Would a jet pack enable you to live better? Our next tweetchat June 16th at 5pm BST!

Since November last year, I’ve been working closely  with the charity Devices 4 Dignity to conceptualise, plan and deliver a unique patient-led event to better understand patients unmet needs, who are living with long term conditions and it got me thinking. Why don’t we have a #strokerecovery  tweetchat on how we can better help recovering stroke survivors, live more independently, in their day-to-day lives?  Let’s remove ‘dis’ in disability and see if we can help stroke survivors, their families, therapists, researchers or companies come up with ideas to enable people more.

disABIlity

When I think of basic living activities that we do everyday like bathing, washing, dressing and going to the toilet.  There are also instrumental activities such as preparing meals, housecleaning and managing finances. Finally, there are meaningful personal and leisure activities like mindfulness, socialisation, or walking the dog either on foot of with an affordable, suitable mobility scooter!

Over the years, I have delivered a few speeches on assistive technology  I think of some of the things we have been told over the years, which you too may have come across.

‘I wish my panic alarm was waterproof and it looked less medical’

or

‘I wish I could remove my underwear with one hand when I go to the loo.’

or

‘I wish I could switch off all my lights and switches with one go.’

or

‘My catheter is so fiddly to fit’

or

‘What would help me improve my speaking voice?’

or

‘My bathroom looks like a hospital WC!’

or

‘I struggle to open my medicine packets.’

or

‘I feel so invisible in my wheelchair.’

or

‘I am so low. How to I help myself meet other stroke survivors who understand.’

or

‘I am physically struggling with my toddlers, can anything help me?’

or

‘I’d like to clean my house myself.’ (Not something that remotely bothered Kate Allatt by the way!)

housework

‘I can’t cope with the household bills.’

or

‘How can I take control of my physical recovery? Is there some sort of exercise plan for me I can follow so I can walk again on my own?’

These are just some comments we’ve come across in people pursuit of trying to take control, enablement back in their own lives. Why, for example, do we not have an ‘Amazon-type’ shopping service which allows patients to input their unmet need and it throws up a series of approved companies/products that could help.  Also, why do we not make some of the assistive technology more affordable with more finance and leasing options ?  For example, we buy sofas on higher purchase and most people rent, as opposed to owning, cars now?

We are absolutely delighted to welcome two new hosts to our tweetchat – @Sas_Freeman, stroke survivor, mentor and speaker; and @jo_Howe psychological researcher into chronic stroke rehabilitation at the University of Birmingham.

assistive tech

 

@KateAllatt

Stroke survivor

@FightingStrokes founder/CEO 

Internationally published author – Running Free

12 tips to prevent caregiver burnout!

It’s hard caring for a loved one and can be very rewarding, but it has considerable stress. 


Juggling life as a sole carer, with a job, the kids, perhaps even ailing parents or an illness yourself is very very demanding.  So is it any wonder that family carers are some of the people most prone to burnout?

Perhaps you feel..?

  • You are gaining or losing a lot of weight
  • You are losing interest in activities you used to enjoy
  • Overwhelmed or constantly worried
  • You are abusing alcohol or drugs, including prescription medications
  • Easily irritated or angry
  • Sleepy
  • Tired most of the time
  • Sad
  • You are having frequent headaches, bodily pain or other physical problems.


To help manage your caregiver stress you could;:



  • Accept help. Eg let other people cook for you.
  • Set realistic goals. remember you can’t eat an elephant in one go! It’s all about bite sized chunks!
  • Get connected online or join a traditional support group.  Eg get support from others eg request to join our open Facebook group – fighting strokes or our closed group fighting strokes -the loved ones.
  • Focus on what you are able to provide.  Don’t try to be perfect as you can only try your best.!
  • Seek social support. Go out for coffee or dog walk or eat lunch with a friend or ride a bike, (like my husband)
  • Set personal health goals.  Try to eat healthily, drink water and exercise regularly.
  • See your doctor.
  • Share your expectations with others.
  • Be more assertive.
  • Focus on positive relationships.
  • Share your feelings.
  • Listen to others.

Often you loved-one carers are the reason why most of us #strokesurvivors improve so well. 

You are vital in the #strokerecovery process and must never ever be underestimated.

I hope that helps 😊


NEW EBOOK! 


