Trabasack-Mini

Mini and Mini Connect Trabasack Review

As promised, here is my review of the Trabasack Mini and the Trabasack Mini Connect products. These two have been sent free for me to review. As a long time user of Trabasack Products, I will give my honest opinions of these products.

How are these products different to the Trabasack Curve?

In my Trabasack Curve review, I focused on the differences between the wipe clean, leather-look version of the Curve and briefly explained why I chose the non-Connect, velcro version. The main difference between the Mini and the Curve products is shape and size. Whether you choose the Connect version of either product or not the Mini is square and slightly smaller than the Curve.

The beanbag inside both Mini Models of the Trabasack is also square and unlike the Curve, it is a tight squeeze to fit more than one beanbag inside a Trabasack Mini. Having said that I haven’t noticed any instability that has made me think of adding an extra beanbag. It is only because I owned the Curve first that the option occurred to me. The smaller size means that the bag fits nicely on my lap and the beanbag covers more space. This makes both Mini products very sturdy and comfortable to use.

Trabasack Mini Beanbag

What’s included?

Both Mini versions come with an instruction booklet, two straps, one short, one long. Both have six D-rings each and both come with two ring pull zips. The only difference between them is the tray surface.

Benefits of Mini Connect velcro

The main benefit of the Mini Connect version is that velcro sticks to it. This means that objects stay secure on the tray. Having items stay put can be useful for anybody but particularly for disabled people. The mini Connect can help ensure that items stay within easy reach.

TV Remote held by MediaMount

Trabasack MediaMount

If you are able to view the image above you will see that my TV remote has something wrapped around it. This long accessory, sold by Trabasack is called a MediaMount. The MediaMount is basically a long strip of soft material with velcro all along the underside with two loops at the end to assist people with limited dexterity to grip it. The design means that it sticks to itself and to the Mini connect. This means it can hold items securely and at virtually any angle you want.

Mini Connect Cup held with MediaMount

Mini Connect and iPad

In my previous review of the Trabasack Curve, I mentioned how I had damaged an iPad case by putting too much velcro on it when placing my iPad onto my Trabasack. This time I was more careful…

iPad with Velcro
As you can see you don’t need a lot of velcro 🙂

This small amount of velcro will keep my iPad secure on my lap but enable me to take it off easily when I want to. Trabasack also sell hook tape so if you need some extra velcro they have you covered. You get two strips in a pack and cut them to any size you need.

iPad stuck to Mini Connect
This photo shows my iPad on the Mini Connect which is attached to my waist.

This position is very comfortable for watching videos or reading emails.

Trabasack Mini

The main selling point of the Mini version vs Mini Connect is that the surface is wipe-clean. Which one you choose will depend on whether you want to use velcro with your Trabasack or not. Having said that the MediaMount does work with the non-Connect version of the Trabasack Mini. The accessory will still hold things in place it just won’t stick items to the tray surface.

The photo on the left shows the MediaMount wrapped around a cup that is resting on the Trabasack Mini. The photo on the right shows the MediaMount curled around itself with a hole in the middle. This is an excellent position for my iPhone and props it upright. This makes it great for video calling. Unfortunately, I couldn’t show this as I needed my phone to take the photos. The pitfalls of having a device that does everything!

Reading

Another thing I use the Trabasack for is reading. I have to say I prefer the Mini version of the product for this over the Curve as its smaller size and square shape is more comfortable for books.

Book resting on Mini Connect

The Mini ensures that I don’t feel the heavy weight of even this big book on my legs! I do slightly prefer the Mini Connect over the Mini in this instance as I can stick the MediaMount onto the Connect Surface to prop the book up at a more comfortable reading angle. I haven’t yet resorted to putting velcro on my books! Thankfully Trabasack products are so stable that I don’t have to.

Conclusion

Both of the Trabasack Mini versions are great. As I use all the products more and more I’m tending to use the Curve as a meal tray and for laptop use and the Mini for everything else. I have got really attached to the Mini Connect with the MediaMount. The main reason I always brought the Trabasack Curve, was because of the bigger lip around the edge. Now with the MediaMount, I have the smaller form factor and a bigger edge all the way around.

Mini Connect on my lap with the MediaMount around the edge

Despite its smaller size, it will still comfortably fit my 13inch Macbook Pro inside it.

I think Trabasack says Laptops up to 14 inches for the Curve and Mini Models and up to 17 inches for the Trabasack Max. Whichever model you choose you won’t be disappointed.

Get in touch if you’d like to ask me any questions regarding these or any other products I use. Keep a lookout for my upcoming blog post that I wrote for Access Rating regarding Freedom Day. I also have some useful and innovative products that I will be reviewing for the Disability Horizons shop so keep your eyes peeled!

Trabasack Curve with Instructions

Trabasack Curve Review

I have been given a Trabasack Curve to review. Whilst this product was sent to me free I have been using these products for many years and have brought several. This review contains my honest opinions and experiences of the product.

What is a Trabasack?

A Trabasack is a bag and a lap tray all in one. It is a versatile product that has many uses. My main use is as a removable tray but it can also be used as a bag and for storage.

The Trabasack was invented by Clare as a lap tray for her son Joe who uses a wheelchair. The tray had to be safe and practical to use. There are now three main models of the Trabasack. The Max, Mini and Curve. The Mini and Curve Trabasack models come with or without a ‘connect’ surface. The Connect models are made with soft velcro material on the tray portion of the Trabasack Curve. This is useful if you want to velcro items so that they stay put on the tray. For this review, I was given the option to receive a Curve model with or without this feature.

Curve Connect or Curve?

