong and find a way to sort it out.

HealthWatch is free and they’re not one of these cowboy solicitors or anything like that. Just take a look at their website, and simply enter your local authority and give them a call.

There are a few videos over on YouTube you can see about the work that they do. Here is one of them: youtu.be/iIk0BNQuado(Not working as expected?)

I hope this works and that you get the help and pain meds you both need and deserve

Merry Christmas

Richard

[Readlots]

It was the community nurse team who sorted out medication for my Mum. I think your GP might be able to put you in touch with them. I really hope you get sorted out quickly