Valuable, Vulnerable: Vaccinate!

There can never be one voice of people with learning disabilities.

People with learning disabilities are not a homogenous group, once you’ve met one person with a learning disability you have met one person with a learning disability.  People with learning disabilities are unique individuals, just like everybody else.

Each individual you meet with a learning disability will have unique skills, strengths and abilities. Some people with learning disabilities sometimes need extra help to stay healthy, safe and have the best life they can.  The level of support needed (if needed) will look different for each person.

The impact of COVID-19 has affected all groups in society and will continue to do so. The pandemic has continued to highlight the premature and avoidable deaths of people with learning disabilities and exacerbated the health inequalities and inequities experienced.

Discrimination in action or inaction

One of the first sets of guidance to demonstrate an inequitable approach was the inclusion of the frailty tool in the rapid NICE guidelines, leading to much anxiety and a thankfully successful challenge from people with learning disabilities, their families’ advocacy and professional groups.  

Then came the visiting guidance, which meant people with learning disabilities who may need additional support to stay safe, comply with treatment and understand the procedures and interventions they might need could be greatly disadvantaged by not having a loved one, a key worker, or a specialist staff member who could support an admission to hospital.    

A concern that has been evident since the start of the Covid response was the inappropriate application of DNACPR, currently making headlines again.  Raising questions about how valued the lives of people with learning disabilities are.

Throughout the pandemic has been the challenge from people with learning disabilities about the lack of accessible information, the failure to use clear and simple messaging and an apparent afterthought about how to get messages out to those in society who require information in an adapted way, you know, by making reasonable adjustments (like the law says we must).

People with learning disabilities are dying disproportionately regardless of the level of cognitive impairment they have.

Evidence has consistently identified that people with learning disabilities are at greater risk of dying than the general population from Covid 19 regardless of the level of learning disability they have. See Office For National statistics the most recent report from Public Health England and in preliminary findings from the Scottish Learning Disability Observatory (subject to peer review) and we know a new LeDeR is on it’s way.

The ‘prioritisation’ of people with learning disabilities for the vaccine is highlighting many shortcomings in how records are kept of the level of ability a person might have and how their needs might be highlighted. A reliance on primary care coding to ensure that those with profound and severe learning disabilities are invited for the vaccine in group 6 is unreliable and causing concern.  The complexity and volume of the codes means that people with learning disabilities are not able to safely be identified in this way, this has been recognised by many campaigners with the call to vaccinate all people with a learning disability. The public’s attention has been captured by the recent admission of DJ, Jo Whiley’s sister Frances to hospital and by Author Ian Rankin appealing for his son to be vaccinated. Self advocates Ciara Lawrence and Scott Watkin, among others have also campaigned and articulated the importance of vaccinating people with learning disabilities. 

There have been news stories, recognition in parliament and front pages highlighting these issues.  In the Twittersphere there has been some division.  A frustration from those highlighting the ongoing inequality which leads to the likelihood of people with learning disabilities facing barriers to the acquisition of health, that there is a continued reference to the vulnerability of people with learning disabilities which reinforces stereotypes of the burden, the drain on the state, the eternal child etc. etc. 

Valuable, Vulnerable: Vaccinate!

In 2015, the LD Professional Senate wrote that ‘it is clear that life is better today for most individuals and their families’ National LD Professional Senate report 2015. Many people with learning disabilities are able to live lives in places of their choosing with people who they want to be with and are able to manage their own affairs with little intrusion from services or supports.  

It is an unfortunate truth that must be acknowledged, people with learning disabilities can be vulnerable because of the many barriers faced in society, for example: attitudinal, physical, technological or financial.  In Covid times this has been more so, some people with a learning disability are likely to be especially vulnerable to the physical, mental and social effects of the pandemic. For those with cognitive impairment the challenge in receiving and understanding information that will protect them can mean relying on their family, carers, advocacy groups or professionals to be vigilant on their behalf.  For others their family, carers, advocacy groups or professionals will have to speak on their behalf.   

Much work has been taken forward over the years to reduce the impact of the negative perception and stereotyping of people with learning disabilities.  It is unlikely that people welcome being described as vulnerable, in fact I read a lovely story last year about a child who had misunderstood the word vulnerable to mean valuable and this was how the people supporting him pledged to describe people in their care going forward.  It is important that lessons are learned from the impact of COVID-19 on people with learning disabilities and their families. 

Families, carers, professionals and advocates have shown repeatedly how they can work together, with people with learning disabilities in addressing these barriers. Highlighting each others shortcomings as only representing one demographic, one voice, does not move the conversation on, personal attacks alienate, in any case, it’s not kind.    

Reducing health inequalities is within our reach and we not only have a moral duty to work together to do so but there is a legal responsibility that this is acknowledged and acted on too.

Feeling pain & valuing people

I’ve been catching up on George Julian’s tweets on the inquest into Rachel Johnstone’s sad and avoidable death. Rachel was a 49 year old lady who died in November 2018 after having all of her teeth removed, Rachel was described by her family as a lovely girl who loved her life, music and dancing. She lived in a residential service, staffed by nurses and had been experiencing pain in her mouth preventing her from eating. Her mum was anxious about her having so many teeth removed in one go and the decision was made to do so while she was under general anaesthetic. Post procedure there is some contradiction and little evidence as to the information provided, her carers say they were given some paperwork and no advice on how to care for Rachel after having 19 teeth (and fragments removed) under a general anaesthetic. At the inquest it was recognised that registered nurses where Rachel lived failed to carry out appropriate physiological observations post-surgery and did not escalate concerns about her presentation to get the emergency response she needed. She died of cerebral hypoxia, aspirational pneumonia and as a result of neglect.

Last week I had toothache.  Anyone who has seen me or spoken to me has known about it.  I’ve been in pain, holding my face, distracted during conversation, uncomfortable while eating, drinking, talking and sleeping.  I managed to get into my dentist where she made an assessment of my pain and held a discussion about the best way to save my tooth and resolve my problem.  My dentist started a root canal, removed part of an old broken root and gave me a care sheet which I have followed, rinsing with salt water, four hourly pain relief and generally taking it easy on my new temporary filling, I need a further two appointments to resolve this issue. 

Communicating pain

My personal experience and the failings of care for Rachel Johnstone have made me think about the people I have worked with and cared for over the years with a learning disability.  People who have often been reliant on others to recognise changes in their behaviour that might indicate they are in pain.  I thought about a young person who’s carer told me about them approaching holding a knife and tapping the side of their face.  When the carer looked, the young persons face was hot, swollen and towards the back of their mouth was a large, visible abscess.  Undoubtedly this young person was in pain and needed to communicate that in a way that those around them could understand.  Without the verbal language to describe pain and with cognitive challenges that might mean pain feels different, is difficult to localise or understand, a person with a learning disability could be experiencing pain without others knowing. 

