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Help shape our work

Join Bliss’ Insight and Involvement Group and share your experiences of neonatal care to help shape our work.

Join the Insight & Involvement Group

Babies - and the families who care for them - are at the heart of everything we do at Bliss. By joining our Insight and Involvement Group, you’ll share your experiences of neonatal care and help us consider what babies and families need most. Together, we’ll shape projects, services, and information that truly reflect the diverse realities and challenges of neonatal care.

We can give every baby born sick or premature the best possible chance of survival and quality of life, with families who feel cared for, informed, and supported.

At times you can feel helpless in the neonatal journey, so it feels good to feel like you are making a difference when collaborating with Bliss.

Oliver, Dad to a premature baby and member of a Bliss co-creation group

What experience do I need to join the group?

You don’t need any special skills to join - just lived experience of neonatal care with a premature or full-term baby, and a willingness to share your story to help improve Bliss’ work.

The group is open to anyone with experience of neonatal care in the UK, whether as a parent, carer, family member, or friend closely involved in a baby’s care. The baby's stay on the neonatal unit could have lasted months or days - we're interested in all experiences.

Involving all voices in our work

Bliss wants every baby born premature or sick in the UK to have the best chance of survival and quality of life. To achieve this, we need to hear from a wide range of parents and carers so our work reflects the real experiences of families - especially those who are often unheard and underrepresented.

Health inequalities mean that factors like ethnicity, location, first language, disability or financial struggles can lead to unfair differences in care and outcomes. That’s why we actively welcome members from diverse backgrounds, including Black, Asian and minority ethnic communities, LGBTQ+ families, disabled people, and those experiencing financial hardship.

By sharing your experiences, you’ll help Bliss ensure our services, campaigns, and resources truly represent and support every baby, and every family who needs us.

I feel that being a representative of my community will allow others to be confident in being able to speak freely on giving birth early and break down cultural barriers.

Wasim, Dad to a premature baby and member of a Bliss co-creation group

Interested in joining the Insight and Involvement Group?

Complete our online form and we will be in touch.

Join today

What opportunities does the group receive?

The Insight and Involvement Group will receive opportunities such as:

Reviewing and informing new Bliss information for parents and carers
Joining co-creation groups to develop new Bliss services, tools, or resources
Ensuring Bliss communications are parent-focused
Testing website features
Completing surveys on neonatal care and family experiences
Attending events to share your lived experience of neonatal care

We sometimes share relevant opportunities from external researchers and healthcare professionals too.

How does the group work?

We’ll email you about opportunities, clearly noting if they’re from Bliss or an external partner.
We may contact you directly about projects that match your experiences shared in your sign-up form.
Some of the opportunities we post may not apply to you, but you can get involved in as many or as few of the opportunities as you wish.
Usually you'll express your interest in the opportunity, either by emailing or completing a short form.
Most opportunities happen online at convenient times.
We'll ask for your feedback as it helps us improve our involvement opportunities.
We’ll always update you on the outcomes of projects you take part in.
Bliss offers thankyou vouchers for many activities, and we encourage external partners to offer payment where possible.

The campaign has given me a sense of fulfilment and confidence to talk about my experiences without feeling guilty and alone.

Anonymous feedback from a parent involved in co-created a Bliss campaign

How will we support you?

We understand that sharing your experiences - whether about neonatal care or other parts of your life - can sometimes be emotional or bring up difficult memories. That’s why we create safe, supportive, and non-judgemental spaces where every experience and opinion is valued and respected.

You can step back from an opportunity at any time if it feels upsetting or if you no longer wish to take part. Our Support Team is always here for you - just email [email protected] whenever you need support.

Current involvement opportunities

Opportunities organised by Bliss

Help us improve Bliss' website!

We’re testing changes to the Bliss website and would love your feedback. The aim is to make sure the site is easy to use and helpful for anyone looking for information or support.

What’s involved: You’ll complete four short tasks using a trial website menu. This helps us see how easy it is to find information. This is not a test of you – it’s a test of the website.

Time commitment: Around 20 minutes or less. Take part online at any time between 23 April and 8 May, at a time that suits you.

Who can take part: Anyone! It doesn’t matter when your neonatal experience took place. Please feel free to share this with friends or family too – the more responses we get, the better. We want the website to work well for every kind of family, whether you’re a mum, dad, partner, grandparent, or someone who has supported a baby in neonatal care. Your perspective could really help.

We particularly welcome responses from people from minority ethnic backgrounds, dads, and non‑birthing parents, as we currently hear less often from these groups.

Everyone who completes the task can enter a prize draw for a £50 shopping voucher.

Click here to complete the task: https://t.maze.co/525042026

Opportunities organised by researchers or other organisations

Bliss has not organised the following opportunities. External researchers and organisations separate from Bliss run them. You'll work directly with that organisation when taking part.

Bliss is supporting a researcher at the University of East Anglia who is undertaking research to explore and begin to understand the experiences of parents from minority ethnic backgrounds whose baby has died on a neonatal unit.

The aim of this research is to understand their experience and contribute to understanding the needs of parents to help inform care and bereavement support. Involvement in this project takes the form of one to one interviews online with the with researcher, lasting between an hour and an hour and a half. Questions and topics may include experiences of hospitalisation, experiences of bereavement care and the role and impact of cultural and ethnic identity.

To find out more, please email Penny Curry on [email protected]