Elder.

Tags

Common Trials

<Brrrr brrrinnngg>

Papa (on speakerphone): Hello?

Voice: Is that G?

Papa: No, it’s G’s father.

Voice: This is <organisation> responding to a voicemail left yesterday. Can you tell me G’s date of birth, please?

Papa: Oh-one oh-eight oh-two.

Voice: First of August. Twenty-oh-two?

Papa (dryly) : I hardly think I’d have still been around to answer the phone as G’s father, if it had been nineteen-oh-two.

Goodbyes.

Last ever visit to Inpatient Hospital. G’s course of treatment is finished. The consultant checks G over for the final time, discusses discharge documentation, hands us on to the senior nurse to arrange for letters to be sent.

The nurse turns sentimentally reminiscent. “Long time you’ve been with us, G – goodness me, over ten years! I remember the first time you came here and met the team.”

“I just remember too many people in the room,” says G.

“There were fourteen of them,” I say. “I counted.”

“Your Mum’s always been the great one for accuracy,” says the nurse, laughing. “I’ll never forget her pulling out your file in that first meeting. Anything we asked, she riffled through that enormous lever arch folder to find an exact answer for everything.” She clatters away on her keyboard for a while, then turns back to G. “That’s you done. I feel a little bit sad – we’ll miss you. Before CoViD, I’d have offered you a goodbye hug, but we are not allowed to do that now.”

G gives her the trademark blank-faced basilisk stare, then says, “Suits me. I’ve never been a huggy person, even before CoViD.”

SATS: Day 2.

Today we name parts of speech. Yesterday,
We had spelling and punctuation. And tomorrow morning,
We shall have reading and comprehension. But to-day,
Today we name parts of speech. Dandelion clocks
Flutter and disintegrate timelessly over the sports field
And today we name parts of speech.

In this sentence, draw a ring around the subordinate clause. And in this,
Delineate the main clause in a similar manner. Define the characteristics
Of (a) a main clause (b) a subordinate clause (c) the subjunctive mood,
Which in your case you’ve had no time to study. Above the treetops,
The clouds’ broad brushes limn celestial works of art,
Which in our case we’ve had no time to study.

In this sentence, carefully identify the fronted adverbials.
State how you know they are (a) fronted (b) adverbial; and please do not let me
Hear anyone objecting that, “You cannot have ‘an adverbial’ because ‘adverbial’ is an adjective, not a noun,” – you can do it quite easy
If you nounify your adjectives. On the windowpane, a ladybird
Trundles soundlessly in search of the sun, never letting anyone hear
Her objecting to the nounification of her adjectives.

You have been given a word mat. The purpose of this
Is to provide you with adverbials of feelings, manner, time and location. You must use them
Appropriately to front the verbal phrases below: we call this
Completing one’s sentence. And beyond the casements,
The swallows fly without cease from mud-patch to eaves:
They call it completing one’s sentence.

They call it completing one’s sentence: it is perfectly easy
If you nounify your adjectives: like the word-mat,
And the verbs, and the pronouns, and the prepositions,
Which in our case we’ve had no time to study; and the captive insects,
Desperate to reach skies beyond the glass; and the swallows condemned to an endless backwards and forwards,
For today we name of parts of speech.

With apologies and gratitude to the shade of Henry Reed, whose unsurpassable (if highly imitable) original I first read when I was only a very little older than today’s SATS-takers; and which has stayed with me down the decades since.

Undeliverance.

Phone call from a chap with an Indian accent: “This is Pharma delivery service. I have a parcel with medicine for Grenouille Chrome, I am on Chrome Approaches but I can’t find your house.”

This has happened frequently over the last 20 months: at least once a week, often involving consignments of G’s multifarious supplies. GPS systems seem incapable of locating a house that predates postcodes by over 200 years. Instead, they take delivery drivers to the new flats in the cul-de-sac around the corner (which are built on what used to be this house’s farmyard).

So I say, “If you’re on Chrome Approaches, I could come up to the top of the drive and look out for you?”

“I’m by the new flats.”

