To disagree with Children in need

Totally agree with you, OP. It is fundamentally wrong that charities have to fill the slack for necessary medical treatment and, in order to do so, they have to beg for money by trotting our sob stories. I have had to rely on charities to fill the - multiple - gaps in the NHS and, without fail, all have strongly encouraged me to give permission to share photos/videos/our story, so they can use them in their fundraising efforts. I don't blame them. There isn't enough money to provide even half of the support needed (though there's debate in the comms community about whether sob stories are actually the most effective way of raising money).

Not the point of your post, but to those commenting that hospices are just end of life care; they are not. They also provide vital physiotherapy, music and art therapy, qualified psychological support, qualified nursing care, symptom management etc., to those living with serious illnesses. All things that should be provided by the NHS.

There was a charity that got blasted few years ago because out of all the donations and fundraising they did, only 3% of PROFITS NOT EVEN EARNINGS, profits .. went to the people in need and it worked out like £12 per person that they helped...

Apparently it's not the only one either, there's an African children charity that hasn't given them a water well in over 8 years and yet earn millions ever year. Money is unaccounted for.

they would love to drive around in a rolls with Chris Evans

I've not heard of this, but if you mean, as I presume, our Chris Evans rather than Captain America, I would think that being anywhere in close proximity with him would be the thinking persons worst nightmare!

YANBU. I know it is irrational, but I always get annoyed when wealthy celebrities tell ordinary people to donate money. I always feel that if they cared that much, they would live simpler lives and donate a higher proportion of their income to charity.

This !

I would of thought they would do it for free

I never watch it, wasn't there something mentioned before about Terry wogen getting paid x amount for presenting the show, I wonder how much the other celebritys get.

Is it maybe because the medical and/or EoL care is only a small part really, relative to the holistic part that hospices do?

The NHS is generally very good at the medical bit, but they don't really do "extras".

I must admit I have never understood why hospices are charities and not part of NHS. Is this similar in other countries?

I have very much acknowledged that at present we don't have much choice other than to rely on charities. I'm just saying that the way we have to do it is problematic.

@drawingmaps I'm not arguing with you, I'm just giving my input that's all. I'm fully aware of what a hospice is and to be more precise it's a lot of end of life/dying patients. I understand your points and I have not exactly said you are wrong. Given the state of the Gov though what would you rather? Because that's what it boils down to and that's all I'm pointing out. So let's strip the CIN and wait on the government and the children's consent yeah cleaver idea. It's also usually the parent that consents to medical treatment for a child anyway so that's a bit of a moot point.

Unfortunately it isn't enough.

The NHS currently in 2023 doesn't have the money to treat even some very old longstanding common diseases well. I am a person who buys her own medication from abroad due to this. My own doctor (!) health travels because her husbands heart medicine isn't funded despite it being a very old drug. Thousands of people are travelling to clinics in Europe - places like Belgium, France and Solvakia for help with relatively common illnesses.

In many areas, they are outsourcing common medical procedures to third party private firms like SpecSavers, who are now doing ear wax procedures, and hearing assessments and follow-ups for the NHS, and so if, like my neighbour, you're a 93 years old, sight impaired lady who has fallen down several times and so relies on her hearing and has blocked ears and are in confusion and distress, the nurse in the local doctors surgery will not perform the syringing procedure. I and my neighbours daughter COULDN'T get this done despite spelling out her circumstances and SpecS wouldn't come out to see her nor had an emergency slot. So her daughter had to pay private.

Some women are paying private for their smear tests.

The wait for autism assessments and Speech and Language therapy for children in some places is so long - as in my sisters SIL's case - that her ability to go to school has been extremely negatively impeded.

Please wake up. The NHS is NEVER going to cover half the specialist extra-medical stuff you see in CIN. It doesn't have the resources, has to make though decisions, and is stealthily being privatised. I can't imagine how bad things would be without things like CIN and charities to take up some of the slack.

I have told both my young boys who are early 20's to get life insurance based on what I am experiencing and seeing.

erm the normal way? don't tell me what we pay towards it is not enough to make sure kids get the treatment they need to stay alive

Hospice is for ill people, who could arguably be called disabled. Parents may well consent, and that's their choice, but is it really a choice when the resources they need rely on them doing it? And the children themselves cannot consent.

please tell us more about your efforts to help children of this country.

What, all people? With what? Really simplistic view.

I can’t watch it as why are we, as a country, pouring shedloads of money to support other countries, whilst we need funding to support our children.

yep, you got it in one OP! it's awful.

helping others is nothing more than us fulfilling our duty as human beings, us paying the immense social debt we incur in our lives.

it's despicable to rob these individuals of their divinity in the feeble attempts to raise a few quid.

Yea well said, @drawingmaps

Access, not pity

@drawingmaps charities aren't just for people with disabilities there's things like St Gemmas hospice that is ran by a charity. I do agree though that it shouldn't be left to the charities and the Gov "should" step up like with many other things. I imagine people or the parents have agreed to discuss past medical history details.

Hear bloody hear. Spot on!

I understand the practical aspect - and that's why I don't tell people not to donate. But that doesn't mean I can't raise awareness of the need for radical systemic overhaul at the same time. Children (and adults) should not have to rely on charity or justgivings etc to get a wheelchair.
Non-disabled children don't have to "pay" for their sports clubs by having their most difficult moments retold on national television. Yes, the funding is essential. No, the way we have to go about it is not good.

@elliejjtiny I really feel for you. Unfortunately the majority of people will never truly understand. Despite my two being autistic with lower support needs, every single accommodation they have I’ve had to fight for and the prospect of having to do so well into their early adulthood and beyond is frankly frightening. I’m exhausted.

Two things can be true at the same time. I'm grateful for the facility built by CIN near me, and I would feel exploited if I had to expose my private medical information with sad music over it on national television. Besides, disabled people being grateful for charity is just a bit icky all round - we want access, not pity. As a PP has rightfully said, if e.g. the government funded care properly, there wouldn't be young carers

@SpaceRaiders exactly this. I worry about this all the time. It was relatively easy to persuade the staff at the children centre to let my non sitting or rolling 13 month old to join in with the under 1's group. But (understandably) nobody wants my autistic 9 year old in the toddler gymnastics class and he can't go to the one for his age as he can't follow the instructions. And it's going to get worse as they get older.