Navigating the NHS breast cancer screening as a wheelchair and ventilator user with scolisis and very limited mobility was an adventure of resilience, humour and adaptation. This was my experience.

While facing physical challenges like hip dislocation and shoulder pain, I've been strategizing wheelchair access for my mammogram appointment, getting mobility equipment tested and organising Christmas PA cover.

Navigating NHS services can be a frustrating experience, especially when communication fails. As an NHS patient, I highlight the challenges faced by those with communication impairments.

Misinformation and eligibility changes in the NHS flu and covid vaccine program have caused distress among care workers and vulnerable populations. I recount my experience with dual vaccinations and the challenges faced by carers obtaining theirs.

Each week my PAs send me pictures of their 2 covid tests - that would normally be 10 really boring photographs … some have been creatively adding some cheer to the dullness. I love seeing what they come up with!!!

I’m designing a new headcap that fits without horrendous pain from pressure sores, mask leaks and neck pain. To keep a mask fixed to your face, if you use CPAP for sleep apnea or BiPap for ventilation, you need headgear. Masks come with these headgear/straps (think like a horses bridle) but if you don’t have muscles or fat around the back of your head and have no body movement other than a few finger and toe wiggles when laying down ), these can cause pressure sores and immense pain. A key mask company used to make one (paid for by myself) - but that was discontinued a number of years ago.

People with my type of dystrophy are affected very differently. I have a severe form. I was diagnosed at age 7 and the medical books said “Dies in their teens”. This was not good news. I got to my 20’s and the specialists said “Maybe 30”. I got to 30… and well, you get the idea!! Last month I turned 50. A fantastic achievement as on my bucket list was to have a number 50 or higher on my gravestone. Success!! It’s felt bit touch and go to be fair and 50 really is pushing it.

There are two new strains out at the moment, and Covid is on the Autumn increase (up 22% on last week). In their wisdom, NHS in England decided in its summer review. For the first time since December 2020, when Covid vaccines were first introduced, people under 75 and those with most clinical risk factors, such as diabetes or heart disease, will no longer be eligible for an NHS Covid booster vaccination. In addition, frontline health and social care workers are no longer eligible for a booster dose. This is in accordance with the latest JCVI guidance, which can be found in Chapter 14a of the Green Book.

Wheely Wobbly Life

Masks. These are permitted in my CHC Direct Payment as I use a medical device that generates aerosols. Staff wear their FFP3 masks all day at work. They are also one line of defence against Covid a…

This is one of those pieces of potential new legislation that scares me the most. It’s so emotive that I don’t read much social media on days when they are voting or trying to pass it. It’s too emo…

Within Personal Health Budgets, taken as a Direct Payment, people can be provided with an NHS continuing care (at home) budget that is not limited to practical assistance/care or mental health supp…