Vote cancer support - end of life care

Hi, I felt i had to reply to this post.

My Partner passed away a week ago, at home, where he wanted.

However the end of life care he received from the Palliative Care team left a lot to be desired. From the time we were told at the beginning of February that all treatment had been stopped and being given a prognosis of 3 months, we didnt hear from anyone for a period of at least a week. Our Macmillan nurse we met once (a few days before my Partners passing) and to date she still hasnt contacted me a week after my partners passing.

In the few days before the event we suddenly had equipment turning up-sometimes twice! And to say my parnter was upset and confused was an understatement. The Marie Curie Nurse didnt turn up on the Monday night-2 nights before he died and i was very much left alone to struggle. We were assured the District Nurses were available 24 hours a day but in the hours leading up to his death we were frantically phoning them to come and administer medication only to be told no one was available until 7.30 pm-the phone call was made at 5pm. We even had a carer turn up the following morning to sit with Ian.

It has took a lot of courage for me to write this as it is still so fresh in my mind, and this is only a small part of the total shambles it was. I feel that -yes- patients shpould be allowed to die in their homes, but i also feel that the Palliative Care Team were totally inadequate in their care which left me very distressed in what should have been a peaceful event.

I am so very glad my Partner did die at home with his family around him, i would of hated for him to be in hospital in strange surroundings but maybe we should be calling for improvements in Palliative Care, after all, if we dont tell them their failings it will only happen over and over again. When i am feeling stronger i am going to put all of my concerns in writing.

I was also very dissapointed in the Macmillan Nurse we were allocated, as i said before we met her one a few days before Ians passing and to date nothing from her at all. It may be that we have just been unlucky but i have been left feeling very let down.

Julie

Julie

Bert was exactly the opposite of you. Our District Nursing team were available 24/7 palliative care team was put in place about 15 mins after I asked for it, I went to the pharmacy in the hospital and by the time I got back she had been with Bert for at least an hour, also Palliative care team at home were there as soon as he got out of hospital, arranged for a handrail to be fitted on the stairs a heightened toiled seated wiith raised arms so Bert could lower himself down, a mattress raiser,  so I could get him up out of bed. The District Nurses were up right away with a commode "just in case". Marie Curie arrived all the nights we booked them for. we had an excellent service. When Bert was in hospital they had a bed delivered the District nurse came to visit him in hospital to check what was in his syringe driver and arrange for me to phone her mobile and she would meet me coming out of he ambulance, Unfortunately Bert deteriorated so quickly taking yet another infection the night before he was to get home it all had to be cancelled. By that time I had been staying in his room sleeping in a recliner chair for 2 weeksand he was far to unwell for me to manage at home by this time and sa against my better judgement I had to keep him in hospital, I cannot fault the hospital in any way as the fed me and were very good to me as I point blank refused to leave his room, If he was going to die in there I was going to be there.

I am so sorry you had such a bad time but I can honestly say mine was the exact opposite

Love Teri

Hi Julie,

I am very sorry to hear that you had such a bad experience.  Macmillan do strive to provide the best possible service at all stages of the cancer journey including at the end of life. If you would like to make a complaint you can do so here www.macmillan.org.uk/.../MakeAComplaint.aspx, your feedback is vital to ensuring that we can continue to improve the quality of our services. I will also pass on your comments to someone in our services team so they are aware of the situation.

Helen

Hi Helen, thanks for your reply.

No i dont want to make a complaint, i know Macmillan do a fantastic job, i think we were just unlucky. I think the main problem we had was the Macmillan Nurse that was assigned to us at the start of Ians journey left, and then it took such a long time for us to be assigned another one, when she did come there wasnt a lot she could really add, all a bit too late.

My concern really was that we couldnt get hold of a District Nurse when my partner was obviously quite distressed after i had been told we would have 24 hour nurse cover. Im still glad my Partner died at home, as was his wish.

Julie

First,positivelady, let me say how sorry I am to hear that the care services failed you when you most needed them.  Thank you for being brave enough to tell of your experience.

Although I hope and pray my husband will have  many  more  months with me, my great fear is that I will not be able cope as his condition deterioates.  

Nothing I have heard from our local support services so far gives me any confidence that help will be available when I need it.  We do not have Macmillan nurses covering this area, only hispice nurses who apparently only beome involved in the very final stages.  

It would help to me so much if I could enjoy our remaining time together without the fear that I might let G down in his final months.  But reassuance that we will both be supported is sadly lacking.

Finally, positvelady, i do hope that you will find some peace in the months to come.