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.’’
Update:concussion in sport
A run through the latest developments in concussion in sport research and protocols.
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.”
Stepping up the fight against alcohol-related brain injury
Alcohol-related brain injury (ARBI) is becoming more widely recognised, but specific rehab services for the condition are surprisingly rare.
With few dedicated units for patients with ARBI, many patients in need of specialist care instead find themselves in a hospital or even an elderly care home.
ARBI is characterised by prolonged cognitive impairment and changes in the brain due to chronic alcohol consumption.
The average age of diagnosis in men is 55, and only 45 for women – following at least five years of excessive alcohol consumption, of around 50 units per week in men and 35 for women.
ARBI is not a degenerative condition, with up to 75 per cent of patients recovering to some degree with the correct support; and the first three months following diagnosis are recognised as key in a person’s recovery. Access to appropriate provision, therefore, is even more crucial at this time.
In February, UK-wide charity Leonard Cheshire opened a residential unit in Northern Ireland to help some of the many patients in need in the country. It is the first facility of its kind on the island of Ireland.
The 14-bed unit, near Belfast, opened inconveniently – after years of planning – just as the COVID-19 crisis was emerging.
Its work goes on, however, with the centre taking patients from across the country, though initially from the capital and surrounding areas.
The residential centre aims to support residents over a two to three-year period, although that can be shorter for some patients. It helps them to live independently, by building the life skills and confidence to do so.
Naomi Brown, clinical lead at the centre, joined Leonard Cheshire late last year to oversee the opening of the facility, following an extensive career in brain injury work and in being part of multidisciplinary teams.
She says: “The background here in Northern Ireland is that the acquired brain injury (ABI) service is really well structured and established but for ARBI, often the person wouldn’t meet the criteria for addiction services, but their needs would not be such that they needed to be admitted to hospital, or even fulfil the criteria for ABI services, so they would fall through the cracks.
“The provision they receive would often come from the care sector, but to end up in a care home at what could be a very young age is not appropriate either.
“There is a real lack of options. Their care managers recognise they aren’t in the appropriate setting for them, but through a lack of alternatives, it is very difficult.
“A lot of symptoms are very similar to those under the influence of alcohol, difficulty with balance and memory for example, which can make ARBI difficult to diagnose.
“Often it can be something like liver failure that gets them into hospital, but then it becomes obvious there are cognitive issues there too.
“Our centre only has 14 beds, which we don’t pretend is going to answer the scale of the problem, but the decision to restrict it to that number is that we don’t want quantity over quality. To try and accommodate huge numbers would risk the patient-centred approach that we are really proud of, so we wanted to keep it on a small scale.
“But there are 14 places here at any one time for people to get access to the specialist rehabilitation they need, so we are really pleased to be able to offer this.”
With the centre’s goal being the independent living of its patients, a resident-led rehab plan is created for each individual, based around their individual goals and aspirations.
It is delivered by Leonard Cheshire’s team of rehab assistants, supported by clinicians, occupational therapists, physiotherapists, speech and language therapists and neuropsychologists who come in to hold sessions with the residents, and overseen by Naomi.
“From the minute someone is admitted to us, we are already planning for their discharge, even though that may be a long time and a lot of work away.
“From the very start, it’s about the individual, it’s absolutely not a generic approach, even though the ultimate outcome for everyone may be the same. Most people who move in do want to live independently, so if that’s their goal and we will do all we can to help them achieve that, with a plan individualised for them.
“Some people will come to us and we realise they won’t be here very long as they do very well very quickly, but for others, they are going to be with us for two or three years.
“Some people arrive and love it here and say they don’t want to leave, which is a great reflection on the work we do and the centre we’ve created, but the ambition is that the point will come where they realise they don’t need us anymore.
“Through the work we do and our interventions, we can make very good progress. We’ve had some people here already who have been in quite an acute state but the progress they make brings joy into my heart.”
