Author Archives: sarasiobhan

Keeping mum, irony and shifting capacity

Posted on by
1

It’s a tricky one, this capacity business and parenting. I deeply believe that capacity should be presumed and agree (and welcome) that “unwise or eccentric decisions don’t themselves prove lack of capacity”. I also worry that this has led to instances in which the wellbeing of learning disabled adults is compromised because “capacity” is so difficult to demonstrate in practice.

There was a roundtable discussion about Winterbourne yesterday with a range of learning disabled people (I assume/hope there were learning disabled people present), families, community groups, government ministers, policy makers and service providers. This was live tweeted by various people (see #winterbourne to follow the discussion). Families cropped up early in the discussion and there seemed to be a call to involve families rather than treat them as a problem.

winterbourneImportant, much needed discussion, but I was struck by the irony of going to visit LB with the threat of him deciding he no longer wants to see me, hanging over my head. It is quite a blast to go from being the full time carers, with very, very little support over 18 years to suddenly being removed from the equation. We have to ask for any snippet of information. The outcomes of a team meeting on Monday remain unknown to us. Again, ironically, in an attempt to not appear a batty, desperately protective mother, I didn’t ask to attend this first meeting. When the default position is the young person has capacity (without capacity being tested), the positioning of family members within the structure of the mental health service is a bit anomalous. And anomalies are odd and out of place.

Fran came round yesterday afternoon, armed with useful information from a brilliant workshop she’d been to on capacity. It was run by Luke Clements, who is an expert in this area. “He was absolutely brilliant”, she said. “Ah, him? I updated the literature review for his disabled children and the law book a few years ago. My supervisor was the co-author.” Is that ironic? I’m not sure. My research at that time was about mothers and going out in public with dudes like LB. The real irony is that LB can’t go out anymore. And my role as a mother is now contested.

The Unit. Day 6

Posted on by
2

Crawled back to bed this morning, exhausted, and was kind of slumbering when the phone rang. It was Vicki, LB’s teacher. Charlie’s Angels were going to visit him this afternoon and she’d just had a call from a nurse at the unit. Could they talk about LB returning to school?

WOW. WOW. WOW. That.is.amazing. Back to school????

The highs and lows of the last few weeks are indescribable. Three sections in as many minutes and now back to school??? Fanbloodytastic.  Vicki told the nurse a bit about LB when he was Laughing boy, before he became withdrawn, distressed and eventually aggressive. They’re going to discuss a return to school after Easter.

I rang the nurse. They’d had the team meeting yesterday, done their baseline assessment over the past five days and will now start to get to the root of the problem. In the meantime the team think he needs to get active again, rather lying around all day.

I’m beginning to seriously love that unit.

Time for me to crack on with work now. I’ve got some cakes to bake later. And a load of other stuff to catch up with. Happier times indeedy.

ryan5-151

March 2012. In place of this year’s daffs.

The Unit. Day 5

Posted on by
Reply

LB seemed a bit odd when we visited. A mix of unusually cheerful and slightly different mannerisms. He was in his room where he spends his time when he’s not in the bath. His eyes seemed small and his face a bit puffy. I suppose he’s coming up to the best part of a week now without daylight or any exercise.

Rich tidied his room up while I drew him an Irish lorry from County Mayo.

“Where’s County Mayo Mum?”
“I dunno whereabouts it is. Hey, let’s look at the map K brought you and see.”

Silence.

“Where’s your map, LB?”
“I threw it away Mum.”
“Eh??? Why did you throw it away?!”
“I threw it away Mum.”
“Oh. Did it get torn or something?”
“Yes Mum, it got torn.”

Smithy’s father and the large German bear

Posted on by
2

Tom was chatting this morning about the graphic novel he and LB had produced a while back. LB was the story teller, Tom the illustrator. LB called it Pointbreaker as he’d just read Point Blank and Stormbreaker. Tom and Owen dug it out this afternoon.  Brilliantly random. “Stop, I’ll shoot you like a large german bear”. The names on the gravestones are hilarious; William Blake, John Kelly (Busker John) and Smithy’s father (from Gavin and Stacy)…

ryan5-146 ryan5-145

The Unit. Day 4

Posted on by
Reply

After feeling strangely heartened by the reminder that LB had rights, I began to reflect on what this meant in practice.  Who would/should safeguard those rights? He said no to an advocate when he was sectioned, but he doesn’t really know what an advocate is. He’s been in the unit for four days now with rotating staff. What they know about LB you could write on a postage stamp. We’ve hung out with the dude for 18 years and loved the socks off him. If anyone has his best interests at heart, I’d say we probably coast it. I get the arguments about the constraints and limitations parents (particularly mothers ‘cough cough’) can place on disabled kids through an overly developed sense of protection. But I also know how vulnerable these dudes are.

