Beyond the Diagnosis - 30 years on: Why post-cancer support still feels like a postcode lottery.

Written by Maureen Elliott, Founder & CEO of Live Well with Cancer

I remember clearly when the Calman–Hine Report was published in 1995. I was working in cancer care at the time and, like many nurses, I felt genuinely hopeful. As an ever-optimistic nurse, I believed we were witnessing the beginning of a transformation in how cancer services would work for patients and families. The report promised a more organised, equitable cancer service across the UK — better coordination, improved standards, and most importantly, care centred around the person living with cancer.

Thirty years on, it is important to acknowledge that real progress has been made.

Cancer treatment today is very different from what it was when I first started nursing. Advances in surgery, radiotherapy and systemic treatments have transformed outcomes for many people. The development of targeted therapies has changed the landscape of cancer care. Conditions that once carried a very limited life expectancy are now often managed for many years.

I sometimes reflect on people I nursed 30 years ago who sadly had very short life expectancies. Today, many patients with the same diagnoses are living far longer — sometimes for decades. This is something the cancer community should rightly be proud of. Scientific progress, research, and clinical innovation have saved and extended countless lives.

The landscape of cancer has changed, and yet this success brings with it a new and growing challenge. More people are now living with and beyond cancer, often managing the long-term physical and emotional consequences of treatment. Survival is no longer the only measure of success. Quality of life matters enormously.

During my career, I had the privilege of working as a Macmillan Complex Case Manager, leading a Living With and Beyond Cancer team in the community. Our work followed the recovery package model and focused on truly personalised care.

Until I founded Live Well with Cancer, it was the best role I had in my professional life.

For seven years, part of our role was supporting people after treatment had ended. We saw first-hand the challenges they faced once the hospital appointments stopped — fear of recurrence, ongoing fatigue, financial pressures, loss of confidence, relationship changes, and the feeling of suddenly being “cut loose” from the system that had supported them through treatment.

Because we worked in the community, we could meet people where they were in their lives, not just in their diagnosis.

We helped individuals rebuild confidence, manage the long-term effects of treatment, reconnect with their communities and begin to live well again. Time and time again, we saw the difference the right support could make. For many people, it was life changing.

Yet, despite the clear impact, the service was never fully adopted by the NHS Trust we operated from. After seven years, it was allowed to disappear.

It was viewed as the “cherry on the cake” — a valuable extra if resources allowed.

In reality, for so many people, it was a lifeline. In my view, this type of support should have been recognised as gold-standard cancer care, not an optional add-on.

That experience, along with lived experience of family members impacted by cancer, was one of the driving forces behind founding the charity Live Well with Cancer.

I had seen too clearly that the period after treatment is when many people feel most alone. Despite the advances in treatment and the improvements in clinical pathways, post-treatment support remains inconsistent across the country. Many people travel miles to access help while others receive none at all.

“Access to support often depends on where you live. In other words, it remains a postcode lottery.”

This is where charities and third sector organisations play such a vital role. Across the country, local charities are quietly filling the gaps that exist within the system. They provide practical support, emotional guidance, peer connections, prehab and rehabilitation activities and safe spaces for people to rebuild their lives after cancer.

These organisations make an enormous difference to people’s quality of life, yet their contribution is not always recognised in the way it should be.

At Live Well with Cancer, we are proud to be one of many local charities supporting people on this journey. Every day we see individuals regain confidence, find community, and begin to move forward after the life-changing experience of cancer.

But charities cannot – and should not – be expected to carry this responsibility alone.

“Thirty years after the Calman–Hine Report, we have transformed how cancer is treated. Now we must give the same attention and commitment to how people are supported after treatment ends.”

Post-cancer support should not be seen as an optional extra. It is an essential part of the cancer pathway. If we truly want people not just to survive cancer but to live well after it, then community support, survivorship services and partnerships with the third sector must be recognised, valued and sustainably supported.

Because surviving cancer is only part of the story. Learning how to live well afterwards is the next chapter — and it is one we must write together.