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".  

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! 

"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.

Standards of Care

We have just had a massive exposure of abuse at a Learning Disabilities Hospital in the South West of the UK followed by exposure of poor management and potential abuse cases in a large Elderly Care organisation. 
The most surprising thing to me, is that people are surprised by this.  When we ship people off to care homes and hope that out of sight out of mind is a true care model, then don't be surprised when under trained, undersupported, underqualified, undermotivated staff become prison guards.  To be honest though, having watched the recent Strangeways documentary, I'd rather have them in charge!  They seemed to be more switched on, better trained and ultimately had more empathy with the people they had a duty of care towards.  They smiled more, interacted more and seemed to be better carers.
Over the next few days we will be examining the setting conditions for both good and bad care models