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Stroke

Surviving stroke: the transition from hospital to home 

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After a life-changing event such as a stroke or the onset of most neurological, orthopaedic and paediatric conditions, physical rehabilitation is key to people restoring their quality of life.

In the hospital setting, individuals should receive gold standard rehab treatment required to allow them to be discharged. 

But upon returning home, they are faced with the harsh reality of, largely, learning to look after themselves and the challenges that come with it, along with readjusting to maintain central aspects of their lives before their stroke, such as relationships, finances, careers and other responsibilities. 

Here at GripAble, we are privileged to have the valuable insights and perspective of someone who has been on this very journey as our ambassador. After a rare brain stem stroke at the age of 39, Kate Allatt went on to develop locked-in syndrome. Doctors said she’d never walk, talk or be able to use her arms again, but she defied all predictions and walked out of hospital.

For Kate, however, the hard work didn’t end there and continuing her rehab process from home brought a whole host of new challenges for her to face. 

In this blog, Kate describes these challenges, the things that helped her to restore her independence and useful resources available to stroke survivors to help them be the best version of themselves, emotionally, mentally and physically. 

Adjusting to life at home

Towards the end of my 11-month hospital stay, I was feeling relatively fit and well, and felt in some sense that I had come through the stroke and its after-effects. Truthfully, I was just waiting to be discharged so I could be with my children again.

Walking out of hospital after previously being paralysed and in a medically induced coma felt like a huge victory but once I arrived home, I was faced with the reality of my situation and what I had lost as a result of my stroke. 

Though I was no longer in the hospital setting that my family were so used to seeing me in, I still wasn’t well. It was difficult to slot back into the life I had lived before, as well as seeing loved ones continue with their own lives, when I was still doubly incontinent, relied on a frame to walk and had PTSD and hallucinations from the whole experience. 

This emotional distress was heightened by the loss of purpose, confidence and self-esteem I felt due to the dramatic way in which my stroke had impacted on my life. I remember feeling shocked by the lack of information and resources available to stroke survivors – of course, I received helpful medical advice regarding my physical rehab, but where was the support to help people navigate their personal, professional, financial and intimate lives? 

How could I keep up my relationships and friendships with others, as well as my ability to parent my children, after such a life-altering event had occurred? 

Not only this, but my family lacked the guidance and support they needed on what to expect from me after my stroke, for example, the behavioural changes I was likely to experience such as mood swings, agitation and feelings of loneliness, as well as the long-term physical and cognitive problems, which can include memory loss, confusion, difficulty processing information and poor judgement.

A heartbreaking moment for me was overhearing my son, who was eight at the time, saying to his dad: “Mum’s back, but not as she was.” 

I realised that my children were also broken by the experience of not having me there for the last 11 months and seeing the way I was now. I tried my best to help my children by seeking the help of child psychologists, but in order to receive help, people must be willing to accept it, which my young children, like many others their age, found difficult. 

My attempts to search for helpful information and guidance online about locked-in syndrome, the condition I had developed as a result of my stroke, were sadly futile at the time. 

I also found that a lot of the advice and guidance available to stroke survivors was aimed at older people – alarming when over a third of the 100,000 people who have a stroke each year are under 60-year-olds. I soon discovered some closed groups for stroke survivors on social media but found them to be quite negative and unhelpful spaces, and not somewhere I felt I could safely share my personal issues and story.

 Getting back on track 

I realised that for stroke survivors to make the best recovery possible, support from and connection with peers who truly understand them and the challenges they face is crucial. There also needed to be an acknowledgement of the fact all stroke survivors are different, with different experiences, issues and aims for the future. 

This led me to set up Fighting Strokes – a world-wide advocacy charity that raises awareness of stroke recovery, informs caregivers and health professionals working with stroke survivors and provides support for family and friends of stroke survivors, as well as practical patient support. 

Something which helped me further on down the line was simply injecting some fun back into my life again. In my opinion, stroke survivors need rehab exercises that are simple, fun and ultimately don’t feel like rehab. 

Repetition is also key – studies show that the more repetition and strength training a person performs, the greater their chance of restoring movement. 

In hospital, rehab provided opportunities for one-to-one engagement with trained nurses and therapists, which made doing rehab on my own at home all the more disheartening. 