I Am Still The Same -Self help stroke recovery toolInternationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes Kate’s story in 2 minutes

RT? Don’t talk about me without me. Patient engagement Tweetchat 14th April 16.00

  

So we have a new NHS buzz term ‘patient engagement.Well, The Kings Fund says,

 

‘The role of the patient is no longer as a passive recipient of care. Nowadays doctors are expected to engage patients in their own health, care and treatment. There are also a number of initiatives to encourage patient involvement in the design, planning and delivery of health services.’

 

So let’s see what my own experience was in 2010, albeit before the new hype started, around the phrase ‘patient engagement.’

 

Well, I was very much a passive recipient of life-saving care in ICU, although I was mistakenly conscious. Sporadically, ‘my nice nurses’, would often make me aware of the vast array of medical procedures I had no choice but to endure.

‘Engagement’ was nigh-on none-existent at a time when I was wrongly considered semi-conscious (for two weeks after my stroke), though in reality I was fully conscious the after week from emerging from my medically induced coma!

I put it down to that either I became conscious far sooner than my Glasgow Coma Scale results implied or the results were  interpreted inaccurately.  It is fair to say that many of my nurses – and all my many consultants – were not remotely proficient or confident or willing to use of my rudimentary letter board and life enhancing life line at the time.

I still remember the heart stopping moment (literally) when my body reacted badly (and in rare cases) to the dried blood being cleaned off my new PEG by an over-zealous ICU sister.

I experienced a painful out-of-body-experience, that rendered that ‘said’ sister a quivering, emotional wreck at the foot of my bed.  I remember her being consoled by the other staff, whilst I lay physically paralysed and traumatised in fear and incredibly vulnerable and lonely as my life literally flashed before my eyes.

(My husband, who was visiting at the time, thought the ‘crash team alarm’ was for another patient and assumed his ‘visiting time’ delay was because I’d soiled my ‘nappy’.)

Why also didn’t anyone engage with me as to why my beloved Earl Grey tea was on and then off limits? If they’d said,

‘Kate, if we give you tea and 35 mls goes down the wrong way into your lungs, you will drown, end of.’ 

But no, they used technical medical terminology to a lay person saying,

‘Kate, you can’t have your tea because you will silently aspirate.’

What?

Did you know what ‘silent aspiration’ was before stroke?

I wondered whether my traumatic (and post traumatic stress disorder) could have been reduced if someone had explained to me, or my family, that I was likely to suffer with extremely vivid and distressing hallucinations.

Hallucinations that were like awake-nightmares and which were not real, although convinced me of their reality. I still remember a recurring one, where after my loved-ones left for the evening, a particular nurse – I hated – would slowly start poisoning me with a fatal brown, graphite drip.  You see, I couldn’t do anything so the way I saw it in my blinkered terrified world was that why on earth would I be worth keeping alive?

Now, I know there is no such thing as a graphite drip and the brown fluid, flushed down my cannula, was to treat my severe constipation at the time.

Fast forward to rehabilitation, and my therapists became very goal-centred, well after a few months anyway.  Up until then, they had just been giving me passive or ‘no hope’ therapy.  My later improvements were down to pure unadulterated anger, self-belief and bloody hard work (with the help of my therapists) Proudly, my favourite nurse Oliver recently said, ‘that I actually drove my therapists far harder than they ever drove me!’

I was a former 70 mile a week fell runner after all and as a deeply committed full-on mother to 9, 8 and 6 year olds.  I was suffering from severe separation anxiety that no one bothered to ask about.  I mean let us see, are there really any mothers out there that can imagine not being able to comfort your distraught kids in a crisis (when they’ve seen you lifeless and grey wheeled from home and into an ambulance), or hugging them like it’s the last ever hug before you die or even being able to say, ‘it’ll be alright,’ or just saying ‘I love you?’

My whole recovery was based upon being home as a participatory mother to my kids, end of.  My running obsession, if they bothered to ask me, gave me the work ethic/work rate and the drive to achieve my ambitious goals.

Instead, the medics tried actively dampen or lower my goals constantly. My goals at the time they were to ‘return home as a proper full-on mum’ and to ‘run again’.  Perhaps, they thought I was in denial?  Well, yes, they were damn right, but that didn’t mean I didn’t have real ambitious goals to chase at the same time!

There were times when my opinions could have been canvased and views painstakingly gathered, so I could have been engaged with them about my continence training, or why my bowel movements on the PEG, were so embarrassingly explosive etc.

I couldn’t speak, yes, but I could have been given explanations of my treatment plans and communicated my basic demands. I never knew how and when my physio or swallow exercises would eventually lead to a certain level of independence for me. 

