Commonwealth Games 2022

This years Games in Birmingham has been very positive for disability and para-sports. The event has again integrated para-sports into the competition and tallied the medals into a single table. It makes history as the largest para-sports programme with most number of para-sports medals up for grabs. This is a great step for raising the profile of para-athletics and demonstrates that disabled athletes are just as significant in competition. This Games has a record 42 para events, including powerlifting and 3X3 basketball, up significantly from previous meets which displays the growth and acceptance of disability sport.

The added exposure of showing disabled athletes competing is a positive for disability in society more generally. It has been pleasant to see disabled athletes performing alongside fellow able-bodied competitors in front of full stadiums and bigger crowds, rather than a separate competition, giving a more inclusive feel. Integrating the events has felt completely natural and has provided excellent stories such as that of Micky Yule. Hopefully, the positivity created by the Games will continue to drive change and highlight disability on a global scale.

Routines

I have quite a rigorous daily routine which has both its benefits and its downsides. As a profoundly disabled person, your daily routine makes life easier and allows you to make sure that you are managing things like your health properly. For example, I take my tablets when I get up and I use my cough assist machine three times a day. It allows me to plan around my day and have a nice structure in place.

However, my routine can make me quite inflexible some times and this may not always be obvious to other people. It can take a long time to get out of bed, and to get ready, and things like when I use the toilet can make my routine quite rigid. This can mean a lack of spontaneity when it comes to going out. It also can make appointments difficult to arrange in the early mornings as an example.

It does feel like there can be a lack of understanding when it comes to this for people with disabilities. I have found this recently with appointments, sometimes it is difficult if an appointment is changed without warning. A couple of weeks ago, one of my appointments was made two hours later with very little notice, and this was very disruptive.

Smartphones and accessibility

Using my smartphone on the weekend got me thinking about their accessibility for people with disabilities. It got me thinking how difficult it would be to use my phone without technologies like bluetooth. I have a bluetooth module connected to my wheelchair that allows me to connect the joystick to the phone. This is a great thing for me as it lets me use all of the features as intended which increases my independence. Without options for easier access, disabled people could be unable to benefit from our world of great technology.

With the newest iterations of phones, it seems like accessibility is improving for people who have difficulties in using their arms or hands. The standard accessibility features have increased over time with features such as AssistiveTouch or TalkBack. However, it still feels like more is needed to improve the accessibility of smartphones to everyone, with specific apps made for people with mobility issues. For example, the app I currently use is now unavailable so if I upgrade models I would have to look for an alternative.

I would love to see many more apps created that aim specifically to help people who struggle to use phones in the usual way. But it isn’t just apps that can be prohibitive. The cost of arms, clamps and smartphone holders can be very expensive if you want to attach your phone to a wheelchair in a safe and secure fashion. Some of the accessories can cost hundreds of pounds which will be a limiting factor for people. I currently have a small phone mount that sits on my desk but also a flexible arm from Manfrotto that can attach to my wheelchair for going out.

There are a number of websites that can be useful such as Manfrotto, aacmounts, rammount or merushop, and they sell various mounting options that can help create the best set-up for your device.

Welsh cross-party meeting on Muscular Dystrophy

I recently attended a Senedd meeting on Zoom about Muscular Dystrophy, which focused on how Covid had affected people with neuromuscular and muscle wasting conditions in Wales with regard to their medical care. It was attended by politicians, doctors, patients and other clinicians who discussed various issues that have affected the levels of treatment afforded to those with muscle wasting conditions both throughout the pandemic and prior to it. A prominent politician present was Member of the Senedd Rhun ap Iorwerth, who intended to help lobby Welsh government for more action.

