Promoting Human Rights
The importance of relationships has really come to light over the past year, with many people isolated and having to stay connected in new ways during national lockdowns. Social isolation was already a reality for many people with learning disabilities and mental health conditions. For many, this has been exacerbated by the pandemic, with community activities and groups cancelled and the shift to meet and network online instead of in person.
At Advance, we understand the importance of relationships and especially with existent inequalities having been exacerbated by the pandemic; this is a topic that we are specifically focussing on.
The human right to respect for private and family life applies to everyone, regardless of ability, gender, sexuality, religion or race.
We are all entitled to form and enjoy relationships and it is human nature to have desires and sexual urges.
People with learning disabilities or mental health conditions should be encouraged and appropriately supported to enjoy and explore these rights.
Support staff should feel prepared and confident to provide high quality support around this subject so that neither they nor the service user are vulnerable. Everyone is entitled to make mistakes and unwise choices and subsequently to learn from them. This applies to any individual who has mental capacity to make choices around relationships and sex.
Advance provides support services to adults with learning disabilities and/or mental health conditions in multiple regions across England These services range from minimal support to live-in care, according to the needs of the individual.
Many of these services are registered with the Care Quality Commission which has recently published a report calling for a clear and proactive focus on supporting people who receive care around their sexuality and relationships.
Until recently this subject remained untouched and continues to be a taboo in the sector and society in general.
With this in mind, our Quality Improvement and Customer Engagement team decided to look into ways in which Advance can further empower staff to support individuals with learning disabilities and mental health conditions around their sexuality and relationships.
The aim of this work was and continues to be to break the taboo, reduce avoidable incidents and encourage openness and positive experience.
Current situation in the sector
Over the last five years the subject of the experience of sexuality and relationships of people with learning disabilities has received increased attention, most publicly after a report from Dr Claire Bates at Choice Support (https://www.choicesupport.org.uk/about-us/what-we-do/supported-loving/what-is-supported-loving). The report led to the creation of the network Supported Loving, which campaigns to highlight the importance of good support for people with learning disabilities to form and maintain relationships.
The network also provides a toolkit for people seeking advice on the subject, covering a range of topics, and signposts to other useful events and resources. This is a toolkit that Advance has contributed to – with one of our Regional Housing Officers sharing her insight to providing secure homes for people who want to live with their partners. Our Customer Engagement Manager also ran a webinar as part of the Supported Loving campaign.
In terms of breaking the taboo in the sector and more widely, Supported Loving is just a starting point. The subject is now being recognised more widely as a priority by care providers. Until this point there has been very little concrete guidance and structured support around the topic of sex and relationships for support workers.
As a result, support workers have often found themselves having to take initiative and decide how best to provide professional support around this topic. Not everyone is confident or comfortable addressing what can be complex topics of conversation with someone they are supporting so, without clear guidance and support, not every support worker will take the same approach. These different attitudes and levels of confidence are reflected in how different support workers will choose to support someone around their sexuality or relationships.
The barriers and challenges faced by people who have a learning disability and want to pursue intimate or sexual relationships often include the following:
• Social isolation is common, meeting people is difficult
• Lack of adequate relationships and sex education: less opportunity to develop skills and knowledge to develop healthy fulfilling friendships and relationships and to understand and explore their own sexuality
• Lack of privacy
• Balance between risk and rights for people with a learning disability is often biased towards restricting their choices [Adapted from Mencap; Sexuality and relationships - What we think]
At Advance, we are committed to this topic and see it as a great opportunity to work in partnership with both customers and their circle of support. The project work of our Quality Improvement team involved a wide range of research before deciding on any action plan.
Encouraging proactive action and empowerment at Advance
In order to decide how best to empower Advance support workers to support our customers around their sexuality and relationships, the Quality Improvement team decided to gather as much information as possible directly from customers and support workers.
This involved an anonymous online survey, attending team meetings and analysing incident reports. Other care providers were also contacted to find examples of best practice in the sector.
