Straight to voicemail

It’s been two days since I’ve spoken to Ben. He won’t answer the phone or his mobile. He won’t answer my Skype calls. I’ve asked a friend to contact him. Most of the time, he won’t answer her calls either.

Meanwhile, I have been searching for detox centres. One of them quoted a fee of 4000 pounds for two weeks. None of us has that kind of money to throw around. Given that Ben used up all the public funding he had from our borough on his day rehab programme (the day programme he failed from day 1 because he was drinking on the sly), it is very unlikely that he will access another detox through the NHS. So, we have to go private.

I think most families of addicts end up here. Having exhausted all avenues through the NHS, they have little choice but to go private. It is not something I believe in, in principle, because, as Danny Boyle’s Olympic tour-de-force so movingly showed, the NHS is a great British initiative founded on the most basic principle: that everyone is entitled to quality healthcare, whatever their financial means.

But here we are. The NHS has helped us, yes. Ben has been detoxed twice already and received a generous funding package for him to go into a rehab day programme. But the  fact remains that he was given the wrong care, because the NHS blindly follows guidelines motivated by budgetary concerns. Because he hadn’t received care in the community the funding panel, in their infinite wisdom, chose to send Ben to a day programme rather than a residential one. Everyone, including Ben’s own care manager, knew this was the wrong choice. In the end, it was a waste of public money.

So, here we are. There is no guarantee that going private won’t be a waste of private money, but what other choice do we have?

How do I feel about all this? In refusing to answer my calls, in provoking and sustaining my anxiety, Ben has done the unforgivable. Yes, I will sort out his detox. Yes, I will ensure he gets from there to rehab (well, my friend will). I may even try to sort out an exit plan for him, once rehab is over. That exit will probably entail him going back to Australia. Because I don’t want him back in my home.

8 days since detox

Ben has been alcohol-free for eight days now. He still doesn’t get to sleep until 4 or 5 in the morning, which means he is usually beached on the sofa for half the day.

But at least he doesn’t stink of drink. And I don’t have to worry about finding ‘anything’ in, on or around the toilet. He has also done a fair amount of house work since he got back – lots of laundry and cooking. He even bought a steam cleaner off of QVC – with the intention of disinfecting the putrid futon.

We’ve come around to the idea of day rehab, largely because we haven’t a choice. We visited one place down in Brixton. It’s run by people with decades of experience in the system, but they’ve only just set up, so things are a bit ad hoc. Equally, their day programme is not at regular hours – times vary from day to day. Which means that Ben wouldn’t have the kind of routine we were all hoping for. At least, that’s what it looks like.

We’re visiting another centre closer to home on Tuesday. Like the Brixton centre, it offers couples counselling. It also offers family counselling and they run a programme specifically for children – meaning that Rosie might be able to come with us when we both go in. I’m getting ahead of myself. First, we need to visit and get a feel for the place. Then Ben will make his decision.

The idea is for Ben to take the day rehab and see how he manages with it. If it doesn’t suit, he will appeal through his key worker. I did ring around to find out what happened – and by some coincidence, ended up speaking to a woman who had sat on Ben’s panel. She told me the usual – that their first port of call is always to treat a patient in the community. She also said, point blank, that residential treatment costs a lot of money and that they have a finite budget for the year. So that was that.

She did say that Ben could speak to her if he wasn’t happy with the day programme. If he had a persuasive enough reason, she would put that forward to the panel when he appealed.

For now, we’re taking it day by day. Every time Ben goes down to smoke a cigarette (at least 20 times/day), a hundred bats take wing inside my stomach. All those fears. All that anxiety.

Rehab day programme

The funding panel made its decision on Ben’s application for residential rehab yesterday. In their infinite wisdom, they have chosen to refer Ben to a non-residential, structured day programme.

This means that Ben will be returning home every evening from whichever centre. And every evening I will be wondering whether he has relapsed, what state he will return in, and whether I will finally lose my mind and kill him. The one thing I know is that I can never – never – see him with that glass-eyed, pissed expression again.

Ben is in shock when he receives the news (he had been travelling for more than two hours to an appointment that he was told was at one end of the borough only to find out it was at the other end, and then, once he got there, unnecessary), and I thank myself for being a paranoid control-freak, arranging for my friend to be with him.

I spend the whole tube journey back from work screaming ‘NOOOOOOOO’ over and over again in my head. It is a high-pitched, crackling scream that crushes every rational thought in my mind. I want to cry, but there are no tears. I am in public, after all.

Apparently, the panel based their decision on the notion that Ben has enough family support to warrant a day programme. Family support? That’s me – effectively a single mother and breadwinner with no extended family to rely on. A woman on the edge of breakdown.

I kick myself many times – in the ribs and in the head – for being so damn efficient at  intervening in Ben’s case with all and sundry. I should have thrown him out. It seems that I am being punished for being compassionate.

But I can’t do this. I know I can’t do this any more. I have reached the end of my reserves.

