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Escaping rehab’s ‘black box’ problem

How rehabilitation patients and research projects are being hamstrung by the field’s inability to properly characterise treatments and interventions.

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Deep-rooted in the rehabilitation field is the scourge of the “black box”.

It prevents research progress, hinders patient outcomes and makes it harder to justify spending on rehab services.

Its origins as a popular phrase among healthcare professionals can be traced back to the early 90s.

Its relevance has endured to present day, however; much to the dissatisfaction of a band of clinicians and researchers in the US.

As one paper they produced earlier this year puts it, the black box of rehabilitation is: “Our inability to characterise treatments in a systematic fashion across diagnoses, settings, and disciplines, so as to identify and disseminate the active ingredients of those treatments.”

Another paper in the same series notes: “Most often, (rehabilitation) treatments are defined by either discipline (“X hours of occupational therapy”) or the problem being treated (“gait training”), neither of which describes what the clinician actually does to affect functioning.

“Research reports that include detailed protocols often lack information about how a treatment was administered; for example, instead of reporting what quantities of active treatment ingredients were provided, treatment dose descriptions simply state the duration or number of sessions.

“Even published treatment manuals frequently lack sufficient details to enable other researchers to replicate findings or build on previous results or for clinicians to confidently implement published treatments in everyday care.”

Dr John Whyte (pictured) is among those who have been proactively rallying against the black box problem for over a decade.

Whyte is founding director of the Moss Rehabilitation Research Institute in Philadelphia and a specialist in traumatic brain injury and disorders of consciousness.

He has also spent over 10 years on a journey to solve the limitations of classifications in rehabilitation.

“The vast majority of our treatments are not drugs, but experiences that patients have in collaboration with a clinician such as a physical or occupational therapist,” he says.

“We’ve never had a good way of defining and labelling them. One of the most common ways of talking about the treatments people get in rehabilitation is by discipline – ‘he got six weeks of physical therapy’ – as though either everything a physical therapist does is effective, or nothing they do is effective, and all you need to know is how many times they met.

“Alternatively, we name treatments by the problem that they’re treating, like ‘gait training’, ‘memory remediation’, ‘social skills training’, but again the classification gives us no idea what actually transpired in those treatment sessions.”

The American rehab community, with international support, has been leading the way in unravelling the black box puzzle. In 2005, an American Congress of Rehabilitation Medicine taskforce became a hub for discussion of the black box problem.

The (then) National Institute on Disability and Rehabilitation Research organised a funding announcement that invited development of a new approach to treatment classification and measurement in rehabilitation.

A consortium of researchers and clinicians was then awarded a five-year grant and embarked on what has ultimately been a journey spanning over a decade.

Whyte has been a key participant in developing the concepts in that time and is now chair of the ACRM task force that continues to promote their implementation.

Thanks to a research contract from the Patient Centered Outcomes Research Institute, these procedures have this year been distilled into the Manual for Rehabilitation Treatment Specification (which can be downloaded here http://mrri.org/innovations/manual-for-rehabilitation-treatment-specification/).

Whyte says: “Essentially, we need to get to the point where the label of the treatment allows clinicians and researchers to say ‘this works’ or ‘that doesn’t work’, because everything with that label works or doesn’t. And, everything with that label can be studied and compared to something with a different label.

“The Rehabilitation Treatment Specification System (RTSS) gives a set of rules and procedures by which we would argue every rehabilitation treatment can be specified with respect to its known or hypothesised active ingredients.

“From here we can begin to use it as a taxonomy for grouping treatments. We can use it to aggregate treatments and show how one active ingredient is effective versus another active ingredient.”

The RTSS could be pivotal to improving rehabilitation research as well as patient outcomes.

Its development comes amidheightened pressure on the rehabilitation field to establish an evidence base for its interventions.

“Increasingly, this means the need for comparative effectiveness research on treatments with established efficacy, as well as sophisticated methods for synthesising evidence across studies,” says a paper published by those behind the RTSS initiative.

The same report also highlights the complications of proving the efficacy of rehabilitation treatments. There is the field’s complex, multidisciplinary team structure and its emphasis on behavioural treatments, “which depend heavily on the training of new skills and on the interpersonal dynamics between patient and provider”.

Also, “rehabilitation applies to a great diversity of populations, settings, and clinical problems, from impairments through activities to participation”.