The aim was to obtain an honest and holistic understanding of how staff experience supporting the sexuality and relationships of Advance customers.
And so, all support teams from different regions and different types of schemes across the organisation were encouraged to take part in order to make sure the Quality Improvement team knew exactly how to develop the project.
At Advance, every 3 months the Executive Board along with the Quality Improvement Manager meets to discuss any safeguarding concerns or serious incidents. As an external figure, Pete Morgan chairs these quarterly meetings and holds the board accountable. He made the following comments about this project:
‘An awareness of our sexuality is central to our perception and understanding of ourselves; enabling our customers to safely explore, acknowledge and express their sexuality has to be a core component of the care and support we provide to them.
This Project has involved customers and staff working together as it recognised the difficulties it raises for both groups.
The resulting recommendations and action plan are an important step in developing an evidence-based approach to removing the taboo about including issues around a customer’s sexuality in their care and support plan.
They will enable customers to address their sexuality safely in a way that respects their wishes and feelings while safeguarding staff from allegations of inappropriate behaviour by maintaining the boundary between personal and professional relationships.’
What we learnt from the research
In all the discussions and survey responses it was clear that Advance support workers are keen to provide high quality support and acknowledge the rights of those they are supporting. Sometimes they lack the guidance, training, educational resources and information to do so with confidence. When confronted with a situation involving a customer’s sexuality or relationships (or desire of), staff often have to take initiative alone and are concerned about accountability and risk.
These findings were really helpful in making recommendations for the future of Support at Advance and in shaping the steps to take in the next phase of the project.
The research also brought many positive stories to light and gave the Quality Improvement team some valuable examples of approaches to this topic which had been effective in providing high quality support and positive experiences.
The research also presented some common challenges for customers and support staff and this gave the project some clear focus areas to address.
These challenges include:
- Risks of dangerous use of the internet (pornography, vigilante groups, talking to strangers)
- Customers using language inappropriately (not having the appropriate language/ using sexual language in defamatory way)
- The need for sexual health and relationship education
Education is a key theme in this project as we know it is one of the most proactive ways to approach the subject of sexuality, intimacy and relationships.
When looking at past incidents linked to this topic that support workers had recorded on our online system, we considered them from an educational perspective and looked at how future incidents could be used as conversation starters.
One organisation is working regionally, in the South West, to provide that opportunity for education. Some of our customers in that region attended a sex and relationships course designed specifically for adults with learning disabilities. We will work to research similar initiatives happening near our schemes and signpost our support teams to their resources and opportunities as we know the value of them and how beneficial they can be.
Finally, the survey also showed common themes around three key questions which can be seen below. These themes have been essential in establishing the recommendations and action plan at Advance.
All of these points are being taken forward and will be acted on by Advance, with the supervision and planning of our Quality Improvement Manager.
As a result of our findings we have:
- Published clear guidance for support workers on topics related to sex and relationships
- Adapted support planning to incorporate the individual’s preferences
- Signposted to other organisations and provide clear educational materials to staff and customers
- Introduced and will keep developing specific sex and relationships training for support staff with significant input from customers
The global pandemic has inevitably affected the roll-out of this work, however we have written a clear guidance document, with input from support workers and managers based on real life experiences. At Advance we know that every customer and every relationship is unique and that there is no one solution or approach for all.
So, we have come up with a step by step checklist for support staff to use when faced with a challenging situation. This ensures a thorough and proactive approach even with the most uncomfortable of topics.
We have additionally written a case study booklet that covers a full range of situations, inspired by reported incidents at Advance. It uses the above approach of Ask, Check, Do to illustrate how best to support people in any given situation, no matter how challenging or sensitive. The case study booklet promotes proactivity and empowerment for both our customers and our staff.
These case studies have already started to be incorporated into existent training modules in order to start conversations and reflection amongst staff.
We’re excited about the future of this project and will publish updates of all the developments. If you have any queries, questions or comments you can contact our Quality Improvement Manager, Catherine.Jones@advanceuk.org.