A new smart app designed to improve the reading ability of people who have suffered a stroke offers ‘significant’ improvements, a trial has shown.
iReadMore provides computer-based reading therapy using written and spoken words and pictures, and aims to improve word-reading speed and accuracy.
It was developed by the Aphasia Lab, part of the UCL Institute of Neurology. Stroke patients typically need around 100 hours of speech and language therapy (SaLT), to see a marked improvement.
The NHS, however, provides only around 12 hours. The app will enable patients to have limitless hours of SaLT and researchers aim to make it available for general use.
A trial of the app was carried out among 21 chronic stroke patients with central alexia, an acquired reading disorder that also affects speech and comprehension. Participants used the iReadMore app for two four-week blocks, each comprising 34 hours. Their reading ability was measured before, during and after the trial, which was funded by the Medical Research Council.
iReadMore contains a large number of ‘trained’ words, which are regularly repeated during the therapy. It also contains ‘untrained’ words, which are matched for difficulty, but patients do not practice them. This allowed researchers to assess whether there was item-specific learning (when only trained words improved) or a general learning effect (when both trained and untrained words improved). On average iReadMore training resulted in an 8.7 per cent improvement in patients’ reading accuracy for trained words, with some individuals improving by as much as 25 per cent. The speed at which patients read the words also increased. There was no effect on untrained words. Follow-up tests three months later showed the improvements for trained words were largely maintained. During the trial, a second intervention was also investigated, which used transcranial Direct Current Stimulation (tDCS). Here a small current is applied via a patch on the left side of the forehead to stimulate neural plasticity in the underlying brain. The effects of tDCS were apparent on both trained
and untrained words, but the impact was considerably lower, averaging 2.6 per cent improvement in accuracy across the participants.
Lead author Dr Zoe Woodhead said: “Strokes often cause damage to the left side of the brain, which is important for reading, speech and comprehension. “What this study shows is that regular practice with this reading therapy significantly improves people’s ability to relearn and remember words which we are familiar with. “In addition, the electrical stimulation further improves a stroke patient’s ability to read, but the effect is smaller than the iReadMore therapy.” Central alexia is the most common type of
acquired reading disorder in adults and is part of the generalised language disorder, aphasia. In the UK, there are more than 350,000 people with aphasia and around 260,000 of these will have central alexia.
Alex Leff, professor of cognitive neurology at the UCL Institute of Neurology, said: “Following a stroke, patients get around four hours of speech and language therapy in hospital, and in the following weeks the NHS provides, on average, eight hours in the community. “While standard speech and language therapy is effective, patients need around 100 hours to significantly improve, so at least six times more than is currently provided by the NHS. “By making the iReadMore app publicly available, it means patients will be able to have therapy as often as they want, and gain steady improvements. “The application is intuitive and adaptive. The training gets harder for patients as reading improves, ensuring they have incremental improvements at a rate suitable for them.”
A new version of the rehab prescription (RP), which sets out an individual’s required treatment after a trauma, is to be introduced next year.
NHS England says the RP has been updated by clinical experts and patient representatives and is currently undergoing a final review in primary care.
Once launched in April next year, 'RP-2019' will be developed with the involvement of the patient and/or their carers, the authority says.
Crucially, copies will apparently be given to the patient, their GP and their next care provider. If this point is delivered, this would x what many neuro-rehab experts see as a major aw in the RP system.
Last year the Acquired Brain Injury (ABI) Alliance launched a campaign to ensure that all patients leaving hospital after treatment for an ABI receive a copy of their RP, with one also forwarded to their GP.
A Freedom of Information request sent to all clinical commissioning groups in England last year showed that recognition of the RP was "inexcusably low", the alliance said. Of 24 trusts that responded, less than half said they gave the RP to GPs AND patients.
As it launched its campaign, the alliance said: “The rehabilitation prescription is a valuable tool that documents the rehabilitation needs of the individual with an acquired brain injury. It has no value if the individual and their GP don’t receive a copy. "And if the individual and the GP don’t know what rehabilitation is required, then no access to services can be planned or implemented.”
