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.
There comes a point in everyone’s life when they get news that changes their life…of course it’s not always bad. Think “you’ve got the all clear” or “you’re going to have a baby”.
But what if that’s not so good. “You have diabetes” or “you have developed COPD”. In those cases firstly you might ask the doctor or nurse- “what can you do?” and “how is it going to affect me?”
Having conversations about the best course of action in the event a person’s condition deteriorates is difficult for everyone involved, whether it is the patient themselves, their family or carer and the clinician.
After an initial study on Advance Care Planning (A. Richardson, S. Lund1), research into the current application of treatment escalation plans across the country, and early engagement with some of the acute trusts in the Wessex region, it was apparent there was a desire to improve this process.
My colleagues and I recently published a paper which describes how we created a model to show how people with diabetes become less dependent on primary care and more able self-managers.
We used maps created by general practice staff to show how their patients progress through the system following diagnosis.
In the current system, once treatment has been decided on, the frequency of appointments decreases and people are expected to self-manage with support from regular review appointments. Seeing the model and talking it through with GPs and others helped us to consider some of the shortfalls in the system.
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’.
Many patients whose condition becomes worse during their stay in hospital face uncertainty about the likelihood of recovery. For patients, families and healthcare professionals deciding on the best thing to do can be hard.
By Claire Ballinger and Mark Stafford-Watson – Chairs, Wessex Inclusion in Service Design and Delivery (WISeRD) group
It’s the end of our first year in CLAHRC Wessex, we have been thinking about our progress in involving patients and the public in our work (or PPI as it’s called), and reviewing where our focus should be for the coming year. We have settled on five strategic aims:
- Develop our capacity for patient and public involvement (PPI) in research and implementation programmes
- Promote our CLAHRC Wessex activities to the wider public (public engagement)
- Evolve and measure ways to include patients and the public to identify research priorities
- Develop a group of patient and public researchers
- Measure the impact of patient and public involvement within CLAHRC Wessex
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’.