I chose the Curve model without the Connect feature for the purpose of this review. I’ve learnt from experience that the ability to wipe the product clean is important to me, not because I’m particularly messy but because I have a dog! As my main use for this product is to eat and drink and having owned a Curve Connect for seven years prior to receiving this review unit. I know that dog hair and crumbs in particular stick to this tray like glue! Connect is a lovely feature that is doing what it is designed to do but it is not particularly hygienic for food if you have a pet that moults!

The Connect versions are great for anything and everything you want to stay in place which I will be reviewing next week.

Trabasack Curve with Instructions

Using the Trabasack Curve

The Curve comes with an instruction leaflet and two straps, one short one long. Which strap/s you use depends on how you want to use the product. As I’m always in my wheelchair I prefer to use one strap around my waist. This keeps the curve as close to me as possible and is the most stable. Due to my disability, I cannot reach around my back so if I’m by myself I connect the two straps together and wrap them around my armrests at the front. This position isn’t as good but at least I can secure it independently. The Trabasack can also be worn like a standard rucksack and slung over one shoulder. It may have been created for disabled people but it makes a really great laptop or tablet bag whether you have a disability or not.

Curve on Lap

D-Rings and ring pull zips

The Trabasack has six D-Rings to which the straps attach. These are strong and sturdy as well as being easy and simple to use. Instead of fiddling about opening the hook and then struggling to attach it to the ring, simply press the hook end of a strap against a D-Ring. The hook will be pushed open and snap onto the D-Ring.

Curve strap hook and D-Ring

The zip runs all the way around the product and the zips are fitted with ring pulls so that the zips are easier to use. Instead of having to grip a tiny object, simply place a finger or thumb in the ring and move your hand to the side to open or close the zip. I keep the zips together as I like the way it looks and I have no trouble gripping them but if you want to make it easier to open and close always have one zip at the front of the curve. That way you only have to pull one zip instead of two to open or close the bag.

Trabasack Ring Pull Zips

Trabasack Curve Tray

The tray portion of the product is not only wipe-clean but also non slip. If, like me, you want the wipe-clean Curve the company does sell a non-slip mat, cut to the same shape as the Curve. This can be very useful and can be kept inside the Curve when it is not needed. I have used one before and keep it handy but for day to day, I find the original non-slip surface good enough for my needs.

The tray portion also has quite a high lip/edge on it to stop items from sliding off. I have to say this is why I brought a Trabasack Curve in the first place. I saw a photo of somebody in a wheelchair, using a Trabasack Curve to carry a plate that contained an English breakfast. This may not sound impressive but the plate included baked beans, the person’s lap wasn’t level and the plate and more importantly ALL the food was on the tray!

english-breakfast

Curve Tray Bean Bag

The reason the breakfast didn’t end up on the floor wasn’t just due to the built-in edge around the tray and the straps. The Curve also has a removable bean bag inside it to help keep it level. If you spend a few seconds setting it up on your lap then it really is very stable. I have leg spasms so this isn’t just empty praise. Before I came across the Trabasack Curve I couldn’t use a tray at all as food simply slid off my lap!

Curve Beanbag

Eating with the Trabasack Curve

Eating outside and using unsuitable tables when out is possible with a Trabasack Curve. Unless I have a lunch box I do prefer to rest the front edge of my Trabasack on a table as then I don’t have to bend to my lap to eat, (my knees make it very low!) Prior to having a Curve when eating out, I had to lean forward as my wheelchair wouldn’t fit underneath restaurant tables. In fact, when we went out for a family meal two weeks ago I forgot that my Curve had been taken off the back of my wheelchair. I then had no choice but to lean forward. Doable but a lot less comfortable.

Dinner Plate on Trabasack

Trabasack Curve and iPad

Weather permitting, I like to sit outside and write, watch films etc so I love my iPad. I love my iPad on my Trabasack Curve even more as I’m not restricted to sitting where tables are.

Another big plus is when I have finished using my iPad I can place my iPad inside my Curve. It is nice and safe on my lap. I am now hands-free and don’t have to worry about people possibly stealing my property from my wheelchair. With my original Curve Connect, I put velcro on my iPad case and stuck my iPad to the tray, giving me even more peace of mind. I actually ruined an iPad case doing this. Trust me when I tell you a little goes a long way! I put plenty of velcro on the case and it worked too well! I had to remove the iPad from the case to get it off my Trabasack!

Storing items inside Trabasack Curve

I wish this bag had been around when I was at school. A laptop up to 14” can fit inside the Trabasack. It wouldn’t have replaced my school bag, too many books but I could’ve kept my personal belongings on my lap. This is what I do now. I find my laptop too heavy on my legs to use with the Curve but many people do. The Trabasack Curve is a fantastic bag for electronics whether you have a disability or not. The padded inside ensures devices are protected.

Price and conclusion

The Trabasack Curve costs £39.95. The Connect version is slightly more, £44.95. I thought this was expensive for a tray and expensive for a bag. I brought my first one telling myself I was ridiculous for spending so much money. This review Curve is my 5th Trabasack. This isn’t because they are not long-lasting. My oldest one has just broken after seven years. The thread holding one of the D-Rings together has broken and years of using it outside mean it’s sun-bleached. It is still perfectly usable. I wanted to have more so I could keep one in the car and on the back of my wheelchair.

If you struggle to eat at standard tables or without a tray. Perhaps you need a flat surface to lean on to read. Maybe, like me, you want a portable table for your electronics. You won’t be disappointed.

If you have or know a child that needs toys etc within easy reach this will facilitate that. A big plus for me is that it’s also more portable and aesthetically pleasing than the trays that Wheelchair Services provide to their clients.

Look out for my review of the Trabasack Mini Connect where I will be adding Velcro to my iPad case, just in a much smaller amount than before!

