Proton Therapy -The Bigger Picture.

Since 2008 the NHS have funded treatment for specific tumours to be treated in the USA with Proton therapy. As a nurse working in paediatric oncology we are regularly asked by patients about proton therapy, and whether it may be of use in their cancer. Currently if a patients consultant feels they may benefit from this treatment they can submit a request to a clinical panel, the panel then decide if the case is suitable for proton beam therapy and, if so, confirm that a referral may be made to the USA.

Proton therapy is used to target cancer cells In a similar way to conventional radiotherapy but uses proton beams instead of X-rays. It has been available in the USA since 1991, and since then research has explored the benefits of using proton therapy to treat various kinds of cancers.

Protons are the positively charged parts of an atom. A natural phenomenon in the way that protons move and release their energy is what makes protons optimal for use in radiation treatment for many kinds of cancer. The way they move and release energy is called the Bragg peak. The Bragg peak is the burst of energy released by the protons as they reach the end of their path in the body. The Bragg peak can be placed at any depth within the tissue, according to the depth of the tumour. This makes protons ideal for treating tumours as the energy can be manipulated to the site of the tumour thus minimising damage to surrounding tissue. Conventional radiotherapy uses photons which travel through the tumour, this means greater risk of damage to surrounding healthy tissue. Protons are of particular benefit when a tumour is near or embedded in a part of the body containing important structures. Currently the NHS fund for the treatment of head and neck cancers as protons can potentially minimise damage to the developing brain of a child.

There are 2 centres used by the NHS to deliver this specialist treatment for children, the University of Florida Proton Therapy Institute and Procure, a private centre in Oaklahoma.

I was keen to find out more about all aspects of the patient journey and visited the two centres at the start of 2014.

Families travelling abroad for their treatment are often very anxious, some may never have been abroad before. The thought of travelling with a sick child is daunting. There are lots of things for families to consider such as, who will travel with the child, will they bring the siblings, where will they live and how will they support themselves. Having supported several families in planning their trip for treatment I had a strong desire to see what it was like for them, the practical as well as the medical side of it all.

My aims were to visit both centres, meet the staff, and see first hand the supports available for families. To meet the UK families, hear their stories and find out what was and wasn’t helpful for them.

I planned to spend 2 weeks in Florida, the bigger of the two centres, seeing the majority of the UK patients, and a week in Oklahoma at procure.

The UFPTI is located in Jacksonville, Florida. Opened in 2006 it has treated more than 4000 patients. The centre has treated more paediatric patients than any other centre in the USA. This gives them unparalleled experience in treating childrens tumours. They treat children from all over America as well as international patients. During my visit I met and shadowed members of the paediatric team. It was incredibly interesting to see how it all comes together so families experience seamless care. I visited the childrens clinic and hospital and spent time with the staff there. I looked at the accommodation options for families travelling from the UK, and met with families. It was very interesting to hear their stories and find out what would have helped or reassured them prior to travelling.

The Procure centre in Oaklahoma was the smaller of the two facilities. Opened in 2009, they have treated more than 1700 patients. Again I was fortunate to be able to spend time with the various staff members involved in caring for families from the UK. I visited the childrens clinic and hospital and was invited along to some of the many family activities staff organised.

Both centres go to huge effort to make the experience as easy as possible for the families. Every aspect of the journey and treatment is supported by enthusiastic and caring staff. The team work in both centres was very impressive.

The centres both offered social events and opportunities for families to have some fun times between treatment. Both centres place huge importance on social activities and the families really seem to embrace these events and opportunities.

I think there are learning opportunities in looking at what improves patient experience and journey, there are many aspects of what I’ve seen and experienced that could be transferable to my practice and how we do things in my centre.  I look forward to taking my knowledge around the country and presenting my report to nursing colleagues. I think the information I now have will be hugely beneficial to families travelling in the future and to medical colleagues assisting families to prepare for their trip.