Practice development, cakes and interpretive dance…

If anyone had told me this time last year that I would be leading a project about an area I am so passionate about, with the full backing of the University Health Board, I would have not believed them. Yet here I am, still on a “high” at the end of an amazing week in which our project team received excellent feedback from a stakeholder meeting and where we have also been to London to further develop skills to take the project forward.

I have always been interested in improving care for people with learning disabilities when they use acute hospital services. This has stemmed not only from reading reports which have consistently highlighted the poor experience and poor health outcomes, including premature and avoidable death of people with a learning disability in general hospital care (Mencap 2007 and 2012, Michael 2008, Heslop et al 2013),  but also from both professional experiences of supporting individuals when they are admitted to hospital and the personal experiences of having a daughter with a profound learning disability and complex health needs who is a frequent user of hospital services.

For the past 9 years I have sat in Learning Disability/ General Hospital Interface meetings, acute care bundle implementation group meetings, provided ad hoc teaching to A&E junior Doctors and outpatient staff and even piloted a LD liaison role as part of my post reg BSc. (which never got past the pilot stage despite the success and obvious need, due to a lack of funding). However nothing ever seemed to change and I began to lose heart feeling that learning disability care was seen as such a low priority and that I couldn’t make any difference myself.

Last year I was encouraged to apply to the Foundation of Nursing Studies (FoNS) to take part in the Patients First programme. The application and interview process were particularly demanding and at times I questioned if it was really worth the hard work and effort but with the help and support of Ruth Northway and a practice development nurse, who had helped previous projects within our Health Board to apply for the programme, I managed to get the application form submitted by the deadline. No one was more surprised than me when following an in depth interview the project was finally accepted by Patients First.

Our project aims to improve the experience of general hospital care for people with a learning disability within Hywel Dda University Health Board by developing and delivering meaningful training to general hospital based staff, based on pertinent issues identified from ward staff and people with a learning disability and their carers.

The project team initially comprised of 4 LD nurses but as the project has progressed we now also have an individual with a learning disability who is supported by their health advocate, the sister on the ward where we are piloting the project, and the Mencap family advisor. We have completed questionnaires with ward staff, individuals who have a learning disability and have recently been in hospital, their carers and family, to establish a baseline of how ward staff feel they are doing and how individuals who received their care felt they did. The next stage of the project is to meet with stake holders to find what additional information will help the ward staff meet the needs of people who have learning disabilities in their care. It is hoped that by developing a training programme/resource which has been designed to meet the needs of the ward staff, as well as what people with a learning disability and their carers want the ward staff to know, it will be better received with more engagement and ownership of the training. This training will form part of the 1000 Lives Acute Care Bundle (Public Health Wales, 2014) which has been a key driver in getting the acute services to engage with the project.

The project started in November’15 and will run for 18 months. During that time we have full support from a facilitator who has helped guide and provided practical and moral support. We also have 6 workshops to attend in London which provides a great opportunity to develop our facilitation skills, network with other projects (and although we are all working with different client groups we all seem to have similar themes), explore our creative side (I will never live down the fact that one of our team had to participate in interpretative dance!) and generally have a good time and grow in confidence.

One of the key features of the patients first programme is that the director of nursing has to support the application and agree to the conditions for example protected time for the project, release to attend workshops in London. When there have been queries over issues such as attending meetings they can be directed back and we have been fully supported by management, something which was previously lacking.

The bursary has also helped tremendously as there is no worry if your study leave will be approved or not, and also by providing quality refreshments at meetings, our stakeholders feel valued and appreciated (one important lesson we have learnt is that there can never be too much cake!!).

Not only has the project developed, but I feel I have developed professionally as well. I have gained confidence in the knowledge that an idea I had has grown into something achievable and the project team with the support from FoNs will be able to make a real difference.

If you have an idea to improve things for people you work with but don’t know where to start, or think you couldn’t possibly change things then get in touch with FoNS and discuss your ideas as it won’t happen unless you try.

 

Linda Phillips

Community Nurse, Hywel Dda University Health Board

 

For further information regarding the Foundation of Nursing Studies and their Patients First Programme please see their website (the call for applications for this year is currently open and runs until 7^th September):

 

http://www.fons.org/programmes/patients-first.aspx

 

 

References

Heslop et al (2013) Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) Final Report. Norah Fry Research Centre : Bristol.

 

Mencap (2007) Death by Indifference: Following up the Treat Me Right Report. Mencap: London..

