Reflections of a carer

So here I am at 5 am, a regular time for me these days to be awake, contemplating the mountain of priorities I have ahead of me for the day. In the many conversations I’ve had with colleagues, members of the public, policy makers, researchers , practitioners and academics in my role as Director of a national research centre, I’ve come to realise how important it is to share our collective stories about our lives to learn from and empower others. So here is mine. I do hope it’s not a ramble!  Its purpose is to raise awareness of the importance of living in a compassionate world where we treat each other with due consideration, care and kindness.

In a world that is consumed with a preoccupation for either celebrity or performance management, there often seems little room for compassion for others. Society is quick to judge what it doesn’t understand if it can’t be boxed, measured and contained. IMPACT doesn’t count if it’s not a number.  Career politicians lack the insight into the grass roots experiences of their community constituents.  Yet for those people in society trying to balance the reality of multiple identities ( worker, mother/father, carer etc), the reality of trying to balance complex and often competing roles can be a struggle.  On the surface we may appear calm, controlled, driven, but underneath we may be peddling furiously to stay afloat. In reality many businesses, companies and organisations miss these important human signs, especially if they have a policy that covers it off and a box can be ticked that says ” yes we support people in caring roles”.

So what about me?

I am 51 years of age, leading a really important national centre for applied research that I’m really passionate about as it focuses on making a difference to the lives and experiences of practitioners and the public receiving care and treatment across health and social care sectors. I have had the privilege of working in many countries over the years as a nurse, and practitioner researcher and my innovative and entrepreneurial spirit drives me to make a difference in life with and for others.

I became a carer four years ago when my mother, now 77, was diagnosed with mixed dementia. She has been living independently but as time has gone she has needed more support at home. For four years I’ve managed her care long distance from my home in Kent travelling 250 miles to see her every month and calling her every day without fail.  This has required complex planning with a wide range of health and social care support services and I often wonder how the public copes with navigating a system that puts up barriers that disempower rather than enable families and carers to cope.

A couple of weeks ago mum came to live in my home having decided that she wanted to be with me and my brother. She made the decision over a year ago when my brother was left fully paralysed after a back operation left him with an infected spinal abscess which compressed his spinal cord.

Last July I was stationed in Aberdeen at his bedside in intensive care for 8 weeks waiting for him to pull through.  I took over managing his affairs and whilst running my office out of his home, had to set about selling his home, car, move his possessions into storage, manage his financial affairs and coordinate his long term care. It’s been a tumultuous 12 months but he pulled through and I managed to get him repatriated to the  NHS in England ( he has no wife or dependents) and he’s been in the care of the amazing team at Stoke Mandeville National Spinal Injuries Unit ever since. So I’ve been haring up and down the glorious M25 motorway for the past 7 months but it beats flying to Aberdeen to see him. As his power of attorney I have continued to support him with decisions and participate in his care, treatment and goal planning and we speak everyday without fail. I am so very proud of him. Soon he will be moving to a step down rehab service near to me and my mum and once fully discharged will be able to see us regularly under his own steam. I’ve been managing a complex investigation into what happened clinically and why it happened in the background.

Two weeks ago I took three days off work to manage two mammoth house moves for my mum and myself in a hectic work schedule. I’ve done it many times over but this time it’s different as I’m grieving the loss of my mother’s life in a way. I’ve put my heart and soul into finding a new home for her that will ignite her interests in all the things she loves and am renovating part of my home to ensure she is safe, comfortable and it’s a home from home for her. In doing all of this I sold my forever home in order to support her.  Typically the builders haven’t finished yet ! In the midst of all this my remaining sibling who lives on the other side of the world and visits once a year for a week, hasn’t rung to ask how any of us are doing. I find that the hardest thing to cope with out of everything else.

So what’s the point of sharing all this with you?