The paper also notes that rehabilitation is patient-centred in a way that fosters “a nearly infinite variety” of treatment goals.

RTSS remains a work in progress for Whyte and his fellow black box crusaders.

There is an ongoing forum for discussion with rehabilitation professionals with diverse backgrounds who are interested in issues related to treatment specification (see more here).

Various projects are also underway to inform further refinement and implementation of the RTSS.

Educational efforts to increase awareness of the RTSS and enable its use by rehabilitation professionals are also planned.

Click on the links below to read more about the black box problem and the RTSS that could help to solve it.

A Theory-Driven System for the Specification of Rehabilitation Treatments (2019, Jan.)

The Rehabilitation Treatment Specification System: Implications for Improvements in Research Design, Reporting, Replication, and Synthesis (2019, Jan.)

Advancing Rehabilitation Practice Through Improved Specification of Interventions (2019, Jan.)

The Importance of Voluntary Behavior in Rehabilitation Treatment and Outcomes (2019, Jan.)

Editorial: An End to the Black Box of Rehabilitation? (2019, Jan.)

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Brain injury

Delivering support to patients, families and carers

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As a specialist provider of mental health support, caring for some of the most clinically complex patients in the UK’s mental health system, the team of experts at St Andrew’s provide bespoke clinical and therapeutic approaches that enable vulnerable patients to recover. Here, NR Times meets senior social worker, Emma Wakeman 

 

Can you tell us about your experience in mental health 

I’ve been at St Andrew’s for three and a half years and I’ve always worked in neuropsychiatry. I actually did a student placement here when I was training to be a social worker and just absolutely loved it. I loved the patients and the work so I applied for a job and got it. 

Before St Andrew’s, I worked with the charity Mind and had done a lot of work in mental health.

Can you give us some insight into the service that you work in

I work as a social worker within St Andrew’s neuropsychiatry service and am based on our brain injury wards. We have different wards based on the needs of patients; an admissions ward for people who are acutely unwell, often with complex needs and behaviours that challenge and rehabilitation wards where we focus on a patient’s recovery with a view to discharge. 

Within our rehabilitation service we support people to re-learn skills of daily living and help them to psychologically manage the changes to their cognition, speech and language and mobility. It’s really about them being able to move on and out of hospital. This is always the goal, no-one wants to stay in hospital for long. 

Our neuro service also includes specialist Huntington’s disease wards and a new dementia hub. Dementia can be an extremely debilitating disease so it’s essential that we are able to support people with their activities for daily living (ADL) and provide the compassion and care that they need at the end of life.

Describe a typical patient presentation 

Of course no patient is the same as another, but you do see some common themes when you’re working with people with brain injuries or neurological conditions. 

A lot of the time patients can lack motivation and this can be perceived as laziness, but it’s actually not, it is the changes in their brain that affect how they see the world and the tasks ahead of them.

People who have suffered a brain injury can be very impulsive as they have lost that filter that ordinarily says ‘Stop, don’t do that as it could be dangerous to me or someone else’, so that can be really difficult for them and others. 

Then we have people who, following a brain injury, have retained abilities in some areas, so for example, their speech could be fine but they aren’t able to use their hands, and that can be really distressing for them.

What is the difference between the service you work in and a general neuro rehabilitation ward? 

Our neuropsychiatry service is very different, often people, unfortunately, come to us from a failed placement because ours is a very specialised service that is able to support people with behaviours that challenge in a compassionate and least restrictive way. 

Our years of expertise and knowledge at St Andrew’s mean that we know what works well and we are always pursuing new approaches and resources, such as virtual reality (VR). Our specialisms helps people who don’t flourish elsewhere to rebuild their lives following brain injury.

In addition to their medical care, in what other ways do you support patients? 

As a social worker in a hospital I am are here to make sure the patient’s social needs are met and we do that in a variety of ways. It could be ensuring that people have good contact with their family members, however that looks, or it could involve making sure that their finances are in order, so if they are entitled to benefits they get those and determining whether they are safe to spend their money. Sometimes people can be at risk of financial exploitation or they are unable to budget and they can end up in debt.

We also oversee patient safeguarding incidents and check that protocols and support are in place to make sure that people are safe in hospital and once they leave us. 

