Many people with ME fear hospital and other medical visits with good reason – the long waits sitting upright, the bright lights and the noise can all make our conditions worse. In addition you may be concerned that staff do not understand your health condition and so do not make appropriate allowances or change their practices to support you.
It can be very difficult to advocate for yourself in these situations. As well as having a friend or someone else to support you, it can help to be prepared.
To help you prepare there are several documents you can read yourself, and complete ahead of time to share with your medical team.
ME Hospital Pack
A group of UK ME charities put together this excellent hospital pack of information to take into hospital with you. You can complete sections ahead of time with your own specific details and needs.
ME and Anesthetics
Because people with ME (and related conditions such as Postural Orthostatic Tachycardia Syndrome) can have unusual reactions to anaesthetics the ME Association has worked with the Royal College of Anaesthetists to produce a leaflet for patients and anaesthetists involved in the care of people with ME.
You can read more about the leaflet and why it was developed and even listen to a podcast about it.
NHS Reasonable Adjustment Flag
The Reasonable Adjustment Flag is a national record that shows a person needs accommodations and may include details about their impairments and necessary adjustments.
https://digital.nhs.uk/services/reasonable-adjustment-flag
Dentistry
The ME Association has a page about dentist visits and people with ME which you may also find useful.
Consenting to medical treatment
An ME advocate and barrister in the UK, Valerie Eliot Smith, has put together a legal document that allows people with ME to limit their consent to medical treatments. She says:
I was recently asked by a UK ME advocate, Eleanor Rosen, if I could help with drafting a Limitation of Consent form. This form would create a document which ME (or “ME/CFS”) patients could prepare in advance and take with them to medical appointments which they anticipate might be challenging.
The result is her page of guidance and a notice you can complete and sign ahead of doctors appointments. You can also ask your GP to keep this notice on your medical records.
For other legal matters related to healthcare and ME please visit our legal issues page for more details of legal power of attorney documents etc.
Cambridge M.E. and L.C. Support Group, CBME 