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Patients Association

@patients-association.org.uk
1.5K followers 420 following 742 posts

We are an independent charity campaigning for patient partnership. For our social media community guidelines, see: bit.ly/3X9Hd83

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Patients Association @patients-association.org.uk · 22h
Yesterday our Head of Partnerships and Involvement @sarahtilsed.bsky.social shared at this session at the Conservative Party Conference about putting patient experience at the heart of delivering the National Cancer Plan
Sarah Tilsed speaking on a panel at the Conservative Party Conference
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Patients Association @patients-association.org.uk · 29/09/2026
Download the translated guides: buff.ly/GuqJPym We also translated our animation voiceover into Punjabi: buff.ly/IEBeDmx
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https://buff.ly/IEBeDmx
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Patients Association @patients-association.org.uk · 29/09/2026
Know your rights as a patient and understand what help you can get in our guide - now translated into Arabic, Bengali, Portuguese, Romanian and Urdu! Thank you to Novartis UK for funding the translation of this work.
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Patients Association @patients-association.org.uk · 28/09/2026
And this afternoon Rachel spoke about the National Cancer Plan and the vital importance of designing services with patients, and in a way that specifically targets delays and unfairness in waiting times. If you see her, do say hi, we'd love to speak with you! 👋
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Patients Association @patients-association.org.uk · 28/09/2026
Our Chief Executive @rachel-p.bsky.social is at Labour Party conference this week and today was speaking on two panels. The first was with RCGP and @rcphysicians.bsky.social about neighbourhood health and what it will take to get it right for patients. #LAB26
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Patients Association @patients-association.org.uk · 28/09/2026
Thank you for sharing!
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Patients Association @patients-association.org.uk · 28/09/2026
At this free webinar, you'll hear about patients' experiences of accessing bladder and bowel products and services, including some of the challenges people face in getting care that meets their individual needs. Sign up: buff.ly/BijgGjK
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Patients Association @patients-association.org.uk · 25/09/2026
Too often, neurodivergent south Asian women are dismissed or misunderstood in healthcare. Patient advocate Mala shares why inclusion, empathy, and small changes can transform trust and outcomes. 👉 Read her blog: buff.ly/4F0sx8a #ESEA Heritage Month
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Unseen and unheard: why healthcare must listen to neurodivergent south Asian women
Patient advocate Mala shares how bias and misunderstanding shape healthcare for neurodivergent South Asian women, and why empathy, inclusion, and small adjustments can transform patient trust and…
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Patients Association @patients-association.org.uk · 24/09/2026
👋 Our free membership brings you to the heart of our campaign for improvements in health and social care. Sign up today: buff.ly/2kFknqW
Join our free membership!
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Patients Association @patients-association.org.uk · 23/09/2026
Patient consent is much more than signing a form and saying yes. Join our free webinar, in partnership with Radar Healthcare, to explore what meaningful consent looks like in practice on 21 October, at 4pm Book now: buff.ly/z6CrLUv
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Patients Association @patients-association.org.uk · 21/09/2026
Our Chief Exec @rachel-p.bsky.social is speaking at a @libdems.org.uk conference fringe event on ambitions for the National Cancer Plan. Cancer services must be designed around patients and tackle delays. Good intentions in a plan don’t help someone waiting a year for a referral. #LDConf #HCF26
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Patients Association @patients-association.org.uk · 18/09/2026
Behind these figures are real women who were told mastectomies could have been avoided. Our thoughts are with everyone affected. Patients deserve full transparency from County Durham and Darlington NHS Foundation Trust, and to be genuinely involved in the review process www.bbc.co.uk/news/article...
bbc.co.uk
Twenty women had breasts removed unnecessarily, NHS trust admits
The women were among hundreds who were harmed by their treatment at County Durham health trust.
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Patients Association @patients-association.org.uk · 15/09/2026
Our webinar on NHS #ContinuingHealthcare is underway! Not able to attend? Don't worry, the recording will be uploaded to our website later this week. www.patients-association.org.uk/Event/an-int...
patients-association.org.uk
An introduction to Continuing Healthcare - 15/09/2026 11:00:00
Are you struggling to fund specialist care? Find out whether NHS Continuing Healthcare could be the answer.
