Author | Lightnews

Mel Brooke @psahq.bsky.social · 1d

Psoriatic disease isn’t “just skin.” It’s systemic — affecting heart, mind, and more. This #WorldPsoriasisDay let’s push for joined-up care and compassion across every “ology.” New blog on my substack - 🔗Link in bio

#Psoriasisawareness #PsoriaticArthritis #ChronicIllness #InvisibleIllness

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Mel Brooke @psahq.bsky.social · 14d

Well this one is getting conversation going 🤨 Have you experienced a barrier to conference attendance as a patient research partner? (click the image to read and comment) 👇🏻

open.substack.com/pub/prpnettt...

Open the Doors: Why Excluding PRPs from Conferences Is a Missed Opportunity

If Patient Research Partners are shut out of conferences, everyone loses. Some organisations are already showing what real inclusion can look like and the difference it makes. Its all about the comms!

open.substack.com

Mel Brooke @psahq.bsky.social · 22d

Looking forward to the 10th Brit-PACT annual hybrid conference on Friday! Interested researchers, HCPS and patients can register via the email at [email protected] 🖐️
#psoriaticdisease #rheumatology #patientpartners

Mel Brooke @psahq.bsky.social · Sep 12

A little bit of Friday fun with PRPNEtTT - pop over to substack and join the convo 👍

open.substack.com/pub/prpnettt...

#patientresearchpartners #PPIE

Emoji challenge: Buddy Check

(no words needed - emojis only!)

open.substack.com

Mel Brooke @psahq.bsky.social · Aug 19

We’ve got lived experience, research insight, and lots of ideas. What we need is a place to share them. That’s what PRPNetTT is for - join us on prpnettt.substack.com/p/welcome-to...

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Mel Brooke @psahq.bsky.social · Aug 8

I just revisited an old fav topic of discussion in our peer group in my latest blog I’m sharing the fresh insights, practical tips, and a free flare-up diary download to help you keep track🖐🏻
psazzgroup.wixsite.com/psa-hq/blog

#InflammatoryArthritis #FlareUps #ArthritisAwareness #invisibleillness

Reposted by Mel Brooke

UWE Health Research @chcr-uwe.bsky.social · Aug 7

▶️PRPNetTT is a new, peer-led UK network & think tank for people involved in patient partnership across rheumatology research & service improvement.

▶️It's a space for collaborative peer support & open discussion between #PatientResearchPartners, #PRPs

▶️ prpnettt.substack.com
@psahq.bsky.social

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Mel Brooke @psahq.bsky.social · Jul 9

🔍 What do PRPs really get out of being involved in research?
Quite a lot (but not always everything they need) Lets talk about the gaps!

🔗New blog post link in bio🖐🏻

#PPI #PatientInvolvement #PRPs #RheumatologyResearch #PatientVoices #PatientExperience #HealthResearch #CoProduction #HealthEquity

Mel Brooke @psahq.bsky.social · Jun 5

🎉 Something exciting is on the horizon for Patient Research Partners in rheumatology! A new national, peer-led initiative.
This isn’t another top-down group. We’re experienced. We’re collaborative.

Stay tuned – expressions of interest open soon🖐🏻

#PRPNetTT #rheumatology #patientresearchpartners

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Reposted by Mel Brooke

Just Treatment @justtreatment.org · Jun 3

In response to a Parliamentary question from Martin Wrigley MP, the government admitted they have NOT done any impact assessment of how changes to #PIP will affect people living with mental illness.

Why are the government ignoring the people their policies will harm? ⬇️

Stephen Timms Has No Answer for How PIP Changes Will Impact People with Mental Illness — So I Wrote Him One — Just Treatment

Just Treatment’s Senior Organiser May writes to the Chair of the Work and Pensions Select Committee about why the government’s approach to mental illness and welfare is failing people.

justtreatment.org

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Mel Brooke @psahq.bsky.social · Apr 30

Time for another PsA HQ blog and this one reflects the importance of payment while acknowledging that there could be other meaningful forms of recognition for involvement. I’d love to know what you think? 🖐🏻

#patientinvolvement #patientvoice #researchanddevelopment #patientinsights #rheumatology

Mel Brooke @psahq.bsky.social · Apr 29

Hi Rheum friends - sorry I can't bring you the #patientvoice from #BSR25 this year. There has been registration complications so I do not have remote access as in previous years. It's a real shame because our insights and voice matter too🖐️ #rheumatology #researchpartners

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Reposted by Mel Brooke

Martin Paul Eve @eve.gd · Apr 17

Very worrying. It took me *six* GP visits before they recognised I had an inflammatory arthritis and referred me to the necessary hospital. Many other rheumatoid arthritis patients report similar difficulties. Now there's a perverse incentive not to refer.

www.theguardian.com/society/2025...