Those present spoke of the negative impact of Covid shielding on the care of neuromuscular patients, which caused lack of access to care, disruption to services and delays in receiving treatment. Over the pandemic, Muscular Dystrophy UK carried out a survey of people with muscle wasting conditions across Britain which showed the problems caused by the pandemic. However, some of the problems highlighted were present even before 2020. These included lack of funding, not enough specialist staff and a reliance on the goodwill and efforts of individual health staff who end up burnt out and leave their roles. The pandemic meant that people with muscle wasting conditions missed out on appointments and treatment, and were left isolated from society whilst shielding. I was interested to hear the thoughts and feelings of other people with forms of Muscular Dystrophy, and those in charge of their care as many of the things spoken about are issues that I have dealt with personally and have seen for myself. As such, it was good to have confirmation that it is a common experience and that things do need to be done.

In the meeting, Muscular Dystrophy UK went through the findings of this survey and discussed five priority areas that were needed to ensure care for those with neuromuscular conditions continues and improves going forward.

1. more funding – the allocation of more money and more consistent funding directly for the care of neuromuscular patients

2. creation of a network manager role – this individual would help to push through directives and implement change with regard to patient care and the Wales Neuromuscular Network

3. more specialist staff – particularly psychology and mental health services, but also neuromuscular physiotherapists, nurses and neurologists etc

4. easy access to new market drugs – providing better and timelier introduction of specialist drugs to those with neuromuscular conditions

5. more staff in the community – introduce more trained neuromuscular staff who can work in the community to bridge gaps within the system.

The importance of improving the services for people with neuromuscular conditions cannot be overstated. People with muscle wasting conditions have complex needs which require complex long-term care from multi-disciplinary care teams. Not having adequate care can reduce the quality of life of those with neuromuscular conditions and potentially reduce life-expectancy, so making sure improvements are made to care services is vital. Increasing funding and awareness are therefore paramount to making meaningful change in this area.

Attending hospital appointments in Covid times

I went for an in-person hospital appointment a couple of weeks back for the first time in about 18 months. It was a slightly strange experience after spending such a long time shielding and staying at home because of Covid, and it went without a hitch. It was a cardiology appointment which I was glad to have because I had been feeling some anxiety about my heart rate and having not been seen face to face for an extended period. I was a bit apprehensive going into a hospital but it was no problem at all. I wore a mask, followed the one-way system and the place was very quiet so I felt at ease. I felt only one moment of slight unease when five people entered the tiny room to look at my echo scan but that was still okay. All of the tests were fine and I was reassured by chatting with the consultant and the nurses.

Despite not going to a hospital, I have still been attending virtual appointments over the last two years and seeing respiratory nurses and others at home occasionally. Having telephone consultations and video calls have been very useful during the pandemic for people with neuromuscular and muscle wasting conditions to access some services but face to face meetings remain vitally important when it comes to medical care. A recent report undertaken by Muscular Dystrophy UK (linked below) has highlighted this point, as difficulty in getting appointments has been shown to be detrimental to the physical and mental health of people with neuromuscular disabilities.

https://www.musculardystrophyuk.org/static/s3fs-public/2021-11/POL14%20-%20WalesVersion-Impact%20of%20COVID%20report.v4.pdf?VersionId=5OjOr0ezmTJQ3AEL8C7xVdn725MAojfG

Importance of comfortable seating

Making sure that your wheelchair cushion is comfortable and supportive is very important, especially when you sit for most hours of the day. Having the correct seating is good for my posture and balance, but I can be thrown out of position by very small alterations to my seat. Often when I have had discomfort it has been related back to the seat and how supported I am feeling. When the gel-pack my cushion leaked recently, I had to have a new one and it changed my height in the chair. This had knock-on effects onto my legs and head position. A change of just 1 or 2 inches meant that I had to put things under my feet to lift them up to stop my legs feeling painful.

The cushion is not the only thing that keeps me comfortable. In conjunction with my lateral support and chest strap, I am held in a relatively stable position that has kept me seated well for a number of years. Sitting all day and wanting to be in a good position has implications for normal activities, and being comfortable is especially necessary. Fortunately, over the years I have worked well with some great seating and wheelchair healthcare professionals to keep me in a good position and they have provided lots of input. This service is definitely an important one for people with wheelchairs, so it really should be seen as an essential part of adult healthcare.

