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A ticking timebomb in stroke care

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Sian Mara, 35, was enjoying a holiday in Cuba with her husband Jason and her 12-year-old daughter when it happened. Sian, from Chard in Somerset, recalls: “It was just a normal day, I’d been swimming and playing volleyball in the pool with my daughter, went upstairs to get ready for dinner, had a shower and then I had a sudden headache. I felt as though I was going to pass out, so I sat on the floor so I didn’t fall and then I just couldn’t get back up again.’’

Fortunately there was a doctor on site at the hotel who was summoned by Jason. Sian was taken to hospital where she had CT scans and she was told she had had a stroke. Completely paralysed down her left side, she spent the next two and half weeks in Cuba until she was cleared to fly home.

“It was completely out of the blue,’’ she says. “I’m only 35 and was probably in the best health I’ve ever been in, going to the gym six days a week. I’d never had any health issues and no family history of medical problems. The last time I’d been to the GP before that was two years before for a urine infection.’’

At Musgrove Hospital back in the UK, they did a series of tests and found that Sian’s stroke had been caused by a hole in the heart or patent foramen ovale (PFO). This could cause another stroke.

Every newborn baby has a hole in their heart between the two upper chambers, but this normally closes shortly after birth. When this doesn’t happen, there can be an increased risk of strokes.

There is a procedure – called a PFO closure – to close a hole in the heart but the NHS in England decided to stop paying for this operation in 2016. Now, victims face a lifetime of medication or having the operation done privately, which can cost up to £20,000. Initially, Sian was relieved that Musgrove had found the underlying reason for her stroke.

She recalls: “Because I was worried they weren’t going to be able to find a cause. I thought that if you know what has caused it you can prevent it happening again.’

“I was shocked when I was told there was a procedure they can do to close the hole, a day-surgery procedure not even requiring a general anaesthetic, but, unfortunately, it’s not funded.

“In my naivety, I thought maybe I can have it done privately but, to my horror, I was told that it costs £18,000.

“Obviously I was born with this PFO and have been walking around with it for 35 years but now I know it’s there, it’s like I’m walking around with a timebomb, waiting for it to go off again.’’

Sian, who, ironically, is the deputy practice manager in a GP’s surgery, is now on medication to prevent blood clots. She is waiting for an appointment with a cardiologist in Bristol to see whether she can be classed as an exceptional case to qualify for individual funding.

Strokes, which occur when the blood supply to the brain is cut off, are the third most common cause of premature death and a leading cause of disability in the UK.

It has been estimated that about 57,000 people in England suffered their first stroke in 2016. While the rate of first-time strokes in the population has fallen by 8% since 2007 and the percentage of first-time strokes suffered by over-70s dropped from 64% to 59%, during the same period, the rate for those aged 40 to 59 increased from 15.3% to 20%.

There appear to be no figures on the number of strokes caused by PFO, but they are clearly far from rare. Sian herself knows another man under the age of 50 in Chard, population 13,000, who has had a PFO-related stroke. A brief search of the internet reveals scores of cases, many of which have been reported in the press, of relatively young people who have suffered and have then been turned down forcorrective surgery on the NHS.

Lydia Payne, from near Hereford, was a fit and active 34-year-old. One Sunday in 2016, she and her partner Philip had walked their dog and had their roast dinner, then she was sitting down making a phone call when her life changed.

The left side of her face froze, she couldn’t speak and her left side was paralysed. Fortunately her partner Philip recognised the stroke symptoms and rushed her to hospital where she was diagnosed as having had a stroke and was given emergency treatment. She had no history of high blood pressure or high cholesterol but tests revealed a large PFO.

Recovery for Lydia has been long and hard. It has taken her two years to fully regain her speech, but her walking is still not yet back to normal.
Lydia says: “I saw a heart specialist who basically told me it’s not a case of if, it’s a case of when. She said, `You have the PFO, I cannot tell you the plaque isn’t going to build again and fire off another clot. You need the surgery but, I’m really sorry, as it stands, NHS England won’t fund this surgery’.’’

