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Palliative Care - Page 2 - Carers UK Forum

Palliative Care

Share information, support and advice on all aspects of caring.
Bell what you say is so true regarding cancer care and hospices. My 27 year old son has to attend a Children's Hospice because there is no where else for him to go. The children's hospice are trying to kick the older boys who have lived longer than expected out but there's nothing out there for them. They were trying to get it set up so that the older young men with DMD would be able to use the services of the Marie Curie hospices but it all fell through and came to nothing. I found out that cancer causes 10% of palliative care deaths but receives 90% of the funding - how is that in the least bit fair?

Eun
I found out that cancer causes 10% of palliative care deaths but receives 90% of the funding - how is that in the least bit fair?
Eun
It isn't, but the public gets, what the public wants. And for every 50p paid by the donors to the hospices, the poor old NHS has to contribute another 50p, in Scotland anyway. (last time I checked), which is money they can't give to other, equally needy, palliative care groups. Its a sort of emotional lottery. Take it up with your MSP, by all means. But these kind of historical disparities are rife! ( btw, given the significance of the day, if you ever have the chance to do some research, check out the long term consequences of giving Polish WW2 veterans their own, Polish speaking, hospitals in Britain. Hilarious how these kind of emotional decisions come back to haunt us.)
Eun, it's difficult because I guess we all know someone who has at some point been affected by cancer, certainly in my family. So we have all been thankful that the hospice movement has been there when needed BUT there are obviously so many other families battling each day to make the "end of life" for their loved ones as pain free and peaceful as is possible but because they do not have the big C are not given any priority for hospice care. If I'm honest if it wasn't for my continued pestering of the GP and literally begging the hospice in tears to help Mum, I don't think the referral would have been forthcoming.

Of course the hospice isn't there just for the end of life and provides valuable support to many for a considerable time. This, together with the valuable respite that families receive makes me so angry that these facilities are not available for everyone. It seems crazy that in 2012 organisations that provide such care and support are often totally reliant on donations and fund raising activities.

Your son and the many others sadly in similar circumstances deserve so much more.

Tony and I have a piece of land earmarked for a hospice which is going to be named in memory of his son Sam. All we need now is to win the lottery to buy it!

Bell x
Funding for all health and social care issues opens a stack of cans of worms: e.g. many people argue that, because of the vocal and PC support of so many high profile A list celebrities, AIDS/Hiv funding from both private donors and government has also been grossly disproportionate to actual need on the ground. Aids is 'sexy', Down's Syndrome is 'cute', but dementia - a far greater problem - is neither. Get stuck in to these debates, lobby, organise, get angry, because whilst many of those in power are well aware of the real disparities, they also feel unable to change things because the lobbies have a stranglehold on the media.
Hi Charmian, How are you?

Please dont let this negative talk stop you getting the support and help that you and your husband need. And do come back and let us know how its all going

xx
I wish I had some words of wisdom that could help, I care for my mum with COPD and completely agree about how good the COPD nurses are, their support for mum have been fantastic. I sure this is a road I will travel with mum sooner rather than later as she deteriated so much in the last 6 months it's frightening to think ahead,as she is such a fighter which has got her through some bad times but her strength is slipping away. I hope your journey is smooth with times to laugh, my thoughts are with you xx
Hi Charmian,
Just wanted to say we are all here for you.
I cared for my Dad who had COPD, and later diagnosed with lung cancer, the palliative care team were wonderful.
xx
Hi Charmian, like everyone else, I am right there with you, and your post affected me so much. I am 46 and care for my beloved hubby, who is 77, has copd and asbestosis and severe arthritis, so I know what it is like. I also wish I had some wonderfully wise words and insights, but all I do is worry every day. I don't know how close or far we are from the palliative care stage, frankly the thought brings on feelings of panic, but I know the time isn't far off when i have to seriously think about reducing my hours at work. At the moment Hubby won't discuss it, as he thinks the minute he gives into it, that will be the end. Sometimes it's only sheer will power that gets him through the day. But next week when i'm back at work, I am going to start looking into it.
Stay strong, we are all with you.
Phoebe x
I try to picture life`s circle as a round trip of the world. There are hills and dales, twisty sharp bends and many crossroads. There is no "one right way" to go on this journey and we have to deal with the daily ups and downs often in totally the wrong gear, but positive mental attidude goes a long way to reaching the next destination.

Having the palliative care team on board does not mean life will be extinct in a shorter period of time, and sometimes it is many months from assessment to need........but if the assessment has been done, and a plan has been made, help is a phone call away when you need it (a bit like the RAC or AA).

I hope you don`t think I am making light of a very serious subject, but sometimes there is comedy on the dark side.xx
I seemed to have opened a "can of worms" here with regard to palliative care. From what you are all saying, cancer care seems to get priority. I can understand that, because 5 years ago I was diagnosed with ovarian cancer. The hospital was amazing, with specialist "nurse/carers" seeing me every day in the hospital to talk/listen/solve any problems. After surgery,(carried out by the brilliant Mr Gianopolis) and eventually beng discharged home to "get my strength up" for the chemotherapy, the Macmillan Nurse telephoned immediately and came to the house to talk and comfort me and my husband. She was absolutely wonderful and I am so grateful for her kindness and practical suggestions. Here comes the the "miracle bit". After weeks of testing in the Histology Lab, they found that one tumour was benign (2kg) and the other tumour (4kg) was just pre-cancerous. Talk about a "close shave". No more treatment needed. Phew! and phew, phew, phew again!
To get back to what you are all saying, it seems cancer is top of the priority list, and all other "life limitiing" illnesses are the bottom of the list. How can that be. If somebody has a life limiting illness (whatever it is) they should all equally receive the same level of care! My darling husband is suffering (emotionally and physically) just as much as a cancer patient. Apologies to those carers out there caring for loved ones with cancer, I'm not saying cancer care comes bottom of the list. There shouldn't be a list. Everybody suffering from whatever illness should be absolutely equal. I think COPD is looked down upon because in most cases (not all cases), it is as a result of years of smoking. So the health service considers it a self-inflicted illness. So, what if it is? There are many cases of cancer caused by drink/obesity/junk food/and generally living an unhealthly lifestyle. This is not "frowned upon" though. It seems that smoking related illnesses are just ignored. You have to remember you "young people" out there, that when me and my old man were young, we were bombarded with advertising on television and billboards everywhere that "smoking was good for you". Yes really, that was the constant message by the tobacco producers. We were "sucked into smoking", just as McDonalds these days advertisie so called "healthy burgers" Healthy burgers indeed! What a load of old cobblers!!!!
We are still waiting to hear from the Palliative Care Team........