It’s so important that we look out for others in our local communities and be attuned to giving something back to people who may be lonely or alone . Remember you can be in a room of family and friends and still be alone.  You don’t have to give to receive but give because you genuinely want to help others.  It’s important to stop judging each other and be attuned to the stigma and labels we consciously or subconsciously give to people and how this creates biased behaviours. I notice this a lot in my life when out with my mum and brother.  People stare or give you a wide berth, pity you or simply don’t care or cater for your needs. We’re determined for example to name and shame every business in our home county that has poor facilities for disabled people in a new Facebook campaign coming soon!

Over the past year I’ve learned a lot about my own inner resilience but also about others both in my family and in my local community and workplace. Workplace support is so crucial but often absent, family support is vital but often lacking, community support is essential but often cuts in council spending have wiped out any hope of access. Looking out for other carers and understanding the importance of having access to support networks is essential. More and more young people are finding themselves in carer roles as cuts to funding affect support for loved ones living with physical or psychological challenges.

So what are the three take away messages I want to share with you?

1. Be genuinely attuned to the responsibilities that your friends and work colleagues hold in their lives and treat them with dignity, respect and compassion.

2. Ensure that workplaces genuinely offer flexible and adaptable working policies that cater for individual needs with good access to support services when needed.

3. Be authentic in your actions and look for opportunities to give something back to help others in need, it may only be a cup of coffee and a listening ear that’s required.

Finally as I am finishing this my mother in law has been taken very unwell so a fresh set of circumstances and challenges are layering themselves on top of my already complex life. Still I’m up in 15 minutes to ready myself for a full work schedule today hoping that my Duracell batteries can propel my inner innovation steam room for another day.

My thoughts go to all my fellow carers out there and I am mindful that there are many dealing with equally complex issues often more isolated than myself. So look around you today wherever you are and reflect on how you might help support others, if only for a few minutes.

Posted in Uncategorized | Leave a comment

A tribute to nurses everywhere: Celebrating International Nurses Day 12th may 2016

England Centre for Practice Development

I am so proud to be a nurse.  Whilst I am privileged to work with a great team of researchers, practice developers and innovators running an interdisciplinary national centre for practice development and innovation,  I wanted to take the opportunity to post a brief blog celebrating my colleagues and peers.  Here are two stories by wonderful nurse leaders Paul Jebb and Joan La Pons, both International Fellows of the England Centre for Practice Development.  To read more about them, their work and their passion for practice visit http://www.canterbury.ac.uk/ecpd and read their profiles under the International Fellows section of our website.  There will be many more in the coming weeks.

Paul Jebb Experience of Care Professional Lead
Patient Experience Team,  NHS England, @Pauljebb1

” As I am just about to clock up 20 years as a registered nurse, it is always good to reflect on what being a registered nurse really means…

View original post 934 more words

Posted in Uncategorized | Leave a comment

A tribute to nurses everywhere: Celebrating International Nurses Day 12th may 2016

I am so proud to be a nurse.  Whilst I am privileged to work with a great team of researchers, practice developers and innovators running an interdisciplinary national centre for practice development and innovation,  I wanted to take the opportunity to post a brief blog celebrating my colleagues and peers.  Here are two stories by wonderful nurse leaders Paul Jebb and Joan La Pons, both International Fellows of the England Centre for Practice Development.  To read more about them, their work and their passion for practice visit http://www.canterbury.ac.uk/ecpd and read their profiles under the International Fellows section of our website.  There will be many more in the coming weeks.

Paul Jebb Experience of Care Professional Lead
Patient Experience Team,  NHS England, @Pauljebb1

” As I am just about to clock up 20 years as a registered nurse, it is always good to reflect on what being a registered nurse really means to me.

Nurturing others to develop and give them the skills and confidence to meet the changing health care needs of those they come into contact with
Use skills & knowledge to make a difference to those I have come into contact with
Respect each other for what we are and championed diversity and inclusivity
Support, mentor, coach and inspire others
Enhance care for people, their families and carers

There are many words that we could use to describe what we do as Registered Nurses, as well as working alongside health care support workers and other members of the multi-disciplinary team, but more importantly than words are the values we live and the actions we do that make a difference to the lives of those who need to receive nursing care. Our actions will reflect our values, the skills and knowledge we have and the professionalism of the nurse and other health care professionals.
Registered nurses make a difference to individual people but also have an impact on the outcomes of health, we as a profession need to understand and value our roles, have pride in our education and intellect and the skills that make a difference to those in receipt of nursing care. Health care is challenging but registered nurses have the skills, knowledge and expertise to continue to make a difference.”

