Some thoughts on End of Life Care

‘Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.’    
Dylan Thomas

The poem above, written by Dylan Thomas in 1947, was inspired by his father who was nearing the end of his life. I am reminded of it now, as we approach the first anniversary of my own father’s death. He had vascular dementia and in the last months of his life he both ‘raged’ and ‘went gently’ into that good night. And I raged and went gently with him.

I raged at the bureaucracy, the ‘labels’ attached to him, and the lack of anything resembling person-centred care. I raged at a hospital who seemed incapable of listening to my argument that maybe, just maybe, his ‘aggression’ was due in part, not to his illness, but to his frustration at being cooped up, against his will, in a hospital ward for months. I raged against the assumption that, because he had a dementia, he had no capacity to make his own decisions and, having Lasting Power of Attorney, people asked me to make them for him. ‘Have you asked HIM’, became my mantra, as we weaved a troubled path through options for the future.

But … along with all the raging there were also some wonderful times. Wonderfully gentle times, when we would sit and talk together, or just ‘be’ in companionable silence. The subjects of conversation were often apparently random and, as his ability to express himself diminished, I frequently had to play guess the topic. But we connected in a way that we hadn’t done since I was a child – solely in the ‘here and now’, no past, no future, just these precious present moments. And, as the rage leaves me, these are the memories I am left with, the gentle walk together to the final ‘goodnight’.

Once we had finally managed to negotiate his ‘release’ from hospital, dad was admitted to a local nursing home, where, (surprise surprise!), the aggression disappeared and the gentle affable man who was my father resurfaced. He died two weeks later, and I will be forever comforted by the knowledge that in those two weeks he was surrounded, not by bureaucracy, systems, and flow charts for ‘safer patient bundling’ (whatever that may be!) but by people – people who were prepared to engage with him in what was left of his life. People who invested their energy and emotion into making every day as positive as it could be. My last memory of dad is leaving him, sitting in the dining room, eating carrot cake and custard, with a big grin on his face.

At the end of life, each story is different; some people rage, others go gently, and some do both. It is a great skill to totally ‘be’ with those who are at the end of their life. We often don’t know what to say; we confuse being ‘professional’ with being remote and unemotional; we rely on systems to try and shield us from the emotional pain. Or, we are just trying to hold it all together, because we are reminded of the deaths that have impacted on our own personal lives, deaths that come racing back to us as though they happened only yesterday. Perhaps that is why it is sometimes easier to focus on the processes and tasks than the person. But at what price for the person whose final goodnight is just around the corner?

 

So, what do you hope to get out of the session?

This is a question we often ask at the beginning of training and have become used to the inevitable replies of:

‘I’ve come for an update’

‘Well, it’s mandatory isn’t it?’

‘My manager said I had to.’

‘Because I value the people I support, and I want to be the best I can be’ – said no-one, ever!

You can spot them a mile off. They enter with arms folded, motivation to learn dialled down to zero and that look on their face that says, ‘yeah, I know all this stuff’. Sometimes, they thaw; maybe they had just had a bad start to the day or have other things on their minds. Some we manage to win over in a kind of pincer movement, with us at the front exuding enthusiasm and energy and the other participants asking really interesting questions and sharing their experiences. When this happens it’s joyous and we love comments like, ’I thought it was going to be boring, but actually I’ve really enjoyed it and learned a lot’.

And some? Well, some remain stoically disinterested for the whole day. I honestly think if we performed cartwheels or magic tricks their expression would stay the same – the yawn may be metaphorical, (although not always) but the message is clear, none the less; ‘I don’t want to be here’ and ‘when is the next break?’

So, they spend their time staring vacantly into space, sighing loudly, having ‘whispered’ conversations with their friends, or checking their phones every few minutes for Facebook updates.

You think we exaggerate? We don’t.

Obviously, this doesn’t apply to everyone who attends our training, – we would have given up by now if it did; and, to be fair, the ‘I don’t want to be here’s’ are in the minority, even if their ‘presence’ is felt by everyone else.  

