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The fall and rise of Special K

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‘Revolutionary’ diets come and go as fleetingly as the memoirs of the celebrities who endorse them. But one has outlived them all and could be set for a renaissance in neurological healthcare.

Long before wellbeing gurus told us about the ‘caveman’ (eat as much meat as you can) or the (I will only eat) ‘cabbage soup’, the ketogenic diet was born.

Its basic principle was to ramp up proportional fat intake against a combination of protein and carbs.

It was developed in the 1920s as an improvement on fasting as a treatment for epilepsy. After prevailing in the 30s and 40s, however, the dawn of anticonvulsant drugs pushed it into the shadows.

And here it largely stayed until Meryl Streep and Hollywood producer Jim Abrahams got together to make the movie First Do No Harm, in 1997.

Abrahams’ son had severe epilepsy that had been controlled by the ketogenic diet. Young Charlie was one of the many epileptic children for whom drugs did not work, where ketogenic diet therapy (KDT) did.

The movie shows lead character Robbie overcoming seizures and the horrific side-effects of medication simply through a change in diet. Suddenly the world wanted to know more about this high fat, low carb diet.

Campaigns followed and interest grew among parents, but 21 years later, it’s still being underutilised, especially here in the UK, says expert Sue Wood.

This could change, however, with renewed interest in the diet and scope to extend its reach into brain injury care and general neurological health.

 

Wood says: “There has always been around 30 per cent of individuals with epilepsy who don’t respond adequately or appropriately to anticonvulsive medication, or whose lives are blighted by its side effects.

“But when the drugs took over, experience and skills around the ketogenic diet declined. It’s very difficult to bring something back up to widespread usage when experience and skills disappear. In the UK, we have ketogenic therapy being delivered in all 39 of our main paediatric hospitals. But often people don’t get access to it until much further down 
the line.”

Wood is a specialist ketogenic dietitian at Matthew’s Friends, a charity focused on medical KDT which works alongside NHS KDT teams and offers information and support
for those on a medically supervised therapy.

It also runs its own KDT clinic and training courses for medical professionals interested in KDT.

At the heart of KDT is a reduction of carbohydrates.

This lowers the availability of glucose and the stimulus for insulin secretion – which, in turn, increases the rate of fatty acid oxidation in the liver and the release of ketones into circulation.

Brain tissue rapidly responds, using ketones as the primary fuel to drive energy metabolism. As with many areas of brain science, the exact link between the ketogenic diet and its anticonvulsant effect isn’t definitively understood.

However, it is widely believed that the diet boosts brain energy reserves and stabilises neuronal tissue. It also helps to balance neurotransmitters and various compounds involved in exciting and inhibiting electrical activity within brain tissue.

NICE guidelines recommend that the ketogenic diet is considered for children and young people with epilepsy whose seizures have not responded to “appropriate” anti-epilepsy drugs.

This is backed up by the results of a randomised trial in 2008 involving 145 children aged two to 16. Half were assigned to the diet, with the others put into a control group. Almost 40 per cent of those given the diet saw at least a 50 per cent reduction in seizures. Five children had a 90 per cent reduction.

Wood says: “A child is referred to specialist services, whether in a hospital or to ourselves at the charity. The specialist ketogenics team is run by a neurologist, a dietitian and maybe a specialist nurse. It only takes around three months of appropriately designed treatment to explore whether it will make a difference.

“Most people who reach KDT have been on many, many medications, none of which have produced the desired effect.

“Roughly a minimum of about 40 per cent are going to gain at least a 50 per cent reduction in seizures. This is a similar success rate to trying new anticonvulsive medication. But we do know that if you fail one drug, then a second and a third one, the next one has a much lower chance of working. The people who reach KDT have often failed several medications, so you have a very resistant group already. And, despite that, we still see that 40 to 50 per cent will get a reduction in seizures.”

Many adults also undergo KDT, but official recognition of its value beyond childhood is lacking.

