By PhD Student Jess McCann
For our October EDI event we welcomed Steve Storey, lead clinical pharmacist at Cumbria, Northumberland, Tyne & Wear (CNTW) NHS Trust, to come and speak to us about how we can make ‘Reasonable Adjustments to create Inclusive Consultations for Patients’.
Reasonable adjustments are described as small, sensible changes made so that people who face barriers to accessing and receiving care, due to a disability, mental health condition or other additional needs, are given equal opportunities.
He explained that we accept reasonable adjustments (like physical ramps, interpreters and assistive technology) in many areas of day-to-day life, so why should healthcare consultations be any different? Within healthcare settings, failing to make such adjustments could worsen existing inequities. For instance, people with un‐met communication, sensory or cognitive needs may experience worse outcomes, including higher mortality, simply because the system assumed a “one size fits all” approach.
In Steve’s session, he spoke of examples of what counts as “reasonable” vs. “unreasonable” adjustments. Sometimes, it isn’t about removing all risk or achieving perfect equality in consultation duration and structure, but about taking practicable, proportionate and effective steps to address disadvantages for that person, at that time. He then moved into an interactive exercise with the audience to experience some of the disadvantages people may face. He asked us to solve a complex mental‐math calculation within 30 seconds; then to try reading some text in a different language; then to try reading very small, blurry text. These simple activities illustrated how patients with cognitive impairment, language barriers, sensory loss or low health literacy are at a disadvantage when seeking, accessing or receiving health care. It was eye-opening to experience the frustration, the delay and confusion that patients are subject to.
Steve discussed several barriers for patients accessing care, such as language and language style, communication that isn’t just about language (e.g., neurodiversity, sensory needs, memory, processing speed), physical disability, diagnostic overshadowing and hypersensitivity (e.g., to sensory stimuli, environments, noise, smells). These may mean that reasonable adjustments to consultations are used; for example, longer appointment times, quieter environments, visual prompts, alternative formats, consultation breaks or bringing a support person to accompany.
Steve shared with us some very impactful real-life examples of people he has provided care for who have required reasonable adjustments, and demonstrated what it means to go the extra mile in delivering person-centred care.
He summarised that reasonable adjustments are not something necessarily taught within university or professional training but are central within professional capability. Being aware of additional needs, asking patients what they would prefer and anticipating barriers and how to act on them allows us to demonstrate humility and advocate for the best possible outcomes for our patients.
It was a very stimulating and thought-provoking session, and it was great to see a big audience of attendees, spanning undergraduate Pharmacy students, postgraduate students, members of the NIHR Newcastle PSRC, wider University network and clinical colleagues from Newcastle upon Tyne Hospital NHS Foundation Trust. The talk provided valuable insights that we can apply not only in our current roles but also take with us throughout our future careers. Engaging with reasonable adjustments in consultation settings may allow us to be better equipped to promote person-centred care to diverse, underrepresented patient groups.
Thank you, Steve!
By Kamil, NIHR Newcastle PSRC Patient, Public Contributor
Lured by the promise of good food and new acquaintances, on Friday 17 October I made my way to Manchester for the NIHR SafetyNet Symposium – a gathering of clinicians, researchers and public contributors united by a single mission: tackling inequities in patient safety. Hosted by the Greater Manchester Patient Safety Research Collaboration (PSRC), the event brought together colleagues from the six PSRCs across England – Central London, Greater Manchester, Midlands, Newcastle, North West London and Yorkshire & Humber.
The day began with coffee and a bustling lobby filled with poster presentations. From the start, it was clear this wasn’t just an academic exercise. It was a collective effort to bridge the gap between policy, practice and lived experience.
One of the first things that struck me was the keynote by Dr Rosie Benneyworth from the Health Services Safety Investigations Body (HSSIB). I hadn’t heard of HSSIB before and I found its mission fascinating. The organisation investigates systemic issues in healthcare topics such as sepsis, prison health and fatigue without focusing on blame. Instead, it looks for learning and improvement. This shift from a ‘who’s to blame’ culture to one of collective accountability resonated deeply with me.