A period of adjustments

A lot has happened since I last posted. I stayed in, got somewhat comfortable on zoom and start to accept the way things are. Then the world starts to open up again. I’m not complaining far from it! A lot of little and not so little adjustments are needed to get used to going out again. The whole world is in the same boat. This post is all about the changes that are happening and the adjustments I’m making to get used to my new normal.

Adjusting to wearing a mask

Unless you’re exempt for medical reasons we’ve all had to get used to wearing masks. It’s only now that I’m actually leaving the house that I’m using one. As I also wear glasses. This is extra tricky as the steam meant I could barely see where I was going and sometimes had to remove my glasses for safety. Not very practical as my glasses are as necessary as a mask and thankfully a lot more comfortable!

I received a tip from one of the carers belonging to the agency that assists me. Cross the straps that go behind your ears. This was said very matter of factly. The person assisting me to shower was wearing a mask, gloves and apron in a steamed-up bathroom but her glasses were clear! Having tried various methods suggested by the internet, the next time I ventured out I tried it and to my surprise, it actually works!

Do you like my fashionable life jacket?

Reintroducing myself to eating out

My first meal outside my house since February 2020 happened on the 19th of May 2021. As eating out was an activity my friends and I did at least once a month, it was weird to feel so nervous and not know what to expect, especially as I booked a place we used to visit all the time.

Armed with masks and sensitiser we all turned up. I was twenty minutes late as I realised ten minutes after leaving home that I’d left my handbag behind! Prior to this, the only outings I’d been on were walks to the park or around the block. I hadn’t picked up my handbag in over a year! Madness in itself! Successfully checked into the pub via the track and trace app I cautiously removed my mask. It felt lovely and strange to sit close to people who weren’t my immediate family. I felt like I hadn’t seen my friends in years and also as if I saw them last week and COVID-19 was just a bad dream. Regardless, it felt amazing to catch up!

Menu adjustment perk

Restaurants, pubs cafes etc now have their menus accessible via apps on smartphones. This is so that staff and customers can have less contact and to discourage people from moving around. The pub we were at was offering table service as well but they also had an app which could be used to place your order. I hope this survives after the COVID-19 precautions. It was nice to be able to see what options were available to me rather than having to ask other people. It’s very convenient to be able to place your own order yourself and would be more inclusive for people with hearing and speech difficulties too.

Pub-app

Anxiety adjustment

I don’t know whether I’ve mentioned on this blog that I suffer with anxiety. I’ve mentioned how weird but nice it felt to be out. Last year I felt anxious to be stuck in. It’s like my brain has been reprogrammed. As horrible as COVID-19 has been, the lockdown was freeing in a way because I wasn’t worried about getting anywhere or whether a certain place was accessible. Everywhere was shut and suddenly courses/tours and entertainment were online! Living with my family, surrounded by my belongings and my bedroom and bathroom adapted to my needs I no longer had to physically struggle.

Now that I’ve started going out again my old worries are coming back. The flip side to this is that seeing people and being proactive is healing the parts of me that really struggled being in lockdown. I’m a people person, even with anxiety. No situation is without its positives and negatives. I try to be as positive as possible and to organise myself so that my reasons for anxiety are as minimal as possible. Are you feeling anxious about entering the world or even just your street again? I know plenty of people are, even google thinks so…

How do you feel about adjusting to the outside world?

Adapting to study again

At the end of April 2021, I was accepted onto the Academy For Disabled Journalists course. This course started last year and is run by Ability Today. I would have never been able to do this course if it wasn’t for the pandemic as Ability Today is based in London. Moving the course online, the organisers have decided that it will continue to be delivered this way after restrictions have lifted. Another example of keeping things as inclusive as possible. I hope places that have offered online resources continue to do so. I have loved being able to go on virtual tours and experiences. While I miss face-to face-interactions, studying online is also easier in lots of ways. I’m really enjoying the course and I have a press pass. Look out world, (when restrictions are over, obviously!) At the end of the ADJ, I receive a Certificate in Foundation Journalism.

Press Photo

I’m going to be learning skills and knowledge to get me closer to my dream of being a travel writer. Although I’m really looking forward to the video unit. If you suddenly notice a change in my content then this course is probably why. Writing is still my go-to though I don’t think that will ever change.

Since I started writing this post I’ve received confirmation that I have my care package fully funded! I’ll write more details about it later on but it didn’t seem right not to mention it as I’ve used this blog as my catharsis surrounding my care struggles. The only way is up says Yazz and I happen to agree. Until next time.

Naidex: The biggest disability products event in the UK goes virtual

Naidex is the UK’s biggest disability products exhibition. On the 18th and 19th March 2021, the exhibition went virtual. The physical event was cancelled twice due to the COVID-19 pandemic. It is normally held every year in Birmingham at the NEC. The venue has great access for people of all disabilities. There is flat access throughout, hearing loops, assistance dogs are allowed and there are accessible toilets, including Changing Places facilities. The complex is huge though so it is very easy to get lost, even though I go every year!

Putting my woeful sense of direction aside, it is a great event. People with disabilities are in the majority instead of the minority. Almost any disability product you can think of, and a few you can’t are displayed! I was very curious how this would be adapted for the virtual world.

NEC-Website

Registering for Naidex

Tickets to Naidex are free. Booking tickets is as simple as going online and filling in the registration form. This year, a username and password were emailed to me. In previous years tickets, accompanied by an event guide were delivered to my door through the post. A week before the event I received an email. This email contained teasers of disability products I could expect to see. Upcoming speaker seminars were mentioned as well. Companies selling disability aids of all types were showcasing their products: beds, wheelchairs, sensory equipment to name but a few. There was also a handy login link included.

Naidex-Registration-page

Accessing the event

Logging in was simple thanks to the link I was sent.