Turns out he isn’t. Gazing out of our window as he speaks, I see a high-sided white Transit turn into Farmyard Flats Cul-de-Sac, having passed the house again.

“Is that you in the big white van? If you look to your left, can you see an old cottage? That’s us.”

Leaving him to turn round once more, I hang up, go and put my shoes on and trot up to the top of the drive.

The van is parked right across the pavement, and the chap is in the back, clipboard in hand, scrabbling around amongst the packages.

Presently, he emerges, pulling his mask up. “I am so sorry, they have listed the delivery on my schedule but they haven’t put the package on the van. I will have to find out what has happened when I get back to the depot. Maybe it will be here tomorrow.”

He brightens. “At least I will know where to come next time!”

Hundred pounds to a few small potatoes says ‘next time’, it’ll be a different driver.

Robo-Flop

Tags

adult LD services, care in the community, caring, Personal Independence Payment, true stories

Had to phone the DWP to tell them that G had been evicted from hospital sooner than expected (PIP, reinstatement, for the purpose of).

After a solid 10 minutes of listening to options and irrelevant public service announcements broadcast on a RACALL-type system, I was then treated to an interrogation whereby I had to input information (G’s full name, NI number, DoB, address, GP details etc.) via an automated voicemail system.

Finally, I got through to a real human being (by this time, I had wandered off upstairs with the handset, brushed my teeth, made the bed and was sorting a load of laundry):

“Can I have the claimant’s name, please? And NI number/DoB/address/GP?”

“I’ve just given all that information to your robot-woman, hasn’t she passed it on?”

No.

It would appear that the entire automated system is there just to waste my time and the public’s money.

There are definitely days when one wishes one were in the proximity of these machines with an axe. Definitely days.

Senseless.

Tags

Census, learning disability

Filled out the household Census form this afternoon, like the worthy and responsible citizens that we are. The last census I remember filling out for myself was way back in 1991, when I was a single twenty-something in a flat of my own, but as I’d have been pregnant during the 2001 census, it probably failed to register and in 2011 we were on the move, so it’s likely that both times I just filled in my bit and left the rest to P.

Not today. The envelope with the purple leaflet and the code for the online form arrived some time last week and was laid aside for the weekend. This afternoon, I fired up the laptop and typed in the code. P said he was happy for me to enter his answers, which were entirely of the white-bread variety.

When it came to my turn, I answered the mandatory questions seriously, but my sense of the absurd overtook me when I got to the voluntary ones. I answered them, but am not in the least bit regretful that my answers are more likely to provide amusement for twenty-second-century historians, than data for twenty-first-century number-crunchers.

G, like Papa, was up for dictating answers. We rattled through name, address, date and place of birth, but when it came to ‘How would you describe your national identity?’ (“Wassat mean?” “It means which country do you feel you belong to – Britain, England, Scotland, Wales or Ireland?”), G turned thoughtful and then positively philosophical.

“Britain isn’t a country, is it? I don’t really belong to England because I’m allowed to be Irish as well, my passports say so and I’ve got cousins in Scotland and France and Italy and Canada…. So I’m all-sorts, really.”

“Okay, so if we tick ‘other’, down here, we can type in whatever you like on the next page, how’s that? What do you want me to put?”

“English. And Irish. And all the rest.”

“Do you feel like you belong to Canada or Italy, though? Your cousins belong there, but do you?”

“S’pose not Canada, ‘cos I’ve never been there. But def’nitely France and Italy.”

“You wouldn’t be able to get a French or Italian passport, though, would you? Does that make France and Italy different from England and Ireland?”

G went to the drawer in the study where we keep the passports, turned them over, stared at the photographs and the covers.

“What’s these words on both ‘f them?”

“European Union.”

“C’n I put European, then?”

“Certainly, and I suppose that would sort-of cover France and Italy as well.”

“Yes. An’ then put Allsorts.”

I did as I was instructed and we ploughed on until we came to ‘Which of the following best describes your sexual orientation?’

“What?” said G.

