To struggle to believe this person is being left routinely passing out and unconscious for hours?

I think there are many people who fall through the cracks. Services are so stretched, they can't run after people who are making it difficult to help them. GPs have such huge case loads, they must be constantly having to cross their fingers and hope people will be OK.

And even when well funded services exist, the person needs to be able to work with them. My city has done a huge amount of work on homelessness and someone I trust, at the heart of that work, has said that nobody now needs to be homeless, and if they are, it is because they can't or won't engage with services. That's usually mental health or addiction issues.

This case sounds slightly different but it sounds like they are not really helping themselves. It has echoes of many of the people on the Cockroach Cafe thread, where elderly relatives insist they can cope, refuse any kind of formal intervention and support, yet expect their children to run around after them and sort out the resulting crises. The cockroach cafe is a very useful place to air frustrations, explore the expectations that are being put upon you, and decide what your boundaries are. Sometimes you have to step back, tell them their expectations are not reasonable, and hope that it doesn't take a crisis to bring things to a head. I wonder of that thread might help you?

You obviously can't explain your relationship to this person, but if they are just a friend, you do need to know it's OK for you not to sacrifice your own wellbeing for theirs, because we ultimately cannot save people from themselves. And if it's a relative, well, the same really, though obviously it's harder to back off. But sometimes you have to or you will both go under. My alcoholic relative who could not accept help did die, and we all felt terrible about it, but there was literally nothing any of us could do unless they were prepared to meet us at least half way. Life is hard sometimes. I hope you are OK, you are dealing with a lot.

I wouldn't call you an idiot. Other than that, it is likely to be the latter for reasons myself and other people in the medial/clinical field outlined.

A lot of the ways older people/those with disabilities are left are disgusting. And, more occasionally, people not in these "categories".
I've heard too many stories, from too many people, not to believe this might well be true.

I didn’t believe it- I do now that I’m disabled. GP, Consultants, Cardiologist knew that I passed out on rolling over/standing/lifting my arms but there was absolutely no support. They knew I hadn’t been able to shower/bathe for 3 years and did nothing. There was no advice or medication offered, just discharge and told to monitor it (which I had done for 5 years prior). I had to fight for beta blockers (and only got them because of a locum doctor doing some standing heart rate tests which I had previously begged for from the cardiologist). With betas I can now sit upright in bed without passing out as my heart rate is not so high.

I genuinely would have never believed someone about the lack of support/medical attention so can completely understand you- unfortunately, it is absolutely the norm for anything that isn’t a well known medical condition.

On it never happening in a public place, I can see from your point of view (because again, I used to think it) but offer the alternative experience I have now that they only go in public or meet friends when they’re feeling well enough that it won’t happen.

Tldr: Yes, doctors really do leave people living alone who collapse all over the place and are unconscious for hours (it unfortunately happens a lot, especially to young women). You’re not horrible, it’s incredibly hard to understand it unless you or someone you live with goes through it.

I am afraid they would. I have been traumatised looking after a seriously ill partner for five years before his death. It was fine in hospitals; it fell apart when we were at home. No joined up support at all.

Is this person known to adult social services? Does he/she have any formal care in place? I would be inclined to take a step back from helping them as it sounds as if it is negatively impacting on your own health.

I don't think that you are able to see the wood for the trees atm @frequentlybaffuckled . Let the professionals take over, for your own wellbeing.

Credentials are nearly 30 years in frontline social services in saying this

If they’re genuinely having recurrent episodes of prolonged blackouts this isn’t something that would be dismissed without investigation (including options such an implantable loop recorder particularly if history of bradycardia). One episode of prolonged unconsciousness alone would be enough to prompt a hospital admission and inpatient investigation.

I suspect sadly this person has been offered these things and has declined them, which if they have mental capacity they are perfectly entitled to do. Unfortunately with the resources available it is simply impossible to keep chasing patients who decline investigation/treatment.

If they really want medical input now, they genuinely haven’t had investigations, and it’s happening a lot- present to A&E.

In the meantime I think you need to protect yourself.

Not believing that yes, people can be left with serious conditions to cope on their own is more damaging. Totally mumsnet reply though

I think that you are far too enmeshed in this @frequentlybaffuckled . It will only end in you getting more upset and frustrated with the lack of cooperation from them.

I would seriously suggest notifying your local Multi Agency Safeguarding Hub (the MASH) or equivalent, there will be one, giving full details and taking several big steps back.

Some people with brain injuries can also make them difficult, abrasive, combative, lie even etc.

So it could be true. That they are disabled in that way, or not, and if the latter that they are lying because they are lying, or lying because they have a brain injury lying.

It’s literally impossible to know.

All you can do is fill your cup and pour from it as much as your willing. That’s it really I think as there is no way to know.

I don’t think you are unreasonable to ask questions in these circumstances. This person does appear to be quite demanding of your time and efforts, but less keen on holding themselves to account. I don’t think it is unreasonable to question this “being passed out” for hours on end, with health and social workers aware and doing nothing at all. It would seem less likely than the alternatives- which are: they are unaware of these symptoms; the individual is not accepting of care/support offered or available (often as it is not what they want), thesymptoms described are being exaggerated (e.g. sleepy rather than unconscious); symptoms are consciously made up to garner something (your time, attention, things to be done in a way that suits them); or possibly a functional illness.

