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.
ReSPECT: a plan for emergencies
The hospital pack helps when you can plan a visit. ReSPECT helps when you can’t. It stands for Recommended Summary Plan for Emergency Care and Treatment: a short form, agreed with a clinician who knows you, usually your GP, that sets out how you want to be treated in an emergency if you can’t tell staff yourself. You keep the form, and ambulance crews, out-of-hours doctors and hospital staff use it to make quick decisions.
It is most useful if you have severe or very severe ME, when a crash may leave you unable to speak, or to bear light, noise or being moved. It may also help if you have moderate ME with other health conditions, or your ME is getting worse. Despite its reputation, it is not just about resuscitation: having one does not mean “do not resuscitate”, and you can use it to say you want active treatment.
You could ask for your form to say:
- that you have ME, and how severe it is
- that exertion, light, noise, touch and being moved can make you much worse
- that you would prefer to be treated at home if it is safe
- that in hospital you need a single room if possible, dim light and quiet
- that you need time to answer, and who should speak for you if you can’t
- that you want active treatment, including help with eating and drinking if you can’t manage.
The NICE guideline on ME, NG206, backs several of these: it asks hospitals to aim for a single room, keep lights dim and noise low, and be careful with touch. The form has little room for detail, so ask for it to say where your completed hospital pack is kept, so staff know to look for it.
Some things to be aware of:
- It is often used near the end of life. Locally, ReSPECT is presented as a way to plan care as people become unwell and at the end of life. If that is not why you want one, say you are asking for an emergency plan.
- Check the priorities scale. The form has a scale running from prioritising longer life to prioritising comfort. Make sure it reflects your views.
- CPR is a clinical decision. Doctors don’t have to offer cardiopulmonary resuscitation (CPR) if they believe it wouldn’t work, but they should normally explain their decision to you. Having a disability should not affect it, and if you disagree you can ask for a second opinion.
- It is not legally binding. It guides staff but does not bind them. An Advance Decision to Refuse Treatment, or a Lasting Power of Attorney for health and welfare, does carry legal weight: see our legal issues page.
- Keep it up to date. Ask for it to be reviewed whenever your health changes.
Checklist for your conversation with your GP
Before: ask your surgery for a ReSPECT conversation, and for a phone call or home visit if travelling would make you worse (NG206 asks services to offer these). Ask for a longer appointment, or two short ones. Choose someone to support you and to speak for you in an emergency. If you can, send short notes in advance: your diagnosis and severity, what makes you worse, what helps, food and drink needs, medicine sensitivities, and treatments you would or wouldn’t want.
During: say you want an emergency plan, unless you also want to plan for the end of life. Make sure the form records your ME and how severe it is, with your energy and sensory needs under what matters to you. Be clear where you stand between longer life and comfort, and ask what the CPR recommendation will be, and why.
After: read the form and ask for any corrections. Ask your GP to note on your record that you have one. Keep it somewhere easy to find, take it with you if you go into hospital, and tell your family or carers where it is.
Find out more from the Resuscitation Council UK’s ReSPECT for patients and carers, and Arthur Rank Hospice’s ReSPECT in Cambridgeshire.
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
ME and Anaesthetics
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.
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.
