05 Fri Apr 2019
Posted in Uncategorized
G: Mum, can I have a peperami, please?
Me: Yes, sure, help yourself, they’re on the second shelf of the fridge.
G (gleefully): I got a hot one. I think it’ll help with my cold.
Me (puzzled): I know chilli is supposed to be quite good for you, but I’m not sure it has specific therapeutic effects on the common cold?
G (patiently, as one explaining to the hard-of-understanding): It’ll make my nose run and then I can get rid of the gunk.
*****
*****
09 Wed Aug 2017
Posted in Uncategorized
Tags
#justiceforLB, Connor Sparrowhawk, GMC, High Ordeals, JusticeforLB_GMC, learning disability, medication, mothers, NHS, preventable deaths, Sloven Health, true stories
Revolting reminder yesterday of the complete lack of empathy and human kindness manifested by LB’s so-called Responsible Clinician, via her brief, at his inquest.
The psychiatrist, Valerie Murphy, is up in front of the GMC’s fitness-to-practice Panel this week and next. Confusingly, the GMC has decided to refer to LB neither by his name, Connor Sparrowhawk, nor his nickname of LB, but as ‘Patient A’. There’s probably a whole other blogpost in there about the effect and intentions of this depersonalisation, but right now I am busy with other things.
The full list of allegations runs to four pages (thanks and acknowledgement to George Julian for posting these).
On a first count, there are 55 separate allegations there, of which only the first does not allege misconduct. But the effect of 7 (i) and 7(ii a-c) is to multiply the accusations in 7(a)-7(f). Item 7 contains 24 separate allegations of misconduct, giving a grand total of 68 allegations of individual instances of Murphy’s care of LB falling below adequate standards.
Of those 68 allegations, Murphy has admitted 30, which are accordingly found proven, but contests the remaining 38. Looking at the matters admitted to, they are either procedural failings (not arranging a best interests meeting, inadequate record-keeping) or related to Connor’s epilepsy. The ones she is contesting are the mostly psychiatry-related ones: assessment, diagnosis, treatment and medication, including the whole of that multiplex Section 7.
The inference I draw from this is that she intends to assert that her treatment of Connor as a psychiatric patient was unexceptionable, that its poor documentation was down to faults in the system beyond her reasonable control, and that his physical health was not her responsibility.
At Connor’s inquest, she was already citing system chaos, for example on the morning of Day 6:
VM: I can’t remember what was seen or discussed at that meeting, but I remember it as quite chaotic..
11.05 AS asks who those minutes wld be sent to? VM: Wouldn’t know. AS: Do minutes of CTM meetings find themselves in patient’s medical records? VM: Yes, they would. AS: Would members of the team have a duty to ensure those records were accurate as medical professionals? VM: It depends, we were struggling w RiO, the Chair would read and confirm them.
(From @LBInquest tweets)
Now, I’m all for Southern Health management being made to shoulder their share of responsibility. It was painfully obvious at Connor’s inquest, that the detached and indifferent nature of Southern Health’s oversight of Oxford services was itself probably well over the line of neglectful, leaving staff demoralised and demotivated. But Southern’s flaws, however egregious, do not excuse a clinician failing in her direct duty to a patient.
The failure properly to treat Connor’s epilepsy is catastrophic on its own. Psychiatrists are medical doctors, and all medical doctors are required first to train as generalists before they specialise. Moreover, Murphy is a specialist in the psychiatry of learning-disabled people. Given that epilepsy is commoner among learning-disabled people than it is in the general population, she should have been well aware of epilepsy in general. And, given the information that came into STATT with Connor and the subsequent additions to that information offered by his family, she should have focussed on epilepsy as a difficulty of Connor’s in particular. Instead, she dismissed it, and continued to do so.
On Day 5 of LB’s inquest in 2015, she insisted that “there was no evidence of seizure activity during LB’s admission”, because “two instances that were explored as potential seizures….were ruled out”. This was in spite of clear and urgent warnings, both oral and written from LB’s mother that she had seen signs of seizure activity – drowsiness and a bitten tongue – while LB was in STATT. Now, it seems, Dr. Murphy has folded on the presence of epilepsy, in the face of the inquest findings, although she apparently continues to claim that its management was not her responsibility. Oddly, she also still appears to contend that she obtained a history of Connor’s epilepsy that included whether seizures made him tired and need to sleep. If she had done so, why did she then ignore that he was drowsy at unlikely moments?
My general feeling for the other contested allegations is that these are areas where it is possible for Murphy to argue that she did the things she should have done; it is merely her recording of them that is defective. Slap-on-the-wrist stuff, not striking-off material. Whether those arguments will seem plausible, is likely to be largely down to the credibility of Murphy herself. She needs to present herself as competent, knowledgeable and benevolent, but overworked and harassed.
Hence, no doubt, the utterly disgusting hounding of Connor’s mother in front of the Tribunal yesterday. The interactions of Richard Partridge, Murphy’s barrister, with Dr. Ryan, were not so much a cross-examination as an attempted crucifixion. He did everything he could to portray Dr. Ryan as incompetent, ignorant, uncaring, shiftless and vindictive, in order to improve his client’s chances of appearing the reverse. It was exactly the same strategy as the one used at Connor’s inquest by Murphy’s then-counsel, Alan Jenkins. It failed then and it failed this time, for the same reasons as before. Firstly, Dr. Ryan is a person whom it is difficult to impugn: she has always been shrewd, informed, capable, industrious and warm; and now she is showing tremendous courage in the face of loss and grief that would overwhelm most people. I don’t think a Panel with even a modicum of intelligence is going to fail to notice the discrepancy. The inquest jury certainly were not fooled. Secondly, and far more importantly, Dr. Ryan’s personal characteristics are completely irrelevant to the question of the adequacy of Murphy’s care of Connor. Whether Murphy found Dr. Ryan’s outspokenness uncongenial, difficult or even frankly insufferable, that was still no excuse to ignore the information she contributed about Murphy’s patient, Connor.
That both Murphy’s briefs have taken this line of personal attacks upon the patient’s mother, suggests to me that the initial steer in that direction comes from Murphy herself. It seems like a risky strategy. It’s going to be hard for her to come across as competent when she has so seriously misjudged Dr. Ryan as well as Connor himself; or as benevolent when she has allowed her barristers to stick so many unwarranted knives of sneer and innuendo into a grieving mother, and then twist them.
