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On the road to reinvention

London actor and creative Byron Konizi has emerged from years battling the effects of brain injury with a plan to help others like him, as Andrew Mernin reports.

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Byron Konizi wants to do away with the word ‘rehabilitation’. He believes he has a better term for brain injury recovery. But this is no lexical whimsy.

His conclusion comes after a decades-long journey into the world of neurological treatment, to the brink of death and back again.

It started with a bike ride at age six that sent him freewheeling onto another life trajectory.

He fell off, sustaining a head injury – the first in a series of traumatic brain experiences in his life.

These dark chapters have shaped a new organisation that wants to bring about a post-brain injury revolution in the UK.

“After the first accident I had stitches but then about a year later started having more serious problems.

I’d be in excruciating pain, in a state of agony, but the doctor said I was fine and probably just wanted time off school.

“Eventually they did a brain scan and there was swelling and bleeding and I was rushed in for emergency surgery. I would have been a goner if they’d waited any longer.”

He had to relearn to walk and talk and, following intermittent bouts of unconsciousness, faced more brain surgery to fix problems with the original operation. He also developed epilepsy.

“I couldn’t read or write for a while after that, although strangely I became really good at chess and won the borough chess competition.”

A further scare followed when doctors spotted an anomaly on his brainstem. They monitored it over six months and Byron’s family were told that he could be in grave danger.

“During that time, I did the whole Disneyland thing because we didn’t know how long I’d be around for,” Byron (pictured as a boy in hospital) says.

Thankfully the anomaly didn’t progress and hasn’t since, although it is regularly monitored.

“I then spent my teens trying to recover and was on lots of heavy drugs which was interesting.

“I was really good at some things but an absolute disaster at others. I found it difficult to participate in all sorts of things. I tried to study for my GCSEs but felt I was coming up against intellectual bullies who would give me a hard time because my concentration and memory were impaired.

“I retained intelligence but just couldn’t keep up with the other kids because my brain wasn’t functioning as it should have been. I was good at short burst stuff but anything that required me to concentrate and persevere I couldn’t do, I would just drift off.

“I went off the rails and also became quite depressed and anxious because I didn’t fit in and had to seek help.”

Despite these challenges, his creative flair shone through and he was accepted at the world renowned art college St Martin’s in London.

He also practiced performing arts and song-writing in his spare time.

Cognitive impairments persisted, however, and he struggled to cope with the rigours of his education and dropped out.

Byron was then able to access neuro-rehab services in Cambridge which “helped me to understand my brain injury”.

“I got back to my studies having been accepted back at St Martin’s but started realising there was always a barrier to how far I could go because there was always administration, paperwork and bureaucracy that my brain couldn’t cope with.”

By his early 20s, he was working as a graphic artist and designer and secured a position in the London Mayor’s office as an adviser for inclusivity and equality.

Career highlights included helping to design the London 2012 Olympics mascot and creating a tube map for people with disabilities and certain health conditions.

“I also wanted to set up a charity to help people like me but I just couldn’t do it.

“Everywhere I’d go to get funding and support, it was all paperwork and administration, which I couldn’t do. It was ironic since that’s exactly the sort of thing I wanted my organisation to help people with.”

At age 30, Byron sustained yet another brain injury, from “a whack on the back of the head in Central London” which he can’t discuss in detail for legal reasons.

“I had to have all the old surgery redone. Following the operation I lost my sight for a period of time and I was very poorly.”

The incident came just as a flourishing career as an actor was developing, having featured in various TV and radio productions, including Zoe Ball’s Book Club and the hospital drama Casualty.

“Everything fell apart again and I had to spend the next year recovering.”

That wasn’t the final curtain for his acting career though. In 2017 he was the lead in the short film I used to be famous, which won several independent film awards and was shown in film festivals across the globe.

Byron played a musically gifted man with autism, alongside Naomi Ackie, who is now featuring in the latest Star Wars blockbuster.

The role prompted a letter of praise from Sir Roger Deakins, the cinematographer best known for work on the films of the Coen brothers, Sam Mendes, and Denis Villeneuve.

But his big passion project now is helping other people affected by long-term health conditions, including brain injury.

“I had a lot of sadness about the mistreatment of people with neurological conditions.

“Two close friends had died and I’d lost another friend I’d made while in hospital having surgery and I just wanted to do something to help people like those I’d lost.