It remains to be seen whether RP mark two will fix these issues. In recent correspondence with the ABI Alliance, NHS England said: “Key things that will be included in every RP-2019 include a clear list of actions for the GP, the patient’s ongoing rehabilitation needs and the services that they have been referred to.”
A contact number for a major trauma centre (MTC) key worker on hand to give advice, and a ‘patient comments’ section, will also be included.
Another of the alliance’s recommendations is that the RP should be used for all patients with ABI, not just those that have been through an MTC. NHS England’s response suggests this may be looked at in the future. It told the alliance: “We hope the new RP will exceed the recommendations of [the ABI Alliance]. Although it has initially been designed for major trauma patients, it is anticipated that this RP could be adapted for other patient groups, including others with ABI.”
It is hoped, therefore, that RP-19 will eventually be mandated for use in all trauma centres, not just MTCs. The alliance intends to continue campaigning for everyone with ABI to get access to the RP. It is also pushing to better educate CCGs and GPs on the role and need for RPs, as well as neuro- rehab services generally.
MS patients in the UK hoping to access the drug ocrelizumab on the NHS have suffered a setback.
Ocrelizumab is an experimental drug which has been tested as a treatment for relapsing remitting and primary progressive MS. It is taken as an intravenous infusion every six months. Last November, the European Commission granted marketing authorisation for the drug to treat both active relapsing MS and early active primary progressive MS. Since then, UK bodies had been assessing it.
In June, the National Institute for Health and Care Excellence (NICE) approved it as a treatment for relapsing remitting MS, but rejected it for primary progressive MS in England and Wales. And now the Scottish Medical Consortium (SMC) has delivered its verdict. It says it is unable to recommend it as an NHS treatment for relapsing remitting MS in Scotland. It does not consider the drug to be cost effective for the NHS in Scotland as a treatment for relapsing remitting MS in comparison to the existing disease modifying drugs, the SMC said.
The body states that Roche, the manufacturer of the drug, did not present a sufficiently robust economic assessment of the drug's use for it to be accepted.
According to reports, the SMC submission for ocrelizumab for primary progressive MS has now been withdrawn.
Ms charity the MS Trust reacted with disappointment to the news. Direct of development Jo Sopala said: “We are very concerned at the continuing delay for people with MS to access ocrelizumab in Scotland.
“For people with relapsing MS, it expands the range of MS treatments by offering a different dosing schedule, a different mode of action, minimal monitoring and a low risk of side effects compared to existing disease modifying drugs. “In primary progressive MS, ocrelizumab is the first treatment which has been shown to slow down progression. “We will continue to make the strongest possible case for NHS Scotland's approval of ocrelizumab for both relapsing and primary progressive MS.”
The Wellington Hospital has the technology and experts on-hand to provide rehabilitation at the earliest opportunity...
Neurological rehabilitation can be a challenging and complex journey for patients. To effectively rehabilitate those who may have suffered a stroke, spinal cord injury or traumatic brain injury, it’s crucial that a patient not only has access to expert-led care and the latest in evidence-based practice, but that personalised plans are created which ensure patients can advance and rebuild their life after rehabilitation.
At the Acute Neurological Rehabilitation Unit at The Wellington Hospital, London (part of the HCA Healthcare Group), we can care for patients from within the UK and overseas and deliver a rehabilitation programme to meet their needs no matter how serious or complex their condition.
Here they undergo a comprehensive assessment, receive a personalised treatment programme and set goals.
Goal orientated, expert led programmesThe unit is the largest private neuro-rehabilitation unit in the UK and our intensive rehabilitation programmes are led by consultants who are experts in their field. We can care for patients who are in a critical state
with the support of an intensive care unit and full diagnostic capabilities. Our consultants are supported by skilled and experienced therapy and nursing teams that include physiotherapy, neuropsychology, music therapy, occupational therapy and speech and language therapy.