Like Sian, she found that to have the operation done privately would cost around £20,000. Apart from the obvious concerns about her health and physical disabilities, the stroke has brought a whole raft of difficulties in its wake.

“My personality changed overnight. I went from being a confident outgoing person to somebody who just too anxious to leave her own house,’’ she says.

Previously she had had her own body-piercing business but she has had to close that and rely on welfare.

“Unfortunately all of the services are geared to deal with older people. So, for someone of my age, they didn’t know where to send me for physio. We went private in the end because it was going to  be 18 months before I could get a neurology appointment, but we paid £350 and I got to see him within four days.’’

She was put on blood thinners and statins but the medication brings its own problems.

“I’ve had to go on meds which make me ill. The clopidogrel [a blood thinner] is horrible and the bruises are insane and my joints hurt. “It’s horrible medication and I’m going to be on medication for life.’’

She had a hysterectomy at an earlier age, but cannot take HRT because of the blood clot risk, which puts her at greater risk of certain cancers. Lydia has two boys, aged 15 and 11. Her eldest son is registered blind.

“Obviously he’s really dependent on me, but I haven’t been well enough, so he has to spend more time with his dad and that’s really frustrating.’’

According to an NHS report on patent foramen ovale closures prepared by the Newcastle and York External Assessment Centre, carrying out the procedure in NHS England is not cost-effective.

It states: “The lifetime costs to the NHS of a patient receiving a PFOC procedure was estimated at £12,956. For patients managed by medical therapy, the total cost per patient was estimated at £7,596.’’

That’s a saving of £5,360. But, as Sian points out: “If I was to have another stroke, it’s going to cost the NHS a hell of a lot more than £5,000. Prevention is better than cure.’’

Different Strokes is an organisation which supports younger stroke survivors through active peer support and independent recovery. Lauren McMillan from the organisation says: “Unfortunately stories such as Lydia’s and Sian’s are not rare.

“Since funding for PFO closures was cut by the NHS in 2016 we are increasingly hearing from families who are living the same nightmare. “In 2017 new data was presented at the European Stroke Organisation conference in Prague, following a study which demonstrated that closing the hole can reduce the chance of another stroke by nearly 80%.

“At Different Strokes we feel it is absolutely vital that this funding is urgently re-instated. “The long-term benefits of this operation are undeniable and allow survivors and their families to move forward without living in constant fear of another stroke.”

Sian Mara echoes those sentiments: “My recovery has been so hard and the exercises have been so difficult and the thought that I’ve done all that for nothing, just to have another stroke is terrible. It’s the last thing I think about when I go to bed and the first thing I think about in the morning. It’s so frightening to live with.

“This is not just a headache, this is people’s lives. It has such a profound effect, not just on the person, but on their family as well.’’

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Insight

Now is the time to embrace better ways of working

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By Merryn Dowson, assistant psychologist and part of the team behind rehab goal-setting platform Goal Manager

A stitch in time saves nine. Rome wasn’t built in a day. The best things take time.

We are all too aware that some of the most important parts of our lives have been crafted, carved and developed over months and years. Consider your education, for example: you may well have been to primary school, secondary school and then sixth form college. Perhaps you went on to do an undergraduate degree.

You may even have taken another leap and completed a Master’s degree or a Doctorate. This took years. You learned, revised, sat exams, sat resits, applied for places, got results, got rejected, got accepted, and made it here.

One thing is certain: compared to all of this expertise, someone who completed a two-hour online course on the same topic does not come close. We know that putting time and effort into something gives us better results than if we tried a quick approach.

We do not always lead by this example though. Despite the knowledge that great results are only achieved through hard work and perseverance, sometimes we decide just not to bother. Often, a room in our home might look cluttered, worn down and unloved and it could be made to look incredible.

The walls could be painted, clutter cleared, carpet cleaned, furniture patched up, curtains updated, but it is so much effort. We see the effort it would take and keep living with it. It does the job. It’s fine.

We heard this a lot when we began to develop our software. Goal Manager was designed from within a clinical neuropsychology service with young people with acquired brain injury, and we recognised how goal setting was becoming an intimidating concept within our service and our colleagues across the field.