“I’d also been involved in the brain injury APPG (all-party parliamentary group) at Westminster and spoke out quite angrily at what I thought was a failure to properly support people with brain injury in this country.

“The government could save millions of pounds and many lives if it addressed the issue which I didn’t feel was being taken seriously enough.”

Out of these experiences – and all that has passed since he came off his bike as a six-year-old – came his new innovation UDAV, “the world’s first Cocooge centre”. The word Cocooge (pronounced cocooj) is very significant to Byron.

“This is our challenge to the use of the term ‘rehabilitation’ in relation to neurological trauma.

“I believe ‘rehabilitation’ to be mostly inappropriate and controversial because it is rare that people are truly rehabilitated following a neurological trauma.

“The term can perhaps be seen as creating an unachievable goal and possibly false hope for many. Rehabilitation suggests the objective is to return to one’s original state.

“Cocooge better describes the actual process following a neurological trauma. It’s a combination of cocoon, meaning to incubate, and refuge. It means the process of protected incubation that immediately precedes reinvention.

“Like a caterpillar emerging as a butterfly, it suggests that an irreversible change has taken place.

“From my experience, this is a crucial stage in progressing to the next stage in life, perhaps even to something far greater than their original state.”

Byron has opened what he hopes will be the first Cocooge centre of many in his native Hackney in North London.

It is run under the umbrella of the charitable organisation he founded, UDAV.

It is designed for people marginalised due to the fallout of brain injuries, neurological conditions or other long-term health conditions.

“The aim is to help them to reinvent themselves in a way that allows them to thrive, in their future careers and their lives generally.

“There’s a glass ceiling for many people with neurological conditions. As soon as you want to do something people start bombarding you with paperwork, admin, asking you to go through processes that you can’t do.

“So then you’re asking yourself where do I go in life? What do I do? And you end up isolated and alone.

“So what I’ve created is effectively a community centre that gives people a sense of belonging, and supports and protects them.”

Through creative activities, bringing together a cast of arts and culture groups and practitioners, the centre’s overriding aim is to help people with neurological impairments “to evolve” rather than stagnate in life.

It’s early days for the organisation but current initiatives include a photography studio at the centre, sign language lessons and various art and music projects.

“A lot of the people we’re helping actually worked in creative sectors but had to stop because of their trauma. For example, we have a lady who used to be a TV producer whose career ended because of a brain injury, we also have an artist with PTSD and a photographer with a brain injury.

“All of these people are really good at what they do but because of their injuries and conditions, they can no longer do them professionally.

“We pull them in and support them through workshops, health initiatives and other activities which keep them busy, helping them to evolve. But also they check in here just to see their friends.”

One member is a photographer and survivor of multiple strokes.

“He’s a really good photographer but he can’t do the social stuff required to arrange the models and so on.

“We’ve not only provided him the premises but also arranged for fashion designers and models with long- term medical conditions to come in and work with him. We’ve also got a brain injured graphic designer, so it all fits together.

“We basically help them with the things they can’t do. We all work together and make good things happen and give everyone something to belong to.”

The launch of the organisation has been backed by London property developer and entrepreneur Jack Baswary who provided UDAV with the necessary support needed to get it off the ground.

UDAV is keen to work with further investors and partners as it aims to open Cocooge centres across the UK and internationally too.

For more information see www.udav.world

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Interviews

Cognitive Rehab Coach – harnessing the power of remote therapy

Inspired by seeing the impact digital could make in rehab, Natalie Mackenzie has gone on to build an internationally-successful business

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Out of the necessity to pivot to digital during the early days of the pandemic, an international online business – The Cognitive Rehab Coach – has been created to support people living with the impact of concussion and brain injury around the world. 

The Cognitive Rehab Coach was born from seeing how effective remote support could be for clients who are eager and able to embrace it, with people from the United States to New Zealand now benefitting from therapy delivered from the UK. 

Founder Natalie Mackenzie, a highly-esteemed cognitive rehab therapist and also director of BIS Services, runs both individual and group sessions across the globe – something she admits she embarked on from the greater acceptance of the quality and impact of virtual therapy which has come from COVID-19. 