I want a copy of the panel’s report so I can rebut it – so I can tear its logic into nano particles. I am writing to my MP, to my cabinet minister, calling on our local service-users’ advocacy group – anyone who will listen. But first, I need to speak to Hanife.

So, yet another work day is blown to bits. It is 7:33AM and my head is already throbbing.

Assessing his rehab needs

Ben is out of hospital. He came out last Friday evening, groggy and irritable. I spent the whole weekend plus the last few days in a state of acute anxiety.

I watched Ben every time he went outside for a cigarette, and refused to let him go anywhere without a chaperone. On Monday, he had his community care assessment – his assessment for rehab – at our local NHS drug and alcohol service.

This was our make-or-break appointment. It was our opportunity to work with the community care assessor, Hanife, to build a case supporting Ben’s request for rehab. His case would then go before a funding panel which would approve or reject Ben’s application.

From the beginning, it was clear that Hanife was on our side. She had already been in regular contact with me. She tried to get the hospital to postpone Ben’s discharge to Monday, advised me on how to keep Ben busy post-detox, warned me it was(is) a dangerous time – where the likelihood of relapse is very high.

Hanife’s default position was that Ben needed residential rehab. We talked about why Ben felt he needed rehab, what his motivation was, what his objectives were. The complexities of his illness and treatment were unpacked. There was the urgent need to address his depression, anxiety and severe sleep deprivation. He needed space to explore his broken family relationships, and the time to rebuild his confidence and self-esteem.

There were questions about Ben’s ‘human capital‘ and ‘social capital‘ – government speak – all of which only reminded us that the funding panel’s decision to approve or not approve Ben’s application was governed entirely by financial concerns.  But Hanife seemed positive and ready to do battle with the panel in order to get what we needed. We felt we were in good hands.

The assessment took just over two hours. We came out feeling hopeful. Ben seemed less anxious. Nevertheless, I had set up a rota to cover the days when I couldn’t be at home with Ben. One of my friends came up from South London to spend the day with him on Tuesday. Another travelled from Cambridge to be with him yesterday, despite Ben’s protestations. ‘A bit unnecessary,’ he kept saying, acquiescing only to humour me.

We were preparing ourselves for a decision, which was due either this or next Wednesday. When it came, it unhinged us all.

Hospital detox

Ben is still in hospital. They are doing a quick and cheerful detox (not sure he’d describe it as cheerful). He’s lying in an acute medical ward, sharing a room with five other men – all of whom are fragile and elderly. He’s got one line going into his hand, is given two injections (one of which is in the stomach), and is on a round of tablets.

Hospital detox is boring. Ben is still shaking and not allowed to walk very far on his own. The drip is what keeps him tethered to his bed, otherwise he’d be roaming the corridors, looking for a place to smoke.

One of the other patients – also an alcoholic – has already broken the rules and had a cheeky cigarette in the ward toilet. He denies it. ‘So, who did?’ presses the nurse. ‘A spirit?’ I can’t stop laughing. Even Ben smiles. The culprit (as the nurse calls him) says, ‘No, no, I didn’t, no.’ He is smirking (although, to be fair, he has looked this way since he was transferred to this ward room). His face is lined, he wears a tuque and his legs are bloated.

When the other nurse arrives, the culprit is upbraided again. Nurse 2 brings a can of something and sprays it here and there, leaving a synthetic sweet vapour surfing on top of the noxious cigarette odour. The windows are promptly opened to let the fumes out.

‘You’re lucky,’ I tell Ben. ‘You’ve got some ready-made entertainment here.’ He nods. ‘At least I got a small hit, eh nurse?’ he jokes. She’d earlier told him he couldn’t go out for a cigarette because he was shaking too much, and because wheelchairs are like ‘gold dust’ at the hospital, and if anything happened to Ben, it would be on her head.

I have little sympathy for Ben’s need in this case. I can’t see why precious resources should be diverted – even temporarily – to satisfy his nicotine addiction. So, I’m with the nurse. Poor Ben looks defeated.

His request for a cigarette break was prompted by a visit from the consultant. Over the course of 4.5 hours, Ben is visited by three people: two from the local drug and alcohol liaison service (they are there to liaise with Ben’s drug and alcohol service) and the consultant. The consultant is firm but honest, dispelling any hope we might have of getting Ben straight into rehab. But before I am destroyed by this news, I realise that he knows little of Ben’s case and does not know that we have already made significant inroads on our journey towards treatment.

In my desperate state of mind, I prefer to hang on to the words of the first specialist. He seems to know a few people at Ben’s local drug and alcohol service and seems willing to endorse his request for quick admission into rehab. It’s a long-shot, but not impossible. I want to believe it is possible.

So tomorrow, I am back to work, but also, back on the phone to all these various pieces in the treatment puzzle: Ben’s key worker, his community care assessor, the two people from the local alcohol liaison service. I’m fed up of being fed a line. I’m going to keep badgering until the wall crumbles and the lines are reeled back in.

