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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

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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Insight

‘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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‘This isn’t a threat – it’s an opportunity for revolutionary change’

Writing for HT World, Brian O’Shea, continuing healthcare advisor at the Spinal Injuries Association, urges commissioners to embrace change for the good of the patient.

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As a service user and patient advocate, I believe it’s important to always consider the patient perspective of going through the NHS Continuing Healthcare (CHC) process.

I think it’s important to recognise that when people encounter the CHC or local authority assessment process, it is more often than not the first time that they’ve engaged with the health and social care system.

This usually results in an overwhelming experience for patients, or their carers, as they have so many questions about the process.

It can therefore appear to CCG or CHC advisors that patient questions don’t really arise in a logical flow or sequence. They will often ask questions as they emerge in their minds, for example, “How does this thing work and how can I make sure my voice is heard?

What’s happened so far in the process? What happens next?” However, the most frequently asked question about the process is, “Who can I speak to?”

Brian O’Shea

It is really important to think of this experience not only from the individual patient’s perspective but also from anyone who is working with them to get through it, whether that is an advocacy organisation such as SIA or simply an interested relative.

Quite often when a patient or their relative contacts us, we start to ask them what we think are simple questions: Where are you? Have you had a check list done?

Have you had a referral made? However, as it is often their first experience dealing with the health and social care system, they just don’t know the answers.

Using a patient portal

Previous NHS CHC improvement initiatives have focused on answering this question by allocating a case worker to take individuals through the end-to-end NHS CHC process.

However, we know that this falls down because the individuals managing the process leave the NHS organisation handling the individual’s application, or there is a change in the contact details of the CCG etc.

And there are many more factors and variables that can disrupt the communications between the individual and the CCG, leaving the individual in the maze or even worse, just in the void.

And so, I think digitisation in this area of healthcare delivery is tremendously exciting.

I think that, through the trials of the last year, we have seen how empowering the move over to digitisation can be across the whole of the health and social care sector – when it is done properly.

In this spirit I see a patient portal as a potential solution to many of the questions the CHC process brings up for both patients and CCGs.

We once asked as an industry, “How do you address the issue of having a dedicated individual to take the patient through the assessment and care plan process from end-to-end?”

Well, the answer may just be that you don’t actually need an individual to take the patient through the process, maybe that can be achieved by a digital platform.

There is also a growing awareness amongst patients of the amount of personal information the NHS holds.

I think that one of the advantages of the patient portal on the digital platform, particularly demonstrated in the Digital CHC by IEG4, is that the CCG can make the data more transparent to patients and families.

Sharing the assessment information and the discussions from the MDT meeting builds trust in the process and ensures that patients and families are at the heart of the CHC decisions.

However, having a patient portal is not necessarily throwing open the doors and having absolutely no control of the information between the patient and the heart of the NHS. It is more about understanding the information that an individual needs to generate trust in the NHS CHC assessment process.

As advocates we recognise that, for some patients, if you gave them access to everything it could be just as overwhelming as not giving access to any information. So, it is important for the CCG to build flexibility into their digital platform and strike the appropriate balance for each individual patient.

An additional advantage with a digital platform, is that you don’t have to wait for 9-5 office hours to get an answer to your questions, you can access the information yourself at a time to suit you.

The platform can answer the questions of who has already been involved and who is going to be involved, what the next steps are, and it can also keep track of what’s already been done. No chasing telephone calls taking up time of health and care professionals and an ability for patients and family members to take control.

The Future’s bright, the future’s digital

The path to the digitisation of healthcare services has not been straight forward, and there is still some work to be done in ensuring that safety sits atop the agendas of CCGs when it comes to its adoption, however seeing how platforms like IEG4 take steps to improve this is encouraging.

Both as a patient and as a patient advocate, I cannot tell you how excited I am about the move to digitisation of Continuing Healthcare.

I honestly think it has the potential to be revolutionary.  I think that when used appropriately by CCGs it could be a revolutionary step forward in the quality of decisions made, in the amount of time that it takes to make decisions and it has the potential to be revolutionary for the individual patient experience of the NHS CHC assessment process.

I would really encourage CCGs and local authorities not to see it as a threat. To me it is just such a great opportunity and I think it is really pivotal in changing how we engage with Continuing Healthcare.

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