God that's awful DJ, sorry it's been such a shambles!  It's a difficult one to know what to suggest as letters of complaint etc. ultimately eat into your time with your wife, but it sounds like you need to force an appointment with someone who will take the time to sit down with you and talk you through what to expect and what to do.

I'm trying to be positive and think it's less about freeing up beds and more about limiting your wife's exposure to serious infection.  Sadly us cancer patients are best kept out of hospital as much as possible such is the infection problem in hospitals these day  :(

Do you have access to the MacMillan charity (as opposed to just the appointed MacMillan nurses)?  We have a hospice here and a site in town called 'The Oasis' and both are there for any cancer sufferer or their loved ones to drop in for advice, calm, respite etc.  Something like that would also bring you in contact with people in your area in a similar position to you, so a chance of meeting someone that knows the 'tricks of the trade' for getting help in your area.

Given your experience at the GP visit it might also help to find a local advocacy charity that helps people advocate for themselves when dealing with medical personnel, officials etc.  This could involve someone coming with you to one of your appointments and ensuring that you get to lead the discussion.  It can be very easy to have GPs and other doctors monopolise appointments with their needs rather than them meeting your need.

I don't know if any of that is of interest to you, or even available in your area and, as I say, it all eats into your time with your wife, but if you have a local Royal Princes Trust for Carers they would probably know what is available in your area.  As well as the MacMillan charity itself.

In the meantime consider asking your hospital for the Patient Liaison's contact details and drop them a line.  You should most definitely not be left responsible for your wife's care without reasonable guidelines and assistance to ensure both of you are safe!

Please, whatever you do, remember to take care of yourself too!

LJx

Thank you for your (usual) sensible and practical comments, LJ. I shall reflect upon them.

The beds bit may be my default cynicism showing through - indeed one Snr Doctor did say home much safer in terms of infection. 

MacM centres do exist - but I am not able to leave house for more than the 20-30 minute daily shop/chemist visit. (So glad we never took the "retire to somewhere quiet" option!) I could not get my wife to such a place and - rightly or wrongly - I do not myself feel the need for meaningless, if kindly meant, words of comfort - there are none and I don't do pretence.

I don't normally require an advocate and medics don't patronise nor ignore me. More that when visit here my wife is present so I can't be too forthright in my questions. I think some in the profession actually find cold reality a little difficult to express. I've been quite pro-active (yeuk word) so far both in hospital and in getting as far as I have since discharge - I am very conscious that not everyone could be and for them it must be even more difficult. And our daughter has taken on the challenging task of trying to speak direct with the discharge Consultant with some "questions" - if anyone can crack their insularity SHE can (her qualifications and career mean she defers to no one intellectually!). 

I suppose "myself" not helping. I really needed longer to recover from my tongue excision than I secured so keen were the hospital to discharge my wife as soon as I was home. My recovery period was 24 hours. At least I am too busy to dwell on the results of that and what they mean for me over next few months - I go back late next week. Daughter will have to travel here to be with her mum while I am unavoidably out for some hours. Just as for initial tests, diagnoses and treatment so far I'll not be accompanied by the suggested "friend"! 

I know must be worse for many people and that I shouldn't whinge, but hey sometimes the rational slips from my grasp.

Thanks again - make me stop and think!

dj

Hi theres more than mc millan dont know what you have tryed but theres allso marie currie nurses theres a free helpline the numbers on internet .my late wife was widowed before we met she said they were wonderfull with her late husband .yes nhs cutbacks and they say they are putting more into nhs ive not seen it hope you have some success neither of you should be going through this email your mp threaten with papers you know the saying the sqeaky wheel gets the oil but try and stay calme best wishs p

Thanks, Paulus. Calm not my natural state but I'm trying! If no action louder than words next week then yes I shall attempt to escalate this - but to shovel funds into "glamourous" high-tech in-patient facilities rather than on-the-ground old fashioned care and to "devolve" budgets to local and area groups so that Ministers can deny responsibilty for unequal care at local level is HMG policy. And not just in NHS. A large mountain to move...

Hi you dont have to tell me i lost my partner 29th of april misdinosed scans taking ages .we have negligence solicitors on with it but will not bring my liz back .honestly dealing with these people you have to stay cold and calme .and they hate publisity.but as i said ring the marie curry helpline they are cancer nurses to they are realy helpful and it costs nothing normaly. Pallitive care team usualy come out ring your local hospise information center .yes used to fill me with dread just that name but they can give you info and in my case send a team out but liz passed so quick in two days  you should get a ds1500 form that will entitle your wife to a weekly alowance of a out 85 quid aweek haspital should have given you it and asigne a mcmilan nurse. To help with that .you can also get diabled badge theres a fastrack system you ring your county council took liz a week i had to deal with that one as they pussyfoot around cost about 10quid admin fees . excuse grammer i have mild dyslexia . I think its a postcode lottery but there you go hope you have some success as i said nhs hates bad publicity regards p ps sound a bit lame but make shure your partner stays well hydrated it realy is that important .

Hi DJ,

Forget the politics for now, just put a boot up your GP's ****. The GP is supposed to act as the care coordinator. Waiting till she is receptive sounds like an excuse for doing nothing. A call directly to MacMillan by you explaining the situation might help move things forward too

In both my own case and my Mum's the GP chased up the MacMillan nurses, District nurses and in Mum's case Marie Curie nurses. I couldn't fault either of them but I am aware of dozens of cases where the GP has been worse than useless.

Good luck to you both

Dave

Ps as you talk to people get there names and if your dealing with them write there name down in front of them its not there fault thoe its the system they may be dealing with same or worse firm and pleasnt allways works anger dosnt .p

Thanks both. I know of the DS1500, but no-one has mentioned it to me - and TBH way down my priorities. While the in--house MacMillan nurse did make a "referral" to one of her community colleagues the latter told me that not really relevant - have their waiting list and that's that. It does seem that the MacMillan activity in Nottingham City is MUCH better resourced and funded than here - 1/2 mile outside the boundary. And our GP is not IN the City either.

Our GP Practice is better than "useless" - but certainly over-stretched (the next nearest was closed overnight by Care Quality Commission and 3000 patients were re-distributed between 2 or 3 others).I know the GP, the MacM and the District Nurse(s) have spoken/been in contact.

I shall continue to drive events as best I can.

dj

All i can say is we got everything my way but i wish you well in your search must be very frustrating when i said i ment firm i ment ime not going to move till they did something davek will tell you hes worked for nhs .regards p

dj, please tell me to take a hike if this is not appropriate. I have a feeling you would anyway! Have you told your good lady about your own situation? I get the impression everything is about protecting her, which is completely understandable. But you count too. 

The pair of you have no doubt been through many storms together, and have found a way of working that suits you both. Surely she would want to help you out? So if that means sitting down with the doc (even if s/he isn't your favourite person) and discussing future options, your wife would do that if it was of benefit to you?

If it were me, I would want to know how to help my husband, in any teeny way possible. Even if I didn't have long left - maybe even more so.

I'll shut up now, Just have a think about it. 

regards, gamechanger