“As far as adults are concerned, KDT services are emerging but there hasn’t been a randomised controlled trial conducted yet. There is lots of evidence supporting it but not at the level we have with children and
young people.”

In the first and largest study of ketogenic diet in adults, published in the US in 1930, over half achieved at least a 50 per cent reduction in seizure rates. More recently, meta-analysis of 12 relevant adult trials, incorporating 270 individuals, reported efficacy in 42 per cent of cases, showing parity with paediatric trials.

Almost half of these studies used a liberal version of KDT known as the modified Atkins diet. Further trials are needed, says Wood.

“KDT is effective in adults but there is not enough evidence. We use it in adults and yes we would say that the efficacy is comparable to children.”

KDT is not for everyone, however.
 “We are talking about something that is delivered under the control of the individual or their family, not under total medical control like taking a tablet. It’s something that you have to deliver within the home or
as an individual, so you have to be taught
and supported and trained in how to do that.

“That’s not the ideal situation for certain people but there obviously are a large number of people who would like the opportunity to explore it. That’s where our support, campaigning and trying to enable services comes into play.

“It’s not readily available in adult neurology departments. There are just pockets of availability, but they are limited and there is very little funding. The NHS has managed funds and the way to set up services for a treatment is to have randomised control trial evidence.

“That’s not there yet. If you’re trying to bring in a more novel approach, albeit from the 1920s, you have to jump through these hoops.

“Such trials have been promised in the past but have never happened. So, we are still waiting for them to take place anywhere in the world. It takes a lot of investment and funding to carry out these types of trials.”

For adults and children, evidence suggests that KDT goes far beyond seizure reduction in epilepsy. While increasingly linked to weight loss programmes, its relevance to serious diseases, including those of the brain, is also being recognised.

An influential paper (Paoli et al, 2014) reviewed evidence for KDT in treating neuromuscular and neurodegenerative conditions.

Although calling for more in-depth studies into the wider potential of the ketogenic diet, it noted that evidence suggests the mechanism of KDT could:

  • Provide an efficient source of energy
for the treatment of certain types of neurodegenerative diseases characterised by focal brain hypometabolism such as Parkinson’s and Alzheimer’s.
  • Decrease the oxidative damage associated with various kinds of metabolic stress. “If compared with glucose metabolism, ketones generate lower levels of oxidative stress in the brain together with a greater cellular energy output and antioxidant capacity,” it reported.
  • Improve “mitochondrial pathways” which can help to improve brain and neuronal metabolism.
  • Allow ketones to bypass the defect in mitochondrial activity founded in the skeletal muscle and spinal cord of Motor Neurone Disease patients.

Wood says: “There is work going on around the world looking at this in terms of a whole host of different neurological conditions, including brain injury.

“When you injure the brain or have a stroke, often the dysregulation of the fuelling of the brain is a component of that and causes part of the damage. The use of ketones, a fuel that can be used within the brain very easily, can serve as an alternative fuelling that can help cellular functions to 
be maintained and continued, for example if there is a dysfunction in glucose metabolism.

“It’s almost like putting in another fuel as a side-line. This is where ketogenics has really got to be properly explored in adults. Conditions like brain injury, Alzheimer’s and Parkinson’s all have a component of fuel dysregulation in the brain. Ketones could provide an alternative fuel and either modify the disease’s effects or navigate around the [problem areas]. Epilepsy is obviously key,
but there is also potential if it were to be explored, for KDT to be used in a wide range of brain conditions.”

As well as reducing seizure frequency, KDT can also lessen their intensity and shorten the recovery time needed afterwards.
But there are other positive spin-offs too. Adults in particular note greater clarity of thought and concentration, more energy and an upbeat mood.

“It’s not just about counting seizures. It’s about clarity of mind and feeling much stronger and fitter. Patients often feel much clearer in their head, even if they are still on medication.

