Hey, my beautiful Pelican friends,
Summer has gone and we are heading into colder nights, horror films, hot drinks, and autumn clothes! I still think summer is the best time of the year, but I do love those warm autumn nights. Hope you have been well?
Rosa Hui Award & Mayor of Swindon
I really wanted to talk to you about something I am working on now as I think it’s such an important matter and changes need to be made. Last year I was nominated for the MTM black and Asian awards. The award I was up for was ‘Rosa Hui Empowering Woman’. Every year the MTM host a huge award ceremony in Bristol, everyone nominated alongside their family and friends all join for one amazing night of entertainment and the winners receiving their awards. As always, covid cancelled this plan and the ceremony was pushed back to this year July 2021. I did not attend this years as I am still wary about being in a huge building with lots of different people some unvaccinated and some vaccinated. I got an email to inform me I had won the Rosa Hui award! I was so grateful and surprised at this! What an honour. I was to collect my award a few weeks later via the Mayor of Swindon.
On my meet with the Mayor, I was not surprised how lovely he was as I had heard nothing but good things about him from others. He was so welcoming, warm, and very talkative. He also had a great sense of humour. When talking about the things I did to have won the award I brought up the fact I had wrote to Sajid Javid the secretary of health and social care. I knew I was not going to receive a reply as you know what some politicians do, read things, and push it to the side as if it is nothing. If I got no reply, I going to take my case to the Queen of England. I can tell you now I am a big believer in everything happens for a reason because the mayor then asked me to put a case study together so he can pitch it to the right people and arrange a meeting with other important politicians to fight this case. I am honestly so grateful that he has opened potentially a new door for the IBD community with even being willing to help.
Some of the things in my case study include changes like:
We as IBD sufferers have got this disease for life. There is as of yet no cure and we must take medication to try and have a better quality of life. This of course means if somebody cannot afford their medication at times, they risk relapsing or being seriously unwell. We need medication to live, and we shouldn’t have to pay for our lives.
Access to a specialist councillor
I think mental health plays a big part in IBD patients. If you have been misdiagnosed and must adjust to a sudden life change, if you have constant flares and cannot live your life. The number of surgeries we have, the anxiety it causes. We should be given access to free therapists who have trained in trauma to help us come to terms with everything and be a listening ear. Somebody who can offer productive good advice with the understanding it is so much more than a chronic illness. It is bad enough at times our close family and friends fail to understand us, we need somebody who is trained to understand in ways other therapists and people cannot.
GPS to have extra training
Gps are where we all start off when we get our symptoms of IBD without having yet a diagnosis. IBD is the most likely outcome the GP will put it down to. GPs need extra training to prevent further misdiagnosis and possibly worst-case scenarios like death. Bethan a beautiful 21-year-old from Wales was misdiagnosed and then was diagnosed too late, by that time she had sepsis and sadly wasn’t so lucky. My case was very similar, it took 7 years of misdiagnosis and then for me to collapse go blind and have sepsis and kidney failure be rushed to hospital for emergency surgery to get a diagnosis. This needs to change, there are thousands of people still being misdiagnosed where GPs lack the knowledge to identify potential symptoms.
These are just a few of the things in my case study I am ready to pitch for change in. I am very very passionate about this and will not stop, we should never take no for an answer after all. I will be taking this as far as I can until changes are made and our case is acknowledged. I have the help of CCUK which is amazing and will be putting together case studies of 5 other IBD suffers to go alongside all my evidence, and facts. I know it’s just a film but if Elle Woods from Legally Blonde can do the impossible so can I.
I will keep you updated on the process I make on this journey! Wish me luck!
Until October my pretties
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