We do try and make our training as relevant and interesting as possible, whilst acknowledging that issues of abuse and neglect aren’t the jolliest of subjects. But … Safeguarding, the Mental Capacity Act, Equality and Inclusion, and Human Rights are fundamental to good practice. If people are motivated to do their job well, then they will be motivated to learn how to do their job even better. As we face those who are bored and disinterested across the training room, we ask ourselves the question, ‘What on earth is their practice like?’ - and not from a positive perspective!

Training staff isn’t cheap, so surely it makes sense to squeeze every last drop of value possible out of it including, most importantly, the transfer of the learning into practice. And people who are on their mobiles, chatting to their friends or sitting with arms folded, challenging us to ‘entertain’ them, aren’t going to be transferring anything anywhere!   

So, for those of you who arrange staff training please think about the following:

Why are staff attending training and how to you prepare them for the event?

What do they hope to learn and what do you want them to learn?

How will you evaluate their learning when they get back to the workplace?

How will you support them to put their learning into practice?

How will this benefit the people who use your service?

What will you do about those staff who resolutely refuse to learn and change their practice?

If you do think about these things and ask the questions, it may be that we get a more varied response to the question. ‘So, what do you hope to get out of the session?’

PS: To those of you who attend our training with enthusiasm, commitment and curiosity – thank you. You are the reason we do what we do.

 

Safeguarding Adults: A View from the Training Room

 

We were delighted to be asked by Research in Practice for Adults to write a strategic briefing document for Safeguarding Adults Boards on the effectiveness of Safeguarding Adults training. This blog reflects our response to writing the document and offers a small glimpse into our world as Safeguarding Adults trainers, with all its joys, frustrations and challenges!

The first challenge? Safeguarding training is ‘mandatory’ and most people are not there out of choice. Some arrive full of trepidation and anxiety, a few arrive expecting the training to be death by PowerPoint, and some, thank goodness, arrive with enquiring minds and a desire to improve their practice. Most however, have not thought about what they want to get from the session, beyond the mandatory ‘update’ – and that worries us! It worries us because by ‘update’ they are thinking solely of policies, procedures and process, not a person-focused, rights-based approach to safeguarding that meets, wherever possible, the desired outcomes of the individual concerned.

And this is the second challenge. In our experience, safeguarding is frequently driven by a fear of being blamed by other professionals for ‘getting it wrong’. There is often discussion from delegates in the training room about making a referral to ‘cover our backs’ or the ‘Spanish Inquisition’ atmosphere during safeguarding conferences. Individual culpability rather than collective responsibility seems to be perceived as the order of the day, and there is a belief that by sticking rigidly to process and timescales, any ‘blame’ will be avoided. Yes, as trainers we can, and do, give people information on policy, procedures, timescales, and how to fill in the forms – but the filling in of a form never safeguarded anyone! What safeguards people is a culture that values them and upholds their rights to make choices about how they live their lives, including the right to take risks.

The third challenge to effective safeguarding training? As trainers we find it extraordinary that some practitioners have little grasp of the legislation that should underpin their practice. They speak of their ‘duty of care to keep people safe’ as though it were a comfort blanket against the cold wind of legislative requirements, whilst conveniently forgetting that following these requirements is a fundamental part of their duty of care. If we are to safeguard adults in a person-focused way, a good understanding, and implementation of the Mental Capacity Act and the Human Rights Act is surely paramount. They are pieces of legislation that are common to all safeguarding partners and are therefore, powerful tools to utilise as a means of ensuring we work, in partnership, towards the outcomes the adult wants, as far as possible.

Perhaps the most fundamental challenge for safeguarding training however, in our opinion, is that it does not take place in a vacuum, but in established cultures that can support or hinder its transfer into practice. Safeguarding training alone, however good, will not establish an effective safeguarding culture in organisations; it is only part of the picture. Values driven recruitment, effective induction and probationary periods, quality supervision and excellent leadership, to name but a few, are probably more effective in preventing abuse and neglect, and responding effectively to concerns, than any safeguarding training.

So, how do we meet these challenges? How do we try and ensure that training is the best it can be and that learners can put their learning into practice?

