Bolt Burdon Kemp: Sex with a Spinal Cord Injury - Keeping an open mind

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After a Spinal Cord Injury many people assume that they’re never going to be sexually active or fulfilled again. Lack of desire can be a direct result of the injury, depending on where along the spinal cord the injury is, but it can also be the result of living with the consequences of the injury. For example, adjusting to paralysis can lead to a period of sadness or grief, which clearly can affect sexual desire whilst the discomfort of certain symptoms can have a huge impact on your self-esteem. Your sex life as you knew it has changed, but that doesn’t mean that it’s over forever! Sex is a crucial part of living a full life and can ease physical pain as well as boosting your mental wellbeing. Naturally there are difficult dynamics to balance depending on your circumstances which may affected by whether or not you are in a relationship or if your primary carer is your parent or relative, as it can be awkward for them to balance your need for intimate independence with your care needs, however these are all issues that need to be addressed and help is out there.

Talking to a healthcare professional is a good place to start, however it can be hard. Most specialist spinal health care professionals should know how to deal with this and be able to suggest possible treatments and options available to you. However, other healthcare professionals may not bring up this topic themselves as it can feel intrusive, and instead wait for you to address it. Learning about your options, as well as how exactly your body works after your Spinal Cord Injury (SCI), is crucial to getting rid of myths and misconceptions.

Medical treatment is more commonly available to men with a SCI as they struggle to achieve an erection naturally and so more has been done to develop the science behind this. There are pills that your doctor can prescribe, as well as prostaglandins, which are man-made hormones that stimulate blood flow. Prostaglandins can come in injection or be inserted into the urethra in pellet form. Another form of treatment is a vacuum pump which uses pressure to create an erection and a rubber ring to maintain it. The NHS Choices website can be helpful for suggestions as to which kind of treatment best suits your needs, and which treatments are available on the NHS. Whilst these treatments deal with erections, ejaculation is a separate issue. Penile Vibratory Stimulation is recommended for men with a SCI as it has a high success rate, especially devices released more recently.

For women the physiological changes after injury are fewer, but do include a potential decrease in vaginal lubrication and a change in surface sensation. Arousal is still very much possible, however you may find that using a water-based lubricant can help if your SCI has limited the degree of natural lubrication. Some women with a SCI lose the ability to contract their muscles, and so different sexual positions or activities may need to be tried especially if muscle spasms are occurring during certain sexual activities. The majority of women with SCI are able to experience orgasm due to the female body having two separate kinds of arousal- psychogenic (mental) and reflexive (physical). It is the reflexive kind that can be damaged following a SCI, however the psychogenic kind remains effective. One aspect of being a woman with a SCI is that it can take longer to reach orgasm: one study reported an average time of 15-16 minutes for women without SCI and 26 minutes for women with SCI. This means that more stimulation may be required, and more foreplay, however it does not mean that getting pleasure from sex following a SCI is too difficult to even attempt.

Sexual fulfilment is for everybody and it is fair to say that the needs of people with disabilities are neglected in this respect. Certain companies, however, have identified this market and make products suited to a range of disabilities: Spokz has a very successful line of chairs called ‘the IntimateRider’ which helps couples overcome a limited range of motion by rocking with minimal effort to enable a thrusting effect. This is a very popular product for those with a high level spinal injury as it requires little or no core stability to be used safely. It’s not just mobility that can be an issue but also dexterity and sensation, and there are novel ways that makers of these ‘toys’ get around the problems that some customers may face. For instance, there are a range of hands-free masturbation devices that can be turned on/off via remote control (the ‘Turbo Stroker’/the ‘Humpus’) so upper body weakness doesn’t have to be an obstacle, and some products especially for the female market include underwear with vibrators already sewn in. The MA+ Guide is a guide to sex toys, which is written for people with Multiple Sclerosis (MS) a muscle wasting condition, but which can apply to both those with MS and those with a SCI.

Many supportive sexual experiences happen within loving relationships and this is an important facet of anyone’s life. Coping with a SCI when you already have a partner throws up one set of difficulties, and finding a partner following a SCI throws up very different issues. What is important in both contexts is being able to communicate your wants and needs with whoever it is you hope to be with, whether they are also disabled in some way or not. The Outsiders Trust organisation is a great way to meet people in similar situations, and their Outsiders Club can help provide friendship and potentially something more.

One particular fact that many people are not aware of is that paying someone to help you sexually is not actually illegal. Activities that commonly accompany this exchange, such as soliciting in a public place, or kerb-crawling, are illegal however a number of websites and directories online can direct you to a local sex worker. The Sexual Health & Disability Alliance (SHADA) offers advice on how to ensure that it is a beneficial experience and no one is taken advantage of, and links visitors to The TLC Trust which connects disabled men and women to responsible sexual services. The term ‘Surrogate Partner’ is used by those who prefer it to describe someone offering sexual help in exchange for money.