To combat this, we developed an online goal-setting platform which streamlines the key processes of goal setting into one system and allows members of multi- disciplinary teams (MDTs) to collaborate on goal data remotely.

Crucially, it was designed to fill a hole. The more daunting goal setting became, the more it was shied away from, and the guidelines for goal setting that had emerged from the literature were falling to the wayside.

While we designed our platform to save time on completing all of the gold-standard processes of goal setting compared to doing them manually, we found that people had often not been completing them at all. It was all too complicated.

As a result, we recognise that adopting a software solution like Goal Manager can come with its own problems to solve. It requires relearning a lot of
what we know about a concept like goal setting, understanding properly how these key processes work and how they can be applied clinically to benefit clients.

It is only then that you can start to think of ways to make it more efficient. To help with this, our users are offered bespoke demonstrations, guided MDTs through meetings to help with the clinical application of the data, and training on assessments and goal attainment.

This takes time. Our users are often throwing out their previous guide and writing a new one. When surveyed, however, every single one who responded said that it was worth it.

This brings us back to where we started: the best things take time; Rome was not built in a day; a stitch in time saves nine. By taking time to develop an understanding of goal setting and being able to apply it to a software solution, users experience all of the benefits of best-practice goal setting outlined in the literature both for their clients and for their teams.

Clients are motivated, rehabilitation is meaningful, important areas to address are highlighted, MDTs are focussed, clinical practice is evidenced – the list continues. None of this would have been possible without the initial investment of time.

While simple enough to read, this is no doubt overwhelming to apply to your service or practice and, with this in mind, there are some key points to remember. The most significant is that there is no better time than now.

The world is slowly opening its eyes, sitting up in bed and having a good stretch after the darkness of the Covid-19 lockdown. It is not yet certain if we are going back to snooze or if we are leaping out of bed afresh.

What we do know, however, is that we are heading into a brand new day. Even for those of us who continued in practice throughout the pandemic, services have been slightly paused in one way or another, whether that be refraining from home visits or having fewer people in the office.

We are all very aware that we are heading into the “new normal” rather than our old ways. Use this time to bring new and innovative ways of working into your practice. You might completely change your filing system, consider how you approach your waiting lists, or change how you approach MDT meetings.

Whatever you have been wanting to do for you and your service for so long, now is that time.

Perhaps you decide that you are going to welcome change but not all at once. That works too! For users of Goal Manager, we often suggest that starting with one or two clients might feel more manageable than a whole caseload.

This can help get to grips with the new concepts and ways of working without feeling like everything is completely disrupted. This applies elsewhere too. If you are wary of integrating a system into your whole service, start with one corner of it, evaluate, take what you have learned and then look to apply it more widely.

Finally, remember that all time taken to improve and grow impacts more than just what you set out to do. When people lose weight, they rarely conclude
by saying they just lost weight: they often enthuse about how they feel more energised or move easier or feel more positive or experience less anxiety.

This applies to any time you invest in developing your clinical practice or your service.

While time spent learning how to use Goal Manager and establishing it within a caseload is designed to improve goal setting, that investment also leads to improved assessment processes, more effective meetings, improved digital literacy, increased patient involvement and so much more.

The potential is enormous. To motivate you to start the process, look at what you want to achieve and how that might trigger other improvements.

While the world is still trying to drag its head off the pillow to open up the lockdown curtains, look to invest in addressing those needs you have always been aware of but never felt like you could justify the time.

Walk around your “house” and look into each room: is this the best it can be or could I give it a lick of paint?

Is now the time to bring meaningful solutions into my practice? Maybe grab a tester pot and try a new shade on the walls. Sign up for a free trial. Plan to grow and improve. Start building Rome.

To invest in improving your goal setting, visit www.goalmanager.co.uk to register for a live demonstration, sign up for a free trial or request a bespoke tour through the platform and its features.

 

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Insight

Researchers unlock key prognostic tool for brain injured patients

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In 1974, leading neuroscientist Graham Teasdale co-created the Glasgow Coma Scale (GCS) while at the Institute of Neurological Sciences in Glasgow. This scale has since been used to assess coma and impaired consciousness in patients who have had a brain injury.

