Mel Brooke

New post just dropped reflecting on why pre-award PPI is expected everywhere yet still so hard to do meaningfully!
#PPI #LivedExperience #ResearchInvolvement #PatientPartners #PreAwardPPI #CoProduction #HealthResearch #PRPNetTT

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

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!

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...

Looking forward to the 10th Brit-PACT annual hybrid conference on Friday! Interested researchers, HCPS and patients can register via the email at info@britpact.org 🖐️
#psoriaticdisease #rheumatology #patientpartners

Emoji challenge: Buddy Check (no words needed - emojis only!)

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

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

#patientresearchpartners #PPIE

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...

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

▶️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

🔍 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

🎉 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

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.

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? ⬇️

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

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

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

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...

Labour's new PIP assessment format.

‘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

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

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.

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

#cityofbath #PPIE #dermatology #psoriasis #research

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

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

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

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...

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

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

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

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

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

Winter flare up, extra fatigue, brain fog. Joy (not) #psoriaticarthritis reality.

iProlepsis | Solution for psoriatic arthritis The iPROLEPSIS project is where psoriatic arthritis inflammation is explained through multi-source data analysis guiding a novel personalized digital care ecosystem.

Hello, everyone! 👏

iPROLEPSIS is a Horizon Europe-funded project developing a personalised digital care ecosystem for people with #Psoriatic #arthritis (PsA). By using Real World Data and explainable AI, we aim to improve early detection and personalised care.

Learn more: www.iprolepsis.eu

🔬 British Society for Rheumatology Psoriatic Arthritis (PsA) Register Update! 🔬

📢 Funding extended until Sept 2027—ensuring long-term research on PsA impact & treatment effectiveness

📢 Shorter patient questionnaire—streamlined for better experience

More info 👉 tinyurl.com/27wympte

📢 The January edition of the ARMA Newsletter is here with the latest #MSK news, member updates, and more. Don’t miss out — subscribe now to stay up to date! 📰

arma.uk.net/nljan25