Hi allbelow is a link to our survey. There are now 108 of us fatiguers, so we would be really interested in your views, and what you would like us Health Champs to organise - within reason - no requests for all expense trips to the Bahamas please :-)If you could spare 5 mins of your time to give us some feedback, that will help steer what we arrange in futuremany many thanks for your inputKirsty
CRESTA Fatigue Clinic Health Champions
Saturday 9 July 2016
CRESTA Fatigue Clinic Health Champs survey - what would you like to see?
Wednesday 9 March 2016
Dates for your diary 2016
Dates for your diary!
The lovely Angela has arranged some get-togethers and all fatigue CRESTA patients and staff are very, very welcome- we'd love to see you there! All the details are below:
Any illness can leave you feeling a bit isolated. We are here to help you take those first steps back to a social life, or add to your existing one. Come and meet some very friendly Champions/fellow patients and carers at one (or more!) of these get togethers:
Saturday 9th Apr 2016, 11am at the cafe at the Laing art gallery, Newcastle
We have had a thought and wondered about doing our socials on the last saturday of the month every other month, so its easy to remember and allow people to plan ahead.
This is a trial so happy to hear your thoughts/ any feedback. Locations for later socials to be announced, but will be central Newcastle somewhere, all suggestions welcome
There are now 108 of us fatiguers, so we would be really interested in your views, and what you would like us Health Champs to organise - within reason - no requests for all expense trips to the Bahamas please :-)If you could spare 5 mins of your time to give us some feedback, that will help steer what we arrange in futuremany many thanks for your inputKirsty
Housekeeping: Minimum of 4 people for an event, or the event will be cancelled.
All events are intended to be friendly, relaxed and supportive, however, they are not intended as a support group. If it is a support group you are interested in, please contact us on the email address or Facebook below, and we will do our best to get the relevant info to you.
All events are open to patients, fatigue CRESTA staff and clinicians. Please bare in mind that these events are not hospital appointments, and individual health concerns should not be raised at these events.
Finally...enjoy, and we look forward to meeting you!!
If you would like to come along to any of the above, would like more information, or would like to put forward your own ideas, please contact us at:
Crestachamps@gmail.com
or on our Facebook page
While it is really useful if people can give us an idea whether they are able to come or not, so that we can check each meet-up is viable, get contact details for if we need to cancel, and establish numbers to book tables etc if necessary, we have chronic illnesses ourselves so are fully aware that people may need to back out last minute due to illness! We may need to do the same though, which is why we'd really appreciate if you could email us at to let us know that you intend to come, so that we can let you know if we have to cancel. Thanks!
Thursday 25 February 2016
Hello from Dave
This is Daves story who is one of our Health champs. Published on the ME support web pages. Good to share our stories so we don't feel alone and also share our coping strategies
http://www.mesupport.co.uk/index.php?page=my-journey-through-me
http://www.mesupport.co.uk/index.php?page=my-journey-through-me
Friday 13 November 2015
More research going on behind the scenes at CRESTA, with patient experience..
Major new NHS medical alliance aims to put North East
at centre of pioneering research
Newcastle
University teams up with hospital trusts to attract leading medical research
into diseases and improve outcomes for patients
NHS Hospital Chief Executive Sir Leonard Fenwick |
A new alliance has been formed
to deliver “trailblazing health services” and make the North East a centre of
pioneering medical research.
The partnerships aims to
harness world-class expertise, ensuring patients in the region benefit sooner
from new treatments and earlier diagnoses.
Bringing together Newcastle Hospitals and Northumberland, Tyne and Wear
NHS Foundation Trusts and Newcastle University, the newly-formed ‘Newcastle Academic
Health Partners’ hopes to deliver pioneering healthcare through scientific
research, education and patient care.
The new alliance will be
focusing on leading the way in scientific advances to tackle common diseases
such as dementia. It will also specialise in improving understanding and
treatment of cancer, diseases that affect the brain and those affecting
children.
Sir Leonard Fenwick, chief
executive for the Newcastle Hospitals, said: “Newcastle has a long-standing,
international reputation for delivering trailblazing health services. This
wouldn’t be possible without the leading edge research carried out in
partnership with Newcastle University, and we very much see this formal
partnership, alongside new partners Northumberland, Tyne and Wear NHS
Foundation Trust, as a springboard to cultivate even more pioneering research
to benefit the people of the North East and beyond.”
John Lawlor, chief executive
of Northumberland, Tyne and Wear NHS Foundation Trust, said: “Our service users
have already benefited from research carried out in partnership with Newcastle
University and we are excited about the opportunities provided by this formal
partnership to deliver world-leading research to benefit people around the
world.”
