Long Term Condition Reviews

I live with Dilated Cardiomyopathy and last year I had a really good experience of care, in the form of a long term condition review by my GP practice.

I am a Changemaker for Cardiomyopathy UK and one of the points on our Agenda for Change is focused on better care planning for patients with Cardiomyopathy. Our desire to advocate for improved care planning for Cardiomyopathy patients comes from our members telling us that they felt ‘lost’ in the system, confused about what the following steps were in their treatment and how to access additional support. This is worrying as timely access to specialist treatment and support services improves outcomes for patients, as supported by NICE Guidelines.

My GP practice (Pinewood Surgery) supported me with a Long Term Condition review tailored to CHD and HF care. I received a form which asked questions on my current symptoms but importantly also asked about my mental health and general wellbeing. During an appointment with a HCA basic tests were ordered and my answers on the form were reviewed. I was also signposted to support my mental health and weight loss. When the results of tests were available I attended a second appointment with the practice nurse, who reviewed the results, discussed my medication and gave me the opportunity to ask questions about future care planning. We also reviewed the discharge letter from my Heart Failure Nurse at Ipswich Hospital, and it is clear that it was really helpful that this referral was so detailed and full of advice and recommendations on continuing care. It was such a positive experience to have time to discuss my condition, review my medication and receive support for staying well.

I have given feedback to my practice on how supportive I found this process and my comments, suggestions and offers to help advocate for wider use of the process are being circulated around the Primary Care Network.

As a Cardiomyopathy Changemaker I believe that this Long Term Review process could provide essential support to patients with Cardiomyopathy who feel "lost" in the system. These patients condition is often not effectively managed and thus end up with more frequent episodes of acute care. I have registered my interest in taking part in various patient participation groups across Suffolk but many are still paused due to the COVID19 pandemic.

I would love to help work towards more wide use of this system (that was orginally trialed by Stow Health) , and through co-production improve and tailor it to improve patient outcomes. Is there an ICB contact who could meet me to discuss this?