Rosalind Luff

Not sure if I'm an optimistic pessimist or a pessimistic optimist. Warning my views may contain nuts
Fearing the worst, hoping for better ~ Ripley to Granny W

[Rosalind Luff @ros_luff]

Twitter suggesting I follow myself? Oh dear

[Rosalind Luff @ros_luff]

@casado_porto @BBC were you aware of this? Looks like a scam to me

[Danny Kruger @danny__kruger]

Kim Leadbeater sincerely sought to improve the plight of people at the end of life. Her Bill was the wrong way to do it, as brilliant docs & campaigners proved. Let's now focus on the urgent need to invest in palliative care so that everyone is properly looked after as they die

[Rosalind Luff @ros_luff]

@Rozzah_2210 Andrew, Don, Ed?

[Jim Gamble @JimGamble_INEQE]

If you’re genuinely interested in the context behind this LCSPR and its process and rationale, take the time to listen to this interview. I address the issues raised, provide deeper context and encourage a shift from adversarial engagement towards supporting improvement. #MVPA

[Rosalind Luff @ros_luff]

@naomicfisher could you briefly follow me please so I can send you a DM. BTW I'm not seeking personal advice.

[Jim Gamble @JimGamble_INEQE]

For anyone interested in the handling of the #MousbourneVictoriaParkAcademy CSPR, the following link provides the statements made at the outset, subsequent statements made to mitigate unhelpful public statements, the ToRs, and the final report. They provide useful context. https://t.co/mjdVi2x0ro

[Jim Gamble @JimGamble_INEQE]

My response to Tom’s thoughts. https://t.co/3iPlOqVPZb

[Rosalind Luff @ros_luff]

Congratulations and well deserved

[Rachel A-S @Chuffin_ell]

The rule is cruel, outdated, illogical, and punishes those in crisis.
It needs urgent reform — because disabled people and carers deserve better than losing everything at the moment they’re most vulnerable.

[Stephen Unwin @RoseUnwin]

The truth about the damage caused to families of disabled children by a failing system. https://t.co/KGicWVHmKY

[Stephen Unwin @RoseUnwin]

The trauma inflicted by society on the families of disabled children.
Thank you, Cerebra
https://t.co/bRuMTrhsaN

[Charlotte's Battle Against Glioblastoma (BAG) @alexeades1]

I try to tweet about my daughter, Charlotte, so she doesn't get forgotten. She died on the 24th February 2016, almost nine years ago. She was diagnosed with brain cancer on the day of her prom. 'Fortunately', as she quipped, she had no plans. 'We've found something on the brain,' they said, a 'tumour'.

That day, in July 2013, our lives would change forever. Suddenly, we had a file with a glossary of terms to do with cancer and treatment. Words we’d never heard of, such as 'anaplastic astrocytoma', soon rolled off our tongues. Similarly, I became accustomed to naming, by heart, every one of the fifty pills that Charlotte had to take daily.

In September 2013, we nearly lost her. However, Charlotte, ever stoic, endured the thirty-two days of radiotherapy that was required to keep her illness at bay. She felt tired and she felt sick. Last year I received a diagnosis of breast cancer, I had five days of radiotherapy. Mine was localised to my chest; Charlotte's was localised to her brain. She left those sessions tired, battered and bruised, but onwards she went.

2014 was a ‘good year.' Good, of course, only by the standards of not knowing how long one's daughter might be around. Charlotte was stable and it seemed as though her condition, as life threatening as it was, might be managed, as countless other chronic conditions are, by the occasional visit to the hospital.

2014 was the year that Charlotte became herself. For almost her entire life at school Charlotte was plagued by Generalised Anxiety Disorder. This affliction, which had prevented her from getting the bus on her own, was dwarfed by the immediacy of the situation she found herself in; there were, as they say, "bigger fish to fry." And fry them she did.

Charlotte wanted to tell the world what it was like to live with a brain tumour.

Her YouTube channel did this. From its start, in 2014, to her final appearance, in 2016, Charlotte displayed her courage and stoicism with the utmost candidness and positivity. We have tried our best to continue this by uploading updates regarding Charlotte's BAG, and the work that we do, to Charlotte's channel.

2015 was the worst year. It was the year that all optimism for the future and we held it dearly fell apart. It was the year that Charlotte's grade three anaplastic astrocytoma mutated into the deadly and incurable glioblastoma.

Despite this, Charlotte continued to document her journey. When she filmed her final video, she could not speak I spoke for her. It was for World Cancer Day and, as Charlotte suffered to get her words across, she wanted everyone to know that she was still there, suffering but fighting.

‘When I die, you can take it down. No one will ever be interested in a girl with a brain tumour.' Charlotte's last words in regards to the future of her YouTube channel.

Fortunately, we didn’t we couldn’t. Charlotte left a legacy for all of us to learn and to watch. She showed the life and the fate of a sufferer of one of the most underfunded types of cancer, brain cancer. She never stood a chance.

Glioblastoma is a terminal grade four cancer there is no cure. Watching my daughter deteriorate in her final weeks was nothing other than horrendous. Yet, there are ways to fight this: We at Charlotte's BAG believe that all money should go to world-changing and life-altering research.

The big difference with our charity is simple:
We self-fund everything.
No salaries
No overheads
No advertising No merchandise
We even cover PayPal & PO Box fees ourselves
That means 100% of every donation goes directly to research at Charlotte’s Lab, King’s College Hospital, London, a lab named in her memory.
RT thank you
https://t.co/qGIjBOl3aq
https://t.co/AbRuF0aJV8

[Rosalind Luff @ros_luff]

@BeckyWhin She is looking good. You have come so far x

[Rosalind Luff @ros_luff]

@BeckyWhin That's just wonderful news. Look how far you have both come. So pleased for you x

[Ian Birrell @ianbirrell]

Adults with learning disabilities are dying 20 years earlier than other citizens - and almost 40% are avoidable.

This is a scandal taking place in Britain. But most of our media and politicians ignore it while focusing on their dismal tribal issues https://t.co/DBpZh1XjQl

[Autism Action @_AutismAction]

The Government promised the overdue LeDeR report in early September. Will it - and the accompanying Ministerial Statement - be about saving lives or saving face?

We're looking for:

• Commitment to continuing the LeDeR programme for at least a further five years with on-time annual reporting.

• Making LeDeR a meaningful priority for Integrated Care Boards by putting it back in the ‘NHS Planning Guidance’.

• A national plan to improve the quality of LeDeR data and number of deaths reported, particularly for autistic people without a learning disability who are not yet being adequately included.

• A clear plan to learn from and act on the LeDeR data each year, with an ‘Action from Learning’ report that is more about saving lives than saving face.

Further, the Minister said “We remain committed to continuing to review every death of a person with a learning disability, or who is autistic…” As it stands, LeDeR does not review every one of these deaths, so we will be looking for evidence that it will be extended and funded to do so.

Read more via https://t.co/eUM4oGv7UE

#autism #autismaction #learningdisability #preventabledeaths #LeDeR

[Rosalind Luff @ros_luff]

@TWSENADVICE @CPMumma79 Loss is so hard. I was recently looking at a relative's wedding photo and so many of the faces are no longer alive. There is some comfort in the love you shared and the blessing they were part of your life. But it's still gut wrenching. Take care

[Rosalind Luff @ros_luff]

@TWSENADVICE @CPMumma79 Sorry to hear about your mum Tanya. You've had an awful time of it.

[Rosalind Luff @ros_luff]

@BeckyWhin Oh no. So sorry to hear that.