 

Mencap (2012) Death by Indifference: 74 Deaths and Counting – a Progress Report 5 Years On. Mencap: London.

 

Michael J (2008) Healthcare for All: A Report of the Independent Inquiry into Access to Healthcare for People With Learning Disabilities. HMSO: London

 

Public Health Wales (2014) Improving General Hospital Care of Patients who have a Learning Disability. 1000lives: Cardiff.

Time to get started with your dissertation?

 

It’s the time of year when many students start thinking about their dissertations. Even though the module might not formally begin until September, the summer is a great time for doing background reading, mulling over your thoughts and talking to people to clarify your ideas. I am a great believer in not rushing this beginning stage. Ideas take time to develop. Big projects cannot be developed overnight and taking time consider different possibilities is time well spent.

 

So where do you start? I always advocate that the best dissertations arise from practice.  Good dissertations generally address a research question which has been triggered in clinical practice. This is a logical application of the principles of evidence based practice.  You identify a question and then seek to answer it using the best available evidence.  If your dissertation is to be a literature review, then the best available evidence is the published and sometimes unpublished relevant literature.

 

When research questions arise from practice, their relevance to practice cannot be questioned. I might be a little biased, but I tell my students that the dissertation is the best module they undertake as it brings together all their practice and academic learning.  At this stage in your degree, you are confident to identify areas of practice that you feel could be improved, don’t work well or that you just feel generally unsure about. You will also be confident to describe the problem and set it in context.  Now is the opportunity to draw on your literature searching and critical appraisal skills to identify relevant evidence and evaluate its strengths and weaknesses.  This is no longer an academic exercise, undertaken with the sole intention of passing a module, it is a response to a genuine practice situation where your findings can have an impact. The benefit of  identifying a question that arises directly from practice is that you have an obvious line of dissemination- returning to practice to discuss your results is a great example of getting research into practice.

 

So while holidays are beckoning and a well earned break from a challenging academic year is approaching, do not miss the opportunity for some mental reflections on practice and thoughts on where your dissertation might take you next year…

 

Helen Aveyard

 

Co-author of Doing a literature review in health and social care, co author of A post-graduate’s guide to doing a literature review in health and social care and co-author of A Beginner’s Guide to Evidence Based Practice in Health and Social Care

 

 

Research: A Positive Choice

Last week I had the privilege of attending the annual Positive Choices Conference held this year at the University of Nottingham. For those of you who have not heard of this event 2016 was the 12^th time the annual conference has been held, bringing together student learning disability nurses from across the UK and Ireland to celebrate the positive choice they have made to become a learning disability nurse. As ever the two days went far too quickly but were as inspirational as ever – if the enthusiasm and commitment that is evident among the students during the conference could be bottled and shared some truly amazing things would happen.

This year I had a slightly different role within the conference as I was working in the exhibition area on a stand to celebrate the 20^th edition of the Journal of Intellectual Disabilities. Whilst this meant that I did miss some conference sessions it did give me a great opportunity to talk with many of the people attending the event. The sessions that I was able to attend were as inspiring as ever but the discussions I had outside of these also inspired me as it was encouraging to hear so many people talking positively about research.

It was great to hear how so many of the students I spoke to the use the journal (and others) to develop their academic work. Those who are currently undertaking dissertations often indicated that this was stressful (and the free stress balls on the stand were gratefully received!) but they also spoke with enthusiasm about the opportunity to increase their knowledge regarding an aspect of nursing practice.

I spoke with some recently qualified nurses who told me how they had been using research to bring about changes in practice and also how they were trying to encourage their colleagues to get involved with research. Other delegates discussed research projects they are currently undertaking and / or ideas for projects they would like to develop. Yet others talked about how they would like to get more involved in research whether this is via participation in research studies and the promotion of evidence based practice, or as part of a longer term career plan to develop a research focused role.

I mentioned that this was the 12^th Positive Choices Conference and, having also attended the first such event it struck me how much has changed over the intervening years in terms of the place of research in learning disability nursing. I honestly do not think that 12 years ago so many discussions regarding research would have taken place or that there would have been so much enthusiasm for the development and use of research within our profession.

A recurring theme in some of the conference sessions I was able to attend was the recognition of how much things have changed in terms of the support provided for people with learning disabilities over the past century or so. One presentation by the fantastic Purple Patch Arts (Twitter: @PurplePatchArts) included an animation showing the development of services up to the present day. One of the key milestones they highlighted was the research undertaken by Tizard and colleagues that demonstrated that if children with learning disabilities were moved from long stay institutional settings to smaller, homelike services then  their quality of like improved significantly. This research played a key role in subsequent changes to the way in which support is provided for children with learning disabilities and their families. Research can, and does, make a difference.

