HIE Awareness & Support | Peeps Charity

HIE Awareness & Support

We’re here to help – and just as every family is different, the support people need can be different. Please don’t hesitate to get in touch with us if you need anything or have any ideas. You can self-refer by completing a quick online form here. A paper copy can be downloaded here.

If you would like any of our information in a different language or format, please do not hesitate to get in touch.

Some of the things we currently do:

Provide information

We have free parent packs, posters and leaflets (translations available) to share with NICUs (Neonatal Intensive Care Units). This means a family starting out on their journey have access to information and support from the earliest opportunity. Families may not choose to contact us straight away, and that’s of course absolutely fine, but we believe it’s important for everyone to have the choice and knowledge of what support is available for if/when they may want it.

Our packs have items in that offer a little comfort during those early days and weeks. Healthcare professionals can request packs for their unit by clicking here.

Peer support

Speaking to a mum or dad who has been through the same, or similar experience, can be helpful. We can put parents/carers in touch with one of our Peer Support Volunteers, either for a one-off chat, or more regular support. We understand that talking online (we use zoom) may feel a little too much for some people. We offer WhatsApp and email contact as well.

We’ll soon be developing our face to face peer support, as well as dedicated support for grandparents.

You can also access informal peer support via our closed Facebook group called Little HIEroes – all welcome, with a focus on the early weeks/months/years following an HIE event.

Counselling and trauma therapy

Peeps is run by parents and volunteers. We are always happy to lend an ear but we’re not trained professionals. If someone affected by HIE would benefit from speaking to a trained counsellor then we can support. Often EMDR therapy is recommended for those who have been through trauma. It stands for Eye Movement Desensitisation and Reprocessing. You can read more about it here.

We are currently supported by Re-Vibe Counselling,  Yorkshire Psychotherapy, and others across the UK.

If you would like to find out more, or register for support, please complete our short form by clicking here.

Funding for equipment

Having a little one can be expensive. If your child needs a little extra support the costs can really add up. We have allocated funds for equipment that isn’t available through the NHS. This includes, but isn’t restricted to, items like the Firefly GoTo seat or Splashy. You can apply for up to £500 towards the cost of equipment. We’re really proud to say that our funds are needs, not means, tested.

You can fill out the form online here, or download the application form here.

If you need any help completing the form or have any questions, please don’t hesitate to get in touch.

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Peeps on Twitter

A little light listening for a Saturday - a beautiful song that was gifted to Peeps by Liz explaining what H.I.E. is and sharing just some of the gorgeous families we have the privilege of being alongside #HeardOfHIE 🌻

#Neonatale #seizures and #outcomes!
- @HIE the most frequent cause of seizures, but prognosis of neonatal-onset #epilepsies was worse.
- Status epilepticus: the most predictive for adverse outcomes
@EURJPN @neo_twiter @HopeforHIE

https://www.ejpn-journal.com/article/S1090-3798(24)00007-2/abstract

Our fabulous fundraisers are up and running (see what we did there?) with their Manchester 10k support. £150 has already been generously donated and we promise that every single £ will be put to good use.

There’s time to join in if you want to be part of Team Peeps 🌻…

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