A presentation on avoidable healthcare-associated harm in prisons was another eye-opener. While I wasn’t surprised to hear that prisoners and people experiencing homelessness suffer significantly worse health outcomes, it was sobering to see how these inequities manifest in daily practice e.g. medication shortages, missed appointments and institutional barriers that make basic care difficult. As someone finishing reading a book on health promotion, I could connect the dots between theory and reality: these are not abstract inequalities, they are lived injustices.
One reflection that stayed with me came from a discussion about adoption and breaking cycles of poverty and violence. Even in systems that often feel broken, there are ways to create safety and opportunity through compassion and action.
Several sessions focused on the intersection of communication and safety, including translation and interpreting services. This hit particularly close to home. As a qualified Polish interpreter, I know how vital accurate translation is for patient safety, yet the pay rates offered by NHS providers are often so low that professionals can’t afford to take the work. Hearing that language access was being discussed as a safety issue, not just a convenience, was both encouraging and frustrating. We have the knowledge; now the system needs the will to act.
The Patient Safety Healthcare Inequalities Reduction Framework, presented by Dr Hester Wain, outlined five principles for change: communication and information, training and resources, data, co-production, and research. I was especially struck by her emphasis that the experiences informing the framework are what make it powerful.
By the end of the day, after many conversations in the poster corridor and a moving talk on ethnic inequities in patient safety by Professor Dawn Edge, I left Manchester feeling both hopeful and challenged. The message was clear: health doesn’t happen in a vacuum. Tackling inequity requires empathy, collaboration, and, above all, a commitment to listen to those whose voices are too often ignored. For me, as a patient-cum-public contributor, the symposium was a reminder that my lived experience isn’t just welcome in research – it’s essential.
By Henry Song, Artificial intelligence and data science in multiple long-term conditions theme PhD student
Attending the NIHR Newcastle PSRC/Pharmacy event on the 19th of June was a very positive experience for me. Although I was not able to present my latest research findings due to recent changes in my project dataset, the day still proved to be highly valuable.
I had the chance to see a wide range of presentations from fellow students and colleagues. Some of the work provided direct inspiration for my own research, while others helped to broaden my perspective on the diverse approaches within our field. I was particularly struck by the experimental-based studies on display, which were not only highly innovative but also showed real potential for future impact.
In the afternoon, the workshop on research funding applications was especially useful. It gave me a first insight into the key steps, structure, and approaches involved in applying for research grants. This will no doubt be very important as I continue to develop my academic career.
Overall, the event was an excellent opportunity to learn, connect, and reflect on both my own project and the wider research landscape.
Co-authors: Domna Salonen, NIHR Newcastle PSRC PhD student Haley, Joanne and Carol from the co-development group
Patient safety research considers various matters of life, death and health. These are not any academic topics. For many people, these are experiences they have lived through and are living with.
Before I started my research training, I became a practitioner. Mental health occupational therapy taught me a lot about healthcare and relationships. I learned that it is wise to listen to patients. Two different people can have the same condition, but completely different experiences. I also learned that it is caring to have difficult conversations. At its best, healthcare is about moments when a person in pain gets to talk with someone who is wise and caring. Both the patient and the practitioner use their voice, both listen, both learn.
Now I am learning to research. I have clear boundaries between how I engage with people as a researcher and as a therapist. There are great differences in how to build and navigate relationships in each role. As different as it is to show up as a researcher and as a practitioner, there are some similarities. At its best, also research is about people having good conversations. Researchers and people with personal experience get together to speak, listen and learn.
In my doctoral research, I work with a group of people who I have met through my previous projects. Different group members have personal experiences to share. Some know how it feels to live with addiction, and how it is to recover. Some have been family carers for someone with mental health problems. The common ground is that we all have a strong idea on what mental health support is at its best and at its worst.
We all bring with us our own reasons and motivations to do our bit in research:
Joanne: I want to improve things for others. I want to make positive, long-lasting change easier for everyone: professionals, policymakers, patients, families.
Haley: I want people’s voices to be heard by those who make big decisions at the higher levels. Research is a vital help.
Domna: I research because I want to understand how health systems can grow in wisdom and care. In this group, I can test my ideas and connect with practice memories.
Carol: I want to share my lived experience as a carer by helping with research and use it to help make change for future generations.