“When we add it on top of the existing medication, patients can still get dramatic changes, even if they had felt lots of side effects from the drug. often it deals with brain fog – this sense of drugginess – as well as poor energy levels and concentration.

“Changing the fuelling of the brain can 
really alter all those aspects. The target is to control seizures but it’s the other dimensions that are really important to people. They obviously want to manage the seizures but aren’t necessarily fully aware of the disability they have on a daily basis from that general cloudy feeling. When brain fuelling is factored in, they can get this sharpness; that’s the payback for having to think carefully about what they are eating every day.

“A lot of people actually follow ketogenic diet plans simply for wellbeing now, although not to the level of detail used for epilepsy. It’s much more mainstream to eat lower carb diets and there are many recipes that people can choose to eat to be happy while doing it.”

For professionally delivered KDT, the following general principles apply:

  • A very low carbohydrate intake
  • An increased fat intake to provide adequate calories, replacing those lost through carbohydrate restriction
  • An adequate protein intake
  • Overall energy control to match individual requirements, delivering growth, weight loss or weight stability as required
  • Vitamin, mineral and trace element supplementation as required
  • Medical assessment and biochemical screening pre-therapy with reviews throughout treatment at three, six and 12 monthly intervals depending on the age/ wellbeing of the patient and stage of therapy

As Wood explains, it is not a DIY diet and must have input from professionals, initially at least.

“It is a therapy that needs to be carefully navigated. Having said that, some doctors may say ‘I think KDT would be good for you but we can’t refer you to anybody… Try it yourself’.

“People might get some benefits but they really need help and navigation to really optimise things, build their confidence and make sure they are doing it the right way.

“A lot of the people referred to it have got dysfunctions. If a child has complex epilepsy, for example, that might be part of whole host of disabilities and dysfunctions. We must make sure that we screen the individuals biochemically to make sure that they have the ability to adapt to metabolising fat. 
Most of us can do it and switch quite easily between using mainly carbs and fat, but there are those individuals who can’t. It’s very important that we don’t put someone on a ketogenic diet who, in fact, has some sort of abnormality in their ability to metabolise fat.

“The whole medical picture has to be
looked at, with the individual biomedically screened. If that’s all ne, we discuss the pros and cons of the treatment, including with the family, carers and the adults.

“Then you would train them for a couple of hours at least with an expert. This is based around the individualised prescription, enabling them to initiate the diet. It’s about controlling the mix of carbs, protein and fat instead of delivering them in a random fashion, altering fuel control in the brain.

“There are degrees of preciseness… There 
is a more liberal approach, where you really tightly control the carbs and you deliver plenty of fat but you don’t necessarily control the protein. That can work as well. We have to pick the right approach for the right person.”

As the 100th birthday of the ketogenic
diet approaches, Wood believes its role 
in neurological healthcare will become increasingly prominent, as long as access to the therapy improves.

From the 1920s when diet therapy prevailed to the subsequent drug-dominated years, “things are going to come full circle and we are going to have to go back to looking at nutrition very carefully,” she says.

“Nutrition is often left out in the NHS but is a very important part of disease management. We want KDT to be available to people who wish to explore it.
“Not everyone with epilepsy would jump at the chance to change their diet, but there are others who are desperate to change things and have been for years.
 It’s up to individuals and we want them to be allowed to explore it.

“We know that around 50 per cent of them will get a really good effect, if not more.”

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‘Don’t be alone, don’t be too proud to reach out for help’

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After Vasili Kalisperas was born a healthy baby, his jaundice was left undetected by midwives and led to him being left with cerebral palsy and needing round-the-clock care. Here, his mum Elena discusses the huge mental health challenges of being a parent in such a position and how she learned to admit it’s OK not to be OK 

 

I’ve always been a very optimistic and positive person, which I do think helps during such traumatic times, but that’s definitely not to say it hasn’t been a struggle. As equipped as you might be in terms of your outlook on life to deal with challenges, when something so traumatic happens to you, it is of course going to be a struggle to come to terms with that. 

