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.’’
Taking time to look back – so the way ahead is clearer
Reflective practice within healthcare settings is widely talked about, but not always so easy to implement in the workplace. NR Times speaks to one neurological centre about how it benefits patients and staff there.
Reflective practice and discussion in healthcare settings is a professional requirement for nurses, as laid out by the Royal College of Nursing revalidation requirements as part of their continuous professional development.
It allows professionals to take time to pause and reflect, communicate and plan, which undoubtedly leads to better outcomes for patients and staff.
But in reality, reflective practice can often be left to the bottom of the pile, underneath many of the competing responsibilities facing staff who are often pressed for time.
It could be argued that this is also why reflective practice is so important – healthcare staff are facing so many pressures that it actually makes less sense to neglect the important work of individual and team reflection.
The Royal College of Nursing defines reflective practice as: A conscious effort to think about an activity or incident that allows us to consider what was positive or challenging and if appropriate
plan how it might be enhanced, improved or done differently in the future.
Staff at Elysium St Neots Neurological Centre in Cambridgeshire started doing regular, weekly reflective practices when its new hospital director, Fiona Box, came into the role a few months ago.
The nurses and healthcare assistants from a ward are invited into the meetings and in their absence the therapy staff monitor patients and provide activities.
“We thought it would be helpful for team members to give them the opportunity to think, learn, and to hear their opinions,” says charge nurse Jemima Vincent.
“If we have an incident with a patient, we discuss it in the session” she says.
Sessions are led by the management team, with added input from psychology teams on each ward.
They will talk through any strengths, weaknesses and opportunities, and work through an analysis to learn from the incident and create an action plan.
They talk about the worst-case scenario in relation to an individual situation and discuss how staff would manage that, so they’re better prepared in the event of it happening.
While they focus on one patient at a time, issues arise during conversations that bring in their wider experiences.
In an article* published in the Nursing Times in 2019, Andrea Sutcliffe, chief executive of the Nursing and Midwifery Council said: “In these challenging times for health and social care, it’s so important that collectively we do all we can to support our health and care professionals, and their employers, in devoting time to individual, reflective, personal and honest thinking.”
Fiona has received encouraging feedback from staff, who say the meetings help the staff feel much more involved in a patient’s care and allow the team to increase their knowledge and understanding resulting in a more consistent way of working.
“Healthcare workers often don’t fully understand patients’ diagnoses or why they’re reacting in a certain way, for example,” Jemima says.
“They know a patient presents with certain behaviours and may be taking medicine to help them cope but they’re not aware why the patient is showing signs of aggression and the best response to deescalate the situation,” she says.
“It’s a learning opportunity for staff, because reflective practice means that they can understand a patient’s diagnosis and why they behave how they do,” Jemima says.
“Reflective practice answers their ‘why’ questions, and gives them a more open mind.”
Jemima also benefits from the meetings; it’s a way for her to get to know staff better, especially when it comes to learning opportunities.
“I’m able to understand what level of support each member of the team requires, including training needs and if they need more knowledge on a specific topic.”
In her final year as a mental health nurse student on extended clinical placement at Elysium St. Neots, Jo took part in a reflective practice session.
She had just finished her dissertation, in which she looked at how settings can increase the opportunities and variety of reflective practices within hospital settings.
The aim of Jo’s session was to reflect on the recent deterioration in a patient’s mental state and the resulting impact on their well-being to ensure staff had a consistent approach to support the patient.
The hospital’s director Fiona asked the team about the patient’s care plan, diagnoses and needs and wishes.
Where staff were unsure of the answers to questions, Jo says Fiona gave them answers and encouraged the team to share their knowledge of the patient, problem solve and come up with an agreed plan to move forward with.
Jo found the session helpful and was impressed with how the healthcare assistants were so involved in the discussions about all aspects of the patient’s care, including the more clinical elements.
Healthcare assistants told her they found the session helpful too and that it made them feel like they had a better understanding of the patient’s changing mental state, behaviours and needs.
Jo says having the opportunity to reflect on practice is a crucial skill for all healthcare workers to help them learn from their experiences and increase self-awareness, which, in turn, can improve individual professional standards, strengthen teams and enhance patient-centred care and clinical outcomes.