Instead during therapy, I would often be treated to the gossip from the therapists (or nurses) about their exciting though ‘normal’ things they did over the weekend, or hearing who was recently pregnant on the ward or which consultants they despised and why.

I often wondered if my therapists would pick up on my non-verbal clues about my distress over my excessive saliva production – and inadequate saliva management. If they had, then they may have been able to anticipate my anxieties and understand when I hand to gesture withy eyes ‘time-out’ from my precious rehab session?

So I wonder, was there insufficient GP, therapist and consultant training on them being able to assess patients real views, values, capacity or their willingness to share?

Indeed , do the length of consultations prevent proper patient engagement?

Does the referral system in the UK reduce a patients’ treatment options and discussions?  Are there enough administrative monitoring systems in the NHS for thorough patient engagement in practice? What, if any, are the barriers preventing therapists engaging properly with patients? Furthermore, how well do we evaluate improved (or not) patient outcomes after a patient engagement process?

I’m interested in your answers therefore, our next Tweetchat questions on 14th April at 16.00 will be on:

T1. Do you think stroke patients, or their carers, want to be engaged in managing their own health?

 

T2. What may discourage patients or their carers, being engaged?

 

T3. What skills or resources do patients or their carers need to have to be engaged in their health? Are those resources accessible?

 

T4. What barriers prevent therapists engaging with patients?

 

T5. How do we evaluate how well outcomes improve after engagement?

 

 

I do feel very strongly that proper patient engagement can and should, improve patient outcomes, but I do fear this new NHS buzz term will be nothing more than a feel good exercise.

P.S I did return to my kids and I did run  again! 

  

 

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

Kate’s story in 2 minutes




When stroke recovery doesn’t happen.

I’ve long been associated with the notion that stroke recovery is always possible, whether those improvements are small or large positive changes.

However, I have to admit that since meeting Kati Van De Hoeven in beautiful Finland last weekend, I’ve met someone who sadly hasn’t made very much physical improvement in twenty years, after her brainstem stroke and locked in syndrome diagnosis. Whilst she eats, writes books and blogs, plans meals, enjoys retail therapy – if it involves boots and bags – moves her head and eyes very effectively, but she is unable to do much else.

11010300_10205098791142885_5156708741920875792_n

1723789_10205098793782951_530707933591279859_n

Kati is now forty years old and yes, she suffered her illness at the shockingly young age of nineteen and a half, in her prime and as a successful model living in LA. It would be fair to say that she looked like a brunette version of Cindy Crawford! 



Her phenomenal blog can be read here. Kati has been my second heroine (my first being Ms Christine Waddell) since I came across her blog on Facebook early last year.  Her unique approach to life inspires me and quite frankly stops me immediately if I ever start to go down a self-pitying track about everything I’ve personally lost since 18.09 on 7th February 2010.  You really are either a glass half full or half empty kind of person and I’m definitely, and mostly, the former!

As I approached her wheelchair, I was stunned by her natural beauty, impeccable dress sense, sublime makeup, beautifully coiffed blond hair and not to mention her fabulous knee-length, tanned, suede boots! (A girl after my own heart in far more ways than one!)  I quickly realised that Kati shares not only my annoying emotional lability, but a smutty sense of humour, obsessive traits, scary determination, stubbornness and sense of informality. Yeah, I was the ugly sister who was perhaps separated at birth!

11046422_10153719632156029_4596887875322855964_n

Her husband Henning, yes husband, who she met only 4 years ago cleverly and tenderly stands by to interpreted her eye movements, on what was an invisible e-tran board. You see, they have honed their communication system between them so well, that Henning doesn’t even need to use the physical transparent communication tool at all now.  Now that’s impressive! Kati shows in no uncertain terms that a long term Locked In Syndrome diagnosis does not necessarily equal a poor quality of life or none existent emotional well being.

11066561_10205116728351304_3313883478349284333_n

I was there with a documentary film crew to ask her questions about her former, exciting life, her illness twenty years ago, how her and her parents each coped and perhaps learned to accept and let-go of their anger, her  relationships with friends, how she met her loving husband, her Christmassy wedding day, what her hopes for the future are and of course what the unique Finnish word – SISU – means to her.

10953165_10205107748366810_7161666490845880978_n

If you are not familiar with the word SISU, all I can say is that Kati epitomises it perfectly!

