The Sexual Respect Tool Kit
for GPs and other medical, health, and social care professionals
to learn how to feel more confident
about initiating conversations about sex and relationships
with patients and clients
The Tool Kit has its own website at
www.sexualrespect.com
Tool Kit’s Background
The Conference we put on at the Royal Society of Medicine in 2009 was preaching to the converted and we needed to find a way to reach those who find the subject difficult.
The conference was also too academic and this kit brings a pro-active diverse team together, both disabled and non-disabled.
The idea of the kit came from a woman with MS, Alex, whose supra-pubic catheter was inserted in an inconvenient position .
One of our team, Roger Clements, says, “Even gynaecologists can’t talk about sex”.
We’ve seen too many situations where sex is not discussed, to the detriment of the client or patient.
Why the Tool Kit is Needed
- Disabled people complain that they only get practical help
- A new piece of research reported in Community Care 10th February 2011 states that 42% of people feel depressed because they felt alone and 30% are too embarrassed to admit to being lonely. A follow-letter stated that 48% of people with sight loss feel left out of society.
- Patients are not consulted about sex
- Health professionals say “sex is unimportant compared to other problems presented”
- Health professionals who want to discuss it, say it’s very difficult to talk about sex
- Just waiting for client to ask about sex, does not work
- The task of discussing sex is usually left to one member of staff who might leave
- Professionals know they can get away with ignoring it (except those who work with people with learning difficulties)
- Professionals are afraid of repercussions
- Patients have developed a mis-trust of professionals from past experience of judgmentalism over their tastes
- There is a lack of tutors who are themselves credible and confident at this. The vital aspect of role modelling is missing.
- The people who need the Tool Kit most are very unlikely to change because they are afraid
How we will overcome the fear
- Produce a really attractive product that is a joy to own (like a travel guide, with CD & DVD disks in pouch)
- Remind them that “thinking about discussing sex with patients is harder than actually discussing sex with them, the reactions we’re fearful of very rarely occur.” Dr Daniel Atkinson
- Demonstrate that the repercussions won’t be catastrophic
- Demonstrate the important of talking about sex, both as a diagnostic tool (eg diabetes) and because sex plays a vital role in health and life
- Get the Kit written into the care standards, guidelines, and procedures and recommended by the training bodies who regulate courses
- Try to get the support of the Department of Health who now consider sex to be part of holistic care
- Make it become part of an IPL (Inter-Professional Learning) project
- Good PR
What the Kit will Comprise
- Pocket Book containing:-
- Beautiful, clear illustrations, fun approach, and inclusion of diversity of gender, orientation, behaviour and preferences
- Reasons why it’s important to appear relaxed and positive
- Concise. Further reading supplied
- Talking about sex does not “open a can of worms”
- It’s a personal choice to not want sex but most people want it
- Good opening lines
- Simple straightforward knowledge on sex
- Simple straightforward knowledge on loneliness
- Quotes and stories from patients, clients, health professionals, sex workers, PAs and disabled people
- Glossary of Terms
- Communication Guide
- Talking about sex and loneliness to people with disabilities
- Pain, fatigue and spasticity
- Female Genital Mutilation
- Continence and incontinence
- Clarification on the law
- Sexual minorities
- Tips for surgeons
- Tips for oncology nurses
- Tips for psychotherapists
- Tips for rehab units
- Tips for OTs and physiotherapists
- Tips for GPs
- Medication that interferes with sexual function and pleasure
- Tips for social workers and care staff
- Tips for residential home and college staff
- Short life expectancy
- Working with people with learning difficulties
- Happy outcomes
- How to run a workshop that addresses our professional comfort and sexuality
- List of Trainers
- Hand-out
- Audio CD
For professionals to listen to (probably in the car or when on the move, particularly GPs and people who are very busy).
It will be short and sweet, giving simple reasons for this kit, simple instructions and audio examples of how to initiate conversations about sex in several different situations.
- Audio-Visual DVD
For watching in a group.
Starting with an introduction by Alex Cowan on why she invented the Tool Kit and what it aims to do.
A team of professionals (some of whom are disabled), all from different disciplines are seen seeing several clients of various ages, appearances, disabilities, genders, orientations and with a variety of conditions. We will select the “most difficult” clients, for example a highly confident woman who has Lupus, a physically “conventionally unattractive” man, somebody with Aspergers syndrome, a pretty young lady who has a hidden disability and is, in fact, very lonely.
Authoritative figures from a wide range of areas, including religions, speaking on how important this topic is.
- CD with Posters as jpeg
Range of 6 posters which are: permission-giving, witty, unthreatening, artistic, plain-speaking and striking;
to be high resolution, so they can be printed out any size.
- Hand-Out / Leaflet
- Text to be in 12pt – large enough for disabled readers
- Local information to be filled in by owner.
- To be photocopied on A4 and folded.
