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Helping patients to talk about intimacy or sexual problems caused by treatment

Initiating discussions with patients about their sexual and intimacy needs is not always easy for clinicians. Specialist cancer nurse and psychosexual therapist Julie Hoole, who won an RCNi Nurse Award for developing a sexual function and intimacy questionnaire, offers advice on how to broach this subject with patients

Initiating discussions with patients about their sexual and intimacy needs is not always easy for clinicians. Specialist cancer nurse and psychosexual therapist Julie Hoole, who won an RCNi Nurse Award for developing a sexual function and intimacy questionnaire, offers advice on how to broach this subject with patients


Julie Hoole developed the MHK Tool to help nurses talk to patients 
about sexual or intimacy problems. Picture: John Houlihan

Holistic needs assessment is an everyday term in nursing, and we pride ourselves on supporting the whole person. So when a patient ticks a box saying they are having sexual problems, what do you do?

  • Enter the Excellence in Cancer Research category of the RCNi Nurse Awards 2108 here

As health professionals we are happy to talk about bodily functions in detail, such as the management of constipation, but in many cases something stops us broaching the subject of intimacy and sexual function.

The reasons why we don’t raise the subject include not knowing what to say, cultural taboos, and lack of confidence in knowing what to do if the patient has a problem.

Meaningful conversations

Feeling that you lack expertise in this area can also be a barrier, but you don’t need to be an expert psychosexual therapist to offer information that may be helpful. Sometimes it is just about using simple language that patients can understand.

The biggest issue is opening the door to the discussion in the first place. This is why we have developed a tool to help healthcare professionals have conversations with patients about any sexual or intimacy problems they may be having that are exacerbated by their illness or treatment.

  • Related: Read more about the MHK tool here

Even without an assessment tool as a guide, one of the simplest things you can do is know where to refer those who need help.

The charity Relate, which provides relationship support, accepts self-referrals. Patients may have to pay for services, but they are sometimes free if they are referred by a GP for illnesses that affect sexual function, such as cardiac disease, diabetes or cancer. Some hospitals also have psychosexual therapy services to which patients can be referred.

‘Understanding that it is the medication that is taking their desire away, not lack of interest in their partner, could be very important to both patients and their partners’

You don’t have to have all the answers, but be confident and open in your body language when asking questions. A third-person approach is often helpful, so you could say something like: ‘Some people who have had this treatment or surgery have felt that things that have helped them are…’

Discussing medications with patients offers the perfect opportunity for sexual health education and supporting self-management, giving your patients ‘permission’ to open up and discuss issues related to intimacy and sex.

When prescribing medication or checking how it is working, you could say: ‘This medication can reduce your libido. It could reduce your desire to be close to your partner, even down to not being interested in cuddles.’

If you are feeling brave, you could say: ‘Just so you know, this medication can take sexual desire away. If this is a problem please let me know, as there may be an alternative.’

Or even: ‘This medication may dry your mouth and can also dry vaginal secretions, so you may want to use a lubricant for everyday pleasure or intimacy.’

Another option could be: ‘How are you and your partner? Are you having time together to be close? To cuddle? To talk?’

‘The relief can be huge’

Understanding that it is the medication that is taking their desire away, not lack of interest in their partner, could be very important to patients and their partners. The relief can be huge, and it can also help the patient make choices about medications.

And don’t presume that intimacy and sexual function is only for the young. It is an important part of the holistic care of all our patients.


Julie Hoole is a psychosexual therapist who has spent 16 years in specialist cancer nursing, and is currently a Macmillan strategic partnership manager. She won the Excellence in Cancer Research award at the RCNi Nurse Awards 2017 for developing the MHK Tool, a sexual function and intimacy questionnaire.

 



For information about RCNi Nurse Awards 2018 and to enter click here

 

The couple who had the same cancer

Tracey and Jim Brook, who have been married for more than 30 years, have been treated for identical throat cancers – Jim in 2011 and Tracey in 2015.

Since then, they have worked alongside the head and neck cancer team at Huddersfield Royal Infirmary to help support other patients.

Working with nurse Julie Hoole, they helped develop the MHK tool, a sexual function and intimacy questionnaire to aid health professionals advising cancer patients on how to deal with changes in their sexual and physical relationships during and after treatment.

Tracey didn’t need chemotherapy but says her treatment left her feeling exhausted, with the unpleasant side effects including loss of saliva and a sore mouth and throat.

Issues never discussed

Jim’s treatment was more intensive, with 35 double-dose sessions of radiotherapy and two doses of intravenous chemotherapy.

Sexuality and intimacy was never raised with either of them before or during their treatment, but they wish it had been.

‘The treatment of most head and neck cancers leaves the patient with decreased functions in the head and neck, especially the mouth,’ says Jim.

‘Loss of saliva can make the patient self-conscious, as well as impaired when it comes to kissing and probing with tongues. Sometimes, in more severe case where surgery has been essential, the patient can suffer from physical deformity, which can be damaging to self-confidence.

‘These issues were never discussed with Tracey or me in either of our diagnoses, nor in discussions regarding treatment,’ he adds.


Julie Hoole gives patients confidence as well as support, and exudes enthusiasm
for her job, says patient Jim Brook. Picture: John Houlihan

‘We had a steady intimate life prior to me being diagnosed, and since Tracey has been recovering I think it may well have improved. Experiences like ours have given us a different view on many things – life, mortality – so we now live every day as if it was going to be our last.’

Tracy says although sexual function is the last thing on your mind when you are undergoing treatment, some kind of intimacy isn’t. ‘Just a cuddle or having your hand held makes you feel less alone, which is very important,’ she says. ‘Once recovery starts, normal desire returns, but your body is different due to the after-effects of the drugs and treatment.’

Deciding the questions

The couple took part in focus groups that discussed the MHK tool during its development, explaining what information they would have liked to have been given and when. They helped decide what questions could be pertinent to ask future patients and their partners, and had input into the layout of the tool.

‘Because we have both been the patient and the carer, we experienced both sides of the coin. As a carer, you do not want to put pressure on your partner, so are unsure how intimate to be. As a patient, you have lots of new things to get used to and are unsure how your partner will feel towards you,’ says Tracey.

‘The after-effects of our respective treatments made a difference to our intimacy and relations,’ says Jim. ‘But after discussions with Julie, we learned to accept the “new normal” and find different ways to discover each other again. This has helped us to further strengthen our relationship.’

What would help

Asked what their advice would be to nurses about discussing intimacy and sexuality with a patient with a cancer diagnosis, Tracey says: ‘Everyone is different, but if people know at the beginning that things may change, but not to worry as there is lots of advice and help available when they need it, that would help.’

Jim agrees that although there is no hard and fast rule that will suit every patient, the subject should be broached in the early stages of treatment.

‘The patient may still be taking in all of the life-changing information and not really listen at the beginning, so I would suggest broaching the subject again in the first two weeks or so of treatment,’ he says. ‘The patient will have settled into their treatment routine at this stage, but will not yet be too ill to be able to listen and comprehend.’

They are especially grateful for the support Julie has given them as a couple. Her ‘big caring personality’ and ‘great sense of humour’ are very important, says Tracey. ‘She is passionate about her job, is a good listener and gives sound practical advice.’

Jim says her disarming manner puts patients at ease straightaway. ‘She gives patients confidence as well as support, and exudes enthusiasm for her job. You can tell that it truly is her vocation.’

Interviews by Nursing Standard managing editor Elaine Cole

The 2017 Excellence in Cancer Research Award was sponsored by Cancer Research UK

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