THIS IS NOT A FUNDRAISER AND ANY MONEY DONATED GOES TO CHANGE.ORG - Please donate if you wish however be aware where the donations are going! Thank you so much! 

My lovely friend has very kindly set up a go fund me page which I will add here as there has been some confusion regarding donations! Thank you for taking the time to read, sign, share and donate! Everything counts and means so much to me! 

LINK:

https://gofund.me/f24573bb

I am advocating for a reform of the NHS Individual Funding Request (IFR) process for people living with critical illnesses.

The current IFR process means that people requiring certain treatments not routinely funded on the NHS must apply for funding via their consultant or medical team. This can lead to unnecessary delays in patient care, increased risk of disease progression, and emotional fatigue caused by uncertainty. These delays have the potential to cause further deterioration of patients, potentially costing the NHS more money than the initial recommended care. For those living with critical diseases, the news of requiring further treatment is daunting, but to discover the NHS may not fund the required care is disheartening and frustrating.

The IFR system was created to manage access to exceptional treatments, but for patients like myself with a critical illness, it feels like a barrier rather than a lifeline. While some treatments may require careful scrutiny, it becomes difficult to justify when recommended care—proven effective and accessible to others—is denied due to rigid criteria and bureaucracy. When clinicians advocate for treatment based upon medical need, the system should support that judgment, not stand in the way.

I believe healthcare should be delivered based on clinical need. A person living with a critical illness has already faced many challenges—physically, mentally, and emotionally. No one living with a critical illness should have to fight for their care.

When effective, recommended, affordable, and available treatment exists, why is the NHS gambling with unnecessary delays?

I petition that the NHS reconsiders its approach to funding for people living with critical illnesses. Patients with critical illnesses should not be subject to excessive delays because of unadaptable processes —treatment should be available and accessible. The current system not only compromises patient care but undermines the principles of what the NHS claims it stands for.

 

Background: 

In early 2023 I was diagnosed with a Central neurocytoma - a rare intercranial brain tumour.  I underwent surgery in May that year which successfully removed around 80% of the tumour. I made a remarkable recovery and returned to my job as a Paramedic less than 3 months later determined to regain a sense of normalcy. 

Unfortunately during a routine scan in March 2025 it was discovered that the residual tumour is showing signs of regrowth - the next appropriate step would to receive stereotactic surgery (Gamma knife radiotherapy). My scans were sent to the National centre for Stereotactic surgery in the UK, they confirmed my tumour would be suitable for treatment however advised they do not have funding from NHS England for my specific tumour type to deliver this treatment. In simple terms, my tumour type is not written on the list to receive this specialised treatment. 

As someone who works on the frontline of the NHS I see daily the equal care provided to all. I am shocked and devastated by this decision. The alternative treatment, conventional radiotherapy, presents a greater risk of side effects and long - term complications. It was not the first-choice recommendation from my consultant. Why when others have access to treatments, is it being refused based upon uncompromising guidelines? 

My consultant has now submitted an Individual Funding Request (IFR) to NHS England on my behalf. I have been informed that the review process could take up to 40 working days - a significant delay that could result in tumour progression and ultimately render Gamma Knife no longer viable.

Why are decisions about treatment access based on rigid condition lists, rather than considering individual patient factors such as age, comorbidities, and professional input from a multidisciplinary team? 

I believe it is both unfair and inefficient to deny patients the most appropriate care due to funding limitations, especially when that care could ultimately be more cost-effective for the NHS and offer better outcomes. 

I am hoping to advocate for a review of this process for people living with critical illnesses. Whilst I am a minority, the system in my case is failing me. How many others have had to risk their health for extended wait times due to inflexible protocols?