Robert Joyce - A 30 Minute Life

Patient Advocate, Patient Representative, #MultipleSclerosis #chronicpain #blogger #researchassistant #MS #a30minutelife #PPI

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

Do we really want to include all #patients in #health #research? #Ireland blocks truly #inclusive #involvement of #disabled and #sick.
@AnneRabbitte @DisabilityFed @IPPOSI @PPI_Ignite_Net @HSEResearch @hrbireland @HRB_NCTO @maria16byrne #PPI
https://t.co/YABhuVXtgj

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

It’s been a long time since I have posted here, and I want to share a significant change in the rules of #InvalidityPension in #Ireland. Now we can get permission to be involved in Patient & Public Involvement (PPI) without out losing our pension. We just inform them.

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

It was great to speak on this podcast about my experiences as a patient researcher

Embedding Patient Perspectives into Clinical Research┃Robert Joyce https://t.co/Fx28NW4Vsj

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

@MrBeast I wonder if this is real, or just another scam ad.

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

A fantastic idea.

[theMSguide.com 🧠 @themsguide]

In addition to the Exoband that has meant I can lose my cane a lot of the time I am trying the Exoankle. It helps lift your foot so I barely scuff my foot at all and I don’t swing my leg as much out to avoid scuffing it. @MoveoWalks

Very clever.

[Huntington's Disease Association of Ireland @HDAI_ie]

Magdalen Rogers, @naiireland speaks of the vital need for neurology nurses. Posts already funded are not in post due to HSE moratorium @roinnslainte @HSELive #patientsdeservebetter

[The Struggle Is Wheel @struggleiswheel]

Don't forget tonight 7:30p🎧📻 @RTEOne radio we highlight how ♿accessibility is still an afterthought with new tourism projects in Ireland using the example of The Emigrant Park in New Ross which cost €1million & won an urban planning award. #LastOneOnTheTrain #Ableism

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

@cathmartingreen Can the minister explain why artists, who can work, will get a basic income, and people living with chronic illness/#disability are denied a living wage. @DisabilityFed @MSIRELAND @AnneRabbitte

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

@HyundaiCarsIrl is there an issue with Bluelink?

[Paul @griffax09]

To my followers in the US who live with Relapsing Remitting #MultipleSclerosis, please check out this gig with @savvy_coop. Click on the link to learn more. https://t.co/wfFrkvOGyD

[DFI @DisabilityFed]

The long-awaited Disability Action Plan, the Government’s response to years of underfunding of the disability sector, will be published today. The launch will be live streamed from 1pm at this link https://t.co/9DDQHFmRSm #DisabilityActionPlan

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

I was a collaborator in this paper, trying to set a strategic neurological research agenda for Europe.
@EANeurology @PPI_Ignite_Net @MSIRELAND @themsguide @PPI_Galway @NUIGMedicine @IPPOSI @eupatients @eupatientsforum @PFMDwithPatient
https://t.co/9i6eSDbdO3

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

In today’s @irishexaminer there is an article about medicinal #cannabis. I was interviewed for this article. @themsguide @MSIRELAND @mssocietyNI @HSEResearch @shiftms @mssocietyuk

#multiplesclerosis #spacticity #pain

https://t.co/CCwqjOkPla

[Rachel Gibson Cooper @RachelFalling]

If you have MS, live in the UK, and would be interested in taking part in some research interviews about your journey from diagnosis to managing your condition (with vouchers as a thank you for your time), send me a DM and I’ll tell you how to get involved.

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

@eupatientsforum @eupatients @PPI_Ignite_Net @GlobalPPINet @PPI_Galway @IPPOSI @PFPS_Ireland @MSIRELAND @naiireland @ParkinsonsIre @epilepsyireland @CroiHeartStroke @Galway_Research @sineadnieidhin

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

⁦The #patient should be at the heart of #research. @pswieboda⁩ has launched his podcast about #brain #research and #policy and I am honored to be his first guest. We discuss the benefits of #PPI and the #obstacles faced by us. ⁦ https://t.co/aEGifuKPxO

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

If @DonnellyStephen wants to give patients, like me, a voice, why is he blocking our comments. The value of comments is you will get positive and negative viewpoints. All are valuable in developing a #patient centred system which is safe for all.

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

@CattersonChron @HeatherRussellk Where can we see is @HeatherRussellk

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

@mapflynn @HSELive @NationalQPS @NurMidONMSD A key element of this should be that all patients who use the health service should be included. However, those on Invalidity Pension cannot without risking losing their support. Those in receipt of Carers Allowance similarly take a risk. This must change!!

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

@NationalQPS @CcoHse A key element of this should be that all patients who use the health service should be included. However, those on Invalidity Pension cannot without risking losing their support. Those in receipt of Carers Allowance similarly take a risk. This must change!!

[Robert Joyce - A 30 Minute Life @A30MinuteLife]

@roinnslainte @npsoIRL @WHO_Europe @NationalQPS @ISQua @patient_for @nalaireland A key element of this should be that all patients who use the health service should be included. However, those on Invalidity Pension cannot without risking losing their support. Those in receipt of Carers Allowance similarly take a risk. This must change!!