GPs in England will be able to claim £20 for every time patient is not sent to hospital

Surgeries will be able to claim money if doctors refer patients to an out-of-hospital setting in bid to cut waiting lists

www.theguardian.com

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Reposted by Mel Brooke

Joshua WY @noshayminthat.bsky.social · Mar 22

Labour's new PIP assessment format.

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Reposted by Mel Brooke

HT4Ecosocialism @ht4ecosocialism.bsky.social · Mar 24

Because Pip is a “gateway”, any disabled person who loses the benefit will not only lose that income but other entitlements too, such as free prescriptions and council tax deductions. Most starkly, removing someone’s Pip will mean their unpaid carer losing carer’s allowance

‘I can’t sleep, I’m so scared’: disabled people face benefit cuts domino effect

Three people tell how knock-on impact of losing Pip on carer’s allowance and other benefits will affect their families

www.theguardian.com

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Reposted by Mel Brooke

Peter Harrison @4harrisons.bsky.social · Mar 23

Rachel Reeves on #BBCLauraK "if that person can't work he will continue to receive PIP".

PIP is not an out-of-work benefit! These people don't even understand the things that they're cutting.

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Mel Brooke @psahq.bsky.social · Mar 25

Sharing this #psoriasis patient involvement call from a Dermatology registrar, RUH Bath 🖐🏻

#cityofbath #PPIE #dermatology #psoriasis #research

Reposted by Mel Brooke

James Taylor @jamestaylor2.bsky.social · Mar 18

The biggest cuts to disability benefits on record should shame the government to its core. They are choosing to penalise some of the poorest people in our society. Almost half of families in poverty include someone who is disabled.

#DisabilityBenefits

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Mel Brooke @psahq.bsky.social · Mar 12

Great time earlier today talking to my latest fantastic PsA HQ podcast guest Jana J (episode will be coming soon!)

Could you be my next guest? Let’s talk - ping me a message here or check the links in my bio for other ways to get in touch 🖐🏻

#rheumatology #research #podcastshow #patientvoice

Reposted by Mel Brooke

Sue Brown @suebrownsb.bsky.social · Mar 7

My news this week is that I'm planning to leave ARMA after 8 years. Which means there is now a brilliant opportunity for the right person to lead a small charity delivering impact where it matters for people with MSK conditions.
Details www.charityjob.co.uk/jobs/arthrit...

Chief Executive Officer | Arthritis and Musculoskeletal Alliance | CharityJob

Apply now for Chief Executive Officer. , £52,000 - £55,000 (Equivalent to £68,750 full time), find a career with meaning today

www.charityjob.co.uk

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Reposted by Mel Brooke

Arthritis Action @arthritisaction.org.uk · Mar 10

MSK conditions are a leading cause of disability and absence from work - ARMA’s latest report reveals that 1 in 3 ICBs have no meaningful reference to it in their plans. A strategic, system-wide approach is needed! Read the report & recommendations: arma.uk.net/icb/

@suebrownsb.bsky.social

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Mel Brooke @psahq.bsky.social · Mar 9

Suns out, it’s garden time but I’m struggling with what I can actually do. Even the gloves won’t go on. I don’t want to be defeated. The point of telling you this is awareness of everyday choices that arthritis steals from people 🪴🖐🏻
#arthritisawareness #livingwithchronicillness #psoriaticdisease

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Mel Brooke @psahq.bsky.social · Mar 7

The answer to yesterday’s quiz was ‘A’ (there were more women than men responders to the Patient Research Partner survey!) I have popped some ponderings on this imbalance on a new blog page over on the PsA HQ website. The link in bio- please check it out🖐🏻 #patientresearchpartners
#gendergap

Mel Brooke @psahq.bsky.social · Mar 6

Some mid-week fun and a peek into the early UK PRP survey results. Can you guess the answer? Comment below ….. (the actual answer will be added later) 👇🏻

#patientresearchpartners #researchresults #rheumatology #patientexperience #patientinvolvement #ppie #arthritisawareness #patientvoice

Mel Brooke @psahq.bsky.social · Feb 21

Tune in to listen along to a new PsA HQ podcast episode as I catch up with PRP friend & psoriatic disease advocate Russ Cowper🖐🏻
🎧Links in bio🔗🤘🏻
#researchpodcast #patientinvolvement #livedexperience #rheumatology #psoriaticarthritis