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CES in the spotlight at first-of-its-kind event

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Healthcare professionals and patients will unite next week at a first-of-its-kind event to help raise awareness of the life-changing impact of Cauda Equina Syndrome (CES). 

The inaugural CES Festival and Conference will run from Monday to Friday next week, culminating in International CES Awareness Day on October 1. 

The free virtual event will bring together key figures from across the UK to help widen discussion around the topic, which is still so little-known that many people suffer in silence from a lack of diagnosis or appropriate support. 

The syndrome is a rare and severe type of spinal stenosis where the nerves in the lower back suddenly become severely compressed, and failure to diagnose and receive appropriate treatment can lead to greater risk of long-term consequences including incontinence or paralysis. 

Sexual problems are also commonly experienced by people with Cauda Equina, exacerbating the mental and physical effects of the condition, and which can leave people facing life-changing consequences in a number of ways. 

Through the CES Festival and Conference, organiser Claire Thornber – founder of the Cauda Equina Champions Charity, the UK’s biggest voice on the condition – has brought together a full spectrum of insight into CES, to enable healthcare professionals and the public alike to gain a better understanding of CES and its impact. 

Leading professionals from the healthcare world will feature, alongside people with personal experience of CES, and attendees will be given an opportunity to revisit a landmark BBC report from 2019 which, for the first time, laid bare the reality of CES on the UK healthcare system. 

The programme for each day will be shared with pre-registered attendees on the morning, with the webinar content remaining available on the website from then on, with the intention of continuing to grow the resources available and create a hub of advice and inspiration for people affected by CES. 

“We want this to be an opportunity to share best practice, a lot of people are trying really hard to change the situation around CES and the lack of awareness, and mindset is shifting, but there is a lot to do to change the fact it is still too unknown,” says Claire. 

“There is no national pathway yet, although some good work is being done in a couple of places, so we are moving closer. Official statistics say there are 1,000 cases of CES each year, but we think it is probably three times that, as it’s still not properly recognised. There are as many cases of CES as there are meningitis each year, but why is there no public health campaign?

“The impact of CES can be life-changing. We are seeing people being discharged after their operation with no support until their three-month follow-up, they’re cast into the community. This can cause relationship problems, sexual problems, problems in returning to work. These things change lives. 

“We want the website to be a growing resource for healthcare professionals and patients and to help change the perception of CES.”

To register for the CES Festival and Conference, visit here 

Spinal

Rediscovering sex and intimacy after CES

A first-of-its-kind psychosexual therapy service is supporting people living with Cauda Equina Syndrome and their partners

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People living with Cauda Equina Syndrome (CES) are being supported in rediscovering their sex and intimate lives through the launch of a first-of-its-kind therapy service. 

Sexual dysfunction is a common effect of CES, along with loss of sensation and issues around fertility, but a lack of specialist provision makes it something that is rarely addressed. 

Now, to help address issues around sexual and intimate problems, a psychosexual therapy service has been created by Michelle Donald and Sue Lennon, working in conjunction with the Cauda Equina Champions Charity.

Despite its life-changing impact, CES as a condition is not widely known about even, meaning many people suffer in silence through a lack of diagnosis or appropriate support. 

The syndrome is a rare and severe type of spinal stenosis where the nerves in the lower back suddenly become severely compressed, and failure to diagnose and receive appropriate treatment can lead to greater risk of long-term consequences including incontinence or paralysis.  

It can have a devastating impact on people’s intimate lives through the ramifications of saddle numbness, pain, bladder and bowel issues and body image, which can impact significantly on personal relationships.

Through the creation of the psychosexual therapy service, Michelle and Sue, both expert professionals in their field, will support people in overcoming psychological barriers to help rebuild satisfying intimate lives and help them come to terms with their ‘new self’. 

The charity will help fund this support for CES patients and their partner to explore new ways of enjoying sex and intimacy after life-changing injury. 

Claire Thornber, founder of the Cauda Equina Champions Charity, is a passionate campaigner for greater support and awareness around CES, and recognises the huge impact sexual and intimacy problems can have on the lives of couples. 

“As a former CES patient, I am all too aware of the impact of sexual dysfunction arising from a Cauda Equina injury,” she tells NR Times. 

“On a daily basis, through our charity we hear of the struggles people face adjusting to life after CES. There is a huge human element to this, it’s not just about the surgery and medical impact. Many people resign themselves to withdrawing from any kind of intimacy and often relationships are put under huge pressure. 

“We want to support couples and families to move forward together and empower the person living with CES to address this. For some people after CES, sex can be the last thing they want to think about and it is put on the back burner, but we are here for when they are ready.

“We are delighted to be able to offer this much-needed, crucial service, we’ve had some really good feedback from clinicians about what we have created. 

“Also, we’re thrilled to be supported by Michelle and Sue, who bring with them years of experience in this area, helping people lead happy and fulfilling lives once again.”

“What a thrill it is for me to work with people who are truly curious about sexual satisfaction after CES,” says Sue.   

