8th April 2011


Report on 12th Meeting

 

ATTENDANCE LIST

 

Dr Tuppy Owens (convenor, scribe and speaker) Outsiders

 

Adam Thomas (chair) – Elfrida Society

 

Katie Wiltshier (secretary) Occupational therapist

 

Els Payne (coordinator) Outsiders

 

Victoria McKenzie – Freelance trainer

 

Alex Cowan (speaker)

 

Lorna Couldrick  (speaker) Educator/researcher

 

Eliot Lamb – Independent Living Solutions

 

Rebecca Lowrie – Tantra teacher

 

Tristana Lauro – London Tantric Temple

 

Lorraine Stanley – training consultant/author

 

Dominic Webb – (speaker) trainer

 

Sally Lee – Social worker/researcher

 

Simon Wilson – Independent Disability Trainer

 

Anji Page – Sense

 

Greg Sams – (speaker) - Outsiders

 

Miguel Tudela de la Fuente – (speaker) – FPA

 

Michelle Donald (speaker)Sex therapist and trainer

 

Mandi Peers – (speaker)Outsiders

 

Jonathan Werren – (speaker)Outsiders

 

Sue Lennon – (speaker) – Urology nurse and sex therapist

 

Eleni Stephani (speaker) Outsiders

 

Sarah Jones Nash (speaker)

 

Michael Hanrahan –

 

Mel Halacre – (speaker) Spokz People Services

 

Steve Dent – (speaker)Spokz

 

Shah Rashid

 

Jennie Williams – Enhance the UK

 

Kate Copstick – speaker and subject of Sexual Respect Tool Kit on Lupus

 

Clare Richards (filming)

 

 

Apologies

Emma Cogan, Roshan Nair,, Rhian Ecclestone, Jayne Horton, Laura Skorupa, Aldo, Sarah Robinson, Darja Brandenberg, Lorraine McGinlay, Zoe Grace Cozens, Jon Clugston, Steph Palin, Petra Boynton, Paula Thompson, Paul Casey, Johnny Coleman, Lisa Ferguson, Eirwen, Sue Newsome, Chris Dabbs, Elle Bullimore

 

 

ACTION:

 

 

 

 

 

 

 

 

  1. 1.      Presentations/Discussion – Spasms, Spasticity and Sex

 

Michelle Donald gave a very interesting presentation on spinal cord injury and spasms – powerpoint attached.

 

Dominic Webb then spoke about baclofen pumps for controlling spasms.  Dom has a C3-4 injury, and initially had problems with very strong spasms in his legs and stomach after his injury.  He now uses an intrathecal pump – a pump with medication inside, usually baclofen.  The pump goes under the skin (needs an operation to insert).  Dom is able to pump baclofen directly into his spinal cord at the place where spasms are controlled.  It means less medication is needed than if taken orally.  The pump is changed every 5 years, and is injected with baclofen every 6 months.  He also as a computer which says how long the baclofen will last, and oral medication as back up.

 

Dom has found the pump is helpful, experiencing fewer spasms now, unless he has an infection or is immobile.  There are no side effects if the dosage is correct.  However it is quite large so can be intrusive, especially for people with a small frame.  It can also have an adverse effect on erections.

The pump can also be used with medication for pain relief.

 

Alex Cowan described a love/hate relationships with her spasms.  On a positive note it gives her body a work out, which she finds helpful.  However difficult to get a good seated position in her wheelchair.

Alex’s personal experiences are with tizanidine which can help her relax but also affects her mind so she can’t think clearly.  She has also tried sativex – a new cannabis based drug for people for people with MS to manage their spasms.  This results in reduced pain and spasm initially but then a couple of hours later feeling depressed and panicky.

Her view is that the baclofen pump is too big – she still wants to feel like a woman/sexy.

It is difficult to balance medication side effects with having a life.

 

Main points of discussion following the above presentations

 

 

4, Presentation/Discussion: Freedom of Information and Legal Issues

Jonathan presented some Outsiders research on FoI, looking at what social services are doing.  A questionnaire was sent out asking 5 basic questions.  The main contentious question was the use of sex workers.  Some councils were ill informed as to legal issues regarding use of sex workers, thinking that using them is illegal which is not the case.

