betert jet pack

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.


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’


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


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


‘My catheter is so fiddly to fit’


‘What would help me improve my speaking voice?’


‘My bathroom looks like a hospital WC!’


‘I struggle to open my medicine packets.’


‘I feel so invisible in my wheelchair.’


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


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


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


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


‘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



Stroke survivor

@FightingStrokes founder/CEO 

Internationally published author – Running Free


#Aphasia Tweetchat – what you said! #strokerecovery

After a rather shaky start, what some confusion over British Summer Time (some didn’t realise our clocks have already sprung forward!) we were finally able to have the aphasia tweetchat at 9pm UK time in the end. (We’re really sorry if you missed the group chat and wanted to participate!) I’m also sorry that aphasia sufferers themselves would find getting involved with a tweetchat on aphasia somewhat difficult.  I guess I had family, loved-ones, clinicians, companies, academics and researchers more in mind when devising this tweetchat to learn and contribute to our knowledge pot to better help patients. However, if we offended or prevented patients from contributing directly on this occasion, we sincerely apologise.

There are a few themes that came out from yesterdays chat which I’ve tried to summarise here but feel free to scan the transcript and analytics!

It is estimated by @TactusTherapy that there are around £2 million people with aphasia in the USA and The Stroke Association says there are around 367,000 sufferers in the UK.

Aphasia can last one day, one week or where there is a spontaneous recovery or it can be a chronic long term illness.

Aphasic people can use props, draw words or pictures on paper when trying to communicate, get people to speak slowly or stay calm when they are talking.  Additionally they can carry a card to let strangers know that you have aphasia and what aphasia means.



1. It appears there is considerable confusion over the medical labels to do with speech and communication issues eg, apraxia versus aphasia.

2.  Community support for aphasia sufferers and their loved-ones is very lacking.

3.  Evidence-based research into effective aphasia interventions is also lacking due to available funding streams and support priorities.  Maybe, we need to be better at demonstrating improvement after certain aphasia interventions? Perhaps, we can learn from the work from the Aphasia Centre Ottawa?

4.  Dr Steve Green provided some very practical tips for managing aphasia.

5.  We all agreed that we needed more relevant and engaging stroke messages on aphasia and #strokerecovery generally.

6.  We have to find better long term advocacy, traditional support with more immediate and accessible online support, especially with the overstretched resources.

7.  We must explore more digital interventions in the form of new Apps like the range supplied by Lingraphica that allow for better intensive therapy.

8.  Treatments for aphasia include: Constraint Induced Therapy, The therapy technique – Promoting Aphasic Communication Effectiveness, Telemedicine or Telehealth, new and improved Apps and structural and neuroimaging processes which provides knowledge into the neural process.  Above all to promote aphasia treatments  that are –  restorative, strengthening, compensating, facilitating and educational.

9.  Tactus Therapy seem to be a good resource to check out!

We had a very enjoyable and productive tweetchat. Thank you. The next one is to be hosted by @StrokeTattler on the subject of ‘assistive technology to help people with their long term daily living needs’.  Don’t forget our clocks have gone an hour forward!




Stroke survivor

@FightingStrokes founder/CEO 

Internationally published author – Running Free







Next tweetchat on #aphasia recovery as part of our #strokerecovery series at 8pm BST 12th May!!! #hcsmca

(Time zone converter).

Aphasia refers to difficulties in the ability to understand or express oneself through speech.

Language allows us to express our thoughts, desires, intentions, motivations, to ask questions, to give commands, to understand what people say, to read, to write, to listen & to speak.

When aphasia strikes a persons ability to use ordinary language is often difficult, and someone may not be able to communicate their daily activities or may feel isolated or may not be able to interact socially.

Some aphasic people may have receptive aphasia ie comprehension problems such as not knowing people are speaking to them, or realising if someone is angry or merely asking a question or understanding complete thoughts and individual words.

Other people have expressive aphasia where some people have difficulty forming complete sentences or leave simple words like ‘the’ or ‘is’ out or often say things that don’t resemble a sentence.

