UKIP and the dangers of thinking out loud

Policy or Policy Debate?

After the furore of one of their now ex members (Geoffrey Clarke) voicing opinions on which they have little knowledge and clearly less empathy, I thought I'd have a look at the policy that UKIP currently have on abortion, I suspect lots of people had the same thought, therefore I wasn't really surprised when I came across this,

404 Not Found

The page you requested could not be found.

It may have been removed, had its name changed, or been moved to a new location.
Go to homepage

Perhaps this is their policy now?


Their policy on health and the NHS is fairly vague and doesn't really seem to have any statements about social care so I was really at a loss to figure out if they agreed with him but realised they'd be vilified if they did so publicly, or whether they disagreed with him and just hoped he'd go away, or whether they really had no idea who this Geoffrey Clark chap was and why he was making their lives really difficult by talking rubbish???

Did he just say what I think he said?

So, what did this chap actually say?  Not what did the press say he said or what do people on twitter say he said what the press said he may have said (you get my drift).

So it appears that Geoffrey has a personal website on which he published his own manifesto in order to gain a Gravesend Rural Seat in Kent County Council (not Prime Minister or leader of UKIP).  He's made it clear that the views are his own and not those of UKIP and as of today (19th December 2012) he's decided to run as an independent candidate.  Politics is a fickle place and due to the secrecy of voting, and the media uproar, he may actually get elected purely on name recognition.

A short while ago I wrote an article with reference to Winterbourne View regarding the methodology for making abuse in care a likely outcome when poor standards of care existed.  One of my setting conditions for this to occur was for people to see those in care as somehow less than themselves, less deserving, or a burden.  I also presented this at a number of training courses.  Some people were surprised that people would see people with Down Syndrome as being "less" than us.  Step forward Mr Clark to prove my point.  He certainly seems to see those who have life long conditions as being a burden and therefore by definition not as worthwile as the rest of us.

He said

“compulsory abortion when the foetus is detected as having Downs, Spina Bifida or similar syndrome which, if it is born, could render the child a burden on the state as well as on the family.” Geoffrey Clark Personal Manifesto Statement.

Let's be clear, Mr Clark was not saying this was going to happen, he was saying it was something that should be reviewed.  Since his original manifesto (which surely must rate as a classic case that you should read something before you publish it online) he has since gone on to say;

In an interview with This is Kent yesterday, 
Mr Clark said: “I would like to apologise to anyone who has taken offence - none of it was intended.
“UKIP’s policy is to reduce public expenditure. I am a layman; I do not know what should be cut. I wrote my website very, very quickly, it was so naive and foolish.”
Mr Clark, who appears to have taken down his website, added: “Some have been offended and I sincerely regret my choice of language. It was inappropriate language to express something that is genuinely sincere – we need to review all expenditure.”

What's the solution to people like Mr Clark?

Unlike many online observers, I'm not going to call for his head, but neither will I support him (as I don't like most of his policies), but I would suggest that rather than slam him as many charities have done, they should educate him, introduce him to people with Down Syndrome.  Education and Learning are what will change his mind, abusing him publicly may only entrench his views, who knows, convert him to an educated viewpoint and you may have a huge positive impact on society.  Because we all know, when he wrote that, some people agreed with him, change him and you'll change more.

Geoffrey Clark does not deserve your anger or venom, he's the victim of lack of knowledge and understanding coupled with a large dose of being "naive and foolish".  He may well truly believe that people who need life long care are a burden, but, if we educate rather than accuse, inform rather than abuse, create understanding rather than be disgusted by lack of understanding then maybe a very big step may have been taken in improving the image of people with lifelong disabilities.





 

How much is a life worth?

This morning I clicked on my phone to check the news and spotted this rather strange item about a DNR notice and a man with Down Syndrome.  For those of you not medically inclined a "DNR" is  Do Not Resuscitate, which is what will be added to your medical notes when you're in hospital based on a variety of factors.
A DNR is applied to a patient if in the course of their hospital stay/treatment their heart stops beating and medical staff are not then supposed to attempt to restart the heart.  Now obviously this is a difficult area as it means making decisions about whether there is any point in saving a life.

Circumstances where a DNR might be applied

1. If the patient expressly wishes it in a living will or advanced directive. - not the same as euthanasia
2. If there is an indication that resuscitation will cause more suffering
3. If there is a strong chance CPR will not work
4. It is not in the patients best interest.

 
Who should medical staff talk to?
Ideally the patient, however, if the patient lacks capacity the medical staff should seek guidance from their safeguarding officer and should also take into account the view of carers and family.  Although they don't have to follow the wishes of relatives or carers, there should be clear signs that they've both sought and that should also be noted.  Every hospital should have a clear policy available for all to read.

Having said all this though, the final word however does rest with the medical staff (according to the GMC) GMC Guidance.

Now all of this is very interesting, but two things stand out for me, the first is the concept of best interest and the second is concept of undue suffering.

Both of those sound fairly straightforward but they aren't concrete decisions, they're value based decisions which are based on some fairly abstract concepts one of which is the value of human life.

We would all like to think we view human life as having value, but realistically some lives have more value than others and this is where this decision to DNR a man with Down Syndrome who also has Dementia starts to take on a different slant.

Ask yourself the following question about who's life holds greater value.