We rang the unit at lunchtime to see how he was. The  phone was passed straight to LB. I just wanted to know if he was OK and having a grunt from him wasn’t really going to answer that. I had a quick chat (not really the right word for a largely one-sided conversation) and asked him to pass the phone back to the nurse.

“We’ll visit this afternoon around 4ish if that’s OK. His sister will be back from university. We’ll ring before we come.”

“Great.”

Later that afternoon I rang. The phone was dead. Oh. Luckily, I’d been given a second unofficial number by someone who recognised how distressing this was for families. That number was eventually answered and with some resistance (all of a sudden bedtime routines happened straight after dinner thereby interfering with visiting hours), we were able to visit.

LB was in his room and seemed pleased with his cakes and bus magazines. We hung out for a bit, and, when we left saw some of the other patients. As usual, they were chilled and said hello.

We haven’t seen any other visitors all week. Despite the extensive visiting hours pinned on the front door, there are no visitor type concessions, like a vending machine, or waiting area. I don’t know if there is an assumption that people won’t visit or that visitors will cause disruption. Or maybe the other patients have exercised their rights and refused visitors. From the interactions I’ve had with them over the last few days, I find that unlikely. It seems desperately sad if there ain’t any. But I can kind of see how it could happen.

The Unit. Day 3

Posted on by
1

Went to visit LB this morning, after Sue and Tina called round in the mini bus with LB’s classmates. They’d brought a lovely card and flowers. Hilariously the kids pretty much ignored me but waved like crazy at Chunky Stan. LB was in the bath when I arrived, so I hung out in the lounge playing Candy Crush. It wasn’t so much about seeing him as knowing he was OK, letting him know I was around and, for me, being in the same space as him.

Various staff members stopped to chat and the other dudes hung out too. It was enormously peaceful. The odd offer of a drink. Lunchtime came and went, a communal eating of beans on toast. Some laughter and a sense of familiarity.

A staff member (JK) we hadn’t met before pitched up. He mentioned that LB’s dad had phoned the evening before but LB had said no to sharing his health information with him.

Screeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeching brakes.

Whaaaaaaaaa????????

Oh yes. LB had the right to say no. He also had the right to say no to visitors. We should ring so the staff can ask if he wants to see us. Ehhhhhhh??? He’ll never say yes to seeing me???? I make him fill the dishwasher????? The room started to spin a bit as the extremes to which this could be taken to started to sink in. JK said that if LB wanted to appeal against his section, they would support him. Oh boy. LB with rights. That was kind of hilarious. He is going to LOVE this. We talked through this a bit more, JK talking about various past experiences with patients. The room stopped spinning.

I left after 2 hours without seeing LB. He knew I was there but chose to stay in the bath. I rang the unit later to see how he was.

“He’s been fine all afternoon, totally absorbed in his map of Ireland that K gave him. He’s been tracing road routes along it.”
“That’s brilliant. I spoke to JK earlier about seeing if LB wanted to see us, which we’ll do in future. I just wanted to say thanks for letting me hang out so much there this week. It’s been so important to get a real feel for the place, see how everyone interacts and so on. I am so impressed by what I’ve seen.”
“That’s great and no problem at all,” J replied cheerfully. “We’re here to support the families as well as the patients.”

I’m off to have a piece of coffee cake now. And wait to be served the court documents.

 

The Unit. Day 2

Posted on by
3

Got a call this morning to say that LB had slept ok, up very early, had asked for toast and was about to have a bath. Fab. I went along an hour later and hung out in the lounge. Heart radio was playing some good music, I had my ipad and art therapy was happening in the dining room with two OTs. Very chilled. It’s so important to be able to hang out in the same space as him. LB’s key nurse, K, came and filled me in with more info and got more info about LB, especially his likes.

“Oh and he’s pretty interested in Ireland, or the Emerald Isle as he calls it.”
“Ah, that’s good, I’ll tell him I’m Irish.”
“Blimey are you?”
“Yes, I lived there till I was 10.”
“We’re laughing then…”

It was all very relaxed. LB appeared eventually, clean, calmer and seemingly a bit more at home.

Later that afternoon he was sectioned again. Section 2, which involves a team of doctors assessing him led by the psychiatrist who discharged him a week or so ago. [Cough cough]. Section 2 lasts 28 days (though it can be withdrawn with good behaviour).

We turned up this evening to hear that he’d got very distressed at first, because he wants to go home, but had calmed down after a small amount of sedative. K was just telling him about his rights, with a patient information form. This detailed his right to a tribunal and gave information about the legal process, solicitors and the Law Society. We chatted to him about the party we’ll have when he gets home, with special guest, Chunky Stan. He chuckled. As we left, he was bouncing down the corridor, clutching the information sheet, calling for his legal team to start the appeal process.

