Share your story
One of the most meaningful ways to inspire support is by sharing real-life experiences from the children and families we care for
Share your story
One of the most meaningful ways to inspire support is by sharing real-life experiences from the children and families we care for
Giving your consent so we can tell the stories of the children and families we support
As a charity, we rely almost entirely on public donations to continue our work. One of the most meaningful ways to inspire support is by sharing real-life experiences from the children and families we care for.
If you’re supported by Helen & Douglas House and happy to share your story (which may be shared in the ways listed), we would be truly grateful, though there is absolutely no pressure. We strongly encourage families to discuss this together, so that children and young people, including those under 16, are involved in the decision, and everyone feels comfortable with how their story and any photos may be shared.
Examples of the stories we've shared can be found on our social media pages, or at blogs and stories.
Please use the form below to complete family story media consent. If you have previously given family story media consent and want to amend or renew your details, visit hdh.org.uk/consentfamilyrenew.
Did you know?
We gather content for your story and media throughout your journey with us. This may be over months, years, or longer, and can continue even after you leave our services.
Your stories are incredibly powerful. We value you and your sharing preferences at every stage of the process.
How we collect and store your story
With your consent, we may capture your story in different ways, including written words, audio recordings, photographs and/or videos. These may be taken at the hospice or at hospice events, or shared directly with us (such as personal photographs or written reflections). We will refer to these materials together as your ‘story media’. On signing the form, we may also ask for a photograph for reference purposes (or use one already held securely within your clinical record).
Your personal data will be collected and stored securely, and processed in line with GDPR and our Privacy Policy. Your consent will remain valid while we remain in regular contact with you and/or unless your circumstances or preferences change.
For more information check out the FAQ's
- Our printed and digital materials (e.g. newsletters, leaflets, posters) in the hospice, at events or in our charity shops,
- Our website and social media channels (Facebook, Instagram, Twitter/X, LinkedIn, YouTube),
- Local press (print, radio, online) and with approved third parties such as fundraisers or partner organisations,
- Internal communications, such as staff training, team briefings, or internal reports and updates,
- Family communications, such as newsletters or updates shared with other hospice families,
- Research and evaluation purposes, to help us better understand and improve the care we provide.
If you require a printed copy of our consent form, a copy in an alternative language or have any other queries please email marketing@helenanddouglas.org.uk.
Share your story like mum Leanne did by telling Lily-Mae's story
"For nearly nine years, my life was dedicated to Lily-Mae and making sure that she was happy and safe. The way that she had passed away was just so quick. There was no time to prepare anything."
Leanne, Lily-Mae's mum
With our help and support, Lily-Mae was able to get the support and care she needed during her short life. Her mum Leanne got the support she needed as a carer, and then at the end of her daughters’ life. This care continues even after a child has died, as our Family Support and Bereavement Team have been working with Leanne since she lost Lily-Mae providing her with bereavement support.
Family Story Media Consent FAQ's
What are the consent options?
Full consent: You are happy for Helen & Douglas House to use your family's story, photographs and other media across all of our communications, with no restrictions.
Limited consent: You are happy for us to use your family's story, photographs and other media, but with specific preferences or restrictions. For example, you may only be happy for content to be shared in certain ways or channels.
No consent: You do not wish for your family's story, photographs or other media to be used by Helen & Douglas House. We will record your preference and will not use your content without contacting you again.
You can also change your consent preferences at any time by contacting us.
Who can give consent?
Consent for family story media may be given by a parent or legal guardian for a child under 16, or directly by a young person aged 16 or over, where they have the capacity to make this decision. Where a young person aged 16 or over does not have capacity, consent must be provided by their parent or legal guardian.
How long is consent valid for?
If we have not been in contact with you for more than three years, we will contact you to review and refresh your consent and preferences. If your consent lapses, all future use of your story media will be paused until renewed.
If you have previously given family story media consent and want to amend or renew your details, visit hdh.org.uk/consentfamilyrenew.
Note: This does not apply to any materials already shared, which may only be removed where requested and where possible, e.g. from our own channels. Removal from third‑party or printed materials may not be guaranteed.
Will you contact me each time our story media is shared?
If we have relevant consent, we will not contact you each time your story media is captured, used or shared. However, your story media will only ever be used in line with any permissions and/or exclusions recorded. We may be in contact if we require additional information and/or wish to use your story media in an alternative way that is not already consented.
If I say no to consent, will it affect the care I receive?
Your family story media consent and preferences will not affect the care or support you receive from Helen & Douglas House.
I don't want to share our story, so why do I need to sign the form?
The Family Story Media Consent Form allows you to tell us how, or if, you'd like your family's story, photographs and other media to be used by Helen & Douglas House.
The form gives you the option to provide full consent, limited consent (with your preferences or restrictions clearly recorded), or no consent. Having a record of your preferences helps us respect your wishes and avoid asking you again unnecessarily in the future.
Sharing your story is entirely your choice, and you can update your preferences at any time.
What if I change my mind or my details change?
If you have previously given family story media consent and want to amend or renew your details, or wish to withdraw consent, visit hdh.org.uk/consentfamilyrenew.
You can also contact us at marketing@helenanddouglas.org.uk.
I have a question, how do I contact the team responsible for managing family story media consent?
You can contact us at marketing@helenanddouglas.org.uk.
If you have previously given family story media consent and want to amend or renew your details, or wish to withdraw consent, visit hdh.org.uk/consentfamilyrenew.
How will you store my data?
Your personal data will be collected and stored securely, and processed in line with GDPR and our Privacy Policy at www.helenanddouglas.org.uk/privacy. Your consent will remain valid while we remain in regular contact with you and/or unless your circumstances or preferences change.
What does it mean to opt in or out of the family communications including news, updates and service information?
Where can I find a version of the form to print?
Consent form: Available here
Consent leaflet: Available here
We can’t do this without you
Families like yours, who come to Helen & Douglas House, depend on our care and support us. We are here to help them face everyday challenges during their children’s short lives and to cope with living with a child with a life-shortening or terminal illness. By sharing your story, you will be telling supporters about the expert care and support you receive, which is made possible by their donations.