The patient, their family and the team work together to identify goals that are motivating and meaningful and will act as stepping stones towards a successful discharge and life beyond hospital.
Specialist assistive technologies
At the unit, patients can access a range of pioneering assistive technologies to support their rehabilitation programmes. This includes a Lokomat, an Indego Exoskeleton, a Functional Electrical stimulation (FES) Bike, an Armeo Spring and Bioness Hand Rehabilitation system for upper limb programmes.
Outstanding clinical outcomes
The unit retains an international reputation for clinical excellence. We use standardised outcome measures to track progress and to
ensure that we are always delivering the very best of care. We are exceptionally proud that we have achieved CARF accreditation consistently over the last seven years, benchmarking ourselves against other rehabilitation units.
This demonstration of clinical excellence makes it a first choice for patients no matter how severe or complex their condition.
Case study: Rebuild a life through rehabilitation After falling ill whilst on holiday, Sophie needed urgent medical attention. She was able to walk to the ambulance when it arrived – but that was the last time she would ever walk. A series of blood tests and scans revealed that she had suffered a cervical spinal cord stroke. Sophie was then own to the Wellington Hospital, before being transferred to its acute Neurological Rehabilitation Unit. She had experienced an incomplete injury, where the spinal cord is only partially damaged, running from C6/7 to T8 of her spinal cord. At this level of injury, Sophie was expected to have minimal use of her arms and legs. Sophie underwent an intensive six month rehabilitation programme which included the use of the FES bike, Lokomat and hydrotherapy pool. Sophie is still at the beginning of a long journey but does now have the use of her arms and hands giving her the independence to now live at home. Sophie now returns to the rehabilitation unit twice a week and she feels positive that, with a strong mind and a positive outlook, she can achieve far more than might be expected.
The 70th year of the NHS is a great opportunity to reflect and consider the professions that underpin services and support patients with their journey of recovery. The fantastic work of doctors and therapists in neurological rehabilitation is often recognised, however, the same cannot be said for nurses. At The Royal Buckinghamshire Hospital centre for specialist rehabilitation and nursing care, we understand that without nurses most rehabilitation programmes and the achievement of recognised goals and positive outcomes would not be possible...
In 2017 we introduced the role of clinical nurse specialist and went through a rigorous recruitment process to find somebody that could bring the skills and experience to grow and develop the team.
We successfully recruited Sarah Harris (pictured above) to the role in October. She has a wealth of experience and expertise in the field of spinal injury and acquired brain injury rehabilitation. Her role has been designed to provide overarching guidance, support and leadership to the nursing staff and to enable an interdisciplinary approach; pulling everything together - therapy, medical and nursing care – to ensure that the best possible recovery outcomes are reached and that patients have a positive experience during their stay. Since introducing this role we have seen a significant increase in interdisciplinary working and effective communication.
This is reflected in feedback received from external professionals attending case conferences who are now experiencing a much more cohesive and robust delivery and review of interventions.
We have also seen a reduction in re-admission to hospital for acute care as the nursing team feel confident and supported in safely managing more complex situations.
This notion of investing within our nursing workforce is clearly demonstrating its benefits across the service for nurses, patients and their families.
It also creates value for money against the ever-challenging financial constraints within healthcare.
Part of this role is looking after the patient pathway from admission to discharge, ensuring that every patient has a personalised and comprehensive plan for their rehabilitation and care.
This does not stop when the patient is discharged - when they go home every aspect of safety and care has been considered with comprehensive transition plans agreed prior to discharge.
Being treated at The Royal Buckinghamshire Hospital is often a life-changing experience for patients. They enter in a vulnerable and limited state, and leave having regained some of their independence. Through support and expertise, it’s people like Sarah who help make this happen; who help change lives.
Sarah is a firm believer that rehabilitation does not begin and end in the therapy gym or hydrotherapy pool. Sarah completes training sessions with all staff on how to carry over what is being learnt in the gym to ensure this is translated on the ward so that function is maximised.
She recently purchased a variety of activities for three bed-bound patients to ensure that they were stimulated and continuing with their therapy over the bank holiday weekend.
