Conscience

Mother Theresa (Agnesë Gonxhe Bojaxhiu) was asked her views on what was charity. Her answer was that charity was the act of giving, and giving so much that it hurt. Anything less, she said, wasn't charity, it was justice.

This stirs ones thoughts. If we've spare cash, spare time, spare space, and we gift it to others, Mother Theresa would see that as just (and simply what should happen) rather than being an act of charity. It's only when it costs us something, when the consequence of what we're giving away is felt by us, that this truly can be seen as a charitable act.

I've been seeing a lady, let's call her Florence, who's been referred to me through not coping. Her husband died, suddenly. It wasn't gruesome, he died of a heart attack after they'd returned from the shops. Florence still regrets to this day that she sought some unsalted butter and they drove and argued about parking. She had a large house but had to sell it and move to a more modest bungalow.

Her daughter hasn't seen her for a couple decades, but returned from abroad for the funeral and to spend some time with her mother. The daughter's concerned Florence is, "loosing it" and, "not coping" which generated the referral. Her GP saw Florence and felt she was actually doing pretty well. The daughter insisted she, "wasn't right." Her GP spoke with me and made it quite clear who perceived there to be a problem and who's agenda needed to be addressed.

I saw Florence with a nursing colleague and we soon got the measure of what was going on. Florence was managing well. Her mood was generally bright, she had spells of low mood and despondent feelings, she had brief moments of bitterly intense tears and sorrow. But most of the time she was content and pretty cheerful. She'd described having what amounts to passive suicidal ideation, in the past, when she'd wished to go to sleep and not wake up, but didn't have such thoughts or feelings now (and never had a desire or plan to hurt herself).

She was sleeping pretty well (but not quite used to sleeping alone) with no insomnia. She was eating well and still cooked for herself, and her daughter whilst she was visiting. She visited friends, attended church, managed her shopping.

Mental state examination was unremarkable. Sometimes her concentration wasn't perfect (as she reflected back on what we'd just been talking about) but her MMSE was normal and cognitive testing was fine.

A death, a lot of changes (including selling a house), but she was coping. All well and good.

We then turned to Florence's daughter and asked her how she felt things were. "Mum's lost it, she's getting really confused, she's giving everything away to strangers!"

Florence knew what she owned. She told us how much money she had, where she had it saved, how much went in to which accounts each month, what her new house was worth, everything. She has significant savings. She explained what she thought was important to her, then explained which charities championed these, and what her local church did. She's never given money to random strangers or people asking opportunistically, she said that made her uncomfortable and so she just politely declines and leaves it at that. All emminently sensible. She spoke about her childhood (which was happy) and life as a young adult (which wasn't) then the life shared with her husband (which was mostly happy) and now time spent with friends. She thinks of her life and of how she's lived it and of how she can help others through donations.

Her daughter can't see why she wants to spend money so some strangers somewhere in Africa get a 20 foot section of pipe as part of a clean water programme. Or why she's paid to send people a goat. Or why she's paid for a tree to be planted in Scotland. Or why she gives up her time to clean the church once a week when, "The ladies half her age should be doing that!"

Another lady. Let's call her Rosemary. Rosemary is now in a 24 hour care home. Rosemary knows this, because she's got a good memory. She could tell me the name of the young lass who brought me a cup of coffee, tell me about what that carer had been doing at the weekend and how she'd been so hung over on her Saturday shift, who she'd been out with and what they'd been up to. The carer had the good sense to blush. It was all true. But her propensity for spilling the beans, inappropriately, on someone else's social life wasn't why I'd been asked to see her originally. She'd started giving money away, randomaly, to anyone. She changed her energy provider 3 times in a little over a month. She'd given away all her savings without appreciating who was getting her money or why. With strangers she'd also become rather, erm, overly amorous. Even supervised and supported in care homes she'd been found in bed with gentlemen (who all had dementia). Their wives were less than impressed. Rosemary's brain was scanned. Rosemary has profound frontal lobe damage, driving her impulsive and disinhibited and carefree behaviour.