Firstly, we believe that learners should know why they are attending training – and not just ‘because it’s mandatory’. They need to be aware of their legal responsibilities and accountability for safeguarding. They also need to have considered what they want to get out of the training and how they will be supported by their organisation to transfer the learning into their practice. This necessitates a three-way partnership between the learner, the organisation and the training provider, with each being clear of their roles in the learning and transfer process.

Secondly, it would be helpful for training to emphasise a rights and values-based approach to the safeguarding of adults at risk, with a genuine focus on working towards the desired outcomes of the person. However, in order to do this, we need to let go of the illusion that training on process and timescales will make everything better, and plunge headlong into the often messy and complex issues of people’s real life situations. It is, after all, their safeguarding, not our ‘back covering’. This is not to suggest that knowledge about processes and timescales isn’t important, but to quote Making Safeguarding Personal (2014:4), there needs to be ‘a shift from a process supported by conversations to a series of conversations supported by a process’. Therefore, training content, at all levels, needs to shift its focus too, in order to support practitioners to be confident in having those, sometimes very difficult, conversations with people about how they want (or don’t want) to be safeguarded.

All this is perfectly achievable. However, it cannot be accomplished in a culture where the fear of ‘blame’ drives practice, and consequently drives the content of training. Individual practitioners, managers of services, commissioners and Safeguarding Adults Boards all have a vital role, and responsibility, in supporting the necessary culture shift, away from individual blame and towards collective responsibility.

The Care Act 2014 talks about Partnerships as one of the key principles of Safeguarding. We tend to think of partnership working in terms of those directly involved with the adult at risk. We would like to see trainers routinely involved as partners in the broader Safeguarding context. We need to start having some meaningful conversations about how we can support the culture shift, because as trainers, we may want to ‘change the world’ but we know we can’t do it on our own.

 

A fantastic new service in Cornwall - Guest blogger Kelvin Leighton-Julian

SHOCT Kernow is a new HIV and sexual health information venture in Cornwall. Started in March this year by Kelvin Leighton-Julian, SHOCT Kernow aims to improve access to HIV and sexual health information and services to the community in Cornwall. Whilst SHOCT Kernow aims to provide this service to all, its speciality and primary focus is around the LGBTQ community, specifically gay men.

Why was SHOCT Kernow set up?

Simple, people have sex……phew, there I said it! It’s unbelievable, but true. Sex should great, it should be fun and someone should be able to be fully informed before they have it. However, people are still putting themselves, unknowingly, at risk of HIV and STIs (sexually transmitted infections). Some are doing so because they don’t have the knowledge to be able to protect themselves properly, some don’t have a true understanding of the implications that poor sexual health can have on their wellbeing or self esteem and others are embarrassed to make that first contact with a sexual health service or clinic.

Late diagnosis of HIV in people in Cornwall is well above the national average but overall positivity rates are well below the average. This means that out of those few people who are testing positive a high number are doing so late. This means that they have been living with HIV unknowingly for some time and have only presented to a clinic because they now of symptoms that relate to a low immune system. During this time they may very well have infected other people without knowing.


SHOCT Kernow wants to empower people, through learning, to think positively (excuse the pun) about their sexual health. In turn they can then protect themselves, protect others and empower others to do the same. It’s all about #PayingItForward.


It’s not just about the individuals though. Often there are opportunities for services and their staff to provide someone with information which could empower their service users but due to a lack of training it remains a missed opportunity. SHOCT Kernow wants to embody a culture of peer education within Cornwall allowing appropriate HIV and sexual health information to cascade freely down to the service user so no-one is denied access to the knowledge or service that they are entitled to.

You can find out more about SHOCT and the work it does at: https://shoctkernow.wixsite.com

FreeBird looks forward to working with Kelvin very soon - watch this space!!

Read all about it!

Read all about it!

There is no place for complacency or turning a blind eye to what happens, on a daily basis, when someone is at risk of poor practice and abuse or neglect in our society.

However, there is another story. It is one that is often forgotten by the media because it is not considered newsworthy. It is a story of compassion, inspiration and hope; a story that is told day-in, day-out, in unremarkable places, by remarkable people.