Visitors from across the world will join an array of global speakers at a major event in caring for young people with brain injuries.
The fourth National Paediatric Brain Injury Conference, organised by The Children’s Trust – which provides residential and community care for children with neurological injuries and disabilities – is to be held online due to the ongoing impact and implications of COVID-19.
And while the pandemic will prevent the Connections and Collaborations being held in person, the decision to take it online means it can attract an audience far beyond its base in Tadworth, Surrey.
The event, on February 4, brings together some of the neuro sector’s leading clinical professionals to explore some of the fundamental elements involved in a child’s recovery following an acquired brain injury.
From its base, The Children’s Trust has worked with 3,000 children and their families in the past two years, delivering specialist rehabilitation and tailored support as they rebuild their lives following injury or illness. It also provides specialist rehabilitation, education and community services across the UK.
The focus for 2021’s virtual conference will be on family, mental health, technology and transition, bringing together an array of topics which have been risen to the fore during the past turbulent year. It will use the latest evidence-based research to share insight into the neuro sector.
Speakers will include, Dr Anna Maw, Consultant Paediatric Neurologist, Addenbrooke’s Hospital; Dr Meyer Heim, Chief Medical Officer of the Rehabilitation Centre, University Children’s Hospital in Zurich, Switzerland; and Gerard Anderson, Head of Brain Injury Services, Child Brain Injury Trust.
A young person who has been supported by The Children’s Trust will also share their story of specialist rehabilitation at the event, which is sponsored by Irwin Mitchell.
Dalton Leong, Chief Executive of The Children’s Trust, says: “Since its launch in 2017, our National Paediatric Brain Injury Conference continues to go from strength to strength.
“Like many other organisations, we have had to adapt to new ways of working and we’re delighted to still be able to deliver our conference in a virtual format. We welcome new visitors from across the globe, who otherwise may have not been able to attend.”
The conference will be a highlight for The Children’s Trust after a difficult year during 2020 for fundraising for the charity, which, like many others, has been severely impacted by the pandemic.
Earlier this year, TV and music star Martin Kemp made an impassioned appeal on behalf of the charity through a BBC documentary, highlighting the importance of donations on the lives of children and young people with brain injury and neurodisability.
Back in 1995, Martin himself was diagnosed with two brain tumours, which saw him undergo major surgery to remove them, leaving him with memory loss and dyslexia. He has spoken regularly since that time about the massive and lasting impact this had on himself and his family, and chose to front The Children’s Trust appeal in light of his own traumatic experiences.
To attend the National Paediatric Brain Injury Conference, or for more information, visit The Children’s Trust at www.thechildrenstrust.org.uk.
Stroke rehabilitation – an Askham success story
How one stroke survivor was helped to rebuild his life through traditional and robotic-led therapies at Askham Rehab
Our patient lives in Guyhirn, near Wisbech, and is married with children. Having had a stroke earlier in the year, he was admitted to our team at Askham on May 26, 2021, for rehabilitation.
The left-sided thalamic intracranial haemorrhage left him with speech deficits, as well as difficulties with active movement in his right upper and lower limb.
Following our assessments, it appeared that he was also struggling with functional activities and tasks, and as a result, needed further neuro rehab to try and improve them.
Stroke Rehabilitation: Initial Assessments and Treatment
Upon his admission to our rehabilitation centre, each team assessed him (clinical psychology, occupational therapy, speech & language therapy and physiotherapy). Following on from the assessments, we felt collectively as a team that he required ongoing rehab in all four areas.
In addition to getting fit again, his main goals involved walking, speaking, being able to return home to his family and – at some point – returning to work.
Sara Neaves, our clinical lead and outpatients service manager, supported him throughout his treatment, and has since told us about her experience.
“He was so incredibly motivated. He wanted to be active all the time, and wanted exercise programmes to continue his therapy when he wasn’t in sessions,” she said.
“He was always pushing himself; once, he said ‘I’m bored’ – and this gave us the opportunity to face a new challenge and think outside the box to come up with engaging ideas and activities.”
The two teams worked together on his upper limb, with a combination of hands-on therapy, robotics, Saebo and neuro-muscular stimulation.
The occupational therapy team proceeded to work on functional tasks with personal care, and the care team continued this work with facilitating movements and activities.