Florence does not. Florence is normal. She simply has a well developed social conscience. With dismay, I fear it's through her inheritance dwindling that means it's not a formulation her daughter was keen to accept.

Managers

Usually I have a good relationship with the managers. I guess I really should do, being part of the management structure. But in the "us and them" world of clinicians and managers, I've felt we've collaborated and compromised and cooperated effectively over the last few years.

Not so now.

Managers who have no clinical contact and no awareness of clinical practice in the really real world are making unilateral decisions on how care is to be delivered. Over the last year, consultation has widely been felt not to be consultation at all, but simply a tokenistic process of letting clinicians know This Is How It Shalt Be.
Interestingly, the Board proposed significant changes in service design "for consultation" a year ago. Numerous meetings and letters and discussions and emails later (from very vocal Consultant Psychiatrists and senior nurses and formal representation) and, would you know it, the proposals are identical to what they were a year ago, before consultation. So all these clinicians views, all expressed strongly, given by different people over a good length of time, amount to nothing being changed what so ever? Hmmmm. I'm not sure what the definition of "consultation" is, I know it's not asking opinion and doing what they say, but I'd be underwhelmed if consultation is meant to be a process that doesn't effect any change at all.

As well as service design, managers have recently dictated what clinical activity senior nurses can and can't do. Now, in part the Trust has to have a governance framework for their staff to work within, so managers absolutely have a voice in this. But for neither the nurses nor medical managers nor senior clinicians within the management structure to even be asked about this perplexes me.

Clinical posts have been lost, over the last few years. Management posts have increased in number. And then managers uniltareally decide that senior nurses can stop seeing patients and start supporting managers.

And they reckon it's my patients who are mad . . .

Wards

I'm not happy with wards.

Well, to be blunt, I'm not happy with the standards of care on acute medical and surgical wards.

I'm not in the habit of bashing colleagues, so I won't. There may well be understandable reasons for why care has been poor. I honestly don't imagine that staff got up in the morning and thought, "I know, I'll go to work today and do a rubbish job!" I trust that the instituationalisation of the ward staff and the management structure's edicts have significantly contributed to (if not generated) this state of affairs.

But, understandable or not, nurses fault or not, the consequence is still that care has been poor. Unacceptably so.

I have to travel to the acute district general hospital to see their patients, doing the liaison psychiatry work for them. Visiting patients has become a more frustrating process, of late. Parking is a nightmare, so how can I even get to see their patients? But when I do finally get to the ward, it's mostly empty. Usually I just wander on, look for a qualified nurse, can't find one, find if the patient's on the ward by looking on the whiteboard on the wall (no confidentiality here, you see), go to the notes trolley by the door then rummage around and pull out notes (odd that these notes are openly kept in a public area, without supervision, and I've never never been challenged on picking up a set of notes) and get the measure of what's going on. I then find anyone (really, anyone) who can tell me something about the patient's course of late, whilst on their in-patient unit. Once it was a lady pouring tea, who could say my patient had got worse and left her drinks now (had done since last Tuesday), left her meals too come to think of it, and just lay in bed (because the nurse in that bay "was off" and no qualified or unqualified nurse on the ward on that shift knew anything about the patient).

So I drive to their hospital, park up eventually, get to the ward, find notes, find some information, then finally get to see their patient for them.

Recently I saw on lady on the ward who I've been looking after in the community. She has Alzheimer's disease (F00.112) and was getting frailer and more confused, but deficits weren't typical. I thought she'd an acute confusional state so arranged investigations which found her to have pancytopaenia, she was admitted and clever haematologists did genuinely clever things, improving her significantly. They were unsure if she could return home and if her drug regimen was adding to lethargy so asked for advice. When I saw her on the ward, she was lying in urine. She'd been incontinent (because she is). I went to find someone to sort this out, who attended and sighed, scolded her for "not pushing the buzzer" and blamed the patient. The patient has severe dementia. She has no idea what the buzzer is or what it achieves and certainly wouldn't be inclined to push buttons and coloured lights on dashboards on an acute medical ward. The healthcare assistant had no idea that her patient was demented, or what that meant. Folk with dementia really get woeful care on that acute ward, persistently, staff simply have no notion of how dementia affects patients.

