**Trigger Warning** Title edited by MNHQ "Are some people being denied care at end stage terminal cancer?"

[lottieandmia]

My mums work colleague has been taking care of her mother who recently died of cancer.

Apparently she was unable to get care for her and her poor mother died, screaming in pain and with fluids coming out of every orifice :(

I'm horrified - I thought it was everyone's right to have morphine at end stage cancer. Is cancer care becoming yet another victim of cuts to the NHS?

My ex dp died recently was looked after very well in the local hospice. I think they rely heavily on donations/ fundraising etc.

It was such a traumatic time for my ds I don't know how we would have got through it at home

I'm an ex district nurse. No way would I ever choose to die at home. Families are promised all sorts of help in the community, often by hospital or hospice staff (where there are a lack of beds) but IME the primary care resources are often not there. Insufficient staff, heavy workloads of palliative care, breakdown in communications between agencies, waiting on end of life drugs and pressure relieving equipment to be delivered etc etc. The promises do not live up to the realities.

My dad died at home with a morphine pump.

The GP in the last few days said he needed to be in the hospice for pain reflief. But when he rang there was no space in the hospice. Apparantly the local hospice is now mainly used for respite type care rather than actually dying, at least that's what the GP said.

Anyway, most of the time the pain relief was good. A nurse came twice a day to change the morphine pump. We had their phone number so we could ring for rate change or a bolts dose. Problem was from us ringing to them coming out, there would always be a delay, often of a couple of hours as they were busy.

So yes, I could see someone being in too much pain.

If anyone ever finds themselves in that situation, call an ambulance as unbearable pain is an emergency. They will administer morphine and call in a community nurse team.

That sounds awful OP.

I have no idea about what care is available around the country.
My DH died at home recently, and I couldn't praise our local GP team enough.
DH's GP was part time and the last couple of weeks was calling in to see him every day that she worked. The week before he died she was away on one of her normal days and arranged for a colleague to ring to check in. DH deteriorated that day so I rang the surgery before the GP had a chance to call me, he came out and did a home visit, assessed the situation, talked separately to me about what was likely to actually happen in the days leading up to death (although he thought it was probably weeks rather than days) and gave me his mobile phone number on case I needed to contact him over the weekend.
He then called me morning and evening over the weekend, responded to my call to him during the day and came out and did a home visit to give DH a booster shot of painkiller and to write up an increase to his syringe meds. He wasn't "on call", and his actions avoided what I'm sure would have been lengthy waits that would have occurred with the on call team.
DH's GP then telephoned and visited over the next two days and on the Wednesday when she wasn't working her colleague again stepped in, telephoning me in the morning and coming out to see DH at midday - by coincidence he actually arrived just as DH was dying and was able to deal with everything.

The District Nurse team was also good, although the administration left a bit to be desired with various teams saying they weren't responsible (we are apparently on a border) - but the actual nurses who came out both on the daily shifts and the on call team at night were also fantastic.

DH wanted to stay at home if possible and I wanted that and to facilitate it for him if I could.

I'm glad we were able to and that his actual death was very peaceful.

chasing

I've also been incredibly shocked how much of the care is provided by fundraising.

The charity that supports our local cancer hospital does a lot and I knew that - the new CT scanner, tea ladies, comfortable chairs, volunteer drivers and the cafe etc.

The Clinical Nurse Specialist seen at every appointment/change of drug - funded by the charity... I was gobsmacked by that. Who else was going to deal with the side effects etc if not the CNS? We only realised she wasn't nhs funded when she was mentioned in the charity magazine!

Due to budgets being so tight there's also a passing of the buck where possible. It took us 16 weeks to get a piece of equipment she needed because no one would accept it was their job to fill in the form, and we ended up buying her a wheelchair because the wait for one was around 18 weeks - that's no use to someone given 6-9 months and told to make the most of it.