Serious injury triggers a small army of professionals into action. Each one plays their part as the patient is carried through the fight against death or permanent damage towards rehab and recovery.
Yet, despite being primed for this battle, one profession is all too often being left out – to the detriment of the brain and spinally injured.
So says Sheri Taylor, a registered dietitian with over 20 years of experience who works with people with serious injuries and neurological conditions.
Beyond the acute care given immediately after an injury, and cases where artificial or tube feeding is required, a dearth of input from dietitians exists, she believes.
Malnutrition and missed opportunities to maximise recovery are two worrying by-products she is witnessing as a result.
“Adequate nutrition and hydration should be fundamental parts of neuro-rehab,” she says. “I find a lot of clients are not even meeting the basic levels required.
“There’s a bit of a mixed bag in the UK in terms of dietetic service provision and how quickly nutritional support is implemented. A lot of trusts have very specific criteria that people have to meet before they are allowed to see a dietitian.
“You need to be quite severely malnourished or overweight – or have a severe medical issue – before there is any service provision from a dietitian. I don’t see much in the way of intervening before issues arise.”
The prevalence of malnutrition in UK brain and spinal cord injury centres is poorly evidenced – perhaps a further sign of neglect in this area; but various studies do point to a festering problem generally among the severely injured.
Swedish research shows that 68 per cent of patients with brain injuries who had regained the ability to eat independently, were malnourished within six months of their injury (Krakau, 2007).
Figures suggest spinal injury patients also face a heightened malnutrition risk. One study found that 44 per cent of spinal cord injury cases were at risk of malnourishment when admitted to a spinal injury centre following acute care (Wong et al. 2012).
The research into the UK’s network of spinal injury centres also found that less than a fifth of centres weighed patients at admission.
The remainder said they had no specialised weighing scale on site and therefore were unable to weigh patients until they were mobile.
Eight out of 11 centres said they used some form of nutritional screening tool. The ratio of dietitians to patients overall, however, was well below that of any other intervening force.
There were 4.8 dietitians serving the 482 beds covered in the data. This 1:100 ratio compared to more than 1:1 for nurses, 1:6 for physios and 1:9 for occupational therapists.
The speed at which tests for malnutrition can be carried out make high levels of undernourishment in brain and spinal injury centres particularly confounding to Taylor.
The standard Malnutrition Universal Screening Tool (MUST) requires only a few pieces of data – the patient’s BMI, how much weight they have lost in the last three to six months and whether any conditions or symptoms have stopped them eating for five or more days.
“Those three questions are not even being asked in some centres. Often so much focus is on the high-level factors in the search for answers, such as medication and technology, while some of the basics are being overlooked.
“Surely the basics must be met before we look at more costly interventions?
“Perhaps it’s assumed that a client has neural fatigue, for example, but are we sure they are not anaemic or dehydrated? It’s worth at least asking these questions to rule things out.”
As a Canadian, Taylor’s career was forged in a free healthcare system which places much more importance on disease prevention than in the UK, she says.
“A lot of work is done in Canada in ensuring people have adequate levels of calcium and vitamin D, for example, to help maintain their bone mass. This costs a lot less than having to do surgery on someone who breaks their hip further down the line.”
Improving nutrition levels at the earliest point benefits both patients and paymasters of public health. In the context of brain injuries, earlier intervention through better food and hydration could be particularly useful in preventing loss of muscle mass.
“We know malnutrition increases the risk of infection and the length of hospital stay. Similarly, obesity increases the risk of chronic diseases and the need for specialist equipment. All of which increase the cost of care over time.
“From a neuro-rehab perspective, a major traumatic injury usually results in serious levels of inflammation in the body. This kicks your metabolism into a higher gear for a certain amount of time.
“This increased metabolic rate can actually lead to your muscle mass being broken down quite quickly. This leads to lots of problems down the road, meaning more rehab is ultimately needed to regain that muscle mass.
“Also, while the patient may have higher energy needs, if they are sedated or ventilated, they may have a lesser ability to take food orally.
“So if we can intervene early on and try to minimise the amount of muscle mass they lose, that would obviously be very cost-effective.”
Taylor’s work with brain injured clients sees her liaising closely with a wide range of neuro-rehab professions.
“I work with doctors to make sure blood tests are carried out to rule out certain conditions, such as anaemia, which could be affecting the person’s energy levels.
“I also work with them around laxative use, because if we can make certain changes often laxatives are no longer required.”
She also eases the journey for neuro-rehab patients from residential to community settings.
