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Is this the answer to Britain’s stroke care problems?

An innovation which brings patients and professionals closer together is threatening to shake up stroke care in the UK, as Ethan Sisterson reports.

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One in six people will have a stroke in their lifetime, according to Public Health England, while two thirds of stroke survivors leave hospital with a disability.

The road to recovering lost or damaged functions can be long and arduous; and is likely to involve a cast of healthcare professionals in a range of settings.

Optimising outcomes against the many complexities of post-stroke rehab – plus resource pressures and the disparate nature of some services – is a major UK healthcare challenge.

Stroke Active believes it has the tonic for smoother and more positive journeys from the immediate aftermath of a stroke back towards normality, or the closest possible point.

Its app, named Innovation of the Year Award at the 2019 European Neuro Convention, aims to improve patient self-management, as well as communication among stroke professionals.

It also empowers all parties with a clear set of tasks and supports remote monitoring of the patient’s progress.

Managing director Erika Pearce says: “My father-in-law suffered a severe stroke in April 2017.

“We moved him into a private rehab facility and he’s now recovered to the point where he’s living independently.

“It’s clear to us that without this intensive rehab he wouldn’t be leading the life he is now.

“While the in-patient rehab team were fantastic, they only have a certain amount of resource and the same is true of a lot of community teams.

“Stroke affects over a hundred thousand people in the UK each year and we wanted to tackle some of these long-standing issues.

“These include the need for patient self-management through a clear rehab program, the gap between in-patient and out-patient rehab, the difficulty in finding local therapists with neuro experience, the strain placed on family members and the absence of a readily available multi-disciplinary platform.

“The response thus far has been fantastic.”

Certainly self-management has been identified as an area of concern by the NHS.

In the stroke part of its Long Term Plan, announced in January, it states the need for “more support with self-management and navigation post-stroke for patients and carers”.

The Stroke Association’s landmark State of the Nation paper, meanwhile, points to some of the other issues Stroke Active has in its sights.

It reports that only three out of 10 stroke survivors who need a six month assessment of their health and social care needs receive one.

It also shows that four out of 10 hospitals in England, Wales and Northern Ireland have a shortage of stroke consultants – and that only around half of stroke survivors are discharged from hospital having being assessed for all appropriate therapies and with agreed goals for their rehabilitation.

Of course, the stroke survivor’s family can also face immense challenges – which Stroke Active is also aiming to alleviate.

Stroke Association data shows that 40 per cent of stroke carers feel exhausted, while as many as a third of them receive no emotional support following their loved one’s stroke.

Perhaps the connectedness Stroke Active potentially gives the carers to professionals, as well as the patient, may help to feel better supported.

The patient is able to choose up to two representatives, including family members or carers, to access the app and help to support their rehabilitation.

Users set themselves up as a patient/representative or as a therapist, with two different dashboards for each group. Therapists are required to enter their HCPC number when registering.

Patients or their representatives are given access to a directory of neuro physios, occupational therapists (OTs) and speech and language therapists (SLTs) closest to their postcode.

By pressing ‘Connect’, that patient will appear in the list of pending connection requests on that therapist’s dashboard.

Once connected and after an initial assessment, the therapist can set daily or weekly tasks for the patient to complete.

The patient can tick these off on their ‘Task Manager’ and the whole team can track their progress.

Each patient’s message board allows them and all team members to communicate with each other on that patient’s progress, ask questions and post web link.

“We’ve also included a video function which allows more complex exercises to be recorded and labelled on a patient’s device and played back at their leisure,” says Erika.

Several years of development preceded the launch Stroke Active in January 2019.

“We engaged a third party developer on the project two years ago.

“We spoke to a cross section of patients, family members, neuro physios, OTs and speech and SLTs throughout the development of Stroke Active and continue to do so with the intention of continually improving the platform.

“Stroke Active has been entirely self funded and we placed huge emphasis on GDPR compliance… We are in the process of formally announcing NHS trials with several Trusts.

“The aim of these trials is to quantify the benefits of using Stroke Active through empirical as well as anecdotal evidence.

“We’re engaged with many other national organisations who have been enthusiastic and supportive.

“Aside from the problems we’re already addressing, there may be other ancillary benefits to using Stroke Active.

“We’ll be looking for evidence of this during the NHS Trials too. Patient’s mental health has only recently begun to be discussed.

“Having a support network of qualified therapists and family members who can all respond remotely and efficiently would seem to be helpful.”

Erika believes there is also scope to expand the app beyond stroke care for use with other conditions.

“It’s become clear that the problems we’re trying to address through Stroke Active are common to other conditions requiring neuro-rehab.

“There’s been substantial interest from the field of acquired brain injury.

“Any lack of organisation during the first few months of a brain injury occurs at the worst possible time. We don’t pretend that Stroke Active is for every neuro-rehab patient.

“We’ve tried to make the app as intuitive as possible; my father in law accepts he’s useless with all forms of technology and he finds Stroke Active very easy to use.

