Tuesday, 27 June 2017

Emergency Information (EmergencyID on iPhone)

At least once a week my wife and I meet with health specialist for our son.  Without even thinking we can reel off a list of his symptoms, conditions and complex medication.  He has a very rare genetic condition (GRIN2A) which causes every nerve in his body and brain to pass on messages incorrectly.  

As my son's condition is so unique his medication and treatment is very unconventional.  When we call ambulances we explain all of this, but what if something happened and I wasn't able to explain?  What if I was involved in an accident while caring for my son?  Who would tell the emergency services about my son?  How would they know how to look after him?

Firstly we worked with our NHS palative care specialists to create a PAC (Pediatric Advanced Care) Plan, which details his conditions, medications, treatment plans as well as recommended emergency approaches.  A copy of this plan is available to ambulance drivers and a copy goes with him everywhere he goes : 
Pediatric Advanced Care Plan 

I then setup an EmergencyID on my iPhone.  It's a little known feature, which allows the emergency services can see key medical information and can call your emergency contact without unlocking the phone.  It looks like this :

Lock screen - Emergency option bottom left  

lock screen - medical id option bottom left 
medical id screen 

From here you can see the most important information,  a pointer to my son's PAC plan and a button to phone my wife with a simple click.

Awesome isn't it?  This is how you can set it up :

1 - Open the Health app
iPhone health app icon  

2 - Select MedicalID from bottom right:
health app home page - medical id bottom right 

3 - Select 'Show When Locked' and complete the relevant fields
medical id edit screen 

4 - That's it, you're done!

Saturday, 11 February 2017

Everyone can Mario Run

The Williams family is a Nintendo obsessed family.  Between us we've owned a Gameboy, SNES, Gameboy Advance, Nintendo 64, GameCube, Wii, Wii U, DS, 3DS, NES Mini and we have a Switch on preorder!  The male part of our family is made up of a geek dad and 2 geek boys aged 9 and 5.  They've watched all of complete back catalogue of Mario cartoons on Netflix, have a huge Amiibo collection and had lots of cool soft toys for Christmas. Unfortunately one of them has never ever actually played a Mario game; this is because my youngest has a severe disability that restricts his physical movement and control.  That is until today!  Today we played Super Mario Run: the first disability accessible Mario game.

Apple have included a lot of great accessible features into the iPhone and iPad iOS, which allows users to interact with a huge range of external devices.  The feature we used today was Switch Control.  We used it to connect a big button (known as a Switch) to Macsen's iPad to simulate a screen press.  There are a huge range of switches available including foot peddle, head switch (like Stephen Hawking uses), a hand grip switch, finger movement switch, a joystick and lots of others (here's a very Large selection: http://www.inclusive.co.uk/hardware/switches-and-switch-mountings).  We currently use a big easy press button yellow button with the excellent APPlicator connector from Pretorian http://www.inclusive.co.uk/switch4apps-p5978


Here's a video of Macsen's first game of Mario:

If you would like to have a similar setup, here's a how to guide :

How to

1 - Connect the switch

Connect your switch to your switch connector, turn on Bluetooth and connect to the connector.  We use this switch and connector:
- Connector (APPlicator by Pretorian): http://www.inclusive.co.uk/switch4apps-p5978

2 - Register the Switch

In settings navigate to General > Accessibility > Switch Control

Tap switches and choose Add a new switch:

We have an external switch, so we choose External (if you are bored later, you should try Camera.  It means you can control the game by tilting you head; it's very cool!) 

You are then prompted to activate the switch.  This basically means Push your button.

You wil be prompted for a button name.  I called mine Yellow port 4 (as it's a yellow switch in port 4 :) )

Every switch must have a default action assigned.  Choose Tap.

3 - Assign the switch with a screen press

At this point the iPad is aware of the switch, but doesn't know what we want it to do with it.  We need to define a 'recipe' to tell the iPad to press the screen when the Switch is pressed.

Back at the Accessibility settings page choose Recipes and then new:

Given the recipe a name and choose Assign a switch:

You should see the switch we registered earlier, select it:

When asked for an action choose Hold at Point.  This will tap a specific point on the screen and also allow you to perform long presses for bigger jumps, just the same as using the touch screen:

When you are asked to choose the point on the screen make sure you rotate the iPad to portrait orientation as this is the way you play Super Mario Run.

