“It’s not the cards you’re dealt that matters, it’s how you play them that counts.”
For Jessie Ace, this is a mantra that inspires her every day.
It has helped her overcome her career dreams and confidence being shattered by her multiple sclerosis (MS) diagnosis, and underpins the positivity that now enables her to inspire so many others with chronic illness around the world.
Through her DISabled to ENabled podcast, Jessie has built a global following of people who turn to her for inspiration, after turning around her life and outlook since being told she had MS at 22.
When the news was delivered, she had just graduated from university, was embarking on a career as an illustrator and had even clinched a book deal.
“I suddenly felt I had lost my purpose,” she says. “I had a degree that meant nothing, the business I’d spent two years painstakingly building up was gone, and I couldn’t be an illustrator which was my dream and what I had loved doing since I was a little girl.
“At first I woke up one morning paralysed down my left side, completely out of the blue, but then later I lost use of my right hand too.
“It was the worst time of my life. As a student, I had these ideas that great things were going to happen, but then it was all over.”
Then came the bewildering search for answers.
“The worst part was not knowing where to turn, or who to turn to. The lack of information about MS in general was really bad, but there was nothing for young people, nothing for a young person to relate to who had just been given this devastating news.
“I knew nothing about MS and the doctor who gave me my diagnosis just told me to Google it.
“There wasn’t even a leaflet, or any advice, recommendations on who to speak to, nothing.
“As you can imagine, I found every negative story there was through my searches online and it was very scary.”
Finding other young people experiencing what she was going through also seemed impossible.
“There are local MS support groups out there, but that did not feel like the place for a 22-year-old to be.
“Everyone else there was much further along in their MS journey, people were in their 50s and some were in wheelchairs, and the outlook immediately became really scary.
“The idea of what I thought my future would be really freaked me out and I became really depressed about it.”
Determined to get on with her life, Jessie took a job as a glass collector in a local club, then went back to university as a student ambassador, before finding a job as a graphic designer in fashion. But all the while, she kept her MS totally to herself.
“I didn’t tell anyone. You would look at me and think there’s nothing wrong with me as I don’t look ill. That is the thing with hidden illnesses like mine.
“I didn’t want to be pitied, or for people to make judgements, or to say ‘don’t lift that chair’. I just wanted to be me.
“I realised that the five people closest to you can shape your outlook and those around me gave me the support I needed.
“When you have a bad day, to have people close to you telling you that you can do this, you can get through it, tomorrow will be better, is so important.
“I also came across a book called ‘The Miracle Morning’, which helped me to build a positive mindset. My whole perspective on life began to shift.”
Spurred on by her wish to help support young people in her position, and with her new-found positive approach, Jessie began to share her experiences online.
“The way I got started building my confidence was by sharing my story on Facebook Live videos about four years after my diagnosis, while working on a wedding business. I’d never told anyone really about my diagnosis, so that was a scary thing for me.
“I mentioned on a video one day that I had MS and the response astounded me.
“Brides-to-be started asking for my advice for how they could navigate their wedding day with an invisible illness, how they could ‘pretty up’ their wheelchair or even how they could disguise their oxygen tank into their wedding dress.
“Before I knew it, people began reaching out to tell me about their illnesses.
“They said they had not shared their stories with anyone before, because they thought people wouldn’t get it. It gave me an opportunity to help others and helped me come to terms with my own illnesses.
“That was when I realised that my story was bigger than me and that my experiences could help people.” From there, Jessie’s podcast was born, alongside a Facebook group inspirationally-titled ENabled Warriors, which helps newly diagnosed people and provides a forum for those who don’t feel like they fit in with traditional groups.
Through its uplifting approach, thought-provoking content and often celebrity guests, the DISabled to ENabled podcast has become a hugely popular outlet for people young and old, with a loyal and growing following across the world.
“It absolutely makes my day to hear from someone that the podcast has helped them. I have been where many of them are, where they feel it is the end of everything, but sometimes it is just knowing that someone understands, and is there, that can make all the difference.
“Most podcasts like this are American, and I know a lot of people like that we are in the UK.
“Changing the support available for young people with MS is something I feel very strongly about, and we do have a lot of young people who interact with
us, but also a lot of older people too.
“I think for older people they perhaps haven’t had the chance to access something like this, so I know it has been welcomed.
“I want to help people have the confidence and the voice to share their experiences and their stories in the right way, as I know from my own experience how much this can help.”
Jessie, 29, is also teaching people how to make their own podcasts and plans to create a course which helps people to express themselves through writing, social media and the global online community.
She is also about to launch a book for people to use as a diary and planner, to keep a record of relevant information for themselves and medical professionals.
“I’ve created this for people to keep track of how they feel, their medication, hydration and the exercise they’ve done and there are daily sheets to complete.
“This can be really valuable to take to hospital appointments or your healthcare practitioner, instead of having to remember what you did on this specific date, you can have a record of it. It will hopefully lead to more productive appointments and outcomes,” she says.
“I have also taken inspiration from the book that helped me so much, The Miracle Morning. You can visualise how you want your day to go and the person you want to be.
“There are a series of ‘I am’ statements which can help shape your whole outlook for the day – to keep in mind that ‘I am confident’ or ‘I am full of energy’ can help you adapt mentality and give you a renewed focus, instead of thinking you are tired or today isn’t quite what you’d hoped.”
Having established herself as a prominent MS campaigner, Jessie has also become a writer and illustrator – reviving the dream she thought was lost – for many of the world’s biggest MS charities including the National MS Society, MS Society UK, Shift.MS and MS-UK.
She has also illustrated for Momentum magazine, MS Matters and New Pathways. From the dark days of her diagnosis, for Jessie, the future is full of positivity.
“When I was first diagnosed, I didn’t cope. I believed my life was gone. But now, it does feel great to be able to share my experiences with people who are just as scared as I was, and show them there is a way through, you can do this.
“Anyone who knows me will tell you I love quotes, and one that really resonates is ‘It’s not the cards you’re dealt that matters, it’s how you play them that counts.’ I think that’s really important.
“Having MS is not the end of anything, although it may seem it, and you are still capable of doing absolutely anything in life. Sometimes you just have to be a little more creative to learn how to do it. Once you get past that, don’t take ‘no’ for an answer.
“Never let anything stop you from what you want to do.”
Listen to Jessie’s podcasts at https://mmini.me/dtepodcast. Her book and planner will also be available via the website https://mmini.me/blog following its launch in April.
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
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
Think Therapy 1st – ‘Never say never’
NR Times learns more about the Specialist Rehabilitation Occupational Therapy provider’s ‘can do’ approach to rehab
‘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.
“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
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.”
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
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.”
“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.”
“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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