Home help / Hospice?

Hi, 

I'm really sorry to hear about your Dad. This seems really odd to me - Mum was discharged from hospital with less than a month to live and she had 4 daily visits from carers and one from a district nurse. Me and my sister cancelled work for those weeks and came to support Dad in looking after her round the clock, which really was a job for 2-3 people.

Whereabouts do you live? Is there a nice hospice nearby he would be eligible for? It's worth pushing for that, they often don't take anyone who isn't in their last few days due to bed space constraints but they might. Did his doctors mention how long they think he has left? It seems like this might be a case of doctors failing to communicate with district nurses and whoever authorises care packages because what you described is way less than someone with advanced cancer needs.

All the best,

Rachel

We thought it was odd too - he said there wasn't any kind of plan, just that someone would be in touch about palliative care. He also said he wasn't given any time frame of how long he has left, but he might be keeping that from me and my brother so as not to upset us.

Regrettably I couldn't go with him to the appointment, I'd just started a new job that week after being out of work for a year, and it's not the kind of job I can easily take time off from. He was improving before, and we were under the impression it wasn't anything too serious because it was so difficult to detect on CT scans, and it took about 10 days to get the results of the biopsy - apparently if it's life threatening they normally tell you asap. We were prepared for it to be cancer, but for it to be terminal with no treatment options has kind of pulled the rug out from under us.

We're in London, there is a nice hospice in the borough but I'm not sure if he'd be eligible. Do you know who I can contact to get information about his diagnosis? Would the hospital or his GP be able to tell me?

Hi and welcome to the online community, I'm very sorry to hear about your dad, things are never easy at a time like this and normally help should be available for your dad.

When your dad was discharged back home he was effectively placed in the care of his GP and you should make this your first place to contact as he will have received information about your dad, whilst he maybe trying to spare your feelings it does not really help you in making any plans and you should press the GP into giving you full information about the care plan that has been set up for your dad, if you get no help from him contact the hospital and ask them what they recommended for your dad.

If you need to speak someone we have an excellent team of advisers who man our telephone support line and if you give them a call they will be able to talk you through the process and give lots of advice, the team are available every day of the week between 8 am and 8 pm and you can contact them in confidence on

0808 808 0000

Can I suggest you make the call as soon as possible the call is free and you have nothing to lose but possibly a lot to gain.

This may also be of interest to you.

Macmillan - End of life publication

It's available as a printed copy or you can download a copy, it has a lot of useful information for you.

I hope you are successful in getting some additional support for your dad.

Please do keep in touch with us and if you need any further help don't hesitate to come back and ask we're only too pleased to help in anyway we can.

Ian

By clicking on the green text above will open up a new page for you.

If you want a copy of the material you will need to set up an account with be.macmillan this is an easy process and you should use your email and password associated with your my.Macmillan online community (don't use your username, just your email address) the information is free.

Hi Izmoth, 

Sorry for the delay, am knee deep in funeral planning for Mum atm! I would echo the point about pressing your Dad's GP about his palliative care plan - it does sound like this is not adequate for his needs and he might be entitled to a lot more help. With Mum, the NHS wouldn't share medical info with anyone without her consent so if you can get your Dad to allow that, sorting everything out will probably be much easier. The terminal within 6 months prognosis is relevant in that it gives you the right to a lot of carer visits at home, but even if he doesn't have that prognosis the District Nurses should be checking up on him much more that they are, so something is awry. 

Also, do phone and visit the hospice asap, if it's nice then that could be a great solution towards the end but they will need to have him on their books, so to speak, before it gets to the point where they admit him. 

Tell us how you get on! Best of luck,

Rachel

Hi, thanks for your reply. I’m sorry to hear about your mum. 

I called his GP yesterday, who apparently hadn’t been updated since my dad went into hospital two weeks ago. He wasn’t very helpful to be honest, even after getting my dad’s consent to discuss with me. 

The paperwork has apparently been passed on to the local hospice, so they’re going to visit on Wednesday to assess his needs. My family and my dad all agree it’s probably best he goes straight to the hospice, he’s sleeping all the time and we can’t rely on his kind neighbours to help us out much longer. 

I’m quite angry that we’ve been abandoned since his terminal diagnosis, like the NHS doesn’t care anymore now he’s dying. It’s extremely distressing especially when we don’t have any indication how long he has left. 

Hi again, 

That's awful, it's his GP's responsibility to sort out care properly. Usually when a hospital discharges a patient and their condition is terminal, discharge and palliative teams work together to put a care package into place and if that's not suitable, they are not supposed to discharge the patient. The hospice would be a great help at this point I think so hopefully that will work out, but it may be worth also calling the hospital to see what happened with his discharge and explain the care package is inadequate, just in case the hospice don't have a bed or don't think he is far enough along in the dying process to admit him. 

Best of luck with the hospice, I hope it works out!

Rachel

My father died yesterday, before the visit from the hospice team.

I'm so angry that no one did anything to help him after he left hospital. His care team had been reduced to one visit a day, the district nurse did nothing when he started to deteriorate. One of the carers called his manager after a visit at the weekend, concerned that my dad was getting worse and needed more help, but nothing happened, no one has contacted me or my brother throughout the entire ordeal. We always had to chase the GP/hospital/hospice who seemed oblivious of his situation.

While I'm grateful his suffering hasn't been prolonged, I'll never forget how little care we received after the terminal diagnosis. I'm ashamed I didn't do more to push for help.

Izmoth I am so sorry the read your last post, as I was reading all the other posts I was forming a reply in my head as I have just been through this situation. Two weeks ago Thursday I had to leave work to fight for palliative care for my mum, despite a note from paramedic and out of hours team on the Monday of that week to her doctor saying it is needed. That afternoon originally both local palliative care teams said no can't take mum on as full capacity and wasn't end of life cause she was eating (which was because the live in carer we were paying for due to having no choice to)  was feeding her. The hospice that were there that afternoon did take us on as crisis management however I am sure that is because I was there and breaking down. If I hadn't been it would have been a different story.

The evening before mum went I was at my doctors explaining how I felt I was failing mum in her one wish, to be at home and my wish of her having the dignity she deserves. I suspect this is what you wanted for your dad and you were left feeling like you are asking for a pot of gold. 

Sounds like your dad went very quickly and is at peace and not suffering physically or mentally. Mum went very quickly (she had gone 15mins after we got the call), whilst not easy I think to myself she was ready, she had seen who she wanted to for the last time and she was protecting us, just like she has tried to do all our lives. I suspect your dad was the same.

The NHS is rubbish, not designed for how the UK is now in terms of people wanting to be at home etc, that doesn't help us, the persons loved ones when we want what is best. They are good at making you feel like you should do it but we can't all do that and actually sometimes our parents don't want it to be there children doing it. Unfortunately the NHS staff we see on the ground etc accept and admit it but the people in the offices don't. This won't offer you any comfort but please focus on your feelings and remembering your dad and not NHS.

Massive hugs to you xxz