Day for carers

harry

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.

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5 comments

  1. Hi Jill, Matthew my son who does care for me and is in uni Full time can’t apply and my mother in law can’t as she will lose her pension credit and friends who earn over £100 a week can’t get it!!! It’s absolutely stupid.
    Glad you found the carers day informative, I am going to try and get to the Manchester Meet Up.
    Take care
    Karen x

    1. It really makes me mad! Something I forgot to mention – it’s estimated that carers save the country £119bn a year – making it even more despicable that carer benefits and support are so pathetic.

  2. Caroline Folker · · Reply

    I’m so glad you are involved in Braintrust. I read your blog all the time. My brother’s Braintrust story can be found at: http://www.brainstrust.org.uk/andys-story.php
    We miss him everyday.

    1. Hi Caroline, I just read your brother’s story, parts of it are so familiar to me. It just reminds me again what a terribly cruel disease this is. Glad you are enjoying the blog – if that is the right word x

      1. Caroline Folker · ·

        Thank you Jill for your reply. I really didn’t expect that! I live in Virginia in the U.S. and found as I panicked and called every brain surgeon known to man during Andy’s illness, that contrary to public opinion (maybe just the public in the U.S.A) Andy got exactly the same treatment options in the U.K. as someone in the U.S. would (but only if they had bloody good insurance over here) So many people here asked me “why don’t you bring your brother over here to get the best treatment” and after investigation, I realized that just wasn’t so. I guess I am just trying to tell you that I’m sure you lovely partner is getting the best the world has to offer right now. Best of luck to you both. You really don’t have to answer, I’m sure you’re terribly busy but I wanted you to know I am thinking of you. Often.

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