However, whilst there have been positive developments in terms of the support provided for people with learning disabilities it was also acknowledged within the conference that there remains much to be done if the people we support are to be truly included in society and their quality of life improved. Reflecting on the conference since I have returned home, and having said that research can and does make a difference, I therefore feel encouraged by the discussions I had during the conference about research. Things still need to improve and research has an important role to play in this process. There is growing enthusiasm for research within learning disability nursing, more research being undertaken, and a greater focus on ensuring that services and support are based on the best available evidence. I have therefore come away from the conference with confidence that learning disability nurses will play an important role in the development of research that will make a positive difference to the future lives of people with learning disabilities. I have also come away with a renewed personal commitment to develop further research, to make sure that research has an impact on practice, and to support others to do the same. Will you join me and make research a positive choice?

 

Ruth Northway

(Twitter @northwayruth)

Clinical Academic Careers in Learning Disability Nursing

The Clinical Academic Learning Disability Nursing (CA) post is an innovative and exciting development. Contributing to shaping our profession involves working with NHS areas throughout Scotland to develop recruitment and retention strategies for pre-registration learning disability nursing students to support local workforce planning (Scottish Government 2012; Scottish Government 2013). This includes working closely with third sector organisations, Further Education Colleges, Practice Education Facilitators, mentors, and service users and carers to enhance programme design and delivery to meet workforce planning needs and to ensure effective service delivery in the short and longer term.  The Scottish Government funded secondments at Glasgow Caledonian University (GCU) and Edinburgh Napier University (ENU) are examples of the contribution learning disability nurses can make to improve the support for people with learning disabilities. The scope and range of the post is to support the development, implementation and evaluation of a National sustainable model for pre-registration nursing in Scotland. The project title is delivering Pre-Registration Learning Disability Nursing: Moving towards a National sustainable model in Scotland. Opportunities and challenges have been many including numerous new practice learning experiences developed across a range of areas but recognising more work is still to be completed (Scottish Government 2015).

 

Embracing the goals of strengthening the capacity, capability, quality and profession (Scottish Government et al, 2012) has meant embracing change and innovation with research and investigation into learning disability nursing by learning disability nurses being a priority. The opportunity to undertake a PhD as a mature student and potential to contribute to an expanding evidence base has genuinely opened my mind to each of our individual potential as a nurse regardless of age or stage of career. Scoping and enabling a better understanding of a sustainable learning disability workforce of the highest quality was of course called for by Northway et al (2006) and Griffiths et al (2007). My area of interest is increasing understanding of the factors that influence the effectiveness of learning disability nursing interventions. Personal achievements relating to this study have included poster presentations at Glasgow Caledonian University (2015), The Scottish Senior Nurse Annual Conference (2015) and most recently The Seattle Club Conference (2015). Now if you are aspiring to play your part the Seattle Club is a research-based intellectual disability conference that has a number of core principles, the first one being that participation is restricted to authors and co-authors of accepted oral and poster presentations together with researchers at the beginning of their research careers. The selection of contributions for oral and poster presentation is designed to achieve a mixture of more established and early career researchers. We will be hosting the Seattle Club in GCU towards the end of 2016. A great extent of the evidence presented at this conference is useful to learning disability nursing practice – hope to see you there.

Isla McGlade Isla.mcglade@gcu.ac.uk

 

References

Northway, R.; Hutchinson, C.; Kingdom, A. 2006, Shaping the future: a vision for learning disability nursing. UK Learning Disability Nurse Consultant Network.

Griffiths, P.; Bennet, J.; Smith, E.  2007 The Research Base for Learning Disability Nursing: A Rapid Scoping Review. King’s College London.

Scottish Government. 2012, Strengthening the commitment The report of the UK Modernising Learning Disabilities Nursing Review (ISBN: 978-1-78045-785-7) Scottish Government, Edinburgh.

Scottish Government. 2013, The keys to life: Improving quality of life for people with learning disabilities. (ISBN: 978-1-78256-636-6),Scottish Government, Edinburgh.

Scottish Government. 2015, Strengthening the Commitment: Living the Commitment (ISBN: 978-1-78544-410-4) Scottish Government, Edinburgh.

