Hi Grumps. It does seem to be different in different areas. My mum was diagnosed in hospital with the hospital based MacMillan nurse present. Then within a couple of weeks of her coming home we had been contacted by our MacMillan nurse, the district nurses and the GP. The hospital contacts them on discharge and they get in touch with us.

I realise this can't be the same in all areas as others are asking you if you have asked for help. We didn't have to ask, it just happened. The MacMillan's initial visit went through benefits etc, and then after that she came once a month. Mum didn't really want to talk through how she was feeling but MacMillan is good for sorting pain relief out - we get prescriptions from her as often as we do from the GP. They all liaise with each other, for example when district nurse noticed pressure sore pain was bad, she contacted GP and MacMillan and they sorted morphine out. I had assumed everyone got this service but am obviously wrong.

What does cause problems is the fact that I (the carer) live at a different address. They all used to just turn up at mum's and it still sometimes happens even after a year of telling them. The problem is mum also has short term memory problems so she needs me to speak for her - she can't remember how she felt yesterday or even an hour ago, and wouldn't remember to pass info on to me. My dad is there to, but he is just as bad. It has been an uphill struggle just to get them to ring! I only live across the road from them so its not like they have to wait hours for me to get there. So I sympathise completely. If I were you I'd ring and tell them he didn't understand a word and they need to come back when you are present .. and keep doing it everytime someone attends without letting you know first.

Hi Grumps,

I'm so sorry to hear you weren't treated with sympathy. We aim to support everyone affected by cancer and always want to investigate if this doesn't happen.

We'd need to know your personal details (which is why I need it in an email, as our Guidelines state that you shouldn't publish your personal details on this site for security reasons) and where you are based. We can't look into what went wrong unless we have specific information about the case.

In relation to the benefits advisor, I'm sorry that the nurse didn't understand that your father can't speak to them himself. You can call them on his behalf, or I can get them to give you a call - again, I'd need you to email us and provide your telephone number. They can advise you on filling out the benefits forms.

Hi Pricilla

It seems I may have resolved the problem myself with the help of dad's lung specialist nurse.  I now have the information I need and it looks like maybe finally, I can get some support.  Thanks for replying.  I just wish I hadn't had to stress over this given that I'm just getting over a course of chemo myself.  If all doesn't go as I hope I'll e-mail you and perhaps you can look into things for me.  All I wanted was some support which it appears I may finally be getting.

Hi Grumps,

I'm really glad to hear that things are improving and I hope you get all the support you need. Yes, of course you can still email in future if you need to.

It must be really difficult for you caring for your dad so soon after your own treatment. You can always share things with other community members here - many of them find that it helps to talk to others who are going through similar experiences. You can also call the Support Line on freephone 0808 808 0000 (Mon-Fri, 9am-8pm) - they are available if you need someone to talk to, as well as practical advice.