Our Team and their Expertise
Alex Cowan
Promoter of disability awareness and equality. Chair of a disability committee for a charity, advising them on inclusive access and design for their new North London development. Also a performer, writer and spokesperson on disability and sexuality. Alex was selected to speak on the Channel 4 TV Sex Education Show. Alex has MS and is the woman who originally had the idea for the Tool Kit.
Roger Clements BA, BM, BCh, MA, FRCS(Edin.), FRCOG
Roger was appointed consultant obstetrician and gynaecologist at the North Middlesex Hospital 1973-1994. In 1991 he became its Medical Director until retiring from the NHS in 1994. He became the editor of the journal Clinical Risk and since 1970 has appeared in Court, acting as an expert witness in, more than 60 cases. He is a Fellow of the Academy of Experts and is a founding Governor of the Expert Witness Institute.
Roger says
“
It is a sad reflection on medical education that so many doctors are embarrassed to discuss the technical aspects of sex with their patients. Even gynaecologists (who might be expected to have a working knowledge of the subject) are usually hopeless in dealing with sexual dysfunction. If they become shy and evasive with able-bodied patients, it is small wonder that they cannot face the issue of sex and disability. Initiatives such as this tool-kit are urgently needed to inform and empower those who are in a position to help
but singularly fail to meet the challenge.”
Dr Tuppy Owens BSc, DipHS
With a BSc in zoology, Tuppy became a successful publisher of sex education books from the 1960s to the 1990s. She founded Outsiders in 1979. She gained a Diploma in Human Sexuality from London University, qualifying her as a sex therapist and was awarded an Honorary Doctorate for Good Work from the Institute of the Advanced Study of Human Sexuality in San Francisco. In 2010 she was named one of the Family Planning Association’s 80 most influential achievers. Tuppy runs Outsiders, SHADA, the Sex and Disability Helpline and our associated fundraising events. She is the agony aunt for INSIDE.
Dr Antony Lempert
Antony is a GP in rural Wales and runs the Secular Medical Forum. The Forum aims to stop religion interfering with people’s personal rights, abolish all forms of ritual genital mutilation, and improve access to emergency contraception and abortion. He expresses his views in a gentlemanly, yet logical manner.
Helen Croydon
Helen Croydon is a print and broadcast journalist, specialising in investigations and features on relationships and sex.
Helen writes regularly for The Times, Sunday Times, The Telegraph, The Guardian, The Independent, The Daily Mail, and various magazines.
She has a monthly column in The Erotic Review and has written “The Sugar-Daddy Diaries”.
She won an award for Radio 4’s File on 4 and has produced and presented documentaries for TV and radio in the UK and in the US.
Dr Daniel Atkinson
Dr Atkinson is a regional clinical governance lead for primary care and sexual health for Assura Medical, based at the Langbaurgh NHS Medical Centre at Redcar Primary Care Hospital. He is a GP who is passionate about making sure that staff enable residents to live their lives to the full, which includes the opportunity for sexual fulfilment, rather than trying to ensure that residents conform to the rules in order to make the staff’s lives easier! He says, “thinking about discussing sex with patients is harder than actually discussing sex with them, the reactions we’re fearful of very rarely occur.”
Susan Quilliam
Author of the award-winning New Joy of Sex, and the writer of 21 books in 33 countries and 24 languages, including three for Relate and The Samaritans. She comments and writes regularly for the national and international media and is agony aunt for Top Sante magazine and five medical websites. She is the Consumer Correspondent for the Journal of Family Planning and Reproductive Health and is an Associate member of the Royal Society of Medicine and a member of the College of Sexual and Relationship Therapists. Her work won PR Week Awards for Campaign of the Year and Ethical Health Care and she was recently named one of the Family Planning Association’s 80 most influential achievers in the field of Family Planning.
Dr Brian Whitehead
Project Manager of SHOC, a unique agency delivering of evidenced-based sexual health initiatives rooted in the community. Brian pioneers in teaching GPs and other health professionals about improving their management of Sexually Transmitted Diseases and other sexual health issues. He organises conferences, workshops and seminars, and campaigns for GPs to do more to promote sexual health. He works as a counsellor in general practice in London. SHOC has made some successful films for young Londoners to encourage them to use safer sex.
Sue Lennon
Sue has combined her 20+ years experience in oncology nursing with psychosexual therapy to develop a novel NHS service in North Yorkshire. It offers specialist support to patients who experience sexual difficulties as a result of cancer or cancer treatment. Sue is passionate about helping other health and social care professionals to include sexuality in holistic care. To this end, she and another sex therapist, Michelle Donald, who is spinally injured, offer dynamic and interactive workshops around “cancer and sexuality”, “intimacy at the end of life” and “sex and disability” through i-said (see www.i-said.co.uk).
Sue Lennon writes:
“The Kings Holistic Assessment dictates that we should assess “sexuality” and relationships at various points in the cancer journey just the same as all other aspects of holistic care. These points are at, diagnosis, before treatment, after treatment, in follow up and at discharge, whether that is through cure or to palliative care (which acknowledges the roll of intimacy at the end of life..(Hoorah!)
