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Opinion

Paediatric patients experience the power of music therapy

Jessie’s Fund teamed up with Chroma to deliver music therapy to paediatric patients in York Hospital, as music therapist Steven Lyons reports.

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Music has the power to evoke emotions, to inspire and to motivate. Music therapy is a form of psychological therapy using music, sound, instruments, and music technology to support people to make positive changes in their lives. It engages and supports children and adults alike, with a range of psychosocial, emotional, medical or behavioural issues.

With this in mind, York-based charity ‘Jessie’s Fund’ kindly funded a yearlong project to bring music therapy to paediatric in-patients at York Hospital. The service offered music therapy to children staying in York Hospital and the project was supervised by clinical psychologist Emma Peakman.

The project, which ran in its present form until early June, benefited children who may not be able to, or do not wish to, communicate verbally by promoting and maintaining their emotional wellbeing.

What happens during music therapy sessions in hospital?

Small instruments can be used for activities such as exploring different sounds, musical introductions and rhythmic turn-taking giving children and families a chance to do something whilst they are awaiting news from the doctors about how long they will be staying.

Music can also be provided to individuals and groups to stimulate or relax the patient using familiar songs at the bedside, to improvised music and psychodynamic techniques to help the patient understand their emotions.

The sessions explore the role of live music on ward, facilitating open group, offering individual sessions and mentoring music volunteers.

Why is music therapy so Important to children and their families?

For children, coming to terms with a diagnosis can be difficult as can putting into words how they are feeling about it. Music offers children in this situation a way to help process and deal with their emotions. The same too can be said for the families of the child, which is why families (more often than not) are included in the sessions. A diagnosis can put pressure upon a family when a child has a medical regime to follow and music therapy provides an outlet.

Music has the power to transform lives and help children deal with their emotions whilst helping them to understand their health condition and situation. The music therapy project within paediatric psychology has provided children and their families with an alternative and creative musical medium to express and manage emotions, whether this is in a short-term in-patient setting, a planned piece of more long-term intervention, or within a group.

It has benefited children who may not be able to, or do not wish to, communicate verbally by promoting and maintaining their emotional wellbeing. This holistic approach in paediatrics, which values both physical and emotional health care greatly benefits patients and their families.

Music can transform lives and the need for non-verbal communication outlets for children who find verbal communication difficult, means music therapy is invaluable. Its ability to help children and their loved ones process and manage their emotions following diagnosis, helps provide more understanding between loved ones whilst helping all involved to accept diagnosis.

This project may be the catalyst to fuel more projects in and around the UK just like this one.

Steven Lyons is a registered music therapist at Chroma Therapies.

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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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