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.