Hello Grumps,

I'm really sorry that you and your family haven't had the support you needed from Macmillan. We'd like to investigate further and see what went wrong and if we can get any support for you and your dad.

If you'd like to pursue this, please drop us an email at community@macmillan.org.uk, with some more details of the times you tried to get support from Macmillan and what happened. For example, has your dad been referred to a Macmillan Nurse? You mention benefits - did you try to get benefits advice from our Support Line?

Well Grumps, I will probably suprise even Macmillan now but then thats just me, I came on here a bit lost, still am really, heads a mess, I can be nice, funny, caring and sometimes even give some advice and then sometimes I can kick scream shout sometimes even swear but you know, I'm not barred, not been told off, you know why? because they know for us, life's not easy at times, hell for some people most of the bloody time, now what do they do? good question! well last june my mum died of the big C, after being helped with getting things sorted at my sisters, bed poo chair nap pads etc benefits for caring, one month later to the day almost I was told, Kev you got the big C you lucky old bugger you (well not quite like that) I phoned macmillan, it was a man from Scotland, he talked to me when I was scared, told me how treatable it could be these days, told me to phone back at such a time because the lady who deals with benefits would be back and things got sorted, now winter was on its way and I was freezing me tits off (sorry I do that now and then) at The Christie Hospital Manchester the week I started Radiotherapy my wife went to see the Mac adviser there, we had seen the TV advert like you, I'm going on so will cut short, sum result of our efforts, first winter gas heating bill paid (well nearly in full) all travel and parking claimed back at sorce, Mac even paid for a new electric shaver because you can't use blades, then I found the people on here with all the support and advice, were not pro's any of us but we care, all I can say is who did you ask for help? because both me and my mun have been helped by Macmillan and I am back again on Thursday for more help and they have not said, er have'nt you had some already, help that is not money, I'm not cheeky, hope this has answered your question somewhat, all the best and good luck,  Kev   Ps I should have called myself grumpy I like it lol

Hi Kev You seem to have been extremely lucky with the help you got from Macmillan. I'm glad someone actually gets help, I wish I knew how people achieve that help. I've just spent 4 months (for the second time) having chemo and the only time a macmillan nurse telephoned was after I said to my trials nurse at Clatterbridge that I could see why ppl committed suicide!. My mum had no support from Macmillan, she wanted to come home to die and once we left hospital no contact, maybe once yr referred you have to keep asking? I'm so angry at the moment, Ive had to deal with my mum dying, nursed her at home for three weeks in 2006, then I had my own cancer diagnosis in 2007, saw a macmillan nurse twice, once in hospital and once when she rang after a few months after I finished my chemo, she wanted to see me and I came out of the meeting in tears, she basically wrote me off, no sugar coating, no sympathy, just yr cancer will eventually kill you. Fast forward to 2011 and my cancer came back, no-one to turn to really, finally got help from local day hospice, amazing ppl, the best ever. Don't have an assigned Macmillan nurse so wouldnt know where to go to. Now my dad has been diagnosed terminal and we were told he'll be given support both practical and help claiming for any relevant benefits. Macmillan nurse turned up today gave my dad a telephone number for benefits agency! Not quite sure what other help they are going to give us when we need it. Probably nothing if the past is anything is to go by! I'm 190 miles away from dad and I'll go help him when he needs me to look after him but I just know I'm going to be on my own with no help from the outside. I'll reply to Pricilla and see what help if any I get - I won't hold my breath, don't think my face fits........

Hi Pricilla I'm not sure what details you need and to be honest I'm not sure I believe you can help. One of yr nurses saw my dad today, was supposed to ring me first but didnt, left my dad a telephone number for the benefits line. Surely it should be glaringly obvious that my dad is 81, he's not english but russian and therefore not everything is as clear to him as it is to me. He wears a hearing aid. If they'd have rang me first as they were asked to I could have explained things to them, not just leave him papers to fill in which he finds difficult to do. All I want is someone who can treat him with the sympathy and help he deserves. I've not once come across a Mac Nurse who does anything than pays lip service to what your organization offers. Again, what is it you do? To be honest I don't even know why I'm bothering .

grumps i had the same my brother moved in with me in his last months the mac nurse came 1 to see him then nothing they dident seem to care then once he was in the hospice dident hear hide nor hair of them recived a cheap tacky sympthy card when he died that was it they did help him recive some extra benifits at first but thats all the help and support he recived so your not alone being diselusioned with macmillian only support i got from mac was the support of the users even ringing the mac help line all i was told was i wasent intitled to help basicly get on with it yourselfs so your not alone