Please someone, the bloody macmillan nurses or sufferers or families of sufferers please suggest ways to manage the breathlessness and coughing. Do humidifiers work, will wedge pillows work? How do you get somebody professionally trained to help provide some relief in the days where you are dying. I'm sorry but my family experience with macmillan (York hospital) has been shockingly disappointing. Support? Where? 'Go to GP' does not count as support. Especially when GP refuses, yes refuses, to give any treatment. Macmillan response 'make a complaint'. Not 'this is how to navigate help' not 'your GP should have done this' not 'we will come our and assess and move forward'
My dad has no quality of life. None. Despite screaming for help and guidance we get none- I do not expect macmillan or the health service to 'pay' for everything- however I do expect the minimal support of how to alleviate and escalate. My dad is dying- it is not acknowledged or 'supported' to have a dignified death. The ideals macmillan or the ideals I always thought they had, have disappeared. Go on sit behind your computer, give links so unindividual it's frustrating, run your charity as a business and not to help cancer patients. Please do not indicate the message you sent pointing out the links with no relevant help- relevant help would've been acknowledging problem and tackling it as best to your kniwledge
So sorry to hear about your dad's suffering. I think it's a postcode lottery where end of life cancer care at home is provided. I had two neighbours either side of me, one was dying of multiple cancers in her body, she was only 49, and the other neighbour was dying of AML leukaemia, she was 82. They both died within six months of each other and at home.
Both neighbours were cared for extremely well during their end of life care by the Macmillan nurses who visited once a day and were always available by phone with advice. My neighbour's families could not have coped without them. This was in Liverpool five year's ago. They were the Community Macmillan nurses and were part of a Palliative Care Team. I think you have been let down by the GP somewhat, also the hospital where your dad has been treated, they can refer you to a Palliative Care Team who can come to your dad's home and assess and treat symptoms regarding pain and discomfort.
As I said, different parts of the UK appear to have different levels of care, in your situation very little. I do hope you get the support your dad really needs. Keep nagging your medical centre to see a GP, or request a telephone consultation on your dad's behalf so that you can explain the extent of care needed.
Best wishes 
Hi 2Ears I am so very sorry to hear what your Dad is going through, this is absolutely awful for you both. I can only go by my own personal experience of when my mum was sent home from hospital to die, she had ovarian cancer. Her care was discharged from the hospital to the GP, and it was the GP that put in the referral for the Macmillan nurses to come. I would think that is why the Macmillan team have their hands tied, if no referral is being made.I have recently had my own experience with my local hospice for some treatment, and again I had to wait for them to receive a referral from the GP, and it took several phone calls until this was done.
I would be complaining to the GP practice manager and I would copy this complaint to your local IBC you can find your local one
Should you have to do this ? No! But if your GP isn’t listening then these are the steps I would take. I keep hearing that services have not returned to normal post pandemic, but it seems like they never will, and to hear stories like your dads are heartbreaking. I agree with Sanguinesse I think it is a post code lottery, and it is so wrong.