“Your sexual orientation means whether you fancy boys or girls.”

G’s expression shifted, slowly, into an outrage that would have done credit to a Victor Meldrew or Hyacinth Bucket.

“Why d’they want to know that?”

I clicked on the ‘Why do we ask this question’ link.

“Says you’ll be helping your community get the services needed now and in the future.”

G snorted. “I need services for my dis’bilities. Not for fancying people.”

“It’s a voluntary question, you don’t have to answer it.”

“I’m not going to answer it. ‘Sides, I haven’t decided yet. ‘M much too busy foc’ssing on gettin’ back to College to finish my BTEC, to worry about who I fancy.”

Test, Trace, Tiers and Tears.

Panicked text messages on Monday from a friend who lives at the very edge of a ‘Tier 3’ area. Her eldest child had come home from school feeling poorly, with a ‘pounding headache’ and a temperature of nearly 40°. She administered paracetamol and tucked him up, but within a couple of hours, he was complaining of pins and needles and numbness in his limbs. She called 111 and was told an ambulance would be sent ‘in a couple of hours’. She’d given up on that and got him to hospital herself, but now she’d been waiting in A&E for hours and nothing was happening. She sent me a photograph. The lad had his hand across his eyes, but below that, his face was flushed with a pinprick rash.

I phoned her. “Is the light hurting his eyes?”

“Yes.”

“I think you need to find a member of staff, right now. Say he’s got a high temperature, terrible headache, neuro symptoms, photophobia and a rash and ask, ‘Could it be meningitis?'”

It was.

Once diagnosed, the treatment was exemplary. IV antibiotics, ensuite single room, checks for sepsis, intensive monitoring. After a couple of days, he was sent home, with community nurses coming in to administer the antibiotics. Then, late on Thursday afternoon, the bombshell. The lad’s routine CoViD swab had come back positive and the whole family would have to isolate.

The nurses will still come, wearing full FFP3 PPE to do the antibiotic infusions, but the local pharmacy doesn’t do medicine deliveries and NHS Volunteers were unobtainable. The GP, apparently, hadn’t been notified of the coronavirus diagnosis by the hospital so couldn’t put anything in place. So much for Test, Trace and Isolate efficiency. My friend spent Friday grinding her way round the usual loop of circular signposting, but eventually gave up, because she had another problem. She only had enough food in cupboards and fridge to last the weekend and didn’t know of anywhere local to her out-of-the-way house that does deliveries. Worse, her children normally get free school meals and while a week’s half term is manageable, a fortnight’s isolation, with 6 servings needing to be produced three times a day, is going to take a lot of doing. She called me back, by now in floods, not knowing where next to turn.

Well, thank goodness for Marcus Rashford and his astonishing Twitter list of food outlets willing to help. My friend doesn’t do Twitter, but a mere five minutes’ scrolling on my part turned up several places that I could pass on to her, including a local pub, offering children’s half-term food. She very nervously emailed the pub, and not only are they going to do the children’s lunches every day for the next fortnight, AND deliver them, but they will provide daily lunches for the adults as well and are putting out a call to their regulars to see who can do the medicine pickups.

Now that’s what I call people power. It’s just gobsmacking that the Government is so useless in the face of need, when one very young, apolitical man can galvanise so much activity.

I’m pretty sure my friend’s kids are not Man U fans (I don’t take much interest in these things, but their house shows a certain absence of red and a definite presence of pale blue). Whatever their normal football allegiances, they are mahoosive Rashford fans now.

Pro-active

One of the things that’s preventing us from escaping from hospital, four months after G was admitted for a week-to-ten-day stay, is a lack of the right equipment to care for G at home. (We are also undersupplied with suitably-trained people, but that’s another story.) Part of the problem is being in a hospital miles away from home: equipment will have to be provided by our local CCG, which uses different suppliers from the hospital, so getting the right thing prescribed is a tedious business.