“I still do client work and love doing client work, but the challenges of running a business often mean you can’t do as much as you’d like. You can get very lost in the running of a business when you’re a clinician. So this has been very interesting and led by the changes in digital offering we’ve seen from COVID,” she says. 

“Through delivering therapy this way, I can do a large amount of client work with much less travel time and greater reach.

“With the BIS, we can spend anywhere between two and eight hours with a client. I’ve got clients who are two hours away, so I can spend six hours of my day only seeing a client for two hours. 

“But with the Cognitive Rehab Coach, I can spend six hours online with six different different groups or six different clients. It’s kind of brought back the reason why I love the work that I do.

“Clients can be a bit more autonomous and self-led with the learning and assignments I give them, so they can be shorter packages, but with the same level of information they’re being given. 

“That also led on to me doing group programmes. That kind of one-to-many offering through small groups, in addition to the one-to-one sessions, are proving to be really effective. 

“But it was through what we did with BIS that showed me what was and wasn’t possible. The virtual timetable was a huge learning curve for me in terms of what clients will tolerate right in a group online setting – which at BIS is not a lot – whereas the concussion and post-concussion syndrome demographic find that slightly easier. There have been a lot of lessons.”

And the lessons in what was possible also extended into what was essentially a ‘needs must’. 

For many clients at BIS Services – which delivers innovative in-person cognitive rehabilitation to clients living with brain injury and neurological problems across the country – the experience of digital adoption into therapy was rather more challenging. 

“We did take our virtual timetable online for a period of time, we did pivot to adapt to the challenges of staffing and keeping clients and staff safe,” she says. 

“But now, the only time we go digitally is if someone is in isolation and we can flip back into the online support. We do face the same challenges with engagement and being able to functionally practice things with clients, but at least we know it will be for a short period of time. And the transition is much easier now, too. 

“But for BIS and our team of RAs (rehab assistants), all of whom have been specifically matched to each client, wherever possible, we’ll do face to face. But although that’s from a therapy point of view, that’s not to say digital hasn’t been really important in many other ways.”

But while Kent-based BIS has not adopted digital as a core part of its therapy offering to clients, it has proven to be effective in other ways. Through the creation of online events and opportunities, clients continued to be challenged and stimulated. 

“Our weekly quiz night became a therapeutic activity, as well as a bit of fun,” says Natalie. 

“We had a group of people who really got on well, but you’d probably never have put those people in a room together. It was the one it was the one activity that we kept going for the longest because clients were so engaged in it. 

“We rotated themes and gave clients the opportunity to write a quiz themselves, and we know hours of work went into that 45-minute quiz. It was a lovely thing to see.

“We also did a couple of comedy nights where the clients did comedy for us, and we would record it for them. I thought that was really brave to do that in front of your peers. Then the following week, the client would then review it as part of their learning to see what they wanted to improve on.

“These were ways in which Zoom did really deliver some great benefits to us.”

And in terms of its impact on how BIS operates, technology has also delivered benefits in terms of staff training and supervision. 

With 45 rehab assistants across the South of England, and extending as far north as Manchester, the opportunity to unite the team online rather than in person has been a very welcome opportunity. 

“They’re all so busy with clients that to even find one day a quarter where we bring everyone in for training can be really prohibitive,” says Natalie. 

“But now, I’ll deliver it live for any staff who can’t be here in person, and then it’s made available on our virtual library. For supervisions too, you don’t want to have people coming down from Manchester, spending all those hours travelling, when you can do it online now.”

Online training and learning has been a key area of development and acceptance, within BIS and for countless other organisations around the world. For Natalie too, she has embarked on her own digital learning experience, securing qualification as an ADHD coach. 

“I have a lot of brain injured clients with ADHD, but there isn’t an ADHD coaching course in the UK. I ended up doing a year-long course in America and the ability to train digitally has been amazing,” she says. 

“While the opportunity would have been available before COVID, I guess it wasn’t as accepted, my preference would probably have been face to face. But now, there is much greater awareness and acceptance, because it works and we’re all seeing that.”

Going forward, digital will continue to be a key part in the administration role of BIS, and of course will be fundamental to the continued growth of the Cognitive Rehab Coach – although the early experiences of COVID showed Natalie and her team the need to avoid becoming over-reliant on its use for some very human reasons. 

“In clinical work, we’re not used to being on computers for six or seven hours a day, let alone the challenges of talking pretty continuously for that long,” says Natalie. 