The nadir yesterday came when Partridge read out Dr. Ryan’s impression of Murphy as ‘dismissive, arrogant and distant’ and told her it was ‘very upsetting for Dr. Murphy to hear any patient’s relative describe her as such’. Dr. Ryan asked for a recess at that point:
Nevertheless, she returned to display the intellectual rigour that #JusticeforLB’ers have come to know and admire. Pursuing an irrelevant line of questioning on the blog, Partridge tried leading his witness: ‘The tenor of the blog was critical, in a neutral term’.
“I don’t think ‘critical’ is a neutral term,” rejoined Dr. Ryan. “The blog was an honest account of our experience.”
Partridge continued in a similar dismissive vein, referring to ‘the tongue-biting incident’. When told by Dr. Ryan that it was not an ‘incident’ but a seizure, he went DefCon1 on the patronisation: ‘I know that you feel it was a seizure.’
Dr. Ryan did not let him get away with that, either. “It was a seizure.”
I really don’t know what Murphy hopes to gain by permitting or requiring her counsel to act thus. If anything could confirm the accuracy of Dr. Ryan’s negative summation of Murphy’s character, it surely has to be such a display of tone-deaf, compassionless persecution. To ‘dismissive, arrogant and distant’, most observers would probably add, ‘egocentric, devoid of empathy, disrespectful and cruel’; in short, thoroughly unsuited to being a consultant psychiatrist.
An irresponsible clinician.
26 Fri May 2017
Posted in Uncategorized
I’ve just spent 2 hours making phone calls to a dozen different people, trying to make sure that G will be safe during an upcoming hospital admission. My phone line must be white-hot by now and it’s a good thing we have hard floors, or I’d have worn the carpet down to the canvas, pacing back and forth. I have to stand and pace when I’m making this sort of phone-call; I need to keep my energy levels high in the face of incomprehension, it’s-not-my-job, and we-don’t-do-that. Because I understand all too well what may happen – and what is likely to happen – if I don’t persuade people to see things from “just Mum’s” viewpoint, it becomes my job, and I have to do that. All the while, there is a constant worry at the back of my mind, that if I rub someone up the wrong way, I may end up tarred with the ‘inappropriate involvement’ brush from paintpots like this recent case (where censure was warranted) and #LBInquest (12.14 onwards) (where it most definitely was not).
It is, as they say on Facebook, complicated. Specialisation applies to administrative as well as clinical staff. The admissions team schedules theatre slots, but you have to speak to the ward about bed spaces and to the departmental teams about staff complement. The procedure that G is about to have is normally ‘day case’, but G’s complex interlocking medical conditions mean a three-day stay for pre-op stabilisation and post-op observation. In turn, that means that the surgical team need to co-ordinate with respiratory and gastro, that an HDU bed must be booked, that the anaesthetics team need to be reminded that they have been warned of the extra wrinkles.
It’s very obvious from the letter advising me of the provisional admission date, that none of this has got through to the admissions team. It’s a standard day-case admission letter, and if I felt inclined thus to waste my time, I could go through it furiously underlining every other word and muttering, “Wrong,” “Nope,” “Ain’t happening,” “In your dreams and my nightmares, sunshine”.
Instead, I burn through my phone bill, a deliberate smile on my face to help me pour bouncy-walk-induced positive energy down the line, talking to clerks, secretaries, nurses and answerphones, to get the whole thing orchestrated. Each time, I repeat all the name, rank and serial number information with enthusiasm, as if I couldn’t possibly think of anything else I’d prefer to do on a summer morning. I sympathise with technology glitches, make jokes, throw in a compliment here and fulsome thanks there. I note numbers, names, who has agreed to do what.
Now, I have to wait and see (and maybe make a few follow-up phone calls in a week or 10 days). I did all this four months ago, only for the procedure to be cancelled at the last minute. It was scheduled for February half term and too many staff were away, taking winter holidays with their kids. Of course staff need a work-life balance, their children deserve holidays, and I hope every last one of them had a thoroughly enjoyable time.
It’s just …. well, some of us get to go ski-ing. And some of us feel we are permanently skating on thin ice.
21 Fri Oct 2016
Posted in Uncategorized
More repeat-prescription mayhem. G has had a bit of kit routinely updated, and the new machine needs different consumables. Our GP’s surgery, like all its peers, is under the cost-cutting cosh, and has been leery, lately, about the quantities of expensive consumables that G requires on a monthly basis. As it happens, I had ordered an extra quantity of these particular consumables in August, to see us through the holidays, and we had rather a lot still left the following month. So when, in September, I wrote the request for the repeat prescription to be altered, I added that in the interests of reducing waste, I would carry on using the old kit until all its consumables were finished, but in the meantime, could they please add New Consumables to, and remove Old Consumables from, the repeat prescription list.
Unfortunately, someone at the surgery seems to have taken this as a cue to spring-clean G’s repeat-prescription list of other things too. G is prescribed Emergency Medicine, which is there to be used if other things fail. It’s not something G can afford to be without, but it is, thankfully, not something that needs to be used very often. So we need Emergency Medicine to be on the repeat prescription permanently, but unless G has an unlucky spell, we only have to replenish it when the stock goes out-of-date. The diligent doctor who altered the consumables prescription seems to have removed anything that hadn’t been ordered in the previous three-to-six months from the repeat.
So I wrote another letter, explaining why Emergency Medicine needed to go back on the repeat, even if it is only ordered once every eighteen months or so, and handed it in along with the October requests. And, with dispiriting inevitability, when I went to collect the prescriptions, the Emergency Medicine was there, but nothing else.
The pharmacy is in the ground floor of a big block that also houses the surgery, several other practices, and various community services, so I headed out to the stairs and went up to the GPs’ floor. The receptionist was adamant that the prescriptions had been issued, so I went back down again… nope. Back up to the GP’s once more, where further enquiries revealed that prescriptions had indeed been issued – but not since mid-September. The receptionist promised to get the October requirements organised as soon as possible, and I trekked back down to the pharmacy, where I buttonholed Sharon, the lovely pharmacy assistant who has been an invaluable ally in previous battles, and asked if she could give me a call when the prescription came through.
Sharon gave me The Look. “Stuffed up G’s prescription again, have they?” she said.
