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.

Using Mouth Piece Ventilation (MPV) – Non-Invasive Ventilation

I have been trying out MPV over the last week and I want to share my initial impressions.

Firstly, I should explain my usual use of ventilation during the day. Normally, I use a face mask connected to my NIV machine during the day when I need a bit of help with breathing. This is around 2 to 3 hours per day, mostly after meals when I feel a bit full and need a boost.

With MPV, I’m using a small straw to take in air instead. When I suck the straw, it activates the machine which pushes in more air and gives me a bigger breath. The small size of the straw helps to increase the pressure of the air going in, increasing the volume to give me a bigger breath. The NHS has provided me a Philips Respironics Trilogy, which is quite a new product.

So far, I have found MPV to be very good at giving me deeper breaths. It works better than the face mask even though it takes a little more effort to activate the NIV. It feels that I get just as much relief and comfort from the straw, and I have been able to adapt to using a mouth-piece very easily. Not having to wear a face mask is definitely a plus because I can keep talking without sounding muffled or quiet. Furthermore, it also made a positive impact in terms of my breathing. I had a blood gases test after four days using the MPV which showed a decrease in CO2 retention and very high oxygen saturation.

Additionally, there is an option to attach the machine to my wheelchair so it would be portable and I could get the benefits of the NIV when going out and about. Hopefully, there will be a practical solution because I think it would be great to have.

Regular ‘Maintenance’ physiotherapy for Duchenne

I am of the opinion that having regular physiotherapy is an important part of managing muscle-wasting conditions like Duchenne. I have had physiotherapy for a number of years and I think it has done me a lot of good. I am a firm believer in its usefulness for Duchenne patients to maintain the condition of limbs, joints, and muscles. I have had physio regularly between the ages of 11 and 24.

It was provided especially when I was under paediatric care throughout primary and secondary school, and took place every week or so. When I was younger, physiotherapy wasn’t necessarily my main concern and it did seem like a drag. In primary school for example, I remember occasionally trying to avoid having physio by hiding with my friends or pretending I had forgotten what day it was.

But, I came to realise how important it was to keep me feeling comfortable in my wheelchair and keeping me flexible enough to be able continue to do everyday activities such as putting on clothes easily. However, the amount of physio I have had has decreased over time, and now I moved completely into adult care services I no longer have any at all. It was explained to me that the support for regular maintenance physio no longer exists. You are still able to see a physiotherapist if you have specific problems, but for the most part you have to do it yourself. Although this is manageable, it would be great to see more professional support for adults with Duchenne.

This again seems to come down to funding and availability. In my experience, child services are well funded and prioritised (and are excellent) whereas adult services drop off almost completely. It is baffling that services fall so dramatically for adults considering that conditions like Duchenne progressively worsen and need more help as you get older.

I have read articles on a number of websites that discuss the importance and benefits of physiotherapy for muscular dystrophy patients to prevent contractures or reduce pain. A quick search also reveals a lack of physio services for neuromuscular conditions across Britain. Having more services for adults with muscle-wasting conditions makes a lot of sense to me. Physiotherapists are very important in this regard, and I think that greater support for and also access to these services is necessary.