Multiple sclerosis can affect the brain and spinal cord and cause a range of symptoms, including problems with vision, arm and leg movement, sensation and balance.
The condition slightly reduces life expectancy and causes occasionally mild – but usually serious – disability. There are around 100,000 people with diagnosed MS in the UK, with most receiving their diagnosis in their 20s and 30s, although it can develop at any age. It is about two to three times more common in women than men.
MS starts with individual relapses or gradual progression. More than eight out of every 10 people with MS are diagnosed with the ‘relapsing remitting’ type, which causes episodes of new or worsening symptoms.
These relapses typically worsen over a few days, last for days, weeks or months, then slowly improve over a similar time period. Relapses often occur without warning, but are sometimes associated with a period of illness or stress.
Around half of people with relapsing remitting MS will develop secondary progressive MS within 15-20 years, and the risk of this happening increases the longer individuals have the condition.
Just over one in 10 people with the condition start their MS with a gradual worsening of symptoms. In primary progressive MS, symptoms gradually worsen and accumulate over several years, and there are no periods of remission, though people often have periods where their condition appears to stabilise.
Causes of MS
MS is an autoimmune disease which is believed to be caused by an interaction between genetic make-up and environmental factors; particularly those to which people are exposed in the first 10 or 15 years of life.
Migration studies show when you have families moving from a low prevalence area like Spain (one in 1200 approx.) to a high prevalence one such as Scotland (one in 400), the risk of MS for children goes up.
But for people aged over mid-teens, it does not. People in higher prevalence areas may have less sunlight exposure, and therefore less vitamin D, and more exposure to viral infections.
We don’t fully understand the genetic element of MS but genetics are likely to have a small effect on susceptibility. Research continues into MS causes, including recent focus on the Ebstein-Barr Virus (EBV) and its potential link to MS; but much more work is required on this front.
The search for a cure
We had nothing to treat MS 30 years ago, but now there are around half a dozen approved treatments – with more coming through.
All of these treatments are for relapsing MS and, as yet, there is no approved therapy for the progressive type. Once in that progressive state when the body starts to deteriorate, there is no treatment to slow down, halt or reverse it. e treatment landscape is changing, however.
There are several reasons for optimism, including the emergence of ocrelizumab, which targets B lymphocytes in the immune system. It has been shown to reduce the rate of progression in primary progressive MS cases.
The drug is currently under consideration by the US Food and Drug Administration but is not yet available here in the UK.
Among a number of other drugs at various trial stages is siponimod, which has shown beneficial effects in secondary progressive MS and is certainly a step in the right direction.
In all the recent and current trials, it is unclear whether these treatments work in a subpopulation of progressive patients or for everybody. Trials have tended to involve slightly younger people at the earlier stages of the disease, rather than those with advanced progressive MS.
High dose Biotin, which targets energy metabolism rather than inflammation, is a potential option for all with progressive MS. It has been shown to bene t both forms of progressive MS and a large trial is now underway.
Generally, I am optimistic about future treatment for progressive MS. What the MS field has achieved in the last three decades is impressive; more progress has been made than with most other neurological conditions.
In the early 90s, nearly all of the focus was on controlling relapses. e understanding was that if you took out the relapses, you could prevent the progressive disease. That has not turned out to be the case, but in the last five years researchers have started to focus on progressive MS. One day there may be treatment options that can actually restore lost functions or at least maintain functions at risk of deterioration.
Traditionally there was an average of six years between the first symptoms emerging and a primary progressive MS diagnosis. is now stands at around 3.8 years, according to one recent clinical trial.
This is still a relatively long time, mainly because of a lack of treatment options for early diagnosis. Progressive MS is much slower than many other neurodegenerative conditions. Given that there’s no treatment, there’s an argument that doctors shouldn’t vigourously pursue a progressive MS diagnosis for someone who’s living a full and active life.
Early symptoms might initially be assumed to be something minor, like a trapped nerve – but greater awareness of progressive MS might help the link to be made with MS at an earlier stage.
With relapsing MS, we currently have no way of knowing who is going to have lots of attacks and who will be minimally affected years down the line.
With no predictive tests, treatment is centred around handling uncertainty. All the drugs are directed at reducing the frequency of relapses, which occur on average every 18 months if untreated.
What relapses look like
The symptoms of a relapse depend on where the inflammation is. If it is in the optic nerve, for example, a person may experience blurred vision and discomfort when they move their eyes. Inflammation in the spinal cord can affect arms, legs and bladder function. If it is in the brainstem, it can affect eye movements and cause tunnel vision, speech problems and other neurological problems.
Outlook for people with MS
On average, life expectancy is reduced by around five years, while there is a very small proportion of people with MS who die young. This is becoming increasingly rare as drugs advance. Although the progressive stage is not fatal, disability can be severe. However, the disease is much slower in its progress than motor neurone disease, for example.
Impact on the brain
A lot of tissue is generally lost through brain and spinal cord atrophy caused by a loss of nerve cells. As the brain and spinal cord shrink, physical functions like motor, bladder and bowel control, and co-ordination, can deteriorate. e cognitive speed of information processing can also slow down. If information is arriving at a fairly fast rate, it can be difficult for the individual to gather and process it. In general, the ability to process information is relatively intact, but the speed of processing is reduced.
There are a lot of symptomatic therapies which are both pharmacological and non-pharmacological. Commonly, patients will receive cognitive and physiotherapy sessions, such as training on specific areas including bladder control and pain management. There are some approved therapies to improve walking, but these tend to have around a 50% success rate, with many people experiencing only temporary improvement.
The rise of self-prescription
Members of the MS population are generally very motivated, with a tendency to look up treatments on the internet. In my experience, a lot of patients are taking a fairly high dosage of vitamin D supplements, as recommended.
Others are also taking biotin or anti-ageing, anti-oxidant supplements. Biotin has also been known to interfere with blood tests so it is important that people with MS are encouraged to discuss what they are taking with an MS neurologist. Of course, it is ultimately up to the individual what they decide to take.
Care provision challenges
There aren’t enough neurologists in the UK, which means it can be difficult for MS patients to access the expertise that can help them.
This shortage has made the role of specialist MS nurses evermore crucial within the care model. Neurologists still pitch in with complicated cases and diagnosis, but nurses are increasingly important in terms of immediate access to care.
Access to physiotherapists, occupational therapists and MS centres based in the third sector is also on the rise.
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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