Together, we work with clear ground rules. One person speaks at a time, everyone listens. If someone shares a personal story in the room, it stays in the room. We agree and disagree with uncompromising respect. Honesty is essential and expression is free – we can swear, but not at each other.
While we keep the conversation flowing, we get things done. We have spent time talking through the logic behind the project. We have developed information sheets for research participants. We have thought through scenarios that could bring up ethical challenges. We prepare to make sense of data together in the next stages of the research. We have gathered ideas on who to connect with in the later stages of the project, to share findings and learning.
We keep the conversation alive to catch ideas and build new understanding – of healthcare and of each other. We can all agree that hope lives where people sit around a shared table and speak their minds.
A Pre-implementation Study to develop and test an Integrated Discharge Intervention (PreSIDInt study)
As part of a research project funded by the National Institute for Health and Social Care Research, Professor Hamde Nazar and Dr Evgenia Stepanova explore what happens to patients during the transition from hospital to home. In this video, they highlight the essential role of involving patients and the public through meaningful PPIE (Patient and Public Involvement and Engagement).
To ensure a safe and inclusive space for open dialogue, the project established two PPIE groups—a women-only group and a mixed group—each meeting four times throughout the study. These conversations offered crucial insights into real experiences of hospital discharge, revealing gaps in current research and shedding light on challenges that patients regularly face, such as feeling “in limbo”—with limited information, no clear point of contact, and uncertainty about available support.
Hamde and Evgenia reflect on how these contributions shaped the research and deepened its relevance and impact.
Programme Development Grants award NIHR205674 A Pre-implementation Study to develop and test an Integrated Discharge Intervention (PreSIDInt study)
Professor Hamde Nazar sums up the event with PPIE member, Susan Mountain.
On 11th June 2025, the first of a series of events in June focussing on Virtual Wards (hospital at home) was hosted by the Newcastle NIHR PSRC. Representatives across many of the PSRCs contributed to the planning and organisation of this SafetyNet event.
Given the increasing drive for the use of technology in healthcare, the event brought together practitioners, researchers and patient and public representatives to discuss and consider the opportunity and challenges of the use of technology to support virtual ward service delivery.
The day started off considering the patient and public voice first and foremost. The figure below summarises discussions from a patient and public involvement and engagement (PPIE) session held earlier in the year. Concerns were aired about the feasibility of technology being appropriate and accessible to all people, with other considerations voiced about the reliability of technology and trusting its effectiveness and security. People acknowledged that there are key challenges to address within the system around the workforce being properly resourced and trained, and about the existing IT infrastructure being fit for purpose. By the end of the discussion, people had ‘warmed’ to the idea, appreciating the opportunities for efficiency and potential improvements in care. However, people were keen to see small incremental developments with rigorous monitoring and evaluation to ensure people and patients were able to keep up and be reassured about the safety, equity and effectiveness of technological advancements within the NHS.
The event then included keynote speakers providing insight into existing evidence for the use of technology, with regards to effectiveness, impact on clinical outcomes and economic repercussions. These have been well captured in a series of scribes created by Claire Hubbard from Nifty Fox Creative.
The final panel discussion saw the keynote speakers tackling provoking questions posed by the audience, e.g., ‘how do we ensure equity in technology-enabled virtual wards?’, ‘what are the biggest challenges for the implementation of technology?’, ‘how sustainable is the use of technology in virtual wards?’
There was rich debate, and we can safely say we did not go away with all the answers. Virtual ward care, and technology use in this service model is a quagmire of half-knowns and unknowns. There is need for scrutiny and evaluation of service models to understand what is working, where, how and for which patients and their carers.
The recently released NHS 10-year plan frames technology as the default mechanism to engage with health by 2035. This means trying to understand how technology is deployed and used in virtual ward care is crucial and continued resource and engagement across practitioners, researchers and public and patient representatives is needed.
On that note, one of our patient and public representatives who attended the event provides her experience and takeaway thoughts:
My name is Susan Mountain and I live with multiple long-term conditions. I became involved with public involvement in 2019 and since then I have been part of many research projects, I am a public contributor to the PSRC, AI Multiply, ARC, CNTW, Sunderland University PCPI team, a campaigner for smoking cessation and I help with the Secure Data Environment.