A top tip: copy and paste the login credentials to avoid mistakes.

The screenshot below shows the login screen. There is an icon that looks like a person in the top right corner. This icon opens the accessibility features, which I’ll go through in detail later. Next to that are text resize buttons and in the lower right corner is a chat icon.

Login screen

Having logged in there was a menu on the left-hand side where I could click on ‘sessions,’ ‘speakers’ or choose to view the ‘interactive product directory.’ There were thirty-four speakers and one hundred and nineteen companies taking part across the two days. I lost count of the number of sessions as many were duplicated for different access needs. A session was where a company had written or pre-recorded a video about themselves or its products. This could be a bit boggling as everything was in list view with a scroll bar to view more making it difficult to know what to look at first as I had to scroll to see what was available.

Accessibility options

To access the many accessibility options available on the Naidex portal involved clicking the icon in the top right-hand corner that looks like a person/stickman. This brought up a menu with more accessibility options than I’ve seen before! An event showcasing disability products should be accessible but it’s still impressive.

The screenshot on the left shows the top of the accessibility adjustments and has options to reset settings, view the access statement or hide the accessibility interface altogether. Below these options are access profiles for differing needs: seizure safe profile, vision-impaired profile, cognitive disability profile and ADHD friendly profile. The accessibility options are scrollable so I had to take six screenshots to show all the options. The right screenshot shows the last two access profiles available which are blind users (screen reader) and keyboard navigation. Underneath this are the content adjustments: content scaling, readable font, highlight titles, highlight links and text magnifier.

The above two screenshots show the complete options for content adjustments, which in addition to those mentioned in the paragraph above, are: adjust font sizing, align centre, adjust line-height, align left, adjust letter spacing and align right. In the right screenshot, the first three options for colour adjustments are shown: dark contrast, light contrast, and monochrome.

These last two screenshots above show all of the colour adjustment options on the left and the orientation adjustments on the right.

The colour adjustments are: dark contrast, light contrast, monochrome, high saturation, high contrast, low saturation, adjust text colours, adjust title colours and adjust background colours.

Orientation adjustments

The orientation adjustments are as follows: mute sounds, hide images, read mode, reading guide, stop animations, reading mask, highlight hover, highlight focus, big black cursor and big white cursor. There is also a ‘useful links’ option in the centre of these adjustments to give the user the option to place a useful link in a position on the screen at all times. For example a link to the homepage.

The disability products

Everything from smart home products, car converters, specialist beds, mobility battery specialists, occupational therapists, sensory specialists, wheelchair manufacturers and solicitors were present at Naidex.

Searching for a specific product

This event can therefore be very useful if you are searching for a particular item. A couple of years ago my main purpose for attending Naidex was to research WAV’s (wheelchair accessible vehicles) as I needed to choose a new car. This year I just wanted to see what new disability products and services were available.

Disability products wishlist

I was particularly interested in the smart home gadgets as I’m always on the lookout for a gadget to make my life easier but as I already have smart heating and lighting, most things weren’t of interest. I will be keeping an eye on how smart locks develop though. As I have someone who can open my front door for me it seems overkill to splurge just yet.

Smart-Lock

Similarly, if I had money to burn I would buy a turning bed to help me transfer in and out of bed easier. These beds not only move how my existing profiling bed does but the mattress also turns ninety degrees and puts you in a sitting position on the edge of the bed. This would make it easier for my PA’s/family members to assist me to transfer and get me dressed and undressed but as I require help anyway and I haven’t got a money tree, this will have to stay a pipe dream.

ChairBed

Interesting disability product ideas to keep an eye on

Another interesting piece of equipment I saw is something called a Showerbuddy. This shower chair comes with its own transferring platform which means that a normal shower cubicle, (those with a step/lip,) can be used. It’s aimed at older people and marketed as an alternative solution to getting a bathroom adapted. The chair is slid into the shower off of its raised base on wheels.

Showerbuddy

Chronus Robotics

Chronus Robotics is a robot wheelchair. It’s compact, slim agile and absolutely no good for me as I have little to no trunk control. I remember being asked years ago if I wanted to try the Segway chairs and having to painstakingly explain that as the chairs were controlled by body movement I’d crash in roughly three seconds! The chair is also able to go up and down so that you can reach things. If you have upper body control I imagine they are great! I wouldn’t want to guess the price though! I’m hopeful that soon one or more of these robotics companies will design a chair that can be controlled more like a conventional power chair.

Seminars

My favourite seminars were:

  • Making a Successful Application for a Disabled Facilities Grant by Paul Smith.

  • Take the chance out of going out with AccessAble’s Detailed Access Guides by AccessAble.
  • How technology can be used to revolutionise the lives of disabled people Shani Dhanda.

There were plenty of others to choose from, on a range of different topics.

Conclusion

Naidex this year has been more accessible than ever! This is due to the fact that the disability products and advice seminars were all available online. I really enjoyed the virtual version. I’m hopeful that the physical show will go ahead in September but I hope that content will still be available online. This would make Naidex more accessible and inclusive than it has been before. I’m definitely getting tickets for September.

The Vaccination Process | Booking, Safety and First-hand experience

I’m back with a guide to the vaccination process! Thank you all for being so patient. Please check out the rest of my posts. The content is the same but hopefully, they are now easier to read and more useful information is provided. I have now added alt text and descriptions of images and videos properly. I apologise to my visually impaired readers for not doing this before. Please contact me if any part of this blog is inaccessible to you, whatever your need or disability.

I received my vaccination on 20/02/2021. While a big part of me is sick of talking about COVID-19 I hope it will help tackle any uncertainty or fear surrounding obtaining your vaccination. It is subjective, as was my post on my experience of the virus, so the opinions expressed are entirely my own and should not replace medical advice.