As well as working on behalf of the patient we also support their family and carers and liaise with commissioners and external networks to ensure that people’s recovery journey here goes as smoothly as possible and that at the end of their stay with us we discharge them to the right place. 

What sets St Andrew’s apart? 

Well, the first thing is that St Andrews have ward-based social workers. While I’m ‘bigging up’ my own profession, it is very much needed. If you think about hospital it is very medically focused, so that social emphasis on, and support for, patients is very important.

Within a hospital environment we are a point of contact for carers who can be very confused and distressed. St Andrew’s often helps people from outside of area, so it is really important to have that person on the ward that can support family and carers through the process. We also have a carers’ lead on site who can offer additional guidance and help. 

The role of hospital social worker is not something you get everywhere.

What challenges do you face in your role? 

Personally, I think one of the big challenges is making sure that you are working in the patient’s best interests, not putting your own values and judgement on their situation. Making sure that they have a voice and you’re doing the best you can for them. 

People with a neurological condition or brain injury can find it difficult to express what they think and feel. Often their emotions can betray them because they will feel one thing and do another or they don’t have insight into their condition, which makes it really hard for them to accept treatment and they will almost resist what is really good for them and that can be hard to deal with sometimes.

What do you most enjoy about your role? 

In social work, we deal a lot with discharge and I think anyone who works here will say the best thing is to see a patient moving on, going to the next placement, going back home, returning closer to family. It’s an amazing achievement when you see that. 

Another key and enjoyable part of my role is working with family members and I think they are often forgotten in the world of mental health. I love helping family because you meet people from all walks of life so it’s really interesting and providing this support is something that gives me a great deal of satisfaction. 

Tell us an interesting fact about yourself…  

I actually have two scars on my face. One from when I was hit by a boomerang, and the other one on my chin from a skateboarding accident. Unfortunately none of them was as an adult, both as a child, I’m not that interesting now!

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Inpatient rehab

Redefining rehab: first-of-its kind ward gets set to open

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As the new Castle Hill Hospital rehab ward gets set to open, NR Times speaks to Dr Abayomi Salawu, whose dedication to achieving goals through rehab, and passion for using VR and AR within it, is putting Hull at the forefront of the UK

 

A new NHS rehabilitation centre, which will be the first in the UK to incorporate digital technology and virtual reality into its rehab offering, is set to open its doors. 

The purpose-built ward at Castle Hill Hospital in Hull will have 12 beds and has a range of facilities, including a gym, therapy room and garden area, to enable a comprehensive rehab offering to be delivered. 

It also becomes the first NHS inpatient rehabilitation unit to incorporate digital technology, including virtual and augmented reality into its rehabilitation programme, after Hull hosted the UK’s first successful clinical trial of the GEO robotic gait trainer in 2017.

Patients are expected to move into the new building – the first purpose-built NHS specialist rehabilitation centre across the Humber, Coast and Vale area and neighbouring Lincolnshire – in the coming weeks. 

“This new building brings rehab into modern life. Previously to this, we had our rehab unit as part of the cardiac ward, and more recently in the oncology section, but the limitations of not having a dedication rehab ward became obvious,” says Dr Abayomi Salawu, consultant in rehabilitation medicine at Hull University Teaching Hospitals NHS Trust. 

“Our role in rehabilitation is to help restore function and enhance quality of life for people with complex health needs so that they may go on to live fully and meaningfully, not just exist.

“Normal hospital ward environments aren’t generally suited for this purpose, especially in the case of patients with acquired brain injury or physical and cognitive deficits.

“This new ward will give us the space and the facilities we need to provide specialist rehabilitation input to the highest level, and will also deliver an environment which is more conducive to patient recovery. 

“We have 12 beds, we do need more, but while acute clinical care and public health have both received significant investment for many years, rehabilitation – the third pillar upon which the NHS is built – has sadly lagged behind. 

“So our new rehabilitation ward is a really significant development and definitely a step in the right direction.”

On site during construction (l-r) Madeleine Leetham, senior occupational therapist, Dr Abayomi Salawu, consultant in rehabilitation medicine, and Lisa Cunningham, ward sister

Redefining the traditional definition and practices of rehab is something Dr Salawu has long been committed to, and that extends into the ethos of the Castle Hill ward. 

“We offer complex rehab, if the nurses or staff on any ward think they have a patient who could benefit, then they can come to the new ward,” he says. 