“We had really bad headaches and were just so tired, we even started having problems with our vision. I remember losing my voice for a couple of days too. 

“But now, we have got into what I think is a good working pattern, where we can flip to digital for our clients if we need, but we’ve learnt what works and what doesn’t. We are now using that to our advantage and making it work best for everyone.”

  • Natalie will be speaking at the Virtually Successful conference next week, organised by Remote Rehab in association with NR Times. For more information and to sign up, visit here

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Interviews

Think Therapy 1st – ‘Never say never’

NR Times learns more about the Specialist Rehabilitation Occupational Therapy provider’s ‘can do’ approach to rehab

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‘You’ll never be able to’ is a phrase the team at Think Therapy 1st readily admit to actively fighting against. It certainly isn’t in their vocabulary when it comes to how they work with clients. 

“So many people are almost written off by medical professionals, even at the start of their rehab journey, but you’ll never hear that from us,” says managing director Helen Merfield.

“Instead of just saying ‘you’ll never be able to walk again’, if it’s remotely possible, we’ll do absolutely everything we can to get them walking again.”

And Specialist Rehabilitation Occupational Therapy (SROT) provider Think Therapy 1st has a stellar record when it comes to delivering such life-changing outcomes for clients across the country, in home and community-based settings.

From the woman told she’d never be able to walk again, who, following support from the team, was able to walk three miles around an air ambulance field with a walking frame to raise money for their charity. To the man told he’d never be able to live unsupported, who now lives completely independently and looks after his son every other weekend.

“We also had an 84 year-old lady who played badminton five or six times a week; I think she was semi-professional in her youth. She was told ‘you’ll never play badminton again’ and that destroyed her soul to start with,” recalls Helen, an ex-military nurse.

“Luckily, we said ‘Don’t listen to them. We’ll get you playing badminton again’. And we did. Five days a week.

“We had to adapt her serve, sometimes she used a chair, but she was playing and she was happy, and that’s exactly what we want to achieve for our clients.”

That commitment to overcoming the seemingly impossible is what Think Therapy 1st (TT1st) believes is its real difference.

By putting clients at the heart of the rehab, empowering them to take the lead on what they want to do, the TT1st OTs combine challenging and stimulating activities into therapy sessions which will enable them to progress.

“We wrap therapy around small, everyday tasks, and then build on that so they can get to where they need to be and get their lives back on track,” says Helen, whose fellow owner-directors are two OTs and a social worker.

“We explain the process of what we’re doing and why we’re doing it. So, for example, we might go on a woodland walk, which is maybe something they used to enjoy but haven’t done for a long time, they’ll also be working on their exercise tolerance, their coordination and general mobility.

“We’ll explain what we’re doing and why we’re doing it, and then they’re much more engaged in the process.”

TT1st also has a dedicated Children and Young Adults Service (CAYAS), which delivers specific paediatric support, provided with the same ‘never say never’ determination of its adult service.

“We had one boy who had a head injury, but prior to that he was up at 5am every day doing his newspaper round,” says Fiona Peters, CAYAS service lead.

“So, one of the first things I did with him was get him to draw me the map of his route, and then we went to walk it. And that helped him realise he’d forgotten part of it, but it was also really healing for him because he dropped in on a few people he used to deliver the newspapers to.

“Working with parents, I think it’s about drip feeding information. At first, they can be hypervigilant, wrapping their child in cotton wool, which

Helen Merfield and Fiona Peters

is understandable, protecting them from challenges.

“Our role is to support the parents to feel confident in confronting challenges rather than shy away or deny their children the opportunities these present to bring about positive change. It’s about ensuring the parents are aware of and engaged in the therapeutic process.”

“We really focus on embedding the learning, not through reams of paper or stuff to read on the computer; we help them to feel it, to understand it. And I feel like that’s where our speciality lies, in supporting them to understand their situation and to know where they can head with it,” says Helen.

“In what we do, the OT would be the head of the multidisciplinary team but we are standing arm in arm with the client.

“If they need physio, speech and language therapy, neuropsychology, any other modalities, the OT would work with them to help them engage those people. We make sure that we are aligning our goals in a really multidisciplinary way.

“For example, any neuropsychology outcomes would be really informative for our process of what to concentrate on with the client. We try to make sure that the goals are aligned so that it works in the client’s best interest at all times.

