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To Every Politician Past and Present| A Carers Plea For Support · The Letterbox Podcast

• 0:00
  Hello everyone, and welcome back to the Letterbox podcast, the
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  place where real people share the words they've carried, the
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  stories they've lived in, the letters they've always wanted
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  someone to hear. If you're joining us for the
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  first time, thank you for being here.
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  And if you're one of our regular listeners, welcome home.
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  Today's letter is a little different.
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  Mary, the writer, has directed her words to politicians past
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  and present. The letter you're about to hear
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  is both deeply personal and profoundly important.
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  It tells the story of her son Daniel, whose life changed
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  forever after a tragic medical event in childhood, and of the
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  44 years she has spent loving and caring for him.
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  It's also the story of millions of underpaid carers who quietly
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  hold families, communities and our society together at an
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  enormous personal cost. Mary has recently launched A
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  petition calling for meaningful change for unpaid carers.
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  The link to her Instagram page where you'll find the petition
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  is in the show notes. If after hearing her words, you
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  feel moved to do so, we will be so grateful if you would
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  consider signing it. It's a simple action that could
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  help amplify a voice that deserves to be heard.
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  Before I read you Mary's letter, I also need your help to help
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  more people find out about the podcast and hear these letters.
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  So please press the follow button, whatever you are
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  listening, and then share your favourite episode with someone
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  who you think might like to listen.
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  And now, with gratitude to Mary for her story and for doing all
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  she can to raise awareness, let's read today's letter to
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  every politician, past and present, who could have made a
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  difference but has chosen to ignore the plight of unpaid
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  carers. My son Daniel was born a healthy
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  £9. He was my first baby.
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  I was just 19 when he was born. When he was about nine months
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  old he started losing weight. I was told he was just a fatty
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  feeder and I was being an anxious first time mum.
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  I was sent away from both health visitors and later my then GP's
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  office with the same conclusion but both were wrong.
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  Just after Daniel's first birthday I decided to override
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  these so-called experts and took him to A&E.
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  After five days in hospital his legs stopped working and a mast
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  was found in his abdomen. A biopsy was carried out and
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  they found a neuroblastoma, childhood cancer.
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  This would have been bad enough but he suffered lack of oxygen
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  while they were doing the biopsy and he was severely brain
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  damaged. But our lives changed that day.
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  Daniel was changed beyond recognition.
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  He could no longer even suck a bottle.
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  His body was stiff as a board and contorted due to
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  convulsions. He couldn't move any part of him
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  voluntarily. We had an uphill battle but with
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  hours, weeks, months and years of physio we now have a 44 year
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  old man who can bum shuffle around the floor independently.
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  A man who can talk incessantly. Mostly it's repetitive and a bit
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  hard to understand but it's always funny and mostly rude.
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  He is such a character, everybody loves him and he's a
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  big hit at the day centre he attends near our home in
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  Enfield. They told us Daniel was blind
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  six weeks after they brain damaged him.
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  I was heartbroken for him and us.
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  He uses a wheelchair while at the centre but at home we have
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  clear pathways so he can bum shuffle from his room to the
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  sitting room. So he has choice where he wants
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  to be. He's not safe to leave alone and
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  I'm on duty all night for any personal care he might need.
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  I care for 138 hours a week. The only time Daniel is out of
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  my care is the 30 hours when he goes to the day centre.
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  That's hours of 395 jobs. Karen's allowance is 86 lbs and
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  45 PA week. Break that down into an hourly
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  pay for what I do. It's 63 P.
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  You people can't call it a wage because then you'd have to at
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  least pay the national living wage.
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  The second I try to earn more than £204.00 a week, no matter
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  how I do that, EG making stuff to sell on Etsy or holding a 2
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  hour painting class, DWP will strip me of my entire carer's
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  allowance. This effective pay drops a wage
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  of 205 lbs to 118 lbs and 55 pence.
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  Why do you want to keep us in poverty?
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  This hasn't come about by accident.
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  Somebody designed it this way. What kind of person does that?
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  No other benefit has this Cliff edge.
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  PIP has no limit at all. Disabled people can earn any
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  salary and keep their PIP and rightly so.
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  No other workforce is limited like us.
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  Care as to how much we can earn? Did you know that when I get my
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  state pension in two years again my parents allowance will be
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  stripped away from me even though as before I will still be
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  caring. 138 hours a week huh? You didn't know?
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  Well shame on you. You should know US unpaid carers
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  save the UK taxpayer £185 billion a year.
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  That's another NHS. I can't understand how anyone
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  thinks it is right or fair to treat us with such disdain.
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  You all can go and get second and third jobs.
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  Nobody is taking away from you except for tax.
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  You call carer's allowance a basic benefit and tell me you
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  can't have two basic benefits, State pension being another.
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  Why don't you just change the category these benefits sit in
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  and then we won't be quits out when we try to get ahead.
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  We are undervalued, under appreciated and not recognise as
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  assets to the economic or social workforce.
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  Please do the decent thing and when my government petition gets
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  100,000 signatures and gets in front of the House for debate,
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  please vote to change the model it currently uses.
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  This one is not fit for purpose in 2026.
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  Sincerely, Mary Gryphon Porter, Mary, thank you.
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  Thank you for your courage, for your honesty and allowing us to
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  share not only your experience but your unwaving love for
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  Daniel. Your letter is reminded that
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  behind every statistic is a family, a lifetime of sacrifices
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  and her letter directed to politicians to serves to be
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  seen. If her words resonated with you
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  today, please do visit Mary's page in the show notes.
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  It will also be linked on our Instagram page and you'll sign
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  the petition she mentioned in her letter.
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  If you're able to, please do consider signing it.
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  When I last spoke to Mary, she had just over 1300 signatures.
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  She has until the end of October to reach 100,000.
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  She also told me that of the petitions that actually get
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  through, she thought it might be 0.1 that actually get actioned
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  and those are the ones that have well over 100,000 signatures.
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  If you're able to, please consider signing it.
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  Every signature is another person saying we've heard you
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  and we believe this matters. Thank you for spending time with
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  us and with Mary's story. Your willingness to listen is
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  what gives these letters life beyond the page.
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  Until next time, take care of yourselves, take care of one
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  another, and keep finding the courage to say the things that
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  matter.