For many disabled people feeling accepted physically and embraced is an incredibly powerful experience.

Peer support is crucial to explore and fulfil your sexuality after a SCI and there are a number of forums and sources of information that can help you recover your sensual side: SHADA as discussed above; Sex and Disability Helpline (0707 499 3527 11am-7pm weekdays); TLC for disabled men and women to contact responsible sexual services; ASAP Sexual Advocacy for disabled people and their professionals; and Apparelyzed forums, in particular the fertility forum which gives a lot of peer advice on what to use and how best to use it.

And for those that are desperate to get away from the internet, there are plenty of modern books about sex that include aspects of disability and advice on different approaches: The Ultimate Guide to Sex and Disability edited by Miriam Kaufman, Cory Silverberg, and Fran Odette 2006; New Joy of Sex by Susan Quilliam 2008 Octopus; The Sex Book by Suzi Godson 2002 Cassell; Guide to Getting It On by Paul Joannides 2000. The MS Guide is also a good and reassuring read that can apply equally to those with a SCI.

In an ideal world, following a SCI your care plan would include personal relationship support that encompasses sexual fulfilment, and sources of support would be clearly made available. Until this happens, however, do not dismiss your sex life as being over. Whilst previous enjoyment may change, that does not rule out all enjoyment, and the overriding message from many peers that have rediscovered their sex life following a SCI is that you just need to think creatively and be persistent.

At Bolt Burdon Kemp we understand that life with a SCI shouldn’t mean giving up on everything you previously did and enjoyed. Whilst we can help with your claim for compensation for the SCI, you have the rest of your life to live to the full and we aim where possible to obtain the security to enable you to do so.

Mariel Stringer Fehlow works with Raquel Siganporia in the Spinal Injury team at Bolt Burdon Kemp. 

If you or a loved one have suffered an injury as a result of someone else’s negligence or you are concerned about the treatment you have received, contact us free of charge and in confidence on 020 7288 4844 or at raquelsiganporia@boltburdonkemp.co.uk for specialist legal advice. 

Alternatively, you can complete this form and one of the solicitors in the Spinal Injury team will contact you. You can find out more about the team here.

Bolt Burdon Kemp: To Consent Is Not to Concede

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Consent seems like a simple concept: A doctor lets you know which procedure you’re having, they explain the risks and, if you agree to have the medical intervention, you say ‘yes’. Job done. 

Despite it sounding like a straightforward process, there are a lot of myths and misunderstandings surrounding the issue of consent. 

In today’s blog we will bust some of those myths, explain your rights and describe the process that your doctor must take you through if they want to attain your informed consent in the eyes of the law. 

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The misunderstandings: 

1. Myth: The biggest misunderstanding (and for us lawyers, the most alarming) is that the patient, by signing the consent form, has waived their right to claim damages for those injuries listed as ‘risks’ in the event they occur. 

Bust: To illustrate this point, we have had first-hand experience of people believing that there can be no claim for paraplegia caused by negligent surgery, because ‘paralysis’ was listed on the consent form. This is wrong.

The risks on a consent form are there to inform the patient of the known side effects of a procedure. If you sign the consent form, you accept that you may experience some or all of these injuries, but only if they arise naturally. You do not agree to sustaining these injuries if they are caused by the mistakes or omissions of the doctor or medical team. 

It is worth clarifying this point further by saying that the law does not allow a doctor or medical professional (or anyone for that matter) to exclude or restrict their liability for death or personal injury, resulting from negligence, by giving notice of this possible outcome.

2. Myth: The doctor knows best; he’s in charge.

Bust: Gone are the days when it was believed that doctors were infallible intellectual titans and their patients incapable of understanding or unable to make informed decisions.  A lot has changed, for example:

There is now a recognised right to self-determination, protected by Article 8 of the European Convention on Human Rights along with a number of other pieces of legislation;

The General Medical Council (GMC) guidelines impose a duty on doctors to “work in partnership with patients. Listen to, and respond to, their concerns and preferences [...] Respect patients’ right to reach decisions with you about their treatment and care”;

Medical paternalism is no more. Patients are now (rightly) considered as adults and equals – they can understand the treatment and the risks; they are able to make their own decisions and accept responsibility for their actions.

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3. Myth: The doctor explained the risks to the patient. The patient agreed to those risks and so they gave their informed consent.

Bust: Not true.  Whilst it is right to say that a doctor should advise the patient of the risks, they must also discuss the anticipated benefits and the reasonable alternative treatments. Only then can the doctor be said to have fully explained the procedure and only then can a patient give their informed consent. Just explaining the risks of the proposed procedure is not enough

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4. Myth: Doctors in the UK are too busy to have long conversations about risks and benefits with each and every patient. 

