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.
Thank you so very much for sharing such great blog! I am definitely going to bookmark this. Urgent Care
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