“Life has to be about more than going to the toilet and the whole ethos of being able to conquer that starts by conquering your first environment, which is hospital.

“The approach that has always been taken often makes a patient more poorly, in a way. I’m not underplaying physical injury, but in an NHS hospital, the first thing we do is give someone a bed, even if they walked in. A lot of people become de-conditioned when they are hospitalised, and that’s making patients worse. 

“If you can get a patient as physically fit before surgery, through ‘pre-hab’, then that can make things so much better before and after. With our amputation patients, we do the ‘pre-hab’ work with them and it’s so successful we can then pick them up after surgery as an outpatient. We haven’t used our rehab beds for amputation patients for four or five years now.   

“Another thing in rehab is that there isn’t always a cure, but that doesn’t say you can’t live life well and meaningfully. If, for example, you have a child with Cerebral Palsy, then that condition isn’t going to be reversed – so let’s move on and find out what we can do. How can we enable them to do things and how can we support them in that?”

One key way of engaging patients is through technology, believes Dr Salawu. In addition to the therapy work of the MDT, Dr Salawu is a firm believer in the power of virtual and augmented reality, and is so invested he is even leading the development of new apps.

“I’m a firm advocate and believer in technology, I’m totally sold that this helps rehab. I always look for whatever low hanging fruits we can use, and technology is something we can use. It’s easy, quick, achievable and doesn’t cost a massive amount,” he says. 

“We use virtual reality and augmented reality and we have linked in with Hull University to develop a virtual kitchen app, which patients can interact with virtually and then use their skills to replicate the tasks with their OT in the real-life kitchen. 

“It’s all about practice, practice, practice. That’s what helps recovery and that’s what rehab is about. But practice is boring, for a lot of people rehab isn’t exciting, and that’s the problem. 

“If you want someone with a paralysed limb to practice moving it, if they try a few times and their limb doesn’t respond, even the most motivated patient will give up. But if you translate that into a virtual environment, where you can move your virtual limb in a virtual world, then that might give the opportunity for some recovery – and psychologically can be very important. 

“The more opportunities you give to the patient to practice rehab, so they can maintain or recover their function, the better. That’s why VR works so well, because it’s fun it makes rehab more engaging. 

“That’s where we should be pushing, to empower patients to take over their own rehab. 

“I said to the computer scientists that I hear video games are addictive, could they please create some addictive rehab for my patients so they would become addicted to their practice!

“But we also have a quiet room in the new unit, where patients can use the immersive environment of a VR headset to be calm, de-escalate, become less agitated. We have developed the Brain Recovery Zone app, which is very calming and soothing, and can be used by patients in their own homes as well. 

“Through putting on a headset and being in that calm environment, that can also be very important in rehab.

“For my patients, I’ll say ‘Whatever floats your boat. Try things in rehab, see what you enjoy and what works’ and we’ll see what we can achieve. I want to empower patients to take control of their rehab however they can, and by using these pieces of technology, we’re seeing great results.” 

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Interviews

Inspiring a brighter future for residents

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A neuro-rehab provider which opened its first facility in Worcester shortly before the first lockdown has succeeded against the odds – and now has plans to expand in 2021, as NR Times reports.

Inspire Neurocare provides support for people with a variety of neurological conditions, offering rehabilitation, respite and palliative care.

The firm opened its first specialist care centre in Worcester in February 2020, and this will be followed by further facilities in Basingstoke and Southampton in 2021/22. Inspire prides itself on a novel model of care that has “no limitations on the possibility of recovery,” all led by director of clinical excellence Michelle Kudhail.

A key element of the centre’s approach is the team’s commitment to understanding that every patient, and the circumstances that led them there, is different.

Whether this means enabling people to leave high dependency hospital units and develop their independence in a modern, home-from-home environment, or providing long-term support or end-of-life care, the service is designed to work around the needs of each patient.

Michelle’s background means she is the ideal person to head up the Inspire team, having worked as a neuro physiotherapist in the NHS until 2010, before moving into the private sector.

Michelle Kudhail, director of clinical excellence at Inspire Neurocare.

She takes an holistic approach to patient care, which has led to the creation of a team of life skills
facilitators and therapists at the provider, who develop their care around the needs of everyone.