Some stuff has been organised quickly; hospital therapists have contacted the the local-to-home services and got them to arrange for the local-to-the-hospital outpost of the CCG’s suppliers to come in, hand over the goods, do the training, and then G’s Papa hauls everything back to our house after weekend visits. But for one piece of equipment, we were sent an appointment letter for a clinic assessment in the next town over from where we live. Obviously we can’t get there while G’s in hospital miles away and not allowed off the ward, so I phoned the clinic and said, if I get the hospital therapists to assess G, will you take their findings and use them to provide a suitable bit of kit? The clinic therapist seemed amenable, so I asked the ward staff to arrange a consultation with the hospital equivalent.

That was ten days ago, and nothing has happened since. I’ve made enquiries, and received reassuring noises, but by yesterday, I was beginning to get irritated. Wednesday’s nurse claimed to have made several phone calls during the day, without ever getting an answer.

“Where is the therapy department office?”
“I think it’s on the lower ground floor, on the outpatients side, near medical photography.”

I trotted off downstairs, across the enormous central lobby, and down more stairs to the basement level. A corridor was signposted for Therapies, and I followed it along, around a right-angle, and towards a glass door leading into an exterior light-well, where dead leaves and other lightweight rubbish swirled in a mini-tornado. Just before the glass door, a wooden one on my left bore a sign proclaiming it to be the Therapies Office, so I rapped on it. It was opened by a youngish chap in a uniform tunic.

“Hello, is there a therapist I could speak to, please?”

He ushered me in and led me over to a woman in a mauve uniform, who was seated at a computer workstation. I explained that I had come to see if it was possible to get an urgent assessment appointment for Grenouille, to help expedite discharge, and once I’d explained what was needed, the therapist said, “Just make a request via inpatient referrals.”
“I thought the ward nurses had already done that. Could you check if it’s on the system, please?”
“Can’t you do that?”
“No, I don’t have access.”
She looked simultaneously confused and horrified. “What? Don’t you work here?”
“No.”
“So who are you, then? What are you doing in the office?”
“I came to find out what had happened with G’s assessment and your colleague invited me in. I’m G’s mother.”
The therapist’s expression suggested that the sky had fallen on her head and she was about to pass out from the blow.
“You’re just a parent?”
The woman at the next workstation over, in the dark-blue that denotes a senior staff member, turned round at that, with a look on her face that said, ‘I can’t believe I’ve heard you say that, you utter numpty’.
“Not just a parent,” she said, mimicking the therapist’s intonation reprovingly. “Never ‘just’ a parent!”
The mauve therapist now looked equal parts embarrassed and annoyed.
“I still need an inpatient referral,” she said.

I went back up to the ward and found the staff nurse sitting behind another computer terminal.
“Nursey, my lovely, could you check if there’s an inpatient referral for an assessment for that piece of kit we were discussing?”
He rummaged for a bit.
“Oh, no, there isn’t.”
“Could you do one now, do you think?”
“Um, yes, sure, what would you like it to say?”

I thought back to my days of dictating local authority reports for council meetings, and gave him a five-sentence summary of G’s situation and needs, emphasising the urgency of the referral. He typed it in, I corrected his misspellings, and off it whirred into the ether.

Possibly, my very official-looking ‘Hello, my name is…’ badge, which I acquired in a fit of indignation after the MDT where everyone got referred to by name, with the single exception of ‘Mum’, helped throw the therapist, particularly as I wasn’t wearing Katherine Runswick-Cole’s accompanying ‘Don’t Call Me Mum’ badge. (I’ve saved that for MDTs.)

The whole episode does say a lot about the hierarchical nature of hospitals, though. I have a theory that hospitals still have a hangover from being organised on quasi-military lines, owing to their modern roots in Florence Nightingale’s irruption into the Crimean War. Indeed, the whole NHS arguably suffers from the same condition. Of course, Miss Nightingale was perceived as a great disruptor in her time, but her ways of organising got co-opted into hospital provision during two world wars, and the NHS itself, born in the aftermath of WWII, had many staff who’d been in the Services just a few years earlier. The initial assumptions still, I think, trickle through. For all the talk of patient-centredness, there’s a continuing expectation that if certain people say, “Jump!”, other people will say, “How high?”; and of course those other people are never, ever allowed to say, “Jump!” themselves.