One good thing we have found to prevent discomfort is occasionally giving the gel pack a bit of a beating to push the gel around and spread it back out properly. If I am uncomfortable it does seem to help as the gel tends to settle in one spot after a while. I currently have a JAY J2 cushion on my chair.

Food I miss

Food has become more difficult for me to eat and the vast majority of my meals are now blended and put through a sieve to make it easier. Losing weight is a big concern for someone with DMD and has to be maintained. Not being able to eat whatever I want is a challenge, it’s not just the concerns about weight or choking but also that it can get me down mentally. However, we always try different dishes to see if they can be liquidised or made in a way that I can manage. It isn’t quite the same as eating something whole but it can still work.  I generally have a positive attitude towards this part of my routine but there are certainly foods that I miss eating, and I want to share some of them with you.

Rice – This may seem like quite a boring one but I did used to enjoy eating rice-based dishes like fried rice with vegetables or chicken and rice. It does not go through a blender very well and likely would not make something with the right consistency for me. Carbs like rice and pasta cause this problem so I steer clear from them.

Sausages – They were one of my favourite things to eat. It could be on the BBQ, a fry up, in the oven, sausage and mash, toad in the hole, these are all great things that I really enjoyed. I definitely crave a sausage sandwich with ketchup on occasion. However, I do still eat sausages as part of my diet albeit in blended form as it works well in soups or casserole.

Fish – This is a more difficult thing blend and is much less enjoyable after so we tend to eat it less. We used to eat fish a lot and I would normally pick it when we went to restaurants. I really miss fish and chips as well. But again, this doesn’t mean that I can’t eat it at all in different ways. I have had fish in different sauces and also as a mousse so it can work even though it isn’t quite the same.

Paralympics

The Paralympics is on again and I have enjoyed watching the games so far. The Paralympics is an excellent platform that really shows off the incredible capabilities of people with disabilities. The athletes display an endeavour and strength that doesn’t fail to be inspirational to me as a disabled person, and I find it brilliant. Being able to watch so many people with such a diverse set of disabilities gives others a chance to see themselves within the games and say “that could be me” or make them want to try something new. It is a positive story about inclusion and how disability should be seen, not as a problem or a hindrance but as something to be made visible and celebrated. The games demonstrate that having a disability does not limit a person’s ability to achieve and strive, even if it may present additional challenges in their daily lives.

Despite all the great things that the Paralympics brings such as exposure, however, disabled people are still too often forgotten about or mistreated in society, or seen as second-class citizens, which has been highlighted further during the Covid pandemic. The Paralympics acts as an excellent reminder and a big positive for disability but it should not be the only thing that creates a discussion. It should not be the one time every four years that there is a focus on disability awareness, advocacy, and social change. Governments have to be the ones to act to reduce discrimination or increase funding, for example.

There are many different events but some of my favourites have been the wheelchair rugby, boccia, archery and swimming.  Watching swimmers with physical difficulties in the S10 category such as no limbs going so quickly is nothing short of remarkable in my eyes, and boccia allows competitors with a range of abilities to all compete using different equipment so is also fantastic.  Team GB have won numerous medals across many sports so far (80 and counting) and there have been some truly great moments for me. GB became the first ever European team to win gold in the wheelchair rugby, Hannah Cockroft won the T34 100m with a new world record, and Lee Pearson won yet another Equestrian medal, to name but a few. Additionally, I hope that David Smith will be able to win in his gold-medal Boccia match to become the most decorated British player tomorrow.

Hotels and Accommodation – Disability friendly rooms/ accessible / wheelchair friendly

In this post I am going to talk about how accommodation (hotels, guest houses, etc) advertised as accessible and disability friendly is not inclusive for all disabled people.

Oftentimes, accommodation is presented as accessible or ‘disability friendly’ when it is not. Many hotels, holiday homes and cottages are described as fully accessible when they lack certain facilities that are necessary for people with severe disabilities to use and be unrestricted. When searching for somewhere to stay in the UK, there are certain facilities and features that I need which are largely lacking. I find myself checking off criteria on numerous websites only to find a major problem. On the plus side, features such as ramped access, wide spaces, en-suite bathrooms and grab rails, are included, but for the most part two vital pieces of equipment are missing. The most important piece of equipment for many with physical disabilities is a hoist, and not enough places provide them. A powered bed is also a very important need but one I find secondary to the hoist as it is possible to cope without. Therefore, these places are not satisfying the needs of all disabled people so should not really claim to be accessible for all disabilities.