One such patient is David* who, despite only being with the centre for a matter of weeks, has made significant progress in his recovery.
Prior to moving to Leonard Cheshire, he lived in a nursing home for two years.
Before his arrival, Naomi remembers he had low mood, minimal spontaneous conversation and spent long periods of time in his bed sleeping.
He had no clear weekly routine and lacked any scheduled therapeutic or recreational activities.
Naomi says: “David initially required a significant amount of support to initiate activities, engage with others or even leave his room. He has slowly adjusted to the active therapeutic programme in the unit and his mood has improved significantly.
“His mobility and exercise tolerance has greatly increased, he participates in group activities, is now more spontaneous in conversation and has developed facial expressions. David has been able to self-identify rehabilitation goals and discovered a new love for playing the drums and guitar.
“He is in the very early stages of his rehabilitation but having spent three months in the ARBI unit, the change is his quality of life is already dramatic.
“He engages in an individual, weekly timetable which includes activities of daily living, physical, cognitive and social activities, and is reportedly very happy in his current placement. Once the COVID-19 restrictions are lifted, we very much hope to begin reintegrating David to the local community and making future plans for his discharge.”
David’s experience is one which the unit is keen to replicate, by engaging patients from the earliest stages of their arrival at Leonard Cheshire in building a new and healthier daily routine.
“We are always keen to introduce routine, as that is so important in the longer-term. Where some people have maybe traditionally watched TV all night then get up into the afternoon, we try to create a new routine with lots of support services available in the morning. A healthy routine is what we want them to have when they go back home,” says Naomi.
“We encourage people to do things for themselves – to get up, make yourself breakfast, maybe do some gardening or help with the cleaning, all things which promote the ability to do things independently.
“If they put the washer on, they’ll need to go back to it when it’s finished. We have rehab assistants on-hand to support them, but we do actively encourage independence.”
Everyone has an individual timetable for the week based on their own interests, combined with their clinical requirements, which centres on promoting reintegration into the community.
“It’s very individualised, so if someone wants to do an online course or learn how to cook for themselves, or learn a musical instrument, we’ll focus on that. We have a fantastic team here who will turn their hand to anything for the benefit of our residents,” says Naomi.
“As well as activities in the centre, we do a lot in the community, or rather we did before COVID-19, but that will resume when it’s safe to do so. We did sports activities, yoga classes, bowling, it’s not just your classic physio. We want people to be engaged and comfortable with the world outside.
“We will always ensure residents have support once they leave us, and are setting that up long before they go.
“If there was someone who was with us who wasn’t from Belfast, we would use resources we knew were transferable to where they lived, so they didn’t leave us and not know how to access support.
“We build up these links with community services in the relevant discharge areas, so ideally the person will already be confident at being independent and will have the added assurance of knowing they continue to be supported.”
The Leonard Cheshire centre’s launch came amid changes to Northern Ireland’s legislative backdrop with the implementation of the Mental Capacity Act (NI) 2016. This has new deprivation of liberty regulations, a significant new introduction for the country and its approach to capacity and consent.
Naomi says: “When planning for the opening of a new centre, a global pandemic wasn’t on the radar, and for it also to coincide with the new mental capacity legislation meant it was a really busy time for us in the early stages, the COVID-19 aspect of which we could not have foreseen.
“The pandemic did present challenges for our residents, many have a certain level of confusion so it’s difficult for them to always remember that they can’t be close to someone else, they have to regularly wash their hands. There is a lot of prompting which leads to a certain amount of frustration. While they are watching these things on TV about how COVID is affecting the world, it’s hard to relate that to everyday life.”
New referrals continue to arrive during the pandemic, from both hospital discharge and moving from a care home environment, although happily the Leonard Cheshire unit has remained COVID-19 free.
“We were keen to admit new residents and take referrals from hospitals and care homes, subject to extra measures being in place to protect ourselves and our residents.
