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Sexual healing after cancer

A pioneering Royal Marsden therapy service supports individuals and couples experiencing the sexual consequences of cancer and its treatment. Founder Isabel White was runner-up in the cancer nursing category of the 2015 Nursing Standard awards.

A nurse has developed a sexual rehabilitation service for cancer survivors and their partners, and trains colleagues to ensure that patients are fully supported during and after treatment.

Isabel White, pictured, clinical research fellow in psychosexual practice at the Royal Marsden Hospital NHS Foundation Trust in London, developed the therapy service to support men, women and couples experiencing the sexual consequences of cancer and its treatment including those affected by breast, gynaecological, urological and colorectal cancers.

Ms White trained as a sex therapist in cancer care after working as a junior sister on the urological unit at the Royal Marsden in the 1980s. I saw how medical and nursing colleagues struggled to find the right words, or avoided telling men in detail the likely impact surgery would have on their sex lives, she recalls.

Picture credit: Nathan Clarke

I remember how inadequate

A nurse has developed a sexual rehabilitation service for cancer survivors and their partners, and trains colleagues to ensure that patients are fully supported during and after treatment.

Isabel White, pictured, clinical research fellow in psychosexual practice at the Royal Marsden Hospital NHS Foundation Trust in London, developed the therapy service to support men, women and couples experiencing the sexual consequences of cancer and its treatment including those affected by breast, gynaecological, urological and colorectal cancers.

Ms White trained as a sex therapist in cancer care after working as a junior sister on the urological unit at the Royal Marsden in the 1980s. ‘I saw how medical and nursing colleagues struggled to find the right words, or avoided telling men in detail the likely impact surgery would have on their sex lives,’ she recalls.

Picture credit: Nathan Clarke

‘I remember how inadequate I felt when patients got angry, or shrugged and said “Well I guess this is just the price I will have to pay for hopefully being cured of my cancer”.

‘Throughout my career I have tried to combine clinical, education and research elements in specialist nursing roles; I was determined to become a clinical academic. I am now able to offer better evidence-based clinical care and support for what is still a neglected aspect of aftercare and survivorship in oncology.’

She assesses each person’s ‘unique adjustment and rehabilitation needs’, providing sessions to develop coping strategies, introduce behavioural and/or biomedical methods of overcoming sexual concerns and difficulties, or adjusting to a permanent change in sexual expression.

Interventions range from advice on sexual positions and use of lubricants and dilators following pelvic radiotherapy in women, to medication or vacuum devices for men experiencing erectile dysfunction, and behavioural or cognitive behavioural therapy interventions for desire, orgasm or sexual avoidance difficulties.

The consequences of cancer treatment are experienced by an estimated 400,000 survivors in the UK. They are often hard to identify and, says Ms White, are often insufficiently understood by patients, public and healthcare professionals.

‘Survivors don’t appreciate the later consequences of disease or treatment,’ says Ms White, who has worked in cancer nursing for 30 years. ‘We don’t always tell survivors about the possibility of delayed treatment impacts that can affect their quality of life long after the initial treatment phase has ended.

The service, set up in 2010, saw 82 new patients in the first two years; most from gynaecological and breast units, followed by urology and lower GI.

Between 2013 and 2014, there were 44 new patients. Last year, to March 2015, the service saw 56 new referrals and delivered 187 hours of psychosexual therapy to individuals and couples, compared to 60 hours in the first year.

‘The aim is to build a three-tier service,’ explains Isabel White. ‘All affected by cancer deserve support from health professionals to improve self-care and management of sexual consequences.

‘At the second level, advanced practice by clinical nurse specialists and nurse consultants, medical specialists and allied health professionals offer specialist assessment, biomedical interventions such as hormone replacement therapy, medication for erectile dysfunction and limited information on sexual behaviour adjustments.

‘People experience more complex or enduring sexual difficulties if they have not responded to biomedical strategies, including those with multiple comorbidities, couple difficulties and those with emotional vulnerability before cancer diagnosis.’

‘Cancer survivors have a higher prevalence of adverse health consequences than an age-matched sample of the general population. These can have a significant effect on survivors’ daily lives, but most can be prevented by early detection or their impact decreased by timely and appropriate intervention.’

In a 2006 survey by the charity Macmillan Cancer Support, 26% of people with cancer said they experienced difficulties in their relationship with their partner as a result of their cancer diagnosis. The survey also found that 43% of people living with cancer said that their sex life had suffered.

Ms White’s doctoral research in 2013 found women were embarrassed to talk about sexual concerns during or after treatment; many felt it was not important enough to discuss with clinicians.