No-one tells you how to cope, you can never prepare yourself for something like this. There is no right or wrong way to do things and you can only get through it as best you can. 

My husband and I dealt with things so differently in the early days. He found comfort in talking about what had happened to Vasili, by sharing a lot of information on social media, whereas for me I was more introvert, I didn’t want to do that.

I was diagnosed with PTSD, which stemmed from the fact our situation was so completely preventable. I became fixated with Vasili still being in the womb, when things were still fine, and I so desperately wanted to find a way to turn back time. I had a water birth with Vasili, and every time I had a bath I’d be in there for hours crying, reliving the whole experience of giving birth to him, feeling the exact pains I felt. 

My husband made sure I was cared for and was OK, but finding help was hard. I did try and get medical help but the waiting list was huge. I waited for over a year to see a therapist but I didn’t find it helpful – she wasn’t trained in my needs and was a general counsellor, so I didn’t get anywhere. I was then referred somewhere else, but that was in the same place I had my check ups when I was expecting Vasili, and that in itself was too traumatic. 

After being bounced around for a couple of years, eventually, I went privately and found an amazing therapist. It does take a huge amount of time and energy to relive the experience, but I found that opening up and talking about how I felt was so important. I also discovered EMDR therapy through these sessions, which was fantastic and really helped me so much. I realised how far I had come through taking that decision to open up and look for support. 

If you have a support network around you, then that can be vital in times of trauma. Even if friends don’t know quite what to say, the fact that they’ll listen can be so valuable. My mum and sister were always there, anytime I needed anything. There were times when no-one could say the right thing, no-one could fix what had happened, but just being able to talk and cry and share what I was going through helped me so much. You need to allow yourself time to grieve, as it really is a grieving process. 

In society, while things have thankfully changed massively in recent years, there is still a feeling for many people that showing emotions is a sign of weakness. There is still a stigma in admitting you’re struggling with your mental health, but I see that it’s like your physical health – you’re never going to breeze through life without any problems at all, it’s going to happen to us all at some point. No-one should ever be afraid to admit they’re struggling and they need support. 

Lockdown has been difficult for us all, and seeing the impact on the children and my oldest daughter in particular, has been awful. She is in high school and not being able to leave the house has had a big impact on her mental health. But as a family, we share our feelings and talk about it, and I teach my children the importance of positivity and an optimistic outlook to help them cope with challenges.  

In learning to deal with what you face and move on with your life, you need to accept it and forgive yourself by recognising it isn’t your fault. It has been a long journey for me – Vasili will be nine in May – but we’ve made so much progress. 

While Vasili and our other children are of course our priority, I’ve learnt the importance of making time for self love and care. Without making time for that, you’ll run yourself into the ground. For the last two-and-a-half years, the children have been at school every day, which has meant I’ve had time to take control of my mental and physical health. I started doing daily exercise, which began by making sure I got out to walk every day, and I now regularly go to the gym. It’s a big release for me. 

I’ve also reached a place where I’m able to look to the future and I’ve started my own business as a hairdresser, working from home in a salon we’ve created in an outbuilding. Being a hairdresser gives me a chance to help other people to open up and discuss anything that’s on their mind, which for many people may be the only chance they have to do that. And also, I’m training to be a personal trainer – I’m already a mental health first aider, and I’ve seen for myself the impact that exercise can have during the most trying times, so I think the combination of mental and physical wellbeing support is so important and I’d love to help people with those. 

For me, in being able to find acceptance of our situation, I’ve been able to move on and find time for myself and what I want to do with my life. I’ve definitely found my purpose, both as a mum and as a woman, and I’m in a much better place now. But without having the strength to open up, to reach out and admit I needed some help, I don’t think I’d have reached this point in my journey. 

The one thing I’d say to people who are struggling, whatever their situation or circumstances, is to talk. Don’t be alone, don’t be too proud, and reach out to someone. I’m so pleased I did. 