“We wanted to continue to support hospitals and free up beds, but also to offer the appropriate care to people whose specific needs through their ARBI diagnosis meant they would be better in our centre than a hospital environment or care home.
“This has certainly been a challenging period in which to start our ARBI unit, but we have come through it well together so far and we look forward to continuing to develop ourselves as we come out of the pandemic and go into the future.”
*Name changed for anonymity.
Neurobehavioural rehab in aggression management after TBI
Changes in personality following TBIs are often more problematic than neurocognitive, functional deficits or even physical disabilities. Dr Grzegorz Grzegorzak, consultant neuropsychiatrist at St Peter’s Hospital, South Wales, explains why taking a neurobehavioural approach to treating TBI can be highly effective.
Personality changes are sometimes referred to as neurobehavioural disability (ND), especially when associated with social difficulties.
The concept of ND involves impairments of numerous aspects of functioning including the abilities to self- monitor and self-regulate, to control frustration, anger and aggression, to tolerate delay in gratification, and to self-motivate.
These impairments can lead to a sense of being overwhelmed when facing situations requiring control and management of internal impulses or coping with social situations or tasks.
Impulsivity, disinhibition and aggression all have significant potential to interfere with rehabilitation efforts, jeopardize recovery and become a major obstacle to successful functioning in social roles.
Research estimates the prevalence of aggression in survivors of TBI as being as high as 33.7 per cent.
Addressing aggression as soon as it arises is critical to the individual’s recovery.
Sometimes aggressive behaviour is so intense and frequent that its management takes priority over all other aspects of care and rehabilitation.
Neurobehavioural rehabilitation (NR) was introduced in the late 1970‘s as an attempt to improve functional abilities of TBI patients.
NR stems from recognising that people who survive TBI can still learn new skills to self-regulate and to modify their behaviour.
The basis of NR is embedded in learning theory and thus the success of NR is reliant on the patient’s ability to make use of new information and experiences.
Therefore, NR is only suitable for the post-acute phase of recovery from TBI, and in fact is intended as a medium to long term rehabilitation programme.
NR interventions are composed of comprehensive and multidisciplinary efforts to create a user-friendly, supportive and encouraging social environment which facilitates therapeutic interactions and activities.
Specific goals and detailed routines are constructed for each patient individually, based on structured collection of data informed by behavioural analysis.
The process of designing and implementing the interventions puts emphasis on personal autonomy.
Clinical formulation is preferred over medical diagnosis. The attitude of the MDT should always be positive, embracing a strong belief in the patient’s ability to achieve their goals, improve and recover.
Carefully managed feedback and positive reinforcement are an essential part of NR.
Consistent interactions with every member of the team are of utmost importance, given that neurobehavioural intervention should not be limited to scheduled activities but in fact incorporated in every interaction.
Over the last forty years the model has been implemented by many neurorehabilitation services worldwide.
Several case studies describing recovery pathways through NR paint a very positive picture, and our own experience at St Peter’s of adopting a neurobehavioural approach has demonstrated it can produce real and measurable outcomes for both our patients andtheir families.
Case Study: Mehmet
On admission to St Peter’s Hospital, Mehmet presented with extreme challenging behaviours including serious assaults on staff, destruction of environment, verbal abuse and shouting.
Mehmet has frontal lobe dysfunction as a result of a head injury he sustained. For the previous 18 months he had been in a general hospital.
At St Peter’s a bespoke positive behaviour support plan and activity plan were developed with Mehmet’s input and reflecting his cultural needs which, under the supervision of his MDT, promoted positive changes to his social interactions, routines and activities.
Over nine months Mehmet’s challenging behaviours reduced significantly and he now enjoys a wide range of activities including regular community visits and has strengthened his relationship with his family.
Dr Grzegorz Grzegorzak is one of the consultant neuropsychiatrists at St Peter’s Hospital a specialist 39-bed Neuropsychiatric facility in Newport, South Wales run by the Ludlow Street Healthcare Group. www.saintpetershospital.co.uk
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