I attended the SafetyNet Technology Enabled Virtual Wards event and found it very interesting. I heard many people talk of virtual wards but to be honest no one really convinced me that they are currently safe. I personally don’t think they are looking at the families that are involved when a patient is sent home using the virtual ward apparatus. I am concerned that there will be too much pressure on the family.
On that note, one of our patient and public representatives who attended the event provides her experience and takeaway thoughts:
I understand that there are benefits: it reduces the pressure on hospital beds; research has shown people recover quicker in home settings and it reduces the chances of infections in recovering patients.
They talked about patients being provided with medical devices to track vital signs and that all data would be transmitted to the hospital where it will be checked at regular intervals. It did worry me if the internet stops working, then how can they monitor. I had an elderly Mam in hospital and even in hospital I had to advocate for her so what would happen if she was at home?
I believe the PSRC has an important role to play in ensuring that this is fully researched before it is rolled out. It is also vital that staff are properly trained and that there is appropriate internet access in the cases selected for treatment at home.
Blog 1
Raising awareness of the unpaid, unselfish work unpaid family carers do.
I wondered if this group was genuinely interested in involving carers in its research. I knew Tilly Hale from Liver North, a brilliant organisation where we had talks with leading consultants and I felt valued and learned a lot.
The Tilly Hale Carer research group inspires me in my own research to raise awareness of the unpaid, unselfish work unpaid family carers do. The involvement of NIHR as funders adds strength for me that the group is genuine. The group helps me to meet others like me, albeit with different reasons for caring. I feel a little less isolated and my voice is heard with this group. In hospitals, carers need a stronger sense of inclusion in decision making and being involved in the triangulation of care as they have knowledge of the patient (and possibly power of attorney).
I was a senior nurse in the NHS in Scotland and left to support a loved one. He was a brilliant academic but also an alcoholic. I have had a roller coaster journey navigating basic care at the point of need and all the horrors of alcoholism in the family. I genuinely thought he would die of injury through intoxication, or refusal of treatment from all services. I feel the patient is often consulted without the family or carer present, so the patient is often not giving informed consent.
Following my work and being part of the Tilly Hale Carer Research Panel, I am preparing a poster for a Glasgow dementia conference in May to raise awareness of the vital work carers do.
Public Contributor: Anonymous
Blog 2
Speaking openly and publicly about my experience brings some relief, knowing that health professionals and researchers want to hear the “good, the bad and the ugly” about failures of health care in the UK, is refreshing.
Hello, my name is Roy Fussey, and I’d like to share my and my wife Elizabeth’s story with you today. During the summer of 2003, Elizabeth, a long-time mental health Nurse went into work and suffered a serious assault from a sectioned patient. This assault has led to Elizabeth developing complex physical and mental health problems.
Since the assault, Elizabeth has been diagnosed with borderline personality disorder and is registered blind. She has put herself at risk, repeatedly leaving the house in an unsafe state, running towards traffic and taking overdoses. Over the years she has attempted to take her life on several occasions, abused alcohol and prescription drugs. In the years since the assault on Elizabeth, I have faced many challenging situations, many caused by her unpredictable and dangerous behaviours that often appear out of her control. Other challenges have been created by services either being unwilling or unable to provide appropriate and timely treatment and care for Elizabeth’s complex needs. On occasions simply discharging her and hoping her problems will go away.
For over twenty years my life has been a challenge and an “emotional roller coaster” at times not knowing what the next day will bring. I believe I am well placed to engage with Health Care public consultation. I have learned what works and what doesn’t. Speaking openly and publicly about my experience brings some relief, knowing that health professionals and researchers want to hear the “good, the bad and the ugly” about failures of health care in the UK, is refreshing. Being able to talk about my experiences brings some relief to me but also can be emotional and troubling.
I have been involved with several research projects with Newcastle University and involved with mental health Trust projects and staff development around carers and family members. I have considerable interest in personality disorders, and I believe it is still an area of health care that is still not fully understood or provided for. The effects on family members living with a person with complex needs can often easily be underestimated by services.