Sarah attends therapy handover, timetabling sessions, MDTs, case conferences and nurses’ meetings to ensure that information sharing is seamless and that patients are getting continuity of care. Jackie Jones, director of operations, said: “Since Sarah joined the team, the confidence of the nursing team has soared, there has never been any doubt that they have the required skills, it has just been a case of giving them the belief in their abilities.
"It is a pleasure to see the team grow and evolve. Sarah is a breath of fresh air and really does bring a lot of value to the service and, most importantly, to the patients we support.”
A nationally and internationally recognised centre for specialist rehabilitation and nursing care, The Royal Buckinghamshire Hospital has a rich history in supporting individuals with acquired brain injuries and spinal cord injuries. For referrals contact Ashley.email@example.com. See www.royalbucks.co.uk for more information.
The latest innovations in managing challenging behaviour after brain injury are the focus of a major UK event later this year...
Neurobehavioural Disability after Acquired Brain Injury: Recent Innovations in Clinical Practice and Delivery is the third annual conference hosted by Elysium Neurological in partnership with Swansea University.
The event, in November, brings together leading experts who will share insights on the latest clinical innovations and cutting- edge developments in the management of challenging behaviour following brain injury. Among them will be Dr Jessica Fish - clinical psychologist at the Oliver Zangwill Centre for Neuropsychological Rehabilitation – and Dr Richard Maddicks, consultant clinical neuropsychologist at Psychology Chartered. Also speaking at the event will be Joanna Humphreys and Lucie Phillips, music therapists at Nordoff Robbins, and Professor Nick Alderman, clinical director of neurobehavioural rehabilitation services at Elysium Neurological. Professor Alderman, who is also an honorary professor at Swansea University’s Department of Psychology, says: “Challenging behaviours arising from neurobehavioural disability have been recognised as posing a greater long term impediment to community integration than
physical disabilities. Therefore, it is essential that appropriate rehabilitative intervention is delivered to reduce the financial and social cost to individuals, their families, and society.”
Dr Claire Williams, senior lecturer in the Department of Psychology at Swansea University, adds: “We are absolutely delighted to be holding a third conference in our series of events concerning acquired brain injury. " Our varied, dynamic and practical conference programme will support a wide range of rehabilitative practices and will be of interest to all those interested and/or involved in the care of individuals with an acquired brain injury, including case managers, commissioners, rehabilitation and healthcare professionals, clinicians, academics and the legal fraternity.” The event takes place on the 26 November at the Swansea Marriott Hotel.
Meanwhile, Elysium is also planning a stakeholder event at its Badby Park specialist care centre in Northamptonshire. This event, on 26 September (10am – 1pm), provides an opportunity for healthcare professionals to discuss the many challenges faced by those affected by Huntington’s disease (HD).
Dr Hugh Rickards, consultant in neuropsychiatry at Birmingham and Solihull Mental Health Foundation Trust, will deliver the keynote lecture at the event focussing on developments within clinical research around HD.
Further details can be found on www.elysiumhealthcare.co.uk. Elysium Neurological is the neuro division of Elysium Healthcare, one of the UK’s fastest growing private healthcare providers. Having acquired a number of neurological rehabilitation and complex care services across the UK in the last 18 months, it is now one of the leading providers of neuro care in the UK. Collaborative events such as its upcoming conferences form an important part of its development. The company believes sharing ideas among neuro- rehab professionals, educators, legal experts and charities is vital in continuing to drive the field forward for the good of patients and their families. Its busy programme of stakeholder and continuing professional development events incudes regular ‘Sharing Best Practice’ and ‘Service User’ conferences across the country. Elysium also hosts brain injury forum gatherings, featuring external speakers, and is heavily involved in wider initiatives such as Huntington’s Disease Awareness Day and Brain Injury Awareness Week.
For full details of the brain injury conference in Swansea on 26 November visit: https://abiswan18.eventbrite.com. Please send enquiries to firstname.lastname@example.org. www.elysiumhealthcare.co.uk.