Reflections on Research

I guess I should start this blog by stating that I have never conducted a piece of clinical research. While I have been a participant in some studies and use research every day in my practice, I have not yet had the opportunity to apply my skills as a researcher.

Why then am I writing something for a page dedicated to research in learning disability nursing? I have been qualified as a registered learning disability nurse for nine months now, working as part of a newly formed intensive support team. As a firm believer in reflective practice I thought it was important to look back to the end of my time as a student, the start of my nursing career and explore how the use of evidence has helped me to further develop my practice.

I think every third year student nurse has fears: will I pass the course? Will I get a good job? Then there is the universal fear: am I ready and will I be a good nurse? I chose a role in a new service that provided a model of care I had only briefly encountered as a student. Furthermore, within this specialised team I had succeeded in getting a Band 5 to 6 development post. This added to the growing list of worries that I had; I knew I had a good level of knowledge on a range of subjects (and some shaky knowledge in some areas too) but I did not feel nearly prepared enough.

Before my first day in post I had conducted a number of literature searches to explore various aspects of the service, the types of individuals who require the support of an intensive support team and what we know about factors that may lead to placement breakdown. I realise now that this level of preparation is a little over the top, and will happily admit to being a massive geek. Looking back, my fears that university hadn’t prepared me at all for working life had caused me to overlook the skills that I had gained and had used for the three years of my degree. Not only was I able to retrieve evidence but I had the skills to appraise and synthesise this, allowing me to apply the findings to my own experience and practice. I was able to explore research and learn about topics and subject areas I had never even encountered before.

The application of research, in the form of evidence-based practice, should be a core element of professional nursing care. In my previous experience, working in the independent and voluntary sector with children and young people with learning disabilities my practice was well-intentioned if uninformed. Things were done, and on the whole done well I should add, because it worked previously or because it had always been done that way. However, even before knowing how to critically analyse an article or conduct a literature search I was researching topics and always wondering why.

As a qualified nurse I do not believe I have changed overly much. At a conference recently I was asked if I was as ‘challenging’ now as I was when I was studying and I’d imagine if you spoke to some of my colleagues they would answer in the affirmative. University taught me the gold standard, the ideal and the idealised version that shaped my expectations and practice. As a result of this, and my own personal development, I have learned to challenge and ask people the dreaded ‘why’ question. In fact, in the organisation I currently work for all members of staff were encouraged to do this because sometimes, in the day to day experience of work and caring, we lose sight of the ‘why’ and absorbed into the routine and the process. This, then, is the role of research, to give us an answer and to ensure that the support we give to an individual is meaningful to them and that our contribution makes a difference.

At the heart of my nursing care is a belief that in order to get the best for each individual I see, and help them to achieve their goals and aspirations, I have a duty to give the highest standard of care I can; this involves adopting best practice and remaining up-to-date. I do this at an individual level through various subscriptions and mailing lists, through social media and through the various events and conferences I attend. However, I recognised early on the need for like-minded individuals, and my favourite placements were those where people discussed developments and new ideas were valued and welcomed. It should come as no surprise that in choosing my first job role I asked about evidence, participation in research and how findings are embedded into clinical practice.

In my brief time as a nurse I have found that it is not enough to have a handful of individuals who carry out research, or a handful that keep themselves up-to-date and seek to improve their own practice. In order to improve outcomes for those people we support the services and organisations around them must be committed to quality improvement and strive for best practice. This does not mean just the development of their research portfolio but a number of key commitments: a commitment to developing staff, a commitment to providing access to current evidence and a commitment to embedding findings in clinical practice. The third commitment represents the greatest challenge, particularly in larger organisations when there is a need to share findings with a number of staff working in different localities.

In meeting this challenge, my current employer employs a number of strategies within the LD directorate including the development of clinical effectiveness groups; the purpose of which is to develop the care provided through the establishment of care pathways based on evidence and best practice. It is exciting to see that other nurses engage with this and are in some areas taking a lead role. Furthermore, through a clear strategy, forum events and events for qualified learning disability nurses the organisation demonstrates that good practice can be shared and developed by nurses at all levels and stages in their career.

The final challenge I would like to mention, and one I have not yet lived up to myself, is where nurses working in specialised areas should turn practice-based evidence into evidence-based practice to be able to share it more widely with their colleagues. I am aware through my work that intensive support models are being explored nationally, but there is a clear need to build up an objective evidence base to demonstrate the successful outcomes they may bring about. In doing this it ensures that we recognise and celebrate the unique contribution that we, as learning disability nurses, make to the lives of individuals so and their families and carers.

