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The MS secret that sparked a movement

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“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.

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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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