Laura Nicholls, lead speech and language therapist at The Bridge Neurological Care Centre in Middlesbrough, reflects on the rehabilitative journey of her patient Angela on regaining some normality following a lengthy admission in intensive care.
Firstly there’s a couple of things you need to know about Angela before I can tell you about her journey. She isn’t usually one to let another person speak for her but I have been given full permission to share with you all the ups and downs of her rehabilitative journey.
Angela has acquired the very fitting nickname ‘The Duchess’. This comes from her previous occupation as a community matron, her fine eye for detail, her drive for perfection and her tendency towards bossiness.
In April 2019 Angela was admitted to hospital with Myasthenia Gravis that resulted in Myasthenic crisis (respiratory failure).
Myasthenia Gravis is
a rare long-term neurological condition that causes muscle weakness.
In Angela’s case she experienced severe difficulty swallowing, loss of voice (aphonia) and severe breathing problems.
This resulted in the insertion of a tracheostomy (an opening created at the front of the neck so a tube can be inserted into the windpipe/ trachea to help you breathe) with 24/7 ventilation to assist with breathing.
This emergency procedure can often cause weakness and structural damage that further complicates an individual’s recovery of function. This means that often the long-lasting impact of having difficulty speaking, eating and drinking on someone’s quality of life is not fully realised until the months after initial survival has been achieved.
It is the role of a speech and language therapist to provide assessment, treatment and support for individuals who have difficulties with communication, or with eating drinking and swallowing.
Angela’s swallow and voice were severely affected second to muscle weakness and poor breath support. This resulted in poor airway protection when she was eating and drinking meaning food and fluids entered the trachea and lungs rather than the oesophagus leading to the stomach. This can cause serious health concerns as it can result in airway obstruction (choking), chest infections, pneumonia and death.
I worked closely with Angela to identify what was most important to her and what would make a difference to her quality of life and wellbeing. Angela identified that she would love to be able to have a gin and tonic and FaceTime her family and friends without them having difficulty hearing her.
This was a huge target for a lady who was nil by mouth with an unsafe swallow having all her nutrition and hydration needs met via a tube into her stomach (percutaneous tube) and who had a very weak voice; Angela’s friends and family would often ring her but could only have a one-sided conversation as Angela’s voice was too weak to be heard over the phone.
From thorough assessment, I created an intensive swallow and voice rehabilitation programme when Angela was discharged to us in August 2019 which utilised specific muscle building/strengthening exercises to target the areas of breakdown in her voice and swallow.
This programme focused on improving oral control and coordination, improving laryngeal elevation and hyoid excursion (good range of movement is required to swallow safely), improve airway protection, increase strength of cough and strengthen her vocal cords to increase strength of voice. Angela completed this programme multiple times per day.
Her exercises were recorded onto her iPad for her to work through daily and support her in the completion of these.
Angela’s recovery and ability to wean from ventilation was lengthy and unpredictable at times. She suffered a number of setbacks and respiratory complications during her recovery that impacted her ability to complete therapy. However she remained determined and focused on what she wanted to achieve.
By December 2019, she made significant progress. Through her dedication and perseverance with her rehabilitation programme she achieved her goals. After months of being unable to eat and drink Angela’s swallow was now safe – she was able to eat and drink without difficulty or fear of choking.
Angela’s voice was also a lot stronger, she went from being inaudible on the telephone to being intelligible 100 per cent of the time and being understood in all communication environments with no incidents of communication breakdown with familiar or unfamiliar listeners.
Angela continued with her rehabilitation programme and in February 2020 she attended her local flower club meeting where she addressed all 70 attendees, delivering a 10 minute speech without difficulty.
This was a major achievement given that she was struggling to make herself heard to one individual in a quiet room six months prior.
It was a moment of great pride when she introduced me to the audience saying: “This is Laura, my speech therapist, without whom I would not be able to speak to you all today and without whom I would not be able to enjoy this gorgeous spread you have put on for us all.”
In March 2020 the tube into Angela’s stomach was removed as she no longer needed it to meet her nutrition and hydration needs – she could do this by eating and drinking herself.
The therapy outcome measures graphs clearly show the positive outcomes she has been able to achieve through therapy, but the true outcome is written all over her face – smiling ear to ear.
Through therapy Angela did not just regain the ability to speak and swallow, she gained confidence in recovering functions that she thought she had lost forever and a new appreciation for the things in life that people often take for granted.
