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Community rehab

‘SLT took on even greater importance during lockdown’

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“It’s a balance between reducing contact to keep people safe, and maintaining contact to keep people safe."

Through community speech and language therapy continuing even during the height of lockdown, many patients received a “massive boost” from the progress being made in regaining or maintaining their communication and swallowing abilities.

While many therapies were stopped or conducted remotely, speech and language therapy (SLT) continued in-person throughout the pandemic, supporting people in their recovery from brain injury or stroke, as well as working with those with progressive neurological conditions.

“With there being a complete hold on a lot of NHS therapy during the first lockdown, speech and language therapy was very important to so many people, so to be able to progress in that area was a massive boost during a difficult time,” says speech and language therapist Jennifer Benson.

“For many patients I saw, they felt that there was so much focus on COVID they had been forgotten – but to have a voice is such a fundamental part of life, and for a lot of patients, particularly those with progressive conditions, it can’t wait.

“It’s a privilege to be able to support people with this, but particularly to be there for them during the most trying times.”

The continued intervention of SLT during lockdown helped many patients significantly – but for therapists, their role was frequently, and unexpectedly, expanded with the cancellation of many other community services.

“We were finding we’d be going to people’s houses and our role was broadening, we’d need a double appointment to help get through the other issues they had and trying to offer support,” says Jennifer, who worked in both private and NHS roles across Yorkshire and Lincolnshire during the pandemic.

“As speech and language therapists, we are very clear on our role boundaries, and we’re very keen to work with our MDT colleagues, but during those times we had to become used to dealing with things like recognising when a person needed end of life care, and supporting families when GPs weren’t coming out to see them.

Jennifer Benson – speech and language therapist

“One case that really stands out was one gentleman with some early signs of Parkinson’s, he’d had a telephone appointment with a neurologist but nothing else.

“He’d then had a repeat prescription from his GP with some Parkinson’s medication on it. He queried it, saying this isn’t mine, but then got an email telling him he had Parkinson’s disease. He and his wife were in total shock.

“In ordinary times, there would be Parkinson’s nurses visiting to pick up on that, but in the absence of face to face appointments, SLTs were in a position of needing to offer more support and information about Parkinson’s in general. We know our stuff and we’re good at explaining things simply to people, so it was a natural extension of our skills.”

Against a constantly-changing situation during the pandemic, assessing the need for visits against the safety factor of not doing so, was a fine balance.

“All through the pandemic, face to face appointments have been risk assessed, and SLTs all over the country have risen to the challenge of using teletherapy when this has been the safer option,” says Jennifer.

“It’s a balance between reducing contact to keep people safe, and maintaining contact to keep people safe.

“Very often our swallowing assessments and interventions would be helping to prevent a hospital admission, so we were also doing our bit to keep people at home and prevent more strain on the hospital system, and keeping them out of the way of potentially catching COVID in hospital too.”

Jennifer, who has more than 20 years’ experience in the field, continued her appointments using PPE for the benefit of the patients who needed her.

“I became used to wearing a surgical face mask, plastic pinny and gloves, even though the mask made communication so much more difficult. I had a boot full of this equipment and many a day had to battle the North Sea wind while putting my pinny on!,” Jennifer recalls.

“But it was all such an unknown, and people were needing to be seen more than ever, very often I was all they had, so you just get on with it.

“It was only when I got my first vaccine that I realised what a relief it was. Working in the community, you rely on people reporting symptoms and of course many cases are asymptomatic. You have to hope your PPE really does keep you and everyone else safe.

“There were care homes I was in which had outbreaks two days later, and you maybe do think about your own safety, but I think it’s only on reflection you realise how anxiety-provoking it really was.

“I’m very pleased I have so many years of experience, I’ve seen a lot of things, so that helped me to get through that time – for those who were new to it, it must have been very hard.”

Community rehab

Finding a voice for Richie

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With the #avoiceforrichie campaign to enable Richie Cottingham to have his own voice capturing the hearts of the nation, NR Times meets the woman who made it possible – speech and language therapist Jennifer Benson

 

Having had the same vocabulary package for his communication aid since school, Richie Cottingham was well overdue a change. 

Being reliant on assistance with speaking from the earliest age, Richie – a 26-year-old with Cerebral Palsy – had become used to the generic ‘American’ accent he spoke with, not believing there could be an alternative. 

But as part of the change in his communication package – which came through an overhaul of his wider multi-disciplinary team – Richie met Jennifer Benson, his new speech and language therapist.

Experienced in voice banking and preserving the voices of people with neurodegenerative conditions by recording them, Jennifer’s thoughts for her new client turned to whether – in contrast to the more common technique of voice preservation – there could be the potential for voice creation. 

“Richie is a proud Yorkshireman and such a character with it, he’s a fantastic bloke, and I wondered whether we could give him a voice to call his own,” says Jennifer. 

