To get irritated that a diagnosis of cancer brings more support?

[brasty]

I know I am really, but it is still irritating me.

A relative is dying. She has a whole range of things wrong with her including heart, kidneys, lungs and associated problems with these not working properly. She was recently diagnosed as well with lung cancer. This is not her major problem and it will not be treated, as she will die before the cancer kills her. Although she is on oxygen. But because of this diagnosis there is suddenly more support available if she wants it. From MacMillan nurses to Maggie's Care Centre.

And what annoys me that is that this is based on a diagnosis, not medical need. Before that diagnosis all she was entitled to was benefit help towards the cost of a carer, which family are topping up so she is looked after properly. Without the carer she can not even get out of bed, so she needs someone to look after her. But there has been no extra help with other diagnosis.

Could you ask her GP for a referral to the local hospice team? There is an ever increasing focus on palliative care for non-cancer diagnoses. The team should be able to advise you. There is probably a lot more available than you're aware of, it's usually more disjointed and harder to access unfortunately.

I came in to say exactly what @CantChoose said. Your GP is the gateway to hospice and district nursing care.

She has had a referral to the hospice. They showed her round the hospice and told her there will be a place there for her last days, ad helped get more money for more hours for the carer. And a worker talked to her about the importance of planning her funeral and saying anything she wanted to say to loved ones. There is no other help available.

It does seem wrong and I sympathise. I guess the charities have to have strict criteria as they can't help everyone and McMillan for example is a cancer charity. Are you sure there aren't other charities that might have helped with your relative's previous diagnosis? I know those can be difficult to find.

Really? my DH has cancer and support is thinly spread - and none of it at home.
All illness is shit, especially the terminal sort. I'm not sure comparison is helpful.

She is not entitled to district nursing care yet. From past experience that only is available for the last weeks when someone is dying. It is too soon for that. Although district nurses were brilliant last time.

People think there is a lot of support available when someone is dying. There is if you have cancer, there is very little for other people. Although relative is actually getting good care as with money we are providing, the brilliant private carer has enough hours to look after her well.
I have looked after a dying relative before, with no help until last few weeks. And I am not in position to do it again.

FuzzyCustard Yes sorry, I am probably being unreasonable, I did say that.
But I know where I live McMillan nurses do visit at home terminally ill cancer patients, and we have a Maggies Centre that provides lots of support to terminally ill cancer patients and their relatives.

Yanbu to be frustrated and angry that our health service is unable to support your terminally ill relative. I am so sorry that she is going through this. The services you mentioned are charities. They have to raise masses of funds to provide additional support for terminally ill people. My friend died last month at home. Was nursed by his wife for 3 months. They had support from charity funded hospice staff for a few hours a week, and nhs carers for 30 mins a day. His wife did everything else. She could not leave him for a moment. She relied on friends and family to shop for them get prescriptions, walk their dogs, sit with him while she showered or slept. End of life services in our area are in a pitiful state.
Despite a terminal cancer diagnosis his needs were far from met
I hope that your relatives recent diagnosis does get her more support, and makes the rest of her life more comfortable.
I am so so sorry she is going through this.

This is why charities are not as good as a systemfor meeting needs as state care - you end up with lots of money donated to certain causes and not much to others. Even within cancer charities there are differences in funding. Its

I think Marie Curie provide support for all terminal illness, not just cancer. Might be worth a look - I've had a quick look on their website and it doesn't specifically mention cancer.

There should be more support for the dying and their family/carers and this should not be focussed on what illnesses the patient has. It should be done out of decency rather than diagnosis based.

I agree with Fuzzy.