Another ward, another patient. Again, someone I know. He's had major surgey and is on a high dependency unit with 1 : 1 nursing. Fabulous. I have a sense of deja vu here as, once again, I see the same thing as has happened before.

My patient's face lights up as he sees me (no idea why, it's the CPNs who've done the most for him, but I guess he's genuinely happy to see a familiar face). I enquire how he's been today, he says he's bored because he can't do anything. He gestures to one arm strapped up (from his orthopaedic surgery) with tubes coming out of it. He nods to the newspaper in front of him which his son had brought in, but he can't ready today. Why not? The nurses haven't got his glasses, he's bedbound and can't get them, the nurse is too busy and chided him for wanting a drink earlier so he daren't ask her for his spectacles. His bag's right behind his bed, I reach down, pull them out, hand them to him. He beams. I'm seeing him at lunchtime (the only time through the day I can, since it's only between morning and afternoon out-patient clinics that I can find parking) and his lunch is on a tray in front of him. He's lying in a bed, with the head end tipped up a little. The tray is across his chest. On it is a shepherd's pie and carton of juice and a cake. The juice and cake are sealed. He has just one usable hand. I look at the food, look at him, look at the food, look at him and he bursts out and laughs, knowing exactly what I'm thinking. "One hand, yes doc, clever isn't it?" He gestures at the foil lid and the cellaphane wrapped muffin knowing he's got no chance.

My third patient is sitting in bloody diarrhoea.

My fourth patient is being taken home by family, against medical advice, despite being an incapacitated vulnerable adult and having nursing and medical and OT and social workers formal written statements and assessments detailing her needs and how these could only be meet within a 24 hour nursing care home. But it's easier to let her go and have no care than argue with the vocal and critical family. So it goes.

My fifth patient isn't there any more. She was admitted with confusion on top of her bipolar mood disorder, was found to have had a heart attack, and had died 2 days later (may she always rest in peace). I wonder what her last few days were like. She was often bewildered and afraid in unfamiliar settings. If my kith or kin had to die in hospital, I truly hope their last days are in a better place than this, with folk who really are in a position to give care.

Ker-ching!

I've a patient who's not asking for anything.

I see her every so often, at her home, usually with the CPN who's doing her depot. I've known her for a number of years and find her utterly delightful. Because she's on a depot and now in her late 60's I'm obliged to review her depot medication and consider the risks, benefits, necessity and rationale for it with her, which is a pleasure to do since she's such good company.

She's never had any side effects on her current depot antipsychotic. She sees it as keeping her exceptionally well for a goodly while, now. She absolutely wishes to continue and is, "Very happy indeed, thank you, doctor."
She's had no recent changes to her drug regimen, no new over the counter medication, no substantial change to her physical health (although her osteoarthritis is worse), so all's stable and she continues on her depot antipsychotic unchanged.

A local lass visits. Helps her with shopping, helps her into and out of the bath. Put in about half an hour a day, at most, usually less. My patient gives her money for her help. It amounts to about £6000 a year. £34 an hour. My patient isn't wealthy and resides in a hellishly deprived area.

She has learning difficulties (LD) and bipolar mood disorder. Dunno if she's dementing or not, tricky to tease out the cognitive deficits that are through LD and through just getting older (Primary Ageing) and changes superimposed on this which could suggest a neurodegenerative process too. If she is dementing, it's early, with no compelling clinical evidence yet. But how ever you frame it, she's not sharp at working out details. And she's nice to people, she likes to be helpful.

She worries about money and won't accept elements of social care offered because she reckons that they cost too much (averaging just a few pounds a day).

She doesn't appreciate what the minimum wage is and what a typical wage for home care would be. The carer won't meet with anyone professional to talk about it.

I can't help but think this young carer is taking my patient for a ride.

Advocacy

More musing over the Mental Capacity Act 2005, I'm afraid.

Let's imagine there's a lady, living with her daughter who's got severe Down's syndrome, who's struggling to cope. When stressed and frustrated she self medicates with a bottle of whisky. Well, most of the time it's half a bottle, to be fair. On one occasion she'd gone through three bottles in three days, but that's unusual. Some days are good and she doesn't drink at all.