The way in which specialist care homes for people with complex needs are designed and built can have a huge impact on the lives of their eventual residents. Here David Sturrock, development director of Exemplar Health Care, explains his approach to creating living spaces that optimise rehab outcomes.
Building homes for people with complex needs requires consideration at every juncture to ensure that the environment is suitable for each stage of an individual’s care. This goes for people with degenerative conditions such as dementia and Huntington’s Disease, as well as those suffering a rapid decline in health, perhaps through brain injury or stroke. At the preliminary design stages, the Equality Act is a piece of legislation at the forefront of our considerations in terms of making reasonable adjustments to the living spaces for our service users. In addition to the Equality Act, the Care Quality Commission's regulations are also imperative to ensuring we deliver care that is not just satisfactory but outstanding. Regulation 10, 'Dignity and Respect' includes the provision of privacy for when service users need and want it, alongside giving them support to allow them to be autonomous, independent and involved in their local community. This regulation is an area we’ve focused significant efforts upon, across both our existing and new care homes. As such, alongside providing suitable personal care facilities for our service users, we have increasingly developed spaces such as The Hub. This is a space within a selection of our homes that charities and community groups can hire for free. A space of this nature dovetails Regulation 10 in so much as it gives our service users an opportunity to be more involved with the local community, yet there are also the safeguarding considerations which are involved in accommodating groups of people that have a level of access to our service users. As well as having vital spaces to integrate community groups into our home settings, we do, of course, have several rooms to support the rehabilitation of our service users. We have spaces where a variety of entertainment takes place, as arranged by our care staff, and designated sensory rooms which are adorned with special lighting, have music provision and objects to facilitate recovery.
Alongside provision that you would expect, such as sensory and entertainment rooms, our aim to make every day better than the last for our service users has led to us utilising existing spaces in care homes in new ways. These were ways in which we had never anticipated when we first built or acquired the building, and have the required support and understanding at all levels of the business to make it possible. At Quarryfields in Doncaster, a pop-up shop has been developed for service users with learning disabilities to gain volunteering opportunities. Service users are involved in all elements of the shop, from handling finances under supervision to meeting coffee suppliers and making the uniforms. Elsewhere, following feedback a service user provided to his home team, he was accommodated with a new room with the relevant facilities and processes to enable his son to stay overnight. In both examples above, the ability for change empowered not just the service users but the wider organisation to highlight how our physical buildings can be remodelled to provide facilities that not just let our service users survive but thrive.
In addition to our traditional care home
settings, we have developed a service called OneCare which provides accommodation for service users that allows them to have a greater sense of independence. The development of this service has led to an acquisition of existing properties and the development of new buildings on or near land we already own.
OneCare services are unique to the service user’s needs, so each of the flats and homes are developed separately to cater for individual requirements. Examples include a home developed for Simon (name changed to protect his identity), a sufferer of autism who has severe sensory triggers and requires a home which has no skirting boards, radiators or wallpaper. Alongside reducing triggering textures, his flat has been developed so that there is a living space upstairs for when he is suffering from intense anxiety as well as the facility for care workers to stop access to the kitchen area for his own safety. While the space and its facilities are of significant importance, especially in relation to Simon’s triggers, it is the hard work of staff and their role in supporting Simon’s family in the process of transitioning his care to an Exemplar home which is key to his quality of life. Without the understanding and desire from the team to not only cater to his needs but also to allow him the opportunity to develop independence through cooking for himself and keeping him safe, the wider structure and technology would not suffice.
It is important for us to remember the development role when considering how care provision is being developed for people with complex needs - it is the right environment and technology combined with the relevant specialist care which can make a difference to service users’ lives.
David Sturrock has worked across the property sector for over 16 years and is overseeing the current expansion of Exemplar’s property portfolio. Guided by the 2010 Equality Act and Building Control, he works to the relevant regulations to develop homes suited to the service users Exemplar cares for. These include adults with complex needs arising from neuro-disability, brain injury and stroke, enduring mental ill-health, autism, learning disability and early-onset dementia.