YANBU
We are in similar. My dad has had a failing liver for years, my mum severely disabled. Only help/ break was when admitted to hospital as mega emergencies. Dad now has stage 4 cancer diagnosis, but not much support there either. The daily trips to hospital (an hour or more away) for radiotherapy did him no good. I know he was lucky to get radio, but he seriously considered packing it in. He's not eligible for chemo or surgery because he's too unwell through his liver. I was consistently having to take him to wasted appointments were you were whole afternoons at the hospital due to waiting times, for them to say "not much we can do, sorry!" I got so ANGRY about it a while ago, my dr signed me off work as I was a mess frankly trying to look after everyone.
It's shit, and I sympathise with you

Pananny Yes awful. I am glad you are least had a hospice nurse helping. When I nursed my dying relative I had no one until the last few weeks when the district nurses came. But she died from a rare disease where the only charitable help was information.

And agree that essential needs like this should be met by the NHS, not by charities. The NHS carer payments would make sure my relative was fed and washed, but it would be very rushed and there would be no more than the minimum done. Instead because we pay extra the carer has time to do things like cut and clean her nails, soak her feet which get very sore, clean and the house tidy and actually chat to her while doing her duties.

Our local Hospice has a day centre and a place where patients and carers can have complementary therapies and counselling free of charge.
The patients have a variety of illnesses that include cancer. They also have Community nurses that go to patient's homes.

Just seen Marie Curie nurses provide overnight free care. I could have done with that when nursing my dying relative as I had to get up about 3 times a night on average and was exhausted.

We have some help from Macmillan (counselling, general support and cups of tea) but have to travel 80 miles round trip to access it at the hospital where DH has treatment. They have been emotional life savers for us.

Hospices take patients not just with cancer but with other terminal illnesses such as end stage COPD, end stage heart and kidney failure, motor neurone disease etc. there are also specialist Nurses available for these illnesses not just for cancer. I work for macmillan as a benefits adviser and we able to help people with these illnesses as well as cancer patients although admittedly it is mainly cancer patients we deal with as Macmillan is a cancer charity.

I guess what I ma saying is that support should not be diagnosis based, but needs based. I am guessing my relative does not get more support from the hospice because there may be more needy patients. She is officially under hospice care, which just seems to mean there will be a bed for her at the very end. She lives in an area with a very large older population, so demand is probably high. Although not ideal, I can accept that more than someone with the same or even lesser needs getting more support because of their diagnosis.

Barely any support for my Dad's cancer. We did all the care and looking after him. Macmillan Nurse came round once to advise of palliative care then came for 15 mins each week to see how he was and let us know each time how long was left.

She recommended a Marie Curie Hospice who refused us a place as we were managing. Truth was Stepmom gave up work to care during day, I did the nights then worked days at my job. I was surviving on 15 hours sleep a week.

His final three days we finally got a community nurse who came to change his pad and when she came on the morning where he had already died during the night, she told me he was still alive and heavily sedated. Macmillan Nurse came and said actually no he's died and phoned an ambulance.

Once his body has been taken away a couple of hours later, District nurse came back round to see if we had phoned the hospital to get the equipment removed as we shouldn't really be holding on to it as others in need need it. She had a shit attitude and huffed and puffed and said, "I suppose I'd better phone then if you're not going to do it"

So no, I don't think cancer patients get lovely treatment, support or access, certainly my Dad didn't. He was treated almost like there was no point as he would always be terminal.

What is your relatives main illness? What sort of support are you after or would help?

EmilyChambers So sorry to hear that.

Her main diagnosis is heart and kidney failure. I guess in an ideal world it would be good not to have top up the carer money so that she is properly cared for. But will continue to do that.

Where I live, I know the district nurses have been amazing, so sorry to hear that is not always the case. But yes they only come at most in last few weeks.

My DF is in hospital on an end of life pathway, because he does not have a cancer diagnosis there is very little support available. Even the palliative care nurses admit there is inadequate support for none cancer terminal illness. Marie Curie may be of use to you.

Fuzzy Glad they have helped emotionally. I know most Maggie Centres are in main hospitals, that is because they are expensive to provide and nearly everyone is going regularly to hospital anyway.

Best wishes..

But DH had cancer...no support at all...we were left to it..

Penfold Yes my relative is on an end of life care pathway. That is how the referral to the hospice happened. Interesting to hear that the nurses agree that there is also inadequate support for non cancer terminal illness.