Joan Pons LaPlana Telehealth Flo Clinical Lead at Arden & GEM CSU,  @thebestjoan

Kindness can be as powerful as 1000 aspirins

 

“To be honest I became a nurse “by mistake”. When I was growing up I never thought that I will ended up being a Nurse. It was more that Nursing chose me. After gaining my Nursing Diploma, I undertook a degree in Management of the Critical Care Patient and then worked in various very busy A&E’s around Barcelona. Work was intermittent, so I decided to pursue my career in England. I landed in Sheffield on Bonfire night in 2000 and I was quite impressed by the reception and all the fireworks illuminating the sky!

Initially I worked in the intensive therapy unit (ITU), where the ventilators, pumps and gadgets played to my interests. However, my primary focus was performing tasks and technology; I became very ‘Competent’ but Care, Compassion, Communication, Courage and Commitment were not my priority.

All that changed one weekend when I was allocated to take care of a young lad who had been in a car accident. He was being nursed in a cubicle; his body was battered red, with multiple fractures. He was ventilated and had various drains and pumps in situ. At the time, he was the ideal patient for me as my nurse vision was primarily performing tasks. But towards the end of the shift he asked me what was outside the little window at the end of the cubicle. The following day he again asked me what I could see from the window, and if I could move his bed close to it. Initially I thought he was joking, but he was dead serious. I told him it would be physically impossible.

That night I went home and I couldn’t stop thinking about his request. The next day I asked to nurse him again, and I asked him if he wanted to see the view. I still remember his face; it lit up with a big smile from ear to ear. It took me nearly two hours to manoeuvre all the equipment safely around the room, but I was determined! We finally made it, and like a miracle, a ray of sunshine came through the window and illuminated his face. He asked me to sit on his bed next to him, and for the next half an hour we were sat in silence holding hands. It was a powerful moment and we both ended up with tears rolling down our cheeks.

For the first time I understood what Care and Compassion meant. On that day I fell in love with nursing; my job became my passion. I still remember that immense feeling inside me that on that day – I made a difference to somebody. For the first time I was proud of being a nurse. Also to everyone’s astonishment patients started to recover very quickly and left our unit a week after. From the experience I learned to never underestimate the power of Compassion. Often Kindness can be as powerful as 1000 aspirins.

Since then patient centred care has been my passion. I firmly believe that by putting power into the hands of the patient, the NHS will be able to improve the care it provides and save money while doing so. Often, the patients know the solutions because they know the problems.

We live in a time that our NHS is under great pressure and demand is soaring. Only if we truly turn our health system upside down by empowering patients and frontline staff, the NHS will be able to survive and deliver the gold standard care that everyone of us dreams of.

To be able to make a difference to someone is priceless. It’s like a euphoria feeling that lifts your spirit and gives you tremendous amounts of energy and happiness.

When I was younger growing up in Barcelona I never imagined I would ended up being a Nurse but I do believe it was meant to happen. Often I think I am the luckiest person in the world.

Not everyone can say that they make people’s lives better for a living. I go to work with a smile every morning, which is priceless for me.”

 

 

Posted in Uncategorized | 1 Comment

#WHIS16 #CUMBRIA – “Together, We inspire”

The World Health Innovation Summit launched on the 10th March 2016 at the Halston Hotel, Carlisle, Cumbria. It was a unique forum developed by Gareth Presch, CEO of a Cumbria based community interest company that brings patients, clinicians, managers, education, voluntary sector and the business community together so we can support and improve health services.