“I can add, subtract or adjust different nutritional supplements which that person may have been on in a rehab setting, if they perhaps have different needs in the community.”
Speech and language is another area of focus. “The client may have issues with their swallow and may require texture-modified diets, such as a pureed or thickened fluids diet.
“I work closely with the family support team to make sure they have the food that they enjoy, prepared in a way which is suitable given any swallowing issues they may have.”
When Taylor first began working with neuro-rehab clients, she spent a week living on a pureed diet to learn the nuances of making food enjoyable despite a lack of texture.
Today she remains on something of a crusade against unappetising mush.
“I worked as a locum in the NHS for a few years and repeatedly saw people with swallowing problems being given very limited diets that seem to revolve around mashed potato, yoghurt and supplements.
“But it doesn’t have to be this limited. People are often stuck for ideas and don’t know how to make adjustments. But food is a huge part of someone’s quality of life and shouldn’t be restricted unnecessarily.”
Nutrition’s impact on muscle mass and bone density make dietitians highly relevant to physiotherapy too.
Specific interventions include helping to alleviate constipation, which may have a detrimental effect on spasticity levels.
Issues such as chronic diarrhoea or IBS can also prevent clients accessing therapy that could help them, like hydrotherapy. There is also a psychological element to Taylor’s work.
She works with neuropsychologists in cases where agitation levels may be exacerbated by some underlying problem such as abdominal pain or bloating.
She also provides input to occupational therapists as they work to get clients preparing food independently.
An area which Taylor says requires more involvement of dietitians is in cases where best interest decision-making is relevant.
“Support teams are very good at encouraging people to make their own decisions. But if somebody is repeatedly making bad food choices, such as continually asking for fast food, for example, there is often still some reluctance [to allow] a dietitian to step in and help to make best interest decisions where appropriate.”
More generally, Taylor is focused on challenging perceptions about the link between nutrition and recovery among neuro-rehab professionals.
“I go to a lot of neuro-rehab conferences and people often ask me what a dietitian has to do with brain injuries. People are often fascinated when I tell them the many ways a dietitian can help, but they usually admit it had never crossed their mind to
work with someone like me.”
Taylor hopes emerging evidence about links between nutrition and recovery will raise the profile of dietitians in neuro-rehab.
“There is a lot of research being done on the impact of nutrition on neuro-rehab and recovery, in areas such as inflammation, brain functioning and mood.
“Hopefully in the next few years we will see more guidance or even set recommendations, like ‘every brain injury case needs omega 3’ for example. We’re very close, but not quite there yet. Certainly, there is tremendous potential for this.”
A breakthrough on this front may come via a seemingly unlikely source – the American forces.
“The United States military is investing serious amounts of money into this exact area. They are trying to gain as much information as possible on when we need to intervene and with what dose in order to either prevent problems or to speed up the brain’s recovery as much as possible.”
One such study by the US Department of Defense is an investigation into links between omega-3 fatty acids, mainly found in fish oil, and suicide prevention.
A more famous example came 13 years ago when its research arm, the Defense Advanced Research Projects Agency (DARPA) called on the science community to create the optimum food for soldiers in battle.
Biochemists responded with the invention of a substance which generates energy from ketones – molecules formed by the breakdown of fat – instead of carbs fat or protein.
The product is far from being widely used by members of the public, but is currently being hyped as an entirely new category of fuel for humans.
Long before the next generation of scientifically pimped super foods fill supermarket shelves, however, Taylor has a much simpler vision; for everyone in rehab to receive basic levels of nutrition and hydration.
“Adequate nutrition and hydration affects every single part of how your body and brain function. It affects energy levels, muscle mass, bone density, skin integrity, and should be a cornerstone of rehabilitation. It is absolutely fundamental to it,” she says.
Legal view: Dietary decisions for people who lack capacity, by Sintons’ Kathryn Riddell
The Mental Capacity Act 2005 (MCA) provides a legal framework enabling decisions to be taken on behalf of persons who lack capacity.
Five key principles underpin the MCA. Firstly, a person is assumed to have capacity to make a decision unless assessed otherwise. Secondly, all practical steps must be taken to enable a person to make their own decisions.
Thirdly, incapacity must not be assumed simply because someone makes an unwise decision. Fourthly, all decisions made on behalf of a person who lacks capacity must be taken in their ‘best interests’.
Finally, when a ‘best interests’ decision is taken, regard must be given to whether the purpose can be achieved in a less restrictive way. Where there is concern that a patient is making bad dietary choices, potentially detrimental to their health, the first question to ask is whether they have capacity to make those choices.
