Please, please help. Can someone, anyone share their experiences of how long it has taken from the medical point of referral to contact from and actually receiving at home palliative care. I don't know what I expected or how it is supposed to work but I did not think it would be like this. At the start of the three weeks my husband was in hospital I was told that if this cycle of chemo did not work there would be no benefit to further cycles at this point we decided and made it known that if that was the case we wanted palliative home care. My husband was then discharged from hospital three weeks ago, with a prognosis of weeks. We received a letter confirming this and that I quote "community input for his symptom management at home and will refer accordingly". In discussion with the consultant we (both my husband and I) had made clear that home palliative care with the support from Macmillan would be our preferred option. The letter does not mention who would support us at home and we have heard nothing further. I rang the GP to be told in could take 2 to 3 weeks for someone to contact us and that could either be the District Nurse or another organisation. As my husbands prognosis was only a few weeks and he is rapidly declining I need the support now. There is no other help as we live alone and we are beginning to feel abandoned.Up to this point we have received nothing but excellent care and communication and now it feels a little like we have been set adrift. Yes I know that many people require support expecially in these stretched times but its difficult watching my husband go through this without his having the dignity of the most comfortable and pain free end of life without any meds. Thank you