1. A toddler
2. A newborn baby
3. A 98 year old man
4. A 21 year old soldier
5. A 18 year old university student on his way to first day at Cambridge to study Medicine on a scholarship
6. A terrorist
7. A 9 boy with Down Syndrome
8. A 25 year old Football star
9. A 45 year old black man in Sierra Leone
10. Your next door neighbour's teenage son
11. A dead puppy

Is Everyone Equal?
You'd be tempted to say that people all hold equal value as human beings, however, the reality is that if you hear about any one of these people listed above dying, you'd have a variety of emotional responses based on whether you observed it, whether you knew that person, whether you've experienced something similar in your own life, how the death came about and perhaps most important of all, your own personal circumstances and what you might deal with on a regular basis. 
Empathy is two way
If during your daily working life you cope with and deal with death and suffering pretty regularly this means that you have to adjust your viewpoint in order to cope emotionally.  If, as a doctor or medical staff you became emotionally distraught every time a patient dies, then you'd be a pretty useless member of staff and probably not last very long working in clinical medicine.
If we expect Doctors and nurses to have empathy, then we must also expect this empathy to work in the opposite direction.  Keep in mind that often a Dr or Nurse will be in their late 20's early 30's, be academically bright and excelled throughout their careers.  They have normal(ish) lives with families, friends, mortgages etc. The biggest difference though is that a significant proportion of the people they come into contact with (depending on clinical circumstances) may end up dead.  I don't mean they all die, but, realistically very few other professions have the same ratio of meeting a person who then ends ups dead shortly thereafter.  This must have an impact on how you view the world and the population within it.
Different Values
The reality for all of though is we place different values on every one's life.  Take that list again and tell me which one would upset you most if you heard about it on the news?  Or, you witnessed it?  The fact of the matter is, that in society currently, the man with dementia who dies is not news, the man with Down Syndrome who dies is not news.
They are not deemed to be worthy of our sympathy because for most people the sympathy is not there.  This does not mean that to their families, their friends and to those that know them their life has any less value.
There must be a better way for a family to find out about a DNR than finding it in the notes and discovering the reasons are learning disability and Down Syndrome. 

Rather strangely in the UK, often the the 11th item on that list would encourage the most sympathy and emotional response.

All Life Has Value
All life has value and when making decisions that impact on that value, we should do it with Empathy.  Stand in the shoes of that person, that person's family and then we might not have such a shocking story again.
It's about changing attitudes of course, but for me it's about changing the view of the value of the life of someone with Down Syndrome (or other learning disabilities) and the value of life of someone with Dementia.

The Caring Dilemma

People are People Too

There's an interesting dilemma in the care services which isn't new and I suspect won't go away.
That dilemma is based on how we treat people.
Notice I used the word people, not service users, residents, students, customers, clients, people we support etc.  People, just people.
When we work with people in our care, there is another group of people who often are disregarded as part of the care system and that's those that work in care.
I don't mean they're disregarded in terms of we don't know they're there.  I mean disregarded in terms of how we treat them.

Do You Feel Like You Matter?

I suspect that if you work in care, you don't feel particularly valued.  In the new Government public sector system we are euphemistically going through a "restructuring" process.  What this often means is, that people (staff people) are informed that for every 4 jobs available there are currently 5 staff working.  Our "restructure" needs to reduce that number to match the number of jobs.  Typically those people (again staff people) are informed that they will be going through this restructuring over the next few months or so.  As part of this "restructure" you will be interviewed by people (manager people) who may well be going through a similar process and therefore be looking over their shoulders to figure out whether they've got jobs or not.

So? What's New and Interesting About That?

Well, the interesting thing is, that almost all the places I've been to, don't have people (staff and manager people) who feel they've got 20% too many people working there.  In fact the 120% of people working there often feel that they could do with six people rather than the four they currently have.
They often feel that the lack of staff they have means that the people they support often don't get the quality of care they deserve due to this very shortage (or in restructuring terms, surplus) of staff.  This shortage of staff may not be apparent to the funding bodies, but when an organisation tries to provide person centred approaches, that means that we should be doing activities based on a "person" by "person" basis.  So, if you support 6 people in your small home, then how do you enable everyone to do activities based on that individuals personal needs.  I'm not saying it's impossible and in fact, with a well motivated, trained and energised staff group you should be able to manage that fairly easily.
 

Wait, Did You Say Motivated? Energised?

Yep, that's right!
We all pride ourselves in care at having empathy for the people we support, however, it seems to me this empathy often doesn't move towards the other forgotten people, the ones who do the supporting.  We know that, as a rule, if we want people to be good at their jobs, be positive in the care environment, turn up to work, be motivated to learn, be encouraged to develop then we need to have the correct leadership, correct setting conditions and the correct approach to supporting not just the people (we care for) but the people (who care for them).  A good way of making this all fall apart is to create an atmosphere of uncertainty and anxiety.  I suspect this is often deliberate in the hope that some people will jump ship before they're pushed which will save time and money.  

I was working with a group of staff this week and one of the things they were describing was the sheer terror at having to interview for their own jobs as part of the "organisational restructure".  They described interviews that had little to do with their jobs and more to do with sitting in a room answering standardised questions asked in turn by people (random managers they'd never met).  One of the people (interviewees) suggested that perhaps there were two types of people -

Those that were good at interviews and those that were good at their jobs!

So? What Next?

To be honest, I suspect that most people (managers) when they hear about budget cuts start to think of who they can get rid of and how many, and what they can cut back on.  For me, creativity is the key as well as the long run process of developing services.  Sometimes jobs have to go, sometimes services have to go.

The first port of call then, is when a "restructuring" takes place, treat the people (staff) on the receiving end as you wish them to treat people on the receiving end of their work.  Strangely we seem to think if we treat people (staff) badly they will then forget all about that, stay motivated and work brilliantly.  Why is it we know that in care, a positive approach shapes behaviour, but in management strategies we think the opposite is true?

