Every year in the UK the BBC (telly people) have a televised event called Children in Need. The programme is designed to encourage members of the public to donate money to Children in Need (a corporate charity) which in turn helps children who are in need. On Friday night the programme generated about thirty one million pounds. According to the CiN official website their vision is to ensure that 'every child in the UK has a childhood which is safe, happy, and secure and allows them the chance to reach their potential.' No matter what you think of shows like this, it does aim to help many of the smaller charities that are desperate for funding in order to continue with their services. A few examples are children's hospices, young carers groups, bereavement services etc. In fact a link of them can be found here (pdf file).
During the show, in between entertainment (depending on what you call entertainment), there are short video clips of the sort of projects that CiN helps and so it will feature a family who are dealing with a difficult situation and how a project they attend such as a hospice etc helps them as a family.
It was during the programme that I made the mistake of idly scrolling through my twitter feed. I read a few 'tweets' (I say it like that because I feel old) and a selection of people with Cystic Fibrosis (you may recall that I have Cf too) were being a bit, you know well quite uppity about it. The tweets I read ranged from:
'Children in Need takes away from other charities like Cystic Fibrosis.'
'Why is Cf never shown on CiN is it too much to ask to get Cf awareness?'
'No Cf shown for us :o( (unhappy face).
The one that finally made me crack and respond wasn't until the next day when I read:
'Cf is a forgotten disease :o( (unhappy face).'
Arghhhh! Cystic Fibrosis is hardly a forgotten disease and yes I know I shouldn't have been wound up by a comment from someone on twitter who I don't know when it's hardly the best place to get your point across. However if Cf was forgotten then I wouldn't be sat here now. Cf patients overall have excellent support and care (yes, I know there will be the exceptions) but the NHS fully recognises it and the treatments for it are at least there and mainly available. We have Cf clinics, Cf nurses, cf doctors, physios, psychologists and dieticians. And on a bad clinic day you might get to see all of them and you want to kill someone by the end of it.
So with that in my mind I made the mistake of hitting 'reply' and simply saying 'It's hardly a forgotten disease.' This unleashed a torrent of bitchiness. Ooops. The 'bitchy' comments were from the same few people but the initial comments about Cf not being shown on the children in need programme were quite widespread and frankly unnecessary.
I went on to say that I didn't think Cf was left in the shadows and that it is good for the smaller charities to get a look in because it is. Of course it is. One programme can't highlight every single charity. I then got accused of implying that Cf gets enough awareness. 'Don't you dare tell me that Cf gets enough awareness because it doesn't,' said one over excited tweeter which was weird because I didn't. Sometimes people will only read what they want to read, a bit like Daily Mail commenters. My almost favourite was 'Don't say I shouldn't raise awareness for Cf (angry face).' Er okay, I won't. Thanks for the advice.
The services that CiN help may also in turn help children with Cf anyway such as play schemes, bereavement services and hospices. In fact I know of a few people whose children with Cf go to a hospice for respite care. It helps all the family immensely. Just because Cf isn't mentioned in a programme (incidentally, Cf has been mentioned on the show in years gone by) doesn't mean it is forgotten. The fact I don't have a problem with Cf not being shown doesn't make me weird, heartless, a fucking idiot, silly bint or otherwise. Nor was I accusing people of forgetting other charities existed. Why on earth would I make such assumptions? I do think people get carried away in their own little world though. The simple fact is that I don't think Cf is forgotten. Children in Need happens to highlight smaller schemes and charities and I don't see a problem with that. It doesn't make me heartless. As one friend who happens to have Cf said to me 'CiN to me is more about the obscure illnesses, grief and poverty.' Even my teenage son doesn't see how one show can be responsible for trying to highlight everything and believe me he'll be the first to get frustrated about lack of understanding.
At the end of the day having an illness that people don't understand can be as frustrating as hell but to be honest all the awareness in the world will not necessarily get across how Cf affects people because it is such a complex and individual illness. I'm just relieved if someone knows what it is if I ever need to explain it (especially to a Gp, ha ha etc) but then it's down to me to explain how it affects my life if I choose to do so. I hope that makes sense.
So to summarise, I have not or have ever said that cystic fibrosis gets enough awareness. I have not or ever said that people shouldn't raise awareness. I do however think some people get too wrapped up in their own world and forget to see a the bigger picture. Not everyone, just some people.
Just a quick edit - a friend with Cf just told me that Children In Need paid for her physio bed quite a few years ago.
Quick edit two - Children in Need has helped fund The Lime Arts Programme: 'Lime art has an ongoing partnership with the Manchester Adult Cystic Fibrosis Centre. We deliver a rolling a programme of arts projects focusing on engaging patients in creative activity. Professional artists specialising in different media, i.e. music, animation, painting and drawing, creative writing, work one to one with patients during their stay on Pearce Ward.'