Her daughter sits in the house all day and does nothing unless prompted to do so. She's unable to generate much coherent speech and can't convey her views eloquently, but clearly prefers her mum being around and when her mother's been in hospital for a few days for cardiac investigations (which were normal, her chest pains being put down to "stress") the daughter was unsettled and unhappy.

Mum is now dementing. She can't appreciate what needs to be done at home. She becomes upset easily, frustrated easily, so isn't coping so well. She's thrown things at her daughter then been mortified at what she's done. Her daughter consistently says she's fine and she wants to be with mum. Safeguarding adults proceedings were split in views on how this should be managed but at the time concluded the only practicable outcome to address risk was to separate them, and this response wasn't proportionate to the risks evidenced and was contrary to the views that both mum and daughter were expressing. Time's moved on and now her dementia is causing problems in how she manages through the day, too, with it all getting a lot worse.

A nephew visits once every week or two and helps out, doing shopping and sorting mail and attending to the garden when he's time. He's flagged up that things aren't going well.

Mum can't work out what her daughter needs any more. She doesn't know when her daughter's hungry or thirsty or tired or wants conversation. Mum doesn't know details of what day it is or what health problems she has or what medication's for (so has mis-managed prn "as needed" medication spectacularly and is lucky to still be alive). She can't prepare food/cook and has accidentally started a fire in the kitchen. She's wholly unaware of her deficits and believes she's fine, her daughter's fine, she'll accept home care coming in to help with tidying up and the like but that's all.

A formal Best Interest meeting was held, with home care and the nephew and CMHT and GP all attending. It's the only time I've ever seen a GP attend a Best Interest meeting, but it's a very good GP who's interested in mental health and has been intimately involved in this family's care for a good number of years. The nephew has strong views about how the daughter's cared for and argues strongly for her care to be progressed appropriately. We were able to think through problems and risks and wishes and benefits and consequences at length. The outcome was that mum needed to be in a 24 hour care setting, propbably an EMI care home. Daughter probably could be managed at home with a robust package of care, but this would be tried then reviewed.

Daughter refuses this. Mum refuses this.

We can progress this. They're both incapacitated adults, with respect to the decision of their future residence and care. We met to assess their needs and how these could be provided for them. We considered the views of all parties. The professional team had a consistent unanimous view. She needs care, she can't make a valid decision on accepting/refusing this, so under section 5 she's given the necessary care and all's lawful.

But, what about the real implications? She's being made to leave her home. She's being forced to be separated from her daughter. She's going to have to reside in a care home against her wishes and have to pay the best bit of £400 a week for the privilege. She's no way to get out, that she can action.

I asked if an Independent Mental Capacity Act advocate (IMCA) could be involved. The reply was that because the nephew's involved and attending meetings and visiting and can advocate for her, she isn't "unbefriended" so an IMCA can't get involved.

I know what we're doing is right. I know if it went to court for a Declaration (irrespective of what ever the court determined) that we'd be able to evidence that our decision making is rational, appropriate, proportionate, considered and progressing care in the best interests of our both patient and her daughter. Although I spend a lot of time advocating for my patients, and my nusring colleagues have a professional responsibility to advocate for their patients (the NMC requires them to do so), when we're the ones determing she needs to be in care (and her cash will have to fund this) a degree of outside scrutiny would seem appropriate.

It sits somewhat uncomfortably that there's nobody clearly advocating independently for her.

Liberty

This April, the Deprivation of Liberty Safeguards (DoLS) comes in to play. Well, it'll be May before we're using them, but there's invariably a bit of a false start with these things.

What's it mean?