Booking your vaccination

Many people with disabilities have already had the vaccine as many of us are either in the extremely vulnerable category or category six. I’m category six as I have an underlying disability but have no health issues from that. In England the NHS booking service now says you can book if:

  • you are aged 50 or over
  • are at high risk from coronavirus (clinically extremely vulnerable)
  • work as an eligible frontline health or social care worker
  • your condition means you are clinically vulnerable
  • you have a learning disability
  • someone you care for is at high risk from coronavirus

Physical disabilities aren’t mentioned but don’t let this put you off. Clicking the booking service link above will take you to the NHS website, where you will be asked to enter your date of birth and your hospital number. The system then determines whether or not you are eligible. If you are eligible to book your vaccination you will be taken to a page where you can select a place, date and time to receive it. If you don’t know your hospital number, you will be asked to provide your basic information in order to continue.

Vaccine booking screen requesting hospital number

When trying to book my vaccine in this way the system told me I wasn’t eligible. So it’s worth trying as you won’t be booked in unless you meet the criteria. You’ve nothing to lose!Several people I know and people I don’t have got appointments this way before official invitations arrived. I also contacted my GP as I have to recruit carers/PA’s and felt at risk with the prospect of having an increased number of people in the house, without the protection of immunisation. Understanding my situation, my GP agreed I should be moved up the list but I still had a six-week wait. It is always worth asking!

Safely attending your vaccination appointment

Unless you are exempt from wearing one for medical reasons you must wear a mask when attending your appointment. It is understandable that you may feel nervous going out, especially if you’ve been shielding and this is your first outing in some time. Allow your self plenty of time to get to your appointment, the last thing you want to do is rush.

Think about how you will get to your appointment. Although bus services are still running many people, myself included, find them inaccessible. I’m lucky as my GP surgery is only a fifteen-minute walk/wheel from my house. The taxi firm,Uber, is offering a £15 discount on trips to or from major vaccination centres around the UK and their drivers follow COVID-19 safety measures. In some cities, they offer wheelchair accessible vehicles. Carry out a local internet search for transport services in your area which also may be able to help.

Getting vaccinated

On the morning of my vaccine appointment, I got up and dressed in loose clothing. The needle is inserted into the upper arm muscle of whichever arm you choose. Wearing a jumper with sleeves that would roll up high enough saved me from getting undressed at the doctor’s.

My Mom accompanied me as I need someone with me when needles are involved. This is because my startle reflex could cause my arm to move when the vaccine was being administered. Cerebral Palsy startle reflex means that I jump at loud noises or sudden sensations. Someone holding my arm still is just for safety.

Arriving for my vaccination

We planned on walking but as it was raining heavily my Dad took us in the car. I’m very lucky to have them available to assist me. When we got to the practice there was a big queue as someone had been taken ill earlier that day so COVID-19 vaccine patients were backed up. This prolonged the appointment to one hour and 40 minutes! I was hoping to be in/out within half an hour!

Having joined the queue outside Mom helped me put my mask on and we slowly inched towards the front. When we made it inside the tent staff were using to check people’s details I was told that as I’m a wheelchair user I could’ve gone straight inside and stayed warm. I am affected if I get too cold but only in that it can take a long time for me to get warm again. If you have difficulty queuing for whatever reason it’s worth asking if there are any adjustments that can be made for you.

I handed in the form with my details on and we were shown into the surgery and into one of the consulting rooms. The form asked for my name, address, date of birth and questions about how I’d been feeling the last ten days.

Receiving the vaccine

Once inside the consultation room, I was informed that I was going to receive the AstraZeneca variant. I was a bit disappointed. I’d hoped to receive the Pfizer vaccine instead as I’d heard it was more effective and had fewer side effects. There is no proof of this. Some days later a friend told me they had heard the Pfizer was the worst for side effects, guess things affect people differently.

I was asked which arm I wanted the vaccine in and I chose my left as I drive my chair with my right hand. The needle was in/out before I knew it and it didn’t feel any worse than a scratch. The nurse then told me that I may have flu-like symptoms and a sore arm which should last no more than a week. I was then told I could leave straight away and I didn’t have to wait for fifteen minutes. I’m not sure why but I was asked if I drove, (I don’t,) so maybe that is why I didn’t have to wait. We were in the room for approximately six minutes.

Vaccination card

I haven’t been given my second date yet. My GP practice will send me a link to book my appointment sometime in the middle of May.

Side effects

I had my vaccine at 11.10 am and didn’t start feeling ill till about 8 pm that evening. I then experienced a minor version of the joint pain I had when ill with the virus, together with shivering for a couple of days. The worst thing was the injection site became swollen and sore for roughly five days. I was thinking about ringing my doctor when suddenly the swelling went down.

Conclusion

Even though I was uncomfortable these side effects were nothing compared to being ill with COVID-19. Many people experience far fewer symptoms than me. I would encourage anyone and everyone to get vaccinated. The symptoms far outweigh the benefits both to myself and to society. My only caution. Check with your doctor if you have any allergies, are pregnant, breastfeeding or have a compromised immune system. These circumstances may affect when you can be vaccinated and which variant you are given as there are different ingredients in each.

I hope this post is reassuring. If you would like to ask me anything about the above, please do. My next post will be a review of the recent Naidex virtual event.

Happy New Lockdown

Happy New Lockdown! This was how my brother greeted me on his first day back at work after the Christmas Holidays and I found it so equally amusing and depressing that I just had to use it for this post. I hope everyone had the best Christmas they could and that New Year was a happy occasion for all my readers.