My motivation to participate in research and development is that no other person, family or carer should face the lack of understanding, empathy and failures we have faced on so many occasions. On a positive note, at the moment our lives remain difficult but stable. Brought about by consistency, understanding and empathy from services. But all this we had to fight for!
Researchers should not forget to inform all participants of the outcomes and how the research will be used.
Public Contributor: Roy Fussey
By Dr Matt Cooper, NIHR Newcastle PSRC, Safer Integrated Health and Social Care Environments Theme Research Associate.
Over the past year of the Tilly Hale Carer Research Panel, we have met on several occasions both in person and online. The sessions have been hugely beneficial to both myself and our research team. The purpose of the group was to establish a collaborative space where carers could help priorities and set the agenda for the research we are doing within the school and patient safety group. Initially I found it difficult to work out how to ensure the group made an impact and how we could become sustainable beyond the funding. I worried that the group would not have a single direction, and I wanted to ensure I brought meaning and a purpose to the group. Looking back over the past year I think the group has made more impact that I initially would have realised.
Since the group was established, I have had the absolute honour in being able to listen and learn from the experts in what caring should be about, the challenges they face, and where we need to be doing more to research to support the development of services. The carers in the group are passionate about providing the best support for the people they care for, while providing a selfless act of giving their time and energy, despite the challenges they face or the impact on their own health and wellbeing.
The group has informed my thinking and critical review of research more that I had accredited before, and they have made me think more holsitically about the research we can do. Within our research team we now have 7 projects in this space including, student carers, carers involvement in medication management, carers involvement in hospital at home care, carer wellbeing, and support for ethnically marginalised carers. All these projects I believe have been informed by the panel and give thanks to them and their openness to support this.
Of course, we are also working on an art piece which has been commissioned around what it means to be a carer, and below is an intial draft of this. This piece I hope can be sent far and wide to demonstrate the vitally important role carers play in the healthcare landscape and support the research we are doing. I thank the research panel for their honest reflection when developing this piece and I hope that it does justice to their experiences.
I am not a medic, nor an academic. For over 34 years, I observed and lived with someone who was constantly taking medication as he had had a transplant, then for around 20 years his health gradually changed, more conditions developed, and the number and levels of medication were a daily matter of existence. For around seven years I became a regular attendee at hospital visits, meeting consultants and learning about changes to his health, the consequences of these and the potential for enabling a good quality of life to continue. So, gradually my interest in the respective roles of patient, carer and medical practitioner grew.
Oliva Grant, Patient and Public Involvement and Engegement Lay Co-Theme Lead
“At the heart of it all, I think, RESPECT is fundamental.”
The one thing I observed was the need for listening, of all of us. My husband was the person needing the medial support but in later years I needed to be part of discussions and to understand, so that I could support him.
At the heart of it all, I think, RESPECT is fundamental. Patients know themselves and their circumstances best, academic understanding may lie with medics but each needs to listen to and consult with one another. It is not a one-way street.
During those years I did not know there was such a thing as PPIE. Learning about that came several years after his death.
In the early months of 2020, when alone at home in lockdown I was slightly ‘at a loose end’ and was approached by a senior medic at Newcastle who had spotted and cut out several cancers from my husband. He told me about the potential for joining, as a lay person, a bid for funding into the potential role for Artificial Intelligence in aiding the diagnosis of medication for people with multiple conditions. I am fascinated by the potential for AI (for good and ill) and multiple medications had been part of my life for years. So, I said yes.
There was though one condition from me to be part of this research. That the role of PPIE must be at the heart of the dialogue, researchers are not just doing this fascinating research for themselves, it has purpose. At the heart research is FOR patients, therefore patients must be integral to, listened to and heard. For that to work the researchers must be enabled to speak directly with patients, so training and enabling researchers to get this skill and ability to listen is a fundamental part of the work of PPIE. It is about being respectfully and mutually informed.
So, I would urge researchers to take up every opportunity to listen, meet and ‘hear’ what is said by PPIE members. Use lateral thought as well as deep interrogation type thinking and try to hear effectively is being said. People you are meeting are those for whom this research is directed. Essentially listen and learn, this is true both for PPIE members and researchers.