If I use the Mental Health Act 1983 and someone's admitted to hospital under this Act for compulsory assessment and treatment, there're lots of safeguards. I can't detain them, for a start. I've never detained anyone in my life. All I can do is make a medical recommendation, which a social worker (all our AMHPs are social workers) then takes and if they reckon it's the right thing to do they give it to hospital managers to receipt, then the hospital managers detain the patient in their hospital. No one person makes the decision, for treatment under Part IV (i.e. compulsory treatment) there also has to be the agreement of another doctor. For some treatments the patient and another doctor have to agree. Some mental health treatments can't even be done no matter what doctors wish, if the patient has so stated. On section 3, the nearest relative can discharge the patient. If I want to place someone with dementia in a care setting under section 7, the nearest relative mustn't object. If the patient doesn't want to be detained, they can appeal to a Mental Health Review Tribunal who can discharge them. The MHRT is a powerful and scary body, they're a court, can hold doctors in Contempt and (other than additional "recommendations" they suggest which I'd duty bound to listen to but technically don't absolutely have to do) what they so goes.

With advocacy, nearest relatives, specialist (section 12 approved) doctors, a second doctor making recommendation for admission, an Approved Mental Health Professional making the decision on whether compulsory admission's right or not, limits on treatment and rights of appeal, the Mental Health Act 1983 seems to have the right balance of framework to ensure mentall unwell folk can get the treatment they need and deserve within a framework of checks and safeguards and scrutiny to protect their liberty and rights.

So far, so good.

The Mental Capacity Act 2005 is different. In many ways it's much simpler. It also has sound principles, stated explicitly right at the start in section 1. It has advocacy inherently embedded in decision making. It has collaborative involvement in decision making enshrined in section 4 (Best Interests decisions).

The difficulty is that it's so broad.

It's how the 17 year old care assistant, in a residential home, decides if Mrs Stainforthe should have a bath this morning, even though she can't say yes or no to that.

It's for non-mental health matters; it's how the solicitor decided if I was a capacitated adult when instructing them in conveyancing when I sold and moved house.

It's for health decisions. It's for financial matters. It's for social choices.

As a broad bit of legislation affecting any assessment of decision making (capacity) and subsequent health and social welfare care within someone's best interests, by anyone involved in their care, it's a massive bit of legislation.

What can you do with it? Why, anything in their best interests (that a Donee, Deputy, court or Advance Decision don't preclude). Really, pretty much anything. Choice of where they live. choice of medication. Choice of who, when and by who they're cared for. Choice of when, where and what surgery they'll have.

So if someone's an incapacitated adult (within the meaning of the Mental Capacity Act 2005) and has dementia and needs to be in a care home, is indifferent to this (and neither can give nor with hold consent, since they lack capacity, but equally they're not actively opting in to or refusing 24 hour care), they can be placed within a 24 hour care home. A best interests meeting is held, then under section 5 they receive care in a care home.

Great, despite not being able to consent, they still get the care they need. This is decided by a team, with involvement of family and all parties.

But, if they don't want to be in a care home, how do they get out? There is no tribunal or appeal process. There is no automatic review process. The family might have objected but the best interest considered then discounted their view and placed their relative in permanent care. Someone's in a locked EMI residential unit, forever, with civilains placing them there and no judicial process to get 'em out. Okay, family could go to court for a Declaration, but the confused patient who doesn't want to be in there's not going to chirp up and progress such a mechanism.

Enter the Deprivation of Liberty Safeguards. Before someone's deprived of their liberty, our Primary Care Trust will have to give Authorisation. Hurrah, libery is safeguarded. Excpet, out PCT didn't know about this, even last December when I met with them. It's a statutory obligation, they have to do it, but even now in January they've no staff and no framework for this work. Each application to the PCT will involve 6 assessments. They have no idea who or how they'll do this.

It's their duty. We don't have the resources to do this work. I don't want to do this work, through conflict of interest. "I'll bundle this old lady into a care home. what, we need to make sure it's for the right reasons and not just 'cause it's the easy option? Okay, let's get a review and scrutiny and authorisation - who'll do that - oh, I will!"

But I see the PCT being clueless in the assessment process. So, like capacity assessments, I see a whole slew of referrals to my door, "for an mental health assessment," so we can do most of the work for them. Ho hum.

Standards

We all have certain personal standards.