The best position I've found is Close to the bottom and in the centre, this works for jumping and choosing Retry of a Continue throughout the game:

The next step is very important, make sure you set the Lunch recipe to be the one you just created.  If you don't do this it won't be activated.

4 - Turn on Switch Control

The final step is to turn on Switch Control:

This is the same place to turn off switch control once you've finished the game.

If anything goes wrong with the setup just come back here and turn the switch control off and on again.  I've had problems when the screen locked, but this fixed it instantly,

5 - Play the game!

You'll need someone to navigate the menus and options who is able to use the touch screen, but once you're in the main gameplay you can use your button to jump, spin and smash goombas!

Saturday, 6 August 2016

Virtual Reality for £3?

Oculus Rift from Google and Sony's Virtual Reality addon to PlayStation are both rumoured to be around £350 when available, so when my 8 year old came home with a £3 cardboard virtual reality goggles from Flying Tiger I wasn't expecting much. 

How wrong was I?  This thing is amazing!  Little did I know that there are already lots of free apps in the Apple App Store that work with it, just search for Virtual Reality!

It's based on Google Cardboard (https://store.google.com/product/google_cardboard) so there's lots of content from Google and others who have used their template.

When you're in a compatible app you need to tap this button to activate cardboard VR:

The image will split in two (1 picture for each eye).  For best results, you should hit the cog button and scan this QR code:

Then put your phone in this box:

And hold it up your eyes or use the elastic band (well it is £3) to secure it to your head:

Now wherever you look the image follows you!

Here's a sample from Google where you in a boat in a digital 3D ocean:

Where there's even a huge leaping, splashing whale:

What's most impressive feature of our £3 googles is the built in button which allows you to interact with the virtual world!

Already we've been looking around using Google Street View, played a load of games and looked around Rio to get a feel of the Olympic atmosphere.

All in all a bargain at £3!

Saturday, 9 July 2016

Symptoms - Finding the Pattern

This is my amazing little boy Macsen:

Well to be honest he's not that little any more, he's 5 on Monday and now weighs 18kg!  Unfortunately he's not always as smiley as you see him in our blogs and social media accounts.  As well as having disabilities which include Cererbral Palsy Macsen has a lot of medical problems.  These problems are very complex to deal with, impact each other and all are worsened by the huge mixture of medications, which are constantly being changed as we try and keep up with his evolving conditions.

Over the last 5 years I've tried to keep track of lots of metrics about what's happening in the hope I can find a pattern.  I've tracked how many seizures, the intensity, what regular medication given, how much rescue seizure medication, and even how many poos per hour!  I've been tracking plotting and looking for patterns constantly using scraps of paper, industry templates, my own paper forms and lots of spreadsheets.  I'm not sure I've ever got it right and every time I change format I lose a load of data, patterns and maybe the answer!  I recently found out about an awesome website which Feels like exactly what I've been searching for!

Bobath Wales invited me to a training session last week run by Dr Nicky Harris.  Nicky (it always seems weird referring to a Dr without the Dr) has specialised in Palliative Care for many years and it seems our family is not unique with this problem as she spotted this need and with her team they created a tool called http://my-quality.net!

http://my-quality.net is a secure service run from a UK datacentre funded by the NHS and other groups.  It allows children (where they are able) and their families to log how their symptoms are evolving and share the findings with their consultants!  Right, that's enough preamble, let's get on to showing you what it's all about.

Setting up YOUR Priorities

The first thing you do once you've registered is to setup your priorities.  The system has a load of out of the box things ranging from pain to seizures to toilet patterns (sorry, I keep going back to that!).  The thing I love is how you can configure them to suit your own situation.  Here's one we setup for the intensity of Macsen's seizures:    

The most important thing is the landmarks at the bottom.  This is where you define on a scale from 0 to 10 what is good to bad.  You can imagine how this would be very different for someone who regularly has seizures that could last 30 minutes or someone who needs to categorise between absences and tonic clonic seizures.

Checking in daily

Once you've setup your Priorities (these can change and evolve over time), you then simply login daily and move a few sliders to log symptoms have been like that day.