I have no regrets at all about saying that I am not built for jumping. Never have been; even when I did ballet classes as a child and teenager, and was considerably more slender than I am now, no-one could have accused me of having an excess of ballon. On the other hand, I will cheerfully put my hand up to being a motormouth. I take pride in my ability to make good use of my voice. In my opinion (which is the only one that really matters to me, apart from G’s and P’s) I am ROCKING pro-active caring. Anyone muttering, “Pushy Mum,” can get in the bin.

Music: The Food Of…?

Facebook rightly has detractors, but without it, this little gem would have long since been lost. Today’s Facebook memory, from about a decade ago:

G wanted to listen to my iPod in the car today; E was helping find the track that was wanted.

E: “So, what do you want to listen to?”

G: “Shepherd’s Pie.”

What can I say? Maybe, “Don McLean, eat your heart out”?

https://t.co/A8800EcEgD

Adulting.

Tags

adult LD services, assessment, care in the community, Local Authorities, NHS, true stories

So cheesed off. It’s the longest day of the year and I think I can say without fear of contradiction that the gold-to-tailings ratio of events chez Chrome in the first six months of 2019 has been notably poor.

Between Christmas and Easter, Grenouille had two bouts of gastro problems that put every other body system out of kilter, and resulted in a fortnight of bed rest each time. Bed rest for G means next to no rest for me; as the only adult in the house, Monday to Friday, I get to do 24-hour lone-pilot duty. For a whole month. Yippee.

The run-up to the Brexit-that-didn’t in February and March was hideous. Along with hundreds of thousands of other Britons, G’s continued existence relies on European-manufactured medicines whose supply could not be 100% guaranteed in the event of a no-withdrawal-agreement crash-out. One of the most discouraging things about it, was Brexiters among the people I’ve thought of for decades as friends, telling me to stop drama-queening and whinging on, it would all be ‘fine’. It didn’t seem to matter to them that I had done the research on current stocks, usage and likely blocks to replenishment, and was genuinely frightened for G’s life if there were to be chaos at customs and gaps on pharmacy shelves.

In the last week before 29 March, I felt physically ill with apprehension. The news lurched from the one million march, via a failed Chequers summit, cliffhangers of indicative votes, to desperate resignation-for-a-deal offers from the Prime Minister, before a last-gasp third meaningless ‘meaningful’ vote – on (non-)Brexit day itself – put leaving off for another month or two. I lurched from feeling sick with fear, to feeling sickened with relief, knowing that it would all come round again in May, or June, or October.

G is expected to have some major surgery in the nearish future. It was supposed to happen last year, and didn’t, and then it was supposed to happen in the early part of this year, and hasn’t, and at the rate we are going, it may not happen by Christmas either. However, its alleged imminence has meant that we haven’t been able to plan anything. Holidays, work trips, visits to friends and family, have all been put on hold or organised in a last minute scramble. It’s an unpleasantly stuck-in-limbo way to live.

E came home in April, for the week before Palm Sunday. I drove him back to university and returned home feeling cramped and numb after the long round trip. The next day, I could not feel my right leg at all from the waist downwards and my left leg was without sensation down the back. I could still walk, but my proprioception was badly off. My legs felt like your face does after the dentist gives you an injection for a filling – movable but dead. The GP told me not to drive any more and referred me to the hospital for an MRI and ultrasound scans. I spent the whole of Maundy Thursday as a day-patient on the orthopaedic ward, feeling somewhere between prematurely aged and ridiculously juvenile, as all the other women in my bay were in their 80s and 90s. After enduring a lot of poking and prodding, two claustrophobic passes through the scanner (being maddened by the beat of reggae played through the headphones clashing with the unsynchronised ‘Whum-whum-whum’ of the machine) and a remote consultation with the regional neurocentre, I was diagnosed as having half a dozen ‘dehydrated’ and bulging discs in my neck and lower back pressing on various nerves.

