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.
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.
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.
When people talk about managing mental health the most frequent thing to do is to recourse to self help or looking to services to help. There is less recognition of the power of social networks for help and support based on connections and reciprocity around us.
Separating out the individual from their need for other people and ability to mobilise resources in order to manage effectively, has meant that the notion of a personal community of support (the array of personal ties with which people are located and embedded) has not tended to be included in understanding or responding to mental health need.
Now there’s a nascent social movement about networks.
In September, Dr Helen Brooks and I popped over to London for the 2017 Mental Wealth Festival, we were talking about the work we had done looking at how pets can help people manage their long-term mental health problems.
It’s common for academics to be found popping up at conferences and even music festivals these days, telling people what they have been finding out in an effort to spread the word and get the message heard. This was just the activity we were engaged in and one of the benefits for us as academics is that we also get to hear about others work and this gives us ideas.
Perhaps you are wondering what the Mental Wealth Festival (MWF) is all about?
The MWF takes place over 3 days in London . The first day takes place in the Houses of Parliament where Baroness Hollins hosts panel discussions on aspects of mental well-being and the next two days take place predominantly in City Lit, a further education college that serves London. Throughout these two days there is a plethora of wonderful sessions that can be accessed, free of charge, by those registered for the event. Attendees include those with lived experience of mental distress, both themselves and as carers; interested members of the public; policy makers; commissioners and professionals from every group with a role in helping those in mental distress.
It really is the most eclectic, informative and creative space to find yourself in. A place where many, sometimes opposing, worlds collide.
Our talk was full, so we had a great audience of interested people who asked questions all the way along and shared their own experiences of being pet owners. What stood out particularly, and resonated with the findings from our study, was the way in which pets give unconditional love which is consistently there regardless of how we are feeling.
Pets are trusted more than people many said and seem to have an intuitive understanding of their owners, knowing just when to demand to go out or to curl up for a cuddle.
For me most important was the knowledge, which we gained from the study, that for our cohort none of the participants had their pets considered as important network members as part of their care and yet all that had pets stated that they were essential.
The room completely agreed with this and the professionals in the room were clear that pets will be considered more seriously in future, in fact two of the attendees stated that they were relieved to have some research evidence to back up something they had wanted to attend to for a while but had felt reluctant to do so in case they were laughed at.
More and more of us are looking online for information to support our health (see Chris Allen’s work on support in Online Communities). In my research, I have found that the ability to get hold of that information and support, which is personal to you, can make a huge difference to how well you are.
I’m focusing on insulin pumps, which are an alternative means to deliver insulin to people with diabetes – compared to the more traditional multiple daily injections.
Insulin pumps have been developed to help people with Type 1 diabetes manage the condition better; both in terms of their quality of life and by more closely resembling a fully-functioning pancreas.
However, introducing a new health technology to an already difficult to manage condition is not necessarily simple, or easy.
Article by Martin Simpson-Scott, PPI Coordinator NIHR CLAHRC Wessex
Mark Stafford-Watson is one of our NIHR CLAHRC Wessex public contributors. He’s also ‘PPI Champion’ for our Theme 1 research team (Integrated Respiratory Care) – of particular personal relevance to Mark, as he has a long-term respiratory condition.
According to research by the Children’s Society there are estimated to be 700,000 young carers aged between 5 and 17 years old in the UK.
That figure surprise many people, and the charity goes on to explain how caring at a young age can impact a young persons’ education, health, development and quality of life.
Lindsay Welch is the Integrated COPD Team Lead; Solent NHS Trust and UHS NHS Foundation Trust
COPD or Chronic Obstructive Pulmonary Disease is a preventable disease and is one of the world’s biggest killers – it causes a narrowing of the breathing tubes and air sacs in our chest and lungs, reducing the amount of oxygen we can get into our bodies. There are several causes, air pollution and exposure to dust, but the main culprit is smoking. It is estimated that over three million people with COPD in the UK but only a quarter of those are diagnosed
The everyday management of a long-term condition is almost never done by individuals in isolation from others. The networks of relationships around people may include family members, friends, neighbours, colleagues, health professionals and even pets all of who play an important role in the management of long-term conditions. This is through, for example, their knowledge, support, help with accessing services, resources and valued activities.