Joshua Kernohan

Collaborative research: getting stuck

Being involved in research is everyone’s business (NHS England 2013). But the best research to be involved with is collaborative – well that’s what we think!

Working together at all stages of the research process is energising and enlightening. Everyone is good at different parts of research so it’s important to work to everyone’s strength’s. Equally remembering that it would be good to have a challenge along the way.

Research and the process of completing research can be quick or slow, depending upon many factors. Some people perceive research as having an idea, gathering the data and before we know it an article of the findings appear. Inevitably the research process is much slower than this and working collaboratively can increase the length of a project considerably.

At the end of 2014 a group of colleagues – lead by Dr Darren Chadwick – thought about seeking the views of people with learning disabilities about the up-coming General Election (scheduled for May 2015). The election was a set event and thus this provided us all with a target date to plan around. Placed in the same year as MENCAP’s Hear my voice campaign all about voting https://www.mencap.org.uk/allaboutvoting we wished to look at local views.

Proposals where designed and collaborative partners sought. Identifying partners for the research seemed obvious to the team as we had fantastic links to local advocacy groups. Clearly we needed to seek agreement with the groups and this they did with enthusiasm.

It was decided by the research team that a convenient sample approach would best fit the project to be undertaken. The convenience was about people being free to join in with the project at will. The nature of the groups fully represented the population of the project (Sousa, Zauszniweski & Musil 2004) and thus provided a platform for peoples voices to be heard.

The research team utilised a series of focus groups in order to gather the data for the project. The aim was to conduct three focus groups over the period of the research with two before the election and one after.

Having been engaged in research on many occasions the greatest challenge can be engaging people to be a part of the research. On this occasion the people in the advocacy groups were eager and keen to engage – which was fabulous.

As learning disability nurses our role in this collaborative approach was important and imperative to the data collection stage of the project. We each supported the focus groups with Dr Darren Chadwick. This supported included taking an active part in the focus groups by asking questions from the research template, to taking basic supplementary notes but above all engaging with everyone present.

Consent to engage or disengage within a research project is vital. This project utilised the standard approach which sees the participants having the right to opt in or opt out of the research at any stage.

So where are we at?

Well there is always a drift in projects of this nature and we are at the transcription and analysis stage we have a vast array of date from 7 focus groups and 4 individual interviews that have been undertaken.

Our own learning curve continues as we prepare for the next steps. The analysis needs to explore all data collected. For this we are to learn about a data analysis tool called NVivo. Once analysed the plan is to return to the project participants to check we have the correct themes. This is the most challenging aspect of the drift in time of a project – what do the participants remember! Whilst conducting the focus groups the transfer of memory from meeting to meeting was very good and along with the verbal recordings taken etc we are hopeful this process will confirm the theme’s that emerge from the analysis.

With the advent of an all degree level profession we have a greater opportunity to increase research within Learning Disability Nursing. Studies by our very own Northway et al (2006) & Griffiths et al (2007) have set the scene. The task know is to capture, inspire and encourage newly qualified RNLD’s (Registered Learning Disability Nurses) to share the great projects they have done in university with the rest of the profession. Getting their work published and hopefully taking some fabulous ideas forward into larger scale research projects!

Do readers of this blog have any suggestions as to how this might be processed? Ensuring students interest and engagement in research post finishing their courses is important.

Research is important as it guides our future whilst taking account of our present / past. So if we are to remain credible then research and learning disability nursing has to be forever joined.

 

Authors: Mick Welsh & Lynne Westwood

(Our Research Team are: Dr Darren Chadwick, Dr Liz Tilly & Dr Stephanie Brewster)

References

Griffiths, P, Bennett, J, & Smith, E. (2007) The research base for Learning Disability Nursing: a rapid scoping review. Kings College London.

Minogue, V. (2013) Research and development strategy 2013 – 2018: Research is everybody’s business. NHS England publications gateway reference 00894.

Northway, R, Hutchinson, C, & Kingdon, A. (2006) Shaping the future: A vision for Learning Disability Nursing. UK Learning Disability Consultant Nurse Network.

Sousa, VD, Zauszniewski, JA & Musik, CM (2004) How to determine whether a convenience sample represents the population. Applied Nursing Research, Volume 17, Issue 2, pages 130 – 133.

