CRUK RadNet Birmingham

At CRUK RadNet Birmingham, we want to ensure that improving the patient experience is at the centre of all of our research. To achieve this, we will use Patient and Public Involvement and Engagement (PPIE) to ensure that the voice of patients and members of the public are heard at every stage of the research process.

We believe that integrating PPIE into the research process as early as possible is highly important, as it can otherwise feel like there is a long way between experiments done in a laboratory and treating patients in the clinic. PPIE gives patients a chance to influence research by speaking to scientists about their work, and how it relates to the ultimate end goal of improving treatments. This can include influencing the topics studied, how the studies are designed, and how information is communicated to patients and the public.

We plan to get our PPIE group involved in the research and outreach in several ways.

• We will create forums for scientists to pitch their work so we can collaborate to achieve the end goal.
• We will also do community outreach to patients currently going through treatment.

My name is Andrew Steele, and I was diagnosed with Stage 4 Head and Neck Cancer on 22 April 2021.

This diagnosis marked the beginning of a traumatic period for both me and my family. My treatment pathway was intensive and complex, involving a 12-hour surgical procedure followed by 33 sessions of radiotherapy alongside chemotherapy.

While I recovered well from surgery, radiotherapy proved far more challenging. The treatment required the use of a tightly fitted immobilisation mask, which was particularly distressing due to my claustrophobia. The experience was frightening, and I required medication to manage anxiety, especially during the initial stages of treatment.

After the first eight days, the side effects of radiotherapy became increasingly severe. My face became extremely painful to the touch, and my mouth and throat were badly affected. Eating became difficult as painful ulcers developed, leading to bleeding on my tongue and lips.

Chemotherapy continued alongside radiotherapy, further intensifying the physical impact. As my face swelled significantly, the treatment mask became increasingly tight and uncomfortable. This was compounded by a sinus tract infection, which ruptured and bled during treatment preparation.

Prior to surgery, I was fitted with a feeding tube directly into my stomach. As my ability to eat and swallow deteriorated, this tube became a vital lifeline, allowing me to receive medication and nutritional support. It remained in place for eight months and played a crucial role in sustaining me throughout my recovery.

When treatment ended, there was no ceremony or celebration — only the beginning of life after cancer. The long-term effects of radiotherapy have been life-altering, continuing to impact my ability to eat and live normally. Everyday actions such as smiling, laughing, yawning, and speaking have been affected, resulting in ongoing medical needs, including treatment for an underactive thyroid.

These lasting side effects, and their profound impact on my daily life, are why I support the RadNet programme. I hope that through continued research and innovation, future patients will have access to less invasive treatments with fewer life-changing consequences.

My name is Julie Parton. My 11-year-old twin son, Ben, had been unwell for several weeks and had attended urgent care and GP appointments a number of times. When he suddenly collapsed at home, an ambulance was called. The crew were concerned that Ben may have a neurological issue.

On arrival at A&E, no immediate cause was found. However, the ambulance crew remained with us and strongly advocated for further investigation, requesting a CT scan. Several hours later, we were told the devastating news that Ben had a glioblastoma - a rare brain tumour, and would be transferred to Birmingham Children’s Hospital.

At Birmingham Children’s Hospital, Ben underwent surgery to remove the tumour. While waiting for a radiotherapy plan, the tumour sadly returned, and he required a second operation. Ben then went on to endure 32 sessions of radiotherapy and two rounds of chemotherapy.

Despite his incredible strength and bravery, we were later informed that the tumour had spread and Ben was placed on palliative care. Eight months after his diagnosis, Ben passed away at the age of 12.

Just two weeks after Ben’s funeral, his twin brother Jack was diagnosed with leukaemia. Jack underwent three and a half years of intensive treatment. Today, Jack is 18 years old, cancer-free, and doing well.

I am keen to offer support to RadNet to allow research into safe and more effective radiotherapy treatments.

Before sharing my story, it is important to understand the scale of treatment required throughout my cancer journey:

• 11 CT scans
• 13 MRI scans
• 5 X-rays
• 7 operations under general anaesthetic
• 16 operations under local anaesthetic
• 11 biopsy procedures
• 30 days of hyper-fractionated radiotherapy, delivered twice daily
• 5 chemotherapy sessions, given alongside radiotherapy
• Two years of immunotherapy, administered every three weeks
• Sepsis, following extensive treatment
• Four years ago, I was given an estimated two years to live

At the age of 52, I was diagnosed with skin cancer. Having worked for the NHS for most of my life, I believed the treatment would be straightforward — a simple operation followed by a return to enjoying life as normal.

At one point, I was told I might not live to see my 60th birthday.

The journey to reach where I am today is not one I would wish on anyone. It involved years of NHS treatments, long periods of waiting, unanswered questions, and the constant, haunting thought: Why me?

There were endless appointments—pre-operative assessments, blood tests, scans—often before any treatment even began, while knowing the cancer was continuing to grow. Then more waiting. Another week. Watching for the hospital envelope to drop through the letterbox, knowing it would determine the next stage of our lives.

One of the hardest moments was bringing my children together to tell them the devastating news, and being forced to put my affairs in order far earlier than anyone should have to.

The patient journey is not just hospital visits. It consumes your entire life.

After many years of treatment, I was left wondering whether, had the correct treatment been given from the very beginning, the cancer could have been cured and never become life-threatening. At one stage, I was told I was “too young” for radiotherapy. Today, my life expectancy has been drastically reduced as a result.

The physical pain, emotional suffering, loss of income, and loss of normal life have been immense—for both myself and my partner, Alex. She has been beside me every step of the way. Without her support, I truly do not believe I would have survived this journey, emotionally or practically.

This is not only my patient journey, but Alex’s as well.

I want to offer key support to the RadNet programme which will deliver research into safe and more effective radiotherapy treatments. I hope that sharing this experience helps research staff and colleagues better understand what the patient journey truly involves. It is more than words on a page. The photographs tell a shocking and powerful story that words alone cannot fully convey.

This experience has changed my perspective on life completely.

Every day is a good day.