“Er…”
“C’mon, you need to come and speak to my mate Brónach. Brón!” She led me over to another counter. “Brón! Can you take this lady’s details please and call her when G’s prescription comes in? They upstairs have made a pig’s ear of the repeats and she’s been up and down like a bride’s nightie…”
Brónach looked horrified. “Shazza! You can’t say that in front of a customer!”
Sharon flapped a hand dismissively. “I can in front of this lady. Known her for years. Not the shockable kind, are you, duck?”
I smiled and shook my head. I didn’t mention that the version of the saying with which I was familiar was even cruder. Echoing down a decades-long tunnel, from the schoolroom centre to my mind’s ear, I could hear the broad Scots accent of salty-tongued ‘trainee’ Maggie , commenting derisively: “… up an’ doon like a hoor’s drooers”.
13 Wed Apr 2016
Posted in Uncategorized
Tags
adult LD services, appropriate vocabulary, care in the community, kindness, learning disability, medication, voices of disability
I must be spending far too much of my time reading off electronic devices these days, because I was thumbing through my copy of There’s Always Something or Other With Mr. Neary, and when I had read the 1 September 2012 entry, my first impulse was to start jabbing the page with a forefinger to add a comment. Oops.
One of my more eccentric computing tutors used to say that if paper had been invented after the silicon chip, everybody would think it was the bees’ knees. “You don’t need batteries! You can build your own basic matrix from plant fibres! You can write to it with a carbon stick! And the refresh time is up to a thousand years!” As this was well before the invention of the tablet computer, he didn’t add, “But however hard you poke at the side of a book, you won’t find a backlight for reading under the bedclothes!” I have to remember that for myself.
Anyway, the piece in question is about Steven Neary’s twice-a-year visits to the psychiatrist. The trick-cyclist seems to be a rather unpleasant fellow; when Steven proffers his hand, as he has learned it is polite to do, the psychiatrist refuses to shake it. He then avidly notes the distress that this can cause Steven and blames Steven’s resulting behaviour on his father and support workers for ‘failing to set boundaries’.
If Mr. Neary senior remonstrates with him, the psychiatrist goes into Sly Game Playing Mode: “It looks like the conflict increases your anxiety, Mr. Neary”.
I want to ask Dr. S., “That being so, why are you provoking conflict? What are you getting out of making Steven miserably disoriented and his father stressed? It doesn’t seem a very professional way to act, more a sociopathic/sadistic one. Quite apart from professional considerations, to refuse to co-operate in a conventional exchange of courtesies is simple oikish bad manners. You’re being plain rude.”
Steven’s father once tried to let Steven down gently by suggesting that Dr. S. had a sore place on his hand, but it didn’t help, as Steven then wanted to see the scab. I have a fantasy in my head of Mr. Neary telling Steven the truth, and reminding him in the consulting room: “Dr. S. doesn’t shake hands, remember, Steve? Dr. S. doesn’t shake hands because…?”
“Because he’s an arsehole, Dad.”
21 Tue Oct 2014
Posted in Uncategorized
“The noun doesn’t matter after an adjective like ‘multiple.’ Nothing good ever follows ‘multiple.‘”
~Terry Pratchett, Guards! Guards!
Saw a series of truly shocking tweets at the weekend. Bex, who had just had her third round of major surgery for breast cancer, and still had wound drains in situ, was left to bleed all over herself and the floor of the hospital in which she was an inpatient.
Nurses competent to manage the drains refused to attend her. The ward she was in wasn’t the one where she’d had her operation; the pain and trauma surrounding the surgery had triggered a seriously depressive phase of her bipolar disorder, and she had been admitted to a psychiatric hospital for safety. The district nurses who would have visited her at home to do her wound care refused to come into a ‘ward environment’, and the psych ward staff did not have current training in management of surgical drains. Brain-melt territory. The best the psychiatric ward staff could offer (and in the circumstances, I feel this was laudably creative and person-centred problem-solving) was to escort her on a trip to A&E in the main hospital on the same site, if the district nurses remained obdurate.
“I mean, it’s bad luck to have Bipolar Disorder AND cancer,” tweeted Bex, “but I do, and I should be treated as a whole person.”
J responded, ” I’m slightly astonished. What do they expect you to do precisely, park one to the side?”
To my regret, I was not in the least astonished. Horrified, yes, but unsurprised. Grenouille has been admitted to a ward for planned treatment of one condition, and I have warned the team in advance that they will need to manage what medicine so charmingly dubs ‘co-morbidities’. I have written letters explaining as succinctly as possible what needs to be done for said management. I have done my very best to to get the respiratory team in Admitting Hospital talking to the gastro team in Outpatient Treatment hospital so that Admitting Hospital has its information from reliable fellow-professionals instead of a mere, notoriously unreliable ‘Mum’; only to be met at the ward nurses’ station with blank stares when I tentatively enquired about the gastro provision.
‘Parking one to the side’ seems to be exactly what is expected, or alternatively, “You may have multiple problems, but we are only here to look after one of them”. As though it were possible for G’s other damaged organs to jolly well buck up and work properly again for the duration.
And because, if I’m honest, I wasn’t actually expecting anything different, however much I might have hoped for it, I had come prepared with not only all that I would need to camp at G’s bedside during the incarceration (ten days, as it turned out) but with a great clanking bagful of all the equipment and instructions that we use at home. I had to lodge all this with the ward staff and ask for it to be liberated whenever G needed to use it, but at least it was there and could be used on G’s schedule, rather than on the ward schedule, which in all probability would have caused G to become seriously unwell after a day or two.
In the cot next to G was a four-month-old baby who had spent her entire life in hospital. She lay on her back, staring at a blank ceiling, and was only handled when nurses stopped by to change her nappy and clean her, or change her NG tube and feed bag. Occasionally they would come and prod her – “C’mon lazybones, you need to breathe” – when her desaturation alarm went off. Sometimes the sats monitor would clong for minutes at a time before anyone came, and on several occasions, especially at night, I got up to retrieve an oblivious nurse from the far end of the ward. I worried like hell about that baby, and not only for her physical well-being. A four-month-old needs movement, stimulation, conversation, as well as food and sleep. What would all this inactivity do to her proprioceptive system, to her social interaction, to her mobility, later on? My arms ached to pick her up and let her get a different view of the world, to make her part of a normal three-way chat between her, G and myself.
