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Opinion

Hands on to hands off

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Five brain injury professionals spanning dietetics, case management, physiotherapy and speech and language therapy share what they’ve learnt from to shift to virtual therapy. 

At the start of the pandemic, many statutory rehab services were redeployed, and some independent therapy teams closed or therapists moved back into frontline work within the NHS and community.

A group of private therapists in the North West of England started keeping in touch on social media and in weekly group support sessions to share their fears and concerns, and identify the strengths that helped them survive in such challenging times.

They shared a desire to maintain a therapeutic relationship and meaningful rehab for their patients, all living with complex neurological conditions, while delivering remote therapy sessions online. This is what they – a dietitian, a speech and language therapist, two physiotherapists and a case manager with an occupational therapy background – learnt during that time.

Don’t Panic

As therapists and health care practitioners, our hands are often our primary tool; we use them to direct, feel, inform, instruct, measure. The inability to see our patients face to face took away these vital tools.

We knew we had to adopt a positive attitude of creativity, innovation, and practicality, and decided to continue as much as was practically possible, albeit remotely.

The pandemic thrust us into a new world where we soon learnt that we have a wide range of diverse skills beyond the use of our hands – as educators, problem-solvers, movement and task analysts, communication specialists and counsellors.

For some of us, the beginning of the COVID-19 pandemic saw a reduction in caseload by up to half, which affected morale as we tried to manage personal and professional stress and anxiety. For others, our case load dramatically increased as we maintained routine and aimed to prevent safety concerns around swallowing and malnutrition.

Working remotely by virtual platforms has required therapists to re-evaluate their roles and responsibilities and redesign pathways of rehab, all without a guidebook and almost overnight.

Sharing the challenges we were facing enabled us to embrace the new era of therapy provision, ensuring that a calm, professional and positive approach paved the way as we guided our teams and patients through what would become months of change.

Embrace core values

As we continued to meet regularly, we began to understand we were united by our shared views and values regarding duty of care, therapeutic relationship and safe and ethical practice.

Our common commitment was our duty of care to providing continued therapy input to our patients. We could develop novel approaches to practice quickly to reduce negative impacts on clients’ physical and mental wellbeing.

As independent health providers, we were able to rapidly try out new service delivery techniques and begin to rebuild a new virtual therapist identity to ensure ongoing rehab, delivered in a safe and realistic format.

One of the key factors enabling our speedy response was not being tied to a specific platform. Recognising the frustrations technologies can cause, however, administrative team members assisted families to ensure an effective technology connection to avoid this impacting on the therapeutic relationship.

The freedom of being at the helm of smaller, independent practices placed us in a position to respond quickly and invest time and resources into developing a new way of working, but this was not without financial risks. Our weekly group meetings helped identify the need for a supportive framework for professional staff to share and explore what we meant by ethical and safe practice.

Be innovative, creative and dynamic

Therapy is not a desk job, it’s active and engaged. Teams invested time working out the positioning of devices and how to use selfie sticks to ensure the optimum viewing angle.

We taught relatives and support workers techniques and assessment tools separately to the patient to ensure that they understood their responsibilities in the session. During physiotherapy, people reportedly became used to observing themselves on the video link, so they could see what the therapist meant when they were talking about making postural changes.

In dietetics, the continued use of eHealth communication apps maintained frequent dietetic communication, giving real-time feedback, accountability and encouraging confidence, control and mindful eating.

People working on developing their speech sounds or breath support had automatic feedback as they could see themselves on screen and could work to imitate lip patterns and breathing techniques as modelled by the speech and language therapist.

Our aim was to safely maintain and progress rehab goals while encouraging routine, structure and preventing development of new issues. Some have surpassed expectations and are continuing to make significant gains and progress. This in part is due to the adaptability that online delivery presents.

During a face to face session, we often have a fixed time period. However, through virtual sessions, we can be more adaptable to personal wants/needs, breaking sessions up into ‘bitesize’ chunks. This can assist people with limited attention or difficulty processing and is helpful in fatigue management.

Nevertheless, online therapy does not work for everyone, and many people and their families miss face to face input and support. Some people find multi-tasking prohibitive, some can find technology intimidating. Others find it difficult to follow the conversation, particularly where they are more dependent on non-verbal cues, or are challenged attentionally when people speak over each other.

We need to consider how we can embed online therapy in our routine practice; for who online therapy presents opportunity and for who it may create challenges.