The firm has 26 homes across Yorkshire, the Midlands and the North West.
Case study: sensory room is life changing for Ingrid
For several months, Ingrid had been suffering from intense headaches which continued for days without a break. When Ingrid became unable to carry out her day-to-day tasks she was rushed to A&E by her husband and scans carried out in hospital highlighted an aneurism on the brain.
Unfortunately, the aneurism burst before surgery could be carried out and due to its size and impact, Ingrid suffered severe stroke type symptoms, which significantly changed her life.
When Ingrid was admitted to an Exemplar home she was immobile, suffered with poor speech, severe short-term memory loss and very poor cognition and coordination.
The experienced staff in charge of supporting Ingrid worked with family, friends and community therapists to develop a care plan to increase her functional abilities.
The sensory room at the home encouraged Ingrid and paved the way for her recovery in developing her senses using special lighting, music and objects.
Due to her short-term memory loss, Ingrid had initially struggled to come to terms with physio and cognitive therapies. Staff recognised this and worked on a regime of short periods of regular therapy and slowly she blossomed.
As time progressed, Ingrid began reaching her goals. She regained movement, speech and most importantly, her independence. Just 18 months after arriving at Exemplar, Ingrid was able to go home to her beloved family – fully mobile. Almost back to her old self, Ingrid is now completely independent and does not require any further care packages to support her recovery.
Hypopituitarism is a very common, and often misdiagnosed, post-brain injury condition. Here Professor Mike Barnes, of the National Neurological Rehabilitation Chambers, provides an overview for NR Times.
Hypopituitarism means the pituitary gland is not functioning properly. The pituitary gland is the "master gland" that controls all the other hormonal glands within the body. It is a small gland on a stalk sitting in the middle of the brain. Unfortunately, its position, anatomy and blood supply make it vulnerable to traumatic brain injury. The gland is split into two parts – the anterior pituitary and the posterior pituitary.
The posterior pituitary produces a hormone called AVP (arginine vasopressin) which controls the water balance in the body. If this function goes wrong it is called diabetes insipidus (which should not be confused with diabetes mellitus or "sugar" diabetes. It is an entirely different disorder).
Shortage of this hormone means that the person will produce large volumes of dilute urine – often over three litres per day. This obviously leads to thirst and dehydration. It is very common in the immediate, post-injury phase and it is often only seen in the acute hospital. It is relatively straightforward to diagnose and easily treated – by simply drinking more water. However, if the problem is really severe then there are medications that can correct the hormonal deficit.
In the longer term, it is the hormones in the anterior pituitary gland that have such a major impact on daily life. The anterior pituitary gland produces hormones that control sexual function, growth, steroid production and thyroid production.
All these deficiencies have their own particular pattern of deficits which are described further in this article.
Can we predict who gets hypopituitarism? The answer is not really. It tends to occur in younger men but there again, brain injury also occurs in younger men. The type of brain injury is no real help although more severe injury does lead to a higher risk of hypopituitarism. A fracture of the basal part of the skull also leads to a higher risk. A warning sign is diabetes insipidus occurring in the acute phase which gives rise to a higher risk of other pituitary problems occurring later after the injury.
The overall risk of hypopituitarism is surprisingly high and it is said that somewhere between 30-50 per cent of people after a severe brain injury will develop some hypopituitary symptoms at some stage.
It is also important to note that it can occur late after the injury, although 75 per cent of people who get the problem have developed it within the first year.
However, this obviously means that 25 per cent will develop the problem after one year which in turn means that the link between the symptoms and the brain injury is sometimes not made.
So what are the symptoms? The problem is that the symptoms of hypopituitarism can be rather vague and also commonly occur after brain injury even in those who do not have pituitary problems. Overall, the commonest difficulty is tiredness.
As is well understood, tiredness and easy fatigability are also very common after brain injury. It is important to have a high index of suspicion and if someone has particular problems with fatigue after brain injury then they should certainly be checked for hypopituitarism.