I’ve heard lots of stories in my career of people who have experienced pain and not been able to communicate this. Sometimes people with learning disabilities live for a long time with conditions or injuries that could be causing pain, it is thought that those who are reliant on wheelchairs are often living with chronic pain. There are also things that may be detected in health checks or investigations of other things e.g. perforated ear drums or detached retinas due to self-injurious behaviour, dental carries or foreign bodies inserted or ingested. I know of people who have broken a bone in their foot or leg and continued to walk on it, the injury later being detected by swelling, redness and changes in their behaviour. A recent question on twitter highlighted many of these experiences, parents and people with learning disabilities and or autism reflecting on situations where pain was detected or discovered.

The danger of myths and misconceptions

There is an unfortunate misconception that people with learning disabilities do not feel pain in the same ways as others. I’ve heard this said, out loud, by people who should really know better.

This myth is damaging to how we care for and support people with learning disabilities, how we work with and respond to their loved ones and carers and how health inequalities can continue to be reinforced, leading to avoidable and premature deaths of people with learning disabilities. To say something like ‘they don’t feel pain’ gives out messages about how people with learning disabilities can continue to be viewed in society, a dehumanising assumption being made, reinforcing the status of ‘other’. A significant contribution to this belief is due to the paucity of research in this area for people with learning disabilities, who may be excluded from trials and the development of the evidence base due to a variety of reasons. There is a lack of understanding of pain for people with learning disabilities because they are under represented in the evidence base and their experiences are not captured, their voices not heard.

The difficulties with communication and exhibition of behaviour which to others is unusual or difficult to understand can mean diagnostic overshadowing happens, the persons presentation is attributed to the fact they have a learning disability or have in the past, displayed behaviour described as challenging.  Increasingly though, there is exposure of poor quality care and treatment of people with learning disabilities who are not afforded the fundamental assessments of their needs.  Nursing observations and monitoring of signs and symptoms of deterioration and change are essential in promoting positive outcomes for people with learning disabilities.

Recognising when someone is in pain

It is really important that we look out for pain, that those supporting the person consider the possibility and at a basic level recognise events which may contribute to pain e.g. post self-injury or post seizure- does the person have a headache? During the menstrual cycle, not just on the days of a period, but the days leading up to and mid cycle events that could also be painful. Post-operatively or post-dental treatment, it is so important that people are not treated as if they can cope with a lot of pain, this is inhumane and could contribute to ongoing problems and distress, damage to relationships and trust in being cared for.    Evidence indicates that people with learning disabilities are likely to experience pain, either chronic or acute, to the same level we would expect in the general population and more recent research from Doody and Bailey (2017) indicated that people with learning disabilities are more likely to experience frequent and severe pain than others.

When in pain people with learning disabilities:

  • Might find this difficult to describe or describe it in ways that are difficult for others to recognise
  • May be hypo or hyper sensitive to the experience
  • May communicate pain by changes in their behaviour
  • Might vocalise in different ways, louder or quieter, change in frequency or tone
  • When in pain, may withdraw and be less motivated to engage in activities or regular routines
  • May not be as motivated to eat or drink or do other things they usually enjoy or engage in
  • Sleep patterns might change or they may seem restless

It is important to remember that pain is a unique experience for everyone and some people with learning disabilities may indicate pain in other ways.

Whenever there is a change in a person’s behaviour we should always seek to rule out an underlying health condition, this can be incorporated into a full functional assessment to help understand the behavioural presentation and inform future planning for the persons needs.  Involving parents and carers in the process is essential to having a complete picture.  There have been situations where people have been described as exhibiting pain related behaviour ‘for attention’ it is important that a statement like this is evidence based and not a not judgement. 

We must make sure that people do not suffer pain, unnecessarily, because of others judgements about how the person might communicate or be experiencing pain. 

Using a pain profile or assessment can be helpful to support those who don’t know a person with learning disabilities well to understand what a person looks and sounds like when they are in pain as well as how they might behave. The DisDat is a good example of capturing a baseline understanding of when someone is not in pain to be able to measure a change against. Some pain pictures are described in Moulster (2020) highlighting the importance of nursing observations and making an evidence based assessment and description of pain related presentation.

We have the resources, the accessible information, the tools that are designed specifically to meet the needs of people with learning disabilities but something keeps going wrong. Are the lives of people with learning disabilities not valued in the same way as others? Rachel Johnstone deserved recognition of her value as a human being with unique needs and vulnerabilities, she required a specific level of support, nursing assessment and intervention and she was failed.

References

Barney, C.C., Anderson, R. D., Defrin, R., Genik, L.M., Mcguire, B.E., & Symons. F.J. (2020) Challenges in pain assessment and management among individuals with intellectual and developmental disabilities. Pain reports [online]:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7302581/

Doody, O., Bailey, M.E. (2017) Pain and pain assessment in people with intellectual disability: issues and challenges in practice. British Journal of Learning Disabilities. 45:3, 157-165

Moulster G (2020) Identifying pain in people who have complex communication needs. Nursing Times [online]; 116: 2, 19-22. 200122-Identifying-pain-in-people-who-have-complex-communication-needs.pdf

Capacity to comment on Covid

Creating digital content, capturing stories and experiences, documenting history

Where I work we have a bank of digital stories, staff are trained in making patient stories and capturing peoples experiences, sometimes as a result of a complaint, to share or celebrate good feedback or provide information and always for learning. we are a learning organisation and we want to improve our services, these 2 minute stories can be thought provoking, challenging, emotional and empowering. Over the last couple of weeks I have been working on a story of a person with a learning disability who contracted Covid:19. This person spent a number of weeks in hospital, in ITU and wanted other people to know what that was like for them, that they survived. A colleague completed a very detailed story outline with lots of medical information, terminology and scary sounding procedures, detailing how unwell the person was and what level of care they needed. I was very keen to make the story and have a positive image of a person with a learning disability who has survived Covid:19, particularly in light of the ongoing health inequalities, barriers to access and the negativity back in March when we heard about the potential use of inappropriate tools to threshold levels of care and the NICE rapid guidelines which advocated the use of the frailty score.

I have needed to be even more creative in capturing the story and making it than usual due to social distancing and with the help of technology and our amazing arts in health coordinator Prue.

Versions of the same story

When I asked the person to tell me their story they talked about never being in hospital before, being frightened and the importance of their family members who were allowed to wheel them down to surgery and be there when they needed them. They talked about the nice nurse who they liked who gave them a drink, a lollypop and a packet of crisps and the Dr who said ‘well done, two fingers up’ (they meant to say thumbs).

The story is slow, laboured by breaths which are deep and drawn and it’s powerful. Each time I listen to it I think of the Maya Angelou quote, so commonly used in nursing: ‘people will forget what you said, people will forget what you did, but people will never forget how you made them feel’.

This person has the capacity to consent to the story being made, they can consent to the pictures being used and their family and team are supportive of the process and see the value in telling the tale and I am the lucky one who got to be immersed in the process.