The partners have developed a
five year plan that includes recruiting and training the next generation of
researchers and providing national leadership in healthcare education. This
collaborative approach is helping attract some of the brightest researchers and
practitioners to Newcastle and the North East region.
Professor Chris Day, pro vice
chancellor in the Faculty of Medical Sciences at Newcastle University, said:
“This partnership is at the forefront of translating scientific advances made
at Newcastle University into direct benefits for patients.
“This strategy has already led
to major advances in healthcare within the region, as well as nationally and
internationally”.
Patients with Chronic Fatigue
Syndrome (CFS) are already benefitting from the medical expertise provided by
newly formed alliance.
Professor Julia Newton,
clinical professor of Ageing and Medicine at Newcastle University, who also
works within Newcastle upon Tyne Hospitals NHS Foundation Trust, has led a team
of experts who have found an abnormality of a protein which could lead to the
development of new drugs and treatments.
Researchers found that
patients with the condition have a defect in a molecule associated with the
production of a protein known as AMP kinase (AMPK) – the first time such a
discovery has been made which will provide greater understanding of CFS.
Professor Newton said: “At the
moment we don’t know what causes CFS and, as a result, there are no
biological-based treatments that can be given to patients.
“There are a great number
suffering significant problems with CFS and our work is heading towards looking
for medications that we can use to improve patients’ symptoms and hopefully
find a cure.”
Kirsty Harwood who suffers from CFS |
CFS is a common condition that
affects approximately 600,000 people in the UK. It causes crippling fatigue,
often with severe muscle pain that does not go away, and can create long-term
disability.
Professor Newton added: “A
real strength in the North East is that the university and hospital trusts work
closely together, pulling on each other’s academic and clinical strengths so
that we can be sure our work is of the very highest quality to help patients.”
One patient who knows
first-hand the importance of the CFS research being carried out is Kirsty
Harwood who was diagnosed with the condition a year ago, after suffering
symptoms for a number of months.
The mother-of-two, from High
Heaton, Newcastle, has welcomed the research breakthrough brought about by
Newcastle Academic Health Partners.
Kirsty, 46, an Environment
Agency worker, said: “When you’re diagnosed with the condition you feel
isolated as there is no treatment or cure and it turns your life upside down.
“I went from being a fully independent
working mum, to becoming dependent on my partner to look after me and my two
daughters in the space of two weeks. We don’t know what, and may never know
what, caused it just that we now have to deal with it.
“The research that’s going on
in the North East is exciting and offers real hope to those suffering with the
illness that a treatment may become available.
“It would be amazing for
people, and their families, if medication could be established to treat the
debilitating symptoms that we have to deal with each day.”
CRESTA in the news, a copy of the report in the Daily mail... we know its much more than feeling tired but all awareness raising is good, and the main text covers what many of us experience
Hope at last if you feel TATT (that's Tired All The
Time): Unique NHS service launched to combat long-term fatigue
•
New research shows one
Briton in eight is affected by long-term fatigue
•
Symptoms manifested by
conditions including arthritis and sleep apnoea
•
A new fatigue clinic
in Newcastle will treat patients and carry out research
PUBLISHED: 22:03, 31
October 2015 | UPDATED: 00:28, 1 November 2015
The first NHS service for patients who complain of
being tired all the time – or TATT – has been launched. The move comes as new
research shows that one Briton in eight is affected by long-term fatigue, which
is separate from the condition chronic fatigue syndrome (CFS), also known as ME
or myalgic encephalopathy.
The symptoms often begin in a person’s 30s, according
to new research, and are manifested in a range of conditions from rheumatoid
arthritis to sleep apnoea.
In some cases, tiny changes in the autonomic nervous
system, leading to a drop in blood supplies getting to the brain, heart and
muscles, may be responsible, according to experts at the fatigue clinic which
is part of the Clinics for Research and Service in Themed Assessments (CRESTA)
in Newcastle.
Fatigue is an umbrella term for a range of problems,
including tiredness, reduced energy levels, muscle weakness, memory problems,
anxiety, dizziness, and palpitations. The symptoms that patients have are not
helped by sleep or rest.
Although fatigue is commonly associated with CFS/ME,
which is believed by many experts to be a neurological condition similar to MS
or Parkinson’s and affects about 250,000 people in the UK, work at the
Newcastle clinic and other centres shows that it is far more common as a
symptom of other conditions, and that in some cases, there may be no
identifiable cause.
Up to 70 per cent of patients with rheumatological
diseases suffer with fatigue, and it has also been linked to lupus, Sjögren’s
syndrome, chronic infections, thyroid and liver conditions and restless leg
syndrome.
The scale of the problem is shown in a new study in
the journal Sleep And Biological Rhythms, based on a sample of 1,200 people.