Happier times.

Fairer Charging?

Posted on by
3

In another twist you couldn’t make up, LB got a letter today from Oxfordshire County Council; he has to pay £63.45 a week towards his care, under the Fairer Charging Scheme. I called the guy who explained what it meant but I was too tired to take it in. We left it that LB would pay the backlog that had built up since November when he entered adult non services.

I mentioned it to Rich when he came in from work.

“What care???” he asked, baffled.

“Er. Good point. I dunno, I’ll ring him back and ask him.”

In an almost comedic conversation, cheerful chappy at the Council said that LB has to pay the County Council this contribution towards the cost of his care because he gets a direct payment of £151 per week. This is sitting in a bank account. The fact that we ain’t been able to buy any care is irrelevant. Can we use the direct payments to pay the contribution towards the non care? [I know, my brain nearly melted at this point]. No, that’s not allowed.

In effect LB will be paying the Council for the care we’ve provided.

Direct payments that aren’t used will eventually be reclaimed, and then LB can ask to have the money reimbursed. Now my brain is pretty foggy at the moment, but this whole process is beginning to whiff a little bit.

Update: Payment is being delayed while chappy speaks to the direct payments team about reclaiming the direct payments. This personalisation business is a lark. No care just aggravation.

The Unit. Day 1

Posted on by
7

Saddest time ever. But we keep telling ourselves it’s a necessary stage to help LB. He’s been sectioned now. Twice since yesterday evening. And was restrained in the night. On the plus side, we can visit between 10am – 8pm and it’s close. It’s easy to pop in for 10 minutes and the open door policy gives some confidence in how the staff are treating the patients.

It’s a building rather than a ‘ward’, designed in a circular shape so you can walk down the bedroom corridor, into the dining room through to the lounge and quiet room and round to the front door. Spacious, clinical, warm and clean. The staff don’t wear uniform and it wasn’t that clear at first who was staff and who was patient. Kind of hilarious.

The other four patients are youngish. We hung out in the lounge last night, waiting to get the OK to be there (after a bit of a mix up about ‘beds’). “Do you like fishing?” Rich asked one guy who was watching some fishing programme on the big TV. “Yeah, love it. I caught five fish!” “Cool! What kind of fish?” asked Rich. “Normal fish”, he said, cheerfully. Jenny* sat quietly chatting to herself about her trip to Londis the next day. She ignored LB when he asked her what she’d ‘got’.

Today our visits were about setting LB up with home comforts. I took in the rest of the coffee cake with a mobile DVD player and his Eddie Stobart box sets. He was pretty agitated when I got there and had a right old tough nut character watching his every move from his bedroom door. Tough Nut took me to the kitchen to get a knife to cut the cake. “They always find the first couple of days hard,” he said, kindly. LB ate the cake. His first food since he’d got there.

The second visit, with my newly appointed (she doesn’t know it yet) advocate Fran, was to drop off some more DVDs and money to buy snacks. He was calmer but sad. He wants to come home. He wants to go to Trax.

sackboy1The third visit with Rich was about pimping his room. A poster of the London Underground and Beatles album covers. He was asleep mostly, endured a bit of a cuddle and asked for  Series 2 to be put on his DVD player. He hadn’t touched his dinner.

So. A long day. And here’s to the Coffee Cake Fairy working a bit of magic. LB needs it.

*Pseudonym.

A different home

Posted on by
6

Not sure how to introduce this, after the high of yesterday’s Charlie’s Angels post. So I’ll just say it:

LB’s now an inpatient in a local psychiatric learning disability unit.

Whoah. What? What? What? Whaaaaat?

I would be shrieking if I read this blog regularly and read such a random, unexpected development. Sorry for the rip roaring pace. But that’s how life rolls in the strange world of non-information, uncertainty and general crapness that is health and social care.

The story was left with LB heading off to town with Sue and Tina. And a new (non) school timetable. Through a series of texts and conversations with a good mate/little bird during a long meeting at work, I found about a learning disability/mental health unit, five minutes from our house. Fifty metres from LB’s psychiatrist’s office. Yep. In the three conversations I’ve had with her, in two of which I raised serious concerns about risk of harm to himself or others, she didn’t mention, reassuringly, that there was always the option of a proper inpatient assessment so close by. We thought there was only out of county provision but this is the case for under 18 year olds, not adults.

Hearing that the town trip with Sue and Tina was cut short through agitation it was obvious that LB was moving into a space that was becoming increasingly small. And pretty much unworkable. It was time to act.

There followed a (bizarre and surreal) process that led to a call around 7pm confirming he had a bed. It was time to pack his bag.

There aren’t any words to convey how this feels and I ain’t going to demean it by trying.

I hope he’s in the right place for him, and gets some proper help.

Home feels very different without him.

ryan5-137