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.
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.
In 2015 I was fortunate enough to be awarded some funding from Solent NHS Trust to explore the networks of people with long term mental health issues. This project looked at how people manage their networks day-to-day and when they are in crisis, looking to see what the differences were between networks and how people negotiate the relationships within them. All the participants were recruited from community groups and many of the participants were students of a local Recovery College*.
Our muscles play an important role in our health and grip strength is a good way of measuring how well our muscles are doing. Our grip strength builds through young adulthood to reach its peak in our 30s after which it gradually tails away. It is a reliable and valid way of evaluating someone’s hand strength, which in turns provides an objective measure of the skeletal muscle strength and function in their whole body.
Professor Anne Rogers explains how weaker social ties play a role in helping people manage a long term illness.
With ever more attention on the NHS and how many nurses and doctors are needed to give people the best care, one part of the health equation is going unnoticed – What attention is being paid to the role of the patient and their extended network of relationships? In early 70s West Coast America a piece of research by Anselm Strauss and colleagues examined a set of questions on ‘self-care’.
Here at the CLAHRC Wessex we have been using and developing an interactive tool called GENIE . This is designed to engage and link people with long-term health conditions to social activities and support they value and find useful.
We have been working on the Isle of Wight with the My Life a Full Life team and other organisations to see how we can integrate GENIE as part of day-to-day support for people. Last week we had our first meeting, after months of using the system there to work towards making GENIE ‘Business as Usual’.
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