If services have to go and people have to go, keep everyone informed of what's going on, remove the uncertainty, allow them a say in what's happening.  Don't just interview them for their jobs, go observe them doing their jobs.  This is someones livelihood and dare I say it, their vocation.  People don't enter into the world of care to make a million pounds, in fact in many places they could make more in McDonalds.  Treat them with respect, treat them with dignity and treat them as actual people.  You'll be surprised at the results!



 

Department of Health Review into Winterbourne View or Dogs and Goldfish

The Department of Health Review:   

Winterbourne View Hospital

Or,

Dogs and Goldfish.

I have just read the interim report from the Department of Health and although good, there is a huge hole in the issue surrounding restraint (or restrictive physical interventions).  This huge hole is not about whether restraint is used or what type of restraint is used, but the fact that people are just using another name to describe it, therefore it’s slipping under the radar of inspectors.

Let’s use an analogy

Imagine if you will, that I run an animal rescue centre and we have government regulated space for only 10 Dogs.  However, at this moment in time we have 100 Dogs.  I have been told by the government inspectors that I must reduce the number of dogs in my centre.  In order to satisfy the inspectors, I can either follow their rules or change my terminology so it appears the rules are being followed.  Therefore, I can either re-house 90 Dogs somewhere else, or, more creatively, I can just re-label some of the Dogs.  In this scenario, let’s rename them Goldfish.   

My criterion for changing the name from Dog to Goldfish is based purely on size.  Therefore, if the dog is smaller than a Labrador, it is now officially (in my centre) called a Goldfish.  I’ve got 90 dogs smaller than a Labrador so now I only have ten dogs and 90 “Goldfish”.

When queried by staff about why the small dogs are goldfish, I respond by saying that they’re totally different because they’re totally different. One is large and one is small so it stands to reason that they’re not the same thing at all.  Besides, in our centre that’s how we classify dogs and goldfish.  I realise that this doesn’t sound logical, but wait until I get to the Seclusion/De-escalation story!

There are a couple of interesting points when looking at the dog/goldfish scenario.  The first being that if I’m asked by my employers to count the number and types of dogs within my organisation, I can say we have only ten dogs.  Although in reality we have a hundred dogs but only ten of them are larger than a Labrador.  Therefore having relabelled the smaller dogs as goldfish, we can say we have ten dogs and 90 (strange looking) goldfish.

Or perhaps another way of putting it would be to say we don’t do restraint within our service because, before it gets to that, we use guidance techniques to remove people to another area.  Now, if I don’t know any different, then how can I contradict someone who tells me this is the case? 

Logically illogical!

A few years ago, we were asked to provide some training in a private learning disabilities hospital for those rare times that physical interventions were required.  When we arrived we were shown around the facilities which included a tour of the grounds and the rather grand presentation of the Seclusion rooms.  I kept my counsel and went through the process of what they did and how they did it.  It appeared that seclusion was used in only 1% of situations and they’d gone through the correct channels, registrations and training etc. to be able to use seclusion rooms.  I said to them, although unhappy with the seclusion room as a method of management, we would provide training as long as the people being put into seclusion were properly monitored, it was used in conjunction with the Mental Health Act guidance, it included a positive behavioural support plan and above all it was operated in accordance with the current legislation.

 It was only when we started the training that it was presented to us that de-escalation or “de-esc” was used 99% of the time and staff very rarely if ever used the seclusion rooms.  In fact most of the staff trained hoped the Hospital would stop using seclusion as soon as possible.  They seemed like a positive bunch that were forward thinking and willing to change.  It was only when we noticed certain disjointed discussions around what they called “de-esc” that the penny dropped.  They weren’t discussing de-escalation as an activity or a process of defusion.  It was actually the room next to the seclusion room (which was identical apart from not having a lock). 

Therefore, de-escalation wasn’t what they did, it was where they went.  More importantly, in order to get people to the room, they were “escorted”.  It transpires that this was done by having two members of staff put wrist locks on the service user and one member of staff pushing the person forward from behind.  It was at that moment, that my obsession with defining what was meant by restraint/seclusion/appropriate strategies etc. was born!

So if it’s not a goldfish, then what on earth is it?

As a trainer, it’s often the case that people don’t know exactly what restraint is; therefore they’d rather call it something else because restraint sounds nasty and horrible.  Terms we’ve heard to describe activities we would define as restraint have been – guiding, gentle holding, therapeutic holding, therapeutic guidance, restrictive physical intervention, physical intervention, positive support, positive guidance etc. 

Therefore, if you don’t know whether you’re looking at a Dog or a Goldfish and someone who sounds like they know what they’re talking about says to you in a convincing voice –

“Well, of course it’s a goldfish, it’s got a lovely wet nose, bushy coat and look at that wagging tail it’ll even fetch a ball if you throw it”.

The end result is that all new staff coming in will eventually just take for granted that what they’re looking at is a goldfish.  With some organisations turning over 50% plus of their staff every year, that’s a lot of new staff who think they’re looking at a goldfish!

So why on earth call it a goldfish?

Because of the dislike of the word restraint, organisations have tiptoed around the subject and are unwilling to address it.  By renaming the process it often makes people feel better about the services they provide.  If they’re doing less restraint, they must be doing a better job.  In fact, this Department of Health report identifies one of the main indicators of doing a better job as reducing levels of restraint. 