But rehab exercises and equipment – like GripAble – that provide fun activities and show you how you are doing from home can put joy back into the mundane and restore some of the self-esteem that can be diminished with brain injury. 

With a renewed focus on what I most wanted to achieve from my rehab and recovery process, which was to be able to hug my children and tell them I loved them again, I was able to take control of my own recovery from home. I was also introduced to a personal trainer, who believed in me and what mattered to me, and played an important part in helping me to adjust to this new version of myself. He worked as hard as I did to restore my confidence, and against all odds, even managed to help me run just one year after my stroke.

Moving forward

After a stroke or any other life changing medical event, people deserve to have access to the right resources, opportunities and equipment that can help them be the very best they can be. 

It also makes complete business and economic sense to improve the transition from hospital to home – with access to better support as they go through this process, people would feel much less isolated and traumatised. 

Better patient outcomes equate to greater cost savings with reduced use of prescription drugs like antidepressants, fewer GP appointment and emergency hospital visits and less reliance on NHS care and resources, as well as enabling people to get back into work in some form or another.

As GripAble ambassador, I am pleased to be working with GripAble on a number of initiatives to enhance physical, emotional and mental support. Our ‘Stroke Buddy’ campaign will include regular live coaching webchats, live Twitter chats, social media groups and forums for peer mentoring and support from other stroke survivors. 

For more information, message me on Twitter @KateAllatt and follow @GripAble_Rehab on Twitter and Instagram for updates. 

Useful resources for stroke survivors, their families and caregivers:

News

What causes a stroke?

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Ischemic and hemorrhagic are the two main types of stroke

Over 100,000 people in the UK suffer a stroke each year, with there currently being around 1.2 million survivors living in the country.

Many people note that despite how common strokes are they remain unaware of what the actual causes of a stroke are.

Depending on which of the two types develops, causes and outcomes can differ.

What both have in common is they restrict blood flow to the brain. This leads to a reduction in the brain’s oxygen levels, which can cause tissue damage.

Here, NR Times breaks down why a stroke may occur and what risk factors there are behind each different type.

What are the different types of stroke?

There are two main types of strokes: ischaemic and hemorrhagic.

Ischemic strokes make up nearly 90 percent of all cases and they materialise when an artery which provides blood and oxygen to the brain becomes blocked. 

A hemorrhagic stroke is much less common, but happens when an artery leading to the brain bursts and starts to leak blood around or in the brain.

Causes of an ischaemic stroke

The brain is only able to function properly when its arteries supply it with oxygen-rich blood, meaning any blockages can cause lasting damage.

With a lack of blood flow, the brain is unable to make enough energy to work. If this consists for more than a few minutes, brain cells will begin to die.

This is exactly what happens in an ischaemic stroke, but there are a range of reasons as to why these blockages develop.

One of the main causes is when the arteries around the head narrow, which makes it harder for the blood to pass through.

This can also lead to something called atherosclerosis, which is where substances in the blood (such as fat or cholesterol) stick to the sides of the arteries.

Blood can build up on these deposits, causing a further increase in pressure and a reduction to the brain’s oxygen supply.

There are a number of reasons for these blockages, with the most common ones being around a person’s lifestyle.

For example, smoking can increase the risk of a stroke by up to 50 percent.

This is because nicotine not only narrows the arteries, but it also makes the heart beat faster, causing an increase in blood pressure.

Excessive alcohol intake, obesity and high cholesterol levels are also all listed as major risk factors when it comes to ischaemic strokes.

Problems with the arteries around the heart can also lead to an ischaemic stroke.

Irregular heartbeats, heart attacks and other irregularities around this area can again limit the blood’s oxygen levels.

Causes of a hemorrhagic stroke

Hemorrhagic strokes are most common in people ages 45 to 70, but they affect a lot more younger people than an ischaemic stroke.

These are caused after the arteries around the brain burst and cause bleeding.

Depending on where the artery is can affect the outcome of the hemorrhagic stroke.

If the bleeding occurs within the brain, blood shooting out at high pressure can kill some cells.

Bleeding on the surface increases the pressure in the protective layer between the brain and the skull, potentially causing more cell loss.

This bleeding is normally caused by chronically high blood pressure. In many cases, the increased pressure can cause the arteries to expand and weaken, meaning a split in them is more likely to take place.

