angiedeacon

Is there anything better than a holiday?

Views my own

[angiedeacon @angiedeacon]

@BeccaBarry What about those with needs not met by NHS pathways despite international consensus. There is no referral, there is not even a list to wait on #nutcracker #MALS #SMAS #multipleAVCS #AVCS #EDS #bendybodies #nottoraretocare #POTS

[angiedeacon @angiedeacon]

@DrSeanMon @UKPoTS @terry_segal1 Maybe start looking at compressions like nutcracker and MTS as the cause.
I think 10 years ago their was a belief it was exceptional children that developed POTS. Now it seems it was children from privileged backgrounds who were able to access appropriate care who were diagnosed

[angiedeacon @angiedeacon]

@Dan_Wyke My daughter has compression in her arteries causing disrupted blood flow. Completely disabling. Doesn't even need more research just the recognition and correct treatment and she would have her life back.

[angiedeacon @angiedeacon]

@DrRebeccaRyan My daughter is about 7 months into a hospital stay. Doesn't actually need TPN, fluids keep her well enough to eat. Line infections blamed, however infection source seems to be an embedded UTI

[Rebecca Ryan @DrRebeccaRyan]

So no more saying to patients, it’s too risky to give you TPN, you may get an infection. It’s much more preferable to let you starve to death instead.

[UNISON - UK's largest union @unisontheunion]

Mental health counsellors working for @NorfolkMind at @NSFTtweets are back on strike today over pay and grading.

“Charity bosses @MindCharity should be ashamed that they're paying trainee rates for such crucial services,” UNISON general secretary Christina McAnea

[angiedeacon @angiedeacon]

@DrRebeccaRyan So, have now found out only 29% of blood flow is returned to he heart when standing compared to when laying downand she was having a good day. The professor was 100% certain her POTS is from compressions. MALS/May Thurner/Nutcracker/Pelvic Vein/TIS

[Janet Dafoe @JanetDafoe]

So shameful.
Not a single bed set aside to treat ME in any UK hospital, says NHS director | ME / Chronic fatigue syndrome | The Guardian https://t.co/HXNXYmii7S

[angiedeacon @angiedeacon]

@TeamKarenGordon My daughter with POTS (less affected by ME/CFS) has had TPN. UK based.

[angiedeacon @angiedeacon]

@lapis_lazuli11 I am the parent in this situation I am so glad I saw the damage that was being caused but standing up to the psychiatrist made the situation much worse for my child.

[Larry the Cat @Number10cat]

I pull this face every time a member of the government or Conservative Party says or does something stupid. I haven’t changed my expression for at least a year now.
(Photo @politicalpics)

[angiedeacon @angiedeacon]

Well done to this Dad. Sadly this amount doesn't even begin to cover the true cost of a child's failed education. #send #sendsos @suffolkcc https://t.co/RKLaJeLQ1r

[angiedeacon @angiedeacon]

Draconian & Dangerous

[Trades Union Congress @The_TUC]

BREAKING 🚨🚨 | The government has announced that it plans to WEAKEN workers' rights - including key protections for:

• Safe working hours
• Outsourced workers
• Equal pay

[James Martin @jamesmartinchef]

RIP one of the very best

[UNISON Eastern @UNISONEastern]

Marion and her colleagues took action yesterday against Pot Kiln Primary's bid to slash 10 jobs.

Hear her explain why.

[Tim Roberts @TimRoberts76]

Started my day by joining these inspirational ⁦@unisontheunion⁩ women on strike today to protect jobs and the education of pupils they care deeply about. Lots of support from parents. ⁦@suffolkcc⁩ must listen and stop the cuts to jobs at Pot Kiln School

[angiedeacon @angiedeacon]

Who needs to hear this and listen @suffolkcc ? Is this going to add to more children #failedbysuffolk

[Winston Dorsett @Dorsett70]

Lots of support from parents and public in #Sudbury for @UNISONEastern campaign to stop mass redundancies of Midday supervisors and learning support staff at Pot Kiln school . Job cuts will harm some of most vulnerable pupils. Please add your name to petition….

[Jack Abbott MP @jackabbott90]

With @mamajasper and many other families which have been #FailedBySuffolk.

A #SEND system which leaves children and parents feeling isolated, exhausted and broken is a system completely unfit for purpose.

For years we've fought for real change, and we'll keep fighting.