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.