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Patients Association @patients-association.org.uk · 14/09/2026
Our free webinar about NHS #ContinuingHealthcare is happening tomorrow, but don't worry there's still time to book your place! Sign up here: buff.ly/WelzLgx
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Reposted by Patients Association
Chartered Society of Physiotherapy @thecsp.bsky.social · 14/09/2026
'Today marks the start of Rehab Awareness Week and our message is simple: Rehab Can't Wait.' Sara Hazzard CSP introduces this year's #RehabAwarenessWeek activities - help us spread the message that Rehab Can't Wait. #RightToRehab
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Patients Association @patients-association.org.uk · 12/09/2026
We're incredibly grateful to everyone who has decided to give a one-off donation or updated their Will to include a gift to our organisation. Thank you!
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Patients Association @patients-association.org.uk · 12/09/2026
Remember A Charity Week is drawing to a close but you can always find information on how to leave a gift in your legacy to enable our work by visiting this webpage: buff.ly/jqIzaIR
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How to leave a legacy to the Patients Association
Leaving a gift to the Patients Association in your Will could help many people after you are gone.
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Patients Association @patients-association.org.uk · 12/09/2026
In her latest blog, Chief Executive @rachel-p.bsky.social reflects on the huge impact legacy donations have on our work by bringing us closer to the future we want to see; one where patients aren’t simply heard but genuinely help shape the care they receive. Read her blog: buff.ly/ILsKQd1
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Patients Association @patients-association.org.uk · 11/09/2026
“AI has the potential to improve healthcare, but patients need to be confident that it is being developed and used safely, fairly and transparently, and without reinforcing the inequalities that already exist in healthcare." @rachel-p.bsky.social
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Patients Association @patients-association.org.uk · 11/09/2026
We stand with the @nhs-rho.bsky.social in calling for addressing inequity, and involving racially minoritised communities as equal partners in decision-making, to be foundational to the development of AI in healthcare. buff.ly/ih7QE2g
nhsrho.org
Observatory urges race equity to be central to the future of AI in NHS care
Artificial intelligence (AI) used across NHS healthcare must embed racial equity to ensure full participation and build further trust with diverse communities and patients. The call comes from a new…
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Patients Association @patients-association.org.uk · 10/09/2026
There's a week to go until our free webinar on NHS Continuing Healthcare. Book your place and share with someone who you think might be interested in learning more about this service. Book now: buff.ly/HOys4Y4 This webinar is being delivered in partnership with Compass Continuing Healthcare.
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Patients Association @patients-association.org.uk · 07/09/2026
What would you want to leave behind for future patients? For Janet, it’s a future where patients are listened to, understood and involved in decisions about their care. After her husband’s prostate cancer was diagnosed late, she knows how important that can be 🩵 Read Janet’s story: buff.ly/UJELkAZ
“I've known the valuable work of the Association for many years and how important it is to make sure patient views get listened to and acted upon.”
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Patients Association @patients-association.org.uk · 07/09/2026
At this free webinar, you'll hear about patients' experiences of accessing bladder and bowel products and services, including some of the challenges people face in getting care that meets their individual needs. Sign up: buff.ly/BijgGjK
patients-association.org.uk
Making decisions together: Supporting conversations about bladder and bowel products and services - 14/10/2026 10:00:00
Join us to learn about resources empowering patients to access bladder and bowel care tailored to their needs, beyond cost-based NHS decisions.