“I really can’t wait to get started, joining Champion’s Charity in making a real difference and finding very happy outcomes.”

Michelle adds: “Having a low level spinal injury in my late 20s, I became aware of the many issues surrounding how an SCI affects a person’s relationships and sensuality.

“Provisions in the NHS are sadly very few. I am delighted to be able to offer this service to enable people to start a different intimate journey.”

Referrals can be made to the charity at info@championscharity.org.uk or via the helpline on 03335 777113

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Spinal

Trials of ONWARD spinal cord therapy deliver early boost

One patient paralysed for years is now moving his arms and toes following ARC Therapy

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Trials of revolutionary ONWARD spinal cord therapy which is set to transform the lives of people living with paralysis are delivering strong early results, with reports of participants regaining movement in their arms and toes. 

ARC Therapy is being trialled in sites around the world, including in the NHS Greater Glasgow and Clyde (NHSGGC) in a first-of-its-kind study in the UK. 

The treatment, developed by ONWARD, uses tiny non-invasive electric pulses to improve connections across the damaged area of the spinal cord, with the ambition of delivering life-changing outcomes through restoring limb function for people who are tetraplegic or paralysed from the neck down. 

The trials, part of the global Up-LIFT study run by ONWARD, are the latest step in the development of the ARC EX and ARC IM technologies, the first of which could be commercially available as early as 2023. 

Dr Mariel Purcell, consultant in spinal injuries at NHSGGC who is leading the study at the Spinal Injuries Unit at the Queen Elizabeth University Hospital, said: “This is a really exciting research project involving a piece of kit that is completely non-invasive.

“We’ve had a lot of interest – from patients and other spinal injuries clinics around the UK, and further afield. We’ve even been contacted by a patient from the south of England, who is prepared to relocate here just to take part in the study.”

Initial results are promising, says Dr Purcell, and are helping to show that the introduction of ARC Therapy earlier in a person’s rehabilitation could deliver significant benefits. 

“One patient who we have treated with the device was injured playing rugby at the age of 16 and had been completely paralysed from the neck down since,” she said. 

“After the treatment, he had no problems with bladder or temperature control, he could move his big toes, and he can use his arms enough to operate a mobile phone.”

The first half of the study involves eight weeks of intensive therapy to optimise upper limb movement and function. During the second phase of the study, participants will receive non-invasive stimulation of the spinal cord in addition to traditional upper limb therapy for a further eight weeks.

The ARC therapy device works by improving the connections between healthy areas by placing electrodes on the skin that activate the nerves below the level of the injury, making the body more receptive to hand and arm movements.

The aim of the treatment is to help people regain some use of their arms and hands, but it may also improve bladder and bowel function, along with blood pressure control and temperature regulation.

NHSGGC said the participants in the study have received all the rehabilitation and treatment currently available and are living as independently as they can. 

The study in Glasgow is recruiting participants until end of the year and it is hoped the final results of the study will be available later next year.

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Spinal

World-leading hospital secures funding for SCI research

Craig Hospital becomes one of only two centres in the United States to be continuously funded as an SCIMS since 1974

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A world-renowned neurorehabilitation and research hospital for people with brain and spinal cord injury (SCI) has secured further funding to serve as a Spinal Cord Injury Model Systems (SCIMS) centre. 

Craig Hospital becomes one of only two specialist centres in the United States to be continuously funded as an SCIMS since 1974 and enables it to advance its pioneering work further still. 

The five-year, $2.4million grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) provides funding for Craig to conduct research that assesses the long-term outcomes of people who have sustained SCI. 

Craig’s findings contribute to the National SCI Model Systems database, which has been in existence since 1973, while also proposing and participating in collaborative research studies focused on improving outcomes for individuals who have sustained SCI.

Throughout the course of the grant cycle, Craig has identified a number of objectives, including investigating the efficacy of various approaches to improve upper extremity function and trunk stability among individuals after cervical SCI and the evaluation of oral health status among the US SCI population.

The latest funding announcement is further endorsement of the world-leading work being done at Craig, which has been a pioneer in neurorehabilitation since 1956 and delivers stellar outcomes and a renewed view on what is possible in life to patients at its 93-bed facility in Colorado. 

“We are extremely proud to have received this competitive grant from the NIDILRR yet again, as it designates Craig as both a clinical and a research centre of excellence,” said Candy Tefertiller, executive director of research and evaluation at Craig Hospital. 

“Our team recognises the benefit of this grant every day, as we strive to translate our research findings to clinical care within our hospital, with the goal of improving the lives of our patients who have sustained SCI while also contributing knowledge to the greater field of SCI rehabilitation.”

There are 14 SCI Model Systems throughout the US, making up the largest network of research centres devoted to SCI in the world. 

These centres collaborate on research and share knowledge and data that helps inform clinical treatment and rehabilitation. 

As part of the designation, centres must have a comprehensive clinical service delivery program for patients who have sustained SCI in addition to the research component.

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