The lives of folk with dementia change, significantly, as the dementia progresses. What's important shifts. As it takes its course, there's an increasing emphasis on the here and now (as memory of the past and awareness/planning of the future becomes increasingly impaired). As well as living more in the moment, there's also usually a shift in perspective of what's of value. Company with partners usually rate highly. Material possessions usually don't.

To most folk, their presentation matters a lot. Presentation in a broad sense. To some folk it's their smart, coordinated clothes and accessories. One lady was devoted to her hats and shoes and earrings and necklaces/pendants which all matched, it was part of how she was and thus (to her) part of who she was, so mattered. Lots of folk don't have interest in their clothes (and aren't at all concerned about being the height of this season's fashion) but want to be polite and dignified when out and about. Many folk want to look smart, to be shaved and kempt.

What differs is mostly the matter of degree. Most folk don't want to smell and have poor hygiene. But whether they want a bath every day or once a week, that varies from person to person. If you've a choice this afternoon, would you rather home care spent half an hour tidying up the things on the floor that you pulled out, when looking for your "lost" glasses, or half an hour dusting and hoovering your stairs? Importance of tidiness and cleanliness again varies from person to person.

Let's take a lady. She lives in a lovely bungalow in a lovely neighbourhood with a devoted husband of 52 years. She loved going to the local church every week, singing there, going to the local womens' group (when she sang, painted watercolours and was active in the gardening discussions/trips/activities) and going on holiday to a European country several times a year with her husband to learn the language, enjoy the food and paint the stunning scenery. She loved to look stylish, enjoying bright, bold clothes.

She has severe dementia.

Now, she can't really speak, but generates mumbled dysarthric words that seldom make sense to anyone but her. She still sings, though, and lights up when music's on. She's stopped smoking a couple months ago, despite being a 40 a day woman, and when her husband offered her a cigarette after a meal out she took it and held it, looking thoroughly bemused and unaware what to do with it. She's poor concentration, being unable to sit still for more than 10 minutes before she want to be up and active, doing something else. Whether it's watching TV, in a queue in the shops with her husband, in a local cafe, in the bath, whereever. 10 minutes, then time for something else.

Meal times are a problem, through this. 10 minutes at the table and she's up, leaving to potter in their kitchen. Her husband is distraught. "She's always sat down for dinner, this just isn't like her, what can we do about it?"
"Well," we say, "why not give her sandwiches or finger foods she can hold and walk around with, snacking, as she's wandering around her kitchen or garden?"
"What?!" He looks at us as if we suggested murder. "No! She'd never, never want that!"
"But she's hungry, she's losing weight, she needs sustenance, her feeling of appetite/satiety have changed, it's sensible to try to have a little food offered often."
Head. Brick wall.

They have a low sink. She has urinated (succesfully) in it, Lord knows how. She can't manage the toilet, since the seat's always down and she doesn't recognise it as a toilet. But urinating in the sink, that's something her husband "knows is wrong" so covers it with a towel. So she just had to void urine on the carpet. "You've got to stop her doing that!"

At night time she gets tired at different hours so will retire to bed at different times. Sometimes she's washed out and just wants to snuggle down and sleep, so does so. Doesn't occur to her to change from day clothes to night atire. Husband is mortified, so rouses her to change to night clothes. She resists, seeking slumber. He knows, "She can't go to sleep like that!"

There seems to be a time when person centred care has to be considered over what our own personal standards are (and even over what our partner's personal standards used to be). But that's not easy. Stormy times ahead, methinks.

Misery

I'm pretty content; work's good. Some of my colleagues are not content; work's stressful.

When training as a psychiatrist I was taught by an eminent chap who was colourful and very "medical model" in his approach.

His view of psychiatry was that it's all about misery.

He reckoned folk wouldn't be seeing us if all's well. He reasoned that we only get involved when there's illness and handicap from that. Years on, the notion that psychiatry involves helping those who have a change in health and change in function as a result of this really isn't so different from what he described.

It's odd, to my mind, that folk in the same job, in the same area, can do the same work but some find it vibrant and worthwhile, yet others see themselves mired in misery.

". . . for there is nothing either good or bad, but thinking makes it so."
- Hamlet, Act II, Scene II