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
Alongside Dr Anna Robinson-Barella, Dr David Sinclair, Dr Vanessa Davey, Prof Barbara Hanratty, and Prof Adam Todd in the journal of Age and Ageing.
Understanding polypharmacy for people receiving home care services: a scoping review of the evidence
This review comprehensively maps the evidence on the prevalence and management of polypharmacy in home care settings and highlights promising strategies for enhancing medication quality. However, significant gaps remain in understanding of how care staff and recipients experience and manage complex medication regimens, underscoring the need for further research in this area.


NIHR Newcastle Patient Safety Research Collaborative: Improving Patient Safety with Data
In the evolving landscape of modern healthcare, increased life expectancies, intricate dynamics of multimorbidity and disparities in healthcare access and outcomes, healthcare professionals face the challenge in optimising treatment whilst minimising risks to patient safety. The Newcastle Patient Safety Research Collaborative (PSRC) sets out to work across national networks aiming to improve patient safety by focusing research on service delivery, transitions between care settings, clinical decision making and patient safety behaviour, with a key emphasis on reducing safety inequalities in health care. The PSRC network will serve as a platform for national connectivity between key stakeholders such as NHS England, NIHR Infrastructures, Charities, Industry, and other partners.
Impact of accessing data
Data are a key driver in providing researchers a platform to conduct ground-breaking research, and in turn supporting healthcare professionals in improving the delivery of patient care and safety. The NHS have set out a recent strategy aiming to use data more effectively, to improve patient care and save lives. With this escalating drive on using patient data for ground-breaking research, it is paramount that it is dealt with in a safe and ethical manner. Therefore, the Department of Health and Social Care have been working with NHS England in investing in a data sharing system to allow for NHS data to be accessed on a shared platform, leading to the development of the Secure Data Environment (SDE). The SDE plays a fundamental role in dealing with NHS data in a sensitive manner but still allowing for it to play a pivotal part in research.
Why is this valuable to members of the public?
Having access to NHS data will enable us to address many issues that can affect both the general population and smaller populations groups in insistences of rare conditions. NHS data are reflective of the current population, offering great diversity and relevancy. These data can be used by researchers to better help understand diseases and identify lifesaving treatment. It also allows for current NHS services to be audited and analysed for quality improvement.
Working in partnership
Steve Lucas – Senior Delivery Manager
Recently, the North East and North Cumbria (NENC) Secure Data Environment (SDE) Project Support Service (PSS) has teamed up with the PSRC to improve patient safety research efforts. This collaboration is not just about data access—it is about shared goals. Through monthly meetings between the NENC SDE PSS and the PSRC’s research teams we can collectively discuss research objectives and pinpoint data needs, ensuring a tailored approach to supporting the PSRC’s objectives. This partnership is not just confined to regional boundaries. With the Newcastle PSRC acting as a national nexus, connections are forged with key stakeholders across the healthcare spectrum. This broader network enriches the collaboration, fostering knowledge exchange and amplifying the impact of research efforts. In essence, the synergy between the NENC SDE PSS and the Newcastle PSRC has allowed for us to pool resources and expertise, to advance patient safety research, paving the way for a brighter, safer healthcare future for all.
Significant steps
As a PSRC, we have collaborated closely with NENC SDE PSS in developing the SDE and to secure access to critical data that will enable us to address significant questions directly related to patient safety. This opportunity has been an exciting opportunity and with a diverse range of skills and clinical backgrounds, as a team, we recognise data can play a pivotal role in our research, especially in understanding how pressing issues are affecting people within the region.
Next steps
Currently, this platform is in the initial phase of being set up. Numerous meetings have taken place, involving the research team, NENC SDE PSS and other key partners, to understand how data will be utilised and to ensure the upmost confidentiality of sensitive information. We are now in the final stages of securing approval for access to key datasets.
Natalia Ochodzka, MSci Biomedical Sciences Graduate
Natalia held a summer internship between May and June of 2024 with Dr Matt Cooper. Natalia worked on a systematic review looking to identify digital toolkits used in the self-management of long-term conditions within the home and reflects on her internship here:
Hi! I am Natalia, a recent graduate of MSci Biomedical Sciences with a Professional Placement Year programme at Newcastle University. I was also a research assistant at the School of Pharmacy for six weeks in May and June this year. My project was a scoping review focused on home-based interventions that support mental and physical health self-management in patients with multiple long-term conditions. I was based at the Newcastle Patient Safety Research Collaboration office and spent 60 hours surrounded by a wide range of researchers – from undergraduate interns, through research assistants and doctoral candidates to associates.
The nature of a literature review is very methodological; you need to follow certain steps to diligently get through thousands of publications to narrow your search to the most relevant reports, which then combined will (hopefully) suggest an answer to your research question, or at least provide you with the most relevant information on the search topic. Although it seems like an individual job, the part of the internship I enjoyed the most was interacting with my team! Daily discussions on topics related (and not so much) to our research questions made me realise that there is no one right way to do things right and that I should never limit myself to thinking in the regular, three-dimensional way. I learned distinctive styles of working, studying, and teaching, and all of it combined made me a better researcher. I saw the value and consequences of diligent work ethics, networking, and collaborating with people from outside of your study/ work circle. I am certain that this experience alongside the support received at PSRC will empower my future in clinical research, focused on physical activity and experimental medicine.

