Isabel White, clinical research fellow in psychosexual practice at the Royal Marsden Hospital NHS Foundation Trust, London, will find out if she has won the Macmillan Cancer Nursing Award at a ceremony in the Savoy Hotel on May 1.
Isabel White. Picture credit: Nathan Clarke
She developed the psychosexual therapy service to address the sexual rehabilitation and support needs of individuals and couples experiencing the sexual consequences of cancer and its treatment, including those affected by breast, gynaecological, urological and colorectal cancer. The service supports men and women experiencing both organic and psychogenic sexual and relationship difficulties.
Isabel assesses each person’s unique adjustment and rehabilitation needs to enable her to work with them, and their partner, through a series of sessions to develop coping strategies, introduce behavioural and/or biomedical strategies to overcome sexual difficulties, or to move towards adjustment to a permanent change in sexual expression.
These interventions range from advice on sexual positions, use of lubricants and dilators following pelvic radiotherapy in women, medication or vacuum devices for men experiencing erectile dysfunction to behavioural or CBT interventions for desire, orgasm or sexual avoidance difficulties.
The consequences of treatment after cancer are currently experienced by an estimated 400,000 survivors in the UK. These effects are often hard to identify and are insufficiently understood by patients, the public and healthcare professionals.
According to a Macmillan survey in 2006, 26% of people with cancer said they experienced difficulties in their relationship with their partner as a result of their cancer diagnosis. It also found that 43% of people living with cancer said that their sex life had suffered.
Isabel’s doctoral research (White et al, 2013) found that women felt embarrassed to talk about sexual concerns during or after their cancer treatment, with many feeling it was not important enough to discuss with busy clinicians.
In response to patients’ concerns that the sexual impact of their cancer was not being addressed, the Royal Marsden appointed Isabel in 2010.
She set about improving patient’s sexual confidence by establishing a clinic and developing new management pathways for people with sexual rehabilitation needs. She also supports colleagues to build confidence and skills in talking to patients about sexual concerns, training them to conduct systematic sexual assessment and make appropriate onward referrals to services within and beyond the cancer centre.
In the first two years (2010-2012) the service set up by Isabel saw 82 new patients, mostly from the breast and gynaecological units, followed by urology and lower GI services. In 2013/14, there were 44 new patients – breast, gynaecology, urology and haemato-oncology.
In the current year – 2014-March 2015 – the service has seen 56 new referrals, mostly from the urology unit, followed by gynaecology, breast and lower GI units. It has delivered 187 hours of psychosexual therapy to individuals and couples, compared to 60 hours in the first year of the service.
‘The aim is to build a three-tier service,’ Isabel explains. ‘All people affected by cancer deserve support from health professionals to improve self-care and management of sexual consequences, overt permission to share their concerns, and support in the belief that the assessment and management of treatment-induced sexual difficulties are a legitimate part of their cancer care.
‘At the second level, advanced practice by clinical nurse specialists, nurse consultants, AHPs and medical specialists offers specialist assessment, biomedical interventions such as HRT, medication for erectile dysfunction and limited information on sexual behaviour adjustments.
‘I usually see people experiencing more complex or enduring sexual difficulties that have not responded to biomedical strategies alone, including those with multiple comorbidities, couple difficulties and people with emotional vulnerability before their cancer diagnosis.’
Royal Marsden chief nurse Shelley Dolan says Isabel’s achievements in pushing the boundaries and ensuring that people with treatment-induced sexual difficulties have access to expert psychosexual therapy are renowned internationally.
‘Isabel’s tireless work in lobbying and promoting this area of care, while managing her own clinical practice, means that she thoroughly deserves this recognition,’ says Dr Dolan.
‘Her interventions in terms of care, education, research and publications have made a real impact on the science and care of people with cancer.’
The Nurse Awards judges commended Isabel for addressing ‘a tough area for people to talk about and making a very personal impact on people’s lives’.
Chief nursing officer for Wales Jean White adds: ‘Isabel’s work brings much to an area that is not well explored and that isn’t comfortable for people to talk about. There is a lot of potential in her research findings.’
Royal College of Nursing chair of nursing research Daniel Kelly agrees. He nominated the ‘highly respected clinical academic nurse researcher’ for ‘spearheading the need for more support for a previously neglected clinical problem’.
‘One of the most valuable aspects of Isabel’s service is that she allows people to talk about private and sometimes highly embarrassing issues in a safe and professional manner,’ says Professor Kelly, who is also director of research and innovation at Cardiff University.
‘She has used her enthusiasm, energy and drive to shape the need for this initiative. The numbers being referred to the service are rising, indicating that it is highly regarded by patients and colleagues.’
He adds that she has ensured the cancer survivorship agenda considers what some might say are the taboo subjects of sexuality, relationships and partner support.