Of course, I didn’t. Even talking to her while standing in G’s bedspace wasn’t appropriate – I wasn’t staff or approved volunteer. All I could do was hassle the nurses when the alarm went off, and I tried to be choosy about when I did that, because I noticed that if the nurses had to respond too frequently, they became impatient – with the baby.
Near the end of G’s stay, the baby’s parents came to visit her. They picked her up as soon as the nurses would let them, and cuddled her for their entire visit. Tears ran down her mother’s face as she and her daughter gazed into one another’s eyes, while the father talked softly to his baby and stroked her cheeks and toes. The baby waved her arms and made little cawing noises. At one point, the mother looked across at me and apologised for causing a disturbance. I told her those were the sort of noises it did my heart good to hear, and asked if I could get them drinks and some food from the parents’ room so that they didn’t need to waste any of their precious cuddle time. Two orange juices and a plate of sandwiches later, the mother had confided that they could only visit once a week, owing to the demands of work, their older children, and the prohibitive costs of travel. “We just want to get her home, so I can do this all day long”, she said. I completely empathised. The duration of her parents’ visit was the only normal interaction that baby had all week. Two hours out of 168.
So what stops hospital health workers from truly caring? After long observation and much thought, I think there’s a relatively minor element of professional high-handedness. I’ve encountered it most acutely with junior doctors, over-eager to bolster their standing, and some long-serving ward staff who expect everyone to fit into their standard model of ‘how we do things here’.
There’s definitely a problem with professional demarcation, aka the silo mentality. As parents, we work across all the health specialisms (plus the education, therapy and care ones). We do it mostly unpaid, mostly self-trained-on-the-job, and on the whole, we make a bloody good fist of it. So it is hard for parents to cut much slack to trained and qualified professionals who can’t or won’t do the same, those who project the reverse-whistle, more-than-my-job’s-worth attitude, even if they don’t actually inhale sharply or say anything. The sort of person who wants you to go home and get yet another referral from your GP, rather than referring you directly across departments within the hospital. At the end of the day, sunshine, my child’s needs trump your professional etiquette in all suits.
But the biggest problem is the dire interaction between staff numbers and time. If a nurse is expected to care for, say, eight patients over a twelve-hour shift, that means that at best those patients can only expect, on average, three hours’ direct care in 24. In practice, they won’t get anything like that – there is paperwork to do, a telephone to answer, visitors to admit, handovers to be managed. Even if there is a ward manager charged with ordering supplies and overseeing the domestic work, the nursing staff still have to spend time on liaison. No wonder they don’t have time to read letters from mothers of patients who have not even been admitted yet. No wonder that as long as a baby is still breathing, then she can be classed as No Further Action Required – and that if she fails to breathe too often, she will be treated as an inconvenience.
Mind you, I still can’t fathom how a unit with five clients and four staff could park his epilepsy to one side and let LB drown in a bath. That’s failing to make time with a furious vengeance.
And I will never understand how a Mental Health Trust that couldn’t make time and provision to prevent a healthy eighteen-year-old from drowning can find the time and the money to invent reams and hours of spin and lies.
15 Mon Sep 2014
Posted in Uncategorized
Tags
institutions, local authority, medication, rights-based provision, Special Needs Education, true stories
Food for thought on why people with disabilities (and their families) need a rights-based approach to provision. And how big institutions will try to grind people down even with those rights in place. A True Story, in the form of a contemporaneous letter, from the year that Grenouille moved up to secondary school. Getting there involved a lengthy journey each day to an out-of-county school, mostly along remote rural roads.
Ah, transport. Bless ’em.
Notification arrives in early August saying that G will be taken to school next year by Such-and-Such taxi company and will need to be ready to rock’n’roll at 8 a.m. No mention of an escort.
So, I phone the transport department.
Me: “Hello, thank you for letting me know about G’s taxi for next year. I wonder, could you tell me please about what is being done to train G’s escort in the necessary emergency health protocols?”
Transport Person: “G doesn’t need an escort.”
Me: “Oh? I went to G’s Statement review a couple of weeks ago, and everybody was in agreement that owing to medical needs and other difficulties, a suitably trained escort was vital.”
TP: “They (meaning the Authority SEN team) haven’t told us that. I’ll have to contact them.”
Me: “Thank you. On the assumption that my information is correct, can you tell me please what sort of training the escort will get?”
TP: “Oh, we don’t train escorts. We used to, but under our new policy, the Authority doesn’t do that.”
Me: “Indeed? So what happens if a child becomes ill on the journey?”
TP: “The driver phones 999.”
Me: “But my child carries diagnostic kit and treatment in case of feeling unwell. Are you saying that instead of helping G to use it, the taxi people will call out an ambulance or paramedic from an already overstretched major-emergency service?”
TP: “Yes.”
Me: “Well, quite apart from calling 999 being a ridiculously inappropriate use of public resources, particularly since it may well occur several times a week, may I point out that this is a safeguarding issue? If my child doesn’t get treated until a paramedic makes it to wherever along Rural Road the taxi is, there is a risk that G will be a lot more unwell by the time of getting treatment than if treated straight away. Doing nothing will actively contribute to making the illness worse, and G can become seriously unwell very rapidly.”
TP: “It’s up to you or the school to make sure G’s OK to travel before leaving.”
Me: “Indeed I will, and I am absolutely sure the school will, but it’s a 45-minute journey and that’s plenty of time for G to become ill, even if everything’s fine on setting off. G needs someone in the car whose principal responsibility is to help in case of illness.”
TP: “Well, we can make you a parental grant. That’s like, a mileage allowance, and you drive.”
Me (starting conscious deep breathing): “I’m afraid that’s not acceptable.”
TP: “Oh, do you work? <sounds of rustling paper> It doesn’t say anything about that here.”
Me (on a breath about the volume of an Olympic swimming pool): “Well, not that it’s relevant or any business of the Authority’s, but I can assure you that I work extremely hard, and taking three hours out of my day Monday to Friday to shuttle my child to and from school is not possible. And as it happens, one of the jobs I do is to get up to check on G’s health during the night, and provide treatment if need be, and after nights when I’ve had only three or four hours’ sleep, I’d be in no fit state to drive to Schooltown and back twice in a day.”
