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
‘We don’t want to rescue veterans – we want to support and empower them’
Help for Heroes has become known and loved throughout the UK for its central role in supporting injured service men and women rebuild their lives as they return to civilian society. NR Times speaks to its head of clinical services, Carol Betteridge, to find out more about its life-changing work
When service men and women sustain injuries – whether physical or psychological – frequently a main supporter in their recovery is Help For Heroes.
The charity has supported more than 25,000 people to date, including those who have sustained some of the most serious, complex and life-changing injuries imaginable in conflict.
Currently, the charity is working with 21 of the most critically injured UK service personnel in supporting them to rebuild their lives as people with complex injuries in a civilian world.
And enabling them to move on with their lives is what Help For Heroes is committed to achieving, enabling access to the bespoke support and rehabilitation they need to do that.
“We work with veterans with injuries of all kinds, including the most serious neurological and complex injuries and amputations,” says Carol Betteridge, head of clinical services at Help For Heroes.
“We try and help veterans get back to normality. It’s difficult when you leave service anyway, but with an injury as well, you can lose a lot of confidence and not want to socialise. We want their lives to be the best they can be, although it might not be the life they had planned.
“We don’t want to rescue people – we want to enable and empower them, and that’s really important to us, that they are in charge of what happens to them and have the decisions over their goals. That in itself helps.
“We’ve got veterans who were injured ten years ago and we’re still supporting them, so we regularly support people for the long term. We’re not here to replace statutory services, or the NHS or someone’s GP, but we can help liaise between them.
“It’s a huge difference when coming out of the forces, when you have your housing, medical and dental care all in place – but then you leave and that ends too.
“If someone has been very seriously injured, then the MoD might help with housing adaptations or in buying some specialised equipment, but it’s an ongoing situation, and there may need to be further adaptations later on, or their needs may change – it’s about providing the right support at the right time, and that’s where we come in.”
In addition to the complex life-changing physical injury support offered by Help For Heroes, psychological support for veterans is equally important.
“Most members of the armed forces have a very robust ethos through their military training which helps them to get through the difficult times, but for some they need more extensive support,” says Carol.
“Mental health has always been a very big concern for our veteran community. In some cases, they may have lost friends through the circumstances which caused their injury, and to see your friends lose their lives in circumstances of conflict far from home has a huge psychological impact.
“The hidden wounds of our service men and women can be very deep, and we’re absolutely here to support them in dealing with those.”
To enable Help For Heroes to support its veterans as best they can, they have established their own in-house case management service, with support from AJ Case Management.
“We had a team of welfare key workers within Help For Heroes but we realised that veterans were sometimes being bounced around from place to place when seeking external support – so we decided to up-skill our existing welfare workers to work as case managers, so we can help our veterans directly to achieve the outcomes they want,” says Carol.
“AJ Case Management were great in helping us to up-skill our team in this way, and we can now work as part of Multi Disciplinary Case Conferences to case manage our veterans’ situations. It was a very good piece of work and one that is making a big difference to us.”
As with every charity, Help For Heroes has keenly felt the effects of the pandemic. Online sessions have become the go-to over the past year in place of traditional face to face meetings, and financial resources have been redirected to ensure its frontline support can continue for the veterans who need it.
Its Recovery College courses – designed specifically for wounded veterans and families to help them identify their ambitions and gain the confidence, knowledge and understanding to achieve them – have also been taken online, enabling the empowerment they offer to participants to continue unaffected by the pandemic.
“The past year has undeniably been difficult but we’ve maintained the support during the pandemic for our veterans who need us,” says Carol.
“Every day, five members of the armed forces are medically discharged. Not all of them need our support, but it can be hard to transition into civilian life and if they need our support, we’ll be there.
“We’ve mainly adjusted from face to face to virtual meetings, but if we’ve felt it’s needed and there has been consent, then we have done some face to face meetings with all of the necessary safety measures.
“The use of virtual technology has helped us to reach the hardest to reach veterans, those who live in the Highlands and Islands and other very remote places, but for all that technology has been good, it can be hard for people with brain injuries to understand why there can’t be face to face contact, but we’ve done all we can to keep in touch and reassure them.
“The Recovery College has been really important during the pandemic and has helped many of our veterans with the self-help techniques around sleep, anxiety and breathing, and many have found it really helpful. If they do that but then need support, then we’d be there for a one-to-one session, but often that was the support they needed to take it forward themselves, now that they knew how to help themselves.
“We’ve organised virtual get togethers with groups, so they can still have that social interaction, and they’ve really responded to each other. There’s been some great banter, and that is what has been missed.”
As a result of the pandemic, but also to enable Help For Heroes to adopt a more locally-focused approach going forward, the charity is scaling back the use of its centres in favour of support within veterans’ own communities.
“The cost of maintaining these centres is really high so we haven’t been using them, we’ve had to redirect our resources to ensure we continued to offer the frontline services which were so badly needed,” says Carol.