To some extent the exact symptoms depend on which hormones are affected. The most commonly affected is growth hormone. As the name implies growth hormone is responsible for growth in children and lack of the hormone will often produce growth failure. However, lack of the hormone can also lead to problems in adults.
These problems largely focus on decreased energy with tiredness, decrease in muscle mass and an increase in fat mass and also depression.
Once again, all these are common difficulties after brain injury. A deficit of the sexual hormones (FSH and LH) will cause loss of libido and, in women, menstrual cycle problems and, for men, erectile problems. There can also be a loss of fertility in both sexes.
The situation is compounded by depression and a lack of energy. These same symptoms also occur with a deficit of ACTH which controls steroid production. Fatigue, weight loss, anorexia (poor appetite) and metabolic problems are common. A low thyroid from a lack of the thyroid stimulating hormone (TSH) in hypopituitarism can also cause tiredness as well as coldness, constipation, hair loss, dry skin, hoarse voice and cognitive "slowness", weight gain and depression.
Thus, whilst there are some specific symptoms, most of the problems of hypopituitarism are rather non-specific and common in brain injury in any case. This comes back to the point that a doctor, case manager or other health professional needs to have a high index of suspicion.
There is a case to be made that everyone after brain injury, certainly at the severe end of the spectrum, should undergo pituitary function testing.
The importance of testing the pituitary is that if a hormonal deficit can be determined then it is easily corrected by hormone replacement. It is clearly vital to detect and treat the treatable.
How do we test for pituitary deficit? The main point here is that a simple blood test to check the level of hormones in the blood is inadequate. Sometimes low hormones in the blood stream can be a pointer but often the hormone levels are in the normal range but are unable to respond to the necessary peak in concentration at times of stress.
Thus to diagnose hypopituitarism properly, the gland has to be put under stress and the hormones measured before and after the stressor to see if the gland is able to respond. There are a number of provocative tests that can be given.
One, for example, is to give the individual a small dose of insulin which lowers the blood sugar and, as a result, the pituitary hormones should rise in response. There are other tests available.
However, the basic rule is that if there is any suspicion of hypopituitarism then the individual must be referred to the local endocrinology department.
The testing is simple but does involve the person coming into a day unit to have blood taken over a period of a few hours before and after the provocative stressor. This is marginally inconvenient but nevertheless is the only proper way to diagnose the condition.
Once a hormone deficit is determined then it is straightforward to prescribe replacement therapy, such as a growth hormone, thyroxine or oral steroids.
This treatment can produce a complete improvement in those particular symptoms. This is clearly a great result for those who may have a very low quality of life as a result of tiredness or depression.
Sometimes there is only a partial improvement after correcting the hormonal deficit and this probably means that whilst the low pituitary hormone had some role in the symptoms, the brain injury itself also played a part in the symptomatology.
However, any improvement is clearly better than no improvement. In summary, hypopituitarism after brain injury, particularly severe injury, is very common.
It can produce a range of symptoms that are rather non- specific and common in any case in the context of brain injury.
There needs to be a high index of suspicion of hypopituitarism and the individual must be referred to an endocrinology department to undergo proper testing.
The results and treatment are often very satisfactory and can produce significant benefits and improved quality of life.
Mike Barnes is a consultant neurologist, rehab physicist and managing partner of the National Neurological Rehabilitation Chambers (www.nnrc.org.uk).
Norwood KW, Deboer MD, Gurka MJ, et al. Traumatic brain injury in children and adolescents: surveillance for pituitary dysfunction. Clin Pediatr (Phila) 2010; 49(11): 1044-9.
Blair JC. Prevalence, natural history and consequences of posttraumatic hypopituitarism: a case for endocrine surveillance. Br J Neurosurg 2010; 24(1): 10-7
Quinn M, Agha A.
Post-traumatic hypopituitarism – who should be screened, when, and how? Front Endocrinol (Lausanne) 2018; Feb 2;9:8. doi: 10.3389/ fendo.2018.00008. eCollection 2018.