The scale is used to describe variations in a patient’s eye, motor, and verbal responses. Each feature is assigned numerical scores depending on the quality of the response, and total scores range from three, which is a deep coma, to 15, which is full consciousness.

The GCS is used in clinics all around the world by physicians, nurses, and emergency medical technicians; and is also applied more widely in other, more complex systems that are used in assessing acute brain damage.

However, all three features of the GCS can’t always be determined in patients. Most commonly, the verbal response can’t be tested, as it’s not possible to determine this response in patients with severe brain injury who are intubated.

When the verbal score cannot be measured, the GCS can still be used in routine assessment and communication about a patient’s condition.

“The GCS should be reported in its component parts, so there is still useful information in the motor and eye components, and the verbal score can simply be reported as not testable,” Paul Brenan, senior clinical lecturer in neurosurgery at the University of Edinburgh says.

“The missing verbal score is problematic, though ,when determining the GCS sum score (eyes + verbal + motor). The sum score is used in clinical prognostic tools, such as the GCS -pupils score, so until now, missing verbal data has prevented clinicians from using these tools.”

But now, Teasdale and Brennan, along with Gordon Murray at the University of Edinburgh, have created a tool to use to assess impaired consciousness when the verbal component of the GCS is missing.

The researchers first examined a database of GCS assessments, and found that the verbal component of GCS was missing in 12,000 patients with traumatic brain injury (TBI), which made up 11 per cent of GCS assessments. These verbal scores were most often missing in patients with low eye and motor scores.

Using GCS data recorded in a database of 54,000 patients, the researchers calculated the distribution of verbal scores for each combination of eye score and motor score. They then combined GCS eye and motor scores into EM scores, and determined the distribution of verbal scores for each EM score. Based on this, they identified a verbal score that clinicians could impute for every EM score.

“Without the verbal component of the GCS, the GCS sum score (eyes + Verbal + motor) cannot be determined, so we developed this imputation tool to enable clinicians to benefit from these prognostic tools for decision making in patients with the most severe brain injuries, where the verbal score is not testable,”  Brennan says.

To test these imputed verbal scores, the researchers substituted imputed verbal scores for actual verbal scores within the framework of prognostic charts, which the authors had previously developed.

These charts take into account the total GCS score, pupil response, age of the patient, and findings of abnormalities. The charts provide predictions about patient outcomes, and are designed to help clinicians make decisions and communicate across teams.

The authors outline in their paper, ‘A practical method for dealing with missing Glasgow Coma Scale verbal component scores,’ published in the Journal of Neurosurgery, that they found that the information gleaned from imputing verbal scores according to each EM score was similar to the variations between precise eye and motor scores, and from full information on verbal, eye, and motor responses.

Imputing verbal scores doesn’t add new information, but allows clinicians to use prediction and prognostic models by filling in verbal data needed for those systems to work.

“We have developed several tools related to the GCS that enhance its ease of use and clinical application, including the GCS Aid, the GCS-pupils score and the GCS pupils Age CT prognostic charts,” Brennan tells NR Times.

“These have been designed to address specific needs. For example, the GCS Aid was developed to support training in assessment of the GCS and to enhance reproducibility of assessment. The GCS pupils score and prognostic charts provide a simple but robust prognostic tool that can be used in the clinic.”

“Prognostic scores are helpful for clinicians to get a reliable prediction of patient outcome, to inform clinical decision-making and to support communication with a patient’s family.

“We know from previous research that clinicians can tend to predict overly pessimistic outcomes for patients, particularly those with severe brain injuries, so these prediction models are designed to prevent that. With our imputation tool, the sum score can be determined and prognostic models used in real-time in the clinic.”

The researchers believe that being able to add verbal scores will help clinicians quickly determine the severity of acute brain injury and estimate patient outcomes.

“We know from the enquires we get and from the number of downloads of materials from our website, that these are very popular and are having a positive impact on clinical care around the world.

“We are confident this missing verbal score imputation tool will be just as positively received,” Brennan says.

 

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Insight

Update:concussion in sport

A run through the latest developments in concussion in sport research and protocols.

