The Need for Lasting Power of Attorneys and Living Wills for People Living With M.E


I started a conversation on X and Facebook last month about Lasting Power of Attorneys and Living Wills that seemed to resonate with quite a lot of people living with Myalgic Encephalomyelitis. The topic is particularly pertinent right now as the absence of a Power of Attorney is an issue in at least one of three cases of people living with severe M.E. who are inpatients in NHS hospitals.

The post:

‘Words I said to my elderly parents last night ‘If I ever deteriorate to very severe and have a horrific experience in hospital, I give you permission to shout/make noise/protest/ complain to GMC/take legal action ASAP.’ I suggest other #PwME give loved ones the same directive.’

I went on to later post:

I am well aware that there are #pwME who have no-one to designate a Power of Attorney, my point here would be that often, without a POA/living will, next of kin/spouses are ignored.

These posts are the inspirations for this blog as, judging by the comments on these posts, it is an issue that concerns many people with M.E right now AND their support networks. To be clear, this would be less of an issue if there was a NHS protocol or policy relating to treatment and care of severe M.E. (or any severity of M.E) within NHS hospitals. Click here to see my open letter/campaign for a NHS protocol. Unfortunately, despite ME Foggy Dog’s sister social enterprise Stripy Lightbulb CIC’s best efforts, many in the healthcare profession still do not know enough about M.E to be able to make safe clinical judgements particularly where severe M.E is concerned. As most people living with M.E are aware, we all have some degree of risk of deterioration to a severe level of severity and so getting a Power of Attorney or Living Will in place is important for many. Even if you believe you will never deteriorate to a severe level, it is a safety blanket in the worst of circumstances.

I’m going to concentrate on the UK in this blog but I am confident that similar processes are available all around the world and I would encourage people with M.E (with help from support networks) to invest time and energy getting these legal processes in place.

Here is a bit of information about Power of Attorney and Living Wills.

Lasting Power of Attorney (LPA)

I’m going to provide some key extracts below (from  but more information can be found on the website

A lasting power of attorney (LPA) is a legal document that lets you (the ‘donor’) appoint one or more people (known as ‘attorneys’) to help you make decisions or to make decisions on your behalf.

This gives you more control over what happens to you if you have an accident or an illness and cannot make your own decisions (you **‘lack mental capacity’).

**False claims of ‘lack of mental capacity’ have been made about severe M.E patients in recent months by NHS staff. This is why many people living with M.E are looking to set up a LPA.

There are 2 types of LPA:

  • health and welfare
  • property and financial affairs

You can choose to make one type or both.

Who can be your attorney

Your attorney needs to be 18 or over. They could be:

  • a relative
  • a friend
  • a professional, for example a solicitor
  • your husband, wife or partner

You must appoint someone who has the mental capacity to make their own decisions.

Your attorney does not need to live in the UK or be a British citizen.

If there’s more than one attorney

If you’re appointing more than one person, you must decide if they’ll make decisions:

  • separately or together – sometimes called ‘jointly and severally’ – which means attorneys can make decisions on their own or with other attorneys
  • together – sometimes called ‘jointly’ – which means all the attorneys have to agree on the decision

You can also choose to let them make some decisions ‘jointly’, and others ‘jointly and severally’.

Attorneys who are appointed jointly must all agree or they cannot make the decision.

You can make a lasting power of attorney (LPA) online or using paper forms. Either way, you need to get other people to sign the forms, including the attorneys and witnesses.

IMPORTANT- The application process saves your LPA as you progress so you do not need to complete it in one go.

Please note – it can take up to 20 weeks to make a LPA if there are no mistakes on the paperwork/online form. however, using online forms can make the process a little bit quicker.

You do not need to pay for the services of a solicitor to make a LPA but this might be something that fits your circumstances rather than doing it yourself.

There are links to support and guidance services on the website if needed.


It is free to complete your LPA online, however your LPA cannot be used until it’s registered. There’s a £82 application fee to register each LPA. If the donor has an income below £12,000, or gets certain benefits, they might qualify for a lower fee, or the fee might be waived altogether. If you’re eligible for a reduction the completed form for this will be given to you at the end of this service.

I will be using my limited funds to ‘spoil myself’ with a LPA in the not too distant future. My parents will be my initial attorneys but that will have to change as our circumstances evolve over time. Let’s be honest, judging by the harmful and potentially dangerous ‘care’ being provided for Carla, Millie, and Karen right now, it could be the best £82 you’ve ever spent.

As a side note, I saw a segment on BBC news a few months ago in which a married couple, one of whom had Parkinson’s Disease, were shocked to find out that spouses do not have automatic LPA when the other is admitted to hospital and difficult decisions have to be made. Everything in this blog also applies to married couples and those who are in a legal partnership.

Living Will

This is different to a LPA but is also something for people living with M.E to consider. In the absence of effective ‘treatments’ for our illness healthcare professionals try all sorts of interventions to see what will work in X, Y, Z circumstance without knowing the clinical consequences. As we all know, patients and their support networks tend to know more about M.E than most medical professionals and this is your opportunity to prevent any inappropriate/potentially dangerous interventions being considered as part of your ‘care’ in specific circumstances.

Definition of Living Will and extracts from NHS website

Advance decision to refuse treatment (living will)

An advance decision to refuse treatment lets your healthcare team know your wishes if you are not able to communicate them.

What is an advance decision?

An advance decision (sometimes known as an advance decision to refuse treatment, an ADRT, or a living will) is a decision you can make now to refuse a specific type of treatment at some time in the future.

It lets your family, carers and health professionals know your wishes about refusing treatment if you’re unable to make or communicate those decisions yourself.

The treatments you’re deciding to refuse must all be named in the advance decision.

You may want to refuse a treatment in some situations, but not others. If this is the case, you need to be clear about all the circumstances in which you want to refuse this treatment.

Who makes an advance decision?

You make the advance decision, as long as you have the mental capacity to make such decisions.

You may want to make an advance decision with the support of a clinician.

If you decide to refuse life-sustaining treatment in the future, your advance decision needs to be:

  • written down
  • signed by you
  • signed by a witness

Is an advance decision legally binding?

An advance decision is legally binding as long as it:

If your advance decision is binding, it takes precedence over decisions made in your best interest by other people (see terms and caveats on the NHS link above)

If you have severe M.E one procedure you might wish to specifically deny consent for is a lumbar puncture as these are anecdotally known amongst M.E specialists to potentially have negative outcomes for people with severe M.E. This procedure was suggested for one of the very severe patients currently in hospital and a M.E specialist has had to work hard to prevent it from happening (again, in the absence of a Living Will/POA).  Again, this would be circumstance specific. A few handy links on the subject – 

(Thank you Naomi for the links, I knew you were the right person to ask x)

How do I set up a Living Will?

There are MANY different organisations that offer online application forms, I have listed a few free ones here (click names to go to website). You will have to do your own due diligence as I do not know which are the best ones – there are A LOT to choose from online.

Law Depot 

Compassion in Dying

MacMillan Cancer Support

As with LPAs, you do not need the services of a solicitor as templates are often free and downloadable. However, it may fit your own personal circumstances to consult a solicitor.

While we fight and campaign as a community for a NHS protocol and similar in other countries, we need to set up legal back-up plans to protect us from harm within hospital settings. Sad but very true.



and Foggy (OBVIOUSLY) xxx