“But I think where we really do go that extra mile is in building in a relapse prevention plan whilst we are still involved, so people recognise what they’re doing, while they’re doing it. They are at the centre of the process – we don’t just want people to have things done to them, we want them to be part of it.”

Fiona adds: “Historically, people have been passive recipients of the medical model, just waiting for medical recommendations. We are changing the locus of control so the clients are full participants in their own rehab journey.

“We help our clients understand, that in order to get to the kitchen to make a cup of tea, which is what they really want to do, they could be doing things of benefit to their recovery – flexing their leg, building their standing tolerance, co-ordination, thinking, planning, and other executive functions as well.”

TT1st are also very definite about the time period they spend supporting a client – a maximum of 12 months of hands-on therapy, with up to three-months transition period.

“The analogy I like to use for transition is that it’s like having stabilisers on a bike, once you take the stabilisers off, you don’t just let them go and hope for the best,” says Helen.

“We want a person to be as independent as possible when we leave; they always know they can come to us if there’s a crisis or if something new is happening in their life, but the purpose of what we do is to train them and empower them to be autonomous.”

TT1st also has dedicated functional management of pain, fatigue and anxiety programmes. HELP – Holistic Education for Living with Pain, HEAL – Holistic Education for Anxiety Liberation, and  FEEL – Fatigue Education & Exploration for Living which correlate with NICE guidelines.

“We were finding that a lot of our clients suffered from pain, fatigue and anxiety when we met them, and the impact of having been left for a long time, without any support for this, had made things worse,” says Helen.

“People were being referred to us late; they’ve often become quite entrenched in the medicalised version of their health, and pain becomes a debilitating factor.

“The quicker we get them, no matter what the injury, the quicker we can get them better, because they haven’t become entrenched in the medical model.

“In our experience, pain is something doctors often disregard, but through holistic education, we can help make lasting changes to how people control and live with pain.”

The business, established six years ago, has built a strong reputation for its service – and particularly its outcomes – and continues to expand. With a core team of in-house OTs, it has growing numbers of associates across the country who deliver its bespoke support to clients.

“Cases come to us from all over the country, and we identify local OTs with the appropriate skills to work with each client,” says Helen.

“One of our in-house OTs acts as the long-arm mentor on every case. We meet monthly to review each case, and every single one is discussed by all the team. So, there will be seven OTs and a nurse looking at all the cases, to make sure they’re on track.”

Fiona adds: “I think OTs are used to working within boundaries, but when they join us, they suddenly see they have limitless potential.

“We believe that if you can clinically reason why something is beneficial to a client, we can generally find a way of supporting that, and finding the funding to achieve it.”

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Case management

BABICM – rising to the post-pandemic challenges and opportunities

Vicki Gilman, chair of BABICM, shares her priorities for the organisation as case management looks to a new future

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Vicki Gilman has taken up the post of chair of the British Association of Brain Injury & Complex Case Management (BABICM) at a hugely important time as case management moves into a new post-pandemic chapter, following an unprecedented period where case managers rose to the diverse challenges presented by COVID-19 and helped to create a new future. 

A future where technology and virtual communication will feature like never before; where the need to work in collaboration has never been greater; and where the creation of the Institute of Registered Case Managers (IRCM) will enable registration of case managers for the first time. 

While undoubtedly an exciting time with huge potential for case management, the challenges – and opportunities – for BABICM, as it too builds for the future on the foundations of its 25 years of expertise, are plenty. 

“Becoming chair was something that was first suggested to me about three years ago, and at that time I had no idea, as no-one did, that we would all see such huge change in our lives,” Vicki tells NR Times. 

“There were several things in the back of my mind then that I thought might be key themes – some of them remain the same despite what has happened since, although by no means all of them. I think a lot has been learned over the past 18 months that I don’t think we will go back from. So, in many ways, this marks a fresh start.

“I’m immensely proud of how the whole case management sector responded, how we stepped up to the challenges and with such speed. Case managers are used to looking at complex scenarios in unique circumstances and working to find ways forward within the context of each case.

“The pandemic served up additional challenges which prompted a lot of innovation and different and new thinking, with plenty of opportunities. 