“He has never had his own voice, and a voice is critical to a person’s sense of identity and heritage. In many regards, it’s as unique as a person’s fingerprints – but when Richie was around his peers who also used communication aids, they all sounded the same. Richie did not have the unique voice to match his uniqueness as a person. 

“So I suggested that we look for a voice which is more representative of him as a young man from East Yorkshire, and he loved the idea.” 

One email to their local BBC news later, and the sensation of #avoiceforrichie was born. Within days, Richie and Jennifer were appearing on local and national television and radio, capturing the hearts of the nation with their search for a voice donor to give Richie his own voice for the first time. 

“It has been amazing, Richie has stolen people’s hearts and has had so much media attention. He is such a fantastic character and always laughs at me for getting nervous before our interviews,” says Jennifer. 

“In many ways, being on the radio has been even more meaningful than being on TV – there is no reason someone with a communication aid can’t speak on radio, but it so rarely happens. Richie is breaking down barriers and showing what’s possible.” 

From their appeal, 35 men came forward volunteering to donate their voice, which Richie has now finalised to three. SpeakUnique, the voice banking partner Jennifer has worked with for several years, is now creating three blended voices from which Richie can make his final selection. 

“When we started getting the videos through, it quite restored my faith in human nature, people were saying such lovely things and really recognised the importance of this to Richie,” says Jennifer. 

“The importance of having a voice is perhaps something people haven’t thought about before, because if you’ve never been in the position where you don’t have the ability to speak and are locked inside your head, then you could never know. But from listening to Richie, people have been inspired to act and that is so lovely. 

“Richie listened to the voices at first and rated them out of ten, and then watched the videos of the people talking and he rated them again. He went with his gut feeling on his choices, but I was really interested to see that with the videos, he went for the people who came across as the jolly, cheeky chappies – people I think he saw as representing his sense of humour.

“SpeakUnique usually create a voice from two voices blended together, but Richie just couldn’t narrow it down beyond three, so they’re doing three varieties for him. It won’t be long now until Richie has his voice – that will be an amazing moment.”

While this project will have a life-changing impact for Richie, Jennifer hopes that other speech and language therapists will follow her lead and embrace voice banking – both for this type of work and for people with neurodegenerative conditions in ways they previously may not have done. 

“This technology is there and we should be using it, but there is quite a bit of fear that still exists,” says Jennifer. 

“While there seems to be a preconception that it’s high-tech so therefore you need to be an IT expert to use it, it really isn’t like that – I’m certainly no technology expert and it’s a really simple process. 

“The search for a voice for Richie has taken on a life of its own but has turned into a really amazing shared project for us both, and has given me a real depth of relationship with Richie with so many more opportunities for communication.

“Using this technology is nothing to be frightened of and my biggest hope from what we’ve done over the past few weeks is that it can break down barriers around its use.” 

For more information on voice banking, visit www.rcslt.org

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Community rehab

Showing young people what’s possible

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Young adults with disabilities are being supported in understanding and articulating their feelings, enabling them to increase confidence in themselves and their abilities, through a new innovation from two specialist neurorehab providers. 

MyAbility was developed to enable young people to better understand their disabilities and express themselves, while allowing parents and carers to learn more about ways they can support them in doing so. 

Aimed at young people with conditions including Cerebral Palsy, brain injury and autism, MyAbility has devised a 14-week pack tailored to the needs of the person involved and written in an accessible and engaging manner, alongside an accompanying parent or carer pack. 

Among the MyAbility initiatives is MyAbility Reflection, which gives the chance to focus on their abilities rather than disabilities, and reviews their aspirations from the start to the end of the period. 

The project, created by ATtherapy and Recolo, has recently completed a pilot study, with strong feedback attesting its effectiveness in supporting the emotional needs of young people. It is set to launch later this year. 

MyAbility was the brainchild of Francesca Sephton – a highly specialist speech and language therapist at ATtherapy, who works with children and young people with severe speech limitations – who realised the many questions they had, but were often unable to ask. 

I was working with a number of teenagers with Cerebral Palsy and they were given the communication tools to be able to successfully articulate themselves. While they did have a good level of understanding, they weren’t able to express themselves without the use of technology,” she recalls.

“They had so many questions, such as ‘Why do I have Cerebral Palsy?’, ‘Will my disability go away?’ and ‘Why am I different to other people?’. 

“There were lots of questions about their disability that had never been discussed or responded to in an inaccessible format, but nothing was available for the young people on my caseload to discuss their disability in a comprehensive, accessible way.  

“It’s quite a complex thing to explain, and might not be something they had ever discussed in this way with their parents or carers, but they really needed to know the answers to these questions.

“We also talked about their aspirations and what they wanted to do in their lives and careers, so I wanted to show them what was achievable and reflect positively on their abilities.” 

From there, Francesca realised the need to create something new and specific for this age range –  “there were books for children which had characters with disabilities, but nothing for my teenagers to answer their questions”. 