Meanwhile, the PT team worked on strength training, targeting the pelvis and hip area to aid weight-bearing, and he was soon able to progress to stepping and mobilising.
Additionally, the speech and language therapy team worked with him on oro-motor exercises to aid movement and build tolerance. This involved word formation training, as well as work on sentence structure.
Simultaneously, we started him on an exercise programme, and the psychology team supported him with strategies to help him with his mood.
Advancing to Robotics
Throughout his treatment, he made use of our robotics suite. He used the large gym and satellite gyms to support his therapy, and participated in groups and activities. He also used the outdoor spaces to work on different gait patterns and balance work.
We incorporated several of our robotic machines into his treatment, including the Omega Plus. This helped him work on his lower limb strength, control, exercise tolerance and cardiovascular training.
Stroke Rehabilitation Treatment: Reflection, Recovery and Looking to the Future
Commenting on his treatment, Sara said: “He responded to the treatment very quickly, mainly because he was so engaged and motivated to change. His speech also improved very quickly, and he was able to make his needs known. Very soon, he was able to step-transfer with the help of staff and a quad stick.”
When reflecting on the most challenging parts of his treatment, Sara said: “I think the hardest part for him was being so reliant on people initially, as he has always been so independent. He missed his wife and children a lot too.
“However, he was always very motivated and engaged. He would grab anything we asked him to do with both hands and pass it with flying colours.”
The location of his treatment certainly helped with his recovery. He was close to his wife and children, which meant that they could visit very regularly. The quietness and open surroundings also allowed him to venture outside and, towards the end of his stay, he often took himself outside for walks.
Working with our patient has allowed us to incorporate everything that we work towards as a team – from empowering residents to lead in their rehab programme to working towards a completely individualised and holistic approach to care.
After a five-month treatment programme, he can now hold a telephone and have face-to-face conversations using full sentences.
Physically, he left us independently mobile with no walking aid. His mood was brighter, and required no care at home as he had worked so hard on the functional and personal tasks in occupational therapy.
Throughout his stroke rehabilitation treatment, we were granted extra funding for him to remain at Askham so that we could facilitate his independence. We were delighted to successfully achieve this, before discharging him from Askham on October 21, 2021.
Working with him has been incredibly rewarding. We were all able to push ourselves to get the very best out of him – and to see him walk out of the unit with his wife was amazing.
His family supported him constantly throughout, and they are so pleased to have him home.
Meeting the growing demand for specialist nursing care
Exemplar Health Care is expanding to bring additional and much-needed resource to complex care provision
Improvements in healthcare and living standards mean that people in the UK are living longer. However, chronic conditions, disease and disability mean that the number of people with complex needs is also increasing.
Meeting the care requirements of these people, and ensuring that they get the right care, by the right team and at the right time, is a challenge for commissioners.
Exemplar Health Care is a specialist provider of nursing care for adults living with complex and high acuity needs, which currently has 35 care homes across England – and plans to double in size by 2026.
“We have an ambitious growth plan over the next five years, and we are currently expanding in the Midlands, North West, North East and Yorkshire and Humber,” says Charlotte Lloyd, developments director at Exemplar Health Care.
“We are different from other care providers. Around 60 per cent of our service users come to us following a failed placement, having not settled at their previous home or homes.
“This is mostly due to their previous placements not being fit for purpose in terms of the environment, staffing levels and staff training.
“There is evidentially a gap for younger adult services and we are the answer to that.”
Exemplar Health Care point to the factors it believes are its USPs as being crucial to its expansion – its strength in effectively supporting those with behaviours which challenge; its high staffing levels; the fact it creates ten-bed units to promote small group living; its focus on community involvement and re-integration; and the provision of in-house therapy teams.
It also highlights the positive impact of its in-house Exemplar Positive Behaviour Support training which has been certificated by Bild ACT, and five of in-house leadership programmes which are CPD accredited.
“Our high staffing levels of registered nurses and health care assistants, and holistic approach to care, ensure that people get the right care, at the right time, the first time round,” says Charlotte.
“This reduces re-admissions to acute settings, facilitates faster returns to lower-cost community living and brings an end to the cycle of failed placements.
