One in three people get cancer. More and more survive. But people are unfairly missing out on optimal recovery programmes due to a real lack of awareness! I need your help to spread the word. This has to change – to minimise the risk of preventable long term disability for cancer survivors.
The side-effects of cancer and cancer treatment are real but often it’s only the survivors and their loved ones who know the ongoing difficulties cancer treatment can bring. Difficulties that can be helped, if only people knew!
I’m Lou James and I’ve been working in the field of cancer rehabilitation for over 10 years. As a physiotherapist, I saw first-hand the physical and emotional toll cancer had on people and was utterly shocked at the lack of rehabilitative support they received.
My experience working as a musculoskeletal physiotherapist with top athletes was in stark contrast to my experience working with cancer patients and survivors. Stark!
The unfairness was astounding! The disease, the harsh treatment side-effects and the gaping hole in the quality of care patents received were the driving factors in my commitment to oncology rehabilitation.
Ten years later, with optimal recovery programmes including PINC and STEEL, and Next Steps Cancer Rehabilitation programmes flourishing – there’s still more to be done. This is where you can help.
The biggest challenge is trying to reduce the enormous discrepancy between the provisions of medical rehabilitation services for general physical impairments compared with people affected by cancer.
Hundreds of millions of dollars are spent on drugs to help prevent and treat cancer. The number of people living longer and surviving cancer is growing, however these people may be living with long-term side effects of the disease and treatment (both physical and emotional), which make them feel they haven’t ‘beaten’ cancer at all.
Side effects may be visible during or very soon after treatment, or they may take months and years to be seen. And many of these side effects can significantly affect quality of life.
The number of cancer survivors world-wide is estimated to be approximately 25 million. Current research indicates that only 5% of cancer patients and survivors are being referred to rehabilitation!
The Lack of Awareness
No hospital sends a stroke patient or joint replacement patient home without a detailed plan to help them regain as much of their normal functioning as possible. They are routinely referred for rehabilitation. Yet cancer patients are routinely released with little or no guidance on how to deal with the impairments that may linger after their treatment is done!
Some of the difficulties in getting support from others in the medical fraternity, hospital boards and other cancer charities stem from the fact that ‘rehabilitation’ has never been a part of the ‘traditional patient pathway’ for cancer patients.
It’s easy to underestimate the long-term consequences of cancer and its treatment. The primary focus of oncology medical professionals is to eliminate or control disease by suppressing cancer cell growth (chemo, radiation) or directly removing the tumour (surgery).
These treatments are increasingly successful but they also damage ‘normal’ tissue. While oncology specialists seek the best possible outcomes, i.e. the absence of any residual cancer – this does not mean genuine, meaningful recovery is complete.
Our healthcare system does not have the means to effectively assess post treatment functional impairment – and there is a real lack of awareness about rehabilitation services. And consequently, patients and their family members remain equally in the dark.
The current low profile of long-term consequences of cancer and its treatment means affected people are reluctant to report their ongoing issues, particularly when they feel so grateful to be free of cancer. Revealing the scale of the problem allows people experiencing these issues to understand they are not alone and I hope it will encourage them to seek information and support.
The Lack of Understanding
Over the past 10 years I have spent countless hours speaking in front of different medical, charitable and public groups to raise the awareness of cancer rehabilitation and to advocate for the needs of people affected by cancer.
The more I speak, the more I see change in individuals’ understanding about the benefits of specialised cancer rehabilitation. But we need more voices in the mix – we need yours!
Unfortunately even in our advocacy role to elicit change and reduce barriers for cancer patients, oncology physiotherapists regularly come across roadblocks. This mainly occurs because of historical divisions between public health care versus private and community healthcare which have been traditionally treated as ‘lesser’ and sometimes as ‘counterproductive’.
Cancer is a very emotive topic. There are many alternative therapies that the medical profession will rightly not endorse because they are not supported by sound evidence or research. Oncology physiotherapy rehabilitation is not one of those!
