My health has taken a nose dive over this last year. My consultant has put me on palliative care.
He says no more lung function tests or CT scans, a triple function inhaler instead of three inhalers and full time oxygen instead of ambulatory.
What else can I expect from palliative care? What can I ask for?
I was referred to palliative care by my GP last year. I was assessed, prescribed Diazepam and referred to my local hospice. I had a 2 week stay at the hospice where I was monitored and prescribed Lorazepam prior to discharge. I now have a weekly visit at home from one of the Hospice at Home team. I have no contact now with the palliative care team and had one visit from the team on discharge from the hospice but nothing since.Your experience may be completely different. Best wishes x
Perhaps you should follow the reply below. I think you should get more support than you have had. Best wishes xx
Thanks for your concern. I'll think about it. I have a monthly visit from the district nurse and a weekly visit from one of the team from hospice at home. The latter are wonderful and very supportive. I suspect that I'm not ill enough for palliative care to be involved at present.
That’s sounds like my Husband had. Except he wasn’t lucky enough to stay in the Hospice. I did take him down once a week to be with other people in a similar situation and we had a visit from a Hospice nurse once a week but I felt that was a waste of someone’s time. There was nothing they could do. I called them on a few occassions when my Husband had a turn for the worse. But really they couldn’t do anything. I found it all came down to me and it was hard.
I had 2 weeks respite in the hospice last year and now find the weekly visits very helpful. They will come for longer to give my husband a break if I ask. I just have to phone them. I'm sorry that you didn't feel they were worthwhile.
The Hospice my Husband was under completely shut a while after.
Don’t get me wrong, they tried to help us but really there was nothing to do to help. They would supply any mobility aids should he need it. It was lucky I had my health at the time because I was pushing him round in a wheelchair as he got worse.
Surely once the hospice takes over that is palliative care. I have also just been put into palliative care and that was the way it was explained to me.
So far I have been so impressed by everyone involved. They have been very caring. I keep a list to write down things to ask and make sure I understand what they are saying. It isn’t always easy to navigate the NHS so I try to understand who is responsible for what.
Good luck to all of you facing a short future.
Hello Wheezyof,
I am sorry to hear of the issues you are having with your health at the moment. It can be difficult to know what to ask your healthcare team with regards to your condition. It would be a great idea for you to have a chat with one of our nurses who can help you with this.
If you live in the UK, you can call us on 0300 222 5800 (option 3) and we will be happy to talk to you further about this.
Take Care, Helpline Team
Contact us | Asthma + Lung UK (asthmaandlung.org.uk)
Thank you. I will ring .
Good luck . Not an easy place to be I'm sure . Hopefully a nurse will be a sympathetic ear and have some other ideas . God bless.
Best wishes. I would ask them to drop in regularly (weekly/ fortnightly?) to make sure you do not feel you have fallen off the radar. xxx
I was put on palliative care back in 2019 and referred to a hospice, the hospice team assessed me and my home to see if I needed any extra equipment or help. At first I had regular visits to the hospice for education and exercise then Covid put a stop to all that. Now the hospice has changed its approach and no longer offers “day care” they support in patients and give a basic care education and exercise one day a week for six weeks for out patients. After that you can call them if you have a problem but the emphasis is you should contact your GP or 111 in the first case. My GP has not had any contact with me as a palliative patient but I will be seen if 111 has triaged me first. I do get an annual check up with my consultant who is very good and I can always contact his secretary if I have a problem. I was diagnosed with COPD in 2013 and my first appointment with the GP practice COPD nurse was last November, I’m due another checkup in November but I’m expecting one. So I think if you are coping then there is no extra support by being palliative. My understanding of palliative is that you have an incurable condition, so the NHS is no longer trying to cure you but will maintain you as best condition as possible. I meet weekly with a group of friends who are all palliative and our stories are all similar, we don’t get any extra help from the NHS or hospice. It will all depend on your own hospice and GP and what they can offer and how big their budget and staffing levels are
Sorry to hear that wheezyof, must be difficult.
Hospices do vary and rely on voluntary funding. Try to get all the help you need from whereever it is available. The important thing is to make your life as manageable as possible, especially dealing with pain or distress for you and any family or friends helping you. Have what you need at home and know who to contact in an emergency.
End Game. Advice on Palliative Care. 
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