The summit concept aims to bring communities together to innovate and share knowledge to improve health care around the world in a global social movement by providing a platform for us to share knowledge for everyone’s benefit. The first summit invited a range of expert patient innovators, clinical leaders, health commentators, academics and members of the business community to share their innovative work. Speakers shared their experiences, stories and ideas – and the energy in the room created from the information-sharing and need for improvement and inspiration was profound and electric.  Carrie Jackson, Director of the  Centre for Practice Development, presented a keynote session on the work of the Centre showcasing examples of collaborative programmes of work that have impacted on workplace and organizational culture, redesign of health care services, innovating the health workforce for the future beyond 2030 and the importance of creative approaches to health and well being to enable the invisible issues and hard to reach community groups to be included and valued.  She emphasized the importance of connecting hearts and minds, ensuring the innovation is community driven and community led to meet the needs of the public both now and in the future.

Find out about the inspiring World Health Innovation Summit CIC (WHIS) 2016

“TOGETHER, WE INSPIRE”
Supporting our communities to share knowledge to improve health care around the World.

Email: info@worldhealthinnovationsummit.com

Website: http://www.worldhealthinnovationsummit.com

Twitter: @HIC2016 @garethpresch #worldhealthinnovationsummit

 

Posted in Uncategorized | Leave a comment

Making Continuing Professional Learning and Development in the Workplace Count

In 2013 NHS Employers, commissioned by the Department of Health, funded this research study as a means of developing the evidence base to support the national Educational Outcomes Framework (EOF). The EOF aims to ensure that the health workforce has the right skills, behaviours and training, available in the right numbers, to support the delivery of excellent healthcare and health improvement. The intention was for the framework to act as a catalyst for driving quality improvement and outcome measurement throughout the NHS by encouraging a change in culture and behaviour, including a renewed sense of focus on addressing variation in standards and ensuring excellence and innovation in providing education. Continuing Professional learning and Development (CPD) can involve any relevant learning activity, whether formal and structured or informal and self-directed.

The study set out to develop and test a CPD Impact Tool that identifies mechanisms for measuring the impact of learning on individual, team, service and organisational effectiveness in relation to improvements in quality of care and patient outcomes in the workplace.

Figure 1: Research Study Phases (Pawson & Tilley 2008)

We demonstrated in our findings that the main purpose of CPD is the delivery of person centred safe and effective evidence informed care in the workplace. The outcomes include:

  1. An overarching framework for understanding the purpose of effective CPD (Fig 2).
  2. Four new theories of transformation to enhance quality of care, specifically the transformation of (i) the individual’s professional practice, (ii)skills to meet a continually changing context (iii) knowledge translation, (iv) workplace culture/context.
  3. Indicators that measure the impact of learning for individuals, teams, services and organisations
  4. A range of ways to evaluate achievement of CPD impact for different professions and contexts.

Figure 2: Four Main Purposes of CPD

Our findings have concluded that in order for CPD to be effective it has to address all of the outcomes for individual, team, service and organisational transformation, because they are interrelated and interdependent. Transformation of workplace culture and individual professional practice are important pre-requisites to the other two sub purposes of CPD if the transformation of skills and transformation of knowledge are to achieve their full impact in the workplace on service users. Both the workplace and organisation are key influencers on whether the outcomes of CPD are achieved for the individual because both the workplace and the organisation can negatively or positively impact on what is considered important to focus on in terms of learning and development content, whether the workplace can be used as a resource for learning and how learning and development may be enabled. Therefore, we should be focusing on the development of individual professional practitioners as transformational whole systems leaders in order to reap the benefits of enhanced knowledge and skills, which will in turn promote enhanced team effectiveness in the workplace in an ever changing context in order to capitalise on CPD resources and investment.

For detailed insight into the tool, case studies, and recommendations you can view the full report at http://www.canterbury.ac.uk/health-and-wellbeing/england-centre-for-practice-development/recent-publications-and-reports.aspx

Report Authors:

Jackson, C. Manley, K., Martin, A, Wright, T. (2015) Continuing Professional Development (CPD) for quality care: context, mechanisms, outcome and impact. ISBN 978-1-909067-39-4.