 

Current legal position is that prostitution itself is not illegal, but procurement of a sex worker for someone else is.  It is important to note that booking an established sex worker is not procurement. Procurement is getting someone to become a sex worker.

 

There is a lot of fear around this issue especially with care homes how worry about prosecution.  However Equality of Access should be used to uphold Human Rights (right to privacy).  Social services have a positive duty to uphold this.

 

It appears there is a massive ‘anti-sex’ culture to overcome in care homes, etc in the UK.

 

On a positive note, Miguel is training staff working with people with learning difficulties around addressing sexuality and sexual needs.

 

Miguel showed a sex and relationship policy for learning difficulties produced by Westminster.  It includes the use of sex workers and mentions the TLC Trust – Miguel advocated for this.  Please see SHADA website for policy documents.

 

Tuppy reported on a radio phone-in that she did with Asta Philpott – a disabled campaigner.  Unfortunately Asta said that prostitution is illegal, as did an article in Disability Now…

 

Anji from SENSE also reported on her lack of success in campaigning against the Sexual Offences Act.  The Act means that the deaf and blind people that SENSE works with are not allowed any hand-on teaching any more.

 

The significance of this is illustrated by a young man who was trying to masturbate but injuring himself in the process.  Sense wanted to develop a teaching program to help him learn a better technique but are now unable to do this legally.

The Home Office said that only a small minority would be affected and that no change would be made.  However there may be others also affected, such as people with learning difficulties.

 

Sense now has a new chief executive so it is unclear as yet whether this will continue to be actively pursued.

 

 

5. Development of the ‘Sexual Respect Toolkit’ – Alex Cowan and Tuppy Owens

 

Filming has started for the toolkit, and some took place at the meeting.  This includes a disabled person talking to a health professional and then to a peer.

 

GP’s have said they need to identify with people on the DVD which will be part of the tool kit.  Tuppy said she doesn’t know any ‘ordinary’ people to film and would be grateful if anyone who knows someone in this category who may be willing to be part of the DVD to let her know.

Also need a wider range of people with disabilities, such as someone with a hearing impairment.

 

The tool kit has evolved – trying to get it into as many formats as possible.  This will  include subtitles, to ensure it is accessible to as many people as possible.

 

There will be 2 pages of concise information for GP’s including signposting for where to get more information.  There will also be a CD included from interviews.  There may be 2 versions of the CD produced – a shorter one for health professionals and a longer one for those who would like to know more.  So far the information has been informative and inspiring.

 

The focus of the toolkit is to give solutions.  Health professionals need to ask questions to give people space to raise the issue of sex and sexuality.  One of the aims of the toolkit is to give health professionals more confidence in doing this through providing tools and resources.

 

The Sexual Respect Toolkit is not only for disabled people – aim is to encourage health professionals to bring up the issue with anyone.  It is hoped that sexuality will be a part of an everyday consultation with the GP, for example posters in the GP surgery saying it’s OK to talk about sexual problems.

 

‘Respect’ is the key to addressing different cultural needs.

 

Example of sexual respect in practice – Sue Lennon, Macmillan Nurse with 20 years experience has also trained as a psychosexual therapist.  She described her work, and was filmed after the meeting for the toolkit.

 

Sue works in the field of urological cancer, mainly with men.  She acknowledges that many health professionals find it difficult to address sexual issues, and fought to get a sexology service for cancer patients.  She has trained colleagues in how to ask questions and how to manage the answers.

 

One of the long term effects of cancer treatments is impact on sexual function.  A ‘distress thermometer’ is used as a tool to identify areas of distress in relation to side effects that each person is experiencing.  These are grouped for example into physical and sexual side effects.  Sue is trying to get health professionals to address sexual difficulties if they are in the client’s top 3.

The PLISSIT model is used to raise awareness of referral pathways and who is best placed to deal with the situation.

