Even under the bright lights of A+E, and the fixed stare of the experienced doctor, stroke can go undetected.
It hides behind the mask of other problems like migraine, vertigo or drugs and alcohol.
In young people, who are generally considered low risk, this deceit can be devastating.
Death or life-changing disabilities can occur – simply because signs were missed by professionals, or patients and the people around them.
Traditionally strokes were considered a disease of the retired. But NHS figures show that the number of men aged 40 to 54 hospitalised after stroke hit 6,221 last year – 46 per cent higher than in 2000. For women in that age group there was a 30 per cent rise to 4,604.
The average age of stroke is 74 for men and 80 for women, with both figures gradually reducing in recent years, despite the UK’s ageing population.
Most strokes do occur over the age of 65, but poor lifestyle choices are putting younger generations increasingly at risk.
The situation is exacerbated by the challenges faced in spotting symptoms by both young people themselves, and clinicians.
The push to raise public awareness centres around the FAST acronym (Face, Arms, Speech and Time to call 999). The Act FAST campaign reportedly contributed to a 54 per cent rise in stroke related 999 calls between 2009 and 2013, leading to around 4,500 fewer people being le disabled by stroke.
This saved the taxpayer over £332.9m in the period, against the campaign’s cost of £12.5m, Public Health England said.
Slightly dubiously, it is also claimed that FAST increased the proportion of the UK population that knows what a stroke is by 20 per cent to 65 per cent. It is unclear how this figure was reached with any accuracy, but the campaign’s overriding success is unquestionable.
Would a similar campaign specifically targeting young people be able to deliver such results in the under 40s? Certainly, finding the millions of pounds needed to push it out across the spectrum of social media sites and TV platforms would be a struggle.
Expert Liz Iveson believes a better use of resources would be to promote stroke recognition in young people among doctors in GP surgeries and on A+E wards.
The stroke consultant, who works at York NHS Teaching Hospital and Woodlands Neurological Rehabilitation Centre, says: “Often, because of the age of the patient, doctors don’t think about stroke diagnosis until they have ruled everything else out. They may not be showing the classic symptoms, while conditions far more common in young people than stroke, like migraine or vertigo, are higher up the check-list.
“Stroke tends to be the thing that’s thought of last by both doctors and younger patients. As a result, we see delayed presentation and diagnosis.”
Stress and alcoholism are also red herrings that might detract from a correct stroke diagnosis in young people.
Strokes which are ischaemic (due to a blocked blood vessel rather than bleeding on the brain) and occur towards the back of the brain are particularly hard to diagnose in young people.
Early diagnosis of posterior circulation ischaemic strokes may prevent disability and save lives; but the FAST test is less useful in detecting them, while symptoms like vision problems and vertigo can easily be confused with other less serious problems.
The vast majority (85 per cent) of strokes are ischaemic. Given the life-changing damage they can cause to the brain, treatment must be carried out within a few hours if serious consequences are to be avoided.
Misdiagnosis or delayed presentation puts young people’s lives at risk or sets them up for a lifetime of severe disability.
One treatment, thrombolysis, uses drugs to break down and disperse the clot. It is only licenced for use up to four and a half hours from the onset of stroke symptoms.
Thrombectomy – a procedure which mechanically pulls the blood clot out of the brain – must also take place in the early hours after a stroke.
Every minute a stroke is untreated, 1.9 million neurons are lost. When thrombolysis is given within three hours of stroke, one in 10 patients will go on to live independently.
The speed at which patients are diagnosed and possibly taken to theatre or given drugs can be hugely significant to the outcome of a stroke.
Iveson believes the emergence of the national ‘stroke pathway’ is helping to counter the threat of late detection or misdiagnosis of stroke among young people.
Over the last decade, the Royal College of Physicians (RCP) has driven the national rollout of a clear pathway for stroke patients within healthcare trusts. Its regularly-updated National Clinical Guideline for Stroke states that: “Commissioning organisations should ensure their commissioning portfolio encompasses the whole stroke pathway, from prevention through acute care, early rehabilitation and initiation of secondary prevention on to palliation, later rehabilitation in the community and long-term support.”
Before this guidance was first introduced in 2008, stroke care was inconsistent across the UK, with patients being treated in a range of settings rather than on dedicated stroke wards.
Iveson says: “We’re definitely getting better at diagnosing stroke. Because of the pathway, the stroke team has a greater presence in A+E. If doctors are unsure about symptoms, they can ask the stroke nurse to have a look at a patient. This pathway is pretty consistent across the country, and is supported by the ongoing audit of stroke services.
