Welcome to ‘My DM Support Plan’ page
Here you will find information and downloadable templates to help you create your own, individual to you, Myotonic Dystrophy Care and support folder!
Please reach out if you have any questions.
Check list for your folder:
- An A4 size, sealable folder
- A pen
- Plain paper for notes
- CureDM downloads
- Your NHS letters/appointment reports
- Care guidelines
Having an up-to-date and ready to go DM support plan folder,especially when you or a loved one have a complex and variable condition such as Myotonic Dystrophy, is really important.
People living with rare diseases will often find themselves educating health care professionals, simply because it is still very unknown. Having easy to read, personalised, and up to date information at your finger tips can really help you to advocate for yourself, and can be vital in all situations.
Keep the folder in an accessible place, making sure it is easy to access in an emergency.
Myotonic Dystrophy is described as ‘the most complex condition known to medical science’ – simply because it is so variable and unpredictable! No two people are affected the same so having a personal folder of information can make it easier for both you, and the clinical professionals, when in routine appointments or emergency situations, not to mention school meetings, GP appointments, annual reviews, local authority meetings, change of care meetings…..
This will be your plan, make them as detailed as you want/need them to be, and remember, YOU are the expert in your own / your loved ones condition.
Why not check out CureDM Connect – our monthly blog HERE!
We have collated a large selection of downloadable, editable, and printable documents for you to add to your own DM support plan folder. If you have any questions, please contact us and we will be happy to help.
- Pen Picture template, with example copy of Miles’ Pen Picture
- List of personal health care professionals and contact details: template
- CAMRARE patient passport – lanyard version
- Consensus based care recommendations for DM (adult or child)
- CureDM basic anaesthetic guidelines
- MDUK neuromuscular care plan template
- MDF: A guide to DM for school professionals
- International Myotonic Dystrophy Awareness Day poster
- Could it be Myotonic Dystrophy? poster
- Myotonic Dystrophy at a glance poster
- MDF clinic planner for notes
Things that you can also include:
- Your genomics lab report – you can request this from your genetic counsellor or consultant.
- Copies of all recent clinic letters
- Copies of ECG’s and blood results so you always have your baselines to hand
- If you have a specific health conditions or learning disabilities you can add information about these too, e.g. Autism, ADHD, etc.
- Regularly review your support plan documents annually or sooner if you feel like the information needs to be updated.