But this has got me thinking…………….and in partnership with colleagues who are keen to raise and recognise the voices of people with learning disabilities we are asking: What about people who are unable to consent? Some people we support might not have the skills to actively think of and intentionally communicate these ideas. Indeed, the story that I thought I was going to tell based on the request form is very different to the finished version, but equally as important, if not more so as it is the persons words, their version of events and their reality.

Finding representation of their communication is empowering and enabling and can only be in their best interest.

We are living through a pandemic, a historical event, which has presented many challenges for all of us.  People with learning disabilities are experiencing this and will have a unique insight into how Covid 19 has affected them. There are often times that people with learning disabilities are excluded and devalued by society and there are many examples of this in a Covid 19 context.  By supporting people to be included in these projects, they have a chance to tell their story and be heard, recognised and valued.

People with a learning disability during  COVID-19 are able to share their “lived” experiences in a variety of  formats, therefore their photograph, their words and their pictures make a valuable contribution to our understanding of the impact of and learning from events.

If people with a learning disability are not given the opportunity to be involved, we are not able break down barriers, judgements or stereotyped beliefs about people who have learning disabilities.  Inclusion in this project gives a new insight and allows us to get a truer understanding of the individuals, if they are involved by stories or photographs, services and society may be able to challenge ways of  working on assumptions and stereotypes.

As a colleague recently wrote in a proposal for a co-produced document of living through Covid (A Zine, no less): ‘Best interest must consider the widest forms of communication possible and utilising photos or video of people in their day to day situations, means that people who have little or no language can also contribute. Otherwise, we fail to include their day to day non-verbal or limited verbal communication which we do understand, within a co-production approach to care’.

Joining up the dots: Strategic thinking clinicians .-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.

A few years ago one of my friends had feedback after a job interview where she was unsuccessful.  She was told she wasn’t demonstrating the capacity to think strategically in the way that the role required.  We unpicked this a bit, she was upset and had really wanted the challenge of the new role, the change of pace and position that the role would bring but also the progression and opportunities.  Neither of us felt that we really understood what that feedback meant.  It feels like a bland, throw away comment that excludes the recipient from the discussion and I’ve been thinking about this after some helpful conversations last week about how I do my job.

What does strategic thinking really mean and how do you know if you are doing it?word cloud strategy

Most people reading this know that I am a behaviourist at heart.  I love working with people who’s behaviour is/was described as challenging, seeking to understand what drives their behaviour and always asking ‘why does X need to do that?’  I don’t need to hit my head to get a cup of coffee, so why does X?   The training and mentoring I had which allowed me to put those puzzles together, triangulating data and undertaking a functional analysis used all of my key skills as an introverted, reflective, analytical, intuitive thinker (I know who I am!).  I have always been lucky to have worked with role models and leaders who thoroughly valued an evidence-based, person-centred approach. Going on to do an M.Sc in positive approaches to challenging behaviour helped me hone those skills and I continue to be a reader, a deep thinker and a keener (a new word I learned last week).

Understanding the key drivers

As a nurse consultant it is essential to read widely, keep up to date with the evidence base and be able to input into policy from a practice based perspective. That ability to source and select evidence that is credible, reliable and synthesise this into a workable position, in accessible language is essential, having an academic background helps. As an undergrad our nursing programme was built on reflection and critical analysis. For me, this means seeking to understand information, the evidence and also the thoughts and feelings associated with the issues that are raised. Walking in someone else’s shoes helps to understand why they think and feel the way they do, but it is essential to also step that to one side to see what these things mean more broadly and why that matters.

strategic thinking

Macro thinking

Reflecting on the discussions and the feedback my friend had.  I think after years of working with, knowing and being supported by this fantastic person it’s likely that the responses that she gave to the interview questions would have been heavily embedded in clinical practice and service user experience, values laden and cemented with passion, compassion and doing the right thing, always.  Those are hugely inspirational values and attitudes to demonstrate in nursing and particularly when working with the most valuable members of society, those who are precious and important to so many and need to have their voices raised and heard above others to have their needs, wants and rights achieved and fulfilled.  However, I’m not sure that this demonstrates strategic thinking.  It demonstrates an ability to think in a very person-centred, individualised, focused and deep rooted way.  It is focused on the individual clinical situation. It says: ‘I have my strengths, skills, I know what works and what others need to do and that’s my position’.

It is not that people who think strategically do not think about the person and what is right for them, but they can also demonstrate an openness to thinking about other perspectives, experiences and opportunities that broaden out one persons experience to the value of others and not just in a human way.  Strategic thinkers still need to fully understand the person and what is important to them, knowing what people with learning disabilities and their families want from your service is essential in being able to deliver the experience that makes their lives better and increases their opportunities for health, well being, fulfilment and active participation in society.  Co-producing and collaborating underpins this, thinking strategically is about knowing how to make this happen.  Knowing who to work in partnership with, building those networks and joining up with people who do not always think like you, that is a fundamental.

long term strategic thinking

Understanding the challenge

This relies on being pro-active and intuitive, understanding the direction of change and travel across different levels of the system including policy and organisational drivers so we can see what is coming and prepare to meet that challenge.  In any situation it is important to ask how much of it we understand, in the last couple of years I have been able to say to my colleagues, ‘I’m not sure if I fully understand what’s going on here’, their broader knowledge of some of the historical, relational or cultural factors have supported my ability to see the bigger picture and make that link back to the drivers that are building that long term perspective.

The Novid day

A really helpful exercise I was involved in recently was in partnership with the service managers in our community teams to collect in the moment information on how our community teams were adapting to the challenges of supporting people during our Covid 19 response.  We have been working on developing our community learning disability teams because ultimately we want to provide the best service we can for people with learning disabilities and their families. The Improving lives programme has helped guide this, as well as the work from the learning disability professional senate and of course our own commissioned review.  Understandably Covid 19 had overtaken  some of this and so an opportunity to engage with the professions who make up the CLDT and appreciate their perspectives on how they are delivering an essential and valuable service during such a challenging time has created a new dynamic to the work done.

This rich information about how people with learning disabilities are being supporting in creative, innovative ways focused on access to health and maintenance of mental health and well being has allowed us to further understand that ‘core element’ of what a CLDT looks like and plan for going forward in line with the wider review of the community team model.  A couple of us Skyped this week, my colleague suggested that we give ourselves a ‘Novid’ space to reflect on some of this and reflect on what it means, looking at the opportunities and threats from these new ways of working and visualising a future operation of the CLDT model.

That’s strategic thinking.  Bringing the persons experience into a model for future planning.

I have seen a colleague doing this expertly throughout the COVID 19 response, I listen to him summarise the (almost daily) ethical debates and dilemmas that the clinicians bring, often the things we are finding most challenging based on policy change or updated guidance and new evidence and he asks us: ‘if I was admitted to ward X what would I see, what would this mean for me?’ It brings the focus of our policy and practice right back to where it needs to be, the person’s experience. We are able to work together, from different perspectives to think through how that person and their needs fit with the wider health and social care system. In this process there is a clear balance of logical and creative thinking.