Carrie

Carrie Jackson

Director – England Centre for Practice Development
Faculty of Health and Wellbeing

Canterbury Christ Church University
North Holmes Road
Canterbury CT1 1QU
Kent, England, UK
Tel: + 44 (0)1227 782649 (direct line)
E-mail: carolyn.jackson

PA: anna.humphreys Tel + 44 1227 767700 Ext. 1637

@ECPDCarolyn, @ECPD3

www.canterbury.ac.uk/ecpd

https://www.facebook.com/groups/ecpd1

Fundraising Committee member “making our hospitals dementia friendly by improving patient environment and facilities’

Visiting Positions:

Adjunct Professor of Nursing – Department of Nursing Studies, State University of New York, Buffalo, USA

Honorary Clinical Academic Fellow – East Kent Hospitals University NHS Foundation Trust

Honorary Clinical Academic Fellow – East Sussex Healthcare NHS Trust

Editorial Board Member – International Practice Development Journal www.fons.org/library/journal.aspx

Posted in Uncategorized | Leave a comment

Improving Urgent and emergency care across Kent and Medway Survey

Improving Urgent and emergency care across Kent and Medway Survey.

Posted in Uncategorized | Leave a comment

ECPD Masterclass – July – Clinical Commissioning with the Community: Improving Patient Experience in Practice – Wednesday 29th July at 4:30pm

ECPD Masterclass – July – Clinical Commissioning with the Community: Improving Patient Experience in Practice – Wednesday 29th July at 4:30pm

This Masterclass will be facilitated by Dr Jonathan Webster & Alex Silverstein, during the workshop, Jonathan and Alex will present the collaborative journey in developing a Patient Experience Strategy for five CCGs in North West London.

Through their presentation they will share the practice development approaches used in developing the Strategy (working with the Foundation of Nursing Studies) encompassing developing a shared definition of ‘patient experience’ along with how the Strategy is becoming embedded within clinical commissioning.

For further details and to register your place, please contact anna.humphreys@canterbury.ac.uk

With kind regards

Anna

Jonathan Webster & Alex Silverstein MasterClass Flyer – 29.07.15 – FINAL with Link.pdf

Posted in Uncategorized | Leave a comment

About the England Centre for Practice Development

The England Centre for Practice Development (ECPD) is a national research, evaluation and innovation centre located at Canterbury Christ Church University. We are committed to creating cultures that enable innovation in health and social care practice at the point of care to ensure that they are person centred, safe and effective. Our broad aims are:

  • To promote high quality transformational research and innovation for the benefit of practitioners, patients, carers and the wider public, and
  • To embed research, development and innovation activities so that they become core to the continuous improvement of health and social care services.

Our collaborative funded research and development programmes and core activities focus on:

  1. Developing integrated whole systems approaches in health and social care across the health economy to deliver person centered, safe and effective care.
  2. Multidimensional workforce development models that capture evidence of the complexity of care across different contexts for commissioning of future integrated services, workforce planning and skill mix.
  3. Workplace programmes that develop holistic skills in the facilitation of learning, inquiry, practice development, quality and service improvement to enhance the effectiveness of care at the front line.
  4. Supporting organisations to undertake impact evaluation of innovations at multiple levels, develop shared purpose frameworks and co-produce collaborative tools and frameworks that underpin whole systems change.
  5. Creating a critical mass of transformational leaders at the front line with culture change skills to underpin sustainable person centered workplaces that focus on well being for all.

Our key business work streams are funded programmes of:

  1. Transformational Research, Development, Inquiry and Consultancy approaches to:
    • Workplace facilitation for learning, transformation and innovation
    • Workplace culture  change and leadership for person-centred care and knowledge mobilisation/translation
  2. Workforce Development

http://www.canterbury.ac.uk/health-and-wellbeing/england-centre-for-practice-development/england-centre-for-practice-development.aspx

Posted in Uncategorized | Leave a comment