New years eve Fireworks
New Year’s Eve Fireworks

Recruitment

So new year same…activities! Literally! Last year I wrote about how I had lost a PA due to health problems and this year, thanks to COVID-19 I will be recruiting again. I have no idea what this will look like during lockdown but as my Mom helpfully pointed out, I have to find people to interview first! If I seem disillusioned and bitter about the process then, unfortunately, that’s an accurate picture. If any of you have any tips on how to make the recruiting process less stressful please let me know. I’m thinking of starting a support group for people who have lost carers/PA’s this year.

hands clasping
Hands clasping in support

My lockdown plan

On a more positive note, whilst I feel pretty negative about the recruitment process and Social Care in general, I’m determined that this year is the year that I get my ducks in a row! (Runaway Bride reference.) I’ve contacted The Disability Union, to assist me with getting my care package. I’ve signed up for the Lifebook Course to try and get a handle on how I want to actually live as all the assessments and stress has made it hard to see the wood for the trees. It may help or it may be new-age hype but I’m hoping for the latter. I’ll also be more active with Disability Horizons this year, writing and editing content. Check out my piece on free online courses available to stave off boredom and improve skills and knowledge during this latest lockdown.

I don’t know whether this new year equals a new me but I’m optimistic that it’s a year for change. What are your plans for this year? How are you feeling about the lockdown and the fact that there are now vaccines available?

I’d be interested to hear from you if you’ve had the COVID vaccine already. My disability whilst sometimes frustrating thankfully does not affect my health so I’m pretty far down on the list. A fact that I’m both incredibly grateful for and at the same time, I’m impatient for the world to be vaccinated so we can get back to whatever normal there is for us all. Who’s with me!?

Screenshot zoom Dance

International Inclusion Day For People with Disabilities

Yesterday was International Inclusion Day For People with Disabilities. I hope everyone has had a great day. Apart from more disability-related posts on social media today has been the same as many others for me. Awareness of the need for inclusion and its benefits is growing. This is a good thing for breaking down barriers that disabled people experience. Barriers still exist.

Inclusive Dance World Vision Festival

On Tuesday, 1st December 2020, my dance group were part of an inclusive dance festival in Moscow. Britain, along with many other countries celebrated the inclusivity of dance. The festival showed how everyone can be included and have fun. The Inclusive Dance World Vision festival apparently happens every year with amazing dancers travelling to Moscow to compete. Due to Covid-19, videos were submitted this year and the whole event was live-streamed on the day.

Inclusion in dance

I did plan on posting our competition entry but that will be revealed at our Freewheelin’ Christmas show on December 18th. Instead here is our first competition dance from a couple of years ago.

Inclusion for everyone

The disabled community continues to advise and raise awareness so access and acceptance will continue to increase. Everyone should be included no matter what their disability, race or religion. The barriers I face as a disabled person are mostly caused by society. Days like the International Day For People With Disabilities, Purple Tuesday and the Inclusive Dance World Vision festival show that attitudes towards disability are changing. Change is happening, this is proven in the thought that now goes into designing buildings so that they are inclusive.

Interview with Sam from PHB Hunters

Sam-Stickland

About Sam

Sam resides in North Wales and lives with a disability called Limb Girdle 2e Muscular Dystrophy which is a progressive condition, meaning her needs have increased/grown more complex over time. Sam is now forty and has been employing her own PA’s since she was twenty.

To begin with, she did this with the help of The Independent Living Fund, a benefit that unfortunately no longer exists. When the Independent Living Fund was scraped her local authority funded her entire care package, continuing to provide funds through her Direct Payment.

Agency workers

This worked well until Sam’s Social Worker persuaded her to use an agency to carry out her care rather than employ PA’s herself. At this point, her Social Worker applied for her to have half of her 24-hour care package funded by CHC. Sam agreed due to pressure, lack of support and her continued struggle to have a working contingency plan in place should any of her PA’s be unable to work. However, as soon as this decision was made Sam lost all autonomy and had very little or no say in how she lived her life.

Back with the Direct Payments Scheme

After a lot of battling with her local authority, Sam now employs PA’s once again through a Direct Payment, enabling her to live her life the way she wants to. She has this option as she is jointly funded by BOTH the local authority and CHC. This option is not available to those like Rhys who’s care isn’t jointly funded.

Sam campaigns with Rhys to try and ensure that all citizens in Wales, not least Rhys himself has the same freedom that she enjoys regardless of how they are funded. Below are the questions I sent to Sam after I saw their campaign on the BBC website and later on Facebook, Welsh PHB Hunters (Every human being has the right to be free.) The questions were sent before I knew she had won the right to have her Direct Payment again, which just goes to show you should always fight for your rights.

1. How long have you had your current care package?

I’d say from March, as I’ve been able to hire my own PAs since then, through a jointly funded package. However, I now believe I had a jointly funded package for almost 3 years, but I was falsely told by social services that it was CHC funded and therefore I was unable to use direct payments to employ my own staff. I now distrust my social worker and the people who are supposedly there to help us.

2. Are the agencies that are assisting you currently person-centred in your opinion? I.e. do they listen to you?

I no longer use a care agency, but can say that when I did they all said they were person-centred, but that only went so far, my views and opinions weren’t listened to when it really mattered, and they were just a business trying to fill their contract requirements any way they could.

3. Do you have any say in how your care calls are structured?

Yes, I have complete control now. I do the rotas, ok holiday, and I am in charge of all employment matters. Although I am checked in on a lot by nurses and social worker, (pre covid.)

4. What reason have you been given for the discrepancy between the assessment carried out by Social Services and the one by NHS? Needs are needs surely?

This is a Rhys question but from my perspective. My social care team really wanted the monies to come from health to save them money, they did not support me at all, and it was the health side that agreed my needs weren’t nursing as the social care team were trying to suggest.