 

 

 

Step 5 – Don’t be disheartened by NHS red tape

Ben has been waiting for treatment for his alcohol addiction for several months now. We have been through the mill, raising the alarm about his deteriorating condition as early as last October. Five months of chasing later, and it really was Ben’s GP’s intervention that opened the crucial door.

But my worry lately has been whether we are too late – whether Ben’s health has declined so dramatically that an urgent hospital admission will be necessary, scuppering our hopes of getting Ben into a long-term treatment programme.

Today, we made one minor (possibly major) breakthrough. Ben’s new key worker, Marc, confirmed that the appointment we had been waiting for with the community care assessor – the one which will determine whether or not Ben is a suitable candidate for residential rehab – is finally happening on Monday.

Apparently, Ben’s manager will be making this assessment. It is unclear to me why this couldn’t have been done earlier, since Marc had said that Ben needed to be assessed by someone external to our local NHS drug and alcohol service and now it transpires that someone within the service, namely a manager, is also qualified to do it. I am biting my tongue right now, saving my queries or complaints for later, since the main objective is currently within sight.

Even Ben seems to have been buoyed by this latest news and was upright when I got home with Rosie this evening. He’d managed to prepare the bathtub for her and roast some potatoes for dinner. He’d put a load of washing in the machine. And he’d taken out the rubbish. This new found, if limited, energy can only be attributed to a renewed sense of hope.

Ben’s GP has also been very good at ringing us back when we’ve left messages for him. He has been the lynch-pin in this whole process. Without his intervention, we would still be at sea.

Still, we mustn’t get ahead of ourselves. Marc was very clear with me today that things would not happen ‘over night’. Once the assessment on Monday is complete, the team’s recommendations for Ben’s treatment – namely for detox and residential rehab – need to go before a funding panel. The panel meets every Wednesday, but there is no guarantee whether that paperwork will be completed in time for it to be submitted by the coming Wednesday, in which case, we are facing yet another week’s delay.

And if the panel rejects the application, we are back to square one.

I prefer to assume that the panel will pass the application. I can’t believe that all my complaining/lobbying/beseeching will come to nought. If it comes to it, I have further avenues to pursue – starting with Ben’s GP, again. As long as he remains on our side, Ben has a good chance of finally getting the treatment he desperately needs.

Step 4 – What if your key worker is unresponsive? Talk to your GP

Once Bianca retired, Ben was in free-fall. He was seeing a different key worker for post detox support – part of the after care package put in place before he went into detox – but he wasn’t being seen regularly by an alcohol nurse/key worker at the local drug and alcohol service that was following his case. This went on for two months. By then, he was back to drinking heavily. Eventually, the post detox key worker had to stop seeing him, because Ben was clearly back on the drink.

Eventually, a new key worker replaced Bianca, but he left before he even had a chance to see Ben. Some weeks later, he was replaced by Sara.

I telephoned Sara to discuss Ben’s case, before she met him. She seemed distant and uninterested, and bent on ending the conversation as soon as possible. I was telling her that Ben was drinking again, that he was heading down the same path he had been on earlier in the year and would end up back at zero if he wasn’t sent into rehab or something similar immediately. I also said that he was talking about suicide. ‘What’s his name again?’ she asked, 15 minutes into our conversation.

That set the tone for her interaction with Ben – and me. She even stopped seeing him for about a month, because he “kept saying the same things to her”. It was precisely during this time that his conditioned dramatically declined.

Whenever I spoke to her, she displayed the same disinterest. She even laughed when I told her that the only food he was eating at the moment were an apple and a few chocolate digestive biscuits. She made appointments with Ben which she didn’t turn up to. I know this to be a fact, because I was present when she made one of those appointments, and I accompanied Ben on the assigned day, only to be told that she wasn’t there. Unlike Bianca, she made no attempt to keep me abreast of developments. If I didn’t ring her, I wouldn’t hear from her.

Fed up with the lack of progress at the service, I accompanied Ben to his next GP appointment (this must have been about a month ago) and complained bitterly about what was happening.

The GP rang them up and queried Ben’s case. I don’t know what he said to them, but a few days later, Sara filled in an application form for detox for Ben, and the alcohol team had decided that detox should be followed immediately by a residential rehab programme – pending an appointment with the community care assessor. (Prior to this, all talk of rehab was firmly discouraged by them.)

Once that was done, they said, a recommendation for detox and rehab would be put before the funding panel. If they okayed it, Ben would be sent immediately into detox.

Last week, Sara left the drug and alcohol service and Ben’s case has now been transferred to a new key worker – Marc. We only found out about this after I complained to the GP again because the community care assessment appointment still had not been made despite promises that it would be made last week and the week before that.

Marc and I have spoken about Ben’s case. He appears to be concerned about Ben’s condition, and insists that they are working as fast as possible. I see him later this week. The thing is, Ben is so ill that I doubt he will make it through another week, let alone two. I feel like I’ve hit a dead end.

Still, the lesson in all this is, if your key worker isn’t responsive, request a new one (in retrospect, I don’t know why we didn’t). At the same time, keep your GP updated on any progress. Your GP is just as much an advocate as a good key worker can be.