However, they’re missing the point.  The terminology of restraint has less to do with what you’re doing, than why you’re doing it.  For me, one of the reasons that the problem has arisen is because people equate restraint with being bad. 

“It’s not a restraint it’s a goldfish!”

Sorry

“It’s not a restraint; it’s a least aversive positive handling physical guiding technique as part of a wider behavioural support strategy”

The word or activity restraint itself isn’t bad; it’s the purpose of the restraint that’s the issue.  If I restrain a child from running under a car on a busy road then very few people would question how I did it or why, however if I perform the exact same technique for stopping someone looking at me in  a “funny way”, then quite rightly I’d be chastised or possibly prosecuted. 

It also needs to take into account the potential for harm.  Often we see restraint techniques used which if someone slips/applies too much pressure or is simply too “enthusiastic” then the potential harm is far greater than the outcome of the behaviour that led to the restraint in the first place.  So, for example if my child is about to run into the road and get hit by a car and I decide to stop this by running him over with a truck, perhaps the purpose of my restraint is lost.  

I have worked with some staff in the past who were horrified to discover that when one of the people they support went to respite care, he had both of his wrists dislocated during a restraint.  What was the purpose of the restraint?  Apparently it was because he was biting his hand.  So in order to keep him safe, they dislocated both of his wrists!  Now, we know they didn’t do this on purpose, but, it does seem strange that the outcome was made worse by the management of harm strategy.

So we now have three problems.  

1.  Changing the name from Dog to Goldfish and therefore assuming that because we’ve changed the name to something different, means we don’t have to account for it anymore. 
2. We need to have purpose to what we are doing.  They are intrinsically linked.  If I don’t have an appropriate purpose for doing a restraint, then the easiest way of disguising what I do is to change how I describe it. 
3. The restraint shouldn’t create a worse outcome than doing nothing at all.

This report has made some great suggestions, my additional one would be, if it’s restraint, then staff/organisations etc, must know that’s what it is and account for it accordingly.

Moving Forward

We don’t just need to change terminology, we need to ensure employees not only know what they’re doing, but why they’re doing it and be trained appropriately in all areas.  I normally jump on my soapbox at this point and will do so again. 

If someone understands why someone is doing something, then they are more likely to approach them in a positive way.  All physical interventions/restraint training MUST have this as part of their training.  Trainers also MUST teach this before they show you a neat guiding technique for moving someone who’s blocking a doorway or being “awkward”.   

Staff must be aware that if they take hold of someone for whatever reason, and that person doesn’t want to be held, it’s restraint! 

Training in understanding is more important than techniques; we need understanding because empathy is part of what makes it a “Caring” organisation.

The potential damage of misunderstanding DoLS and MCA

As an trainer who spends time with carers, families and staff members whose responsibility it is to cope with vulnerable people I am often astonished at the lack of knowledge people have and worry about why this is the case.

If I were to take just a few areas of lack of knowledge in the caring sector and deal with what issues that might cause.  In this article I will deal specifically with Learning Disabilities, but often these issues apply to other areas as well.

The Law
Let's start with DoLS.  When discussing legislation with care givers, often their eyes roll back, they sigh and say something along the lines of "the law is an ass" or "problem is they don't live in the real world these politicians that make laws".  Well, I'm hardly going to disagree with either of these statements, but, I'd first try and correct the assumptions that DoLS and the Mental Capacity Act (and to some extent the Human Rights Act) were put into place just to make the life of a carer harder.

The primary functions of all of these peices of legislation is to protect.  They often protect the most vulnerable and they on occasion like any piece of legislation get misreported in the press or have unintended consequences.  However, that still doesn't prevent them from being a force for good. 

So, back to our misunderstanding of DoLS.
I was asked this question recently by a member of staff who was both clearly a caring person and professional in her attitude.

"So, if I was to prevent a person from running over the road when traffic was coming 

would I not be restricting her liberty, and if I am, Isn't that illegal?"

I've also had

"It's against the law to prevent someone from self harming because it's their choice"

"It's illegal to restrain someone because that's unlawful imprisonment"

"You can't even lock the front door to stop burglars coming in because that's restriction of liberty"

Just to be clear these were all different people on different courses

Interestingly

I've had staff from one service tell me that although they couldn't prevent someone from self harming because it was his choice, they could prevent him from masturbating because his family thought he was too immature to be allowed to perform sexual acts (he was in his 30's and had a learning disability).

Mental Capacity Act

If we then add the Mental Capacity Act to the mix where there is the assumption by many staff that because you have a learning disability, you're unable to make your own decisions.  Upon telling one group that in fact, a person is assumed to have capacity until demonstrated otherwise.  This information was responded to with the following phrase.

"but surely having a learning disability means that they can't make rational decisions anyway?"

They were also quite surprised when I told them that this ability to make decisions included  "Unwise or Strange decisions".  They found themselves trying to justify why this didn't apply to their service.  I got all sorts of, well with our people they can't make those decisions because they'd do something dangerous.  I realise that when people hear things they don't like the sound of they often then rationalise their dislike by using extreme examples of why something is wrong.

It was also interesting that when I suggested that actually there was a section of the MCA which stated that people who had capacity (remembering the assumption made that all people 18 or over have capacity) may make decisions which other people might consider to be "Unwise or Strange" and that is protected within the MCA.  This was immediately queried until I asked a few questions of them.

Just a few quick questions

•  We all know the sensible thing to do is eat five fruit and veg every day, exercise three times a week and keep alcohol consumption down so, why don't we?

• We all know that smoking kills, so why do you do it?

• We all know that piercing ears (and other body parts) hurts, so why do it?