The test for capacity is set out in the MCA. Remember, incapacity cannot be assumed just because a person makes unwise dietary choices.
If the patient does lack capacity to make healthy dietary decisions, then those caring for him/ her are empowered by the MCA to make dietary decisions in their ‘best interests’.
The MCA stresses the importance of ascertaining the wishes of the incapacitated person and consulting with other interested parties – including relevant health professionals.
Ultimately, an assessment of ‘best interests’ involves a careful weighing up of ‘pros and cons’ in order to reach a decision which achieves its purpose while simultaneously causing the least infringement of the rights and freedoms of the person who lacks capacity.
Helpful guidance can be found in the MCA Code of Practice (available online by searching on the gov.uk website).
Kathryn Riddell is a partner and medico-legal specialist at law firm Sintons, based in Newcastle upon Tyne.
Inspiring a brighter future for residents
A neuro-rehab provider which opened its first facility in Worcester shortly before the first lockdown has succeeded against the odds – and now has plans to expand in 2021, as NR Times reports.
Inspire Neurocare provides support for people with a variety of neurological conditions, offering rehabilitation, respite and palliative care.
The firm opened its first specialist care centre in Worcester in February 2020, and this will be followed by further facilities in Basingstoke and Southampton in 2021/22. Inspire prides itself on a novel model of care that has “no limitations on the possibility of recovery,” all led by director of clinical excellence Michelle Kudhail.
A key element of the centre’s approach is the team’s commitment to understanding that every patient, and the circumstances that led them there, is different.
Whether this means enabling people to leave high dependency hospital units and develop their independence in a modern, home-from-home environment, or providing long-term support or end-of-life care, the service is designed to work around the needs of each patient.
Michelle’s background means she is the ideal person to head up the Inspire team, having worked as a neuro physiotherapist in the NHS until 2010, before moving into the private sector.
She takes an holistic approach to patient care, which has led to the creation of a team of life skills
facilitators and therapists at the provider, who develop their care around the needs of everyone.
“The life skills facilitators support and assist the residents to do as much as they can for themselves,” she explains.
“As the name suggests, their role is more than a carer; it is to facilitate the residents in all aspects of their care, whether that’s helping them get their breakfast, choosing what they are going to wear, or taking their medication.
“Their skills are broad because we want them to be involved in all aspects of the residents’ care; and because we want to provide what they need at the time that they need it.
“Roles such as this also enable us to evaluate the outcome of any action. If a resident has been given pain medication, a facilitator can assess whether it’s been effective, rather than a nurse giving the medication and then not seeing them until the next round.
“We also know from a therapy perspective that some patients don’t respond well to having therapy at a fixed time on a particular day; they simply might not feel like doing it. Our facilitators mean we can best provide interventions for the resident when they want them.”
Alongside this role, the facility also employs a wellbeing and lifestyle coach, focussing on the health and emotional needs of both residents and their relatives, particularly during a time when COVID has caused a lot of uncertainty.
Michelle says: “We wanted somebody that had relevant experience in working with residents, particularly with neurological conditions but also with a well-rounded experience so that they would not just focus on one aspect.
“The idea is to have somebody who can offer support in all areas, whether it be psychological, emotional or physical.”
Staff are overseen by experienced rehabilitation consultant Dr Damon Hoad, who shares his clinical oversight with the interdisciplinary team and supports patients on their journeys.
The rest of the clinical team have a wealth of experience within neuro services in and around the region.
The design of the Worcester facility draws on Michelle’s years of experience, and she had the opportunity to use her skills to help develop the purpose-built home.
She says: “We’ve had a lot of involvement all the way through from knocking down the pub that was there, to seeing it grow. Having the opportunity to be involved from the ground up was fantastic.
“Within the build itself we try to consider the needs of younger people, and so the inside of the home is very much a contemporary design and a lot of research has gone into its development to ensure it has the correct, up to date, equipment.”
Adding to the sense of autonomy staff are keen to foster, is the independent living flat, which staff are able to support via environmental controls.
With soundproofed rooms, residents can enjoy listening to music or watching films without disturbing others.
In common with all care facilities, the impact of COVID means that a lot of thought has had to go into the long-term plans for the property. The recently-built visitation suite – known as the ‘family and friends lounge’ – allows visitors to meet their loved ones in a safe and COVID-compliant way.
The suite includes separate access for visitors from outside, and features a large transparent Perspex screen separating each side of the suite, while an intercom enables contact-free communication.
As well as creating an infection barrier, the screen also assists when it comes to residents who may struggle to understand that they are unable to hug their relatives, while still allowing them to communicate and see each other up close.