“Through the pathway, we also give feedback when stroke diagnosis has been missed, which also ensures lessons are learned.”
Improving diagnosis will only go so far in curbing the number of young lives damaged or devastated by stroke, however.
A more challenging task is snuffing out the stroke risk factors seemingly on the rise in younger people. “Obesity and high blood pressure are being diagnosed at a younger and younger age and therefore arteries are aging earlier than they otherwise would have. The longer you have these risk factors, the more likely you are to have a stroke.”
Being overweight increases the risk of high blood pressure, heart disease and type 2 diabetes; all of which are stroke risk factors. Overall, obesity increases a person’s risk of stroke by 64 per cent, says The Stroke Association.
Meanwhile, British Heart Foundation (BHF) figures show that five million people in England are unaware they have high blood pressure, and therefore could be at risk of stroke.
The western world’s obesity epidemic shows no signs of slowing, and young people are just as exposed as older generations. Around a third of UK children are reportedly overweight when they leave primary school.
More alarmingly, signs of obesity-related heart damage are now being detected in toddlers.
A study of more than 400 children in Romania found changes in the structure of the heart in obese infants – including those below the age of one.
The results, presented at the European Society of Cardiology congress in Barcelona, found obese children had 30 per cent thicker heart muscle compared to those of a healthy weight.
Stroke in children is usually linked to genetics rather than other risk factors. But such reports, and the fact that overweight children are statistically more likely to be obese as adults, offer little encouragement in the push to reduce stroke in young people.
Stress is another rising risk factor. “Stress alone increases stroke risk,” says Iveson. “Partly this is because it can lead to changes in lifestyle that increase other risk factors like high blood pressure and obesity. For example, if you’re working long hours, you might do less exercise, smoke more and eat junk food on the go. There is also a more direct link between stress and stroke, related to inflammatory markers.”
This link was only proven earlier this year, by researchers at Harvard Medical School and Massachusetts General Hospital.
The part of the brain linked to stress, the amygdala, controls the production of white blood cells by bone marrow to fight infection and repair damage.
Its function is to prepare the body for a harmful experience, such as being attacked. Scientists discovered, however, that chronic stress can cause this process to go into overdrive.
White blood cells are over-produced and can form plaques in the arteries, heightening the risk of cardiovascular diseases such as stroke.
Although definitive evidence that stress levels in young people are on the rise is lacking, numerous studies suggest a general surge in work-related strife.
Longer working hours, tighter budgets that encourage bosses to ‘sweat their assets’ and the culture of emails on the go, all contribute.
The uncertainty that comes with zero hours’ employment and working in the so-called ‘gig economy’ is also linked with increased stress in younger workers.
Drug use is also a stroke risk factor which may be more prevalent in the under-40s. Iveson says: “I once saw a 24-year-old who came to hospital following a stroke which was put down to his heavy cocaine use that had effectively aged his blood vessels prematurely.”
A 2012 study found that 20 per cent of stroke patients aged 45 or under had used illegal drugs. More recently, research has discovered links between methamphetamine – or ‘speed’, ‘ice’ or ‘meth’ – and increased stroke risk.
Clearly raising awareness of the many risk factors of stroke in young people, and continuing to improve diagnosis, are mammoth tasks requiring years of e ort and focus.
Evidence suggests that post-stroke treatment must also improve, if stroke patients are indeed getting younger.
The 2016 edition of the National Clinical Guideline for Stroke reports that some younger adults feel that general stroke services – used mostly by older people – do not meet their needs.
It reports: “Younger adults are more likely to have an unusual cause for their stroke, rehabilitation may require specific attention to work and bringing up children, and social needs and expectations may be different.
“Thus, although all stroke services should respond to the particular needs of each individual regardless of age or other factors, it is appropriate to draw attention to this group of younger people with stroke.”
It recommends that acute stroke services should “recognise and manage the particular physical, psychological and social needs of younger people with stroke”. It also says they must liaise with regional neuro-rehab services specialising in young adult care.
Encouragingly, the latest results of the Sentinel Stroke National Audit Programme (SSNAP), which measures stroke care standards and is informed by the National Clinical Guideline, shows general signs of improvement.
In the year to March 2017, 36 teams achieved an overall ‘A’ score, indicating world class stroke service. This was up from 25 in 2016. Improvements were noted in areas such as rapid scanning, thrombolysis provision, and access to a stroke units.