All of a sudden the penny dropped with the group who discovered that actually this piece of legislation was put into place often to ensure that people we support have the same rights and freedoms as we do.

I would never suggest that the people I was training were abusive deliberately, nor that they were malicious in any way shape or form, but of the their basic misunderstandings of legislation lead them to make decisions that could be abusive or fail in their duty of care. 

How do we get around this issue?

Well, as a trainer, I'd obviously suggest training.  However, that's only one element of the process.  For staff and carers to truly understand something that has an impact, their employers often have to understand it to.  Sadly, this isn't always the case.  I've been told by a Director of a large organisation that staff should never restrain someone because that's an infringement of their liberty.  When I queried whether that would apply to a person who is repeatedly self harming by banging their head against a door frame (something a member of staff had told me during a previous meeting), he responded by saying they don't restrict people because the law doesn't allow it and further if staff do restrict it and you teach them how to do it, they'll do it all the time!

So for me, it's not just about training care staff, it's about getting owners, directors, managers to understand that they need to have a very clear understanding of the legislation so they can give clear direction and policies to their staff.  Without this, people work on misunderstanding, act in the way they think is correct and sometimes end up making things worse.

A further point is trying to get staff to the point where they can relate the legislation to their own lives.  This gives people an awareness they often don't get when someone just tells them what to do!

Benefits of rational thinking in an irrational time

Rational Thinking and Common Sense
 
I was running a course last week and mentioned that people often behave irrationally when confronted with a situation they don't understand, or that applies a certain degree of time sensitive pressure on them.  I further suggested that in fact, it's probably more common for people to make irrational choices that rational ones.

Everything was fine initially, until the group I was training realised that when I was speaking of "people" I was including them!  Interesting isn't it that we are happy to label everyone else as irrational but not ourselves! One person in particular stated  "I never make irrational decisions because I have common sense".

Now, this was interesting, because, by her argument, rational decisions are just common sense.  This creates a small dilemma for me, because I suspect that actually most of our decisions are made in the absence of common sense. 

Some examples of "common sense failure"

Drinking too much, even though common sense tells us that tomorrow we will have a hangover.  Not exercising enough even though we know we've put on weight and our clothes don't fit.  Shoes that we love the look of but don't fit properly.  Smokers who know the risk of cancer.  Drivers who know that filling the car with fuel is exorbitant, but then don't do anything to reduce their fuel consumption by emptying the boot, putting air in the tires and driving at a sensible speed.  Buying lottery tickets believing you really will win the  six week rollover jackpot!


Common Sense in the Care Sector

We Know that the majority of us will grow old enough to need the help of one or more carers but we seem to be wandering around imagining it will never happen to us.

If rational behaviour and common sense played a massive part in our behaviour, then why aren't we engaging in a massive improvement in care to ensure we are the most pampered and cared for group to ever have gotten (or get) old.  I personally suspect I will need some form of support around 40 years from now, so my ambition is that at least ten years before that, elderly care is like some sort of luxury holiday service with cakes and loveliness and people to wait on me hand and foot making sure that everyone is able to realise that I'm perfectly entitiled to my opinion and to repeat the same story three times during the same conversation.

Sadly all the evidence is, that as more of us get to the stage of requiring care, the people in charge of the funding and legislation seem to be sending it in the opposite direction!

So given the unlikely event that my care home (unless I win the aforementioned lottery) is going to be paradise on earth, what would I like from it when I get there?  Well let's have a look at some of the basic stuff like how the staff will handle my behaviour.

 What do we know?

1. We know that everyone gets annoyed or angry sometimes
2. We know that sometimes the people who live in care or supported living get angry and might behave in a way that could cause anxiety/distress/fear in the person supporting them
3. We know that people who work in care homes will have to manage and/or deal with that anger
4. We know that the people who work in care homes are under pressure
5. We know that when people are under pressure they don't always do the correct thing
6. We know that sometimes peoples "common sense" tells them to do totally the wrong thing in these circumstances

 Rational Thinking would indicate then 

• that staff should receive guidance on what to do
• they should have a clear plan written down to follow in the case of a crisis with the person they support,
• they should have a clear debriefing process (not just a process of being told off)
• be trained to understand why the people they support might be angry
• be trained to manage that persons anger when it happens

So

Why is it then, that this group of twelve staff I trained last week, who now all work in learning disabilities but ten of who recently worked in different elderly care homes throughout Derbyshire and Nottinghamshire had never received any training, guidance or policies on managing behaviour they might find challenging?

The common response from employers is, "we don't have enough money".  Well common sense would tell us that a motivated, well trained and supported staff group often work better and don't leave as frequently then  maybe you'd save a fortune on recruitment costs?  Perhaps those ten staff I trained last week would still be working in elderly care therefore saving their employers from have to recruit new ones? 

Also a well trained staff group are far less likely to behave in a way which would lead to abuse of people in their care.  Surely this is the rational choice?

For more reading on irrational behaviour I'd recommend Dan Ariely found in all good bookstores

How long for lunch?

Setting the scene
A few years ago, I was asked to do an assessment of some one's care needs.  The person in question had learning disabilities and lived in an hospital in the North East where he no longer resides.
The assessment was to figure out if the person in question was safe to be allowed to "re-enter" the community and live in supported accommodation. 

We were commissioned by the organisation who were to provide the supported living in the community.  They  were very concerned, as the story they were hearing from the Hospital was that he was an extremely difficult person and only staff at the hospital could cope with his extreme behaviours.  They weren't clear what theses behaviours were, but it was clear that they felt he was very dangerous.