TP: “That’s all we offer.”
Me: “Look, if you won’t train an escort and I won’t provide parental transport, you HAVE to find another option. You know as well as I do that you have a statutory duty to arrange APPROPRIATE transport for children with disabilities.”
TP (reluctantly): “Well, the only other option is a private ambulance.”
Me (with unsuppressed incredulity): “Really? That sounds unbelievably over the top for a child who just needs help with monitoring and maybe taking some simple-to-administer medication – but if it’s the only appropriate thing you have to offer, I’ll take it. Thank you.”
TP (panicky): “Er, um, er, er, I’ll have to…”
Me: “No, seriously, I’ll take it. No problem. Look forward to getting the revised notification letter. Byeee!”
Put the phone down and laughed until my middle hurt. Didn’t hear from them during the next few days, and didn’t dare call back until I could feel confident of doing so without giggling down the phone line. Made my week, so they did.
But when I still hadn’t heard after ten days, I wrote it all down and sent a letter of complaint to the Authority’s SEN team. They folded. Of course they folded. Game-playing gets kinda difficult when you have no cards in your hand. It was agreed that G would have a taxi and a trained escort, and that I would facilitate training alongside a local paediatric nurse.
Got back home late evening on the last Friday in August, after a fabulous fortnight’s holiday in Cornwall, to find a message on the answerphone, date-stamped that afternoon: “Hello, this is Claire from SEN Transport, I’m just checking to see that you know about the training meeting for G’s taxi escort on Monday, please phone me on this number: xxx”
So at 9 a.m. Monday I hit the phone. Claire is not in the office. No-one in the office knows where she is. She has not left any notes of her schedule. Nor do they know when or where the meeting is, although they think she may be on her way to it. And of course they have no idea what contribution, if any, G and I are expected to make to the meeting. I deep-breathe like a steam-engine and persist, until at 9.35 I finally learn that meeting is at 10 a.m. on the paed. ward of Local Hospital.
After a mad (and, I regret to say, slightly sweary) scramble, arrive on the dot of 10 with G in tow, but paed. ward does not know which room the meeting is using…. although they are super-helpful about finding out. Swan in five minutes late: “Hi, this is G, who I’m sure would appreciate the offer of a chair. I’m Kara and I’ll be back just as soon as I’ve managed to locate some change to feed the parking meter before my car gets clamped.” Wish I’d had a camera to record the expressions!
Return to find G ensconced, but nobody has thought to make a space for me, so I stand and glare until someone cops on. Then suggest saccharine-sweetly to Claire that if one is making in-absentia arrangements near close of business on a Friday for an event near start of business the following Monday, it makes sense to give the absent people FULL information? As in, if one is disconcerted by an answerphone, the sensible and courteous thing to do is ring off, collect one’s thoughts and full information, and then ring back and leave a second, comprehensive message? Nobody minds a second message on the answerphone, but being forced to do a sort of by-phone, against-the-clock scavenger hunt for info first thing on a Monday is, well, let’s say, unnecessarily irritating? Sure a different approach will be greatly appreciated! Claire pinkens, squirms and mumbles.
After which, the children’s nurse gives Claire and some other random Transport manager bod (still not sure who he was!), the two drivers (one regular, one relief) and two escorts (ditto) the standard emergency health protocol 101, with curlicues from G and me.
The escort is brilliant – lovely glam-granny type, turns up on the first day armed with a tote full of things like clean, damp flannels sealed in a plastic bag, and a roll of kitchen towel, so she can do cleanups if necessary. Simples! – not nuclear physics!
The cream of the joke for me, though, comes later when I hear from the SENCO that as a result of my pointing out their statutory obligations, the Authority has had to rewrite its SEND transport policy so that it properly supports all children with any disability. Bahahahahah! Serves ’em right, the chancers!
Hope that’s brightened your day a little, H (and all of you). I am so OWNING these Supermummy knickers at the moment!
Love, hugs and gales of righteous laughter
Kara
02 Wed Jul 2014
Posted in Uncategorized
A question – or series of linked questions – has been running through my head, about why Connor’s epilepsy and Nico’s musculo-respiratory difficulties were so disastrously ignored, and why Steven Neary’s autism was dismissed as an irrelevance during his stay in the positive behaviour unit.
Was it that, as learning-disabled dudes, they and their physical ailments were discounted? In Connor’s and Steven’s cases, was it that their other symptoms were viewed – and dismissed – as mere manifestations of their supposed mental-health problems? Is it that physical illnesses are seen as things that come from outside and happen to a person, thus meriting sympathy, while mental difficulties are seen as resulting from a failure to manage one’s internal landscape, so that the sufferer deserves only censure for colluding in the causation of their own problem or illness? Or is it just that as people specialise, ‘knowing more and more about less and less’, they can no longer see beyond their own specialism and lose the ability to spot things outwith their narrowed boundaries?
I don’t know what the answers are. But I’m pretty convinced that if a person has a label of learning disability or mental illness, then the attention paid to their physical state tends to be less thorough than it would otherwise be.
I met Richard through my membership of one of the University societies. He had red hair, blue eyes, an ethereally clear tenor voice, an inventive way with wordplay and a keen appreciation of puns, a talent for calligraphy and for creating beautiful, complex monochrome ink drawings with a fine-nibbed steel pen, an enviable turn of speed on his racing bike, a degree in pharmacy, and insulin-dependent diabetes.
He had wanted to read medicine, but his diabetes was of the unstable, swinging-wildly-from-high-to-low-blood-sugars sort that was then (and, for all I know, may be still) called ‘brittle’. The medical schools wouldn’t accept him, even with top grades, as the view was that the stress of medical training was likely to aggravate his condition, and the condition was likely to prevent him from ever taking up a post as a doctor. The pharmacy degree was a second-best option, and after graduating, he decided that actually, he didn’t want to spend his life behind a counter in Boots, checking pills under strip-lights. Instead, he went to work for the City Council’s Leisure Department, running sporting events, which at least got him out into the daylight, although it didn’t particularly tax his capabilities. “I just have to make sure they know what they’re doing, where they’re going – and whether they’re taking sandwiches,” was his cheerfully wry take on his job spec.
