Donor Conception is a life-long intergenerational process with far reaching social implications. Donor conceived people and those affected by donor conception practices face unique challenges and require support and resources to navigate these challenges.

“Support” section in the DCUK Consultation

Learning you are donor conceived often creates a lot of questions without answers causing strain on mental health and well-being. This chapter will not spend much time demonstrating why it’s important for donor conceived people to know their genetic origins as current regulations and attitudes in the UK encourage ‘openness and transparency’ but will instead focus on the support needs of DCP and those affected by Donor Conception practices in the UK regardless of the era in which they were conceived.

As a community we are already doing a lot of this ‘support’ really well. Time and time again during the consultation process people mentioned how much they value the peer-to-peer support available in the DCR Community. Signposting needs improving (which will be helped by the creation of a new peer-led organisation) so that all DCP, historical Donors and others intergenerationally affected by DC practices can find the help, support and resources they need easily. The points worth noting here are that over one third of participants who answered the short survey found it either difficult or very difficult to find the support/resources they needed to manage their personal DC experience. At the other end of the spectrum another third found it either very easy (5%) or easy (25%). We also undertook an experiment ourselves which can be found in Appendix A to demonstrate a typical user journey from common online search terms. Many of the participants spoke of not knowing the correct terms such as ‘donor conceived’ which also acted as a barrier to support. For example, prior to the 1990’s donor conception was widely known as Artificial Insemination via Donor (AID).

Two of the main threads that came out of the consultation process around the subject of support were to:

• Embed a strong mental health presence in the new organisation. This is also considered the most likely route to funding.
• Expand on the support offer available.

We are hearing that this community needs something systematically different. Whilst still recognising the value of 1:1 counselling; we have ambitions for a raft of multidisciplinary tools, resources and peer-led events both virtually and in-person.

Talking therapies alone may not be enough to help people heal deep emotional wounds and a more holistic approach may be necessary. Some examples that could be integrated into both clinical and self-care practice include meditation, walking, breath work and creative practices such as writing, drumming, dancing and painting.

On the other hand:

Talking therapies may also only be required short term with support looking different longer term.

Looking first at those who may need a more dynamic approach to healing, The Liverpool Women’s Hospital website states that the DCR Counselling service was set up ‘in recognition of the complex emotional and psychological issues which arise from new findings about your origins and the DNA testing process’.

Exploring deeper into what these complex emotional and psychological issues might look like, a common definition of psychological trauma is:

‘A normal reaction to an abnormal situation.’

Many aspects of the DC experience can be categorised as traumatic experiences.

When we ask the (left hand) logical part of the brain to tell their story, we are asking them to go to the wrong side of the brain. Trauma is stored visually and viscerally and to access this trauma right hand brain modalities must be used (Adamson Holley 2021).

It is possible to treat someone with trauma and never say the word ‘trauma’ but it is imperative that trauma research is considered when planning for support needs for DCP and others affected. It all comes down to survival response in its simplest terms. A lot of these behaviors are rewarded in UK society. We all live in a society where we are not supposed
to talk about traumatic things happening. Recognising the call to ‘Keep Calm and Carry On’ causes us to minimise a problem and normalise certain experiences. The brain and body will have made these adaptations but is that serving us well?

It needs to be made as easy as possible for people to find support and community from people who have lived experience. It can be lonely and isolating to be donor conceived when you’re searching for answers, for closure, for new beginnings, for acceptance, for our experiences and feelings to be validated. The impact of rebuilding an identity after a discovery like this also needs acknowledgement. It is lifelong.

‘I am one of the fortunate ones but even in the best-case scenarios there is so
much grief’

‘Just because we may have had a nice life before our surprise, it does not make
the surprise any less painful or confusing or whatever we may be feeling’

There needs to be an acknowledgement of the need for a necessary mourning period to cleanse the mind and to make room for whatever may come- A space where all of a DCPs emotions are valid and their experience is not minimised or eclipsed by the context of their parents’ infertility or their desire to have a child. This is why a richer community with deeper connection and greater resources is required. Recipient Parents may not be able to support you if they are in denial, or friends might not understand the gravity of your situation, you need to be able to build that ‘back up’ support with people who DO want to understand your
struggle. DCPs and those affected by Donor Conception practices in the UK need to share what’s happened to them and reach out to others in the community. As one consultation participant puts it,

‘Although we have different responses to being DCP, almost none of our experiences are without some hurt or sorrow. Especially if you already struggle with mental illness. We just have to KEEP GOING. Our identities are shaken like an etch a sketch, but with time, who you are and who you want to be will emerge again. We all have identities outside of our hereditary and also an inherent value and a right to be here and belong.’