The assessment
When we arrived at the hospital to do his assessment things became clearer and more murky at the same time.  The behaviours that were dangerous were constantly referred to, but no one could actually explain what these behaviours were.  All we were told was that it took on average 5 people to control him when he displayed with these behaviours and all of them were fully trained in control and restraint.

In our effort to find out why he was being restrained we asked a series of questions (none of which seemed to be answered in his notes or the care plans of the hospital).

• When is he being restrained most commonly?
• What immediately precedes the restraint?
• What happens immediately after the restraint?
• What systems are in place for ensuring that this restraint is necessary?

The responses we received were quite random.

• Some staff said he was totally unpredictable and it could happen at any time for any reason.
• Some staff said he was restrained for "non-compliance".
• Some staff said they never restrained him, so didn't really know when or why.*

The interesting statement that came out of this was the "non-compliance" rationale.  We then asked, what they meant by "non-compliance" and typically the answer was.  When he was told to get out of bed and refused.  It then transpired that every morning, he had to leave his bedroom (which was then locked for safety reasons) and go down stairs to the main area.  If he refused to leave, he was "warned" and if he refused again he was restrained on his bed.

Apart from the quite surreal catch 22 situation of being restrained in a room you've been told to leave, no one could tell us why he had to leave his room for "safety reasons".

This caused so much concern that we started looking at other rules that were enforced for "safety" reasons.
The main ones that seemed to happen revolved around food and drinks.

First example
Lunch was started at 11:40am and finished between 11:55 and 12:00 noon.  Staff stood over the patients and told them to hurry up.  They had essentially 15 minutes between walking in the room eating two courses, orange squash and then tea before they were ushered out again and the staff would then lock up for "safety reasons".  Now, I'm not saying that there are no safety reasons for locking up the dining room but what was interesting was that the patients had 15 minutes for lunch (and a majority of the incidents revolved around lunch time) and the staff had 45 minutes for lunch (strangely starting at noon).  When we suggested that it might be better if everyone had an hour and they all ate together, I was looked at with bewilderment and told that as I wasn't a qualified nurse, I probably didn't understand.  They were of course correct on both counts!

Second example
The other big example we encountered of food based control was when you could have a cup of tea.
While observing the person we were looking to support all the staff and patients were in the main sitting room.  All the staff were watching TV at one end drinking coffee and tea and all the patients were at the other end of the room either sitting or walking around.  When one of the patients came over and asked for a cup of tea, she was told "it's not two o'clock yet, go away".  When she started crying he said "she's always like that"


There were plenty of other examples of enforced rules which seemed to have no reason or purpose other than to make the life of staff easier and interestingly all the staff seemed to think they were doing an amazing job. 

We (as an organisation)were in a very difficult position unfortunately as these staff had a massive say on whether three of their patients were going to be released from their hospital and allowed to move into the community, also we needed their support to actually gain access to these three patients.  Fortunately all three eventually moved to the community and I managed to get hold of the new Nurse Manager of the Hospital who was an old acquaintance and report what was happening.  I'm pleased to say it was dealt with well.

Leadership
We as an organisation are an advocate of coaching and leadership training.  What was interesting in this particular hospital is that we did at least 5 days of observations in total.  Night shifts, day and weekends.  The nurse managers office was next to the main sitting room and not once in that entire time did either myself or my colleagues observe that manager enter the room or speak to a patient.  In fact the only time we saw them was when she informed us that we were wasting our time as he was too difficult for people who "didn't know what they were doing" to manage.

Conclusion 

So, when we watch Panorama and wonder how people can hit those in care, remember, it's not just the violence towards the vulnerable which can be abusive, it's the simpler things like refusing tea or forcing people to eat quickly or indeed forcing people to do things not for any other reason than it's better for you.
It's also poor leadership, bizarre rules and regulations with no purpose and the demeaning of people through the use of control.

*interestingly the staff who never restrained him had a very good relationship with all the patients and would often be seen by the other staff as being weak and "giving in".  

Knee Jerk Reactions and Deja VU

My English A level teacher at school had a degree in History from Cambridge.  When I enquired why he was now teaching English, he said he now taught English "because sadly humans never learn anything from history".  I remember as a 16 year old thinking to myself, he's both astonishingly cool and totally cynical.

So, was he right?

I think that now, after all these years, I can finally see that he was not only correct, but astonishingly so.
In the care sector, I find it incredible that we haven't learned the following 10 simple truths.

1. The immediate  knee jerk response to a problem is often pointless and counterproductive
2. Not everyone knows what they are doing
3. If you need people to follow the rules, tell them what the rules are in simple unequivocal language and then explain what the purpose of those rules are
4. Often rules in care homes are pointless, arbitrary and through word of mouth causing needless anxiety and conflict
5. If you apply a lot of pressure to people, they don't always do the right things at the right time
6. If you don't treat your staff well, then chances are, they won't treat the people they are paid to support well either.
7. Everyone is to blame, but no one is responsible
8. All organisations think it will never happen to them
9. Training is a core element of your staff development and an investment not a cost or a burden
10. Every organisation needs a Leader

Further I'm also becoming increasingly depressed that every time there is an expose of poor treatment of vulnerable people in care people seemed to be "shocked".  I wonder why it is, that something that happens so frequently has the ability to shock people?  Let's look again at humanity and discover when we should be shocked by the way we treat each other.  Why are we more shocked by a man slapping an elderly woman than we are by someone who lives on the street because they've lost their job and have a severe mental health problem.  What about the child who's bullied at school and goes home every night wanting to die because they can't go on?  What about the 1million other elements of human behaviour that are less than human?