“The life skills facilitators support and assist the residents to do as much as they can for themselves,” she explains.

“As the name suggests, their role is more than a carer; it is to facilitate the residents in all aspects of their care, whether that’s helping them get their breakfast, choosing what they are going to wear, or taking their medication.

“Their skills are broad because we want them to be involved in all aspects of the residents’ care; and because we want to provide what they need at the time that they need it.

“Roles such as this also enable us to evaluate the outcome of any action. If a resident has been given pain medication, a facilitator can assess whether it’s been effective, rather than a nurse giving the medication and then not seeing them until the next round.

“We also know from a therapy perspective that some patients don’t respond well to having therapy at a fixed time on a particular day; they simply might not feel like doing it. Our facilitators mean we can best provide interventions for the resident when they want them.”

Alongside this role, the facility also employs a wellbeing and lifestyle coach, focussing on the health and emotional needs of both residents and their relatives, particularly during a time when COVID has caused a lot of uncertainty.

Michelle says: “We wanted somebody that had relevant experience in working with residents, particularly with neurological conditions but also with a well-rounded experience so that they would not just focus on one aspect.

“The idea is to have somebody who can offer support in all areas, whether it be psychological, emotional or physical.”

Staff are overseen by experienced rehabilitation consultant Dr Damon Hoad, who shares his clinical oversight with the interdisciplinary team and supports patients on their journeys.

The rest of the clinical team have a wealth of experience within neuro services in and around the region.

The design of the Worcester facility draws on Michelle’s years of experience, and she had the opportunity to use her skills to help develop the purpose-built home.

She says: “We’ve had a lot of involvement all the way through from knocking down the pub that was there, to seeing it grow. Having the opportunity to be involved from the ground up was fantastic.

“Within the build itself we try to consider the needs of younger people, and so the inside of the home is very much a contemporary design and a lot of research has gone into its development to ensure it has the correct, up to date, equipment.”

Adding to the sense of autonomy staff are keen to foster, is the independent living flat, which staff are able to support via environmental controls.

With soundproofed rooms, residents can enjoy listening to music or watching films without disturbing others.

In common with all care facilities, the impact of COVID means that a lot of thought has had to go into the long-term plans for the property. The recently-built visitation suite – known as the ‘family and friends lounge’ – allows visitors to meet their loved ones in a safe and COVID-compliant way.

The suite includes separate access for visitors from outside, and features a large transparent Perspex screen separating each side of the suite, while an intercom enables contact-free communication.

As well as creating an infection barrier, the screen also assists when it comes to residents who may struggle to understand that they are unable to hug their relatives, while still allowing them to communicate and see each other up close.

After each visit, the room is cleaned and decontaminated in preparation for the next visit.

As Michelle explains, human contact is essential for emotional wellbeing, adding: “We’ve tried to create an environment that is as safe as possible, because we know how important visits are to the residents but, more particularly, to their relatives.

“Supporting the residents through this time is vital. We have residents that are used to going out and doing things in the community and we have had to adjust by being creative in the ways in which they can still access things that they enjoy and still communicate with their families.”

And while the pandemic has certainly delivered some challenges, Michelle and the Inspire team have been able to look at some positive outcomes.

She explains: “One of the positives for us is that it gave the team and the residents the opportunity to really get to know each other.

“We could also develop the life skills facilitator role to its truest form, because everybody was very much working together dealing with the crisis, supporting each other and supporting the residents.

“It was a testing time but it actually it brought the team together, bearing in mind the facility opened literally as everything was going into lockdown.”

The creation of the COVID-secure visitation suite is just one example of the creativity with which all at Inspire approach care, Michelle says.

By looking to build collaborations with other organisations, Michelle also hopes to share her hard-won knowledge, potentially becoming involved in research and training in the future.

Despite the upheaval of its first few months, the Inspire team has already achieved some successful patient outcomes.

One such success story is the case of Adrian, who came to the centre for specialist neuro-rehab following a car accident in which he suffered a severe brain injury. In the months that followed, Adrian’s journey enabled him to walk out of the service and return home to his wife and children.

(See Adrian’s story below – and read more here).

While the coming months may bring more challenges, as COVID lingers and vaccinations are rolled out, the Inspire team seemingly has the skills, approach and dedication to rise to whatever the future holds.

www.inspireneurocare.co.uk

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