“We’re doing a lot more home visits, it is important to visit our veterans in their home environment and community, and we’re developing our clinical team to be more community-based. They are both things we’re focusing on at present.
“We will try to identify what’s available for them in their own surroundings, rather than getting them to come to centres which could be miles away, and find the local hubs which could provide the support for them.
“We’re looking at a blended delivery of meetings and local support, which we hope will work well. The months ahead are being looked at carefully, but what is certain is that our support for those who need us won’t end. We’ll always be there for our veterans.”
‘Rehab should be about client goals’
By engaging clients in goal-centred rehab, which begins at the earliest stage possible, strong outcomes can be achieved in both their physical and mental health, says Kate Sheehan. NR Times meets the occupational therapist whose person-centred approach was recently seen in ITV’s Finding Derek documentary, in her work with the family of TV presenter Kate Garraway
The photo of the woman skiing with her daughter is one Kate Sheehan will always remember.
“Got there. Thank you,” read the accompanying message.
Five years prior to that picture being taken, occupational therapist Kate had sat by the woman’s bedside in Stoke Mandeville hospital, following major surgery on a spinal injury.
“I sat with her and asked what she wanted to do, what was her goal. She said she wanted to go skiing with her daughter,” recalls Kate.
“I was the first person who had asked this – at that point, the focus was on how she would go to the toilet, get washed, what were her passive range of movements.
“But it’s so important to have an end goal and then work out how to get to that point. Sometimes it may take years, but it is critical for a person’s mental health to have something to aim for when they engage in their rehab.
“People need and want hope.”
The fact this woman achieved her goal, set in the earliest stage of recovery, still resonates with Kate, director of The OT Service, based in Northumberland.
“It was really lovely to know that. For me, having client goals is the most important thing and that’s what rehab should be about,” says Kate, who has over 30 years’ experience in occupational therapy.
“While we routinely work with clients for many years, often they’ll reach the point where they don’t want, or maybe feel they don’t need, professionals around them, so they’ll take a break. But they know where we are if they want to come back.
“I have one client who I’ve known since he was five years old, we supported him through his A-levels and university through to him moving into his own property. Recently he came back to me having been married, and told us his wife is pregnant and could we help him in preparing for the future.
“For some people, it might just be an hour on the phone occasionally, for others they might need more, but sometimes knowing who to speak to when you need some support or advice is the main thing. We’ll always do all we can to help.”
Getting a client back into their own home is vitally important to rehabilitation, says Kate, whose recent appearance in the ITV documentary Finding Derek – where she supported TV presenter Kate Garraway in preparing for her husband, Derek Draper, returning home having been hospitalised for a year with COVID-19 – showed her commitment to achieving this for a client.
“Going home is something that means so much to someone, but if a person who had been catastrophically injured returns home to one room with a commode, that’s not going to aid their recovery,” says Kate, whose own specialism is housing.
“If they can return with a series of minor adaptations, with a view to major renovation going forward, then this is something we can work with. If the person is now a wheelchair user and always loved to cook, but now their kitchen isn’t suitable for this, then we can look at how to achieve that, both short term with equipment and minor changes or long term re designing the kitchen to meet their own needs.
“We have one client in this exact position, where we have ordered a standing wheelchair, so she’ll be able to get back to cooking in her own environment.”
While privately-funded rehabilitation enables people to access the bespoke support they need, the ongoing resource issues around community rehab continue, with pressure building even further from the impact of the COVID-19 pandemic.
And with the already significant demand being exacerbated by the newly-recognised need from Long COVID patients, Kate believes action must be taken to enable earlier and more lengthy community support.
“Rehab needs to begin early, the earlier the better. If someone has had a catastrophic injury, where their whole world appears to be falling down around them, the wonderful medical team are there to save their life – but so many of our clients say they feel like a human body, not a human being at that point,” she says.
“There isn’t enough rehab provision in the statutory sector and it’s such a postcode lottery too. In some parts of the country, someone could get six to eight weeks, whereas in others that could be only one or two.
“Most people don’t need rehab for a short period of time, it’s much more longer term, and while getting them home and out of hospital is very important, we want them to get back to doing the things they want and need to do. Some people may need 18 months to rebuild their strength and functional skills, and that’s how long they should be supported for.
“The long-lasting effects of COVID – including everything from the fatigue and brain fog, through to the trauma of being ventilated and of the illness itself – are probably going to be with us for decades, and people need to be supported.
“I really wish the Government would see beyond the pounds and pence of care costs and look at the bigger picture. The personal impact on someone who is unable to work, who has problems with their mental health and probably other health issues too, is going to be very significant and have potentially long term care needs if suitable rehabilitation is not available to them.
“If we can support people from the earliest stages to get back to work, to rebuild their lives, perhaps even to save their relationship – separation, very sadly, becomes more likely after serious injury – then that is much better all round for society.”
Showing young people what’s possible
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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