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Patients Association @patients-association.org.uk · 02/09/2026
Remember A Charity Week kicks off in just one week’s time! One gift in a Will enables us to bring the patient voice to the heart of health and care policy decision-making. #RememberACharity
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Patients Association @patients-association.org.uk · 29/08/2026
Confused about NHS Continuing Healthcare? Join our online session with Compass CHC to find out about NHS Continuing Healthcare. We'll cover eligibility, the assessment process, how to prepare and common myths, and submit your questions to our panel. Book your place: buff.ly/HOys4Y4
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Patients Association @patients-association.org.uk · 27/08/2026
There’s just two weeks to go until #RememberACharity Week. A gift in your Will can give patients a voice for the future, find out more here: buff.ly/7Z5nY9r
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Patients Association @patients-association.org.uk · 27/08/2026
Are you getting the bladder and bowel care that’s right for you? Join our free webinar to hear patients’ experiences of accessing products and services, explore the importance of shared decision-making and find out how new resources can help you understand your rights. Book now: buff.ly/kWp0zBa
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Patients Association @patients-association.org.uk · 25/08/2026
Many people who could be eligible for NHS Continuing Healthcare don't apply because of misinformation, lack of awareness or concerns about the assessment process. Join our webinar with Compass CHC to find out what you need to know: buff.ly/HOys4Y4
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Patient Safety Learning @patientsafetylearning.org · 24/08/2026
🆕Although maternal sepsis is a leading cause of maternal death worldwide, many people have never heard of it. Amy Breslin, Maternity Consultant at the UK Sepsis Trust explains what it is and how we can improve outcomes. www.pslhub.org/learn/patien... #sepsis #patientsafety #maternitysafety
pslhub.org
We need to talk about maternal sepsis (by Amy Breslin)
Amy Breslin is a Manchester-based midwife and Maternity Consultant for the UK Sepsis Trust. In this interview, she explains what maternal sepsis is, the huge impact it has both globally and for the in...
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Patients Association @patients-association.org.uk · 24/08/2026
Patients tell us they can't afford private treatment but feel like there is no other option. For more information on dental services, take a look at our website: www.patients-association.org.uk/you-and-your...
patients-association.org.uk
You and your dentist
This page is designed to give you more information about finding a dentist and using their services. It includes tips on how to prepare for an appointment, the charges you can expect and how to make a...
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Patients Association @patients-association.org.uk · 24/08/2026
Lack of access to NHS dentistry is consistently one of the most common enquiries we receive through our helpline One patient told us of their teeth breaking, struggling to eat and drink, and damage to their mental health because they couldn't access an NHS dentist
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Patients Association @patients-association.org.uk · 18/08/2026
"We support @hssib.bsky.social's call for a rapid, patient-safety-focused evaluation before Advice and Guidance is expanded any further."
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Patients Association @patients-association.org.uk · 18/08/2026
"Patients told us in 2022, and have now told @hssib.bsky.social, that they feel lost, passed between primary and secondary care with no idea what is happening to their case. No one should have to fight to be seen or chase their own doctor to find out if they've been forgotten" @rachel-p.bsky.social
patients-association.org.uk
The Patients Association responds to HSSIB's investigation into Advice and Guidance
We support HSSIB's call for a rapid, patient-safety-focused evaluation before Advice and Guidance is expanded any further.
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Patients Association @patients-association.org.uk · 24/07/2026
🎧Short on time? Listen to the podcast on our Spotify: open.spotify.com/episode/0Zbw...
open.spotify.com
Understanding the causes of health inequalities and the role of trust in improving outcomes with Prof Habib Naqvi
The Patients Association Podcast · Episode
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Patients Association @patients-association.org.uk · 24/07/2026
Earlier this month, we wrapped up our fourth annual #PPW. Over the next few weeks, we'll be sharing podcast recordings of the sessions, alongside short blog summaries. The first of these, covering our session with Prof Habib Naqvi, is available on our website now👇
patients-association.org.uk
Trust is the algorithm - discussing health inequalities with Professor Habib Naqvi MBE FFPH
Reflections from the Patients Association Patient Partnership Week 2026 webinar on understanding the causes of health inequalities and the role of trust in improving outcomes.
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Patients Association @patients-association.org.uk · 23/07/2026
We're working with @pickereurope.bsky.social and Cora Health on updating Cora's communications framework. If you are living with an #MSK condition, or have used a community MSK service in the past 1-2 years, express your interest below buff.ly/AE8jJeR
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Patients Association @patients-association.org.uk · 22/07/2026
Understanding new technology in healthcare should be clear and accessible. A new video from @healthinnovkss.bsky.social for patients explains ambient voice technology (AVT), how it may support appointments and how it keeps clinicians at the centre of care. 👉 buff.ly/dOiDIhs
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Helping patients understand ambient voice technology: a new video to support digital inclusion - Health Innovation Kent Surrey Sussex
A new patient video explains ambient voice technology (AVT) in a clear and reassuring way. It helps people understand how AVT may be used in appointments, why it can be helpful and how it supports the...