The reality is that we will never stop the abuse of people in care, but, if you put a good system in with strong leadership and appropriate training, then you will certainly diminish the likelihood of it happening.
 

What’s it like to be constantly observed?

For this exercise, please imagine what it would be like if you lived with someone who will make tea for you, take you to the shops, come over and chat to you 24 hours a day, 7 days a week.  Sounds good doesn’t it?  Well it might sound better if the person doing this is one of your choosing, maybe someone attractive or who you get on with and you could ask them politely to push off when you wanted some time on your own.

Sadly, you are living with a carer you didn’t really choose, they often change every eight hours and sometimes some group called “the agency” send someone over, in fact you’ve never met them before and they only seem to know your name and nothing else about you and you think he’s called “bank” or something.  It doesn’t matter though because “bank” won’t be here next week or perhaps even tomorrow.  He’s off to see another “client” or someone who uses stuff.  He must be important though because he often turns up dressed in some sort of uniform.

Imagine living in an environment where your every hour was documented. Not only did people check and note whether you slept well, but whether you'd had a bath, brushed your teeth, shaved, whether it was your period or leading up to, whether you’d had a good poo or whether you’d engaged in any “sexualised” behaviour.  Imagine there was a plan to manage your “sexualised behaviour” which was designed to stop you having any pleasure?

What if years ago you used to get angry because you couldn’t do things you wanted to and got frustrated?  How might it be if you were labelled as “challenging” from that point until the day you die?  Even though the reason you were angry was that you weren’t allowed to go to the toilet when you wanted or have a cup of tea when you wanted. 

Let’s imagine it’s you!

Scenarios you might relate to

1. The tram you take is replaced by a bus service which makes you late for work 3 weeks in a row.  Your manager writes it down in your work file.  Seems reasonable doesn’t it, after all they might need to monitor timekeeping as you’re paid by the hour. 
1. Now imagine that you were then labelled as poor timekeeper until the day you retired and nobody took into account it was the tram that was the issue not you?  What if for some reason you had moved jobs, but they still referred to you as a poor timekeeper?  In fact, you weren’t even aware that you were changing jobs until the day you were just dropped off at a different workplace (day centre).
2. You are seen shouting and getting angry at someone because they are about to break your favourite object.  It gets reported by a person you vaguely know to your boss, then it goes in your personnel file and the recommendation is that you attend anger management sessions to deal with your anger issues, but no one tells you why?
1.  Now imagine that if you don’t “control” your anger you won’t be allowed to go to the pub tonight or for a drive over the weekend.  In fact not only does it go in your file, but, anyone who has a vague responsibility to you also knows about your “anger issues”.  They might even have a meeting between some people (multi-disciplinary team) you’ve never met to discuss what’s best to do with you.
2. You’ve also noticed that not only do you have one carer but often a much bigger carer comes with them to “help out”, he’s not quite as friendly as your usual carer though and you don’t trust him.  Wouldn’t it be nice if you could avoid him?

How would someone view you if the information they received about you was written many years ago and had never been changed or updated?  Imagine if as a 45 year old, all the documentation about you was written when you were 25 years old?  What would it say and how would it be different?

What if you disagreed with these assessments of your personality, but had no ability to change the documents?

Welcome to the world of adult residential care! 

The BILD Factsheets, from BILD, the British Institute of Learning Disabilities

The BILD Factsheets, from BILD, the British Institute of Learning Disabilities

A series of informative fact sheets from BILD which summarise items which people working in Learning Disabilities ought to know, but often don't!

In particular for those working in Elderly care can I draw your attention to the Fact Sheet on Chemical Restraint.

Study suggests that more qualifications and more support increase social worker resilience | British Association of Social Workers

Study suggests that more qualifications and more support increase social worker resilience | British Association of Social Workers

Very interesting study which we will be keeping a close eye on.  We are especially concerned with the support element of the article.  Although we are a training company, it's all too often that both training and courses fail due to lack of proper setting conditions in the workplace.

Personalisation, Positive Approaches and the role of Staff

Often when we run training, we ask staff members a simple question, with regards to their jobs.

"How do you wish to be seen by the following groups"

• Your employer?
• The people you support?
• The public?
• Your family?
• Your colleagues?"

This might seem like an obvious question, and in fact, many of the responses we get are what you'd expect.  In general the responses received would be along the lines of "professional, empathetic, competent, calm and knowledgeable".  This is pretty obvious stuff.

However, we then ask a second question.  This question often requires us to let them know it's confidential, we won't tell their managers and we won't mention any names.*

 "How do you think you are really seen by those groups?"

This is where the wish to be seen in a particular way, diverges from the reality of how they are seen.
Sadly the responses we get are often heavily negative.

1. My employer doesn't trust me, I only see my manager when I've done something wrong (or they think I have).  I'm not listened to, I don't get support and if something goes wrong I'm blamed!  My employer thinks of me as the enemy.  I get positive input when I'm asked to do an extra shift.  My ideas are never supported.
2. The people I support see me as caring but don't often understand why I'm doing things, or why I can't let them do things.
3. The public think I abuse people in my care and that I'm not really anything more than a bottom wiper.  They think that people in care are either neglected or abused and they don't realise how hard it really is.
4. My family (unless they work in the field) have no idea why I do this and don't understand why I don't work somewhere with more money.  If they work with people who challenge, they will often be asked why they don't just "hit them back".  My family can't get their heads around why I would never do that.
5. My colleagues think roughly the same as me.  We are doing our best with very few resources or often any real idea who to do things.