For many people with severe physical disabilities like myself, grab rails and ramps are not enough to make a room truly accessible. Because of my limited function, I require the hoist so I can use the toilet, wash, get dressed and go to bed, and far too many places don’t have this vital equipment. Either mobile or ceiling tracked, having a hoist is the make or break issue when trying to go away anywhere. Though mobile hoists are welcome, ceiling tracked hoists are so much more convenient and easier to use, but very few places install them. As a side note, mobile hoists can sometimes be restrictive due to the size and can be blocked if a bed is too low to the ground, but ceiling hoists avoid any such problems.

Hoists open up the accommodation to a much larger group and allow people with disabilities to travel and participate in ‘normal’ activities that everyone should have access too. Furthermore, the equipment does not break the bank in terms of cost, it can be locked when not in use, and doesn’t prevent anyone from staying.

I don’t think that it comes from a place of malice but one of lack of knowledge. If more people are made aware of the issues they can respond to them. Ideally, many more places would have at least some rooms with ceiling track hoists and electric powered beds. I think that there may be some benefit for people in charge of accommodation having more help and guidance, perhaps even from the government, to ensure everyone can indeed access such places.  

When I went holiday in 2018, it was so nice for me and my family to be able to go somewhere where my needs were fully taken care of. The owner had experience with a disabled family member so had installed a ceiling track hoist into a bathroom and an adjustable powered bed. It gave us so much freedom as there was no fear of not having somewhere to get changed or sleep comfortably.

Universal Credit – My experience

Recently, I started claiming for the Universal Credit benefits. Applying for Universal Credit was quite a saga for me and my family, and I want to share my thoughts and go through some of the parts of the process. The application can be difficult to navigate in places and there are several obstacles to overcome as someone with Duchenne before you can receive UC benefits. It took nine weeks from the time I applied to when I received my first payment. Fortunately, I was not in a situation where I desperately needed the money but this could certainly be a problem for other people if they had to pay for carers or other necessities.

In order to begin claiming you need to create an account. This seems straight forward, but I encountered an issue at the very beginning with proving my identity. I needed three items and there were limited choices of documents to use as proof on the UC website. I do not have a driver’s license or my own mobile phone contract for example, so someone had to come to my house in order to prove who I was. To further complicate matters, my father is authorised to act as my appointee (to help me with things like signing documents) so we also needed to prove this too.

After setting up an account, there are several forms to fill in and documents to send in order to get the ball rolling. One problem with the website is there is nowhere to select what specific benefits you are applying for which seems to unnecessarily complicate the claims process. Once I began the claim, I needed proof of my disability. It was necessary to provide a note from a doctor to prove what medical condition is preventing you from working. I then had to fill in the ‘work capability assessment’ form, a very long form detailing your everyday activities and what you can and cannot do, within a month.

Despite already going through the process for Personal Independence Payments, which entailed filling in a very similar form about day to day living, and having qualified for the higher rate, there is no way to show that my disability has already been verified by the Department of Work and Pensions. As Duchenne does not improve and has no ‘cure’ currently, it should not need to be assessed twice or more. Therefore, I think it would be good if the DWP could check your history and check medical conditions before asking for the same documentation multiple times.

I had to complete an interview over the phone as well to go through a further assessment. Completing the forms and sending the doctor’s note before this interview turned out to be very useful as I avoided having to repeat certain answers about how you are disabled and what problems you have. At the end you agree on certain commitments such as attending medical appointments, and then I began receiving payments.

Sometimes there is a need for a face to face interview, but my answers on the assessment form were sufficient to show that my condition qualifies for the benefit, meaning I was placed into the ‘limited capability to work’ group without having to be seen.

Hopefully this post gives people a better idea of the process. Please leave a comment if you liked it.