Many cancer nursing staff are aware of this and mostly want to do it, but as far as I can see from my training work with I-said, they don’t know how, are afraid of upsetting someone or being left holding a can of worms that they cannot contain. This is part of the beauty of having a dedicated service like mine to provide training in the hospital setting.
I usually acknowledge the sexual impact of cancer and cancer treatments from the very start, talk about the validity of these concerns and that we as cancer nurse specialists do have a role in helping to address any sexual matters as they arise. I then keep the door open for ongoing discussion throughout the cancer journey....and tell the patient to expect that I will ask them from time to time. I document if the patient absolutely objects to this and why....
Over time I talk about sexuality in its broadest sense: body image, premature Menopause , physical inability to accommodate a penis or to get an erection, we talk about the impact on the partner if there is one, how to get a partner, sense of self as a woman or man, etc.
In training work I challenge hospice staff to consider their attitudes to Masturbation , partners sharing a bed or a bath with the patient, privacy and dignity and the role of sex and intimacy at the end of life. Again they are interested and excited about expanding sexual horizons for patients, but it still boils down to opening up conversations and managing the responses....I usually promote some “stock phrases” to help them to start the ball rolling....they can practice them and find ones that they feel comfortable
with.”
Michelle Donald PG Dip.PST
Michelle has recently been appointed psychosexual therapist at Stoke Mandeville National Centre for Spinal Injuries. Being spinal injured herself, Michelle knows how important it is to address sexuality after a spinal cord injury. She believes that this aspect of life is often neglected, with the focus being on the physical dysfunction. Michelle works from her own private practice in Lancashire. She is a speaker, trainer and mentor for The Back Up Trust, a national charity that helps spinal injured people build confidence, gain motivation, and independence. She and Sue Lennon run a training programme, i-said (see www.i-said.co.uk).
Sue Newsome
Teacher specialising in sex. Sue runs groups and works with individuals to help them maximise their sexual pleasure and overcome any difficulties resulting in physical or emotional impairment. Sue’s work with a quadriplegic client was the focus of one of the performances at our conference at the Royal Society of Medicine. She is also currently a student at the Porterbrook Clinic, Sheffield, studying to become a sex therapist.
Sally Lee
Sally works part time in a small physical disabilities social work team in Dorset and is doing a part time Professional Doctorate at Bournemouth University.
Her initial research proposal concerns the sexual wellness of people with physical disabilities and whether the “caring” services,
specifically the statutory sector, have a role to play in enabling people to achieve their sexual selves.
Part of her research plan is to find out from service users what sort of services or advice regarding sexual wellness
would be relevant and helpful, and to get information from social work and other professional colleagues about what they think would help them
deal with this subject in a responsive and confident way. This is particularly difficult in her geographical area, as everybody knows each other’s business.
Clare Richards
Clare is the documentary maker who directed “Disabled and Looking for Love”, the BBC3 documentary about Outsiders that won her the Newcomer Grierson Award. She did the filming of disabled people for our conference at the RSM. She also worked on a series of six documentaries about the Katie Piper Foundation (people with disfigurements). She is totally trustworthy and sensitive.
Preliminary meetings
Seven key meetings have been held in London, where disabled people met up with members of our team
(sadly we never managed a conference where we could all attend) and collaboration continues.
Antony and Tuppy are now writing a Sex Dictionary to assist the GPs and other health and social care professionals.
As different scenarios were being acted out for the filming (which took place with some of the meetings),
it was good to see just what benefits are created by discussing sex.
The outcomes for us were basically:-
- There is a very pressing need for the Kit
- Many patients and disabled people are actually very angry about past experiences and the way their sexuality goes unregarded and feel unable to express their dissatisfaction
- Many health professionals told us that, however much they want to bring up the subject of sex, they never quite do
- GPs won’t read anything more than 2 pages, or 8 pages of well-spaced, large text
- We can signpost people who want to know more to the e-book or only Tool Kit
- Health and social care professionals would like training as well as the tool kit
- The language of the kit needs to be very gentle and unthreatening with no mention of alternative sexual practices but reminding the reader about lesbian and gay clients
Filming
Clare has filmed and recorded:
- eight interviews including two GPs, a surgeon, and a deaconess
- fifteen sessions with clients
- peer counselling in action
Progress
While still in a draft form, the Kit was sent out to be tested on various groups and individual in a wide variety of the professions, such as The Islington Multiple Sclerosis Nurse Service and Patient Advice and Liaison Service at Outlook. The team is looking into sponsorship, working together with a commercial manufacturer to get the kit financed and distributed, hoping to speak to the Department of Health, seeking publishing deals and a whole range of outlets.
On Wednesday 20th June 2012, Dr Tuppy Owens was one of the invited speakers at a conference in Loughborough, and she used the occasion to launch The Sexual Respect Tool Kit (see
the news item about this).
For the launch, we created the Tool Kit's own website at
www.sexualrespect.com