 

Particular areas that Sue is interested in are:

 

She is making progress but there are lots of barriers.  An example of the need for such work is a woman who had both her vagina and rectum removed 15 years ago had never been asked about the impact on her sexual identity.

 

6. We split into two small groups to discuss spasms and spasticity, and issues which came up with the freedom of information survey

 

Spasms and Spasticity

This group discussed the pro’s and con’s of the ‘Intimate Rider’– some found it worked well.  Others suffer from spasms and found problems with stability.  It would be helpful if people could be assessed for their suitability for using the rider before buying it.   Spokz People would like to develop this service alongside their tailor-made products.

 

For individuals within a couple who have different disabilities and different needs, an aid which help with positioning electronically and reduce fatigue would be helpful.

 

Difficulties with safety especially if no sensation in the genital area.  Would be good to be able to try out sex aids before buying them to see if they are suitable, however Spokz mentioned this is very difficult because of hygiene reasons, though they do have demo aids for people to look at.

 

ACTION POINTS

 

 

Freedom of Information Survey and issues arising from it

It was first noted that the Sexual Offences Act is badly drafted, with a poor definition of mental impairment and is not clear with regard to the needs of care workers.

Miguel began the conversation talking of the need to mainstream the issue.  Securing linkages to pioneering authorities, such as the tri-boroughs (Hammersmith and Fulham, Kensington and Chelsea and Westminster) would help advance policy shaping.

In this context, the possibilities opened up by accessibility legislation should be explored.  Miguel and Adam promised to co-produce a guide to accessibility.

Lorraine urged the importance of getting a foot through the door with liberal and supportive councils, to be collaborative and not confrontational in dealings.

Jennie Williams spoke of the need to train staff, service users and parents in parallel.  Warning of the dangers of institutionalisation, she said training is the only way to begin the process but budget cuts threaten any advances.

In addressing the needs of service users and overcoming institutional prejudices to sexual self-expression, Greg Sams said the benefits of vitality, esteem and pleasure gained from the gratification of sexual desires should be spoken of frankly.

Miguel said religious and cultural barriers would have to be acknowledged and addressed and the danger of desensitising children was raised.

Partnership boards, joint local government and NHS bodies overseeing health and social care functions should be targeted and influenced.  In particular, the commissioners of such boards are hugely influential and there’s a call for presenting the sexual respect toolkit to boards as a way of raising the issue of sexual health and expression on the agenda.

Case Studies:  it was disclosed that Dorset Council has policies but that the writing up of scenarios involving personal assistants would be helpful, although the Westminster’ adult’s personal sexual and relationships policy will include such ones in the next review.  The target audiences for such material include adult social service professionals, healthcare professionals and disability groups.

It was felt that the publication, pulling together policy, the status of the law and what is currently permissible and wider issues should use language easily understood and respectful of the health professionals it was aimed at.  However, a fellow contributor made the case it should also be accessible to non-health professionals, the general public and disabled people and signpost as many sources as possible.

This suggested the compiling of different publications for different audiences since some issues, direct payments among them, would have to be couched from different user and provider viewpoints.

However, this also suggested an online resource allowing people with different needs and interests to click on to the pages and information sources that met their needs.  Such an online focused strategy would necessitate the publication of a two page flyer and perhaps a CD with links to resources.

Miguel commented that it should be presented as a safeguarding issue in order to secure parental buy-in.

Advancing would be an organic process and should take on board the fact nothing is currently set in stone in this area.

The Esme Fairbairn Trust, it was noted, need partners and it was stressed that meeting and working together might be the only way that the educational project could be advanced.

Other funding issues focused on the need to get a celebrity endorsement to raise profile.

ACTION POINTS

 

 

  1. 7.      Updates from members

The plan is to develop a leaflet based on the theme at each meeting – next one will be Spasms and Spasticity.

  1. 8.      Possible topics for future meetings

-          breathing difficulties, catheters, mental health, sex and medication, body image,  S&M, hearing impairments.

 

9. Venue, date and focus for next meeting

 

The next meeting will be on Friday October 7th from 11am to 4pm

 

Topics for discussion to be decided in near future.