Tackling Disabling Practices: Co-production and Change

In this blog Sue Turner discusses a  three year research project by the Norah Fry Research Centre, School of Policy Studies in partnership with Disability Rights UK

The Equalities Act 2010 requires public sector organisations to put reasonable adjustments in place for disabled people, so that they will not be disadvantaged when accessing services. Unfortunately we know that this does not always happen. Why is this and what can be done about it?

Broadly, these are the questions the ‘Tackling Disabling Practices’ project is trying to answer, recognising that top down policies do not always work, and using different theories of change to understand what is happening. The project is big, consisting of five different strands through which questions about what leads to change at a practice level can be asked, and crucially how disabled people are involved in, and are part of making change happen.

Briefly the strands are:

1. Improving everyday interaction between people with dementia and their support workers; also young people with learning disabilities who are starting to employ PAs.
2. Changing practices in universities which unintentionally marginalise disabled students and disabled staff
3. How to shift health care practices by making reasonable adjustments for disabled people using hospital services.
4. How to develop better interagency support for parents with learning disabilities.
5. How disabled people can take direct action to develop services and affect commissioning practices.

I am involved in strand three. With regard to this strand it is worth remembering that the NHS Contract includes the requirement for service providers to carry out an annual audit of compliance with providing ‘reasonable adjustments for service users, carers and legal guardians who do not speak, read or write English, or who have communication difficulties (including hearing, oral or learning impairments’ (NHS England 2015, p.14). Work is currently focused on gathering information from an analysis of audit and inspection documents. There will also be a survey of patient experience leads, Healthwatch representatives and disabled people and their families, as well as face-to-face interviews with disabled people. The information gathered will inform two workshops for representatives from NHS hospitals and disabled people including people with learning disabilities who have used these hospitals’ services. The first workshop will focus on identifying strategies and approaches that could be taken to improve the delivery of reasonably adjusted services, and will ‘buddy up’ participants for peer support purposes. The second workshop will build on what people have learnt from implementing these strategies and approaches, and identify learning that could usefully be shared more widely.

So it is early days for this project, but I wanted to share this with you as I am sure that getting reasonable adjustments embedded in day to day practice is something that many of you will be grappling with. If you have found strategies that work, or have audited the provision of reasonable adjustments in your own organisations we would love to hear from you. Please contact Stuart Read (stuart.read@bristol.ac.uk).

 

Sue Turner, Learning Disability Lead at the NDTi

 

Reference:

NHS England (2015) NHS Standard Contract 2015/16 Service Conditions. Available at: http://www.england.nhs.uk/wp-content/uploads2015/03/14-nhs-contrct-serv-conditions.pdf

Managing Time Effectively aka The Frustrations of a Researcher in Waiting!

I love research! Why do I exclaim this fact? Well it continues to surprise me that so many student nurses I come across appear to view it with trepidation and fear. Colleagues at the University of Leeds are currently exploring the best, most effective ways to teach research to nursing students to attempt to counteract this worry and concern. I’m reminded of Ruth’s words in setting up this forum “Research is not an optional extra: we all need to develop this aspect of our role”. So what is it that’s scary? In her blog in February Ruth talked about the possible ‘miss-selling’ of research in the way it’s taught. I think that we can overload students with theories; methodologies and design and forget to focus on the heart of research, simply the question. In my experience, once someone has the opportunity to choose their question they quickly find the interest and enthusiasm that can transcend the more difficult stages (recognising the stress of many friends in the midst of doctoral research!).

The reason I have questioned this attitude to research more lately is because I see myself as a frustrated researcher in waiting. I undertook research as part of my BSc in learning disability nursing over 20 years ago now and loved every minute of it; but although I dabbled and contributed to other people’s studies I didn’t have an active involvement in research until I completed an MA in Social Research five years ago. This re-fired my enthusiasm but was quickly dampened by the demands of the day job. In reflecting on how we teach research at Leeds I’ve been minded to consider how I apply this to my own ‘research’ role. Somewhere along the line I’ve realised that I’ve placed too much importance on striving towards feeling like a researcher through a formal learning process and not enough on the heart of research. Although I’ve recognised the issues which impact on the health, lives and experiences of people with a learning disability I haven’t always ‘seen’ the research question within them. On occasions I’ve participated in the research process through exploring best practice or evaluating services without acknowledging a research role. In short I’ve been my own worst enemy!