Eleanor Allen MSc Forensic Psychology Graduate
Eleanor held a summer internship between May and June of 2024 with Dr Matt Cooper. Eleanor worked on a project evaluating a hospital to home discharge service with a local charity. Eleanor reflects on her internship:
My research internship spanned six weeks and primarily involved the design and delivery of a service evaluation. This project was commissioned by a local charity and focused on hospital-to-home transitions in care. Coming from a forensic psychology background, the project area was relatively unfamiliar to me. Nevertheless, the skills required were transferable, allowing me to utilise my previous experiences as a volunteer researcher, in court, and from my research methods training. While I had some prior experience with qualitative data collection, this was the most immersed and involved I had been with a project. I was responsible for coordinating participants, data management and conducting one-to-one qualitative interviews with the charity staff members. Throughout the data collection process, we reflexively updated the interview schedule, meaning that every interview influenced future iterations of the questions. This led to effective and meaningful data collection and allowed me to incorporate my insights from the interviews. I presented my initial reflections and findings at the School of Pharmacy conference. The event gave me the opportunity to discuss the project with others from a broad range of academic disciplines, and gain insight into the research community at the school. I was particularly interested in the language used by charity staff members, especially relating this to self-identification as a barrier for carers seeking help. Often, staff held dual roles as carers and employees, and their language reflected how normalised their caring roles were. The conference was an excellent opportunity to meet other researchers and learn about ongoing projects within the school.

