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:

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 

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.