“We’re building more specialist care services across the country, to meet the growing demand for complex and high acuity placements.
“One thing that makes us different is that during the assessment process we do a ‘community fit’ assessment, as well as a care needs assessment.
“This ensures that the home is the right ‘fit’ for the individual, and that they’re the right ‘fit’ for the people who are already living in the home.
“We work closely with a number of CCGs and local authorities to understand the gaps they have, and involve them in the process to ensure that our new homes are fit for purpose and meet local need and demand.”
Such demand for specialist placements is something that continues to grow, which inspires Exemplar Health Care to increase the resource available to people badly needing such specialist resource.
“The number of children born prematurely or with other medical or complex conditions is growing,” says Charlotte.
“So, too, is the number of older people developing complex needs in later life. This is leading to an increase in demand for complex care services.
“High-quality, person-centred care for people living with complex needs often requires the support of a multi-disciplinary team, which involves registered nurses, health care assistants and other specialist roles such as clinical experts, psychiatry, physiotherapy and occupational therapy – as well as high staffing levels, an adapted environment and specialist equipment.
“This comes at a cost – but public sector funding is decreasing.
“These ongoing financial challenges can often lead to people being placed in an unsuitable or inappropriate setting, that isn’t able to meet their complex care and clinical needs.
“This can have a detrimental effect on people’s health and wellbeing, as well as the wellbeing of their family and friends. There is also a high number of people spending an unnecessary amount of time in hospital settings due to the shortage of specialist nursing home providers.
“We find that a lot of people are placed out of their area as there is not enough provision for specialist nursing homes close by – when opening a new home in a new area, we often receive referrals to support service users being repatriated.”
The latest addition to the Exemplar Health Care portfolio is Blackmoor in Birmingham, a 30 bedroom home comprising three ten-bed units, which will support people living with complex mental health needs, including behaviours which challenge, early onset dementia and neurodisabilities.
Its Tolkien Unit is a ten-bed male-only community. It supports those living with complex mental health needs, neurodisabilities, complex physical health needs and behaviours of concern.
The James Brindley Unit is a ten-bed mixed community. It supports those living with complex mental health needs, early on-set dementia, brain injuries and neurodisabilities.
And the Bournville Unit is a ten-bed female-only community, which supports those living with complex mental health needs, neurodisabilities, complex physical health needs and behaviours of concern.
It adds further to the provision from Exemplar Health Care in the area, with two specialist nursing homes in Birmingham – Otterburn and Maypole Grove – and Bridgewood Mews and Parkside in Tipton.
While each home continues the provider’s overall commitment to delivering personalised care to each resident, the creation of each one builds upon the last.
“Each time we build a new home, we’re continually learning and enhancing the design of the homes, and we implement lessons learned along the way,” says Charlotte.
“At Blackmoor, we’ve implemented more energy efficiencies including under floor heating, LED and automatic lighting and all our new homes are fitted with electronic car charging points.
“A few months ago, we asked our service user council what enhancements they’d like to see in our homes.
“They fed back a range of suggestions including bigger bedrooms with more space for equipment, more communal living spaces, accessible outdoor spaces and a hydrotherapy bath – so we used this to adapt the design of our new-build homes, much of which has been incorporated at Blackmoor.
“At Blackmoor, the overall size of service user bedrooms and en-suite bathrooms has increased. We’ve also included lots of communal spaces such as a hub area with bistro/coffee shop set up, a salon including hairdressing back basin, Barber chairs and nail bar, a multi-faith room and a sensory room.
“There is also an assisted bathroom on each floor which has a hydrotherapy bath with sensory and spa-like features.
“All of our homes benefit from the same support from central services including clinical experts, behavioural support specialists, learning and organisational development, marketing, HR and recruitment support.”
Blackmoor is also another example of the role Exemplar Health Care’s homes play in their local communities, with the provider keen to make a positive impact.
“During the planning phase, we worked closely with the local authority and purchased seven new park benches for the local community,” says Charlotte.
“The home has also created over 100 jobs for the area, ranging from nursing and health care assistants, domestic, administration, catering and management positions. Our first new cohort will benefit from a unique four-week induction and training experience to ensure the staffing team are well prepared for our new admissions.”