So how do I change my focus? My first step has been to evaluate my role in relation to research, in particular seeing research opportunities within all of my activities as opposed to research being one strand of my work experience. In this way I have been able to develop areas of interest and experience that I may not have identified before e.g. Through placement liaison I have been involved in an evaluation of  a clinical supervision model within offender healthcare; Through teaching on a specific research module I have contributed to a systematic review on research teaching. Although I still have a tendency to jump from one idea to the next in a disorganised manner I have managed to develop a clearer vison for myself as a researcher and take confidence from this.  I often refer back to a fridge magnet I have with the words of T F Hodge, “to conquer frustration one must remain intensely focussed on the outcome, not the obstacles”.

My second step and one that remains a steep learning curve is to improve my time management. I like being a busy person and generally manage my workload through a love of lists! My time management for research involves dedicating time to think, read and explore ideas (not necessarily in that order). Whilst this may sound obvious to some people it is not something that comes naturally to me. I have realised I’m always in a hurry and instead of taking time with ideas I usually think “Well I’ll just answer that email, make that call, finish that presentation…”. A colleague who recently started a PhD commented that what she was enjoying most about her study was allowing her self-time to read.

I recently came across a great post on time management for academics by Nick Fearnster http://greatresearch.org/2013/08/31/time-management-tactics-for-academics/ Nick talks about his five B’s as tactics for time management. These are bits, budgets, buffers, bounds and barriers. There is a challenge here not just in how we manage time but how we view it. These tactics are about recognising the fluidity of time and not limiting ourselves but also being ruthless about our priorities; including when to say no. Another lesson I need to learn!

Jo Lay

University of Leeds

Feminism, learning disabilities and the importance of research

The inspiration behind this blog is the release of the movie “Suffragette”.

I had been considering a number of ideas for this blog but listening to a BBC Radio 4 interview made me realise this was the subject I wanted to write about. Feminism is a subject which I feel strongly about, and through this subject I want to start a necessary and important conversation about feminism and women with Learning Disabilities.

Being a woman in today’s society is hard.  As a woman I am often deemed as less than a man, not as strong, not as brave, not as intelligent, not as worthy.  Often I am told to “grow balls” to “man up”, it infuriates me, and it makes me feel less than a person. If people who use those phrases really examined what they were saying – would they still use them? Other times I worry about my appearance, my weight, do I have too many wrinkles, am I too pale, am I too grey, and then I worry that I have become superficial?  As women we are constantly under scrutiny and bombarded with images of how we should look act and speak. As a woman I spend so much time and money investing in making myself look and feel right so that society becomes more acceptable of me: I internalise my ideas from socialisation.  This makes me angry at myself and society, resulting in my feeling frustrated and angry.

Last year when considering topics for my dissertation I was incredibly interested in learning about the experiences of being a woman with learning disabilities,  knowing how unequal society is for women.  When I entered the world of learning disability nursing I was very naive. My journey resulted in meeting many women who showed me how hard the world can be for a woman with learning disabilities.  I met women who had been abused, I met women who had been marginalized throughout their whole lives,  I met women deemed unable to have a job.  Women who were told they were unable to raise their own children and women who had to fight to have a choice of where to live.  I met so many women who had things happen to them, because they were a woman. There are women living with uncertain futures, in the hands of people who don’t know them or what their wishes, hopes and dreams are.  This, for me, was one of the hardest lessons of learning disabilities nursing.

Whilst seeking research on the experiences of being a woman with Learning Disabilities, I found very little available: there is some but more is needed.  I would like to hear the stories of women with learning disabilities.  I want to be able to empower all women to have an equal and fair access to society, and to be able to make choices about their own futures.  If a woman has been a victim of sexual abuse and is afraid of men, how can it be right to put her in a home living with and being looked after by men?  Where are her rights?  But how can I empower women without understanding their stories, their lives?

I am planning next year to start a Masters in Disabilities Studies, and then move onto a PHD.  I believe through research, we can reach out to women with Learning Disabilities to support, enable and empower them to have the tools to help them live in a fairer and more just society, to be able to stand up to, and recognise, gender inequality.  To help them have greater control over their lives and their ability and belief in themselves that they can be in control of their future.  Through research I truly believe that we can start to tackle these issues, that we can learn from each other and teach one another coping mechanisms.  Research can show us the journey so far, and through research we have the ability to make changes to make society more equal and just for women with learning disabilities.

