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For too long families in Northern Ireland have lived with the stigma of Huntington's disease and been deprived of the services they so desperately need.

Services for those affected by Huntington's disease are disjointed with no joint up working and a postcode lottery of care exists with specialist services, completely overstretched and largely limited to those who live in the east of the province. This means that patients and their families are left to cope on their own with symptoms getting unnecessarily worse at times leading to avoidable hospitalisations and psychiatric stays. Suicidal ideation and self-harm as well as addiction issues and family breakdown are not uncommon.

We want the Department of Health to commission the design of a regional Huntington's disease strategy and the creation of a health and social care pathway from the point of predictive diagnosis to end of life which takes account of physical and mental wellbeing, the impact of Huntington's on the whole family and is truly consistent, accessible and equitable to all regardless of where in the province they live.

We have a vision where every person diagnosed with Huntington's gets access to the same information regardless of where they live and are connected to services immediately to help them and their loved ones understand and cope with the diagnosis. They are linked to a multidisciplinary team including genetics, neurology, psychiatry, HD nurse specialist, mental health practitioners, social work, speech and language, dietitian, occupational therapist, physiotherapist and HDANI who work together to provide disease appropriate information, advice and support throughout their Huntington's journey.

Unlike other parts of the United Kingdom and Ireland, there is no opportunity for local families to engage in research or access clinical drug trials. Information about specialist fertility services to avoid passing on the faulty HD gene are not promoted and if couples do find out about PGD they need to apply for Trust finding to attend clinics in London. In the absence of a regional strategy, families in Northern Ireland are at risk of missing out on timely access to emerging treatments that others across the UK and Ireland will have access to.

We are asking you to sign this petition to show your support for Huntington's disease families and call on the Minister, Department of Health and others to commit to working with HDANI to design and deliver a Regional HD strategy and care pathway.

End the postcode lottery of care by following the link below

https://www.change.org/HDNIStrategy21

Contribute to our ‘living history’ project for Huntington’s Disease Awareness Month!

Sorcha McPhillips   Tue 23 Feb 2021   updated: Sat 01 May 2021

We are starting work on a unique project to mark Huntington’s Disease Awareness Month and we need your help!

We are collecting snapshot stories from people who are living with Huntington’s disease and who want to share what this means to them and their family.

We are building a digital space for the Huntington’s community where we will collect pictures, words and thoughts on how you feel about the way Huntington’s affects you and your family. We want to create a special shared space for people and families living with Huntington’s disease. By creating this space and allowing everybody within our community to post a message or a visual image, we will be able to create a wonderful ‘living history’ project that will help the wider world understand the impact of Huntington’s disease.

Why should I do this?

Huntington’s Disease Awareness Month is a time to raise awareness of Huntington’s with the wider public. But it is also a time for us as a community to come together, to reflect and to show our support for each other.

We want to acknowledge the unique impact of Huntington’s disease, and to help people understand the challenges that families face. Importantly, we also want to celebrate the strength of families facing Huntington’s disease together.

Our digital space will reflect all our experiences of living with Huntington’s disease. We are really excited to have a particular space that helps show the world what living with Huntington’s disease is like. Your contribution can play a part in that and help build better awareness and understanding that could help us all.

What do I need to do?

We want you to contribute to this project in a way that is meaningful to you. You can contribute as an individual or as a family. You can send us a photo, some of your own words, a poem, a drawing, or something else altogether!

We would love for you to give a small insight into your world and perhaps in particular, your family. We’ve enclosed a list of ideas below, but we would love to be inspired by your ideas!

I want to contribute, what do I do next?

If you’d like to contribute, please visit our campaign site https://hdfamilymatters.com/#contact or

email our communications team at huntingtons@mandfhealth.com.

If you have something in mind to send you can just send it on to them now, if you have a query, they will be happy to help!

Ideas and inspiration!

  • A poem about family that speaks to you - or even a poem you have written yourself!
  • A selfie with your family or support bubble
  • A message from you and your family – or even just your family name and region
  • An inspirational or motivational quote
  • A drawing or piece of art – something you have done or something someone in your family has drawn
  • A picture of something that reminds you of family/your support network
  • A quote from your favourite book that reminds you of strength
  • An old family photo
  • A new family photo!
  • An image of footprints or handprints or something that is personal to you
  • Extracts from a letter or note
  • An anonymous message of support

The list is endless as it could be absolutely anything that is meaningful to you! If what you send us isn’t quite right or is too big we may have to come back to you and suggest some tweaks – e.g. sadly we don’t have room for short stories!

Do I need to give my name?

No, absolutely not. We expect that some people will give their name and other people will choose not to. We would like to hear from as many people as possible and if you want your contribution to be anonymous you can just tell us when you send it in. If you forget to tell us, don’t worry, we will check!

How long have I got to contribute?

We will be collecting contributions up to the end of May. The website will launch on 1st May so you won’t be able to see everybody’s contributions until then.

Who will see my contribution?

Once the website goes live it will be in the public domain so anyone will be able to see it.

When you send us a contribution we will send you back a consent form to secure your consent to display it on the website, and also to ask you if you are happy for us to use your specific contribution on social media. It is entirely up to you whether you want us to share your contribution in this way. We are very grateful for all contributions and there is no obligation for you to say yes to social sharing.

What exactly do I need to send?

  • A photo file or e.g. poem directly typed onto email
  • A short caption – ideally no more than 20 words (this will appear underneath your contribution)
  • A credit – your name and region or just your name, can be first name only, or just ‘anon’ (this will also appear under your contribution)
  • Your email address just so that we can get back to you (not for publication)

Any other questions?

If you want to ask anything else at all about this project please get in touch with our communications team at huntingtons@mandfhealth.com who will be happy to help!

Make sure you’re following us on social media https://www.facebook.com/HDANorthernIreland or https://twitter.com/HDAssocNI to hear more.

We hope you enjoy our ‘living history’ project and we very much hope you will be able to take part.