A rarer cause of hemorrhagic stroke is where the blood vessels around the brain are connected abnormally, causing further stress on the brain. These are congenital (present at birth) but the reason for their occurrence is currently unknown.

Again, the best way to reduce the risk of an hemorrhagic stroke is to make healthy lifestyle choices.

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Stroke

‘Healthcare and individuals can both tackle stroke risk’

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“Stroke is a challenging, complex and difficult condition to treat and manage, and it requires both the healthcare and public to play a part in preventing, treating and managing it.”

Elizabeth Muchechetere, head of therapies (neuro rehabilitation) at neurological care centre British Home, shares her insight on a series of points around stroke and recovery, to help highlight the condition during Stroke Awareness Month. 

Anyone can be affected

British Home is a neurological care home with 80 residents – 34 per cent of our residents have been affected by stroke, and they all present differently, and therapy is tailored to suit presentation. 

These are people who never thought a stroke could happen to them and they are all from different walks of life.  

Engaging in rehabilitation can be challenging for our residents as they realise life has changed and they are required to put in a lot of work in their rehabilitation with the help and support of our dedicated therapy and care staff, and family input.  

I have seen how devastating this could be as at times during rehab, it is important to stop a session and give emotional support and explanation why rehabilitation is important as some may lose hope as the effects of stroke will have caused big changes in their lives.  

I have also noticed that those who have previously lived an active lifestyle tend to see more improvement than those who have not.  

Anyone can be affected by stroke!

The effects of stroke affect not only the person who has had a stroke, but families at times struggle to come to terms with the sudden vast changes and the teams supporting can also go through many challenges in giving treatment and rehabilitation.

Timing is everything

With one in four people being affected by stroke, these numbers are too high and we need to get them down. I believe stroke is still such a big issue within the UK due its complexity. 

We know it is an issue and we know the information is out there, but we are not ready, and if we are not ready, it can be detrimental. 

It can be disabling and is known to be one of the leading causes of death if one does not receive immediate and timely medical attention in the UK.

Treatment

Treatment and rehabilitation in my experience is slow and challenging and many take some time recover, but there is always hope. 

I have also noticed that those who have previously lived an active lifestyle tend to see more improvement than those who have not.

One big issue is that there can be long waiting lists for rehabilitation following discharge from hospital and discharge from follow up early supported discharge (ESD) rehabilitation in the community. 

Frustratingly some patients still require more rehabilitation, but may not be able to access it. As a result, 65 per cent of stroke survivors leave the hospital with a disability (The National Report – Stroke Association).

Tackle

According to Blood Pressure UK, stroke is a major cause of death in the UK and the largest cause of disability, but six out of 10 strokes could be prevented by managing blood pressure to a healthy level.

However, for every 10 people diagnosed with high blood pressure, seven remain undiagnosed and untreated, and this is more than 5.5 million people in England (NCVIN, 2016), meaning, not all cases are tracked so can’t be prevented. 

We now know the treatment of HBP significantly reduces the risk of strong among other conditions (Stroke statistics, 2017), however the number of people diagnosed as having HBP has consistently increased since 2005, (NHS Digital, 2016) and is not slowing down.

To tackle stroke and its effects, both the public and healthcare must have a part to play.

Healthcare continues to speak about stroke and how it affects individuals, but the public need to listen and be more aware of the vast information around stroke, its effects, symptoms, management of risks like high blood pressure, diabetes to mention a few.

Diabetes is reported to double the risk of stroke (a paper on Cardiovascular Disease Outcome Strategy by the Department of Health, 2013).

High cholesterol can increase the risk in developing a blood clot which can lead to a stroke therefore it is important to treat and manage it.

Alcohol consumption in large quantities increases the risk of having a stroke while smoking doubles the risk of death from stroke.

With all that in mind, the best way to help prevent a stroke is manage those underlying conditions, avoid smoking and alcohol, and eat a healthy diet, not forgetting regular exercise. 

Moderate exercise can reduce one’s risk of stroke by up to 27 per cent (Lee CD et al., 2003), while inactivity and a sedentary lifestyle increases risks of an ischaemic stroke by 50 per cent (WHO).