Where do nurses talk about this?

After discussing this idea for a blog with a friend we wondered about the confidence of colleagues to describe themselves as strategic thinkers, particularly early career nurses. Is there a need for this in the curriculum and in supervision or the coaching relationships that we develop?

Do we need to provide space for unpicking some of the things that we do that allows us to draw together the evidence base, understand the drivers and policy to see the bigger picture?

strategy_-thinking-journey_71554784

Many nurses have the capacity to do this without even realising that’s what we do. Being passionate, values based and person centred can be harnessed into being confident, pro-active, forward-focused and with the open mindedness for making evidence based decisions with insight and gut feeling.  Strategic thinking is essentially about knowing that a change or decision is not about what it means for you, it is about looking up and out and knowing there are far reaching consequences which meet the overall organisational drivers and position going forward.

In thinking about taking this forward how we might develop our ability to take a strategic view there are a few questions we can think about:

  • How well do you understand the situation, how safe does it feel or how confident are you to say that you don’t? Who can help you develop that knowledge and appreciate the broader context, interface issues and implications of decision making?

  • What are the issues and events that we choose to focus our energy on? Is this because we are concerned about the implications for self or for the service? How important are these things?

  • Most importantly are you taking a long-term perspective, do you recognise that the decisions you make today have consequences for the future?  Will this lead to the provision of better services for those who want and need them?

 

Tiredness, Tik Toks & Timing

same boat

The last few weeks have been an absolute whirlwind, a new language has replaced our everyday conversation: lockdown, social distancing, PPE, Covid 19, Coronavirus. 

Covid language

These words are everywhere and with them comes increased anxiety, confusion and as always the potential to exclude those people who do not have capacity to engage in the conversation.  People with learning disabilities can quickly be left behind, forgotten about and excluded. 

It started with the original messaging: don’t worry, it only affects the old and the vulnerable. As we know a society is judged on how it takes care of people in those groups. 

Next it was the poor quality information about what the public were expected to do to keep safe.  Key figures openly describing how they were going around shaking hands and suggesting that the virus was just like flu, which kills thousands in the UK every year (still, more likely to kill the old and vulnerable). 

The memes were flying around, poking fun at the guidance: stay home, unless you have to go out, then go out!  Once the restrictions came people immediately ascended to the hills and took picnics with them, flouting the guidance and increasing the risk to themselves and others.  In March  Public Health guidance said stay home if you think you have Covid19 but also later in the document that you could go for a walk once a day.

stay home, clear language

Imagine having a learning disability, imagine trying to make sense of this information, full of unknown language, abbreviations, conflicting advice and picking up on messages about how important your life is.   

Living in services & supported by staff, people with learning disabilities had the potential to become even more restricted than the general population due to the duty of care and obligation to follow public health and government guidelines.  This must have been very confusing for people who might have seen their neighbours behaving as usual or reports on the news of people who were not following advice while they were being told that they couldn’t go places, see their family and friends and that places were closed.    

When the NICE guidelines were rapidly developed the suggested tool for assessment of escalation of treatment was a frailty tool, the tool was not adjusted in any way to recognise the complexity of people with learning disabilities and there was huge anxiety that people with learning disabilities would not get the care and treatment they would need due to having a learning disability.  NICE responded, the Chief Nursing Officers made positions clear and families, advocacy groups, learning disability nurses and others working with people with learning disabilities have continued to challenge, lobby and work in partnership to continue to ask: ‘What about people with learning disabilities?’  



In dealing with these issues and in spite of not being physically close, I have felt more connected than ever to my colleagues and networks across Wales and the UK.  There are many examples of where we have worked together to problem solve, share information and raise issues that have evolved out of generic advice and guidance that has needed to be carefully interpreted and targeted for people with learning disabilities and their families.  


We know we are going through the first wave of dealing with this crisis in the UK, many questions are being asked about reporting and recording of cases and deaths in care homes, counting the impact on people with learning disabilities and their families and preparing for the potential spike that will come as restrictions start to ease and people start to move around again.  Preparing people with learning disabilities for more change is essential, we know many things will be different and this will need to be explained, explored and equality has to be maintained. Do you think we need a twitterchat @weldnurses?


It has been weeks since I have written a blog, something I usually really enjoy doing, often on a Sunday morning.  There  are three main reasons why I haven’t been able to:


1. Actual exhaustion (possibly a bit dramatic, I know!)


I have been worn out, the way that I have been used to working has changed completely, many of us are experiencing the same thing.  Previously I would have been driving around quite a bit, I wasn’t always happy about that, but now I recognise how the time and space alone, allowed me to think and was really important for me to prepare myself for conversations and to reflect on the things I’d learned throughout the day.  Now there is a whole new world of webinars, Covid 19 calls and urgent planning meetings, often back to back.


We are sitting at desks and computers much more than we have been used to, the volume of meetings we need to contribute to has increased and there are not the natural breaks in the day that allow for space and thinking time.  


It is right and necessary that much of what we do is very formal and to tight agendas, these are very serious times and decisions need to be made based on changing pictures and promptly relating to evidence based guidance.  


Using technology to call into meetings is essential, there are lots of intensities and pressures relating to this and it can be quite anxiety provoking.  I’ve talked to colleagues about how this feels, some have described feeling paranoid if missed off a meeting invite or hyper aware of their own body language, facial expressions and how they might be perceived, some people find it very difficult to look at themselves for such long periods of time.  




silence call


There is a difficulty sometimes in feeling the tone of the room often because it is straight down to business and rules around muting, asking questions etc. need to be maintained to keep to the important matters at hand.  


We are also using the same methods at home to keep in touch with and check in on our loved ones, in the Hopes/Thomas household we have on average three family quiz’s in a week as well as online choir practice and an appointment to catch up with friends on a Friday, my screen time is up and up!   


This article from Manyu Jiang (2020) explores many of the reasons that we might be feeling so tired at the moment.


2) My own well-being! 


Starting this blog on Sunday was the first day I opened the laptop outside of work hours.  I have consciously decided not to do any additional work and heed my own advice about managing the things within my control.


In the week leading up to the restrictions across the UK and as the advice on social distancing was being introduced I had a few personal struggles.  I live so far away from my family and friends, I started to worry about the possibility of not seeing some of them again.  I love my home town of Middlesbrough and would usually try to travel there from Carmarthen every couple of months.  My nephews were supposed to be visiting over Easter and like many other people I had a pretty full calendar for March and April which gradually started to be cancelled and those things to look forward to became less and less.


I was seeking out news as much as possible, anxious to be as informed as I could be and recognising the huge implications for our services and people who use them but this was not good for my mental health.  We know that people with learning disabilities often experience health inequalities in a fully functioning health system, there were many concerns raised about how people with learning disabilities would get fair and equal treatment during Covid:19.