It found that overall, 13.6 per cent of people,
including 20.9 per cent of women, had suffered with fatigue for at least one
month.
‘Fatigue, whether it is a side effect of a chronic
disease or chronic fatigue syndrome, is increasingly being recognised in the
UK,’ says Katie Hackett, Arthritis Research UK research fellow at Newcastle
University and a member of the CRESTA team.
The fatigue clinic is part of the Clinics for Research
and Service in Themed Assessments (CRESTA) in Newcastle (above)
Research suggests patients believe there is a lack of
medical interest in fatigue, and while there are many CFS services across the
NHS, there was, until now, no service aimed at those who suffer with other
causes of fatigue.’
Gill Turner, 51, from Newcastle, has been treated at
the clinic for fatigue associated with Sjögren’s syndrome, an auto-immune
disease characterised by excessively dry eyes and mouth, plus muscle and joint
pain and profound fatigue.
The clinic has
made a real difference to my life. They recognise that fatigue is a real
problem that needs to be treated
Gill Turner, who suffers from long-term fatigue
She says: ‘Fatigue became a big problem about two
years ago. I felt utterly exhausted all of the time, even after plenty of
sleep, and I had muscle ache and my body felt very floppy and immobile.
‘The problem is that all the treatments in the UK are
geared up to people with a clear diagnosis of chronic fatigue syndrome, which I
do not have.
‘I have had physiotherapy and occupational therapy as
well as having various specific tests. One of those tests finally showed a
genetic illness which helped to explain some of my symptoms.
‘I have also been given advice about managing my
problems and day-to-day coping with the fatigue. There is also a network of others
attending the clinic, called the CRESTA Champions, who are in all in similar
situations. The group is encouraging and reassuring.
‘The clinic has made a real difference to my life.
They recognise that fatigue is a real problem that needs to be treated.
‘The clinic has not only shown me that I am not alone
– but previous symptoms which had never been really acknowledged were finally
explained.’
It is hoped that a TATT service can eventually be
rolled out nationwide across the NHS.
Saturday 30 May 2015
Bright Ideas Awards
The Bright Ideas in Health Awards were held on Thursday 21st May at Hilton Newcastle Gateshead Hotel.
The awards are delivered by NHS Innovations North, on behalf of the Academic Health Science Network for the North East and Cumbria, in conjunction with the NIHR North East and North Cumbria Clinical Research Network.
The competition encourages, celebrates and rewards the outstanding innovations and excellence emerging from frontline NHS staff, CCG employees and SMEs in our region.
There were numerous awards categories, but, in the Service Improvement Category...the winner was..the CRESTA Fatigue Clinic!
The Newcastle CRESTA Clinic for fatigue associated with chronic illness (located at the old Newcastle General Hospital site) is modelled on a pain clinic, combining expertise from psychology, physiotherapy, OT, and sleep therapy, in each consultation, plus the support of health champions. The programme does not eliminate fatigue, but provides coping strategies.
The Innovators..
The awards are delivered by NHS Innovations North, on behalf of the Academic Health Science Network for the North East and Cumbria, in conjunction with the NIHR North East and North Cumbria Clinical Research Network.
The competition encourages, celebrates and rewards the outstanding innovations and excellence emerging from frontline NHS staff, CCG employees and SMEs in our region.
There were numerous awards categories, but, in the Service Improvement Category...the winner was..the CRESTA Fatigue Clinic!
The Newcastle CRESTA Clinic for fatigue associated with chronic illness (located at the old Newcastle General Hospital site) is modelled on a pain clinic, combining expertise from psychology, physiotherapy, OT, and sleep therapy, in each consultation, plus the support of health champions. The programme does not eliminate fatigue, but provides coping strategies.
The Innovators..
Prof Julia Newton
Sister Lynne Hogg
Vincent Deary
Kate Hackett
Victoria Strassheim
Dr Zoe M Gotts
Rebecca Lambson
Health Champions
Well Done to all connected with the CRESTA fatigue clinic.
Thursday 26 February 2015
An intro from Victoria
Hi, my name is Victoria and I am one of the health
champions.
I volunteered as I wanted to give something back to this
amazing clinic, as well as seeing if I can help others in similar situations to
myself. I have PBC and struggle with what has recently become severe pain, as
well as chronic fatigue. I have been diagnosed for 7 years, but have had
chronic fatigue since I was 14 so I don't really remember feeling well. (My
memory is truly awful! 😜)
I have been attending the CRESTA clinic since the start of
last year and have found it extremely beneficial. I have been seeing Kate
(Occupational Therapist) to support with my getting back to work, which has
been a huge help, support and a wealth of hints and tips that I have built into
my daily life, as well as her providing guidance to my GP and my employers to
support me in this process. Vicky (Physiotherapist) has been amazing. I have
attended 2 courses of her excercise class, this has enabled me to stregthen my
muscles, stop doing things which were bad for me, and also meet some great people
in the classes, share stories of how we are all coping, and support each other
in our progress upwaqrds, as well as blips which can often send you spiraling
(or is that just me?).