After each visit, the room is cleaned and decontaminated in preparation for the next visit.
As Michelle explains, human contact is essential for emotional wellbeing, adding: “We’ve tried to create an environment that is as safe as possible, because we know how important visits are to the residents but, more particularly, to their relatives.
“Supporting the residents through this time is vital. We have residents that are used to going out and doing things in the community and we have had to adjust by being creative in the ways in which they can still access things that they enjoy and still communicate with their families.”
And while the pandemic has certainly delivered some challenges, Michelle and the Inspire team have been able to look at some positive outcomes.
She explains: “One of the positives for us is that it gave the team and the residents the opportunity to really get to know each other.
“We could also develop the life skills facilitator role to its truest form, because everybody was very much working together dealing with the crisis, supporting each other and supporting the residents.
“It was a testing time but it actually it brought the team together, bearing in mind the facility opened literally as everything was going into lockdown.”
The creation of the COVID-secure visitation suite is just one example of the creativity with which all at Inspire approach care, Michelle says.
By looking to build collaborations with other organisations, Michelle also hopes to share her hard-won knowledge, potentially becoming involved in research and training in the future.
Despite the upheaval of its first few months, the Inspire team has already achieved some successful patient outcomes.
One such success story is the case of Adrian, who came to the centre for specialist neuro-rehab following a car accident in which he suffered a severe brain injury. In the months that followed, Adrian’s journey enabled him to walk out of the service and return home to his wife and children.
(See Adrian’s story below – and read more here).
While the coming months may bring more challenges, as COVID lingers and vaccinations are rolled out, the Inspire team seemingly has the skills, approach and dedication to rise to whatever the future holds.
‘I’d never imagined using Zoom as part of my physio placement’
Every aspect of neurophysiotherapy has had to adapt with the onset of COVID-19, including how students prepare for a career in the profession. Here, student Tabitha Pridham discusses her experience of a pandemic placement.
Prior to the COVID-19 pandemic, the concept of physiotherapists routinely holding sessions with clients remotely was quite unlikely.
While used to some degree in a small number of practices nationally, telerehab, as it has now become widely known, was not on the agenda of many.
But due to its seismic rise during the past few months, with physios realising the potential of digital and virtual means to see clients when meeting in person isn’t possible, it seems telerehab is here to stay.
While it was never part of the studies of aspiring physiotherapists, they are now having to adapt to something that will most likely be part of their future careers.
“The very nature of physiotherapy is that it is hands on, so it seemed really strange to me at first that we would be using Zoom to do online physiotherapy,” says Tabitha Pridham, a third year student at Keele University.
“But I have seen how useful it can be, particularly for those patients who are very advanced in their recovery and maybe can take part in a few classes a week remotely. I think it can be valuable in addition to face to face treatment.
“I do believe it will carry on into the future, particularly in private practice, so have accepted that telerehab will be something I will be using in the longer term.”
For Tabitha, currently on a placement with neurological physio specialist PhysioFunction, telerehab is not the only big change from her expectations pre-pandemic.
“The use of PPE is something I have had to adapt to,” she admits.
“Every time you see a patient in person, you have to change gloves and thoroughly wash down equipment, to be compliant with the very high hygiene standards.
“This can be time consuming, and when you have back to back appointments I’ve found it can be quite stressful to ensure you’re doing everything you need to do in addition to your work with patients, but that’s something I’m learning as I go.
“Wearing a mask and visor isn’t always ideal for communication, but that’s something else I am finding gets better with time and use. Although it can be quite a juggle when you’re trying to treat a patient with one hand, and trying to stop your visor falling off with the other!”
Tabitha is based in the clinic four days a week, but has to work from home one day a week due to the need for a regular COVID-19 test, to ensure the safety of clients and colleagues alike.
“I have my COVID test every Monday, so I carry out consultations by Zoom that day, and providing my test comes back negative, I see patients in person Tuesday to Friday,” she says.
“I find the mix of telerehab and practical experience is really useful, especially as we are going to be using Zoom and the likes in the long term.”
Having had a previous placement cut short in April due to the pandemic, Tabitha is grateful she is able to get such experience, which accounts for vital clinical hours training for her degree course.
“Some of my year group were taken off their placements and have had to do everything virtually, so I’m lucky that I have been able to continue in a clinic,” she says.
“I’m still getting the same training, as aside from the PPE and new rules around social distancing, clients get the treatment they always have done so the practical work is the same.”
Tabitha is set to graduate in summer 2021 and has the experience of her studies, supported by three years of placements, to help her build a career in physiotherapy.