Angela has been a complete joy to work with and one of the greatest honours of my career has been to work alongside her.
Now enjoy your G&T Duchess – you deserve it.
Laura Nicholls is a speech and language therapist at The Bridge Neurological Care Centre in Middlesbrough, which provides specialist inpatient neurological rehabilitation and complex care for people with neurological illnesses, acquired brain and spinal cord injuries. For more info visit www.elysiumhealthcare.co.uk.
Stroke survivors’ life quality greatly improved by arts – new book
Launching on World Stroke Day on 29th October, new publication Recovering Hope is the result of a decade of working with stroke survivors in hospitals and in the months following their release.
The book presents qualitative data and evidence from healthcare professionals, artists and stroke survivors into how a tailored arts intervention can assist in recovery and improve quality of life.
The book, written by Kevin Murphy, Lucinda Jarrett and Chris Rawlence from Rosetta Life, is the first output of SHAPER, the world’s largest study into the impact of arts on mental health launched by King’s College London and UCL.
The book lays out the history of the Stroke Odysseys project and explains how Rosetta Life works with stroke communities through movement, song, poetry and performance.
Alongside their methodology, evidence and testimonial is given into the therapeutic benefits of the programme.
Findings have shown that the Stroke Odysseys project can give participants a sense of being ‘free’, and researchers identified a key theme of ‘the importance of doing something new’ and ‘discovering something new about themselves’ which was rewarding and enabled people to imagine a new life after the trauma of brain injury.
Independent qualitative research and ethnographic evaluation found an increase in focus, memory, movement, and confidence, and an overall improvement in wellbeing and quality of life from participants.
The book also outlines how Stroke Odysseys complements and challenges the clinical model of rehabilitation, enabling people to progress on a personal journey of recovery and how it innovates at the junction between art making and care giving, re-connecting these related disciplines.
The Stroke Odysseys project created by Rosetta Life is one of three interventions, all of which have been proven to improve patient health, that are being trialed among larger groups of people within NHS hospitals. SHAPER – Scaling-up Health-Arts Programmes: Implementation and Effectiveness Research – was launched by King’s College London and UCL. More information about the study can be found here.
Deborah Bull, CBE (Baroness Bull) said, “Stroke Odysseys calls for us all to work together across voluntary, community, arts, health and education sectors, and government to model a compassionate community that cares for all its members – a message that could not be more important in the challenging times in which we live. Recovering Hope is an essential handbook for everyone with an interest in this field – whether clinician, artist, researcher or patient – and it will be particularly relevant to those dedicated to transforming the lives of people experiencing the effects of a stroke.”
Alongside the book launch, Rosetta Life will be streaming their 12-minute opera I Look For The Think, rehearsed and recorded over Zoom with sixty stroke survivors, professional musicians and the Adult Community Company from Garsington Opera.
At the height of the pandemic when vulnerable members of society were shielding, a community of the UK’s most isolated and vulnerable people came together online to create the opera about love after stroke.
I Look For The Think by renowned composer Orlando Gough was based on the lived experience of participant Kim Fraser and his wife and carer, Sarah. The opera will also be shown at Royal Berkshire Hospital. A trailer can be seen here.
Rosetta Life was founded in 1997 to use arts in health innovation to change the way we perceive the elderly, frail, disabled, and those who live with life limiting illnesses. Their work with stroke communities, Stroke Odysseys, started as a song cycle developed as part of Derry, City of Culture 2013.
Since then, Rosetta Life has produced Hospital Passion Play, which was performed at the Victoria and Albert Museum in 2017, Stroke Odysseys, which premiered at The Place before touring, choreographed by Ben Duke and composed by Orlando Gough.
Orlando Gough is known for his operas, choral music, music for dance and theatre, and is a former Associate Artist at the Royal Opera House. I Look For The Think is an extension of Act 2 of Hospital Passion Play.
New neuro-rehab centre gets the go-ahead
Plans to build a new neuro-rehab centre in Southampton have finally been given the go ahead.
The new 57-bedroom neurological rehabilitation centre will be built on the old Bargain Farm site in Nursling, on the north-west side of the city.
Work on the site is due to begin in the first quarter of 2021 with the service welcoming its first residents in the summer of 2022.
The bespoke facility will include physiotherapy and medical consulting rooms together with a therapy gym fitted with rehabilitation equipment as well as lounges, dining rooms, cinema and a café bar.
The facility will also include a self-contained step-down apartment.
