#MKD Patient | Founder & Chair of RACC-UK | Patient Advocate | Member of @RheumatologyUK @britsocimm | Views are my own
Joined April 2009
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Have the guidelines for providing IV fluids to patients changed in the last 6 years does anyone know? #NHSEngland #NHS
I had already discussed reduced output due to extremely sore and inflamed throat, making it difficult to swallow.
8 hours of waiting in blood and I was refused IV fluids by Dr. Granted, I was sat up & alert but this has been a noticeable change for me.
Luckily I did manage to push sufficient fluids through but it just felt unnerving given how poorly I have been this week. Are there new thresholds to administer IV saline / glucose? #hydration
Rachel retweeted
Quite a few of you are asking me why your PIP award was extended out of the blue.
There's a massive DWP backlog, so they put through new laws that allow them to extend claims/reviews.
They can only extend, never decrease your award. They did this so they can focus on new claims
Rachel retweeted
Not only is Helen Whately under investigation for lying about welfare and claimants, but she also wants to strip a £29.20/week benefit from people like the woman who was sexually assaulted and left with severe anxiety and agoraphobia. Oh, and Whately lied in this video too. 🙂
Labour are watering down benefit checks. £ millions more will go out in benefits, paid for by taxpayers.
People getting PIP for things like anxiety, alcoholism, acne...could get payouts for years with no re-assessments.
Labour doesn't care. @Conservatives are fighting to stop this.
Rachel retweeted
Just a reminder that Helen and the Conservative Party is currently being investigated by the UK statistics watchdog for making misleading claims about welfare and social security spending. 🙂 disabilitynewsservice.com/uk…
Today I received a phone call because I became top of the list for housing. I was refused a 2 bedroom bungalow because when I asked if they would be installing a bath in the wet room to meet my medical need, I was told no.
#housingforall #housingcrisisuk
Gold banding with urgent medical need since January, and now landlord has started court proceedings for a possession order. Already had to reject one property as I couldn’t get through the doorway with my rollator!
#accessiblehousing #housingforall
Has anyone in the #RareDiseaseCommunity had success in finding affordable training providers for Tier 2?
#Oliverscampaign #Autism #LearningDisabilities
#Oliverscampaign
It has come to my attention that some providers delivering the Oliver McGowan Mandatory Training are charging NHS & social care organisations excessive & unjustifiable fees
The focus must remain on ensuring that the training is accessible affordable & available
Rachel retweeted
Want to hear the worst 911 call and waste of public resources ever? YouTuber calls 911 to complain someone requested public records about her. For real. youtu.be/9MOtKE3Bsxg?si=iWtv…
Rachel retweeted
Two week reminder to fill in the Timms review into PIP.
I know we have been through countless consultations but it WILL be worse if we don’t push back and it’s vital those in MH respond as we are a key target and our organisations tend to be tamer.
tinyurl.com/3h56djf7
Rachel retweeted
Fears of another safeguarding catastrophe after #DWP stops benefits of nearly 23,000 #ESA claimants
disabilitynewsservice.com/fe…
#Disability #England
Got offered a bungalow last month with a housing association. Went through the verification and affordability checks. Begged for a floor plan from the start. Ignored.
Finally got a viewing. Couldn’t get through the front door independently with rollator…
It’s clear that Social Care have passed the book onto OT and think that’s sufficient. It’s not. I am burnt out, overwhelmed, and dysregulating when not being listened to.
Where’s the support services??
Trying to remain independent with zero carers, support from friends & family is great but where are the support services?? Just how bad do things have to get before anyone notices?
#RareDiseases #Autoinflammatory #MKD #Autistic