There was some misinformation and some poor too much infodissemination of information that didn’t always feel right for our services and as the pressures stepped up to make sure that we had appropriate plans in place to meet the needs of people with learning disabilities it was important for me to keep some separation.


 


My social media use continued and one thing that I found useful was to set up the Covid:19 supporting people with learning disabilities facebook group my friend and former colleague Steph agreed to co-admin with me and we have seen the group grow, tried to keep it specific to providing good quality resources and information and we are really pleased to see the professional and family/carer mix in the group as well as some people with learning disabilities.


Wellbeing has been high on the agenda and I have tried to find ways to show my colleagues how much I valued the work they’ve been doing.  I’ve worked closely with the nurse leadership team to continue to promote compassionate leadership, fostering a culture based on connections, with honesty and integrity underpinning this.  Sometimes we’ve needed to respond to challenges that are borne out of anxiety and a strong desire to keep people safe, we’ve been able to respond to those things together, recognising that people are scared and that these are very challenging times all round.


3) The timing has to be right


We are dealing with such complex decision making minute by minute in services and so something that I write on a Sunday in preparation for the week ahead might be completely irrelevant, insensitive and open to being taken out of context by the time it is published.  We have wanted to capture good news stories, reflections of how our services are working together, adapting to ways of supporting people in our services during times of increased restrictions, government and public health guidance and pressures to meet the mental health and wellbeing needs of our staff as well as our service users and their families.


Capturing the good news is one thing, sharing it and being able to celebrate it is something else.  It is important to be thoughtful about how we can celebrate success stories of recovery or the delivery of wellbeing packs for our service users in a public way when the media is reporting on failures of delivery of personal protective equipment, the deaths of our beloved colleagues and friends and the increase in experiences of domestic violence in our communities.  These are very careful and challenging decisions if not done properly there is potential that these stories can increase tensions and shifts in public perception of nurses, the health service and people with learning disabilities.


It is important to be sensitive to this and know that there is scrutiny, challenge and a need to role model good behaviour and leadership.


The TikToks and videos of hospital staff doing choreographed dance routines have been seen in two lights:


1)      Motivating, good for morale, team work and releasing tensions


2)      Unprofessional, wasteful (time, PPE and equipment), insensitive and misjudged


Some people in the media and the profession have been very clear about their views on this behaviour and it’s quite difficult to see this played out.  A 30 second snapshot of somebody dancing cannot possibly give any insight into the thoughts, feelings and pressures that the person is facing.  Equally when shared at the wrong time the challenge about Drs and nurses laughing, wasting time and PPE when people are dying and the public are being told that the NHS is on it’s knees can be difficult to defend.


However, in all honesty, as I watched a video recently where an Italian Dr filmed himself in a packed ITU, a Dr who hadn’t left the hospital in days, who was utterly exhausted and fearful about how much more the system could take I reflected that I’d rather see any number of videos of our Dr’s, nurses and colleagues in health and social care doing dance routines, spreading joy, silliness and humour in a time where days are tough, pressures are felt, but so many of us still get the chance to start again tomorrow.


With that in mind, thanks to everyone who was brave enough to contribute to this after the disappointment for so many of us that positive choices was cancelled this year.

	


	



			
				


			

			
Being in the moment & leaving the laptop alone!
		
	
	

		
 


It’s been a couple of weeks since the last blog, this has been for a few reasons. Three weeks ago I went on a leadership programme: Bridges, this took place over four days and we were actively encouraged not to bring devices into the room or use our mobile phones. I struggled with this at first because I was going on holiday the day after the programme finished and I was worried that I would be away from work for almost two weeks and had planned that in break times/lunchtime I would be checking in online, replying to e-mails and generally managing my day to day work as well as learning about my own leadership style, engaging with the programme, getting to know the other delegate’s and immersing myself in the learning.


And that’s the thing, how could I ‘immerse myself in learning,’ connect with others and develop relationships if at every break in the programme I was going to ‘check in on my e-mails’ and update my blog?


So, as difficult as I found it I made an extra effort to not do both. Hence, no blog. I left my i-pad and laptop at home, kept my phone on silent and barely checked my phone or sent a tweet, it was easier than I expected.


I did spend the Friday evening before our holiday in Tenerife checking up on e-mail and doing a specific piece of work which was very important to me and probably more important for other people. I nominated a number of colleagues for the @SwanseaBayNhs #LOVawards, I knew I would miss the deadline if I didn’t because I was going to be on holiday and so I gave myself a couple of hours to make sure that I put forward some of the amazing people I work with forward for those awards.


 


Recognising and celebrating each other is so important, we face challenges every day in our practice and moments to celebrate mean the world to people. We send out postcards to colleagues as often as we can to recognise some of the fantastic work we see and hear about, sometimes this is because we’ve seen something on social media, or it’s an interaction we have had, an e-mail we’ve received from a service user or carer or another colleague has been in touch and told us about a good piece of work happening in our delivery unit. We feel as a senior leadership team that this is one demonstration of how we live our values and when an e-mail or a tweet comes back to say thank you we are equally as please that the person values what we’ve done.


While I was at work last week a colleague told me that they’ve loved reading my blog and they love even more that they have seen some student nurses creating their own, that’s exactly what I had hoped to happen and I am over the moon that there are student nurses now sharing their stories, inspiring a future generation of students and educating their friends, families and a wider audience about what learning disability nursing is.  One of my all time favourite sayings: Nurses inspire Nurses.


 


On Friday I shared one of the nominations I made for the LOV awards with the people nominated and I had the most fantastic reply, ‘Thank you ever so much. What you have written is as good as winning any award! It really touched us’. I am really holding out hope that they win.


On this theme of celebrating, today is International Women’s day, I’ve been reflecting throughout the day on some of the women who have helped me become the person I am today, I am grateful to friends and family, mentors and colleagues who give me advice, support, motivation and inspire me everyday. I make an effort where I can to let them know.


This weekend I continued with my laptop/I-pad amnesty (until now!), going to a caravan in West Wales for a weekend away with a friend. We did very little, I finished a book, had a facial, a walk around Tenby, brunch, a couple of glasses of prosecco and a good chat. It was lush! I feel relaxed, refreshed and ready for the week ahead: long may it continue!


 


 


 

	


	



			
				


			

			
Career progression, connections, conversations & challenge
		
	
	

		
career goal


The learning disability nurse consultant post in Swansea Bay University Health Board is the only LDNC post in Wales.  There was much discussion and interest when the last post holder (Chris Griffiths) was preparing to retire and because the learning disability nursing world is well connected and compact lots of conversations were happening about who might be appointed next.


Nurse consultants: leaders in the profession


I had become interested in the role when I first started teaching and was keen to inspire in students the professional routes and career opportunities available to them.  Finding out about the possibility of combining academic and clinical practice and being able to retain teaching, research opportunities as well as working with people with learning disabilities was really exciting and I was keen to know who nurse consultants were, I had never worked with any in practice.  