She approached Dr Andrea Pickering, consultant clinical psychologist at Recolo, a community neuropsychological rehabilitation provider for children, young people and their families, to work alongside her to develop the idea further. 

Recolo and ATtherapy set about creating MyAbility, to address the need for appropriate clinical resources to assist the young person to understand and adjust to their diagnosis.

“By creating these packs, we wanted to make something fun and engaging, but that would have the very important role of helping the young person and the parent or carer to work through questions they may have,” says Francesca. 

“There are some really important opportunities for young people to think about what they can do and who they are, while also understanding more about their disability.

“It’s been great to work with Recolo, and Andrea has been instrumental in the development of the packs, service delivery and the research and development.”

Emma Bowers (Highly Specialist SALT) and Niki Dutton (Highly Specialist SALT) were also key members of the MyAbility development team, with Emma developing the traumatic brain injury version and Niki designing the autism version. 

And following successful feedback, the team are now focusing on launching MyAbility later this year. A YouTube channel has already been created, to help pave the way for its release. 

“The feedback has been really positive, in that it confirms we are doing what we set out to do in supporting young people to talk and express their feelings, parents to have open discussions, and psychologists and speech and language therapists also said they found it very thought-provoking,” says Francesca.  

“We are continuing to develop and refine it, with a few tweaks here and there, and are really welcoming feedback from clinicians to ensure it is appropriate for both users, parents, carers and clinicians, and additionally to make this remotely accessible during the COVID-19 pandemic. 

“The full team are working hard ahead of our launch and we are so excited to share MyAbility, particularly with those young people and families who will benefit from it.” 

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Community rehab

Anthems help people re-learn to sing and dance

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The sessions had helped almost 250 dementia patients in care homes pre-COVID

Iconic songs are helping people living with dementia use their love of music to rediscover how to sing and dance.

The Music Makes Us! project combines singing and dance lessons with speech and language therapy and physiotherapy, and has engaged hundreds of people with dementia to use their love of music to re-learn lost abilities.

As well as seeing participants who couldn’t talk begin to sing to The Farm’s ‘All Together Now’, others with severe mobility problems began to dance to The Beatles.

Music is known to activate different pathways to speech in the brain, and not only stimulates endorphins but can transport people living with dementia to happy moments in their pasts.

And now, Music Makes Us! – which is run by The Brain Charity, and has been used to date in care homes in its native Liverpool – is being rolled out as a free 12-week online video programme, which can be used by individuals and groups anywhere in the UK or indeed the wider world.

“We understand the past year has been especially tough for people living with dementia, and we also know music can play a vital role in their daily care – it stirs memories and reduces agitation,” says Kym Ward, dementia project coordinator at The Brain Charity.

“That’s why we are delighted to be releasing this free, innovative music-based therapy series for people from anywhere in the world to take part in.

“Pre-COVID-19, our care home workshops were incredibly beneficial to hundreds of people across Merseyside living with dementia.

“It was truly remarkable to see first-hand how participants who had previously been non-verbal began to sing along, and those with severe dementia who struggled to engage with the world enjoyed moments of joyful connection with others through dance.

“So we hope these videos will give easy access to this fantastic resource for households, care homes and people living with dementia across the UK and beyond.”

The Brain Charity’s programme is made up of five Music Makes Us! Move workshops, and seven Music Makes Us! Sing classes – all set to familiar classic tunes by artists including Elvis Presley.

Combining dance and physiotherapy is proven to minimise the risk of trips and falls and help people living with dementia retain independence by increasing their mobility and maintaining balance and flexibility.

Blending singing and speech and language therapy also strengthens mouth muscles, improving communication and reducing swallowing and breathing difficulties.

Before COVID-19, these sessions were running in care homes and community settings across Merseyside and had already helped nearly 250 people.

Now, it is hoped the fact the workshops are digital means that level of engagement can be significantly increased.

Anyone who signs up will receive one email per week containing a specialist exercise video and guidance on how to join in safely.

Participants will also be able to consult with The Brain Charity’s speech and language therapist and physiotherapist about any specific issues faced.

There is another version of the programme for people who may benefit from its effects, but do not identify as living with dementia or have an official diagnosis.

The courses have also already been proven to reduce anxiety and improve wellbeing for both participants and their carers and relatives, against a backdrop of reduced dementia support due to COVID-19 – something which has had a huge impact on mental and physical health.

“During the lockdowns, The Brain Charity assisted with research studies which revealed being unable to access support service due to COVID-19 worsened quality of life for those affected by dementia in the UK,” adds Kym.

“So it is vital now more than ever that as many people as possible know about this free support – we have already seen its incredible benefits first hand.

“We hope this resource will be useful for loved ones at home, for residents in care homes and, when it’s safe again, for participants in community settings.”

To sign up, visit www.thebraincharity.org.uk/dementia

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