For referrals to Elysium St Neots Neurological Centre or other Elysium centres visit: www.elysiumhealthcare.co.uk/neurological
Reference source: https://www.nursingtimes.net/news/ professional-regulation/nmc-highlights-importance-of-nurses- reflection-on-practice-18-06-2019/
Robots and resilience at Askham Rehab
NR Times reports on a new rehabilitation approach taking place in Cambridgeshire.
Despite a year of relentless change and upheaval for all involved in neuro-rehab, one provider in Cambridgeshire has been able to keep its ongoing development on track.
Askham Rehab, part of the Askham Village Community, is a recently-launched specialist rehabilitation service incorporating the latest in rehab robotics and sensor assisted technology.
While the firm has invested in state-of-the-art technology to do the heavy lifting, however, its rehab services remain person-centred, as director Aliyyah-Begum Nasser explains.
“We’re a specialist rehab centre in essence, and so, although the robotic technology helps us to get the most out of our patients and staff, we are very much family-focused.
The equipment is obviously fantastic but we know from experience that a person’s mindset, and their ability to sustain whatever improvements they make, comes down to the people who are supporting them – their family members.
“We’ve been on some real journeys with many of our family members who just didn’t understand the impact of a brain injury in terms of how it can impact behaviour or what it can do for cognition.
“Once they understand that, suddenly they become a lot more compassionate, and a lot more supportive; they become part of the recovery process, rather than being a frustrated observer.”
With recognition of the family’s paramount importance to recovery, Askham Rehab does everything within its power to harness this force – including by enabling families to stay together in specially-designed apartments on site.
Aliyyah-Begum says: “The flats are fully adapted, with cantilever cupboards, height-adjustable sinks in the bathroom and full wet room with turning spaces.
“We have the patients themselves participating in rehab, specifically to their programme, but relatives are also there from the beginning, seeing the improvement and being part of our process from the outset.
“We think of the centre as more of a rehab environment; it’s not a just care home with therapy as an added extra.
“So from the minute our patients wake up to the minute they go to bed, everything is based around their recovery goals, and everyone is working together towards achieving them.”
And robotics are an important tool in pursuing these goals through patient exercise. They help therapists to achieve the repetitions and intensity needed to progress their clients, as Aliyyah-Begum explains.
“The point of the robotics is that they respond to the patient. For example, if you set the machine on a left lower limb, but it senses that there is more pressure being exerted through the right limb than the left, it will automatically respond to make sure the patient is moving the correct part of their body.”
The centre’s head of rehab and nursing, Priscilla Masvipurwa, says: “This is a real a game changer in our approach to rehabilitation.
“Robotics help to bridge the gap, increasing the frequency and repetitiveness of treatment, something that’s an essential part of the process.
“We anticipate that this will enable us to support our patients in reaching their goals in a more efficient and sustainable way.
“The centre has so far invested in four items from robotic rehabilitation firm Tyromotion, but is looking to add more over time, as the benefit to both staff and patients becomes ever more evident.
Aliyyah-Begum says: “It’s really important to the team at the centre that the robotics aren’t just seen as an add on.
“There is a lot of nervousness about robots replacing therapists, but our service is still very much therapy-led.
“What this means in practice is that, where a resident would previously have had maybe an hour of therapy time in an afternoon, now you have an hour of therapy time, and then you can carry on exercising if you want to, or carry on playing games with other residents.
“For example, one of our machines, the Myro, enables patients to play games like bat and ball, or perform virtual tasks like sweeping leaves.
“However, because it is all sensor-assisted, if it senses that the patient needs to work a certain hand, it will alter what it is asking them to do accordingly, while they won’t even necessarily feel they’re having therapy – it’s all part of the game, and part of their socialising with other residents.”
Askham Rehab forms part of the Askham Village Community, on the edge of Doddington village, in Cambridgeshire.
It provides specialist care for people of all ages, offering day visits, respite care and continuing long-term support, both on-site or at home.