Zaben M, El Ghoul W, Belli A. Post-traumatic head injury pituitary dysfunction. Disabil Rehabil 2013; 35(6): 522-5.
Short-termism, poor access to care and gaping holes between paediatric and adult services are exacerbating the burden of child brain injuries, a report suggests.
An in-depth study conducted in the US and submitted to the American Congress outlines many issues hindering the delivery of rehab to brain injured young people.
While carried out by US-focused organisations – the Centers for Disease Control and Prevention in collaboration with the National Institutes for Health – it offers insights for child brain injury treatment globally.
The extensive paper, The Management of Traumatic Brain Injury (TBI) in Children: Opportunities for Action, suggests a lack of knowledge, infrastructure and consistency in services is at the heart of problems in getting young people the long-term treatment they require.
Annually, TBIs in children (aged 14 and under) in the US cause around 640,000 A&E visits, 18,000 hospitalisations and 1,500 deaths.
The leading causes of these incidents are unintentional falls and being struck by or against an object, whereas for those 15-24 years of age, the leading causes were motor vehicle crashes and falls.
Sports and recreational activities accounted for an estimated 325,000 A&E visits among children and teens.
Against such numbers, the report warns: “There is frequently an incomplete understanding about the effects of TBI beyond the initial injury among parents, healthcare professionals and educators.
This often creates barriers to optimising outcomes for children across their lifespan, including the achievement of high school graduation employment, and engagement in a healthy lifestyle.
“It is widely recognised that children with brain injury are under-identified for health and educational services and under-served by existing support, placing them at risk for poor health and educational outcomes.
“Understanding the gaps in care and developing approaches for optimal assessment, access to services and service delivery is critical to ensuring that children with TBI have the best possible treatment and outcomes.”
One of these gaps is a “substantial variation” in acute injury care for children. “Not only are there inconsistences in TBI assessment, but also in the comprehensiveness of discharge recommendations for all severity levels of TBI,” the report says.
Other gaps include:
• A lack of monitoring of children with a TBI over a prolonged period of time a er their injury • Poor awareness of the implications of brain injury and possible pathways among parents
• Difficult access to schools-based support services • Following concussions, a dearth in ‘return to play’ guidelines for activities beyond organised sports • A drop-o in access to care following the transition from adolescence to adulthood
• Limited “TBI recognition” training for professionals involved in the care and support of young people • A lack of hard evidence and research on long-term outcomes for children with TBI
Although the report focuses largely on the US, its findings mirror many of the challenges faced in the UK, says Katy James, head of the Children’s Trust's brain injury community service. “Our experience of supporting children in the community is that all too often the full impact of a child’s brain injury is not recognised and in many cases the injury is forgotten about as the child gets older. "Children and young people with acquired brain injury often experience ‘hidden disability’ - cognitive, communication and emotional difficulties that are not immediately apparent or are not understood by care givers
or educators. “We also know from experience that these difficulties can become more of a problem as children face the challenge of moving into adolescence and towards adulthood.
“And yet we find that support services in the UK are limited and often there is a lack of collaboration between health, education and social care. Provision can be haphazard and influenced by postcode, the nature of the injury and parental ability to have a voice for their child. Young people moving from children to adult services often hit a ‘black hole’. "While recent developments from regional networks and awareness-raising activity is promising, there remains no national framework and we are still a long way off from a cohesive and equitable UK model of provision for children with acquired brain injury. More needs to be done to build the evidence base and research the long-term impact of ABI in order to shape services.”
Almost a century after it was invented as an epileptic seizure cure, the ketogenic diet is on the rise again, in the face of failing drugs and fresh evidence linking it to other conditions including brain injury. Andrew Mernin reports.
'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 • Ongoing home-monitoring of symptoms, plus weight, growth, blood or urine checks • Regular discussions with the managing dietitian (by telephone, email or face to face) to review this data and agree on ‘fine-tuning’ the diet prescription to optimise symptom management. 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.”