Not so long ago CLAHRC East of England Research Capacity in Dementia Care Programme (RCDCP) joined forces with the University of Southampton Alzheimer’s Society Doctoral Training Centre to provide a European Summer School for 17 dementia care doctoral students. Hosted by the University of Linköping in Sweden, the programme enabled participants to share ideas, build international partnerships, and learn from leaders in dementia care research.
Professor Jackie Bridges explains some of the lessons we can learn about caring for people with dementia.
She was particularly struck by the approach of a day centre she visited whilst on the trip.
One of the great things about being involved with CLAHRC Wessex has been the opportunity to engage with other research teams around the country doing similar work. A group of us have been part of a network of people across England, Scotland and Wales who are interested in acute kidney injury (AKI). A challenge with AKI research is that it can be misleading if you don’t use the same methods and definitions to define the condition.
Vivienne Windle is the public and patient involvement contributor for the study and co-author of this article. Dr Melinda Taylor is Senior Research Fellow in Organisational Behaviour for NIHR CLAHRC Wessex Data Science Hub based at the University of Southampton
Health Education England invited the Data Science Team to evaluate the training element of four projects aimed at enhancing frailty care across Wessex. The projects are outlined in our two previous blogs.
We requested public and patient involvement (PPI) and were fortunate in being introduced to Vivienne Windle, an experienced PPI representative, who made a valuable contribution to our study. Naturally, Vivienne was engaged in our ongoing discussions about the nature of frailty and we invited her to share her insights, which you can read below.
What is frailty?
When I was asked, as a PPI contributor, to get involved in four projects dealing with frailty, an image came into my head of a frail, small, elderly lady, or the heroine of a Victorian novel who keeps fainting.
Dr Melinda Taylor, Senior Research Fellow in Organisational Behaviour, NIHR CLAHRC Wessex Data Science Hub
The first blog in this series described how health professionals in our study found it difficult to define ‘frailty’ but agreed that it was an extremely broad concept with no defined boundaries. This has an impact on training in frailty care. This second blog outlines our participants’ views on frailty care training.
Our study evaluated particular aspects of four initiatives intended to enhance the care provided to people regarded as frail. The diverse nature of the initiatives further demonstrates the complex nature of frailty.
There is recognition that person-centred self-management needs to emphasise what people with long-term conditions value and how they engage with members of their networks in everyday settings.
Earlier studies indicated that the Genie* intervention can support this process. This is by for example deepening existing support and adding new groups and activities (e.g. walking groups), tools (e.g. pedometers), and online resources (e.g. Facebook).
*Genie™ is an online tool used to support people to manage a long term condition. It connects people to the resources surrounding them in their community allowing them to take part in activities or utilise support to maintain and manage their health and wellbeing.
It was created at the University of Southampton and funded by NIHR CLAHRC Wessex in partnership with My Life a Full Life and The Health Foundation.
In a study conducted by the Genie research team (pictured) on the Isle of Wight we wanted to develop a better understanding of the processes through which such changes occur. We found two pathways of engagement with networks following the Genie intervention.
Accident and Emergency wait times seem to be constantly in the news. Less commonly but equally importantly are headlines that waiting lists for elective operations and procedures are on the rise. Although these topics hit our headlines regularly there is actually very little evidence and understanding behind the reasons for these changes in NHS services, and how the NHS can take positive action to cope with these issues.
From what we understand a lot of the currently held beliefs around the causes for pressure on NHS services come from very basic, non peer-reviewed, and potentially flawed analyses. It does not need too much explaining that making decisions based on these might be a bad idea.
This is the first of a series of blogs drawing on a study of training for those working in frailty care, with additional reflections from other work.
What is frailty?
Before looking at training in frailty care, it would be helpful to understand something about what frailty is. Descriptions of frailty will almost always refer to the complexity of the condition. But what makes frailty different to other conditions that could be described as complex? We might think perhaps of multiple sclerosis, in which the patient may experience a range of clinical conditions and in which physical, psychological and social factors need to be taken into account. The same can be said for patients diagnosed as frail. Well, in a recent study, our participants considered that the complexity of frailty; how two patients could have such a wide disparity of signs, symptoms and needs; its evolving nature; its acute susceptibility to interventions or to the lack of them, and the high number of professions, sectors and organisations necessary to carrying out effective frailty care, were sufficient reasons for it to stand apart.
The respiratory nursing team in Southampton came away with two awards from the Association of Respiratory Nurse Specialists (ARNS) conference in May.
Emma Ray won best Poster Spoken Session. She said:
I was very pleased to have the opportunity to share the findings of our world COPD day event addressing smoking prevention in school children in Southampton at the ARNS conference. It was the brilliant idea of our PPI champion Mark Stafford-Watson who sadly passed away last year and is truly missed by our team.
I remember being asked in my interview for nursing why I wasn’t applying to be a doctor. There’s no simple answer to ‘what nursing is’ or ‘what it means to me’ but the answer I gave then is probably as close as I’ll ever get.
I’m not that interested in disease but I am interested in people. Nursing is about supporting and helping people, often through their most difficult times. While it’s hard to distinguish this from many other caring professions the key (to me) is that the focus is on the person comes first and the rest follows.
We know that nurses miss or delay taking patients’ vital signs (such as pulse, temperature and blood pressure) at night. Until now, no one knew why.
The NHS expects hospitals to use ‘Early Warning Scores’ to measure how ill someone is. These are based on the observation of ‘vital signs’ – measurements of things like pulse, temperature, blood pressure and breathing speed. The higher the score, the more often someone’s vital signs should be checked. This is so staff can spot the early danger signs of someone becoming very unwell, in time to help them.
Your local hospital will probably have an ‘early warning protocol’ that says how often people should be checked according to their early warning score. At higher levels observations will need to be done in the middle of the night. Despite this, we know that nurses are much less likely to do the observations that are expected to be done at night.
This site promotes independent research by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care (CLAHRC) Funding Scheme. The views expressed in this blog are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health