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Dealing with the impact of treatment: a spotlight on cancer rehabilitation in London

25th October 2019

As part of breast cancer awareness month, Dr Karen Robb, Macmillan Rehabilitation Clinical Lead, discusses the importance of physiotherapy as part of the wider rehabilitation of people living with and beyond cancer. The recently published Integrated Care System Guidance for Cancer Rehabilitation, produced by the Transforming Cancer Services Team (TCST), and fully funded by Macmillan Cancer Support, will formally launch on 30 October at the Chartered Society of Physiotherapy.

Breast cancer is the most common cancer in the UK and there are approximately 55,000 people living with this type of cancer in London. Our vision at TCST is for all people diagnosed with cancer to have access to excellent rehabilitation services, wherever they live in the capital.

This guidance has been three years in the making and has involved the commitment and energy of a wide range of service users, carers, healthcare professionals, system leaders, commissioners and others. I’m very excited to ‘officially’ launch it at the end of the month, surrounded by friends and colleagues who support and provide great rehabilitation services across specialties such as physiotherapy, occupational therapy, speech and language therapy, dietetics, clinical psychology, nursing and physical activity programmes. All these professionals, and more, play a vital role in helping patients to manage the consequences of cancer and its treatment, optimising quality of life.

Looking specifically at breast cancer, treatment may include surgery, radiotherapy, chemotherapy and hormone therapies. As professionals, we know that cancer impacts on people in many ways including physically, emotionally, spiritually and financially. Luckily, there is lots that can be done to help people cope with the consequences of cancer treatment and improve their quality of life, but we know that people do not always get the care that they need in a timely manner or close to their homes.

When someone undergoes surgery as part of their breast cancer treatment, they may develop some reduced mobility in the shoulder and upper body after their operation. If they go on to have chemotherapy, radiotherapy and/or hormone therapy then they may also experience other symptoms such as fatigue, loss of physical fitness, and joint pain. Physiotherapists provide a detailed assessment and treatment plan which may include scar mobilisation, exercises for mobilising and strengthening as well as general supportive care. This holistic approach focuses on goal setting and what matters to the individual. Referrals may also be made to other professionals such as lymphoedema specialists or community exercise programmes.

Over the years, in my practice with patients, I have seen many people benefit greatly from cancer rehabilitation, particularly when it is introduced early on and made readily available throughout all cancer treatment. Prehabilitation is now gaining increasing attention and for those working in this area, it’s vital that we can better understand the importance of working with people ahead of treatment to ‘build on empowerment, physical and psychological resilience and long-term health’ .

In 2016, TCST produced a scoping report to determine the key challenges to delivering better cancer rehabilitation in London. The report identified a need for comprehensive guidance to show what good cancer rehabilitation looks like, and how it should be commissioned. We knew there were many challenges to overcome including the lack of profile and awareness of cancer rehabilitation, the variation in access to services and the specialist workforce, and the lack of good quality data to inform service planning and transformation.

As part of the development of the Integrated Care System Guidance for Cancer Rehabilitation, we mapped out  adult cancer rehabilitation services in London and West Essex. As part of this process, we uncovered some real gold standard practice going on; teams across London that have gone above and beyond to ensure that patients living with cancer are receiving great rehabilitation services, examples of this best practice can be found in the guidance document.

However, the mapping work also revealed great variance in services for tumour types; some areas in which services are only available for patients on certain points on the pathway, as well as significant gaps in service provision; particularly in the community. There are a few reasons for this, most predominately a lack of funding and resource, but also poor understanding of the breadth and scope of cancer rehabilitation coupled with challenges in evidencing the economic benefits of good rehabilitation. This means that commissioners don’t always have the information they need to properly commission such services. As a result, people may spend longer in hospital, be admitted to hospital unnecessarily and/or require more health and social care interventions to manage their condition. This needs to change.

Looking ahead, we should continue to develop cancer rehabilitation services throughout London. This is in complete congruence with the commitment in the NHS England Long Term Plan, to deliver personalised care and for the aspiration to support people living with and beyond cancer. This also includes enhanced assessment of need with care plans, parity of physical and mental health, and a commitment to better supportive self-management. As the number of people diagnosed with and living with cancer continues to grow, there will be an ongoing and pressing need for accessible, evidence-based, personalised rehabilitation services.

In the words of David Jillings, Trustee for the Pelvic Radiation Disease Association, ‘We owe it to patients to give them the best possible chance of dealing with the impacts of their treatments, and of enjoying the best possible quality of life afterwards’.

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