Bust: This is simply wrong. The GMC have, for a long time, required a dialogue between doctor and patient. Recent legal decisions now impose an obligation for doctors to pause and engage in a discussion about consent. This may be unpopular with some doctors who are in a hurry or don’t like communicating, but they will have to adjust.  Many other jurisdictions around the world have imposed these obligations and it works there.  Our health system must adapt and a patient should never feel rushed into a decision or compelled to make a decision without all of the information.

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5. Myth: The science involved in a treatment is very complicated and the patient wouldn’t understand. In such circumstances, it is right for the doctor not to try to explain the treatment and to just do what they think is best for the patient.

Bust: Yes, you guessed it – this is wrong.

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We live in an age when it is very easy for anyone to obtain information from the internet, support groups and other resources. Moreover we, as the patients, are now expected to read and understand more than ever before: pharmaceuticals have important information sheets for us to read and we are given countless information leaflets about the illness that we are suffering from, or the treatment we are about to receive.

As discussed in Myth 2, it would be wrong to propose that the doctor-patient relationship is the same as it was 100 (or even 50) years ago - patients are now much more able to access and understand medical information than ever before and the power in the relationship has shifted accordingly. 

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6. Myth: The doctor did explain everything to the patient and the patient consented without understanding the information. That’s the patient’s problem.

Bust: Wrong! It is the doctor’s problem. As mentioned in Myth 3, the doctor is under a duty to ensure the patient has understood the seriousness of the condition, benefits of the treatment, risks and alternatives. In order for the doctor to be satisfied that they have fulfilled this duty, the information must have been comprehensible to the patient. It must be in plain and simple English, describing concepts that the patient will be able to grasp. This legal obligation cannot be fulfilled by the doctor blitzing the patient with complicated information, facts, figures and science. 

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7. Myth: A doctor must always provide the necessary information.

Bust: Despite the big shift in the doctor-patient relationship, there are still some instances where a doctor can withhold some information. The obvious scenario is in emergencies, or when the patient is unconscious. However, the law does also allow what is called the “therapeutic exception” where they may withhold disclosure of certain information if they reasonably consider that it would be detrimental to the patient’s health. However, judges have been very clear to point out that this is a very limited exception and should not be abused – it is not there to allow the undermining of the principles of informed consent.

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8. Myth: In light of all of the above, a patient who doesn’t want to hear the risks of, or alternatives to, a treatment cannot consent to it.

Bust: That can’t be right. After all, patients are now considered to be adults, and adults are entitled to consent to something whilst refusing important information, if they so wish. Where a patient doesn’t want to hear the risks (whether out of fear or disinterest) a doctor is not obliged to tell them. However, the doctor must make a reasonable judgment call as to whether the patient really doesn’t want to know the information. After all, it may simply be the case that the patient is reluctant to listen because the doctor is not effectively explaining what they need to know.

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9. Myth: The doctor spent many hours with the patient, discussing each and every one of the risks of the treatment, as well as the benefits and alternatives. They have definitely met their obligations.

Bust: Swing and a miss. The law doesn’t ask the doctor to explain every risk; it asks them to advise of the material risks. This, in turn, doesn’t simply mean that the doctor just needs to mention the biggest and most likely risks. It isn’t a question of percentages. The doctor must exercise their judgment and consider what is material to that specific patient. What is material to each patient will be different: some will care more about the type of risk, others the effect, others the benefit sought and so on.

Equally, when a doctor does advise about risks, the information must be correct. This sounds obvious, but we have seen examples where doctors have overstated some risks and understated others. 

Misinformation can lead to patients consented to procedures they wouldn’t have otherwise, or perhaps refusing treatments that they should have consented to! Both of these outcomes might lead to avoidable harm being caused.

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10. Myth: A patient must always sign a consent form.

Bust: This is not entirely true. For lesser procedures or tests, such as for stitches or a blood test, a consent form isn’t strictly necessary – a patient can consent verbally or by their actions e.g. by holding their arm out towards the needle. 

However, for more significant procedures where there are higher risks or where serious harm could result, written consent is very important. In most cases it is not a legal requirement, but it is good practice. 

The consent form should record all of the key elements of the information discussed, any specific requests by the patient, any information given to the patient and the details of the decisions that were made.  A form without any evidence of such discussions will not become valid consent just because the patient has put their signature at the end of the form.

It is good practice that consent is obtained well in advance of the procedure so that the patient has time to ask questions and the clinician has time to provide enough information. If consent is left until just before the procedure, when the patient may be feeling particularly scared and vulnerable, there may be real doubt as to its validity. 

 

Bruno Gil works with Raquel Siganporia in the Spinal Injury team at Bolt Burdon Kemp. 

If you or a loved one have suffered an injury as a result of someone else’s negligence or you are concerned about the treatment you have received, contact us free of charge and in confidence on 020 7288 4844 or at raquelsiganporia@boltburdonkemp.co.uk for specialist legal advice. Alternatively, you can complete this form and one of the solicitors in the Spinal Injury team will contact you. You can find out more about the team here.