by Dr Catherine Zollman
This was a day organised by an independent organisation to look at some examples of good practice in survivorship from across the UK’s NHS services. There was representation from the voluntary sector (Breast Cancer Care and Macmillan), from 2 surgeons (breast and prostate), a psychologist, an Allied Health Professional (physio) and from a Patient Advocacy Group (Pelvic Radiation Disease Association) all talking about how to implement and deliver a coherent, patient-centred, wellbeing focussed survivorship strategy.
One of the emphases was on stopping the irrational, costly and ineffective routine hospital-based follow-up of low risk patients (people who have completed treatment, who don’t have significant side effects, and who have a good prognosis). The opportunities (more consultant/CNS time for patients who need more complex intervention) and the threats (oncology/surgical clinics filled with purely “difficult” complex patients or patients with progressive disease – potential for burnout and overload highlighted; loss of payments to hospitals for routine outpatient appointments would be a disincentive for Trusts to sign up for more remote surveillance) were discussed.
Another topic was the unmet needs of people who have completed cancer treatment and are ostensibly “cured” but suffer long term effects of treatment which may have a massive negative impact on the quality of their lives. The very patchy and inequitable availability of services to help them was highlighted
Communication issues were discussed and the progress of Macmillan’s roll out of the electronic Holistic Needs Assessment (eHNA) as a tool to ensure up-to-date relevant holistic information is available to all stakeholders (including patient, GP and Cancer Nurse Specialist) was presented. There are still many technical and systemic barriers to making this a useful part of the Recovery Package, but a lot of progress has been made in trying to iron this out.
The role of the voluntary sector – e.g Breast Cancer Care Moving Forwards Days and Macmillan Late Effects and 1-1 support pilots – was discussed as necessary sometimes to pump-prime systemic change towards a Survivorship Culture – Cancer as an LTC, and to fill unmet needs. The pros and cons of relying on the voluntary sector were discussed.
There was very little discussion about the role of integrative oncology and complementary therapies in cancer survivorship other than the role of promoting psychological wellbeing and keeping a focus on “being able to live a life worth living” as a necessary goal of all cancer treatments. Mindfulness, healthy eating and exercise as a strategy for managing side effects, improving survival and increasing quality of life were all mentioned. Some survivorship services included some aromatherapy or massage but this seemed to be offered as more as a “feel good” experience, rather than as an integrated part of a person’s recovery and rehabilitation.
Many teams within the NHS are making real efforts, even at a time of massive financial constraints, to reshape cancer services in ways which help people become more involved in their own care, and which address their unmet needs after cancer diagnosis and treatment, recognising the connections between mind, body and emotions, and that needs may not be purely physical. There is still a long way to go to create a culture of integrative care where people have access to a full range of health interventions that may be of benefit to them.