New diagnosis - very little information

Hi Shelley, I really dont have any knowledge on hospice care etc but I just wanted to say how sorry I am to read about your dad. 

There are plenty of people here who will be able to offer some great advice, at least my response will keep your post at top of the list. 

All the best, I hope dad gets the best care and support ️

Hello Shelley (Shelley9468f31ebf) 

There should be an MDT  team at the hospital dealing with dad's case and they should be able to decide when he should be moved to a hospice although there is no harm in you pushing for this.

I would advise you to give our Support Line a call on 0808 808 00 00 (8am to 8pm 7 days a week) and they should be able to help you.

I do hope you get dad sorted.

Best wishes - Brian.

I’m truly sorry for your worries and I can offer little except that asking questions to the clinicians overseeing his treatment is a must. You have so many issues and joined up thinking is a bone of contention lately on this forum. But help is always there.

Finding out information about hospices might be the very best bet. I was introduced as a day patient before I was ready and the shock is still with me, I’m in need of their kindness, support and pain relief guidance which is enough for now but is world class. Behind your questions will be worries not just about how dad is but money matters that are as hard to mange as the prognosis. As Millibob always says, get your questions written down, when you get answers write them down, then write some more. This is as  frustrating as it it is draining so my advice is to get good sleep if you can, start the day with vigour and be ready to be bashed down at every damn hurdle - but keep your cool and keep asking the same questions until you are satisfied. Also talk to a hospice, now. Just get into a conversation with them, they will allow you to cry, to explain in your own time, to give you great advice and you will be better just because you’ve unloaded all that stress caused by not knowing. We will be here night and day, talk to us too. We know how hard it is. 

Hi Shelley , 

so sorry to be reading your post . It is so hard watch a parent being is pain and you feel you can’t do anything .

 It might be helpful if you ask to speak to the pain management team which is led  by a consultant   explain your concerns and what can they do to make your dad comfortable and pain free.  Don’t take no for  an answer.  

Hospice care is excellent but they do not treat the ailment  but manage . They are more  focussing on a holistic approach to emotional , spiritual and quality of life . not just for your dad but those nearest and dearest to him also.  

They can offer hospice care at home if the person wishes and will support their choices . 

Huge hugs 

Liz & OH xx

johnam said:

Don’t take no for  an answer.  

This is one to near in mind.

Do not forget that the NHS has enormous pressures on it, and so things can get missed - kind of "done that" and moved on to the next one.

My daughter was in a similar position with her father in law who, sadly, had pancreatic cancer. He was in pain but "didn't want to make a fuss".

You'd think she was the wrong person. So terrified of government letters that she makes me open them. 

Just cause a problem for a member of her family though, and she becomes a holy terror. She tracked down the team responsible for his care and then got into quite detailed conversations about treatment.

His treatment was better managed for the intervention.

Get the nurses on your side and then talk to the matron responsible for the actual care.

Things will change.