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

 

 

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. 

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 21^st 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 

Public and patient involvement and engagement (PPIE) is a very valuable part of research, and one I have found both enjoyable and incredibly useful for planning projects and ensuring my work reflects the views of those the research is about. For my PhD project on the financial impacts of childhood illness, I have recently completed PPIE work with two youth groups in the North East – the Young People’s Advisory Group (YPAG) North East and the Youth Forum in Gateshead.

For both groups I delivered a session exploring young people’s perspectives of the barriers to young people’s healthcare access during the cost-of-living crisis (COLC). The experience I gained from these sessions working with the public and having engaging discussions has been extremely valuable for developing my skills as a researcher as well as providing me with perspectives I had not encountered in my background research. 

“Incorporating PPIE into my PhD project was an invaluable experience for developing both my research itself “

These sessions revealed local and accessible healthcare, transport, dependence and family situations, negative perceptions and mistrust, and communication as six key barriers to young people accessing healthcare in the COLC.

I was able to present the findings from the PPIE sessions back to YPAG so they could confirm no important points were missed, and the work is ready to be taken forward to help inform my future research. The group were also shown a youth theatre performance of Fed Up! about child food poverty in the North East at this feedback session, allowing the young people to see both how their input will be used to inform future research as well as watch a dynamic theatre performance informed by those greatly impacted by the cost-of-living crisis in the UK.

Incorporating PPIE into my PhD project was an invaluable experience for developing both my research itself and my skills as a researcher for working with the public. It was also an experience I greatly enjoyed, and would recommend to all PhD students to build into their research.