My Story: Improving cancer survivorship — need for a personalised approach to care

There is an increasing number of people living with and beyond cancer. Peter Goulding addresses what’s needed to improve survivorship.

Macmillan Cancer UK published a useful document that shows in the past 40 years or so, better screening and advances in treatments mean we have seen a huge change in what cancer diagnosis means; improved cancer survivorship. It is not always life threatening but certainly life changing.

Ageing and growing populations and more effective cancer treatments mean we have an increasing number of people living with and beyond cancer.

Long term survivorship will grow in the UK from 2.5m living with cancer to at least 4m by 2030. With an ageing population peoples’ needs are more complex and demanding.

So not only should there be better early diagnosis, improved effective treatments but also a health service that is able to meet the increasing complex demands of cancer survivorship in the coming years.

What is needed is a more personalised approach that really cares and supports people so they are able to live as full a life as possible.

The experts use the term ‘Living With and Beyond Cancer’ [LWBC]. I thought that was an odd phase to use initially but the more you think about it, the more you understand the significance. Being diagnosed and treated for cancer, whatever the form, does change your life and that of your family in some way. It may be a small adjustment to a new paradigm or your world is turned upside down and sideways.

So whilst all the news items and articles focus on the ‘war on cancer’ and ‘let’s beat cancer together’; the reality is that cancer exists and we should all expect to be able to live our lives to the fullest, whether we still have cancer or we have reached a stage of being beyond the disease.

The cancer patient and people close to them have to live with the consequences of cancer or the treatment and the health and social care community need to respond to this challenge.

The Independent Cancer Taskforce’s report ‘Achieving World Class Cancer Outcomes’ a Strategy for England 2015–2020 includes an important element — ‘Living With and Beyond Cancer’. We know what good looks like. Recommendation 65: NHS England should accelerate the commissioning of services for patients living with and beyond cancer.

The experts call for every person with cancer to have access to the elements of the Recovery Package by 2020. This should include for example:

· A holistic needs assessment

· Individualised care and support, agreed by the patient and shared with the GP and local healthcare professionals

· Information on side effects and how best to manage these, not just initially but in years to come

· Markers of re-occurrence / secondary cancer and what to do
· Key contact point for rapid re-entry for treatment

· A cancer care review

· A treatment summary

· Access to a patient education and support event to help the patient, such as a Health and Wellbeing Clinic

· Rehabilitation and financial support services support as necessary.

If you are a patient or care for someone with cancer have you received a recovery package? If not insist the health and social care professionals provide this service in your community to you and others.

If you are a health and social care professional, are you doing your part — if not why not? It is not rocket science, it may be hard, it may be difficult with everything else that needs to be done.

Are you an employer, what are you doing to help support people with cancer? We all have a role and helping people to stay in work and make those adjustments as necessary can really help.

So let’s all do something today that will change someone’s life who is living with cancer. Remember we cannot reach for the stars unless we all take a step forward.


Peter Goulding is a member of the Living With and Beyond Cancer Board, part of a multi-agency board transforming cancer services in London.
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