According to Wikipedia SISU is:

‘Sisu is a Finnish word generally meaning stoic determination, bravery, resilience,[1][2] perseverance and hardiness,[3][4] expressing the historic self-identified Finnish national character. Sisu is about taking action against the odds and displaying courage and resoluteness in the face of adversity. Deciding on a course of action and then sticking to that decision against repeated failures is Sisu. It is similar to equanimity, with the addition of a grim quality of stress management. The pertaining adjective is sisukas, “having the quality of Sisu“‘.

Kati is all these things and far more. She and Henning are quite simply incredible human-beings who deliberately choose a life of altruism and optimism because frankly, it feels better. That doesn’t mean they don’t have tough times now, because sadly there is seemingly no end to shit times for some unlucky people.

During our visit, I couldn’t get out of my mind, something that I found so incredibly moving, when I spoke to Kati’s dutiful and loving mum. She said,

‘Now, I can die.’

She said this after observing her daughter so happily married with her son-in-law, Henning, something, I’m sure, she could never have imagined, years earlier.  As a mother myself (and it was Mothers Day yesterday), I  found this thought deeply distressing.

You are probably thinking what they do together?  Well, they sum up true, basic happiness which I found both incredibly moving and humbling.

A happiness where you don’t need expensive objects, tablets or phones or ambitious aspirations, flamboyant holidays and houses, or that perfect job, just simple, old fashioned unconditional love.

They share a marital bed, they write their books and popular blogs during the bleak winter months, they share the joy of having their dog ‘Happy’, they listen to the radio, take romantic walks as Henning pushes her wheelchair during the milder spring and summer months, they take short breaks (they are shortly off to Latvia), they listen to Caribbean music and Henning often prepares and cooks Kati’s countless recipes! (She loves cooking.)

11066516_10153719648471029_846007948013021522_n

Our Finnish hosts were amazingly kind and generous and our young filmmakers certainly enjoyed their generous, home-cooked meal and dessert! Not something they are used to as recent Graduates!

As we prepared to leave their relaxing, welcoming home to take the two hour journey back to our hotel, I couldn’t help thinking that sadly beautiful Kati hadn’t made very much physical stroke progress in twenty years. Although I do wonder whether she would have made more physical progress in 2015 as opposed to 1995? Especially with advances in stroke rehabilitation therapy, research and treatment plans?

However, what is true is that her stroke recovery has not just been about her trying to overcome her enormous and catastrophic physical difficulties, but her only-to-be-expected psychological and emotional issues that followed.

We must never lose sight of the emotional (and cognitive) difficulties relating to stroke – from the apathy, the depression, the isolation, the post traumatic stress disorder, the withdrawal, the low-confidence and low self-esteem, etc.

Kati has journeyed through her loss cycle – from the denial, to anger, to depression and to acceptance – and unbelievably found her current happy, truly inspirational state just 3 years after her life changed beyond belief.  It would be some considerable years after that, when she would meet her soul mate, best friend and true love of her life, Henning.

As far as I’m concerned, that is actually an incredible stroke recovery!

We are looking for distributors for our ‘Locked-In Forever?’ documentary if you are interested, please email me.

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

Kate’s story in 2 minutes

Clinical patient dignity does not equal real patient dignity

Clinical patient dignity is not equal to real patient dignity, trust me!

 

We talk about patient dignity and compassion all the time but aren’t they simply fashionable new buzz words?

 

In the back of my mind I’m thinking that the phrase ‘patient or person-centred’ feels like a term we often use but don’t actually fully embrace.

 

Being patient-centred is‘where the rules and procedures of the health care fit the person, rather than making the person fit the rules and procedures of the health service’ according to The Royal College of Nursing.

 

We also talk about treating ‘the whole patient’. The phrase sounds nice doesn’t it? So does that mean we treat the whole patient by understanding that patients’ former life, interests, motivations, family AND FRIEND dynamics, before they got ill? If it is then great but this was often not the case with me or other patients..

 

Wouldn’t this help improve patient outcomes, facilitate patients’ earlier discharge home and reduce overall treatment costs?

 

Most patients I engage with via social media through the charity I founded – Fighting Strokes – think these are simply convenient, empty words or slogans.

 

I will always be forever grateful for the knowledge, professionalism, diligence and timeliness of my own brainstem stroke with locked-in treatment action plan.  This started on 7th February 2010 almost immediately after I collapsed at home and continued in the ambulance, ICU and then on in rehab.  I completely understand that the NHS is being squeezed from every angle and at a time when patient treatment expectations are also going through the roof!

 

Without the immediate treatment response I received to my illness, I wouldn’t have been able to return home to be a mother to my three, dependent children and a wife to my husband.