Knowledge, understanding and empathy in dementia care
Staff at Elysium Healthcare discuss what award-winning dementia care training looks like
The Dementia Care Awards recognise and reward the first-class services, and very best people, who work in the field of dementia care. Through showcasing excellence and innovation, the awards celebrate the provision of outstanding care for people living with dementia.
At the 2020 awards, the team at Adderley Green Care Centre, in particular colleagues at Gladstone House, saw off high-quality competition from across the social care sector, to win the coveted Best Dementia Training Initiative 2020.
In this article, we meet two of the main therapists from the team behind the training, psychology lead Dr Darren Perry and physiotherapist Damien Humphreys. We discuss why dementia training is so important, what good dementia training looks like and the positive impact that it has both on residents and the care team that support them.
Hi Darren, Hi Damien. Would you mind introducing yourselves for our readers.
Darren: “Hi, I’m Darren Perry. I’m a consultant clinical psychologist and psychology lead at Adderley Green Care Centre. Prior to being appointed by Elysium, I worked for 20 years in NHS neuropsychology, physical health and older adult mental health services. During that time I helped to establish and refine assessment and diagnostic pathways within older adult and young-onset dementia services. The consistent theme across all my clinical experiences has been a focus on psychological adjustment to changes in neurological and physical health.
“Working together with Damien and the team, we set out to develop a training package that would enable all our colleagues to feel properly informed about dementia and equip them to provide the best possible care for residents.”
Damien: “Hi, I’m Damien Humphreys and I am the lead physiotherapist at Gladstone House, Adderley Green Care Centre. I’ve worked in a variety of settings over the past 10 years in neurological rehabilitation and management of musculoskeletal conditions. I have a specialist interest in dementia.
“Alongside Darren and other colleagues I helped devise the dementia training so that all staff were confident providing care for residents, even if they exhibited challenging behaviour or had complex forms of dementia.”
Thanks both. Let’s start at the beginning. Can you tell us more about your award-winning training?
Darren: “The training is really comprehensive. The first section looks at the functions and organisation of the brain. We then focus on how the main types of dementia disrupt the normal functioning of the brain and how this underpins the emotional, cognitive and behavioural changes that people affected by dementia may experience.
“We wanted to provide a good foundational knowledge whilst pitching the training at a level that engages all staff. We feel that it is important for staff to understand that changes in the brain, which are beyond the control of the individual, are a key factor in most of the difficulties they face.
“An awareness of how neurological decline might affect any one of us if we developed dementia is crucial in helping staff to de-personalise challenging aspects of behaviour and encourages empathy as a starting point in all the care interactions they deliver.’
“In the afternoon session, we build on this theoretical knowledge by focusing on the technical skills needed to provide excellent care for people with dementia. We draw on experiential learning exercises to really emphasis the core principles of care provision that we aim to instil in all our colleagues.
“We wanted the training to be as comprehensive as possible so we run it over the course of a full day. Setting aside that amount of time is quite unique and not always possible for other dementia care services, but at Adderley Green it something that we have prioritised and both residents and our team are seeing the benefit of it.’’
So in addition to being thorough and providing in-depth knowledge, what else do you think stands out about your training?
Damien: “We take a dynamic approach to learning and include numerous exercises and activities in our training. I think that if you want participants to actually put the training into practice when they’re on the units supporting residents, then you need to make sure the learning can be applied practically and isn’t just words that stay on the page.
“Our training includes interactive sessions throughout the day, ranging from icebreakers to trust-building exercises and group tasks. When training is a shared experience between the attendees, with higher engagement levels, then more information is retained. They can connect more with the material and are more open to learning.”
I imagine that is particularly important for team members who are new to care?
Damien: “Yes exactly. Many individuals who are new to care don’t have prior experience of supporting someone living with dementia and often only have limited understanding of how the condition affects a person’s capacity to complete daily tasks.
“To help team members improve their knowledge and develop empathy for how day to day experiences are impacted by dementia, the training also includes a sensory deprivation exercise, which uses aids and specialist equipment to reduce a person’s sensory capacity.
“Participants wear gloves to inhibit their sense of touch and tactile experience. They use ear defenders to reduce their hearing levels and special goggles to limit their vision. We also get them to wear particular shoes that are difficult to walk in and will then ask them to complete the simple functional task of putting on an item of clothing, like a jacket.
