Ignored and in pain
SUNLOVER - Oct 20 2022 at 06:16
Dad has Lewy Body dementia with Parkinson's. We brought him home from hospital 6/10/22 to receive palliative and end of life care at home.
A local hospice, who dad was previously known to, would be his main care givers.
They visited 7/10/22. The doctor asked if we had everything, including the 'just in case ' box. She examined dad, signed off all the medication, then left. No one from the hospice has visited since. We received a check in call on Monday 10/10/22.
Dad had become very uncomfortable and agitated over the weekend. On Sunday 16/10/22 we called to ask for something to relieve his pain. We were advised to use the paracetamol he was prescribed. We explained he was not able to swallow solids, hadn't been for some time. We were told to administer them the same way we administer his other medications. He has been off his meds for over 6 weeks.
The nurse then suggested liquid paracetamol. She said they were reluctant to give morphine to patients with dementia as it could be harmful to life 🤷 Their helpfulness has only increased: dad now choking on the liquid medicines (got morphine from GP) They are going to arrange for a Speech and Language therapist to visit to assess his swallowing reflex.
I just want to know if there is a code of conduct, or some sort of 'blueprint ' of what level of service and care should be given at this time.
I do feel dad has been ignored and his wishes, all logged when he had capacity are meaningless.
I'd be so grateful for a prompt response,as this is time critical
This is a bit specialist for this forum, but - this is what I'd instinctively do:
If you're UK based, you need to speak to his GP about this. Also (better to have too much info than not enough) phone your local Citizens Advice (they employ legal experts). Then there is also phoning and asking to speak to the head of the hospice (are they a charity?), and phoning your local MP. I would also phone the registrat of the hospital that last discharged him.
If you get no joy (should do, though) and he has another struggle, you could also take him to A&E and let them have to admit him again and complain for you.
Leaving a patient unable to take pain-relief is downright cruel. "Do No Harm". This is Negligence.
Hope that helps?
Sorry - typo:
PS: I think - try the hospice owner/manager first, to state your concerns and complaints. And then confirm everything that was said in an email ("Thank-you for your time on the phone this afternoon. Just to confirm, that what was discussed and agreed is as follows: (etc)").
Email-confirm like this with everyone you speak to to ensure you have a written record.
Hopefully this will help, if, again, you're British:
"Who can I speak to if I am concerned?
Good end of life care includes good communication between you, the people close to you and the staff caring for you.
Your health and social care team should listen to your wishes and concerns and recommend someone who can help if they cannot. They should explain the situation to you clearly.
If you are not happy with how someone has dealt with your questions or comments, you have the right to complain to the organisation they work for. The law says that every GP practice, hospital, hospice or care home must have a complaints procedure that lets you know how to complain. Other kinds of organisation will have similar procedures.
Find out how to complain about NHS services
How to take a complaint further
If you are not satisfied with how your complaint was dealt with, you can take it further.
For care provided or funded by the NHS, contact the Parliamentary and Health Service Ombudsman.
For care funded or arranged by a local council, contact the council. Find the council's contact details on the GOV.UK directory
For care provided by councils and other adult social care providers, contact the Local Government and Social Care Ombudsman."
Thanks,I am UK based .I have done everything you suggested and more. Dad was bedbound at home. He died yesterday, 2 hours after he finally received his pain relief. What a change in a person's appearance. He must have been in agony, I was scared to look at him, he was so contorted. At the end, he was lying comfortably, as if he had gone to sleep, and was having a great dream
Oh, SunLover, I'm so-so-so sorry for you (sounds uncannily similar to my own father's death, in fact). Are you okay? Do you want to talk about it all?
I'll be around tomorrow and will check back to see if you've replied.
Sorry been in a fog, would love to talk about it if you're still available xx
And I've been in a busy-ness fog! No worries. Post away and I'll be on either later tonight or tomorrow night.
Are you experiencing another fog? Is it coming in waves? If so, is there a rhythm or are they hitting randomly, wholly unexpectedly?