CRESTA Fatigue Clinic Health Champs survey - what would you like to see?

 

Hi all

below 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 future

many many thanks for your input

https://www.surveymonkey.co.uk/r/6BL2RX5

Kirsty

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  30th Jan 2016, 11am at the cafe at the Laing art gallery, Newcastle - lovely to see everyone
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.  

Sat 25 June 2016 -11.00 - tba

Sat 27 Aug 2016 - 11.00 - tba

Sat 29 Oct 2016 - 11.00- tba

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

Hi, the above have been cancelled whilst we are having a a rethink re socials, as not many people turn up so we are questioning if they are useful/ what people want . We would really like to see what you would like and have launched survey to capture your ideas - Link below

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 future

many many thanks for your input

https://www.surveymonkey.co.uk/r/6BL2RX5

Kirsty

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 

https://www.facebook.com/CRESTA-Fatigue-Clinic-Health-Champions-1555500658041903/?fref=ts- 

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!

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

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

By ROGER DOBSON FOR THE MAIL ON SUNDAY

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.

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..

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.

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.