My condition has been getting worse over the last few years
and recently I have had to take a lot of time off work and change my role due
to only being able to work part time at the minute. Kate and Vicky's help with
this has been vital to my physical and mental well being in manging being off
sick from work, as well as attempting to return and working part time hours. I
am still slowly building this up to hopefully be back to full time soon.
Previously to attending CRESTA I was managing with a highly
supportive GP practice as well as seeing my consultants regularly, but I was
feeling as if I was getting no where in terms of managing my condition on a day
to day basis, and learning to accept the things that I am unable to do anymore.
The accepting part is the bit that I have been struggling the most with.
Although I have been struggling with this condition since my teens I have
always managed to do the things that I wanted to through pacing myself and
being a ridiculously planned person. These days this is not possible. I can't
go to dance classes anymore which is a huge thing for me as I have been dancing
since I was very young. I am aiming to be able to go swimming again by the end
of the year and Vicky is helping me towards that goal with the exercise classes
being the first step. I now complete the exercises myself at home and am
progressing slowly with my strength and stamina. The next step for me will be
to go to a pool and just walk in the water. Each new step is terrifying, and I
have to find a friend to go with me incase this totally wipes me out and I
can't even get out of the pool!! (The joys of the things you need to think
about when dealing with chronic fatigue!!)
In terms of accepting the limitations of what I can do now I
wrote this at the start of the year to guide and focus myself through any bad
times.
My philosophy is that Happiness is the only goal!
I have been struggling to stay positive these past few
months. I haven't been feeling "why me" just a bit sorry for myself
and sad for the things that I might not be able to have in the future. I worry
that I'll never meet a long term partner, never get married and have kids, and
even if I do, will I be able to look after my kids? Will I be able to give them
the lives that I want to? Taking them out, playing games, taking them to the
park and running around with them, or would I be the mum who looks on from the
sidelines, unable to join in? Would I be the mum in the wheelchair, or the one
who has to go for naps everyday? I do not want to be someone that my family has
to look after, so do I resign myself to being alone? To being a fantastic
auntie? Do I give up on finding a partner so that I don't have to drag someone
else into my life? Will I be able to work full time? Can I afford to look after
myself on part time work? Then how long will that last? And what do I do then?
I really don't know the answers to those questions yet. I
don't know if I'll ever find the answers to many of those questions as my
health is so unpredictable, but I do know that I want to believe that I will be
able to have everything that I want in my life, and if that looks a bit
different to what I would ideally like it to be, then so be it!
Life very rarely works out exactly how people want it to,
things happen, plans change, partners change and life sometimes just kind of
happens to you.
I have decided that I am going to direct my life as much as
I can. Looking after myself, eating well, exercising as much as I can, spending
time with family and friends, having holidays when I can, working as much as I
can, planning for the future as much as I can. The key phrase here is "as
much as I can" I am also going to try and just let life happen to me, to
see how things go, to try and relax about health downturns and celebrate the up
turns, to relish every good thing in my life and find the joy in the small
things every single day.
For the last year I have been keeping a "happy"
diary, I record all of the things that make me happy every day. This makes me
focus on the good things, remember the little things, and let's me look back
and realise how good my life is whenever I am feeling a little bit down. I am
going to find a lovely book and continue this habit into 2015 as it makes me
happy. Happiness is what I am striving for. Yes I would love my own house, nice
furniture, a matching set of towels, nice clothes and jewellery, a fancier car,
but I am fully aware that these things are not important. I am very lucky. I
have a condition which is not terminal, it is merely limiting. I have a large
circle of friends and family who I can ring up and cry at, or ask them to come
over with food for me, or take me out for lunch, or drive me to doctors
appointments.
I am loved, I am needed and wanted in people's lives. I am
important. And ultimately I am happy.
Since writing this at the start of the year I have met
someone who is starting to look like a permanent partner, who is understanding
and supportive of my condition and encourages me to look after myself. This is
amazing and scary at the same time but I am trying to embrace it. Oh... I also have a lovely set
of matching towels 😊
I am interested in getting some kind of support group set up
for people to discuss how they manage their lives, balancing all of the things
that we all have to fit in, looking after ourselves physically and mentally. I
am hoping to share best practice, hints and tip of things that work and truly
have a positive experience of supporting each other in navigating a balance in
life.
Subscribe to:
Posts (Atom)