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‘I’m a rehab professional attempting to rehab myself’

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Having contracted COVID-19, which has now become Long COVID, assistant neuropsychologist Alarna continues to battle a number of effects, including fatigue. Here, she shares her reflections on her experience, which has enabled her to gain a greater understanding of her patients’ wish to return to their ‘normal selves’

 

My name is Alarna, and I am an assistant neuropsychologist at a specialist private neuro rehab hospital. I have worked in both supported living and rehabilitation settings for the past 14 years, with various mental health conditions, psychologically rooted illnesses, degenerative diseases, and rare neurological presentations.

Today in discussion with our company director responding to the question of “How are you?” I found that I had reached a new level of understanding for every patient that I had worked with. I found on some level I could identify with their journey as I am attempting to rehab myself. I answered, “I just want to get back to my normal self”.

In December 2020, I tested positive for the coronavirus and was severely unwell for a period of 2-3 weeks. I initially was unaware that what I was experiencing was anything other than being run down or having a common cold. It was not until day four when I woke up feeling as though someone was sitting on my chest, each time I moved I had to take shallow rapid breaths to remain upright and when I coughed it felt as though I was being punched with weighted gloves from all angles.

This was unlike anything I had experienced in my life. Being someone who would be over a cold within 3-4 days (and very ironically did not know how to properly rest) the situation was entirely foreign to me.

Having thankfully recovered some weeks later I began to find myself falling asleep involuntarily every 2-3 hours, I was still breathless on exertion (from walking up a flight of stairs to carrying a handbag) and generally feeling weak. After seeking advice from NHS 111 I was reassured that this was to be expected following a virus and should subside in a week or so.

Throughout this period, I had regular contact with my supervisors at work who were (and still are) extremely supportive, reassuring, and understanding. It was not until several weeks later that we discussed an action plan to help me ease my way back in to work.

This brings me back to today, four months after having COVID-19 and still suffering with chronic fatigue, occasional breathlessness, and migraines. I am unable to complete a full day at work and once I get home at approximately 3:30pm I have no choice but to stop everything and sleep.

Just a key point I would like to throw in here. Fatigue is not the same as being tired!!

I have been burnt out before, I have been exhausted, and I have been tired, but this unexplainable experience is not like any of the aforementioned. It is like an involuntary shut down. People who mean well advise me to just rest or sleep more not realising that I am sleeping up to 14 hours most days and still waking up feeling exhausted.

In my attempts to help the process along I have completely changed my diet, dropped 20lbs of excess fat, complied with resting when my body tells me to, and my energy levels remain poor. Some days it feels as though my speech is unnaturally slow and slurry, though when asking my colleagues, it is not so for the listener. In summary I cannot function without having a 2–3-hour nap in the early afternoon as well as a full night of sleep.

Though there are so many unknowns with this virus, from my experience I have learnt the following:

–       The importance of self-care and rest. Sometimes in the busyness of life what we think we are doing to take care of ourselves really is not self-care.

–       To appreciate the stillness and tranquillity of silence

–       Spending time alone and reflecting is so peaceful.

–       Your health is one of the most important things you have and needs to be a priority. Facts that I knew before but like so many, have taken for granted.

Personally, as a woman of faith I believe that this situation has and will work out for my good in the end, there is always a lesson or a positive to be taken from every experience. This has also fuelled my ever-burning desire to be instrumental in changing lives for the better, starting with my own.

This situation is only temporary but for many of my patients it is not and returning to their former self is a distant memory not to be realised.

I take this opportunity to thank my incredible supervisor/mentor at Renovo Care, Dr Anita Rose, and Margreet, as well as my amazing colleagues Ana, Chris, and Simone for being so caring and supportive during this difficult time.

Rest in peace to all of those who have lost their lives because of this horrible virus, including my dear Grandpa. May we find and be the solution! Stay safe.

Signed

A rehab professional attempting to rehab herself.

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Taking time to look back – so the way ahead is clearer

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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/

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