Monday, 16 February 2015

Hello and welcome!

Hi, I'm Jess and I'm one of the first generation of health champions working with the fatigue CRESTA (Clinics for Research, Evaluation and Service in Themed Assessments) at the Campus for Ageing and Vitality in Newcastle upon Tyne in the UK. The fatigue CRESTA is focused around diagnosing and supporting those with chronic fatigue as a symptom of chronic illness; a team of health professionals with different skills and expertise work together to help patients to learn to manage their conditions and optimise their quality of life.

The health champions are a group of patients aiming to enhance the experience of patients of the clinic and this is the first post on our shiny new blog. It is just about how things have got to where they are, from my perspective. I'm currently leading the IT side of things, but there will hopefully be contributions from other health champions, all with their own unique stories, along the way!

Personally, I've been a patient at the CRESTA fatigue clinic for about 9 months, as I have ME/Chronic Fatigue Syndrome and Neurally Mediated Hypotension/Vasovagal Syncope, as well as a few other associated problems. I've actually been ill for about 5 years (with about 1 year severely affected) and have been under the fantastic care of various members of the ME/CFS team for most of that, but autonomic problems were suspected just over a year ago, and that's when I was referred to Prof Newton at CRESTA, and the NMH diagnosis followed. I'm unfortunately rather well acquainted with various hospital departments, but the CRESTA looks and feels totally unique, and basic autonomic testing was done at the clinic directly before my first consultant appointment which was so much more convenient than having the testing on a different visit and waiting for results to be sent through. I've also been involved in some research which has been interesting, and I like the idea that it could help improve understanding and eventually lead to treatment.

The fatigue CRESTA is normally for patients who can't access the ME/CFS services, as they don't meet the criteria due to other conditions, but patients like me with suspected autonomic dysfunction can be seen at the clinic.

When the opportunity to be involved with the health champions project was offered to me, I was unsure what would be involved or what I could offer, but was keen to help the clinic and other chronically fatigued patients if I could.

I went to the first training day, and still really didn't know what to expect, but it was interesting to meet others with different fatiguing conditions. I went to the second training day and got to know some of the others a little better in the morning. The afternoon involved a big meeting with different health professionals, researchers, people from Altogether Better and NHS England, as well as those of us training to be health champions with the clinic. It was a big discussion about what we hoped to come out of the project and working out how we would all work together so that it would be mutually beneficial. The thought of it was scary in a way, but in reality it was very non-intimidating and everyone was excited about the project and very respectful of one another. I was in a group with the fatigue CRESTA's physiotherapist, several researchers and a few other health champions. Others worked with consultants (including Julia Newton from the fatigue CRESTA but also 1 or 2 others from interested, relevant departments) and occupational therapists and psychologists. It was a really interesting mix of people, all with an interest in illnesses causing chronic fatigue, including, but not limited to, ME/CFS. It was really nice to sit there amongst it all, aware of the fact that all the people in the room were there because they cared about, and wanted to improve the experiences of, patients with illnesses like mine.

Since then we've met as health champions on a number of occasions, and have worked with Prof Julia Newton on several of those occasions to gain a better idea of what the CRESTA is all about. We have been working out how we can complement what is already a fantastic clinic for patients with chronic illnesses causing debilitating fatigue.

We believe in the clinic and what it offers so intently that we are wanting to get the word out about the clinic to all those that might benefit from the multi-disciplinary approach that it offers, so that's one thing we're intending to work on.

We are also currently looking at setting up some activities to get patients of the clinic together in a more social setting for mutual support. We are also thinking about getting groups together to share knowledge and information relevant to our conditions. We really hope people will embrace what we are trying to do, and hope people will benefit. 

We have a lot of ideas of our own, but would welcome ideas from others! The CRESTA clinics are already unique, but hopefully as health champions we can help to add yet another dimension to what the fatigue CRESTA offers its patients.

1 comment:

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