 

But I also wouldn’t have become the VOICE that I am for other stroke survivors globally either.  I like to think I’m a true patient advocate.

 

Stroke recovery, acute locked in syndrome improvement and raising awareness of the physical and emotional post-stroke issues, once ‘the bomb has exploded’,  is my calling, it’s simply not a choice for me.  I received amazing life-saving treatment and I have a second chance of life which I have grabbed with both hands, for as long as I am around!

 

So when we talk of compassion and patient dignity I have one simple rule to help the caring/life-saving profession – TREAT PEOPLE LIKE YOU WOULD WANT TO BE TREATED. Simple!

For example, when a paralysed woman (who is heavily menstruating) is the wrapped up in the standard issue-white-NHS towel after a shower, I suggest that every effort should be made to preserve her dignity and quickly dress her and replace a new incontinence pad. Trust me, it would have helped me manage my anxiety levels enormously.

 

Similarly, don’t ALWAYS send a student nurse to attend a locked-in patient when the patient needs their soiled ‘nappy’ changing as it generally takes four times longer to do, (and with considerably more wipes.) Just because the patient can’t complain, more often than not a qualified nurse should do this task.

 

Finally, when doctors or nurses say they will do something for a patient, but then don’t/can’t, explain this to the individual immediately. Try not to leave the patient waiting.

They will usually respect your honesty and understand that you have had an unforeseen event to attend to ahead of their promised treatment procedure. The patient is also likely to trust you more.

 

It’s not rocket science!

As I stress, please TREAT PEOPLE LIKE YOU WOULD WANT TO BE TREATED (or how you would treat your Gran!)

 

 

 

By @KateAllatt 

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

Stroke recovery documentary – wanna help crowd fund it?

We are looking to supplement the grant we’ve been awarded with crowdfunding, if you fancy getting involved?

Get involved why not help Crowd Fund the Georgia’s documentary film?

This is not just a documentary film about the world hearing the other side of the ‘LockedIn Unlocked’ stroke recovery story.

My story will join other remarkable stories where individuals haven’t ended up like the poor chap in the award winning film – The Diving Bell & Butterfly. Yes, sadly some individuals pretty much remain in a desperate state similar to his, but others simply don’t. My charity offers ‘no promises, just possibilities’

Indeed, this will hopefully raise awareness of some of the myths surrounding potential to improve after having suffered a brainstem stroke with or without locked in syndrome.

Quite a lot of people recover significantly and far more than the often very premature health professionals would formally suggest especially in the early stages of the illness.

I hope we kick ass with awareness, attitudes & treatment, but also explore the ways we can optimise the well-being of those who don’t enjoy significant improvement gains.

I hope Georgia’s film will give people, like I once was, an important VOICE!

IMG_2757.JPG

Have you been to ‘Hell’s gates?’ #InvictusGames #strokesurvivor

Watching the truly remarkable Invictus Games Prince Harry has so brilliantly pioneered, made me think, ‘bloody hell those ex-servicemen and women have also been to Hell’s gates and back, big time.’

Everyone has tough times but when you hear of the physical and emotional traumas these people have suffered, you can only imagine (in your worst nightmare), if we really understand what a tough life really is? Should we put ourselves more out for others?

Do we moan unnecessarily in life? Should we be more grateful for what we have each day?

This is ABSOLUTELY not to say people can’t OR shouldn’t suffer mental illness for lesser experiences at all, as we all have different coping thresholds, but we must celebrate the inspirational way these people choose to cope with their massive set-backs.

In fact to prove that, I am now so passionate about mental health that I took part in my own Mrs Doubtfire challenge recently.

IMG_2739.PNG

I can’t imagine the fear, the loss, the physical pain, the post traumatic stress, the loneliness, the isolation, the grief, the loss of all the dreams you once had, the pain of rehabilitation, the redefining yourself, the loss of friends, etc.

Writing this list I realise that these feelings are quite normal for stroke survivors to have too. We really need to do more to help everyone deal with their setbacks and learn lessons from these inspirational athletes.

When I hear how a man only narrowly escaped being zipped up dead in a body-bag in Afghanistan after one final pulse check from a diligent doctor, or I hear of the only ever man to survive being shot through both sides of his brain, it makes me feel grateful and blessed to be alive.

I salute you Prince Harry and your organising team! Very, very well done! Long may the games continue!

Will power, self-belief and having an ‘I Can’ attitude, will help all us wounded individuals.

.

IMG_2741.JPG