The Future

While there is hope as innovation in the healthcare industry is increasing and improving, there is still a need in the public balancing the stroke risk factors; high blood pressure (HBP), diabetes, high cholesterol, increased alcohol intake, smoking and lack of physical activity (Stroke statistics, 2017), which pose more challenges in stroke occurring and recovery.  

We all know what we need to do to help prevent stroke, so it is important we start practicing it.

Sadly some people leave home for work daily, possibly have a stroke at work and never return home. With stroke, life can vastly change without a warning and we all need to do better to change this. It is everyone’s duty, where possible, to take ownership of our health and well-being.

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Inpatient rehab

‘I’ll be forever grateful’

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After 88-year-old Philip Haines had a stroke and lost mobility in his left side, his bespoke rehabilitation enabled him to regain his independence. Here, to mark Stroke Awareness Month, he shares his story of recovery

 

“I’ll be forever grateful.” 

For 88-year-old Philip Haines, who lost mobility in his left side following a stroke, his thanks to those who helped him regain it are limitless. 

Philip, former secretary to the Anglican Diocese of Peterborough, admits being “hit for six” after his stroke, which was caused by a blood clot in his brain. 

His cerebral infarct left him with dense left hemiplegia, meaning he was unable to move his left arm and leg. While the blood clot was successfully removed, the stroke left Philip with cognitive challenges and difficulty in swallowing.

Philip was admitted to Askham Rehab from Peterborough City Hospital in November, where he was assessed by the multidisciplinary team and set clear goals, before being put on a specialist four-month programme specific to his needs.

And now, to mark Stroke Awareness Month, Philip is sharing his gratitude for the team at the specialist neurorehab community near Doddington, as well as to help show the life-changing effects such rehab can offer. 

“The stroke knocked me for six and changed my life dramatically, but every day I was met with a group of very enthusiastic physiotherapists who were trying to bring some life back into my left side,” says Philip, who returned home last month. 

“This whole journey has been a completely new experience, it’s almost like a rebirth. You always try to be positive, but it’s inevitable that you go through periods of feeling low. 

“The team’s enthusiasm helped pick me up during those low points. We got on fine, they were very helpful, and it was a real group effort in trying to bring life back into my muscles.”

When asked if he had any final words for the team that looked after him throughout his rehabilitation, Philip says simply: “Keep up the good work. I’ll be forever grateful.”

During his time at Askham Rehab, Philip was able to make use of the family-run community’s robotics and sensor assisted technology, with it being one of a small number of providers in the UK to offer a specialist robotic-led rehabilitation service. 

He used the MYRO table, a sensor-based surface with interactive applications, to aid upper limb movement and focus on balance, coordination, and cognitive training. 

With strokes being a specialist area at Askham Rehab, Philip also performed mirror therapy, hands-on therapy and functional tasks as part of his tailored programme, which soon led to a significant improvement in his mobility.

“Philip had access to all four of our disciplines; clinical psychology, physiotherapy, occupational therapy, and speech and language therapy,” says Sara Neaves, clinical lead and outpatients service manager at Askham Rehab. 

“It was clear from day one that Philip knew exactly what he wanted to achieve. This enabled us to set patient-centred goals with him, ensuring he was part of the process throughout his journey with us.

“Philip was fully independent before his stroke and enjoyed walking into Peterborough city centre every day for his lunch, so he was determined to get back on his feet. 

“He swiftly improved the mobility of his left upper limb through the use of our robotics and mirror therapy, and was soon able to transfer using a Molift with the assistance of two. 

“He also improved his swallowing through oral motor techniques and no longer needed thickening in his fluids.

“It has been extremely rewarding to see Philip come this far. He had a positive outlook on his rehabilitation journey with us from the offset. 

“His sister has also been an excellent support to him and due to our patient-centred care, his individualised programme has worked to his goals. 

“We’re delighted he’s now able to get back out and head into town again for his lunch outings with friends.”

Aliyyah-Begum Nasser, director at Askham, adds: “Philip’s journey at Askham encompasses what Stroke Awareness Month is all about; highlighting the strategies to improve the quality of life for persons recovering from the condition. 

“Our family-run community, which has more than 30 years’ experience, including 10 years of neurological rehabilitation expertise, prides itself on having comprehensive and specialist programmes in place to ensure those undergoing rehabilitation with us receive structured, high-quality care with a holistic approach.”

For more information on Askham Rehab, visit https://askhamrehab.com/.

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