The beauty of this is it's simplicity.  As you move the slider from left to right the smiley face turns sadder and more distressed; also the text below changes inline with what you defined in your Priorities.  It's this text that ensures consistency and that a 6 in January 2016 is the same as a 6 in June 2018.

Looking for Patterns

The real strength of this product is when you enter the charts section.  You can view a graph grouped by day, week or month, summarised by agrigating or averaging the numbers.  You can choose graph types and also choose which Priorities you want to display.  Here's one grouped by week highlighting Macsen's seizure patterns:

Over the next few days I'll be digging to find out what happened on the week of 15/04/2016 and 06/05/2016 to leading to the positive improvements...

Looking for Patterns Together

The important thing to remember is that this tool allows you to securely share this information with the specialists involved in your child's care.  I've already linked up with one of our consultants and one of our nurses, but I've invited all of our key specialists.  I hope together we will find the right pattern, get Macsen's symptoms under control so we can focus on fun rather than appointments.

Tuesday, 29 March 2016

I'm Bored!

See Being in hospital is soooooo boring.  At least there's a TV to distract you though?  Well unless you are unable to sit up or worse still you are stuck lying on your back.

Macsen has this problem and unfortunately he's in hoslital quite a bit...  It took a while but we found the perfect piece of tech to entertain Macsen.  We found a pocket projector that we connect to his iPad to project into the wall: 

Or ceiling if there isn't a wall to use:

For less than £250 we for a projector, iPad connector and a clamp.  Now all the other kids are jealous of Macsen as they share their 15" TV while he has a 60" screen on the ceiling!  

Clamp: http://m.ebay.co.uk/itm/161979573056 

Sunday, 8 November 2015

Bobath - More than just eyegaze

It's been almost a year since our family had the pleasure of being part of children in need 2014.  Macsen's story was one of the 3 minute tearjerking videos that encourages you to donate.  If you haven't had a chance to see it or you need a good cry take a look :

When we were asked to take part we instantly said yes, not just because it's Children in Need, but because we wanted to represent Bobath Wales and let the world know what amazing things they do everyday!

Bobath Wales (officially Bobath Children's Therapy Centre Wales) is a charitable organisation that helps children with Cerebral Palsy.  The team is a collection of consultant level Physiotherapists, Occupational Therapists and Speech and Language Therapists.  Every single specialist who has worked with Macsen is exceptionally knowledgeable, passionate and generally lovely.  Actually that goes for the whole team, after our first visit every singe therapist, marketing person and member of the office knew Macsen and every member of our family by name.

I would describe Bobath Wales as a problem solving service.  They get to know the child and family and plan a programme and build a team around the child's needs at that time.  For us this has been mainly therapy blocks of ~ 10 sessions over 4 weeks.  We've had blocks focusing on feeding, breathing, body shape, hip spasms, pain and as you've seen communication and eyegaze.  Here are some examples of how the team have helped us :


This video shows how Macsen's breathing was before we visited Bobath.  We had previously met many consultant doctors including an ENT surgeon who performed keyhole investigations.  We were told that nothing could be done to help and we just have to wait and hope it improve improves...

During the first day of our first visit to Bobath Wales they identified that Macsen was not using his diaphragm correctly.  They showed us how to support him to encourage him to engage his diaphragm.  We did this for 20 minutes 3 times a day and within 3 days his breathing changed, his ribcage pulled in and his whole body shape changed!


Also during our first block we learned how to safely feed Macsen orally.  He had recently started NG feeding, but during the block we were able to prove his swallow was safe and move away from tube feeding.  We were introduced to a special toothpaste that doesn't produce foam.  This was revolutionary for Macsen as he struggles to cope with increased saliva and during tooth brushing he was at serious risk of lung aspiration.

Strength / tone / body shape

Physiotherapy is at the centre of everything that Bobath has done for Macsen.  He is very complex due to his stiff limbs and floppy torso.  Every time a Bobath therapist handles Macsen we are amazed what they can achieve.  With their support he has strengthened his neck, loosened his limbs and has improved his ability and confidence in holding his head.

