Last Wednesday I attended a day for brain tumour carers, organised by the Brainstrust charity. It was the first event of its kind that they have hosted.
I participated in workshops on depression and communication, which were interesting and informative. By far the best part of the day for me, though, was the opportunity to chat informally to others in a similar situation to myself.
I spoke to people who had terrible stories to tell, but there was also quite a bit of black humour and people having a whinge about their brain tumour patient. B’s ears must have been burning! Haha. Many attendees were fulltime carers – the logistics involved to free up some of them for a day was astounding. Hence, they don’t get out much. Had the gathering been held in Vegas rather than chilly Birmingham I suspect I would have seen (and participated in) some Prince Harry-style strip billiards as the carers let themselves go on their day out.
Here are a few things I learned:
- carers are no more innately ‘caring’ than anyone else – they have just stepped up to what is required in a pretty crap set of circumstances
- carers have a lot of anger towards the NHS
- carers get little to no support from the government
- many carers have no choice and feel trapped
Fewer than half of the people at the meeting had an NHS ‘key worker’ allocated to their case – supposedly a national initiative to personalise the cancer pathway for individual patients.
I recently read that as an issue, “caring is almost 20 years behind childcare… caring in 2012 feels like the disability agenda circa 1995”. I think it’s at least as bad as that, possibly worse.
The carer’s allowance is a paltry £58.45/week. How is someone who has been forced to give up work to care for an ill relative supposed to live on that? And if you already get the pension forget it, because you don’t qualify. That would be excessive, and no doubt lead to carers stocking up on Cristal and caviar at David Cameron’s expense.
Thanks to Brainstrust for organising the day and helping to create a much needed network for brain tumour carers. I hope to attend again next year if it becomes an annual event.