The service will be operated by Inspire Neurocare and will provide rehabilitation care, long-term care, respite and palliative care for people with brain and spinal injuries as well as complex neurological conditions such as Parkinson’s disease and Huntington’s disease.
The centre will also be designed with the highest safety standards in mind, in light of the COVID-19 pandemic.
Additional features include a bespoke Covid-secure visitation suite (The Family & Friends Lounge), in-built thermal imaging technology in the entrance lobby (to ensure all visitors to the home, including staff, have their temperature taken on a daily basis) and a ventilation system which ensures air in resident and day spaces is fully changed every 15 minutes.
The centre will also have hand washing and hand sanitising stations throughout for staff, residents and visitors.
The Inspire Neurocare centre is being built by Hamberley Development, the 2019 HealthInvestor Magazine Residential Care Provider of The Year.
Daniel Kay, director at Hamberley Development, said that the neurological rehabilitation centre would be a significant addition to healthcare provision in Southampton.
He said: “The Inspire Neurocare neurological rehabilitation service will be a centre of excellence that will allow us to support local NHS services and provide much-needed complex care services for local people.
“Rehabilitation services are becoming more and more advanced and so it is vital that the appropriate environment exists to deliver these life-changing services.”
Adjacent to the neurological rehabilitation centre Hamberley Development will also build a leading-edge care home for Hamberley Care Homes that will include 80 en-suite bedrooms, spacious café bistro, private dining room, hair and nail salon, activity room and bar as well as a cinema, spacious resident lounges, dining rooms and quiet lounges.
The home will also be designed with the highest safety standards in mind, in light of the COVID-19 pandemic.
The psychiatrist fighting for domestic violence victims
Australia’s New South Wales government has promised to improve brain injury testing for domestic abuse victims after a psychiatrist drew attention to inconsistent care for vulnerable women. Psychiatrist Karen Williams urged the government to adopt a concussion protocol for family and domestic violence victims after doing her own research and being shocked at what she found.
It started when Williams noticed the disparity in how her patients were diagnosed and treated.Williams specialises in the treatment of post-traumatic stress disorders (PTSD), often with military, police, emergency personnel and other first responders.
But she also treats the general population, the vast majority of whom are women with histories of child and domestic abuse.
“I was getting two populations,” she tells NR Times. “The military patients, who are clearly identified as having PTSD, and the female population, who are mostly identified as having depression, anxiety and personality disorders, but had incredibly high rates of abuse in their histories.But Williams saw that whilst both groups had similar symptoms, and similar levels of trauma, they had very different treatment options.
“There’s a lot more funding put into supporting traumatised soldiers and first responders than there is for women who have experienced trauma within their home.
“In Australia, we don’t have much at all for women and children victims of abuse.”
This was a particular concern because of the amount of times Williams had heard about multiple head injuries and concussion among women who were victims of domestic abuse, which is similar to boxers and those player high contact sports.
“Women who’ve been unconscious several times or strangled have symptoms such as memory deficits, insomnia, migraine and mood swings, which all could be put down to PTSD and depression, but also brain injuries.”
But if Williams wanted to find out if a patient had a history of brain injuries, she would have to refer them for neuropsychiatric testing, which costs up to AUS$1000.
“This is completely unaffordable for many abuse victims so it just doesn’t happen, so we don’t investigate women who’ve had brain injuries.
“One brain injury unit told me they would consider taking on a patient if they could provide evidence that an assault happened – such as hospital records.
“This completely fails to take into account that the vast majority of domestic violence survivors will not report any assault to anyone and will not have so-called evidence.”
Then, Williams was speaking to a colleague whose son had had a head injury in a sporting field.
While they were together, a nurse rang to follow up the treatment he’d received in the emergency department.
“The nurse asked how her son’s personality and memory was, and gave a fantastic run-down of the symptoms that can happen after a concussion,” Williams says.
Williams was shocked – she’d never heard of someone ringing up women after a head injury in a domestic violence case.
She rang the local emergency department and asked about their protocol following a head injury obtained during sport.
She was given a detailed outline of the observations they take, their plan over the weeks following the patient’s injury and the advice they give the patient.
Williams called several emergency departments in other Australian states, and whilst all had a protocol for sports players following a concussion, none said they had a protocol for women who had been the victim of domestic abuse.
“There wasn’t one place that said they had a particular protocol.
“If they knew the woman had had a head injury they’d give them the basic head injury protocol, but nothing specific that took into account the very individual needs that a woman with a head injury in a domestic situation might have,” she says.