It also cited an “unacceptable variation” in standards across the country, however.
A major concern for Iveson is the scarcity of neuropsychology services for younger stroke patients within the NHS.
“Psychology is completely underfunded
at the moment. A lot of younger stroke patients do well in terms of physical recovery but it’s very di cult to address challenges like memory problems or other cognitive issues. They would really bene t from detailed neuropsychology that could perhaps prove they can return to work or at least help them to function better.
“But they just can’t get it on the NHS and have to apply for funding for exceptional treatment to access it through private providers.”
In fact, getting access to any neuro-rehab services in the long term is needlessly tough for younger stroke survivors, Iveson says.
“In younger patients, the rest of the brain tends to be in good condition and can take over some of the functions that were controlled in the part that has died, through neuroplasticity.
“With the right rehabilitation, young stroke patients can do surprisingly well. I’ve had younger patients that have had very severe strokes resulting in a lot of brain damage, that have gone on to walk and recover speech.
“Rehabilitation is available for a reasonable time in the NHS but it’s really hard to get it for the prolonged period that many young people could bene t from.
“Unfortunately, long term support isn’t commissioned well at all. Yet younger people who’ve had a stroke may have many years ahead of them and require long-term support to help them in society, at work and in relationships.”
Having worked in the stroke field for over a decade, Iveson has witnessed great strides in the overall standard of care available to stroke survivors. She also sees significant room for improvement.
“Stroke care has improved massively in the last 10 years but, until recently, resources have largely been concentrated on the beginning part of the patient journey, getting people into hospital as quickly as possible.
“What hasn’t been well funded is what happens after hospital when patients go back out into the community. That’s something that needs attention.”
‘I lived in pain for so long – finally I’ve found a way to manage it’
Having been left with serious injuries in a cycling accident, Ian recovered from the physical impact but continued to suffer chronic pain. Here, he discusses how he has learnt to deal with it and get his life back on track.
“About two years ago, I was involved in quite a serious accident while I was out on my bike. I flew over handlebars and hit my head on the ground, leaving me unconscious.
I was left with an array of injuries, including decompression of two of the disks in my spine, which needed an operation to resolve. But from being in the ambulance after my accident – the earliest point I can remember after coming off my bike – I was in enormous pain.
While over time I have managed to recover my body functions, having struggled in the aftermath of the accident, I continued to experience pain. Most days were pretty tough. I was on a lot of medication, which contributed to my fatigue.
I was sleeping a lot, spending a lot of time in bed, I was very tired all of the time and in a lot of discomfort.
I’d always been very, very active, and enjoyed cycling, motorcycling, tennis, walks with friends and family, I was a very outdoors person – but that all came to a halt. The most I could manage was a short walk, and even then I was very fatigued.
I didn’t understand what was happening to me or why, it was just continuous, unrelenting pain.
By this point I had returned to work and the demands of my job. I was just about managing to keep on top of my commitments, but only just.
With a wife and two young daughters, my life had typically been very busy and very active, but now I was unable to do as much together, or spend as much time as I’d like with them.
This went on for over a year, and was, without doubt, the toughest time of my life.
My case manager helped me to find a solution which has enabled me to rediscover my life, through a programme called RESTORE, pioneered by RTW Plus.
Through RESTORE, an online learning programme which supports you to understand and manage pain, and take back control of your body and life – which enables access to a consultant and support from health coaches 24/7 – I have been educated in what I can do to help myself.
All of a sudden, from not knowing what had happened to me and feeling helpless, I was supported in understanding what was going on.
Prior to that, what had happened wasn’t described to me that well, and I had so much medication that everything was often quite blurry. The concept of chronic pain wasn’t something that was addressed once my physical injuries had healed.
Through this programme, I was educated as to what had happened to me. As a keen cyclist, I’d had many accidents in the past, but all were short-term tissue damage, which were very painful at the time, but that pain went away. I now was able to understand why this time was different, and to be realistic in my expectations.
I’ve never been good at pacing myself, but now I was able to stop and think what it was I was trying to do, what I wanted to do, and how to manage and achieve that.
Crucially, by understanding my pain, I became less frustrated and less dependent on medication, meaning my life would not always have to be a cloudy blur. I became more confident as a result.
From believing this was how my life was going to be, not very pleasant and full of pain, now I had hope and confidence it was going to get better. There was light at the end of the tunnel.
Understanding more about pain got me really engaged, and I started reading about it and looking for examples. After work, I’d be picking up books and learning more. Having the knowledge about what is happening to you, and how to help yourself, is so powerful.
