Involving our patients: the first posterior cortical atrophy support group

16 December 2014

Earlier this month we held our first support group for people with posterior cortical atrophy (PCA).

PCA is a relatively uncommon cognitive disorder in which people experience progressive and disabling difficulties with visual processing, often followed by other cognitive complaints including memory and language difficulties.

The meeting was enthusiastically attended by patients, carers and family members along with members of the cognitive disorders clinic team. The aim was to provide a more detailed insight into clinical and research work taking place at the Anne Rowling Clinic, as well as to explore ways patients and carers may offer advice and support to each other.

There was a relaxed and informal format. Suvankar Pal, Consultant Neurologist, outlined the purpose of clinical assessments and investigations that take place in the Clinic, as well as the work of the Edinburgh Cognitive Diagnosis Audit & Research (DART) Register. This was followed by an open group discussion during which patients conferred about their own symptoms and diagnostic journeys.  We discussed ongoing research programmes designed to help with earlier diagnosis and improve understanding of the natural history of the disorder, with comments from Thomas Bak (Clinical Research Fellow) and Shuna Colville (Senior Nurse Specialist).  

We encouraged participation throughout the afternoon with group discussion, message boards, feedback forms and one-to-one conversations with clinic staff. We were particularly keen to hear ideas about how we can improve our service. We also discussed the sort of research questions that patients and carers would like answered, as this information is crucial in helping us to design and implement future studies .

Feedback about the meeting was extremely positive. Patients and carers mentioned the benefits of meeting with others to share experiences. A further series of meetings is planned in the next year, with multi-professional interactive presentations.  As a direct outcome of this meeting, we also aim to produce information leaflets about PCA, including a list of useful contacts and links to relevant web pages.

The patient/public voice is an invaluable aspect to any research study and any input is greatly appreciated by us all.

Shuna Colville, Manager of the Anne Rowling Regenerative Neurology Clinic

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