For those who don’t believe they require counselling or other therapeutic treatment they may still find huge value in a peer-led support community made up of those with the same lived experience and those who have walked this path ahead of them.

Creating and maintaining the infrastructure for a safe space and helping people feel seen and heard is invaluable to guarantee stability for the Donor Conceived UK community moving forward. This infrastructure needs to be future proofed regardless of who is running the DCR service which has already been passed between various providers in its time.

What should be the aims of peer-led support?

We talk about this new organisation being peer-led but what should be the
AIMS of peer-led support? As a community, it is believed they could be:

• Re-centering the DCP Communities voice, rights and stories
• Creating space for the range of meanings that people can put on genetic connections
• Champion the choice of whether knowing one’s genetic truth matters to DCP
• Ensuring feelings are not minimised to protect other’s agendas, shame or fear
• Being a stand for others
• Sharing DCP experiences of healing with others
• Reclaiming all that you are and reconnecting with your own roots of belonging

Some of the above aims straddle the pillars of education and advocacy, which naturally happens when support involves empowering, championing or amplifying.

What does Peer-led support look like?

It is also important to outline what peer-peer support looks like on a practical level too. Some of these things are already happening. It is also imperative that support is available and easy to find for historical donors, and others affected by Donor Conception practices.

What we already do:

• Responding to email enquires/ speaking on the phone. That might be advice, support, liaising with LWHT, HFEA or signposting.
• An active and supportive Facebook group
• In person meetings twice a year (currently very London centric)

To expand on the support offer available:

• People’s need for counselling is relatively small. What people have told us is that they need access to experienced people that can walk alongside you
• More access to regional and virtual support groups that focus on emotional support, sharing experiences, education and practical activities. To include catering for intersectional DCP groups (LGBTQ+, infertile DCP, Black or BIPOC DCP etc..) Melissa Lindsey in the US seems to be a good example of this
• Under 18s youth support PEER-led (co-led with DCN). It is also noted that the younger generation will look for support in social media spaces, so we need to increase presence on more platforms
• Create a clear calendar of events and opportunities to engage and connect. For example, book groups, healing events and socials.
• Creation of ‘buddy scheme’ for new members (or anyone really)
• 1:1 support ‘mentoring’ and ‘befriending’ (opportunities to meet with someone to talk about how you are feeling or set goals/ intentions
• Connect with existing organisations such as humanlibrary.org, befriending.co.uk, nationalvoices.org.uk for collaboration opportunities that enable human connection.
• Produce an approved therapists directory
• Produce an approved resources directory

Support Recommendations

• The existing Facebook group transitions to being a Donor Conceived UK Community support group, with the knowledge that being a registrant on the DCR is part of the service providers ‘offer’ available to UK DCP and historical donors and is therefore still a relevant topic of conversation in the group and remit of the new organisation.
• The DCR is advertised as a service available for Donor Conceived UK Community to utilise
• The community of DCP in the UK is now represented by Donor Conceived UK, which includes representation of those registered with the DCR but also those entitled to access information from the DSL and also those DCP able to access Identifying information via OTR from Autumn 2023. The community however will not exclude DCP conceived outside of clinics, but instead via historical ‘informal’ mediated reproduction processes that have taken place in the UK.
• An offer of future support activity as identified in this report to be led by Donor Conceived UK so that it is peer-led and not seen to be mediated by Recipient Parents
• Influence the current HFEA review into future support needs of Donors, Donor Conceived People and their families, in view of expanding the support offer available to DCUK community to ensure there is a breadth of therapeutic and impactful resources available
• Work with partners and stakeholders to improve online signposting to ensure support is easy to find regardless of the era you were born
• The ‘home’ for this community should be this dedicated organisation: Donor Conceived UK rather than a ‘service provider’, whilst still retaining links and relationships with the service provider.
• Embed a strong mental health presence in this new organisation ‘Donor Conceived UK’
• Create programs designed for people to work through to help process emotions and build resources to cope

The DCUK team are available on info@donorconceiveduk.org.uk for advice, support and signposting and you can read more about our future ambitions for support activity in our consultation document.