When reading around Strengthening the commitment there was a strong focus on leadership and nurse consultants were identified as key leaders in the profession.  I wanted to know who those leaders were and how the work they did related to my role and practice.  I started to look for nurse consultants in public domains, finding out about the network and who was active on social media.  I saw names of researchers, speakers at events, people who had published articles and books and influenced in other ways such as being part of @weLDnurses or representing in the LD Professional Senate.   


UKLDCNN


There are some nurse consultants who practice independently, undertaking specialist clinical work, teaching, lecturing and advising on key issues for people with learning disabilities and their families.  Some nurse consultants have been heavily involved in the development of standards that guide our practice and have developed tools that are used to increase the evidence base for learning disability nursing and improve outcomes for people with learning disabilities including The Health Equalities Framework (2013) Dave Atkinson, Gwen Moulster in partnership with colleagues who do (or did) work in the NHS: Crispin Hebron and Phil Boulter.


Now I am a nurse consultant 


So, 17 years after starting out on my journey to becoming a learning disability nurse, I started to become a learning disability nurse consultant.  There’s a lot of fantastic work going on in the network and as I touched on a couple of weeks ago it can be strange at times to think, here I am part of this group of inspirational leaders who are working so hard to continue to progress the agenda for rights, equality, access and inclusion of people with learning disabilities in practice every day.


Philip and Paula


I have named many people over recent weeks in this blog who I have learned from, been encouraged by and supported my development, there are so many more to mention, including people with learning disabilities and their families who have taught me life long lessons.  I was given many opportunities along the way to develop personally and professionally.  The leaders who I have encountered on my progression instilled in me skills that equip me for the challenges of the role and the ability to see the bigger picture, that change is happening all the time and we have to find ways to move with that for the benefit of the people we work with.  


accessible PBS


Doing the M.Sc in positive approaches to challenging behaviour and then the PGC in learning and teaching in higher education were two essential tools that I think allowed me to really create a vision of where I wanted to be and what I needed to do to get there.  Anyone reading this blog will see that I continue to learn everyday and I’m keen that others are given the time and space to learn too.


Recently I’ve had a couple of conversations with learning disability nurses about their potential development and career opportunities for them, I am keen that links are made with local nurse consultants, to raise awareness of the role and the value of what we do and continue to raise the profile of learning disability nursing and people with learning disabilities.  One of the key questions I was asked last week was who my managers had been and who had helped me identify my potential, supporting and guiding me along my journey.  


Hons


My current manager Hazel Powell has inspired and supported my development in this role over the last 18 months, with a really clear vision of what a nurse consultant does and does not do.  I have benefitted greatly from her guidance, coaching and challenge in a way that has been positive, confidence building and affirming.  I’m going to miss Hazel very much when she moves into her new role in Welsh Government and I know that the rest of our team will be sad to see her go. I hope that there are nurses reading this who are thinking about how they can find and provide those support networks to help their teams get to where they want to be.


The value of feedback


I heard some lovely pieces of feedback about this blog this week- one was from a former colleague who told me that a student nurse had been inspired to write their own blog after reading mine.  It’s an incredible story from Victoria about her personal journey and what inspired her to do learning disability nursing.  The other feedback was music to my ears, a colleague told me she had read my blog and as she read it she knew ‘this is exactly who you are’. I wanted to write a blog that people wanted to read, that was authentic and touched colleagues and friends but would also reach out to other people who may want to know about learning disability nursing as a career.  To think someone reading it feels that what I am writing fits with who they think I am is very important to me and I was really grateful to hear that.  Thanks to everyone who has taken the time to tell me what they think of these blogs, it’s very much appreciated.


Having ambition in nursing- you don’t want to be a proper nurse then?


This morning I read this tweet from a third year student nurse with an openness about his ambition to one day be a professor in nursing.  Wow, to know exactly what you want for your career so early in your journey, that’s inspiring.  Yet, this person has described cynicism and negativity about his ambition and has been hit with the ultimate nursing insult ‘so, you don’t want to be a proper nurse then?’


student nurse prof


Thankfully there are many supportive, helpful, inspiring nurses and academics offering thoughts on the opportunities that this person can take to help on his journey to achieve his goal.


Any learning disability nursing colleagues or student nurses reading this now may be bubbling up inside, ‘not a proper nurse?’ is something we are so familiar with hearing in our field of practice.  We’ve done a lot to combat this with reinforcing what we do differently and additionally in the field of nursing, we remind others that we are registered nurses, that we are taught in the same way as other nurses, on a degree level programme with 50% theory and 50% practice.  


We know as learning disability nurses we might not fit the public perception and media portrayal of nursing but we all know that there are many others that may not fit this stereotype either:


·         People from BAME backgrounds


·         Men


·         People with tattoos, piercings, coloured hair


·         People with disabilities


·         Those with their own mental health needs


There is lots of work ongoing about raising the profile of nursing and Ruth May, CNO in England has shared images on social media to promote the role of men in nursing.  In Wales we are moving forward with Nursing Now.  One of the aims of the Nursing Now campaign is to promote greater diversity within our nursing and midwifery workforce.   This will challenge stereotypes about who can be a nurse/midwife and the types of work they do.  If anyone reading this thinks they would like to challenge some of the stereotypes, tell their story and break down barriers please get in touch.


Maybe we need more challenge internally about what nursing is and what opportunities there are within the profession too.  As nurses there is much variety in what we see as nursing and in the Year of the nurse and Midwife we can take opportunities to explore that.yonm


 

	


	



			
				


			

			
And then I moved to Wales…..
		
	
	

		
welsh flag


 


 I started to think about moving to Wales a little while after I met my Fiancé Ant, we had enjoyed a long distance relationship for a little while when he introduced me to a family friend and learning disability nurse, Tracey Lloyd.  Tracey was a Macmillan nurse for people with learning disabilities, not actively delivering care but working in a strategic way across Wales on a project looking at increasing awareness of people with learning disabilities and their families, carers etc. about cancer, working with groups of people with learning disabilities to ‘check for change’ and using research from Irene Tuffrey-Wijine on breaking bad news.  There was a huge focus on the involvement of people with learning disabilities in discussions and decisions about their needs in relation to this.


Tracey was really kind and helpful when I was looking to make links in Wales, she included me in some of the events she was running, we met up at Chester Uni where she was giving a talk about the fantastic work she had done and I literally bumped into her at a Strengthening The Commitment event in Derby.  I was attending on my own and did not think I would know anyone.  The first person I saw was Tracey, she took me over to meet her colleagues and friends who I sat with for the day, a very friendly bunch (Laura Andrews) and colleagues who I see quite often these days.  Tracey introduced me to lots of people including Prof. Ruth Northway, Neil James and Victoria Jones who were all working at the University of South Wales (USW) at that time.  It felt a little nerve wracking meeting some of these people, people whose work I had read and referenced in some of my own academic work.  Many of the people at the event in Derby were very well known in the learning disability field (unlike me) and the passion and energy in the room was fantastic.


