"Apart from anything else 76% of charities are run by people unqualified to do so, so aren't able to provide the support they claim effectively."
Could you provide a source for this statistic, preferably broken down by type of charity, e.g. schools, charities whose sole activity is making grants etc?
What are the criteria for being qualified to run a charity and who do you regard as running them? The trustees or those, if any, that they employ to do so?
Most of the charities I've been involved in have had people running them who were eminently qualified to do so, be that small charities (such as one I was a trustee of that had very little funding and was a vehicle for helping women to engage in community regeneration) or much larger ones.
For example, I'd have thought most educational charities have an experienced teacher as chief executive. There are a lot of problems with some of the charities providing healthcare, but I see no evidence that either their CEOs or chairs are significantly differently qualified from their NHS counterparts.
My two nearest hospices function as charities. Neither has been embroiled in any scandals and they have an excellent reputation as to the healthcare they provide. Their deficiency, from my perspective, is not how they function but that they should be needed.
As for vulnerable relatives, I think if you look at the statistics, most of us eventually have vulnerable relatives simply by virtue of age, but I'd have thought it relevant to only a small proportion of charities.
I don't see where you're coming from on the Queen and medals thing. Do you really think that any but a very, very small proportion of those that set up and/or run charities ever get any sort of medal or other official recognition for it?
I struggle with your reference to the charity not vetting those wishing to set up a charity. Our state doesn't vet those wishing to take advantage of other formal structures and tax arrangements in terms of what they are able to do, except insofar as some people may be barred individually from certain activities.
A charity does not have to be nice or decent or efficient. That is not what a charity is. It is what some charities like to sell themselves as, but it is not, per se, a legal requirement. Insofar as there is any regulation as to services provided, that is carried out by regulators, where such exist, relating to specific areas of activity.
Insofar as some are incorporated, they have additional reporting requirements, the same as all companies.
I think that you judge charities in terms of what you think they should be, rather in terms of what the law requires that they be.
However, I do not think that you can have it both ways. You seem to think that charities should be required to operate as if they are functioning as part of the welfare state whilst objecting to any expectation that they should.
I have a lot of problems with how some charities, mainly big well-known ones operate, but I draw a distinction between what they do and what charities in general do.
My biggest problem is where charities attempt to function as political campaigning organisations. That is not the function of a charity as the law established them, and we are long overdue for a new legal structure for campaigning organisations that would be fit for purpose as neither charity nor political party.
I do not disagree with you that charities should make sure they have appropriate consultation and representation arrangements. I do not think that the fact that a charity is concerned with a particular disability means that it should be run just by those with that disability, but if they don't have many of the sort of people that would, but for their relationship with the charity, fall into the category of a beneficiary of that charity, then at the very least they should show some very robust consultation processes.
But again, I think that this is something where you and I will never really agree, because I see a difference between a campaigning or shared interest group, and a charity as a financial and legal structure. My best illustration of why I see things differently is that, for example, I wouldn't expect a private facility caring for people with dementia to be run by people with dementia as opposed to consulting with people with dementia; but if people set up a campaign group or mutual support group for people with dementia, then it would seem to me to be realistic to expect that it would be run by people with dementia, albeit perhaps facilitated by people without.
Which brings us to what probably causes the most differences between us in this - I think that some charities represent themselves as what they're not, or blur the lines.
So, for example, as someone with bipolar disorder, I look at Bipolar UK and wince at some of the twaddle they put out. I remember when they published something online "I'm not bipolar, I have bipolar." Cue a row on their messageboard. That was the point at which I thought I no longer wanted anything to do with them. My attitude was who are they to say what I am or am not?
And that, I think, illustrates it. For me, Bipolar UK is illustrative of those organisations that blur the lines between carrying out functions that meet the legal criteria to be a charity, and giving the impression of being a representative body, which actually they're not.
Which brings us to the sort of deaf charities you like, such as BDA and AOHL. I think I might sound less hostile to them, but I am not a fan. I haven't had any occasion to be up to speed with what BDA does for some years now, but that's because they seemed to have a very one-sided notion of what deafness is. I distinguish that from if they'd been simply taking the view that some deaf people need some support and others need other support and they're the ones dealing with Deaf people who sign and identify as culturally Deaf etc.
AoHL has some good aspects but I'm not sure what they actually achieve. I will admit to having got in touch not long ago to see whether there were any grassroots campaigns regarding hospital accessibility, only to be told there are already national NHS standards, and referred to their cards that you can print off, fill in and give to reception.
I looked. Rather a narrow notion of what people need, to judge by the tick boxes and the very small space available for details. What I need is something as simple as requiring my local hospitals and clinics to be prepared to 'call' me visually when I'm in a waiting room, instead of calling my name out not very loudly and then getting annoyed like it's my fault when I don't hear them.
So that limited recent contact tells me why I didn't stay in contact before.
What I'm tryint to say, On the Edge, is that you and I have an awful lot in common, I believe, in our views. We don't like the way some of the big charities are run. We're not happy with various disability charities and unimpressed with the national deaf charities (or is that putting it too politely for how we feel about them?) We are both adamant that support for disabled people should be a state-funded human right, not a kindness. We both think that support for disabled people should be properly funded. We both think that disabled people should have a proper say in what support they are entitled to and get.
My disagreement with you is simply as to the existence of the tax structure called a charity, overlapping with the issue of whether there should be alternative non-governmental facilities for those that want them.
To say what I mean by the latter - let us suppose that it is accepted that people with a psychotic disorder should have access to support, including groups, and that such should be properly provided by the state.
I would consider it restrictive in a manner I could not politically tolerate if people were then told that they could not set up and run their own support groups as well. After all, we say that people should be able to have access to adequate spectacles on the NHS, but we don't stop them going out and buying their favourite frames or spending more on their preferred form of varifocal whatever.
And I don't see why there shouldn't be a tax concession that distinguishes between commercial entities and those doing public good, which is what charities are, or at least technically are.
Perhaps you and I will stop disagreeing about this if any government gets off its backside and tidies up the law on this to create a different range of structures for structural and financial purposes.