Helen Rose

November 2015

Before you blow the whistle – what you need to know

 

“If it can be observed, it can be measured” 

                                                           Douglas W. Hubbard

What do you believe is the real cost of whistleblowing to you? The people you care for? Your  organisation? How can you determine the real cost of risk to clients and staff? How bad would things have to get before you blow the whistle? And what do you really need to know before you take action? How can research skills help you in this situation?

This blog aims to answer these questions and shares with you my story, lessons learned and helpful tips should it ever happen to you.

As I’m turning on the computer, I’m having flashbacks of myself sitting in meeting after meeting predicting a severe staffing crisis in the weeks and months to come. An influx of admissions, clients needing supportive observations, staff resigning, accumulated in a staffing shortfall of 30 staff. Safeguarding incidents, accidents, work related sickness, RIDDOR alerts are all on the rise.

There is no shortage of data to support my request to put a halt on admissions until recruitment activity could catch up. While I get plenty of sympathy from my colleagues, I don’t get any assurance that things will change. The Nursing & Care Department is at breaking point-and so am I.

My heart is beating fast as I’m writing the letter. Speaking up when good people make bad choices is really difficult. I press “send” and know there is no going back.

The external safeguarding team and local commissioners put a block on admissions due to their safety concerns for clients and staff just 2 days later.

A manager from head office comes to visit a few weeks later. Unfortunately, he doesn’t get round to talking with me. The stress of the last few months has taken a toll on me. I’m signed off sick by a doctor initially for a week.

Two days in I’m rushed to the hospital and diagnosed with DVT and a tumour. I need extensive medical treatment. Although the letter is still playing on my mind, I feel that going back to work is my best option. I’m informed that while I’m gone, restructuring has taken place. My position is no longer available. I choose redundancy. I still want to know the outcome of my whistleblowing letter and subsequent investigation.

I’m still on Clexane medication when I attend a grievance hearing with a Senior Manager from head office.  I go through events and remind her of the promise of the organisation to deliver high quality, person –centred care. I ask her for an outcome letter to my original complaint. Reading through the outcome letter from her investigation, I’m still none the wiser. I decide to appeal and attend a final grievance hearing. I finally get a letter back stating “Sorry –the outcome letter does not exist”.

Key learning points:

Before you write a whistleblowing letter:

If you feel quality is at risk: Define what quality exactly means to you. This will give you a baseline from which to work from. Formulate a question that can be answered from the review of the data available to you.

Collate and review data:

Compliance does not always leave a paper trail. Non –compliance on the other hand tends to leave incident forms, accident forms, reports, non –completed checklists, complaints, etc. If your organisation has a database collating Clinical Performance Indicators, it will show trends.

From uncertainty to certainty:

Information in data and reports should help you get from uncertainty –to certainty in your decision –making process.

Questions to help you gain clarity:

• What is the decision this measurement supposed to support?
• What is the definition of the thing being measured in terms of observable consequences and how does it matter?
• How much do you already know in this moment of time? What is your current level of uncertainty?
• How does uncertainty create risk for the decision?
• What is the value of additional information?  (Hubbard, 2014)

Costs to the organisation:

To determine the real cost of deterioration of quality within the organisation, you could check:

Safeguarding alerts:

Number of hours spent investigating incident, recruitment costs, cost of temporary agency staff, attendance at internal and external meetings, cost of sickness/absence, cost to reputation and professional standing

Reputation:

Decrease in customer referrals, number of complaints from internal and external stakeholders, reports from the Care Quality Commission in the public domain

 Financial costs:

Accumulation of lost working hours from absence, work –related sickness, investigation resources, possible loss of referrals and transfer of existing clients –impact on current and future profit/loss forecast

If you feel you need to blow the whistle, I can recommend contacting your union as a first step. Public Concern at Work are a non –profit organisation providing excellent advice and support. You can contact them here: www.pcaw.org.uk

I would also recommend that you keep evidence trails as much as possible. While this may seem paranoid, it will support you and your case at a later date.

Much has changed in my life since I’ve blown the whistle. Do I regret it? No. Would I do it all over again? Yes.

While our voice is not always heard, I believe it is my duty to speak up for the people, who can’t speak up for themselves.

I hope this blog has been helpful to you and has shown how research skills (systematically gathering and analysing data) can be applied in a different aspect of clinical practice.

Best wishes for your current –and future career,

Heike

Heike Guilford

@GuilfordHeike

Email: thecoachingnurse@gmail.com

 

Book reference:

Hubbard, D. (2014)  “How to measure anything” Wiley & Sons. Inc.