Assessment of new clients was restricted. Many of our clients pose non-obvious difficulties. Assessing how a person interacts with their environment can be difficult, and it can be difficult to form that initial relationship which is key to good neurorehab.

Bridging a gap

During the pandemic, many people reached out to connect with us remotely. For others, the services they needed altered. We have seen an increase in dietetic referrals, perhaps due to reduced gym, and community healthcare provision.

The use of eHealth and virtual therapy has meant we were able to bridge the gap, ensuring minimal disruption to rehab through remote transfer of therapy skills, including educating and training other household members and support staff.

This training is a key part of our roles and online support, and voiceover Power Points and videos of ourselves disseminating information have been important. Attending a session virtually can empower both the person, the family, and their support teams. It can provide a positive forum to educate staff and monitor learning across the whole team.

Some support staff and families reported feeling more empowered during lockdown as they had clear connections between the therapy input and the person.  We were able to bridge a gap for those who were able and willing to engage and found a new tool to add to our repertoire.

Forward-thinking and planning

As we move out of lockdown, our teams have reflected that remote therapy via video link is possible, but isn’t always preferable. The challenge will be to develop a hybrid system that puts the patient at the centre of their rehab.

Remote therapy via video link happened in a unique bubble and in response to a crisis and it is unclear at this stage how these external factors impacted on the success or otherwise of virtual rehab.

Used well, the barriers of geography and travel could enable specialist therapists to support local therapists to provide effective rehab for those with complex conditions. There is also more opportunity for therapists to benefit from ease of access to international perspectives and training resources that are rapidly developing online.

As we are returning to increasing direct engagement, we are facing the new challenge of working in and communicating in PPE, which introduces challenges in establishing and sustaining a therapeutic relationship.

Embracing change

This period has been challenges for therapists. However, we have learnt together, along with the people we support and their families, and want to make sure these learnings aren’t lost.

Virtual therapy spaces present an opportunity for us to provide services across longer distances and in diverse and flexible ways, that, for some, may enhance progress toward their goals. For the foreseeable future, while therapy services are resuming face to face intervention, there will likely be a continuation of some remote methods.

Physical distancing and personal protective equipment will likely present new learning for us, and requires ongoing reflexive practice as we continue to grapple with the shift from ‘hands on’ to ‘hands off’ service delivery.

We have seen that people are increasingly deteriorating; both physically and mentally, and the novelty of remote therapy becomes less effective as it becomes increasingly obvious that we are hands-on for a reason. As humans we need the subtle combination of touch, communication, concern, community, movement and freedom to keep us well.

This article was collectively written by:

  • Jackie Dean, case manager at n-able Services Ltd
  • Ann Pimm, physiotherapist at Summerseat Physiotherapy
  • Hayley Power, speech and language therapist at A.T Therapy
  • Sian Riley, dietitian at Red Pepper Nutrition
  • Susan Pattison, physiotherapist at SP Therapy Services

Dementia

Person-centred dementia care during the COVID-19 pandemic

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The COVID-19 pandemic has presented unique challenges for people living with dementia, as well as for those who support them. Tracey Carter, senior quality manager (dementia care) at Exemplar Health Care, shares how colleagues across the company have found innovative ways to support people living with dementia to stay safe and well, and uphold the principles of person-centred care

 

It’s vital that health and social care workers, other professionals and family carers continue to take a person-centred approach to care during the pandemic, to support people with dementia to maintain, and enhance, their health and wellbeing. 

Putting people first

There are currently around 850,000 people living with dementia in the UK, each with their own unique personalities and life stories. Everyone will experience the pandemic and its effects differently, which is why it’s important to maintain a person-centred approach. 

Tracey Carter

At the start of lockdown, care homes were cut off and isolated from the wider community which posed a significant shift for service users and care workers. 

In response, we quickly adapted many of our ways of working, systems and processes to adhere to national guidelines and safety policies.

However, when it comes to our approach to care at this time, there’s not a ‘one size fits all’ approach. 

We adapted and adopted a creative approach to ensure that the same quality of person-centred care was achieved with lockdown restrictions in place.

To achieve this, Exemplar Health Care divided its approach into four key areas of need. 

The needs of people living with dementia 

One of the most important things for us was to identify how each individual communicates pain and discomfort, so we could monitor them for signs of Coronavirus (COVID-19).

Some older people living with dementia may have different symptoms or are unable to communicate when they are experiencing one of the common symptoms of the virus.