For us, this leads to a dilemma of massive proportions.

Most of the current training in the social care sector centres around the concept of positive approaches to the people we care for and developing services that are personalised.  We are supposed to treat people as people, not use derogatory words, and not to dehumanise them.  At least that is what the training and guidance would have us indicate.

So, why is it, that this sometimes doesn't happen?  As with all things, training is only one half of the story.  For good training to be useful or indeed for it to achieve what it's supposed to,  it needs a clear support system in place.  It needs the setting conditions for success.  It needs to be reflective of the organisations philosophies and it needs to reflect the way the organisation is run.

It cannot contradict the underpinning concept of the training.  For example, if you expect a member of staff to treat a service user with compassion, understanding, empathy and in a professional manner, but, then you treat the member of staff as if they were a child who is not able to understand, you

• dictate rather than engage,
• shout rather than speak, 
• instruct rather than explain and most importantly in this relationship, if 
• gloss over and just give them a printout or a "policy" rather than educate and get them to understand what you want.

 Then, you as an organisation are failing to continue the chain of events that needs to be followed.  We need to ensure that if Staff are going to have compassion and understanding then that really needs to be the way they are treated.  Learned behaviour is one of the most powerful tools around.
 The relationship between all the parties in care is complex, the service user should be at the heart of the chain, but, each link is only as strong as the weakest link.  These links would consist of

Owners - Managers - Staff - Families - Inspectors

All leading towards

The people that we support

So what are these setting conditions that avoid the chain becoming fragile and the process breaking down?

• Supervision which is designed to coach rather than monitor the person.  Coaching someone to be better at their job will engage the member of staff far more than telling them to be better.  Most managers are unaware (or seem to be) that most staff don't actually look forward to supervision, they see it as a time to get told off and avoid talking about what they don't know.
• Appropriate training linked to need and to policy.  Training that tests knowledge is far better than training that doesn't.  Training that just awards attendance or is so simple you don't need to do the course to pass is actually pretty pointless.  Staff drift off and don't place value in it.
• A debriefing system independent of line managers
• Managers who attend the same courses as their staff as a participant, not as a manager supervising their staff.
• Clear guidance which staff can understand and follow.  
• Don't stop learning!  Organisations who believe they know everything and they haven't got any issues are often the ones in the most trouble. 
• Use positive approaches as a theme for your organisation at every level, not just expect the staff to exhibit it when dealing with those in their care.
• Use personalisation all the way through your organisation, each person works better when they are valued irrelevant of who they are.
• Reward people for doing a good job.  Often, don't take them for granted and be nice to them. 
• People always work better for those they want to work for, not those they have to work for.
• Place value in your staff and they will place value in your organisation.
• Learn.

If you think your organisation is getting it right, then that's great. If it was my organisation I'd personally sing it from the roof tops.  Do a 360 review with hard questions asked, I'd bring in advocates and get them to ask the people we care for what they think.  I'd then put it on all my advertising and make it public information.  However, if you are worried about the outcome of a review, or you'd not want to publish the results, then, it might be an idea to do something about it.
 

Maybe a better question should be,

"Would I be comfortable with a Panorama journalist working undercover in my service?"




  *Unless of course something is happening which is illegal or unethical in which case obviously we have to pass things on.

"Don't Call Me Dear"

Recently there was  some guidance published by the Commission on Improving Dignity in Care which according to certain media suggested that if you called a person you were caring for "dear" it was belittling and you should be sacked.  I suspect that this mixing of messages was more to do with journalism than the report itself which says no such thing.  Dignity in Care Report.

The report is a sensible (if at times obvious) list of things which in should form the bases for every care home and hospital's approach to working with those in their care.  Referring to people obliquely or directly as "bed blockers" or "hip patients" dehumanises the patient and can allow for the instigation of a unintentional abusive relationship between carer and cared for.  Often the first stage of abuse is a change in the power structure, with one group starting with power and then increasing it by reducing the power continuously of the weaker group.  One simple method of doing this, is to refer to the person by a feature, attribute or condition.  None of us wish to be discussed solely as an illness or a personality disorder, we are people with an illness. 

Some of the recommendations are astonishingly obvious, but often just don't happen in the day to day running of a hospital or home.  As an example, you'd think that training staff to understand dementia is a given, but it so rarely happens even in units that are supposed to be specialists in dementia care.  It's all well and good having a senior management team who've got loads of qualifications in dementia, care, understanding behaviour and principles of personalisation, but if you're direct care staff have no idea what they're doing, then it's pointless.

Encouraging relatives and family to feedback and engage in the process is often blocked by organisations who are uncomfortable being scrutinised.  It's simple enough to do, it's hard to put into practice without becoming defensive about the service you provide. 

However, let's not lose sight of the fact that care staff are also people and need to have some form of coping mechanism in dealing with what can often be a very distressing job.  How often does a member of A&E staff have to see a dead child before it has a massive impact on their mental health?  How often does a member of staff in an Psychiatric Ward have to see a person with horrific scaring from self harm before they become immune to it?  How frequently does an Oncologist have to see a child or adult suffering and intense pain from cancer before they find a way that helps them cope and sleep at night?  All of us will use humour as a coping mechanism and medicine is no different, the problem is that this humour rarely translates outside of the job. 

The guidance given makes perfect sense, it's succinct (so rare in this day and age of guidance), logical, easily absorbed and most importantly humanises those who might be dehumanised.  But, and it's a big one, let's not change demonising patients to demonising those who care for them.