The site consists of five homes, three of which are specialist neurological facilities. In total, the neuro-rehab team can look after up to 52 patients at any one time, with 120 staff made up of rehab professionals and specialists.
The team comprises carers nurses, physiotherapists, occupational therapists, speech and language therapists and psychologists.
Aliyyah- Begum believes that the introduction of the robotic rehab services, combined with the patient-led therapy the group has been offering for 30 years, can only enhance the centre’s outcomes.
She adds: “We know that there is an increasing number of care homes that offer specialist therapy, but the difference with Askham Rehab is that we have embedded it into the whole culture of our setting – and the outcomes really speak for themselves.
“We often discharge people earlier than planned, and that’s a testament to the fact that the patients are really working hard with the team throughout their stay with us to achieve their goals – and that is the key.”
For more information about Askham Rehab, visit www.askhamrehab.com
Astrocytes identified as master ‘conductors’ of the brain
In the orchestra of the brain, the firing of each neuron is controlled by two notes – excitatory and inhibitory – that come from two distinct forms of a cellular structure called synapses.
Synapses are essentially the connections between neurons, transmitting information from one cell to the other. The synaptic harmonies come together to create the most exquisite music–at least most of the time.
When the music becomes discordant and a person is diagnosed with a brain disease, scientists typically look to the synapses between neurons to determine what went wrong. But a new study from Duke University neuroscientists suggests that it would be more useful to look at the white-gloved conductor of the orchestra – the astrocyte.
Astrocytes are star-shaped cells that form the glue-like framework of the brain. They are one kind of cell called glia, which is Greek for “glue.” Previously found to be involved in controlling excitatory synapses, a team of Duke scientists also found that astrocytes are involved in regulating inhibitory synapses by binding to neurons through an adhesion molecule called NrCAM. The astrocytes reach out thin, fine tentacles to the inhibitory synapse, and when they touch, the adhesion is formed by NrCAM. Their findings were published in Nature on November 11.
“We really discovered that the astrocytes are the conductors that orchestrate the notes that make up the music of the brain,” said Scott Soderling, PhD, chair of the Department of Cell Biology in the School of Medicine and senior author on the paper.
Excitatory synapses — the brain’s accelerator — and inhibitory synapses — the brain’s brakes — were previously thought to be the most important instruments in the brain. Too much excitation can lead to epilepsy, too much inhibition can lead to schizophrenia, and an imbalance either way can lead to autism.
However, this study shows that astrocytes are running the show in overall brain function, and could be important targets for brain therapies, said co-senior author Cagla Eroglu, PhD, associate professor of cell biology and neurobiology in the School of Medicine. Eroglu is a world expert in astrocytes and her lab discovered how astrocytes send their tentacles and connect to synapses in 2017.
“A lot of the time, studies that investigate molecular aspects of brain development and disease study gene function or molecular function in neurons, or they only consider neurons to be the primary cells that are affected,” said Eroglu. “However, here we were able to show that by simply changing the interaction between astrocytes and neurons — specifically by manipulating the astrocytes — we were able to dramatically alter the wiring of the neurons as well.”
Soderling and Eroglu collaborate often scientifically, and they hashed out the plan for the project over coffee and pastries. The plan was to apply a proteomic method developed in Soderling’s lab that was further developed by his postdoctoral associate Tetsuya Takano, who is the paper’s lead author.
Takano designed a new method that allowed scientists to use a virus to insert an enzyme into the brain of a mouse that labeled the proteins connecting astrocytes and neurons. Once tagged with this label, the scientists could pluck the tagged proteins from the brain tissue and use Duke’s mass spectrometry facility to identify the adhesion molecule NrCAM.
Then, Takano teamed up with Katie Baldwin, a postdoctoral associate in Eroglu’s lab, to run assays to determine how the adhesion molecule NrCAM plays a role in the connection between astrocyte and inhibitory synapses. Together the labs discovered NrCAM was a missing link that controlled how astrocytes influence inhibitory synapses, demonstrating they influence all of the ‘notes’ of the brain.
“We were very lucky that we had really cooperative team members,” said Eroglu. “They worked very hard and they were open to crazy ideas. I would call this a crazy idea.”
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