Overall, this internship was extremely valuable. Conducting research in an applied context was highly rewarding, and despite my background in forensics, I was able to apply my existing skills to the role. My experience and insights were valued by the research team, and I felt able to contribute meaningfully to the project. I also developed novel skills, such as communicating with a wide range of people, including participants, external partners, and academics. My qualitative interviewing and data management skills were also strengthened through the project. I am happy to say that I have now started as an assistant psychologist in an NHS Trust conducting research! I spoke about my experience with qualitative interviewing and recruitment in my application. Above anything else they seemed to like how I spoke about rapport building and connecting with people. I’m super grateful for the experience because it really built my confidence with that. Thank you Matt!
Arisha Ahmed MSc Pharmacy Graduate
Arisha held a summer internship between June and August 2024, supervised by Dr Matt Cooper. Arisha worked on a systematic review looking to identify digital toolkits used in the self-management of long-term conditions within the home and reflects on her internship here:
This summer I undertook a research internship with the School of Pharmacy at Newcastle University with Dr. Matthew Cooper as my supervisor. This project has allowed me to develop skills valuable in both research and my own professional development. My role within the team included, developing a systematic search strategy, navigating research databases (e.g. Medline, Embase, PsychINFO and CINAHL), study selection, evaluation of research quality in addition to completing a data extraction. Whilst the project was rewarding, we faced a few setbacks that taught us important lessons about the research process. For example, the screening process and data extraction took longer than initially anticipated which impacted the long-term plan of the project. These challenges taught us the importance of setting realistic deadlines and maintaining flexibility within project planning. The setbacks allowed me to truly understand the complexity of the research process as well as the importance of delegating tasks to each team member effectively to ensure a robust and timely piece of research was produced.
The findings from this research will continue to contribute to ongoing research activities within the School of Pharmacy at Newcastle University. Outcomes from this project aim to advise healthcare providers with invaluable knowledge as well as inform advancements in digital medicine. The project team are particularly interested in how to inform and guide Artificial intelligence (AI) systems to create AI driven health solutions. These innovations have the potential to significantly improve patient care and enhance clinical decision-making in the future.
As a healthcare professional, this internship has allowed me to critically analyse studies, assessing their rigor, relevance and impact to provide evidence-based care to my patients. It has also enhanced my appreciation for the vast array of research available to us in medicine. I am excited to further explore how medical policy, and advancements can be shaped by research, and I hope to pursue a career in research alongside my role in the NHS, focusing on integrating innovative digital solutions to patient care.

Co-theme Lead Professor Adam Todd of “Safer management of polypharmacy in multiple long-term conditions” and Professor Clare Bambra of “Safer Management of Multiple Long-Term Conditions in Disadvantaged Communities” co-authored a recent article in the BMJ Open “Ecological study of the association between the English national vaccination programme and area deprivation inequalities in COVID-19 mortality“
The paper concludes that inequalties in COVID-19 mortality rates could be significantly reduced by the National COVID-19 vaccination strategies. However barries to vaccination uptake in the most deprived areas need to be overcome if more is to be acheived.

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.

Our Data and AI CoTheme Lead Professor Nick Reynolds has been invovled in the developement of AI, called DeepMerkel, which can determine the course and severity of aggressive skin cancers enabling medics to personalise treatment.

To hear more about DeepMerkel visit the Newcastle University Press office page and view the associated papers below:
- Andrew TA, Alrawi M, Plummer R, Reynolds NJ, Sondak V, Brownell I, Lovat PE, Rose A and Shalhout S (2024). A Hybrid Machine Learning Approach for the Personalized Prognostication of Aggressive Skin Cancers. Nature Digital Medicine Ref NPJDIGITALMED-11157R1
- Andrew TW, Erdmann S, Alrawi M, Plummer R, Shalhout SZ, Sondak V, Brownnell I, Lovat PE and Rose A (2024.) A multivariable disease-specific model enhances prognostication beyond current Merkel cell carcinoma staging: An international cohort study of 10,958 patients – ScienceDirect. Journal of the American Academy of Dermatology. : Ms. No. JAAD-D-24-01601R3
Kayleigh Davison Lead Advanced Pharmacist Practioner and NIHR In-Practice Fellow, Newcastle University,
Supervised by Professor Andy Husband (Director of NIHR Newcastle PSRC) and Dr Anna Robinson-Barella (EDI Theme Lead for NIHR Newcastle PSRC).