Having been able to come to terms with my pain during the 16-week course – it’s usually eight weeks, but was tailored around my busy work schedule – I could then get my life back on track, backed by the confidence I had rediscovered.
I’m now cycling every other day, which I haven’t done since my accident, and am getting my life back to what it used to be. I’m doing things that matter and spending time with my family, which is what it’s all about.
I realise I am on an ongoing journey with my pain, and that hasn’t finished and will continue for some time to come, but I’m in a good place now – a place I could never have imagined being a few months ago.”
‘I lost my sense of smell through brain injury – I’m grateful COVID has shone a light on its impact’
Having been in a near-fatal car accident, Sally Smith has recovered physically, but a brain injury resulted in the permanent loss of smell. Here, she discusses how the once-tricky subject has now become much more accessible through its association with COVID-19.
I used to love the smell of Christmas. I honestly think that was my favourite part. The mulled wine, the spicy fragrances, the turkey dinner cooking – that really made Christmas for me.
However, for the past five years, I’ve had to live without this, after losing my sense of smell as a result of my brain injury. As 80 per cent of the flavour of food comes from its smell, my sense of taste has also been seriously impacted.
It has been a pretty life-changing experience, one which I could never have appreciated the impact of. Christmas certainly isn’t the same, but neither is any other day.
The smells of summer – the cut grass, the flowers, the barbecues – all lost. The overpowering sensation of walking through the perfume departments of stores is something I can only remember. Even the smell of burning to alert me to the fact I’ve left the dinner in the oven too long is gone forever. And the taste of my favourite foods and wine is also tainted, with a flavour so faint often I wonder what is the point.
While people are sympathetic, they don’t understand. But how could they? I’m not sure I could have prior to my own experience.
Often, their sympathies extend to something like ‘Well at least you’ve still got your hearing/sight’ as if it’s some competition between the senses. Or ‘At least you’re still alive,’ which is quite dramatic, but nevertheless true.
I did come close to losing my life in a car accident five years ago. As a back seat passenger, I bore the brunt of a lorry crashing into the back of the vehicle I was in, and suffered a range of injuries, my brain injury being the one which still affects me now and always will.
I was undoubtedly lucky, apparently it was miraculous I survived, and I do feel so fortunate to have few other lasting affects apart from my loss of smell.
The topic was one that there were few opportunities to talk about, as devastating as it was personally for me, given the fact that so few people had experienced it for themselves.
Until a few months ago, that is, and the fact that loss of smell become a symptom of COVID-19. Suddenly, it stopped being a subject that was just plain weird, and one that everyone was talking about. People began to understand.
My next door neighbour had COVID-19 and lost her sense of smell for a short period. ‘It was only at that point I realised how horrendous it is,’ she said to me after her recovery. ‘Who knew I’d actually miss the smell of my daughter’s dirty nappy?’
And while that’s perhaps not something you’d ever think you’d miss, when you find yourself in the situation of not being able to smell anything at all, however divine or revolting, you do feel a great sense of loss. Of wishing to smell anything at all.
Thankfully, for most people with COVID-19, this is a temporary state, but I have heard there could be more than 100,000 of those recovering from this terrible virus whose loss of smell has extended beyond four weeks. I can only hope this is not a permanent state for them, although undoubtedly there is much more about COVID-19 and its lasting impact we have yet to discover.
For me, my situation is permanent, and living in a world with no fragrance is the reality. Yes, things could be much worse, and I realise that, but for me, it has been life-changing.
Inspiring a brighter future for residents
A neuro-rehab provider which opened its first facility in Worcester shortly before the first lockdown has succeeded against the odds – and now has plans to expand in 2021, as NR Times reports.
Inspire Neurocare provides support for people with a variety of neurological conditions, offering rehabilitation, respite and palliative care.
The firm opened its first specialist care centre in Worcester in February 2020, and this will be followed by further facilities in Basingstoke and Southampton in 2021/22. Inspire prides itself on a novel model of care that has “no limitations on the possibility of recovery,” all led by director of clinical excellence Michelle Kudhail.
A key element of the centre’s approach is the team’s commitment to understanding that every patient, and the circumstances that led them there, is different.
Whether this means enabling people to leave high dependency hospital units and develop their independence in a modern, home-from-home environment, or providing long-term support or end-of-life care, the service is designed to work around the needs of each patient.
Michelle’s background means she is the ideal person to head up the Inspire team, having worked as a neuro physiotherapist in the NHS until 2010, before moving into the private sector.