5. How did you meet Rhys?

I was talking with Rhys and we can’t remember exactly how we found each other! It was through our fight for care and somehow we started chatting over Facebook. Since then we have spoken every day and started a long-distance romance!

6. In August, you wrote a letter to the Welsh government. Why now?

I think we both wrote letters prior to this, mine began in February, but at that time I was unaware of Rhys’ campaign. Once I connected with Rhys, I upped the ante and began to fight for PHBs as well as for the framework on legislature changes for joint funding to be made clearer. We have since written to charities, disabled organisations, magazines, MP’s and AM’s. Basically, anyone who will listen and support us.

7. Why do you think the push to use agencies is so high, are they more cost-effective? In England, agencies are more expensive than hiring your own PA’s/carers.

They generally are not cost-effective, but I believe that the social care team see them as an easy solution to them, less paperwork and less face to face work. They leave any issues to be dealt with by the agency involved, which leads to more problems for us. CHC funded care must currently use agencies in wales, hence the fight for PHBs, I believe this is to pass over any accountability to the agency instead of the NHS, and due to the work needed to change the current framework. It isn’t about what is best for us.

8. I read on your Facebook page that Direct Payments are unlawful when using CHC do you know why? Has anybody explained this?

It’s just not allowed because of the current CHC legislation. If you are jointly funded it is lawful, but it is not well known, as I found out during my fight. It needs to be clearer for users and the organisations involved.

9. How is a second lockdown affecting you?

The lockdown is hard, I miss seeing my family and my niece who’s grown so much since this all began. It obviously makes a long-distance relationship harder as we can’t travel as much. I had plans to travel this year! 😂 I worry about covid obviously but my PAs are all taking precautions to safeguard me and I appreciate that immensely. 2020 has been a hard year for everyone.

10. What does a typical day look like to you?

This is probably more Rhys, as I have a PA 24/7. I can get up at a time of my choosing; toilet, eat etc when I want. My only constraint is being in bed by midnight, as I have a sleeping night and PAs have to have 8 hrs sleep. Breaks for PAs are quite flexible depending on our plans for the day.

11. What do you do to relax?

Photoshop, and artwork. I can spend hours doing this on my computer, as it clears my mind. I love a bit of Netflix, music and days out with family or friends (pre covid). I try to study something new as often as I can, but Rhys’ campaign has kept me busy since August, so I’m only doing short courses at the moment.

12. Have you been given a reason why individual cases can’t be heard but group cases can?

I think this is just policy for the heads of departments, such as Vaughan Gething and Julie Morgan. We are encouraged to contact our local ministers.

13. Can you explain a bit more about Independent User Trusts? Why are they not suitable for your needs?

We have had difficulties with this ourselves so I’m just going to use what we currently have.

The Welsh government are proposing Independent Users Trusts (IUTs). An Independent User Trust is described ‘as a commitment on the part of trustees to manage an agreed sum of NHS money (or other resources) in a way that puts the individual at the heart of decision-making and gives them choice and control in their life’. Confused? I know I am? I ask is this clear? Because we have struggled to get a clearer definition so bear with us a little.

IUTs are in fact one of the ‘methods’ that an individual can now use to manage a personal health budget when a direct payment is not possible, AS IN WALES Right? But we are not being given the option of utilising the other methods, just an IUT.

So it’s our understanding:

• You have a team of 6 trustees almost like a syndicate.

• You get to choose who those 6 people are “how generous”.

• You speak to them, and they then speak to the NHS.

• They make a decision for you over how your care is provided, “bearing in mind it’s your care”.

• And they control the purse. “So we never, in fact, see the money ourselves.”

So, they are making us answer to a group of individuals, which granted, we can choose, but they decide and then purchase that care for us!

Is this not completely obscuring the idea of independence?

We are accountable adults, who have self-control over our own life’s, and finances! So why are they suggesting we are incapable of taking care of our care finances? The notion is completely condescending! The only thing that makes us different from everyone else, is a physical disability?

In our eyes, this means that IUTs fail to put individuals at the heart of the decision-making process, and instead take away our choice and our control over our care. Which surely we deserve? It merely mimics the same system currently in place, just given a new name… In line with the Social Model of Disability, the Welsh Government says it is committed to disabled people fulfilling their potential and achieving their ambitions and dreams, by removing barriers that get in the way of such ambitions. The Welsh governments current IUT plans are building these barriers up, rather than demolishing them, are they not?

We truly can’t understand how our own Welsh government thought it was okay, to put people who needed 24-hour care in a situation, where they don’t have any choice in who provides their care for them.

My thanks to Sam for answering my questions.

Having had several written conversations over social media with her, I have to say I completely agree that the proposed solution, Independent Users Trust’s, (IUT’s) does not give disabled people the freedom and autonomy that they are requesting. I can’t understand why a Direct Payment is available in one instance and not another! Judging from the campaign, I’m not the only one.

If you want to find out more visit the Welsh PHB Hunters Facebook page. They welcome any support, wherever you live and are currently looking for people who have experienced agency care to participate in an article they are writing. If you’re interested send them a message here.

Stuck In A Rut!

I’m stuck in a rut and have been struggling with what to write for nearly three weeks. In short, I’m having a self-esteem crisis and a bit of writer’s block. The ideas are there I just haven’t been able to do much with no mobility aids. I hate feeling useless and thankfully, with the return of my chair last week I’m beginning to climb out of the rut my mind has dug for itself. It has got me thinking though about the pressure that is put upon us to be productive. This post would’ve probably been more topical on World Mental Health Day but better late than never!

Being productive improves my mood

I’m the type of person that’s happiest when I have things to do and I feel useful and I think most people are the same. I’d love to know what you do when you’re stuck in a rut, bogged down by monotony, what helps you breakthrough and feel more like you?

