I’m Nuno Tavares, a staff nurse at Queen Alexandra Hospital and I’m also a PhD student carrying out research for NIHR CLAHRC Wessex and Portsmouth Hospitals NHS Trust. My research is about improving end of life care for patients with COPD.
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’.
I’m Ryan Buchanan, a specialist registrar doctor in liver disease and a PhD student carrying out research for NIHR CLAHRC Wessex. My project is centred on Hepatitis C in the Isle of Wight community.
Hepatitis C is a virus, which unlike other viruses such as ‘flu’ or the common cold directly affects your liver. It is usually passed from person to person via blood and develops into a long lasting infection. The virus actually causes very few symptoms allowing it to hide within the body making people unaware they carry it.
Living with a serious long-term condition is often hard and complex work. My team and I are interested in finding ways to reduce complexity and lift the burden for people with these conditions, and their families, at end of life.
To help us think about the kind of research questions we should be asking we held a research forum at Freemantle Community Centre in Southampton. We invited people with a range of conditions to join us and to inform our work.
NHS clinical commissioning groups across the UK are all focused on improving patient care while facing the pressures of an aging population, increasing volumes of patients with multiple complex health problems and the stark political reality of the need to cut costs.
The complexity of these decisions and how to improve care is often enormously underestimated in the popular media. Take for example, the waiting time performance of accident and emergency (A&E) departments in the UK.
Improving the network of support for people with long term conditions is a more sustainable way to help than appealing to them to change their behaviour. Connections between people often encourage action and the use of the resources around them in a more meaningful way in their everyday lives.
At CLAHRC Wessex our flagship project is the implementation, across the region, of GENIE a web-based tool which is designed to assess and develop the support networks of people with long-term conditions. People can map their support networks and state their preferences and needs in order to link them to local organisations for health and well-being support.
When dementia occurs in people under the age of 65 years, it often presents in unusual and diagnostically challenging ways. There may be changes in language, behaviour or navigation difficulties, and frequently, it’s not Alzheimer’s disease, but other forms of dementia such as frontotemporal dementia.
Here’s what they wrote.
Anya de Longh – Patient leader and self-management coach
Life, as the famous lyric goes, is what happens to you while you’re busy making other plans. In November 2010, Anya was entering her fourth year of study at University of Cambridge medical school when increasing ill health forced her to cease her work to become a doctor. She subsequently received a diagnosis of a number of long term neurological conditions.