Friends-Together-1_medium


It was a great day, I met lots of people and heard amazing and inspirational speakers talking about the commitment to the learning disability nursing profession, I met Joanna Grace with her beautiful, creative sensory cave, showing how people with profound and multiple learning disabilities can be engaged, heard and valued through connections on a sensory perspective.  I also met some of the LDNurse.com team, a lovely bunch who I really enjoy catching up with whenever there’s a chance and work so hard in their own time to keep the promotion of the profession alive. 


Hearing about Down side up


I also heard Hayley Newman speak.  Hayley was talking through her emotional journey as Natty’s mum and speaking so passionately about the value of learning disability nurses she had met and been supported by. She asked the audience how we could combat some of the negative perceptions of having a child with Down Syndrome and the messages that prospective parents receive when there is a ‘risk’ of having a child with Down Syndrome, a question still as relevant almost 5 years later.  It was an emotional, powerful, heart wrenching talk, you could have heard a pin drop and it certainly left a lasting impression.


networking


Looking back, going to this event was one huge networking opportunity!  I was able to meet people that day that have helped me in my career, probably without really knowing that they did.  At this event I had an informal opportunity to talk to people and start saying I want to come and work in Wales.  I made arrangements after this to go and visit USW and introduce myself to the team there and when an opportunity came up I applied.  I moved to Wales in November 2016 and although I had experience as a Senior Lecturer it took me a little while to get my head around working in another university.  It took a little bit of time to settle in and work out some of the systems, developing a relationship with my new personal tutor group and finding links in practice.  Some of the people I met in Derby really helped smooth that transition for me, helping me settle into my new home and role.  I also really valued the leadership of Nicky Genders, Head of School at USW who is creative, passionate and inclusive in how she works on the developments in the school from multiple perspectives.  I’ve learned valuable lessons in leadership from working with Nicky.


Nurses Inspire nurses


Sometimes we may not be comfortable in putting ourselves forward, perhaps we don’t feel that we have much to offer and that there are others who are better placed to speak up, represent or share ideas, but in reality, there is a real appetite from hearing from the profession at all levels and as a group learning disability nurses are generally very supportive, encouraging and willing to champion each other.  I often hear students or newly qualified nurses being described in very positive ways, we’ve got our eye on them and we are keen to see how they will develop and where they will go.  I am incredibly proud of the students who I have taught when I see them sharing their good practice, their innovations, speaking up in meetings and forums, putting in posters and presentations to conferences etc.  Also the mentors who have invested their time and patience in giving a quality learning experience to the student nurses teaching skills that cannot be assessed in the classroom, but have to be practiced and reflected on in real time.    


I can give many examples of nurses and other colleagues who have supported me and given me helpful feedback and challenge when needed about the way I work and the things I am doing, supervision and reflection are key tools in personal and professional development, also humility and warmth.  These qualities and skills can take you places.


 career goal


Thinking about where you want to be in your career and setting some personal goals helps you identify the steps that you need to take to get where you want to be.  This might mean that you have to put yourself into zones of discomfort, you might have to submit a poster to a conference or be a bit more active on social media. You may have to walk up to one of your career idols and introduce yourself!  Maybe you can start taking opportunities to present on the work you do or attend a committee, represent in a forum or meeting or volunteer for something that you may not feel fully equipped for.  


IMG_2023


For anyone reading this, in the year of the Nurse and Midwife, who is thinking about their own career goals and aspirations it is essential that you find that mentor or supervisor who you can connect with and who you feel comfortable enough to say how you truly feel about something, establishing trust and safety but never an echo chamber.  Finding somebody who will invest time in supporting you, is essential.  This person will be invaluable in helping you shape up what you want to say or just hear you say that you don’t feel confident about something and you want to practice.  This gives permission for them to point out weak areas or potential for improvement without feeling a personal challenge or criticism.  We have to be comfortable with our own vulnerability to be able to grow- this is not news! see anything by Brenee Brown.


 


 

	


	



			
				


			

			
Knowing me, knowing you: developing a network
		
	
	

		
knowing me knowing you


I was going to use an image of ABBA to complement the title of todays blog but who doesn’t love the cheesy awkwardness of Alan Partridge? The shameless self-promotion and capitalising on opportunities that come his way, despite his lack of skill, integrity and capability. 


A-ha! 


 


When I first started teaching a colleague told me it would take a couple of years before I really felt like I knew what I was doing.              


 A couple of years!                  They were not wrong!


At that time the University had two intakes of learning disability student nurses which meant running the curriculum twice a year.  There was a lot to learn as a new academic, interviewing and recruiting to the programme, inducting and supporting new students and continuing the links with practice as well as designing and delivering teaching, assessment, marking and preparing feedback (which I’m not convinced is always valued as much by the student as it should be) attending board, mitigating circumstances panel and learning and development committee amongst other things.  At the same time, I was studying for the PGC, learning how to facilitate learning and finding ways of engaging in research.  


I linked into and learned about a couple of things that helped me feel I was connecting with others, contributing to the wider profession and maintaining clinical currency.  I was working in a small team with colleagues who had been known to me all of my professional life, Marie, Karen and Dave had taught me when I trained at Teesside and Rob and Pam had been colleagues, managers and senior leaders in the children’s learning disability service I’d had placements and then worked in.   


tripartiteAs a team we maintained strong links with practice, with regular tripartite meetings. At the beginning and end of every placement period (and sometimes in the middle) the student, practice mentor and academic mentor would meet, where the terms of the placement were set, the learning contract was agreed and at the end reviewed, learning assessed against outcomes and competencies signed off, or not.


I have experienced these meetings in all three roles. I think as an academic it helped in maintain a clinical presence, understanding developments in practice and the challenges faced by colleagues who worked hard to support a meaningful placement experience and deliver quality learning opportunities to the students while also delivering care and managing the responsibilities of their daily role.  It also felt supportive as I was learning to be an academic I still felt the support and presence of clinical practice, linking regualarly back to the areas I had worked in.


Becoming part of LIDNAN (The Learning Disability Nursing Academic Network) was really helpful in understanding what was happening across all universities with nursing programmes and how other learning disability academics were addressing the issues relating to recruitment, opportunities for other fields of practice to know about meeting the needs of people with learning disabilities and to keep up to date with national programmes such as Strengthening The Commitment (2012) and events like Positive Choices.     If you don’t know about these things they are a good place to feel the power and nurturing of learning disability nursing as a profession.


LDelf


At this time I started to blog for learning disability elf writing reviews of research in under 1,000 words to help disseminate new ideas and make research more accessible to a wider audience, providing a ‘coffee break read’.   I really enjoyed doing this, the research was allocated based on the reviewers interests, mine being: death and dying, challenging behaviour, nurse education among other things.  Online supervision was provided to sense check and ensure that the key themes were easily translated and understood.  I used the experience of blogging in teaching to support students to see the value in being succinct and the skills needed to be critically analytical.  The way the website is set up it allows you to look at the critique and then the original article and this is a helpful resource for students to learn the value of these skills.  Also the messgae that these are skills for life and that there are different routes into publishing and delivering research or scholarly activity.


