Basingstoke Team Parish

Northern Patient day Leeds

3rd November 2017

On 28th October, PoTSUK and EDSUK were delighted to hold a patient day in Leeds, providing a support day for those in Northern England. Attendance was close to 100, with individuals travelling from as far as Glasgow to listen to a variety of speakers who kindly gave up their Saturday to assist.

Tanya Matilainen from Healthwatch Leeds kicked the day off to a strong start with an informative talk on understanding your healthcare system, accompanied by a quiz to clarify some of the grey areas surrounding healthcare provision. 

Lorna Nicholson from PoTSUK and Kay Julier from EDSUK gave an overview of the purpose and aims going forward for these charities. Both highlighted some of their latest achievements, including raising awareness and updating diagnostic criteria to further direct medical professionals towards providing appropriate care to those with EDS and/or PoTS.

Laura Maple provided a patient's experience living with EDS and PoTS, highlighting common themes such as misdiagnosis before reaching a correct diagnosis, whilst sharing her huge improvements seen in quality of life through the introduction of daily exercise.

Adam Foster, better known as ‘The Fibro Guy’, talked through the importance of understanding your body’s natural movement to reset negative associations with particular actions, which can result in an increased pain experience. He shared some of his success stories of patients with EDS, PoTS and CSF leaks that have seen huge improvements through exercise and rehabilitation. 

Georgina Hardy, a recent graduate from Leeds Beckett University, shared the results of a questionnaire carried out for her dissertation that looked into the different coping mechanisms used by PoTS patients, highlighting the importance of self-love and positive outlook whilst avoiding self-blame for something that is not in our control.

Jenny Welford, an occupational therapist and PoTS researcher, discussed the difference between fatigue and tiredness, engaging patients in groups to list the symptoms associated with fatigue. Jenny suggested an extensive variety of coping methods to assist in day-to-day life, and provided a fatigue diary that allows patients to record their levels of fatigue throughout the day to allow them to discover what kind of things are highly strenuous tasks and what requires low input. Further detail available here

Mary Wren finished the day by giving a talk on living with chronic illness,building on personal experience to consolidate the importance of maintaining mind, body and spirit. Mary emphasised that our wellbeing relies on feeding all three aspects of our being, and that sometimes we may have to alter our views of who we once were to be at peace with who we are now, talking about her experience of moving from a ‘doing’ person to a ‘being’ person.

Overall, the day was well received by those who attended, and the day covered a broad spectrum of topics to provide patients with a few ideas of where to head next in their journeys with EDS/PoTS. Many thanks go to our speakers for providing a very informative day and for sharing their personal experiences. Thanks also go to all those who assisted in the organisation of the Northern Patient Day.

Presentations available here:

Tanya Matilainen - Understanding you health and care system

Kay Julier -EDS UK

Georgina Hardy - Research findings

Jenny Welford - Fatigue management

Dr Mary Wren - Living well with Chronic illness



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