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.

I totally agree with you. This is far wider than just palliative care though. It also affects funding into research, care and treatments. I think it’s because the word cancer sends shivers down most people’s spine.

I remember a few years ago the government ring fencing funds for cancer treatments because its politically popular to do so. It seems to me the only ones, not afraid of cancer are those, who are chronically or terminally ill with another ailment.

Brasty. Sorry I wasn't clear. The hospice were only involved for the last few weeks. He was diagnosed in May and died in September. No treatment. He was healthy in March. Went to bed in April and rarely got out of it. The hospice was not specifically for cancer. He had no extra support because he was dying of cancer. So much depends on postcodes.
Carers came after a month or so because his wife is disabled and my friend was her carer. She was physically unable to help her husband who was twice her weight and a foot taller to the commode or move him in his bed etc.
Things are very very wrong with our health service
There are some incredible services and incredible staff.
There is also severe under funding.

(appeared healthy in March) obviously he wasn't.

Her main diagnosis is heart and kidney failure

Have you tried contacting the British Heart Foundation for support groups? It might help a bit more knowing you are not alone in this.

Hi Emily,

The local group runs sessions on how to live healthily with cardiac problems. Great for someone recovering from a heart attack so very important, but irrelevant to someone on an end of life pathway

Yanbu, and theres also a postcode lottery which affects what support is available where you live.
I really do appreciate the work that charities and volunteers do, but they should be as an addition to healthcare provided by the NHS, not instead of it.

It probably varies. My MIL had wonderful support from the local hospice. She went to the day centre and when the time came for her to be admitted the sister from the day centre went over to meet her and settle her in her room and introduce her to everyone. If we had paid thousands we couldn't have got better or more supportive treatment. My uncle in another area got far less support and had to go into a nursing home for the last few weeks. It was OK but nothing like the hospice.

"People think there is a lot of support available when someone is dying."

I don't think they do, sorry. As people's experiences here prove, it's very patchy and relies on charities covering gaps and still it's very much less than what most people need. Yanbu to be irritated about the lack of provision in general but to start getting narked because some illnesses have a bit more help is misdirected.

YANBU

A relative has had motor neurone disease for several years. When she was diagnosed with cancer (frankly the least of her worries compared to MND) she was amazed at the substantial increase in offers of support e.g. the offer of hospice care which was not previously available

Motor neurone disease is a terrible disease. This is what I nursed a relative with.

There are no Maggie's centres within MILES of us...they do online support but face to face would be hours away. We use the Macmillan centre.

AIBU about this as I said in my opening. It is just so shit that essential care is left down to charities like hospices. Which of course becomes a lottery.

I wouldnt wish cancer on anybody, but, my lovely neighbour was dying of emphysema. He was on home oxygen and in huge distress. His elderly wife was struggling to care for him with virtually no support.
We were cooking and shopping for them.
Then his GP noticed a tiny skin cancer and was able to tick the appropriate box.
The next day a team of people arrived from hospice at home.
He died a few days later but at least he got the care he needed.
End of life care is very hit and miss IME.

There are definitely more resources available to follow up a cancer diagnosis compared to cardiac/renal/pulmonary diagnoses. Which is not to say cancer patients receive the support they need - I have noticed that older patients are less likely to do so.

However I work in the NHS and cancer patients are much more likely to have a specialist nurse/team who will discuss a care plan and refer to other services inside and outside the NHS, or even just signpost these. In practice the care may be poor, but at least it theoretically exists.

In other services patients are more likely to essentially be given a death sentence in an outpatient clinic and wander out without really knowing what to expect or do next. They might be lucky and have a good GP, but if not there is no net (even theoretical) to catch them.

Macmillan isn't just for cancer patients, more recently they offer their services to other chronic diseases.

PaintingByNumbers Sat 25-Nov-17 15:05:35
"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."

This.

waiting That may be true, but it is not what they say on their website. They say clearly they are a cancer support charity.

Tawdry Yes my relative is on an end of life pathway. She is officially under hospice care. In reality this meant 1 visit to the hospice and 1 meeting. There is nothing else available. I actually have a friend who is terminally ill with cancer. She is still working part time and actually gets more emotional support than my relative who is nearing the end of her life.

My relative does have family who care and we are all contributing financially to pay for a decent private carer to give lots of care. She has no money beyond state pension and benefits. So my relative gets the care she needs. But without family support she would be in a pretty dire situation. Family give emotional support.

I guess it scares me as well because I have a very small family and could see myself elderly and without much support. I have a chronic illness, and the charity that works in that field is incredibly underfunded. Anything that happens is run by volunteers. There would be no support from the charity if I was dying from this illness, which I have a strong likelihood of doing.

I remember reading about a mum with a child with severe SEN but no definite diagnosis. Some children with learning and physical disabilities, are clearly severely disabled, but nobody really knows why. This mum was saying that if her child had certain diagnosis, then there were charities that could help practically and emotionally. As it was, there was nobody there to help.

Charities should be about the extras. So holidays for disabled children, make a wish, those kind of things. It should not be about essential services.