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Family Experiences of Vegetative and Minimally Conscious States

Exhaustion and frustration

Many of the people we spoke with described feeling utterly exhausted. The trauma of the original event had been followed by years of being on ‘red alert’, continually rushing to hospitals or care homes and facing extraordinary challenges both emotionally and practically. Dealing with red tape around their relative’s injury and every-day health and financial affairs could be very demanding. They talked of ‘drowning in paperwork’ and ‘fighting for care’. Families felt ‘thrown in the deep end’ with very little guidance or support. They also often felt they had had to fight for treatment – even for simple things such as making sure the patient has a properly adjusted wheelchair, as well as more complex challenges such as trying to make sure their relative was properly assessed and diagnosed (see section ‘Longer term care’).

When the injured person was an adult, with their own financial affairs, families were also confronted with practicalities of dealing with banks and utility companies – organisations that were not always responsive.
 

Mark describes the challenges of simply redirecting his brother’s mail or paying his bills.

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The form filling side of it was a real pain because he couldn’t sign anything and yet he was supposed to and, you know, the number of discussions we had about, “Well, he needs to sign a form.” And you’d go, “Well, he can’t.” “Well, then you can't...” nothing happens unless he signs a form. Even redirecting his mail still hasn’t been possible because he can't sign the form to do it and they won't do it any other way. Even the solicitors haven't been able to do – sort that out.

For me it was the mobile phone, it drove me mad [laughs].

Mark: Yeah, yeah.

I just wanted to cancel her mobile phone—I couldn’t do it.

Mark: Well, you see that – what surprised me was when – because we were trying to sort all sorts of things out to do with his house and his electricity bills and some companies were really great. His mobile phone company were excellent, I’d have to say, which surprised me. And they said, “Well, we’ll just put his account on hold, we’ll switch it off and you tell us when, you know, as and when he might have a use for it again or if he doesn’t...” I said, “What about what he owes you?” “Don't worry about that,” they said, “We’ll just leave that on hold and if he comes through this and he’s okay he’ll owe us that when he’s ready, but don’t worry about it.” And I thought, well, that’s a really forward, you know, impressive response. That’s – that was the phone company. The electricity company though, well, we’d been through, you know, they’re going to knock his door down with a policeman to disconnect him, even though the meter is outside but they still need to get inside. They wouldn’t arrange a date to do that so that I could meet them there to save them knocking the door down. They were – well, what happens about boarding his house up? “Well, the police might do that if you’re lucky.” Don't – you know, just completely unhelpful, painful situation over I think it was eighty quid’s worth of electricity. They wouldn’t let me pay for it because I wasn’t the account holder. 

Helen: How can they refuse to let somebody settle someone else’s bill—that just doesn’t seem possible, does it? 
 

Shona describes the challenge of everything from cancelling a mobile phone to trying to sort out incapacity benefit.

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But the ones that also got my goat the biggest were the arseholes of the stupid companies. Orange mobile phones. 

Yes! 

I had such a nightmare. Thank Christ we’ve got some friends that work for Orange. Nowhere in that department - but they managed to sort of say, “Will you please listen to this poor woman?” and I had somebody actually that could think for themselves, in a high office.

And it’s the trivial things like that reduce you to tears in the end, isn’t it?

“I want to stop the account. You know, “We don’t-“ You know, “I want to cancel the phone.” “We can’t, we need Mr [Husband’s] signature, we need to speak to him.”

Yes, been there.

You know, and things like that. …And another one, another one! And this is very, very relevant. Right. [Husband’s] now come home; he’s now left hospital. I have now- We are now in receipt – this was not long after, we’re still in receipt of - We were in receipt of DNA. We were in receipt of incapacity benefit, okay? He’d been home - (pause, sighs) Now when did we start getting incapacity benefit? Did we get that before he came home? We might have done because he worked for work for so many months, in the May he stopped officially working for work, then he went on to incapacity benefit, so it must have been the six-month review.

Yes. 

Right? The darling little knobs who have no brain have to have the six-month review. Now, bearing in mind I’ve had [husband] home, I am really not coping with my trauma. I am not coping with the trauma I’d been through, not coping with where I’m at now and total loss of life. You know, we were very outgoing, we holidayed most months of the summer, we did things, we, you know- That’s all gone. That’s the bit you don’t appreciate.

It’s the cage that comes down.

It is. That, they know, and that is the only way I can say that I did traipse this house like a trapped animal. And you don’t know what that feels like until you’re there. And I had the issue then, that this knob rang me up and said, “Mr [surname] is required to attend a review for his incapacity benefit”. And I said, “I beg your pardon?’”. “To make sure that he can’t actually go back to work.” [Laughter] I a little bit hit the roof, to which this woman said to me, “Well, if you refuse to attend then you will lose your benefit”.