We provided training to support our care teams to look for signs that might indicate that people have the symptoms of Coronavirus (COVID-19), such as changes to their personality or everyday behaviours. 

We also assessed potential communication challenges, like the use of full PPE which could frighten or upset people living with dementia, and continue to work with individuals and their loved ones to ease any stress. Some examples are wearing a name badge and photo on clothing, using drawings or written words to communicate and playing music to aid relaxation. 

Combatting loneliness

Combatting loneliness has been a huge priority during the pandemic. At Exemplar Health Care, we’ve kept the same colleagues working on our units so that people are supported by a consistent team who know them, which is fundamental to person-centred care. 

Our teams continue to be creative in supporting people to take part in meaningful activities and engagement in our homes – including doing everyday living tasks such as laundry and cleaning to give people a sense of familiarity, routine and purpose. 

Where possible, we’ve brought the outdoors inside when people are not able to go out. For example, our activities teams have supported flower arranging or plant potting inside, as well as creating indoor beaches, to support people to maintain their hobbies and interests. 

We’ve also made good use of technology during times of lockdown. At the beginning of the pandemic, we purchased iPads for each of our homes which have enabled residents to stay in touch with their loved ones, as well as provided opportunities for meaningful activity, such as virtual tours of tourist attractions or playing music. 

The spaces in our homes have always been personalised to the people we support, with decorations, photos and posters tailored to their interests – this became even more important during the pandemic, as maintaining interests became key to combat loneliness and frustration. 

Family/loved ones’ needs 

Families have found it incredibly difficult not being able to physically see and be with loved ones during the lockdown period. 

Throughout the pandemic, we’ve supported people to keep in touch via video calls, using systems such as Skype and Zoom. 

When visiting was permitted, we implemented individual risk assessments to support safe visits, outlining what support individuals might need during visits. We also made all the efforts to ensure that visits happened when people wanted them. 

Several of our homes have assigned a new Family Liaison role, whose responsibility is to keep in touch with family and friends, and facilitate communication between service users and their loved ones.  

Multidisciplinary team needs 

Teams across the company, and externally, have utilised tools such as Skype and FaceTime to carry out assessments and discuss people’s needs to ensure that we can continue to provide high quality care during the pandemic. 

Where safe and appropriate, we’ve allocated in-house specialists, such as quality managers and trainers, to specific homes so they can support colleagues without travelling between homes. 

We have continued to work with external teams, such as community nurses and palliative teams, throughout the pandemic to maintain standards of care.

We’re also working as closely and pre-emptively as we can with local GPs and other community-based services who are no longer able to make face-to-face visits to homes, to see and assess residents virtually. 

Support for colleagues

Care work is extremely rewarding, but can be inherently stressful. The pandemic presented unique challenges to colleagues, taking a toll on everyone’s wellbeing.  

Knowing that colleagues who are well, happy and engaged are more likely to provide quality care, Exemplar Health Care implemented a ‘We Care’ package to support colleague wellbeing. 

We started working with a new Employee Assistance Programme partner to provide colleagues with 24/7 support from a team of trained counsellors, as well as growing our team of in-house Mental Health First Aiders. 

Our specialist dementia quality manager has continued to work with each home to provide training and identify the best ways to support residents living with dementia during the pandemic, so that we can continue to uphold the principles of person-centred care.

This has been supported by short online videos and an enhanced eLearning schedule, so that we can continue to ensure that colleagues feel supported, and have the right skills and knowledge to maintain standards of care, despite the challenges of lockdown. 

About Exemplar Health Care 

Exemplar Health Care is a provider of specialist nursing care for adults living with complex and high acuity needs. 

Our community-based homes provide person-centred care and rehabilitation that focuses on maximising independence, building everyday living skills and empowering people to live as fulfilled lives as possible.

We have over 30 homes across Yorkshire, the Midlands, North East and North West. 

Read more about Exemplar Health Care.

About Tracey Carter

Tracey Carter is a senior quality manager (dementia care) at Exemplar Health Care. She’s responsible for ensuring that Exemplar Health Care’s 32 care homes have dementia-friendly living environments and that colleagues receive the right training to be able to support people living with dementia in a person-centred way. 

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Insight

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

–       To appreciate the stillness and tranquillity of silence

–       Spending time alone and reflecting is so peaceful.

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

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

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

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

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

Signed

A rehab professional attempting to rehab herself.

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