“The therapists we’ve spoken to also find the patient dashboard very user friendly.

“Ultimately, the funding pressures on the NHS are significant and the provision of patient care varies dramatically from Trust to Trust.

“Many patients turn to private practitioners for help. Stroke Active can be used by both NHS and private therapists.”

See more at www.strokeactive.com.

 

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Ofsted registers Chroma as an Adoption Support Agency

Arts therapy provider Chroma is now registered with Ofsted as an Adoption Support Agency, providing therapy services to children and adults up to 25 years old.

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Ofsted inspectors recently evaluated the impact of Chroma’s services on children, young people and adult service users as well as test compliance, support improvement, and focus on the things that matter most to children’s lives (and where relevant other service users).

When working with adoptive families, Chroma therapists use arts therapy, dramatherapy or music therapy approaches to help enhance parent/child attachment and bonding, strengthen family relationships, reduce anxiety and aggression, and build capacity in parents to support their children’s development.

Ofsted inspects and regulates services that care for children and young people as well as ensure that organisations providing education, training and care services in England do so to a high standard for children and students.

Daniel Thomas, joint managing director at Chroma, said: “Adoption support, through arts therapy is vital in helping children emotionally express themselves as well as help form bonds between parent and child. Having an Ofsted registration allows families who require post-adoption support to have confidence that Chroma provides a high level of therapy services.

“The health, well-being and safety of children, young people and parents are at the very heart of everything that we do, and I am pleased that Ofsted has recognised this. I am also pleased that we are able to demonstrate the effectiveness of our own internal self-assessment approach.”

In relation to the newly recognised Ofsted status, Daniel continued: “We are totally delighted. It is wonderful to be recognised for the work we do, and registration is a testament to our fantastic team and our partners. We are proud as a team and of each other collectively.

Chroma works closely with over 50 local authority post-adoption services. Its work with adoptive families is funded by the Adoption Support Fund to help families and social workers secure significant funding to support music, arts and drama therapy interventions.

Parents and social workers can call Chroma on 0330 440 1838 to talk about the work they do to support adoptive families, and to start to process of securing Adoption Support funding.

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The integration of rehabilitation and medico-legal experts

In a serious injury case, a plethora of expert evidence will be obtained, writes Irwin Mitchell’s David Withers…

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There will be a detailed forensic analysis of the injured person’s condition and prognosis with a large focus on the functional impact.

The Guide to Best Practice at the interface between rehabilitation and the medico-legal process provides helpful information about how to ensure that the injured person is placed at the centre of the process and that confusion and a disjointed approach are avoided. The key principles of the best practice guide are:

If the injured person remains under NHS care:

  • Any rehabilitation recommendations should be implemented only after consultation with the NHS clinician;
  • An expert report obtained in the litigation should be sent to the NHS clinician at the earliest possible opportunity;
  • An expert may discuss certain recommendations with the NHS clinician;

If the injured person has been discharged from the NHS:

  • There should be a qualified medical practitioner or other appropriately qualified therapist or nurse with responsibility for the management of the treatment programmes. In practical terms, this is usually now done by a case manager but, as I have explained below, it is vital that there is oversight from medico-legal experts;

Although the Guide was prepared some years ago and the authors have in fact retired (one of whom, Grahame Codd, was a Partner of Irwin Mitchell LLP) the principles remain valid.

As lawyers, it is vital that we ensure that the injured person’s rehabilitation feels “joined up”.

If the rehabilitation and the medico-legal examinations feel separated, we have allowed the rehabilitation to become fragmented. In effect, the NHS team should initially guide the rehabilitation recommendations.

My colleague, Glen Whitehead, has highlighted the importance of rehabilitation prescriptions in an article prepared for NR Times.

If there are subsequently private rehabilitation recommendations (either on a treating or medico-legal basis), the NHS team can be consulted and can give an opinion as to whether those recommendations are required and likely to make a difference.

Once the injured person has been discharged from the NHS’ care, the focus should shift to medico-legal experts.

It is a high risk strategy to let a private treatment provider to provide recommendations and implement them without any check or balance.

That is not to say that the treatment providers are incompetent; rather, in litigation, it is for the medico-legal experts to justify the rehabilitation.

If the experts are not the ones driving the recommendations or endorsing the proposed recommendations, it can create difficulties with recoverability of parts of the claim [see for example, Loughlin – v – Singh [2013] EWHC 1641 (QB)].

I am involved in a serious injury case involving a severe traumatic brain injury. The case is subjected to an anonymity order; therefore, the details I have gone into are intentionally brief.

The injured person has deteriorated to the extent that inpatient admission hospital treatment has been required four years after the incident.

The relevant medico-legal experts for both sides in the litigation have had a conference call with the Consultant at the hospital.

They have shared ideas about how the injured person could make an improvement and ultimately be discharged. There is a focus on the short-term. The discussions have been outside of the litigation process.