Nowadays, most insulin-dependent diabetics will test their blood glucose before every meal, using a smart meter that calculates a dose of insulin precisely tailored to their blood-sugar level, their body’s insulin sensitivity, and the carbohydrate content of the food, but twenty-something years ago, blood-glucose test strips were not available on a GP’s prescription. You either had to buy them (at an astronomical retail price) or cadge them from a sympathetic hospital doctor. Without the flexibility offered by frequent blood testing, the diabetes treatment regime consisted of fixed doses of insulin, and fixed amounts of carbohydrate permitted per meal, and if you miscalculated, you wouldn’t know it until either (a) you did a pee test and found you had been very sugary for the past several hours, or (b) the bottom fell out of your blood glucose and you went ‘hypo’. Richard had a tame hospital medic who kept him supplied with strips, but a decade and a half of the no-test regimen had taken a toll. Having run sugary for months and years, and then having been nagged to rein in his blood-glucose drastically, he no longer noticed hypo warning signs until his blood-sugar was way below normal, and when he did go hypo, it was often spectacularly, complete with staggering walk, slurred words, chalky complexion and an obstinate insistence that there was nothing wrong with him. All his friends knew that “‘M fine! Nothing wrong with me!” was the cue to pin him down and force him to puncture a finger to prove himself mistaken.
Nevertheless, he managed for a long while not to let the diabetes affect his work, hauling himself in on time despite still being groggy from overnight hypos and the terrible nightmares that they generated, and surviving erratic mealtimes by crunching dextrose tablets and swigging sugary fizzy drinks. But when he started having ‘fitting’ hypos, during which his blood-glucose would plummet so rapidly and so far that he would collapse, unresponsive and twitching, work became problematic.
A little earlier, his annual eye check-up had revealed that the the years of high blood-sugars had caused diabetic retinopathy, and he needed extensive laser treatment to cauterise leaking capillaries at the back of his eye. The laser treatment began to affect his sight – “My own permanent private firework display” – and between that and the hypos, he had to hand in his driving licence. Then one dreadful evening, as he sat in the train on the way home, he saw beyond the window a red sunset that had nothing to do with the atmospheric conditions and everything to do with a haemorrhage inside his eye. Further laser treatment, surgery to remove the blood-filled vitreous from his eye and replace it with liquid silicone, another operation on the other eye to repair a detached retina, all failed. Although he could still distinguish between dark and light, he had so little useful vision left that he was registered blind. He had lost his sight, his job, and his ability to draw, write, read, drive and cycle. Now that he could no longer read music, and could not easily move around safely on stage, he also had to give up most of his singing, and with it, most of his social life.
He was assigned a social worker, who, while in many ways a pleasant and well-meaning woman, nevertheless drove him nuts. Herself blind since birth, it seemed she could neither understand nor empathise with the feelings of someone mourning the loss of their sight. Nor, apparently, did it occur to her that Braille – about which she was volubly enthusiastic – was going to be problematic for a person whose fingertips were scarred by years of fingerprick testing and numbed by diabetic neuropathy. About the time that I moved to the south-east of England, Richard got himself onto a Master’s course in computing, hoping that technology would offer some fixes that could help him compensate for his disability, but despite text-enlarging screens, text-to-speech software, and the services of a note-taker and reader, he was unable to complete his dissertation and had to drop out.
After that, it could astonish no-one that he should be diagnosed with depression. He was prescribed the latest in SSRI anti-depressants and offered a course of the newly-popular cognitive behavioural therapy, which left him rueful and exasperated with the psychiatrist, whom he nicknamed ‘Dr. Optimism’.
“I’m his hard case,” he told me, with a soupçon of relish, during a phone-call. “I keep asking him how developing a positive mental attitude is going to help me see better. He says it’ll help me adapt to my blindness and I tell him I don’t want to adapt. I don’t like being blind, so I don’t want to accommodate to it, would he? He says it’s not about him and off we go again.”
“What I’m hearing is that this CBT malarkey isn’t what you want. So, what do you want?”
“What I WANT is to have my pancreas and my eyes working again. I’d SETTLE for being able to do a few useful things and a few enjoyable things. What I GET is isolation, boredom and a patronising git who is telling me in so many words that I need to buck my ideas up a bit.
“I don’t want therapy and I don’t want people throwing pills down my throat to put themselves out of my misery. I don’t want to be treated as though I am the problem, when it’s my circumstances that are the problem. If I’m going to talk, I want it to be to someone who can understand that, which is why I hope you won’t mind if I phone for a rant from time to time.”
“You’ll be welcome.”
I don’t recall if or when he stopped taking the happy pills, but I clearly remember how, over time, his outlook deteriorated. Even down several hundred miles of phone line, the misery was clearly audible.
“I feel really awful. I’m tired all the time, it’s an effort to eat, and even if there were somewhere for me to go, I don’t think I could be annoyed going. They tell me that it’s all psychosomatic, but that doesn’t make it any less unpleasant to live with. I can’t see any good reason for carrying on living. Nothing I do has any value, and I don’t enjoy doing it, so what’s the point?”
I cradled the phone against my ear, feeling my spirits sinking into the horrible empty gulf that had opened up in my middle, and picked my words with extreme care. “I would miss you dreadfully, we all would. But I am there for you very little of the time, and I know the same goes for everyone else. If you want to go, you have the right to go; and with the love and good wishes of your friends.”
“You’d let me go?” he said, disbelief in his voice.
It felt safe to laugh a little. I won’t pretend it wasn’t a little sawtoothed, but I was glad I could manage it. “Well, from this distance I could hardly stop you anyway, could I?” I paused, sought for a tone that would be serious without being solemn. “But look, even if I could, I wouldn’t, not if you get to the point where you are truly sure you’ve had enough. Ever since I’ve known you, you’ve been pushed around by diabetes and blindness and by people you’ve met because of the diabetes and so forth; I hope you know I’m not up for joining in with pushing.”
Very quietly: “Thank you.” Silence.
Hesitantly, I said, “One thing – how would you feel about letting me know in some way if you do decide to go? I promise I won’t try to talk you out of your decision, but I’d like to be able to say a proper goodbye.”
Long pause. “I know you won’t try to stop me, although it’s a delaying tactic, isn’t it?”
“I suppose it is. If you don’t feel able to to make any commitment about it, that’s fine too.”
Even longer pause. “OK. I guess you’ve earned it. I promise I won’t leave until I’ve said a proper goodbye.”