So what happened?

I actually broke the– this is again why my social worker was such a knob because I ended up having to have my social- Because I couldn’t do a phone call. I could not ring anyone. I could not- And that’s – I couldn’t deal with the fact that every fucking question, “What does your husband do?” You know, when you’re trying to do your child tax form or when you’re trying to do your inc- my incapacity benefit, when I’m trying to then look at jobseeker’s allowance, fucking council tax. Every question! And it was, “I can’t do any more, I can’t keep going over this. I can’t speak to knobs who can’t compute”. I would go onto the phone, I’d say, “I’ll tell you my situation,” and I’d say it quick and brief and it’s, like, “Right, I’ve said it, I can carry on now”. So I’d say, “I’ve been in a major accident, my husband’s in hospital, he requires 24/7 care, I need to sort this benefit out.” “Okay, I need to go through my questions”, blah, blah, blah. “So what is it your husband does?” For fuck’s sake! So that kind of stupidity! And it actually came that my social worker had to sit there and she had to ring them all up and deal with them all.
 
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Hannah found the Inland Revenue very helpful – and only wishes other organisations had been as good.

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Because I feel a responsibility. I feel like it's a weight, it's just a big weight. I go over to his house once a week to collect post and more often than not there's at least one letter that needs to be dealt with and, you know, ring up various people to try and explain the situation. I've had this with the Inland Revenue. They were actually very good and they wrote me a really nice letter. They were expressing their sympathy, please extend it to the family, they were so nice. And – because they'd written a form saying, where's your tax return? So I rang them and they were very helpful, but she said, “I'm afraid you will have to download the form for him”, she said, “Can you put in any of the details?” And I said, “well, no, I can't get any of the information. I had no authority to act on his behalf, nobody will tell me anything.” So she said, “If you can just put in his basic details and a covering letter explaining the situation”. So I did that, and they sent me this lovely letter and said, you know, don’t worry, we've entered him as nil for this year and we won't be contacting you about it again. And I thought, “Gosh, I wish everybody was like that.”

A human response.

Blinking service providers are a nightmare. The electricity people, oh! Well, he had his electric and gas with Eon and there was a letter, “We note our meter reader has not been able to gain access to your house and has advised us that it looks like the house is unoccupied.” So he's been looking in the windows. I mean, you know, we've taken the televisions and things out, anything of value, because they're not covered on the insurance, so there's loads of his stuff in my house and Laura's house. So I took the meter readings and rang up, and this Scottish woman said, “oh right, well, he's actually £238 in credit.” I said, “Oh, would there be any possibility of actually putting that back into his bank account.” I'd explained the situation to her, just briefly. And she said, “Oh, I can't tell you that.” She said, “I can't possibly tell you that because you're not the account holder”. I said, “I'm not asking you to do anything”. I said, “how about – will you be reducing his direct debit then?” This direct debit of £86 was coming out. And she said, “I can't discuss that with you either, you're not Mr [Andrew Smith] now, are you?” She said to me like that. I was livid. I said, “how dare you speak to me in that tone of voice and so rudely”. I said, “All I am trying to do is make sure that there are sufficient funds to pay his bills, that's all”. 
Even those who eventually obtained deputyship from the Court of Protection to manage their relative’s affairs reported that this did not always guaranteed swift cooperation from the relevant bodies. They also found the process of applying for a deputyship from the court challenging (though the process has been simplified more recently), and could find being ‘inspected’ intimidating.

Imogen vividly describes how she felt at the mercy of someone from the Court of Protection she experienced as having been sent to “inspect” her performance as a carer. Her story makes clear how vulnerable family members can feel in a system that gives no special rights to “next of kin” in making decisions for these patients. Even a “nice” inspector can cause significant anxiety and distress.
 

Imogen felt the Court of Protection ‘owned’ her husband and she felt under scrutiny.

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The Court of Protection were stopping me from doing practically everything. And there was something – oh yeah, then they sent the Health Representative, a very nervous nice lady whose job it was to check that I wasn’t trying to murder him I suppose. She came in to see that he was being properly looked after and the Court sent this person. The Court of Protection's role was to check that I was not – that he was being – because he now belonged – he was theirs. You know, not only had the nurse taken him, the court had taken him. So this woman is sent to make sure he's being properly looked after.

And this is when he was in the care home?

Yes. It wasn’t to do with the care home. They wrote to me from the Court of Protection. She was a representative of the Court of Protection. And –

And what happened, she came and interviewed you? 