I also began to use social media in a more professional way and develop an online profile, networking with colleagues from a wide range of areas and linking with some of the key leaders in our profession, other nurses, nurse academics, student nurses and self-advocacy groups, parents, carers and people with learning disabilities.  It took me a while to get confident with social media, I wasn’t always comfortable with posting on face book which I saw as a more personal space and I didn’t really understand how to use twitter!   When I discovered we learning disability nurses (@weldnurses) I saw the power of coming together in a network and sharing ideas, celebrating success and disseminating research in an interactive way.  I learned how to use twitter as a resource, how to develop and nurture relationships, connect others and network with others.   I hosted my first twitter chat on 4th October 2016, working with the whole person: behaviours that challenge.  It was a fantastic experience (good for CPD & revalidation) and I enjoyed pulling together the summary afterwards which helped me draw out themes and areas for further learning.  


I’ve gone on to host other chats and co-hosted with a former student nurse @lauldn4 after we went to Cambodia together and talked about the value of international placements for learning disability nursing students and with a speech and language colleague Helen Cunliffe @helenglais sharing ideas on the importance of accessible communication.  It was great to support Liz Fair, Community lead nurse host a chat recently on palliative care a great way for her to disseminate findings from her M.Sc. and encourage a conversation about the role of a learning disability nurse working to ensure best practice for people with learning disabilities.


These are all examples of activities that have contributed to my personal and professional development. I’ve developed a network of online and off line colleagues, champions and ‘check-ins’ that keep me connected with various elements of practice and research, helping me bounce thoughts around, share ideas about the things that are important in our profession and to the people who use our services.  I’ve learned lots, connected with my learning disability nursing heroes and many opportunities have come my way because I have been active in these forums.


Everyone’s journey to achieving their ambition will be different, my aspirations for the future will need a different level of engagement, in wider platforms and with evidence of leadership, research and practice developments. There will need to be a focus on impact and measurable outcomes.  This will take time and investment in my own professional development, the mentoring, coaching and leadership I receive will hopefully support me in working towards those goals.  Equally, I see my role as very important in furthering the opportunities, potential and aspirations of others.  


Thanks for the Feedback on the blog so far


It’s been really good to hear feedback about how this blog is being received, lots of people have shared thoughts about the concept of imposter syndrome and the impact this has on them in practice.  I was really happy to have contact from former students and a colleague who told me that student nurses are talking about the blog and it’s having influence in practice.  I hope that giving an outline of some of the activities I have undertaken in steps to becoming a nurse consultant is going to encourage other learning disability nurses to engage in a way that suits their role and meets their needs to be visible, vocal and valued as a professional who is leading the way in their way, with the work they do.

	


	



			
				


			

			
From expert to novice: experiencing imposter syndrome
		
	
	

		
Me7_600x600


I first heard the term ‘imposter syndrome’ when I read a blog from a former colleague at Teesside University and I felt it perfectly described what I was experiencing, I thought that she was so brave for acknowledging and voicing out loud these feelings.  She had given me the words to describe the underlying, niggling feeling that I was going to be found out! That I’d been given the Senior lecturer post on a pre-reg learning disability nursing programme and soon ‘they’ were going to realise that ‘they’d’ made a mistake!


Imposter syndrome was first described by Clance and Imes (1978) ‘an internal experience of intellectual phoniness’. Research of the time talked about the experience of high-achieving women but over time there is evidence that this is a phenomena experienced by men and women in equal measures.


Dalla-Camina (2018), identifies some key characteristics of this:


    

  • A tendency towards perfectionism
    • 

  • A failure of fear
    • 

  • Continually undermining your own achievements
    • 



That’s me!


The feelings can manifest in different ways, so for example as a lecturer in the early days speaking in front of a group of students (like, doing my job….teaching) was comfortable and enjoyable for me, but when I was in the middle of the PGC and needed to develop a micro-teaching session to my peers, the feeling of exposure at the thought of doing something wrong or embarrassing in front of my peers was completely overwhelming, terrifying even!


So why am I talking about this?


In my last blog I was describing being in a clinical nurse specialist role, I was really happy in that role and had developed my skills as a ‘behaviour specialist’ working for nine years in a supportive, nurturing environment with a highly skilled team who carried out functional analysis to a high standard, in a person centred and values based way and made a difference to the quality of life of children with challenging behaviour and their families. I was confident in my capabilities and on the whole loved my job.


I was an expert in our service. I had an M.Sc. in Positive approaches to challenging behaviour, I had developed personal confidence through NLP and reflective practice and embraced opportunities as they came along. I was sensory integration trained among other things and was very competent in my practice, able to hold my own and lead in challenging situations.


Then I applied for a Senior Lecturer post at Teesside University (after someone said ‘you’d be good at that!). I hadn’t ever thought about lecturing, the lecturers who had taught me were held in such high esteem by students and mentors from Teesside and I could not compare myself in any way to them, but at the time my life was upside down and I felt ready for a change, so I applied. And……… I didn’t get the job! But after preparing for the interview, developing a presentation and reading all around the curriculum, research on pedagogy and getting a buzz from the learning, I wanted that job!


A couple of months later I was offered the Senior Lecturer post. This was where the imposter syndrome started. I went from identifying as an expert, someone who was valued and recognised for their knowledge and experience of working with children and young people with behaviour described as challenging, supervising and supporting the development of others and feeling really good about the job I did to not having a clue what I was doing! I became a novice. The university spoke a different language to practice, the systems were difficult to navigate, I was teaching things that I had learned about in my pre-reg programme and was not confident in delivering this knowledge to others!


I was not teaching the human needs exercise, the assault cycle, why we don’t use punishment, reinforcement processes and ecological manipulations which had been core staples of the person centred workshops I had regularly delivered in practice.  I was teaching human growth and development: the respiratory system, the musculoskeletal system, drug calculations and the deteriorating patient, which funnily enough, was not!


This was an unnerving period for me and the role transition took time, development of skill and confidence, I worked alongside other lecturers from all fields of practice to learn techniques and approaches to help me increase my competence in teaching others and I completed the PGC, alongside other new to teaching clinicians, who in the main, felt exactly the same as I did.


The idea that we are not good enough, clever enough, capable enough can be so limiting and restrictive to our own practice and personal development.  We may not put ourseves forward for new opportunities, might not step up to a challenge or expose ourselves to situations that we feel reinforce to others that , really, I’m not good enough for this.  One of my favourite sayings below illustrates this, we may be safe where we are but that doesn’t mean we should stay there.


ship in the harbour


The journey to nurse consultant continues.


 


Dalla-Carmina, M. (2018). The Reality of Imposter Syndrome. Psychology Today