Wheel out of that rut!

The first thing I did when I got my wheelchair back was head out for a short walk/wheel around the streets close to my house…I’ve just read that back, maybe around the neighbourhood sounds better? Anyway, it helped. Being able to be somewhere, by myself, helped and that’s what I’d been missing for three months, alone time.

I realise this post is a bit rambling but I just wanted to share my thoughts here. Writing is cathartic for me.

Rhys update

I have heard from Rhys Bowler but he’s been busy writing a speech for the Disability Cross-Party group of The Senedd, (Welsh Government.) The meeting was a week ago so I’m hoping to find out how it went soon. In the meantime, I have sent Rhys and his friend Sam my interview questions and Sam has very kindly shared her story with me. I’ll post it here next week, giving her a chance to see my write up first.

Blog post requests?

Please get in touch with what you would like to read from me. Any and all questions are welcome. I’d love to write a series about how I’m travelling the world but unfortunately, that’s just a pipe dream at the moment, as it is for many others in this COVID-19 environment.

The importance of choice and control

Firstly, thank you to all my readers and followers who have read my blog so far. I’m sorry there have been no new posts for a while but the last month or so, since I posted has been very hectic. This post is about the steps I’m taking to try and gain more choice and control in my life.

Staff equals choice

I mentioned in a previous post that my PA’s were starting soon and that I would share details with you lovely readers about my journey. My two PA’s started the week of the 17th August 2020, both seem lovely and employing them is my first step back to choice and control since COVID-19. What I didn’t count on is that the agency that I’d contracted back in March 2020 to assist me would also want to start on the 17th of August! I employed the agency while I was waiting for the paperwork on my PA’s to be processed and completed. The DBS checks took forever even before COVID-19!

People are like buses!

The week starting 17th August 2020, I had seven different people come to my house! Worse they were invited! I was putting myself through meeting these people in the hope that I’d gain freedom and control in the long run. There’s a well-known expression about buses and them all coming along at once. After eight months of having no formal care suddenly people were everywhere!

Buses

This is very positive in one way as it gets things moving. It was obvious to me at age eleven and is now even more obvious at thirty-four that I can’t rely on my family forever. They deserve choice and control as well! I’ve moved out of my family home three times in my life so far but it has never stuck permanently because of my lack of choice, control and the barriers in my way!

Money facilitates choice and control

I’m still fighting for a bigger direct payments budget. Having the money to pay people for what I actually need would go a long way to removing barriers and afford me more choice. Money does that for everyone, disabled or not. Money makes the world go round!

My petition for more money to meet my needs isn’t going anywhere. Just recently my social worker applied for the emergency COVID-19 fund as CHC, (Continuing Health Care,) isn’t currently assessing people. My social worker was told I’m not eligible and advised her to tell me to use a Shewee!

What is a Shewee?

A Shewee is a plastic device to enable women to pee standing up. Never fear lovely readers this isn’t going to become an in-depth account of my personal habits. Now I could do a whole separate post ranting about how if I could stand up I could probably transfer and not need the device in the first place! Let me know if you’re interested in reading that, but my current thinking is that I’ll bore you to death, so let me just say, in fairness, that some disabled people have apparently found it helpful.

I’ve tried it and many variations thereof and am unable to use them sadly. Not to mention that this device, if useful, would only solve one of the things I need assistance with. My Social worker has advised me to put in an official complaint and I’m still waiting for the payroll paperwork to be completed in order for my PA’s to be on my payroll and have payslips every month. This is despite the fact that they have now been working for me for almost three weeks! #DirectPaymentHeadache.

Inclusive access gives choice and control

In other, more exciting news. I’ve started writing for Access Rating as a content writer. The company is run by disabled people and they aim to improve disability access by offering businesses access audits and encouraging people to record the accessibility of the places they visit. They have created an app that enables anyone to rate venues based on how accessible they are. It’s an idea that’s been done before via review websites but this is the first app that I know of. The rating system is really easy and takes less than 30 seconds unless you really want to add detail.

I’m really excited to be working with them as it helps me influence greater change and choice for a more inclusive society. The app gives everyone the chance to have their say and is free to download. Check it out and rate your corner of the world. 🙂

Personal Health Budgets give choice and control

If you’ve checked out my Facebook page recently you’ll see that I shared a link to BBC news which tells the struggle of a man in Wales to be allowed to manage his care package through a Personal Health Budget. You can probably tell that I am not a big fan of the way Social Care is run but I was genuinely shocked to learn that Personal Health Budgets aren’t an option in Wales! They may be a headache but they do offer the most choice and control for a lot of people.

What is a Personal Health Budget?

A Personal Health Budget is different from what I currently receive as I receive Direct Payments through Social Services. As I’m asking for a bigger care package my Social Worker is trying to get me funding via CHC. If this happens my needs will be fully funded at least partially by the NHS. I could still receive my money as a Direct Payment. As things stand at the moment Rhys and others like him can’t. The NHS decides what he receives and who provides that. I’ve since reached out to Rhys and been given permission to send him some questions.

I’m curious as to how he manages in a system that, according to everything I’ve read, takes away most, if not all, of his choice and control and I’m hoping I can assist in some way. I may be in limbo in many ways but at least I can choose who assists me.

I’m so grateful for the choice and control that I do have and having that inspires me to improve things for us all. This keeps me going, especially as for the last month both my electric wheelchairs require repairs! My private Power Chair has an as yet undiagnosed technical fault and the wheelchair given me by wheelchair services has unsuitable footplates and armrests meaning I can’t leave the house in either one! I have two chairs and I only need one to be working. When I next post hopefully they will both be in working order. What was that about buses?

pig-laughter

Until next time.

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