Yeah, she sat in the room with me, asked me questions, looked at him, made sure he was okay. But, you know, I was so nervous before she came, because I didn’t know what- if they thought I wasn’t doing a good enough- Every- The point about the Court of Protection is that they have the right to withdraw – to take you out of the equation and put someone else there. If they do not feel you're fulfilling your duties. And they don’t treat someone like a relative any better than if you were the next door neighbour who wanted all his money, or a stranger who wanted all his money. So I felt quite sorry for her. She was a decent person, but she had to ask very horrible questions. 

What sorts of things?

I can't remember. I wonder if I've got a copy of it, I don’t know, I did keep it all at the time, but I just– 

But you felt you were on trial?

All the time, yeah. That I was being– not necessarily – yeah, I was being questioned about my ability to act as the person responsible for his care. And that if I didn’t fulfil whatever was supposed- It was a bit Kafkaesque, you know, you didn’t know what the rules were actually. But if you didn’t fulfil them, you'd lose that role, and your life would be not only awful in the part anyway, but the last bit would be taken away as well.

So did you think they could like ban you from seeing him, or – 

Well, you don’t- Yeah. Even though, I mean, I know that in reality if anyone- If I'd said to them they'd have said, “Don’t be daft Imogen, you couldn’t do more than what you're doing”. Because everyone used to say to me, “I don’t know how you go in there every day, I don’t know how you're doing what you're doing”. But I still had that fear that they could take the money away, they could take the house away, they could take him away. Because I didn’t have control. 
Dealing with the health service and any legal proceedings can also be slow and frustrating. 

Gunars describes the emotional toll of repeatedly having to chase documents and write everything down for legal proceedings. “I found it incredibly emotional”, he said, “Every note that I wrote to the family, every note that I wrote to the medical profession, every liaison with the legal people … ended up in tears. It was emotionally and mentally draining.” Gunars often felt that he and his partner, Margaret, were “banging our heads against a brick wall” and the frustration put a strain on him, and on their relationship. Margaret commented: “for us as a couple there were times when it became exceedingly difficult to just cope with the way we were each trying to deal with it”.

When an insurance company had assigned a liaison officer, families seemed to have extraordinarily good support compared to those who were trying to navigate the system on their own. Case managers could help for example, in finding an appropriate care home and understanding the healthcare system.
 
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Gordon says the case manager assigned by the insurance company was invaluable.

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I’ve had a very, very good case manager, [Name] who came on the scene in the June after the accident. She was exceptional, from June until she went off and have a baby this time last year. She had been exceptional and yes, it’s cost the insurers a lot of money, you know, because I was calling her every day, was talking things over with her, debating things with her, asking opinions. She may have done more than – well I think she did do a lot more of what I understand a normal case managers does, but she was exemplary and she was my rock, actually. She was my rock. For the period she as with me, she was my rock. She’s now back with me. She’s back from maternity leave and she’s now back with me. And okay, things have settled down and I won’t use her as much. But she’s the only person, I have to say, who I’ve felt that I could ring up and say what about this, what about that, and know that I would get – I would get supported or, you know, she would give me – always used to give me and sometimes used to go against me. Sometimes she said: “Gordon, it’s not – come on, it’s not quite like this. You still have this or possibly we should deal with it like this” and, you know, she – our characters complement each other. She’s very calm and she’s ex-physio, so she’s not medically, clinically trained. It’s more physio, but she has knowledge and she’s a very different character to me and there have been a lot of difficult decisions, a lot of difficult discussion, many difficult discussions that we had, particularly with Dr [Name] during the first months at [Place Name] that we had to deal with that sometimes she took on her own. She agreed it was best she take on her own. And I trusted her to take them on in the room, and I gave her the authority to take them on her own. And she would come back, deal with it, come back and tell me what she’d done. 
The accounts families give of the practical challenges suggest:
 
  • there is further work to be done to ensure that all utility companies, banks, mobile phone companies and some government departments understand and are able to respond appropriately to families with a relative with severe acquired brain injuries.
  • it would be useful to encourage more people to choose who they would like to make decisions if they cannot by completing LPAs (Lasting Power of Attorney). An LPA can assign decision-making rights to another person – for Finance or for Health and Welfare in advance of losing capacity. Appointment of LPAs can pre-empt some of the problems faced by families after someone is injured. 
  • it is important to let people know that Court of Protection forms are now (since 2013) much easier to fill in so that they are not put off doing so.
  • it is important that inspections for LPAs/deputies are rigorous but supportive to offer help and guidance alongside appropriate scrutiny.
  • Most families are thrown in ‘at the deep end’ – into an extraordinarily challenging situation - case managers assigned to liaise with the family are very valuable. It would be useful to extend this service to families who do not have an insurance claim.

Last reviewed December 2017.
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