Hi I am Kayleigh Davison, Lead Advanced Pharmacist Practitioner and NIHR In-Practice Fellow, Newcastle University. I’ve recently become the only pharmacist to be awarded a National Institute for Health and Care Research (NIHR) In-Practice Fellowship, which I’ll be balancing alongside my clinical work in General Practice. The NIHR In-Practice Fellowship is an incredible opportunity that will allow me to develop as a researcher without stepping away from my clinical work. I started working in general practice as part of the NHS pilot for Clinical pharmacists in general practice and now work as an Advanced Pharmacist Practitioner. I have always worked and wanted to work within primary care providing the first point of contact in the healthcare system for our patients providing holistic care. I have been very fortunate to develop clinically within primary care over the years under the supervision and mentorship of excellent GPs. Through this time I have developed a special interest in polypharmacy (when patients are prescribed multiple medications) and in particular over 15 regular medications.
My research focuses on polypharmacy (when patients are prescribed multiple medications) and health literacy. Health literacy is basically how well someone can understand and use health information to make decisions. Shockingly, 61% of adults struggle with understanding basic health information. For those on many medications, this can make managing their treatments much harder. But the connection between polypharmacy and health literacy hasn’t been thoroughly explored in the literature yet. My aim is to shed some light on this issue and find ways to better support patients who may find complex medication regimens challenging.
My advice for others that may want to consider a clinical academic career is to start talking to your colleagues in academic institutes about your ideas or opportunities that may be available. There is also a lot of support available via National Institute for Health and Care Research (NIHR) and within our region we are fortunate to have NHIP academy who supported me alongside the academics within the Newcastle Pharmacy school throughout my application process explaining the different fellowship options to giving me feedback on drafts, the academy was there every step of the way.
NIHR Newcastle PSRC, Professor Annette Hand
On a dull and foggy Thursday afternoon I travelled down to the House of Lords in London to represent the Newcastle NIHR PSRC for the launch of the National State of Patient Safety Report (2024). This report, first published two years ago, is produced by the Institute of Global Health Innovation at Imperial College London and is commissioned by the charity Patient Safety Watch. The report assesses the state of patient safety within the NHS, using all available data, and provides a detailed picture of the national state of patient safety in England.

After making my way through security I was ushered up a grand and spiralling staircase to the beautiful River Room to mingle with academics, researchers, politicians and charity staff, all personally invited due to their connection to improving patient safety. The event was hosted by Professor Lord Ara Darzi, Co-Director of the Institute of Global Health Innovation, who informed us that unfortunately there had been a decline in 12 out of the 22 metrics that had been reassessed. Lord Darzi stated that “Our latest report on patient safety in England reveals alarming declines…The NHS is now falling behind leading nations in patient safety. We urgently need to address these issues to repair the health service and provide high quality care for all patients and their families.”
He provided some of the headlines of the report which are:
- In 2023, the number of deaths that could have been avoided if the UK matched the top 10% of OECD countries: 13,495 deaths
- In 2023, the UK ranked 21st out of 38 OECD countries for patient safety
- The NHS spends £14.7 billion a year treating people who have been harmed by mistakes made during their care.
- Cost of harm for claims resulting from incidents in 2023/24: £5.1 billion
- In June 2024, the number of people waiting for elective care was 7.6 million
- 2 in 3 staff feel unable to carry out their jobs fully due to workforce shortages
Whilst these are all stark statistics Lord Darzi eloquently illustrated the personal impact of this report stating that we must never forget that behind every statistic outlined in this report, is a life. A life cut short, or seriously impaired. A family in grief, or now consigned to be life-long carers. He described the only way we can properly commemorate the people affected by patient safety failings is to learn and improve.
The report also highlights that the impacts of unsafe care are not spread evenly across England but are greater in the North than the South, something we are only too aware of. The report also details a complex picture of national patient safety with evidence that the health system cannot keep pace with the number of recommendations already made on it. What was reassuring was rather than adding further recommendations it was advised that a focused set of patient safety priorities must be agreed that we can all work towards, and something I expect we will hear more about this in 2025.
We also briefly heard form Jeremy Hunt, Chair of Patient Safety Watch and Baroness Merron, the Minister for Patient Safety, on their progress and commitment to the patient safety agenda. Finally, we hear from Merope Mills, a senior editor of the Guardian and patient safety campaigner, providing us with an emotional update on the progress of Martha’s Rule NHS England » NHS to roll out ‘Martha’s Rule’, and the fantastic impact this is already having to so many lives within the NHS.
I had plenty to reflect on during my long journey home, and whilst the report does provide some very sobering statistics, I know that together we can change this trend and make a real difference to patient safety outcomes.
Read the report: https://www.imperial.ac.uk/stories/National-State-Patient-Safety-2024