“We then follow this by asking a care worker to support them to complete another functional task without telling the participant what that task is. The care worker in this scenario then assists the participant to go and make a drink at a nearby table.
“It isn’t possible to fully replicate the effects of dementia but by withdrawing much of the sensory input it can give team members some understanding of the difficulties that our residents may face. The purpose of the exercise is to demonstrate the importance of empathy and how we can use that to regulate our own emotions or feelings in sometimes challenging scenarios.
“We get lots of positive feedback from the participants about this particular exercise and it seems to have an impact on people.”
And what have been the benefits of your training for staff?
Darren: “We find that the more knowledge and awareness our team have of what is happening for the individual, the more confident and compassionate they are in providing care.
“For example, people living with dementia often experience difficulties creating memories for recent events and this leaves gaps in their day-to-day awareness. They might make sense of the here and now by drawing on autobiographical memories from the past to fill in the gaps in their understanding. So, for instance, an individual may think that they have to go to work when they awake in the morning, despite having retired many years ago. If a carer confronts them too abruptly with the reality of their current circumstances, this can add to their confusion and anxiety.
“After completing our training, participants understand the need to be careful and considerate with their communication so they do not cause unnecessary distress for the person. We encourage them to acknowledge and validate the emotion that the individual is experiencing and then attempt to engage them in conversation. In our example, they would start with a conversation about the person’s previous occupation and gradually evolve this into a wider discussion about their past life. The individual can often be diverted away from their initial anxiety and gently refocused on aspects of the here and now.”
So it requires a more flexible, empathetic approach?
Darren: “Yes that’s right, and to do that I think there are three main factors to consider. First of all we encourage our team to get to know each person that we support as an individual and understand that they have unique needs that are specific to them. Everything we do should be person-centred.
“Secondly, we think about stepping into their shoes, putting ourselves in their place and understanding the world from their point of view. This is particularly important if we are supporting individuals who exhibit challenging behaviour. Yes, the physical behaviour can be challenging to the care professional but we ask staff to flip their thinking about challenging behaviour around.
“Rather than see themselves as the person being challenged by the particular behaviour, they should view the behaviour as an indication that the person with dementia is feeling challenged by some aspect of their circumstances or environment and this is their only effective way of communicating their frustration or distress.
“This perspective, coupled with their greater understanding of how dementia affects cognitive, motor and sensory functioning makes colleagues less likely to respond negatively to the behaviour and allows a calmer and more caring attitude.
“Then finally, we advocate an engagement-focused approach which adapts all activities to the appropriate level of stimulation and interaction for each individual. It is vital that colleagues are adaptive and tailor their communication style and their overall approach to suit the cognitive, communicative and sensory-motor level of the dementia-affected person.
“The three factors we emphasise are interconnected, hence the more we get to know a resident, the easier it becomes to understand their behaviour in context and the better able we are to find activities that will be personally meaningful and more engaging for them. This means that whatever we are doing we always place the needs of each person first and our overall aim is to support their sense of wellbeing.”
It’s clear that the training has a really positive impact both on participants and the people that you support, so how did it feel to win the award?
Damien: “It was a fantastic feeling when they announced that we had won the award. We are all passionate about providing the highest level of care that we can for our residents. It was very much a team effort and a lot of time and energy was invested into making the training interactive and engaging for the participants. We are all very proud of our achievement.”
Darren: “We would also like to thank Ronan Flood, Elysium neurological training manager, for his input in the early stages. He really helped us to think about the way training is delivered in order to make it as interactive and easily digested by the participants.’’
And to conclude the interview, do you have any thoughts about how you might develop the training in the future?
Damien: “Following the success of the dementia awareness training we have plans to employ the same approach for a brain injury awareness training. We hope to support our colleagues to provide the same flexible and empathetic approach by providing the knowledge and skills to care for people with brain injuries.”
Darren: “I think the award prompted us all to feel an even greater sense of ownership and investment in the dementia training. We regularly review the package after we have delivered it and make minor adjustments and additions to it. In this way, we feel we are honing it and keeping it fresh which helps us to stay actively engaged each time we deliver it.’’
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