She takes an holistic approach to patient care, which has led to the creation of a team of life skills
facilitators and therapists at the provider, who develop their care around the needs of everyone.
“The life skills facilitators support and assist the residents to do as much as they can for themselves,” she explains.
“As the name suggests, their role is more than a carer; it is to facilitate the residents in all aspects of their care, whether that’s helping them get their breakfast, choosing what they are going to wear, or taking their medication.
“Their skills are broad because we want them to be involved in all aspects of the residents’ care; and because we want to provide what they need at the time that they need it.
“Roles such as this also enable us to evaluate the outcome of any action. If a resident has been given pain medication, a facilitator can assess whether it’s been effective, rather than a nurse giving the medication and then not seeing them until the next round.
“We also know from a therapy perspective that some patients don’t respond well to having therapy at a fixed time on a particular day; they simply might not feel like doing it. Our facilitators mean we can best provide interventions for the resident when they want them.”
Alongside this role, the facility also employs a wellbeing and lifestyle coach, focussing on the health and emotional needs of both residents and their relatives, particularly during a time when COVID has caused a lot of uncertainty.
Michelle says: “We wanted somebody that had relevant experience in working with residents, particularly with neurological conditions but also with a well-rounded experience so that they would not just focus on one aspect.
“The idea is to have somebody who can offer support in all areas, whether it be psychological, emotional or physical.”
Staff are overseen by experienced rehabilitation consultant Dr Damon Hoad, who shares his clinical oversight with the interdisciplinary team and supports patients on their journeys.
The rest of the clinical team have a wealth of experience within neuro services in and around the region.
The design of the Worcester facility draws on Michelle’s years of experience, and she had the opportunity to use her skills to help develop the purpose-built home.
She says: “We’ve had a lot of involvement all the way through from knocking down the pub that was there, to seeing it grow. Having the opportunity to be involved from the ground up was fantastic.
“Within the build itself we try to consider the needs of younger people, and so the inside of the home is very much a contemporary design and a lot of research has gone into its development to ensure it has the correct, up to date, equipment.”
Adding to the sense of autonomy staff are keen to foster, is the independent living flat, which staff are able to support via environmental controls.
With soundproofed rooms, residents can enjoy listening to music or watching films without disturbing others.
In common with all care facilities, the impact of COVID means that a lot of thought has had to go into the long-term plans for the property. The recently-built visitation suite – known as the ‘family and friends lounge’ – allows visitors to meet their loved ones in a safe and COVID-compliant way.
The suite includes separate access for visitors from outside, and features a large transparent Perspex screen separating each side of the suite, while an intercom enables contact-free communication.
As well as creating an infection barrier, the screen also assists when it comes to residents who may struggle to understand that they are unable to hug their relatives, while still allowing them to communicate and see each other up close.
After each visit, the room is cleaned and decontaminated in preparation for the next visit.
As Michelle explains, human contact is essential for emotional wellbeing, adding: “We’ve tried to create an environment that is as safe as possible, because we know how important visits are to the residents but, more particularly, to their relatives.
“Supporting the residents through this time is vital. We have residents that are used to going out and doing things in the community and we have had to adjust by being creative in the ways in which they can still access things that they enjoy and still communicate with their families.”
And while the pandemic has certainly delivered some challenges, Michelle and the Inspire team have been able to look at some positive outcomes.
She explains: “One of the positives for us is that it gave the team and the residents the opportunity to really get to know each other.
“We could also develop the life skills facilitator role to its truest form, because everybody was very much working together dealing with the crisis, supporting each other and supporting the residents.
“It was a testing time but it actually it brought the team together, bearing in mind the facility opened literally as everything was going into lockdown.”
The creation of the COVID-secure visitation suite is just one example of the creativity with which all at Inspire approach care, Michelle says.
By looking to build collaborations with other organisations, Michelle also hopes to share her hard-won knowledge, potentially becoming involved in research and training in the future.
Despite the upheaval of its first few months, the Inspire team has already achieved some successful patient outcomes.
One such success story is the case of Adrian, who came to the centre for specialist neuro-rehab following a car accident in which he suffered a severe brain injury. In the months that followed, Adrian’s journey enabled him to walk out of the service and return home to his wife and children.
(See Adrian’s story below – and read more here).
While the coming months may bring more challenges, as COVID lingers and vaccinations are rolled out, the Inspire team seemingly has the skills, approach and dedication to rise to whatever the future holds.
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