“In some ways this has been a really weird time to be working in physio, but in others it has been a very good time. This kind of experience prepares you for anything and everything, and the use of telerehab has shown me what it will be like in the future,” she adds.
‘The challenges have been many, but we’ve found ways to overcome them’
The COVID-19 pandemic has forced huge changes within case management and the traditional ways in which clients have been supported. In our continuing series of Q&A features with case managers across the country, Martin Gascoigne of Neuro Case Management UK (NCMUK) shares his experiences.
Can you summarise how the past few months have been for you.
The past few months for NCMUK have been extremely challenging. This is due to the Government initially ring fencing all of the PPE supplies for NHS staff which made it very difficult for us to procure the necessary equipment. Also, due to our Paediatric Clients Parents furloughing, we have experienced different challenges with the type and level of care that they felt they would like us to provide whilst still working in accordance with National Minimum Standards.
How did you adapt to the restrictions of lockdown? Were you able to do this quickly or did it take a bit of time?
We managed to adapt to all of the new guidelines effective immediately as we were informed by the Government that failure to conform with these would mean that we were no longer able to deliver the care needed. NCMUK therefore reassigned staff to new roles to deal with the new daily/weekly challenges set, identifying new sources of equipment provision, medication and standards of care.
What have been the main challenges – were you able to overcome them?
The main challenges we found were that of procuring PPE at a clinical level. Unfortunately we could not identify or purchase any in the UK and so in order to overcome this it was necessary for us to establish a regular supplier overseas who was able to both meet our needs and the needs of our clients.
Has the use of telerehab been of benefit to you?
NCMUK has indeed benefited from digital technology including Zoom and Facetime. During this period of lockdown, telephone calls and digital contact was the only way the case managers/directors could maintain a high level of communication with our suppliers, clients and families.
At this time we also relied on a digital marketing organisation which made sure that our company stayed at number one on page one with Google. This meant that we could maintain our on line presence and as a result of this we would benefit from new referrals which continued to keep us busy.
How have your clients responded? Was it difficult for them to adapt to?
Our clients did find it difficult just understanding the pandemic initially, as we all did, with the obvious additional worries that they would be infected by our carers. This concern, however, was alleviated as the NCMUK team provided all care in a fully barriered manner using face masks, aprons, gloves and hand wash following the Government guidelines set.
Do you feel the lack of face-to-face contact with clients or/and colleagues has been damaging?
Our carers have been continuing to attend their home visits following the correct guidelines throughout the pandemic. This meant that they continued to have face to face contact. New links have been established via digital marketing and Zoom calls but this has been a positive addition to our communication network and as we already undertake telephone reviews with our staff, there was no change to our relationship with our colleagues.
How central do you think the use of telerehab will be for you going forward?
The demand for digital technology going forward should mean that we can develop a better working practice combining the face to face home visits and the human side of our meetings/assessments alongside digital meetings. This has the benefit of reducing the carbon emissions of our team, whose level of travel is reduced.
How do you think the future of case management has been shaped by the pandemic?
The NCMUK team will have the opportunity now to work more from home, allowing them to complete basic administrative tasks within their own environment, thus reducing emissions due to unnecessary travel.
It will also mean that when completing some assessments, these can be carried out via Zoom/Facetime meaning that more out of reach areas throughout the England/Wales can be contacted more easily. It has been necessary for us to think of alternative methods of communication moving forward and these will probably be maintained in the future as they have been a success.
Will you be doing anything differently within your business going forward, compared to your working practices pre-pandemic?
The pandemic has changed our business considerably as we are all now working more from home with the benefit of our staff reducing their overall carbon footprint. This will continue and streamline the industry as there will be more work undertaken on a virtual basis as staff are able to complete the basis administrative tasks within their own home environment in lieu of travelling to the office. It will also allow NCMUK to have clients referred to us who live in more inaccessible areas of the England/Wales which should provide more people access to more services.
Brain injury4 weeks ago
‘I’m sorry for handling the steering wheel with buttered fingers’
Case management4 weeks ago
New case management business continues to grow
Brain injury4 weeks ago
Sleep problems ‘can be worse with mild TBI’
Neuropsychology3 weeks ago
Mental health issues ‘may stem from childhood cognitive problems’
Stroke2 weeks ago
Stroke Association launches long-term stroke/COVID study
Community rehab4 weeks ago
Finding a voice for Richie
Stroke2 weeks ago
Surviving stroke: the transition from hospital to home
Brain injury3 weeks ago
Impact of COVID-19 on brain to be investigated