Famously, the critically acclaimed film, The Possibilities are Endless about singer  Edwyn Collins‘ recovery from a stroke, which resulted in aphasia – a communication disability which not many people know about. The website for their campaign is here:

The film producers are reaching out with a series of FREE art therapy workshops, with the first one being this Saturday 18th April at Hampstead Heath’s ‘Hive’ venue.  

So, for some even less famous than Edwyn, this is a huge residual difficulty following a stroke and explains why it will be our next #strokerecovery tweetchat at 8pm BST on 12th May 2015.

Our questions will be:

T1.What percentage of stroke patients have understanding & expression issues? Is it more common with bleed or blockage? Why?

T2. What are the evidence-based treatments for aphasia recovery?  How long is aphasia recovery typically? 

T3. What evidence-based treatments are available for expressive or receptive aphasia?

T4. Do patients get sufficient community support and therapy once they leave hospital. If not, why?

T5. What are the future developments or technology in aphasia recovery?

I hope to see you soon!! Don’t forget May is official stroke month!




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



Really emotional after #stroke? 8 tips for #strokerecovery


So you are banned from seeing your daughter act in a serious drama performance at school in case you laugh loudly or cry, when actually pre-stroke you would have simply just smiled or looked sad. 


Or you laugh at funerals or have extreme emotional reactions in the cinema. (Which are also incredibly embarrassing for your kids) and not least deeply distressing and frustrating for you. 

Apparantly, I have an odd gurning-type-expression when I try to hold back the floods of tears at, for example, the French singing/talking dog on Britain’s Got Talent recently. 


Sound familiar after #stroke? 

Changes in your emotions or behaviour can be caused by the physical damage to your brain or from the effects of coping with the trauma and its aftermath. 

These tips may help you deal with the emotional aspects of your #strokerecovery:

• Don’t feel guilty!  It’s not your fault.

• Talk to someone. I personally find making light of the situation helps me to cope with my friends and family so they understand.

• Get support! This may be online or in traditional support groups.

• Know when to ask for help. 

• Exercise. I walk my fabulous cocker poo and go the the gym every day, like an extension to the routine of brushing your teeth.

• Find time to relax. I’m addicted to Spotify, the Podcasts app and Netflix – House of Cards, Breaking Bad, Damages…. 

• Give yourself credit.  I know I have very high standards but reflect on all your achievements since your life changed after your stroke. Mistakes are normal and perfectly ok, you generally learn from them. 

• Tell people how you’d like them to treat you if you become emotional.The more people tell me to stop laughing or crying in appropriately I get worse! I think, after months of explaining to my family, they finally get that and back off from me. 

Perhaps this us useful?


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


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 😊


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.’


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! 




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


‘Would you like a cheese sandwich?’ #strokerecovery

Now be honest, are you so busy with juggling the balls of your own life – work, kids, partner, home, family etc – to be able or willing to care about for the needy and vulnerable people on our society?


Truthfully, this was perhaps a bit more like me pre-2010 – although I did a few charitable fundraising challenges and donated my skills to a local charity, before my own D-Day!


It may be the case that you care but struggle cope with others vulnerabilities, fragilities or mental health issues, so you steer a course away from the ‘said’ damaged individual?


Perhaps, you are selfish narcissist and are solely focussed in pursuing your own personal fortune and agenda? Sadly, there are quite a lot of people like that in the world.


Maybe, a your friend or relative who actually kindly visits you, but then is only able to offer patronising ‘sympathy’ or asks, ‘would you like a cheese sandwich?’


If you are lucky, a friend or relative will offer true ’empathy’. You know when a caring friend says, ‘I have absolutely no idea how you must be feeling right now, but I’m here to listen and support you, if YOU want.’



But better still, is where someone offers you ‘altruism’.

So what is altruism you ask?


Well it was put perfectly by Matthieu Ricard in a recent TED talk. He said,

‘The wish for others to be happy and to help them find the cause of their happiness.’

 Helping others find a way to cope positively benefits not only the ‘recipient’ but will make the ‘giver’ equally as happy.


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