In 2009 the Marsden’s patient carer advisory group met chief nurse Shelley Dolan to express concern that cancer’s sexual impact was not being adequately addressed through support and rehab services. Dr Dolan secured funding from the Royal Marsden Charity, and Ms White was appointed in 2010.

She had already demonstrated a need for such a service through research studies funded by Cancer Research UK, Macmillan Cancer Support and Remedi, a rehabilitation charity. She also spoke to cancer nurses, doctors, allied health professionals and psychosexual therapists at conferences and on courses about the importance of early clinical assessment of sexual wellbeing and provision of specialist psychosexual support in cancer care.

Once in her new role, she set about improving patients’ sexual confidence by establishing a clinic and developing new management pathways for people with sexual rehabilitation needs. She has continued to improve patient care through supporting colleagues to develop confidence and skills in talking to patients about sexual concerns, training them to conduct systematic sexual assessments and make appropriate onward referrals to services within and beyond the cancer centre.

Dr Dolan says Ms White’s achievements in pushing the boundaries and ensuring people with treatment-induced sexual difficulties have access to expert psychosexual therapy are now acclaimed internationally.

‘Isabel has worked tirelessly to lobby and promote this area of care, while managing her own clinical practice,’ she says. ‘Her interventions in terms of care, education, research and publications have made a real impact on the science and care of people with cancer.’

Runner-up in the Macmillan-sponsored cancer nursing category of the 2015 Nursing Standard nurse awards, Ms White was commended for addressing ‘a tough area for people to talk about and making a personal impact on people’s lives’.

RCN chair of nursing research Daniel Kelly, who is also director of research and innovation at Cardiff University, says he nominated Ms White for ‘spearheading the need for more support to 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,’ he says.

Fatigue

Feeling sick

Pain

Bowel problems due to cancer treatment

Surgery or radiotherapy to the pelvic or genital area

State of mind – depression, stress, fear, anger

Side effects from certain drugs such as chemotherapy, blood pressure drugs, alcohol, nicotine, painkillers, anti-sickness drugs

Feeling unhappy with changes to the body caused by cancer or its treatment

Hormone imbalances in the body

Problems with the nerves or blood vessels in the pelvic area

Personal problems such as financial worries, work and relationship difficulties

Source: Cancer Research UK

‘She has used her enthusiasm, energy and drive to shape the need for this initiative. Referrals to the service are rising, indicating it is highly regarded by patients and colleagues.’

The therapy service now has five-year funding and has begun to address the psychosexual impact experienced by other groups affected by cancer, including teenagers, young adults and those with rarer cancers.

In the clinical improvement and research elements of her role, Ms White works with specialist nursing and medical colleagues, Macmillan Cancer Support and Prostate Cancer UK (PCUK) to develop and disseminate clinical guidelines to support colleagues who encounter more common difficulties, such as erectile dysfunction or treatment-induced vaginal changes.

There remains a lot to do to raise the profile of the sexual consequences of treatment

She is also working with PCUK to implement and evaluate a pelvic dysfunction outreach service for men and families affected by prostate cancer, co-leading a study that developed a brief cognitive behaviour therapy training programme for clinical nurse specialists to address psychosexual difficulties after gynaecological cancer treatment. She is seeking funding to pilot a patient-reported outcome measure to improve the clinical assessment of sexual wellbeing in this same group of women.

Future plans for the psychosexual service at the Royal Marsden include ensuring clinical sustainability at all levels and continuing to develop, test and inform others of new ways to deliver sexual rehabilitation and support within a resource-limited NHS.

Ms White hopes to continue improving access to sexual rehabilitation resources in cancer centres and units through collaboration with the Christie NHS Foundation Trust and the charitable sector, as well as ‘important lobbying and awareness raising’ via key charities such as PCUK, Jo’s Cervical Cancer Trust, Breast Cancer Care, Shine and Macmillan Cancer Support.

She is also passionate about removing considerable gender inequalities in this field.

‘There remains a lot to do in policy, clinical and research terms to raise the profile of sexual consequences of treatment within cancer survivorship,’ she says. ‘But recent documents such as Macmillan’s Throwing the Light on the Consequences of Cancer and Its Treatment from 2013, have ensured that we at least have our feet planted firmly on the lower rungs of that ladder.

‘What we urgently need is improved access to research funding that supports high quality, inter-disciplinary intervention studies in cancer survivorship to provide an evidence base for the services we must develop to better support people living with and beyond cancer.

‘And within psychosexual, and sexual medicine research specifically, we need to prioritise studies that develop and test interventions for female sexual difficulties after cancer treatment to begin to close the huge gender gap that exists and to create gender equity in high quality treatment and service provision’.

For a list of the finalists for this year’s RCNi Nurse Awards go to tinyurl.com/RCNinurseawards

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