Physiotherapists follow the medical model and use evidence based best practice. The oncology physiotherapy focus is on supporting the whole patient, not just addressing their cancer.
Physiotherapy rehabilitation services can help patients increase their strength, range of motion, functional status, physical activity levels, manage their fatigue and pain and educate them how to maximize their own recovery.
Surely, this has to be a right of choice for patients? It’s inhumane to leave people who have experienced cancer not even knowing about services that offer meaningful help!
The Impact of Disconnected Medical Practices
One thing cancer patients often experience is disconnected medical support. Usually the process of diagnosis alone, shuffles them through multiple medical professionals (and a whirlwind of information). Surgical approaches are often handled by different teams to radiation and / or chemotherapy treatments.
While every effort is made to share expertise – the immediate goal is eradicating cancer. GPs may well be in the loop, but they are not necessarily cancer experts. So at what stage does a patient receive dedicated rehabilitation advice? Sadly, it’s usually never.
I regularly get phone calls and emails from patients saying:
“Why didn’t my doctor tell me about this service?”
“I wish I had started seeing a physiotherapist earlier, if only I had known…”
Our trained PINC and STEEL cancer rehabilitation physiotherapy network has the skills and experience to potentially help hundreds more patients – preventing unnecessary disability! We have the capacity, ready and waiting - we just need more people to know about it.
Understanding the Role of an Oncology Rehabilitation Physiotherapist
Cancer is not one disease, there are hundreds of different types of cancer and every patient is affected in different ways. The role of an oncology rehabilitation physiotherapist is to prescribe individualised rehabilitation dependent on the type of cancer, age, fitness level, stage of recovery, type of cancer treatment and the side effects.
Many cancer patients experience pain, fear, debilitating fatigue and loss of body confidence as well as reduction in their range of motion, muscle strength and stamina. Even intimate side effects such as incontinence can many times be eased through physical therapy – if only people knew.
Oncology or cancer rehabilitation physiotherapists are experts in restoring movement and function to people affected by cancer. However, it doesn't stop there. There is also strong evidence supporting rehabilitation and exercise not only help people physically but also emotionally and socially.
Opportunities to screen for and treat impairments in cancer patients begin shortly after diagnosis and continue even years after the completion of cancer treatment.
Our care continuum includes prehabilitation (interventions designed to increase function prior to surgery or treatment), rehabilitation during acute cancer care, rehabilitation after acute cancer care and rehabilitation of patients with cancer as a chronic condition.
Ongoing education throughout cancer treatment is vital to heighten the patient’s awareness of the potential late effects from treatment and to promote a proactive approach to their diagnosis and treatment. In addition, physiotherapists work to reinforce health-promoting behaviours such as exercise, weight control and physical activity.
The World health Organization (WHO) defines health as “not merely the absence of disease, but a state of complete physical, mental and social well-being”. Our role is to support cancer recovery and actively facilitate rehabilitation and physical activity programs - crucial for the health and well-being of cancer sufferers.
How You Can Help
Over the past decade, there has been a compelling and growing body of research, showing that rehabilitation should be part of the clinical pathway for cancer patients. Our PINC & STEEL physiotherapy network now extends throughout Australasia and is now starting to infiltrate into the UK, Ireland and beyond!
Together our pioneering oncology rehabilitation physiotherapists are helping more and more patients but there is still an enormous discrepancy in the amount of people suffering from side effects of cancer treatment and those being referred to rehabilitation.
I need you to spread the word.
I need you to ask your loved ones who’ve experienced cancer if they are getting the rehabilitation they need… in fact, if they are getting any rehabilitation support at all! If they are not – I want you to tell them about us.
Secondly, I need you to share this article. The more people who understand that help is available, the more we can help. Now’s the time. Please spread the word.
Written by Lou James Founder of the PINC and STEEL and Next Steps Cancer Rehabilitation programmes, AMP scholarship Ambassador. To find out more, visit http://www.survivetothrive.co.nz