Young woman campaigns to improve NHS services across Shropshire

Over the past three years, I have become incredibly unwell with multiple chronic illnesses which have gradually deteriorated, currently leaving me bed-bound. This really made me realise the lack of suitable services we have locally for others like me. I spent a long time feeling sorry for myself and being angry at the lack of support I was receiving, as well as for everything I had to give up because of my health.

Before becoming unwell, I had a very active lifestyle. I performed from an early age with local performing arts studios and later went on to gather a First Class Degree in Musical Theatre. Alongside this, I had just started my dream career making and designing costumes for theatres and events around the country. My career highlights include making costumes for the 2022 Commonwealth Games opening and closing ceremonies, as well as designing costumes for the West End soundtrack debut of ‘Rosie: The Musical’ at Theatre Royal Drury Lane in October 2024. I also have a beautiful cockapoo whom I loved to explore various aspects of the beautiful local countryside with.

Giving all of this up played a massive toll on my mental health leading to a moment of crisis where I simply did not want to carry on. I was regularly being dismissed from local services as there is little knowledge and understanding of my conditions, especially within Shropshire, Telford and Wrekin. Being bed-bound made everything so much harder as I felt like I was just being left to rot, I had no consistent care from anyone as no one seemed to know what to do with me which caused worry that they might end up making me worse. Doctors were either telling me that I needed further testing and treatments but as we do not have them locally, I could not have them, while others would tell me it is all in my head and that there is nothing wrong with me despite my level of disability. One doctor even told me that when I start to feel unwell, I should remember that there are children starving in Africa and how other people have it worse.

After a while, something clicked inside of me, and I decided to use this moment of weakness and decided to turn it into a strength. I wanted to improve local services for everyone else going through similar experiences so that no one else needs to endure what I have. This was something within my control and could really help other people.

I created a Facebook group entitled ‘STW Chronic Illness Collective’ to gather a group of voices to campaign alongside me as this holds more weight than just my own voice. As it currently stands, we already have a large group of people with comparable stories when it comes to accessing local care. The group has been created to advocate for improved NHS services within Shropshire, Telford & Wrekin for those living with complex chronic illnesses and neurodivergence. We are particularly focusing on the following conditions:

• Postural Tachycardia Syndrome (PoTS)

• Ehlers Danlos Syndrome (EDS)

• Mast Cell Activation Syndrome (MCAS)

• Gastroparesis

• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

• Long Covid

• Functional Neurological Disorder (FND)

• Fibromyalgia

• Endometriosis

• Adenomyosis

• Polycystic Ovary Syndrome (PCOS)

• Autism

• ADHD

Our aim is to work constructively with local NHS organisations to improve access, coordination and understanding of these conditions. We are advocating to address gaps in local NHS provision and promote meaningful, system-wide improvements that reduce delays, barriers, and unnecessary distress. This is not about criticising the NHS. It is about strengthening local services and ensuring patients receive the standard of care they deserve.

The first step is gathering data to back up the campaign, highlighting the gaps in local services and what our main priorities are. To do this I set up an anonymous Google Form survey asking for local experiences. If you are living with any of the above conditions, we would really appreciate hearing your journey with accessing local services.

The survey is anonymous and takes around 10 minutes to complete. If you live with multiple conditions, please either pick the most relevant, or submit the survey separately for each condition. You can find the survey by pressing the following link forms.gle/kdWsxFEwk6F1dLdJ7