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A study published in the May 27 in the medical journal of the American Academy of Neurology, looked at a biomarker called neurofilament light chain, a nerve protein that can be detected in the blood when nerve cells are injured or die.

Levels of the protein in the blood were measured and it was found that those with three or more concussions had an average blood levels of neurofilament light 33 per cent higher than those who had never had a concussion.

“The main finding in the study is that people with multiple concussions have more of these proteins in their blood, even years after the last injury,” said study author Kimbra L. Kenney, M.D of the National Intrepid Center of Excellence.

“Additionally, these proteins may help predict who will experience more severe symptoms such as PTSD and depression. That’s exciting because we may be able to intervene earlier to help lessen the overall effects of concussions over time.”

Following on from our article on the game changing tests into concussion in children it has been found that concussions sustained by high school athletes continues to increase.

Injury data collected from 100 high schools for sports including football, volleyball and wrestling found that, between the academic years 2015 and 2017, the average amount of concussions annually increased 1.012-fold compared to the previous four academic years.

Approximately 300,000 teens suffer concussions or mild traumatic brain injuries each year while playing high school sports.

Wellington Hsu, M.D, professor of orthopedics at Northwestern University’s Feinberg School of Medicine said: “It’s understandable to think that with increased awareness among practitioners who diagnose concussions, the incidence would naturally rise; however because we’ve studied and reported on concussions for a number of years now, I feel that enough time has passed and I would have expected to see the numbers start to level out.

“What we found was that the overall average proportion of concussions reported annually in all sports increased significantly, as did the overall rate of concussions.”

The data also revealed that in gender-matched sports, girls seemingly sustain concussions at a higher rate than boys.

The effects of concussion in young people continues to be a key concern, with links between concussion and football, specifically when heading the ball leading to some big changes when it comes to training guidelines.

Coaches have been advised to update their rules connected to heading the ball in training, with no heading at all in the foundation phase for primary school children and a “graduated approach” to introduce heading training at under-12 to under-16 level. This guidance is expected to be issued across the continent later this year.

These new guidelines were recommended following a FIELD study, joint-funded by the English FA and the Professional Footballers’ Association, published in October last year, finding that professional footballers were three-and-a-half times more likely to die of a neurodegenerative disease than members of the general population of the same age.

The study did not identify a cause for this increased risk, but repeated heading of a ball and other head injuries have been identified as possible factors.

Dr Carol Routledge, director of research at Alzheimer’s Research UK, said: “Limiting unnecessary heading in children’s football is a practical step that minimises possible risks, ensuring that football remains as safe as possible in all forms.

“As such, measures to reduce exposure to unnecessary head impacts and risk of head injury in sport are a logical step. I would, however, like to see these proposals introduced as mandatory, rather than voluntary as present, and a similar approach to reduce heading burden adopted in the wider game of football, not just in youth football.”

A similar stance, that also includes restrictions during matches, has been in place in the US since 2015 after a number of coaches and parents took legal action against the US Soccer Federation.

There is clearly a need to educate coaches and athletes about the concussion recovery process while equipping physicians with quick diagnostic tools.

A partnership between Neurotechnology and brain health analytics player SyncThink and concussion education technology specialist TeachAids aims to offer the latest concussion education combined with mobile, objective measurement technology.

EYE-SYNC, which allows a clinician to use analysis to decipher between brain systems to determine whether a patient may be performing poorly or impaired, will create a brain health education and evaluation system based on the implementation of CrashCourse, an interactive educational module that teaches athletes, parents and coaches about concussions.

This implementation will be available to all SyncThink partners which include top athletic organisations and clinical partners providing medical care and education for over 10,000 high school and college athletes.

This implementation could make tracking those who receive concussion education easier while complying with sport governing bodies educational requirements.

SyncThink founder and medical advisor to TeachAids, Jamshid Ghajar said: “Using the SyncThink platform to feature the CrashCourse educational technology for athletes and coaches is brilliant.

“Now clinicians can use the Eye-Sync tests and metrics alongside CrashCourse’s latest evidence-based information on concussion.”

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