I asked about physio. You have to self-refer these days, a complicated process involving a massive online form and random appointment times. I can’t do random; events have to fit into G’s timetable, or they don’t happen, so I spent a couple of weeks’ Carer’s Allowance on three 20-minute visits to a private physio instead. Two months and a lot of exercises later, I just have numb soles to my feet, a very sore right knee and a healthy aversion to carrying heavy shopping.

During the Easter holidays, the transition social worker and a commissioner from the CCG came and did an initial assessment of G’s future care needs. They decided that a full assessment for continuing health care was needed, and came back in the May half-term, with another nurse, to do a full assessment. Three and a half hours of trying to explain all G’s healthcare needs, and it barely scratched the surface. The outcome arrived ten days ago: a resounding ‘No’.

Unfortunately there are some things that G needs help with, on a daily basis, that Local Authority social care workers simply will not be permitted to do. Even the medical respite Health Care Assistants are not allowed to do them, only registered healthcare professionals (i.e. nurses or doctors…) and, of course, good ol’ Mum and Dad. So the decision needs to be appealed, and guess who has to do it? Not the transition social worker, who, you would think, would have a far better idea of these processes than I. Nope, the whole shebang has been dumped in my lap, while the social worker, jammy besom, has swanned off on holiday.

I put out a slightly panicked appeal on Twitter and got some very useful feedback (thank you, peeps). I contacted a disabled people’s support charity and a solicitor. I compiled a list of relevant legislation, statutory guidance and case-law, tracked it all down on the Web and read grimly through it. It was like being hurled back fifteen years to when I was desperately researching Statements of Special Educational Needs, up against the deadline of G starting school, except this time my deadlines are a lot shorter. I got a snakes-and-ladders feeling that I’d slid right down the massive python that spans the board from 99 to about 8.

And today, on the longest day of the year, the first properly sunny day we’ve seen for well over a week, I sat down in front of the computer, with about 23 tabs open in the browser, and piles of paperwork all over the desk, and spent the best part of eight bloody hours composing a long appeal email. Finally, it was finished. I went to make myself a hard-earned cup of tea before G came home, and in the ten minutes I was gone, Windows decided to do a software update and restarted the computer. Without saving my as-yet-unsent email. I stared at the screen in disbelief. I rummaged in the ‘Draft’ and ‘Deleted’ folders, but I had been working on the email offline. It was gone forever.

A key rattled in the door and G came in from College.

I burst into tears, big gasping sobs and howls. G was, not unnaturally, highly alarmed, and did not find my explanatory wails in the least reassuring. I babbled apologies, but I could not stop crying. G presented me with the phone: “You need to call Daddy.” I keened down the line at P for a bit, but he was struggling to make sense of the bawled and mangled syllables that assaulted his ears, and in the end I told him I wasn’t fit to be talked to and hung up. G propped the iPad in front of me, a favourite song already open in YouTube. “Music might help, Mum, it calms me down when I’m sad. Would you like a hug?” I accepted the hug, and listened to the songs, and after a while felt the misery and fury begin to recede. I still couldn’t remember a single thing that I had written. I knew there were six heads of argument, but what they were I had no idea. Every single one of them had vanished. My head felt as empty as a blown egg.

Slowly and methodically, I began saving the URLS on the open tabs and closing them down. Couldn’t face trying to reconstruct a whole day’s work until I’d had some time off. I stacked the paperwork and put it to one side. I looked out of the window at the sunshine on the garden and thought of cooking and the various other chores awaiting my attention, and then I thought, what the hell, and opened up the Spider Solitaire. I am, I thought, sick to bloody death of adulting, I’m going to be mindless and irresponsible for a bit.

I was halfway through the second game when G came in and plonked a pink post-it note on my desk. I deciphered the lopsided writing and thought, whatever anyone may want to say about G’s academic accomplishments, there’s no denying that my Froglet has Mensa-level emotional intelligence. G’s 18th birthday is still a few months off, but the adulting thing?

Nailed.

(Mum (k)now how feeling but never give up it is hard).