The next phone call I got was not from Richard, but from his parents, who lived in northern England. “He’s not answering his phone. We’ve called the Infirmary, and he isn’t there, so we called the social work department, but they say that owing to confidentiality, they can’t give us any information about him or even confirm that he’s a client of theirs. You know his friends and where he might be likely to go – would you mind making a few enquiries? We’re worried….”
After calling everyone I could think of, to no avail – and after a couple of local friends had been persuaded to go round to the flat and had reported their failure to get an answer to the loudly ringing doorbell – I phoned the social work department myself. By now, it was late in the evening and I didn’t get Richard’s social worker, but the duty cover person, who repeated the spiel about confidentiality, but added, with what seemed to me to be slightly odd emphasis, “If you have concerns that a person may have suffered an incapacitating health problem at home, you need to call the police. They can do things we can’t.”
I called the pollis and had a pleasant chat with the station officer, who confirmed that if no-one was answering at home, the police were permitted to break doors down to see if the person was ill, and to institute enquiries if someone was missing unexpectedly. “Well, as I’ve explained, his family has good reason to worry about his physical health, and it’s not like him to disappear without warning. But you might want to call the duty social worker before you send a team out with a battering ram. I just have a prickle in the nape of my neck which says that fella knows more than he’s willing to tell me; but he might be able to tell YOU and save everybody a lot of worry and trouble.”
The policeman called back ten minutes later. “Ye were richt aboot the social worker. We dinnae need tae go an’ pit the laddie’s door in, an’ Ah can tell ye he’s in whit they ca” a place o’ safety, he just disnae want emb’dy tae ken whaur he is. But dinnae fash yersel’. They lot doon at the social mayn’t be able tae say whit’s whit, but come the morn, Ah’ll be sendin’ one o’ my lads up the road tae — er, up the road tae whaur he’s bidin’ the noo, tae mak’ sure he’s a’richt. ‘S’matter o’fact, Ah micht just be takin’ a turn oot there masel’ and tellin’ the heid high yins there that they need to rethink their confidentiality policy ef’n it means fem’lys huv tae start wastin’ pollis time, settin’ them lookin’ fur folk that arenae really missin’.”
Having noted, as I am sure the canny pollis meant me to do, that telltale ‘up the road’ phrase, I was accordingly unsurprised to get a call from Rigg a couple of days later. In a flat, bored voice, Richard said that Dr. Optimism had become sufficiently worried about his, Richard’s, state of mind and ‘suicidal ideations’ to arrange for his enforced admission, and that he would prefer it if I didn’t share with his parents that he was an involuntary patient. I said I was sorry to have disturbed him, and was it all right to let his parents know that I had spoken to him, but not to let on his location? He agreed, indifferently.
Over the next few months, I received intermittent calls from the Rigg patients’ payphone, which I would call back into. After a few weeks in hospital, Richard’s benefits had been stopped, and coins for the phone were in short supply. He was having a lot of group and individual pyschotherapy, and had been messing about trying to be creative with clay and oil paints in occupational therapy, but he sounded as down as ever.
One day, a call came in, with the distinctive ‘clonk’ at the beginning as the 10p piece dropped at the other end. “Hiya!” said the familiar voice, with a jauntiness that I had almost forgotten.
“Oh, hiya, d’you want me to call back? Usual number?”
“I’m not in the Rigg,” said Richard, with emphasis. “I’m in the Infirmary. Here’s the number.”
I dialled and heard only half a ring before the receiver was snatched up.
“So, what gives? You sound remarkably well for someone who’s in the Infirmary.”
“Had my diabetes checkup. Guess what? My serum creatinine and blood urea nitrogen are through the roof and I’ve got proteinuria levels that mean you could make omelettes from my piss. I’ve just spent the last twenty hours on dialysis and I’m completely bloody knackered, but I feel like myself again. All the crap in my system, all the poisons my kidneys haven’t been filtering out – they’re the reason I’ve been feeling so utterly shite.”
I was too stunned to be able to utter a word.
“And I’ve wasted six months in that fucking hellhole” – his voice suddenly split and the next few words came out as gasps – “While they they tried to cognitivefuckingtherapp me out of being blind and having kidney failure.”
11 Wed Jun 2014
Posted in Uncategorized
Dear Charlotte
Here is the timeline of events from my perspective:
Sunday: Discover device for administering Grenouille’s Very Important Medication is empty. Go to get new vial & find that there are none. Unfortunately, another carer must have changed the vial last time and thrown the box away, or I would have called a fortnight ago. Phone your Medical-Supplies-Company, which is responsible for managing the supply of, and for delivering, this medication. Speak to helpline worker. Told that there is no valid prescription and that nothing can be done as it is Sunday.
Ask to speak to manager. Speak to Matthew, who confirms that M-S-C has allowed prescription to go out of date and that even if it had not, there are no pharmacists available to dispense it at the weekend. Explain to him how important VIM is, as G is also on Life Supporting Medication, so abrupt withdrawal of VIM is likely to cause problems with the LSM regime. Matthew says he will send e-mail to pharmacist straight away, for attention first thing on Monday (8 a.m.). My understanding is that he is asking the pharmacist to request immediate faxed prescription from GP so that the delivery will come out on Monday. Matthew says he will not be in until 11 a.m. on Monday (fair enough). Ask him to ensure that I am called on my mobile as soon as the delivery slot is arranged as I will need to make arrangements for someone to be at home to receive the delivery. Am under the distinct impression that Matthew has undertaken to do this.
Call G’s specialist nurse and the on-call specialism registrar at the Children’s Hospital for advice on altering LSM doses. There is no set empirical method for doing this, it will involve trial and error and a greatly increased level of (invasive) monitoring – tests 2-hourly, day and night.
Go short of sleep to ensure necessary overnight testing is done.
Monday: Send G to school with revised care plan. Speak to transport and school support teams to ensure that they understand the changes to LSM doses and testing, the reasons for the changes, and what to do if test readings are abnormal. Go to the LDS conference. Arrive unavoidably late and keep having to try to call M-S-C, so cannot fully participate.