In my experience of these situations (as a medical professional) is that they are often complex. Professionals do get it wrong, of course- misdiagnoses/delayed diagnoses or incorrect support put in place, for example. However, also quite common- especially in certain types of conditions- is that there is a mismatch between needs vs wants, and personal responsibilities vs professionals/ services’ responsibilities. And there can certainly be an element of the importance is that the demands are met being as important as the support actuallt meeting their needs, as accepting the demands made is seen as being validating of the illness, and failure to meet demands as being akin to calling them hypochondriacs, even when that is not the case (especially in conditions which are harder to diagnose or where there is a functional component).

it is not uncommon for patients to be very demanding for referrals, assessments and so on, yet appear to be absolutely unable or unwilling to work with us. For example, not turning up to appointments or for investigations without calling to rearrange and then being incandescent that they have to wait for a further appointment (despite having wasted their opportunity, and taken a spot someone else could have used). Or being furious that if they’ve DNA’d 3 consecutive appointments that they are discharged back to their GP and will need to be re-referred- with the corresponding waiting time- and we won’t simply re-instate them. There will sometimes be valid reasons- though I think the vast majority of the time patients should be able to cancel, even if on the day. If for no other reason, the admin team can reappoint relatively quickly.

patients who frequently miss appointments, are poorly compliant with treatment or therapy and so on, but are very demanding in terms of wanting referrals, appointments, input and treatment- often have reasons as to why they behave this way. Whether that is chaotic lives, seeking to have an unmet need addressed in less than appropriate ways and so on. It sounds like your friend/family member may be wanting help but not prepared to take personal responsibility for their role in accessing it and adhering to treatment. It may be that they have been let down by professionals caring for them, but given your recent experiences of their behaviour, it seems entirely possible that the problem is largely if their own making. We are busy and if patients don’t attend appointments or decline support unless it meets their ideas or preferred scenario (however unreasonable they are), then we can’t force them to accept help. If they have capacity, they have to accept the consequences of their choices.

it does sound to me like there is a combination of genuine illness and accompanying disability, which are causing specific difficulties which they need help with- but that the individual is making any help that might be available very difficult to access by failing to take any personal responsibility for their role. e.g. failing to attend appointments and having wildly unrealistic expectations as to what can and will be done for them, and compounding that by refusing to accept help in any way other than that of their choosing.

My advice is to set very clear boundaries as to what you can and cannot do, and when you can and cannot do them, as well as your expectations of them and their behaviour, their responsibilities. If they can’t do their bit, you are absolutely entitled to minimise or withdraw your time and efforts.

You say they want help but also saying they won't do this that and the other because it "interferes with autonomy". So I don't believe either you or the professionals which you think should be doing more are actually able to do more.
As people mentioned on this thread, a person can both be disabled and an absolute pain in the backside. It sounds as though they had a lot of involvement all of which has failed and, unfortunately, it does happen in some cases and nothing more can be done short of capacity assessment.

Do you think they’re self-sabotaging on purpose? I had a friend that did this. She would ask me desperately to help because something had gone horribly wrong for her. I’d spend days sorting everything out so that all she had to do was post a letter/reply to an email/answer her phone - and she didn’t do the one simple thing she had to do after I’d done 95% of the work.

It was definitely self-sabotage, but looking back I think she also got some pleasure in seeing me stressed. I’d ask yourself if this person could be similar.

In your position, I’d sit and calmly lay out your problems and your feeling, eg about the deliveries. Don’t list every single thing, but do give a list and include how she messed it up. If she responds by saying she can’t help it because she keeps falling unconscious, I’d say something like “I understand you’re saying that. However, having tried repeatedly to help you, I’m afraid I can no longer do it.”

Then watch from a distance and see what happens. If you have concerns about her safety by all means contact whoever you think you need to, but take a step back for now.

This sounds like Functional Neurological Disorder which absolutely can cause someone to lose consciousness or become semi conscious for considerable periods and struggle to function normally afterwards.

Clearly they need some kind of diagnosis if this is the case but it would be a diagnosis of exclusion as it's a psychologically rooted condition. This is also the reason a doctor 'won't do anything' - there is no risk of physical brain damage as is the case with epilepsy and it cannot be treated with medication or surgery. In fact advice is that giving the symptoms (not the person experiencing them) minimal attention is one of the best ways to reduce their frequency.

There is something called Functional Neurological Disorder FND - non-epileptic seizures which look like epilepsy but are not caused by abnormal electrical brain surges. Instead, they represent a temporary issue in how the nervous system transmits signals, often resulting in unresponsive spells or blackouts. Not psychological but organic and physical. Very difficult to diagnose and to treat.

No one disputes that. But if that’s the case you give a shed key so you don’t treat people disrespectfully.

What is your relationship with this person and why are you looking out for them?

Without that information it's not possible to give a clear answer.

Some people cannot answer their door for a variety of reasons that particular day.

It is their choice
Or
It is part of their illness

Similarly, going to doctors or going to other appointments

One day they feel ok

Another day, they feel that they are not up to it

My suspicion is someone caring for a family member and being totally taken the piss out of - apologies for bad grammar

Agree. Not only do I not believe a word of this, but I think it’s rage bait.