Williams says research indicates health care professionals correctly identify family violence victims about one per cent of the time.
“In sporting players’ protocol, there’s a recognition that says that your patient may not know what they’ve experienced in the past was a head injury, so the advice is to be really explicit. They’re given a list of questions to break it down with that player to make sure they understand what could be a head injury.
“There is opportunity for scanning, and neuropsychological testing if there is evidence of persistent symptoms.”
Williams says doctors should be going through the history of women, too, to see if they’ve lost consciousness in the past.
“There are a variety of mechanisms in which a woman experiences brain injuries in a domestic situation, many more than sporting probably, and the more head injuries a woman has, the greater her chance of long-term problems,” Williams says.
This includes a higher risk dementia, PTSD, migraines, learning problems and memory problems.
“But women aren’t told this, so many don’t know that they’re at risk of these things.”
Williams says there is a ’hidden epidemic’ of women in the community with brain injuries no one knows about, who could have been diagnosed with mental health issues instead.
In 2018, Brain Injury Australia released its findings after looking at the prevalence of brain injury in victims of domestic violence.
It found that 40 per cent of victims who attended hospitals in Victoria, Australia, for domestic violence had a brain injury and the majority were women.
But there’s no specific treatment for these women, Williams says, and many won’t even know they have a brain injury.
“Abused women are a very neglected population, and when you think about the money being spent on sports, and sports players, there’s no reason we can’t look after woman as well,” Williams says.
But despite these findings, Williams says it didn’t lead to any change.
“When I found all this out, I was angry and upset,” Williams says.
She arranged to meet New South Wales’s Labour MP Anna Watson in August, and when Williams told her what she’d found, she says Watson was ‘mortified’.
“She immediately got on the phone with the office of the minister for the prevention of domestic violence, and requested a meeting as soon as possible.
In the Zoom meeting a month later, Williams went over what she had found with Mark Speakman, Attorney General and Minister for the Prevention of Domestic Violence, and outlined the obstacles facing women.
But he made no promises, and Williams said she felt he didn’t understand the urgency or gravity of the situation.
Watson then went to the media, and the story was reported on. Within a week, the government produced a statement promising to investigate the issue.
“We’ll all be watching and holding them accountable,” Williams says.
“I will be trying to follow up, I won’t let it go.”
Williams is disheartened that it took media coverage to get the government to respond, but says she’s learnt a valuable lesson.
“Part of the reason I’ve spoken to the media and been vocal about it, is my experience is that when we do things quietly and ask for things politely, the government says there’s no money, despite being one of the wealthiest countries in the world. But when the voting population starts getting angry and asking what’s going on, that’s when we see an answer.
“It’s been a sad realisation for me to recognise that people don’t respond to do the right thing, they respond to winning the vote, so I will keep being as loud as possible in the media.”
Leaving brain injuries undiagnosed has significant consequences, Williams says.
“You’ve got women feeling like they’re a bit crazy, women wondering, ‘Why don’t I remember things, why have I got headaches all the time, why can’t I sleep?’
“It makes women feel worse, like something is wrong with them rather than identifying the underlying cause that we’re completely missing.
“If women are unable to work due to the physical and psychological side effects of a recurrent head injury, they need to be able to apply for NDIS funding (National Disability Insurance Agency). f they don’t know they have a brain injury they will be left to flounder – which is what is happening now.
“The vast majority of doctors don’t know about this. The medical system failing these women.”
There will be a lot to work out as support becomes available, Williams says, as some women could fear that having brain injury diagnosis could interfere with them getting custody of their children.
But, ultimately, change will benefit these women.
“All women deserve to know the truth about what’s happening to them,” she says.
“In some cases, their brain injury will be the final straw. They might think an act of violence isn’t a big deal, but if a doctor says, ‘Look how many times this has happened to you, you could end up long term brain damage’, that might be the final push that makes her take steps to leave. There’s no excuses to justify why these conversations aren’t had.”
- Opinion11 months ago
Biting back against a common threat
- News1 year ago
The next gen-air-ation of sensory spaces
- Interviews2 months ago
The neuropsychologist teaching tai chi
- Opinion1 year ago
How to find the perfect powerchair
- News1 month ago
Achieving independent bed access with neurological conditions
- News3 months ago
‘Excluded’, ‘stigmatised’ and ‘feeling inadequate’
- Insight2 years ago
A ticking timebomb in stroke care
- More headlines11 months ago
2020: The year of the exoskeleton?