The lawyers have not been involved. There has been a commitment that we all want the same thing: to help the injured person get better insofar as possible.

It has been a really refreshing experience. The injured person is now making an improvement; discharge from hospital is likely in the near future, subject to Covid-19 and the period of isolation.

The value of the case will decrease if improvement is made but the injured person’s quality of life will improve. The rehabilitation and the litigation are joined up and are ultimately making a positive difference to the injured person’s life.

Ultimately, we must remember that to the injured person, rehabilitation and litigation are not differentiated. It is their life. They should always be at the very centre of what we do.

Collaborating with professionals should be seen as a strength, not a weakness. As always, communication and clear goals which are shared across all relevant clinicians and therapist are vital to ensure the greatest success.

David Withers is a partner and solicitor-advocate at Irwin Mitchell LLP, leading a team specialising in neuro-trauma and other serious injuries such as amputations or significant poly-trauma. 

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News

Predicting potential and the value of hypotheses…

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Factors that likely influence rehabilitation potential and recovery and predictions of the same include previous abilities, age at onset/injury, individuality, drive, underlying motivation, health, support, environment, the exact nature of injury and the exact nature of individual pre-morbid neurology.

Other influencers include our understanding of the brain, how it works, how it repairs and how it responds in the short, medium and long term after injury.

Alongside our developing but yet still poor understanding of how exactly treatments and therapies work, even where we ‘know’ that they do, it is therefore impossible to pinpoint and prescribe a very exact treatment or approach for a specific individual’s neurology, type of insult and likely natural recovery.

This makes us very cautious on positive predictions of recovery. We would hate to promise and not deliver, we don’t want to build ‘false hope’ to disappoint or let down clients and their loved ones. Thus we tend to err on the side of caution.

Added to this, it can be hardest of all to predict at earlier stages and a bit easier to see the trajectory as things develop over time.

Most clients and their nearest and dearest are new to the complex world of neurological injuries. Often they are happy at the initial survival when it was perhaps touch and go for a while.

Later down the line conversations of rehab potential are often had, commonly when services are working toward discharge or a slower stream rehab scenario. At this stage, clients and families often feel we are writing them off.

They see potential. Disagreements can ensue.

This is difficult – we don’t want to give false hope, yet we do (presumably) want each person to progress as far as possible.

I’ve never in my 30-plus years in this field met a therapist who didn’t want their patients to achieve the best possible results. Yet I have observed many differences of opinion between families and treating professionals, between professionals themselves and between predictions and actual eventual results.

This leads me to think of all predictions of potential – from professionals and non-professionals – as hypotheses.

Previously I listed the vast array of factors we have yet to fully understand, but which in combination must be what gives rise to the variety and individuality of each neurological presentation we meet.

From these many influencing elements, we must draw up hypotheses – and it is perfectly possible to have many and opposing hypotheses at any one time.

Hypotheses are a tool by which it is possible to identify each ‘best guess’ based on the information and understanding that is available.

Once proposed, the function of the hypothesis is to act as a statement of a possible outcome which can then be tested to see if it can be supported or not.

The language of the hypothesis gives a clear, inclusive and non-confrontational way to discuss differences of opinion.

In effect it is face-saving if outcomes are not what any hypothesiser suggested.

It allows everyone to feel heard and that their thoughts and observations have been considered.

Even more importantly, it allows goals and treatment plans to be built around testing the hypotheses that have evolved, lessening the risk of the client missing out on opportunities to improve.

Where progress is not made as hoped for, it facilitates healthier conversations and supports adjustment; in a way that doesn’t happen when the client and family remain at odds with treating professionals because they don’t feel heard and may feel they see things that the teams do not.

Families know their person and do indeed see things – consider, for example, the scenario in rehab centres and care homes especially, where there are many people on and off shift over the course of a few months.

Some – many – may know the client pretty well, but they are not spending several hours every day between the times when care and rehab inputs may shape what happens.

The family member who comes in – and regularly spends perhaps many hours with the person – often reports observations which differ from those of the professionals.

When not seen through professional eyes with their ‘trained assessment filters’, this information is often given less weight.

In my experience it would often have been wrong to dismiss this potentially valuable additional information as though the family see through ‘hope filters’ that are so distorting they cannot be a true measure.

I therefore make an argument to:
> Hypothesise
> Hunt down potential in whatever time you have to spend – robustly test any reasonable hypotheses proposed
> Measure and record directly to support or not a hypothesis
> Set timeframes for testing each hypothesis
> Educate clients and families about what makes a hypothesis – they may need to hypothesise in the longer term
> Allow those involved across the team and, beyond, have alternative opposite hypotheses – just test them!

Let’s stop thinking we know and start experimenting more with what is in front of us, using the evidence base we have but being mindful that we are still a long way from understanding enough to preach rehabilitation potential as a ‘truth’.

Vicki Gilman is a neurorehabilitationist and case manager at Social Return Case Management.

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