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Patients Association @patients-association.org.uk · 14/07/2026
We welcome the recognition of patient experience as a core pillar of high quality care. Now we need to see the ambition for patients to have real power, not just voice, put into practice. Read our joint statement with @pickereurope.bsky.social on the new quality strategy: buff.ly/lXGRh5P
"We agree that delivering high quality care is a shared responsibility across the NHS and support the renewed focus on tackling structural inequalities and unwarranted variation within the health service. Strengthening how patient experience is measured and improved is essential – only by focusing on what matters most to patients, service users and their families and carers can care become truly person centred.
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Patients Association @patients-association.org.uk · 06/07/2026
NASP and the Patients Association are surveying anyone who has ever had support from a Social Prescribing Link Worker, so NASP can ensure its strategy supports the provision of the best and most appropriate #socialprescribing services for all. Complete the survey now!
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Patients Association @patients-association.org.uk · 06/07/2026
We are still looking for people to take part in work around home enteral feeding. Please do share or sign up!
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Patients Association @patients-association.org.uk · 03/07/2026
"If I was giving advice to healthcare organisations...it's just a gentle reminder to say that communication isn't one sized fits all. Every interaction should always begin with 'what matters to you? How can I communicate with you in a way that works best'" Shahnaz Aziz, @healthinnovation-em.org.uk
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Patients Association @patients-association.org.uk · 03/07/2026
"You want to make sure you're more culturally understanding...A lot of people say to us that their concerns are just ignored. When you've got a gut feeling that something is wrong, you want that to be validated at the very least." Saliha Ahmed
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Patients Association @patients-association.org.uk · 03/07/2026
"I think we need to at digital as a way of enhancing care that humans deliver. So it should be to enhance and not to replace existing services. Patients should be able to choose a channel that best fits their needs" Shahnaz Aziz, @healthinnovation-em.org.uk
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Patients Association @patients-association.org.uk · 03/07/2026
"I don't think the issue is that the healthcare professional doesn't care. I think the system is under pressure and communication is often designed around process rather than around patient. Giving information is not the same as making sure it is understood" Dorina Poenaru, patient
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Patients Association @patients-association.org.uk · 03/07/2026
We asked attendees 'How well does the NHS communicate with you about your care?' 51% said 'inconsistently, it varies a lot' 36% said 'mostly well, with occasional gaps'
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Patients Association @patients-association.org.uk · 03/07/2026
"People who have one or more long-term conditions, people who are struggling financially, people from global majority backgrounds, and carers are more likely to experience NHS admin issues. Poor admin is exacerbating health inequalities." Katie Purbrick-Thompson @thekingsfund.bsky.social
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Patients Association @patients-association.org.uk · 03/07/2026
"Communication should not just be delivered to the patient. It should be designed with the patient. By listening to diverse communities and understand the different needs, we can create healthcare that is more accessible, more inclusive, and more compassionate for everyone" Dorina Poenaru, patient
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Patients Association @patients-association.org.uk · 03/07/2026
We can't quite believe it, but we've just started the final webinar of Patient Partnership Week 2026! Our fantastic panel will explore how the NHS can improve the way it communicates with patients. Details here: www.patients-association.org.uk/Event/equity... #PPW2026
patients-association.org.uk
Equity in access: tackling barriers to treatment and care - 03/07/2026 10:00:00
This webinar will explore the inequities that shape patients’ access to treatment and care, and why many people still face barriers to receiving timely, effective support.
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Patients Association @patients-association.org.uk · 03/07/2026
"Information alone is not enough. Patients and their families need information delivered in a way they can really understand and at a time when they're able to process it" Kirstin Spencer, patient
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Patients Association @patients-association.org.uk · 03/07/2026
"One of the biggest barriers that often gets overlooked is patient understanding. We tend to focus on whether a treatment exists or whether it's been approved, but not so much on whether people actually understand what's happening to them or what options are available" Kirstin Spencer, patient
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