Throughout the last 12 months Macsen has had awful problems with pain.  The pain was so bad that it was hard to straighten him and he just wanted to be rolled in a ball.  This left him with a curved back, S shaped spine and shortened leg muscles (unable to straighten).  The team have done an amazing job in starting to reverse this and have trained us in how to keep going.  We hope this will minimise or negate the need for operations in the coming years.

Pain and Spasms 

During two of Macsen's blocks we were unable to work on the developmental areas we had hoped due to his increasing pain and muscle spasms.  The team identified this and worked on identifying the root cause of the pain and teaching us how to reduce the impact.

Advice / Training and contacts
The one thing that has always amazed me is the openness of the whole team to learn.  Although every therapist has a specialism they have all developed the highest level of skill in each other's discipline.  They also welcome specialists from other organisations and other Bobath centres; we have been part of such training sessions and every single person, no matter what rank or level of experience is open to someone else's perspective and experience.

The team also ensure they have keep contact with each child's local NHS team.  They produce very detailed programmes to ensure that the child has continuity of care and that the benefit continues well beyond the block.

We also experienced the benefit of their extensive specialist network when Macsen had a very unique digestive problem.  We were making slow progress, he was experiencing alot of pain and we were constantly being told there was noone who could help us privately.  Within a day of asking Bobath for support they reached out to their network and a number of specialists recommended a consultant in London who was able to identify, advise and operate on the problem within weeks.


We have also had lots of emotions support from Bobath's Family Support Worker who is a CP mum herself!  We've also been to lots of fun and useful events including ice-skating, meeting assembly ministers and meeting Santa.

It's hard to believe that Bobath has helped our family in so many ways in Macsen's short lifetime.  Every child that has cerebral palsy is so very different and Bobath Wales adapts to support their specific needs.  Hopefully you can see from Macsen's story and Bobath is very much more than just eyegaze! 

Please make a difference to families like ours and make a small donation to Bobath Wales :

Monday, 3 August 2015

Making the iPad Bashable

iPads have become must have equipment for every school class, every physiotherapist and disabled child at home.  It's also amazing to see how many apps are on the app store designes specifically for our kids!  What's really cool is seeing how standard (and cheap) apps can be enjoyed by our kids.  Have you ever played with a standard app and thought: "this would be perfect for my child" but when you try it out you have problems?  They hit adverts by accident, open settings menus, 3 finger swipe into your emails or keep hitting the home button?  Hopefully I can help.  There's a hidden but very powerful feature on the iPad called 'Guided Access' which is exactly what you need.

I'm going to walk you through how to setup guided access for the amazing garage band app from Apple (link).  Here's our favourate instrument: the electrical guitar:

With this instrument you can play 48 different key sounds by moving your fingers across the screen.  You can make a really cool tune very easily.  The only problem is the top half of the screen is full of menu options!  So let's get on with turning those off.

Enabling Guided Access 

The first thing we need to do is to enable 'Guided Access'.  This can be found in the General/Accessibility section of the settings:

To enable 'Guided Access' you need to switch on the top and bottom options (if you don't have a passcode on your iPad then it may prompt you to set one up).

Using Guided Access 

Turning on Guided Access is really easy.  You just hit the home button 3 times really quickly (in an app, not the home menu).  This will turn on 'Guided Access' with the default settings:

- sleep button disabled 
- home button disabled 
- multitouch features disabled

Already it's solved half our problems, but there's more!  Hit the home button again 3 times and you will see the 'Guided Access' advanced options:

From within here you can decide if you want the Home button, volume buttons and switches (classified as keyboard) to work while 'Guided Access' is turned on.  You could also turn off touch if you want to show a video without screen touches interfering.  The final feature is my favourate.  

You can setup block zones for areas that should not be clicked.  These can be adverts or in my example the settings on the top half of the screen.  To do this you draw either a box or circle around the area you want to block and then resize the shaded box to cover the area.  

When you're done click Resume in the top right hand corner.

Now you're free to bash the screen as much as you like!

Ending Guided Access

To turn off 'Guided Access' and get back to your normal iPad simply click the home button 3 times and chose End.

Here's a quick video is my boy enjoying playing the guitar thanks to 'Guided Access':

Drop Proof

I'd also recommend making your iPad drop Proof.  These are the covers we use which are both brilliant!