“As ever in case management we have taken the learning from everything we do, but this time case managers – along with everyone else – were juggling the unique changes in their own lives such as homeschooling children and supporting friends, neighbours and family members whilst continuing with their highly complex and confidential work to support each individual case by case.”

Vicki, managing director of Social Return Case Management, takes over the BABICM chair from Angela Kerr, who is now chair of the IRCM. BABICM will continue to play a central role in the ongoing development of the body, as a founding member, which hopes to secure accreditation from the Professional Standards Authority (PSA) in the near future.  

An experienced case manager, health entrepreneur and clinical specialist neurophysiotherapist, Vicki spent six years on the BABICM Council, returning last year for a preparatory period before taking the chair.

Building on her experience of specialist rehabilitation, expert witness work and case management and being part of BABICM, while taking inspiration from the events of the past 18 months and impending future changes, Vicki has identified a number of priorities to address during her time at the helm. 

  • Equity and belonging 

“I have starting educating myself to a greater degree and have had a lot of conversations with people who know a lot more than me about equality, diversity and inclusion,” says Vicki.

“This is actually quite challenging and I don’t personally know enough yet. I do know that both the organisation and I need to do more. As I go on my journey, it is my aim to find allies and to bring other people into learning more with me. Together we can make BABICM better place.”

“It follows that our increasing membership means we have greater diversity, and it is not enough to say ‘We don’t discriminate’.”

Vicki says equity and belonging must be sentiments which underpin BABICM. “It is a really important to ensure a greater understanding is threaded through the work of BABICM,” she says. 

“For me, equity means more than equality, and we want to help people feel they belong here. It’s not enough just to say these words.” 

  • Collaboration

“We need to strengthen links we already have and collaborate with other organisations who are important to our members through the work they do,” says Vicki. 

“Angela has done an amazing job to strengthen and move the organisation forward, of identifying organisations and allies we should be working in collaboration with and creating links with people at the right level – organisations such as the CQC, Court of Protection, UKABIF, some education establishments, to name but a few. 

“There are lots of ways we can deepen and develop on that, and as we come out of the pandemic there will be more opportunities. Zoom calls are really time-saving and effective, but hopefully we will also have the option to do things in person again going forward.” 

  • The future as a profession with registration

One of the most significant changes in case management, the creation of the IRCM, is set to professionalise and regulate case managers in a sector-changing move. 

“We will continue to support the goals and development of the IRCM, it is by no means done and we need to continue the work here,” says Vicki. 

“We are fully supportive of the direction of travel and fully endorse registration for case managers. This is a way for the public to be protected specifically in the realm of case management and for case managers to be able to demonstrate that.”

  • Training and learning

“I want to continue the development of the high-quality learning and training opportunities available to our membership, but also to those outside,” she says. 

“We aim to keep it very relevant to current clinical and professional needs, keeping ahead of the curve and making sure that what we are offering is of the highest quality. As professionals working with complex cases, I can only see that need developing further. 

“In the last few years BABICM has really showed its strength as the leading provider of education and training for case managers working with complex cases. The feedback we’ve received for our courses has been tremendous and that has continued even during the pandemic. Training will remain key and grow in importance.”

  • Research 

“I’m very keen to increase the involvement of BABICM and its membership in research around case management related issues. I want us to lead the way in with research into evidence-based practice for people with complex needs,” says Vicki. 

BABICM has recently been involved in a number of research projects, working alongside the University of Plymouth. In yet to be published findings, the team has studied how case managers and clients alike have adapted to the pandemic. 

“There is research out there which supports the work of case management, but we are taking greater responsibility to add to that evidence base and that is something I foresee will increase and needs our members to be involved in,” she says.

“This will of course add even further to our library of resources to support the work of case managers.” 

  • Providing useful resources to members 

“I see us to stepping up in provision of information to assist across our membership within legal, clinical and professional aspects of their work,” says Vicki.

“Those involved in the case management of complexity and those working with case managers need resources that are tailored to their needs. 

“We already do this in many ways via our website with recorded webinar content, upcoming training and development events, publishing our standards and competencies and signposting and links to other sources of support regular bulletins. Our website is proving a very useful resource library which is seeing growing traffic, as it assists our members and others. 

“As our members apply for registration with the IRCM there will be an even greater requirement to demonstrate what case managers are doing and whether they are meeting the standards, so we need to continue to build relevant resources to support this need.”

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