No call from M-S-C received by lunchtime. Having problems calling the M-S-C helpline from my mobile. At my request, Eldest phones the helpline several times to try to find out what is happening. Eldest cannot get a comprehensible answer out of anybody. When I get home, it is to find that despite the increased testing, G has suffered an adverse health event, entirely attributable to difficulties with rebalancing LSM in the absence of VIM.
I finally receive call in late afternoon from Matthew. Told that as the prescription was not returned by 4pm, which is when the pharmacists leave, it won’t be coming out until Tuesday. Am given walk-through of convoluted process. Frankly, could not care less. Your process is your problem, I am interested in outcome, which is that G has suffered through being deprived of treatment.
I ask why non-receipt of prescription was not chased up, am told that’s the pharmacist’s responsibility. Matthew had sent e-mail on Sunday to be with pharmacist at 8 a.m Monday. Agree that I knew Matthew wasn’t in until 11 am on Monday, but why did he not then check up, as promised? Apparently he had a two-hour meeting first thing. That takes us up to 1pm, why didn’t he get on to it then? He had to meet with his own team.
NOT GOOD ENOUGH. As important as meetings may be, they are of microscopic significance compared with doing the job of getting urgent meds out. If this were a question of customer service, it would be bad enough, but actually, it’s a matter of PATIENT CARE and therefore is worse than abysmal.
Tell him to call me with a delivery slot when one is arranged, put phone down. Subsequently receive self-justifying (and slightly patronising-in-tone) expectations-management voicemail from Matthew, explaining again that process is complicated.
By now it is after 5.30 pm. Phone GP surgery to find out why they failed to return prescription in good time. Surgery admin staff can find no record of prescription request. Suggest I call again in the morning when the repeat-prescription-processing staff will be back in.
Go short of sleep to ensure necessary overnight testing is done.
Tuesday: Call GP surgery first thing (8 a.m.). Still no record of VIM prescription request. Speak to repeat prescription manager, who assures me (and I have no reason to disbelieve her) that surgery has not received a VIM prescription request since April. Tells me that she will take on the responsibility of finding out what needs to be done, and making sure it is done. Send G to school with revised, revised care plan etc. Leave for work.
Receive phone call from Charlotte while driving back from my work appointment, she agrees to call me later. Charlotte calls after 4.30 pm & we discuss matter. Charlotte offers apologies and says she wants fully to investigate the errors. I agree to send this e-mail as my contribution to the investigation.
VIM delivery arrives about 7pm. Credit where it is due, thank you to whoever thought to include standard quantities of accessories without my needing to ask for them. However, to avoid overnight problems, G takes VIM in morning, so needs to stay on the revised LSM regime for one more night.
Go short of sleep to ensure necessary overnight testing is done.
Wednesday: Administer normal VIM dose and return to normal LSM and test regimes.
Questions I would like answered:
Sincerely
Kara
14 Fri Mar 2014
Posted in Uncategorized
Tags
Yesterday there was a discussion piece on the radio about the recent changes to management of medicines, and the resulting costs and inconvenience for patients. Prescription charges are due to be increased in the Budget, to over £8 per item. If you have a variety of medicines on your prescription, then you are currently charged £7.85 per item – irrespective of the quantity of that item. The charge per medicine is the same, whether you are collecting a three-months’ supply, a one-month supply, or a single dose. Unsurprising, then, that patients with chronic conditions prefer to get three months’-worth for their money, if at all possible.
The Health Service, however, prefers to issue small quantities, so that medicines don’t go to waste when patients’ health changes. When my Froglet was small – and, therefore, exempt from prescription charges – there was one item on the repeat that wasn’t supplied through the normal High Street chemists. I could only get it from a specialist pharmacy, and its collection entailed an authorisation faxed through from a nurse-specialist, a twenty-mile round trip with an icebox to keep the medicine suitably cool en route, and a two-hour wait for the prescription to be filled. Grenouille’s doctor used to prescribe four months’ supply at a time, because, he said, the mothers of high-needs small children should not be obliged to make that sort of trek frequently. Then came the unfortunate day when the routine tests at the latest appointment showed that the medicine was having unwelcome side-effects. It had to be discontinued immediately.
Back home, to add to the worries about G’s health, I also had the the gut-wrenching job of discarding an unopened four-months’-worth of medicine, collected only two days before. Despite each little bottle still being double-sealed in its own twin layers of sterile plastic inner and cardboard outer, since it had left the pharmaceutical chain of control, it couldn’t be taken back for another patient. Even though (and I still wince, thinking about it) it had cost the NHS £1,000 per month. Four grand, binned in a handful of teeny-tiny vials. I quite understand why the Health Service prefers to restrict the quantity per prescription to a maximum of one month’s supply.
On the other hand, it is infuriating when I request extra quantities to cover G’s periods of illness or holiday, and get a ‘computer says no’ response. Especially when the pharmacy then supplies the wrong thing – by dispensing unswallowable tablets instead of liquid, perhaps, or substituting, for a named drug, a generic version that has the same potency – and also has an unexpected bonus in the form of a different preservative or some other extra ingredient that sets off Grenouille’s allergies. Either way, I then have to run around in headless-chicken mode to get everything sorted before we actually run out of items. We cannot, must not, run out of some things; their absence would be life-threatening for G. Even a two-mile round trip to the chemist’s gets wearing when you have to make it not once a month, but three times in a week because of underprescribing and pharmacy errors. That’s before you add in the anxiety because one of these medicines is, literally, vital.
So, I’ve exchanged the misdispensed item (which I didn’t find until I’d got it home, because it was a lone rogue pack added into a carton of correct ones). I’ve returned again to collect the stuff that was put on back-order and hadn’t come in when it was supposed to. Still remaining: supply of the item of which G needs extra quantities this month. Talking to the front desk at the surgery just gets a mulish repetition that quantities cannot be varied. The note that I added to the repeat request, explaining why the extra was needed, could not be taken into account, because it wasn’t on the computer. There is – it appears there can be – no explanation of why the prescription was not referred, as requested, to G’s named doctor. I will need to speak to the doctor myself. By appointment. And the first available, bookable appointment is exactly two weeks away.
I know we are lucky to have a (n almost) free-at-the-point-of-delivery Health Service. I know the health professionals have to try to keep costs down. I know it’s not personal, however much the repeated difficulties may get to feel like that. I know, I know, I know. Nevertheless. This month’s repeat prescription is working itself up to be a fine ordeal.
Who By Fire 