For the last 5 months, I’ve spoken to Rosy as she’s fought for care. MND means she needs a ventilator and feeding tube and yet she has been denied 24/7 carers. Rosy is now losing her voice but wants to speak out. We should all listen. In today’s @theguardian.com www.theguardian.com/commentisfre... - ThreadSky

francesryan.bsky.social • 35 days ago

For the last 5 months, I’ve spoken to Rosy as she’s fought for care. MND means she needs a ventilator and feeding tube and yet she has been denied 24/7 carers. Rosy is now losing her voice but wants to speak out. We should all listen.

In today’s @theguardian.com https://www.theguardian.com/commentisfree/2025/jan/28/terminal-illness-care-england-motor-neurone-disease

Comments

ursusminimus.bsky.social•35 days ago

This was heartbreaking. I'm glad you helped Rosy speak out and I hope someone who can make changes will listen.

patriciabrayden.bsky.social•35 days ago

Thank you for highlighting Rosie’s situation. Those of us who work or worked in #palliativecare will know that sadly these battles with CHC are all too common

hen01.bsky.social•35 days ago

This was such a powerful article. Thank you for giving Rosy, and these issues, a platform. Our society only seems to place value on those that can be as economically productive as possible. Those that can't, it does the minimum to 'support'. It says a lot about our true values.

arcadiaego.bsky.social•35 days ago

Heartbreaking and infuriating. Thank you for all you continue to do to highlight these issues.

sophieelizabethcox.bsky.social•35 days ago

This is so upsetting to read. It makes a mockery of the current debate around assisted dying and 'choice', when we don't currently look after people who so desperately need support.

david-s.bsky.social•35 days ago

Thank you for writing this, and to Rosy for speaking out.

There are many who will recognise this: "the casual indifference or outright disdain shown to those who dare ask for help"

david-s.bsky.social•35 days ago

Another factor, rarely acknowledged: Unlike social care & mental health, there is there is no such thing as statutory 'CHC Advocacy'

People & families might be lucky, have a local org who can help, but quality varies, it's a lottery.
Even then ICBs / NHS resist.

No one should deal with this alone

stillwaving.bsky.social•35 days ago

Have just read your piece which made me weep with frustration & anger.

morbidsparks.bsky.social•34 days ago

My mother was incredibly lucky to get CHC - aged 62, severely disabled with multiple health conditions. She broke a leg and basically never walked again; when they were trying to discharge her, physios said if she couldn't mobilise she'd be left lying in nappies all day with 2x daily care calls.

morbidsparks.bsky.social•34 days ago

When I pointed out she was already under CHC's aegis the story changed, and somehow she managed to get a live-in carer to support her at home, for the next two years until she died. A care home would have destroyed her emotionally/mentally and wouldn't have been able to look after her the same way.

morbidsparks.bsky.social•34 days ago

It's gutting that so many people can't get the care they need; the ridiculous distinction between 'social needs' and 'health needs' is bonkers. I'm disabled with ME - a medical condition - but it falls under social care. Ditto for dementia patients.

morbidsparks.bsky.social•34 days ago

Come what may, care homes for anyone who would otherwise reasonably expect to be living independently are rarely the answer - anyone under retirement age should have the CHOICE.

francesryan.bsky.social•34 days ago

Absolutely (though would like every age to have choice, completely understand what you mean about working age people)

themoid.bsky.social•34 days ago

My Dad has complex dementia, CHC is horrendous. It is target driven to save money, which is incredibly stressful for us as a family. We managed to get funding and on appeal got over 100k back because he always should have had it. We now have reviews every three months,he isn't going to get better !!

wanderscotwild.bsky.social•35 days ago

This is utterly inhumane. Sadly, budget limitations (especially under the Tories), have always driven service provision. It's so damaging to society as a whole and should not be happening 😥

riverlorien.bsky.social•35 days ago

Thank you - it's such an important piece. More people need to know about these huge gaps in life saving care. It must have been terrifying for Rosie to be left alone. We've known family carers who couldn't sleep at night because no carer was provided to monitor ventilation and suction airways

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