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Highlighting the huge differences that nursing, midwifery and care staff can make for patients and people in their care

This week is Dementia Action Week, a dedicated week which encourages individuals to take action to improve the lives of those affected by dementia.

Many will be familiar with the fantastic work of Thomas Whitelaw, known commonly as ‘Tommy’ across the country; but always as ‘Thomas’ to his mum Joan, who had vascular dementia and sadly passed away in 2012. Thomas has become a well-respected patient and carer advocate, and is the UK Project Lead for Dementia Carer Voices, Health and Social Care Alliance Scotland.

Thomas regularly speaks to health and care staff about the distressing challenges he experienced when caring for Joan. He has taken that very personal first-hand knowledge to explain how an inequity of service can have a devastating effect on families and carers, to thousands of staff across the country; while at the same time highlighting the incredible difference that great care also made to him and his mother at a very difficult time when their lives were affected by dementia.

Colleagues attending those talks are invited to reflect on how they can and will lead change and make a pledge of their own practice. Pledge trees have been created in hospitals, care homes, universities and workplaces all across the country and these also offer a reflective place for frontline staff.

As numbers increased Thomas recognised that these pledges needed a formal structure around them to ensure that, what were obviously good intentions, turned in to something which could be clearly identified, addressed, measured and turned into a purposeful action.

It was agreed that the national framework for nursing, midwifery and care staff ‘Leading Change, Adding Value’ (LCAV) could offer a solution to formally ensuring that these pledges made a difference, and importantly could be shared elsewhere to spread good practice. Therefore, a partnership was established last year with Thomas and the national team.

The framework highlights the need to apply the same importance on measuring the outcomes of work as well as demonstrating quality. All nursing, midwifery and care staff have a key leadership role in identifying and addressing unwarranted variation – where there are differences in care, experience or outcomes – and supports all staff, wherever they work, whatever their role, to improve outcomes, experiences, and the use of resources.

The framework has been used in various ways to help turn pledges into excellent practice, such as the Healthcare Assistant colleague at the Royal Preston Hospital who recognised that although dementia care in the Emergency Department was of a high standard, it could still be enhanced, particularly for those in their later stages of dementia. Wristbands with a flower symbol for people with dementia were developed, discretely alerting health professionals and ensuring that care is always adapted to individual needs. This has had a hugely positive impact on families, carers and health professionals, helping to prevent what could be often stressful visits.

Another great example is at Sandwell and Birmingham NHS Trust, where it was recognised through listening to the experiences of patients, carers and staff, that people with dementia who had a lack of understanding were frequently experiencing high levels of distress during admission to hospital. This led to a nurse developing a ‘Dementia, Delirium and Distress pathway’, the purpose of which is to embed a compassionate and person-centred approach to managing distress based on individual need, not a diagnosis. Patients are supported and assessed by the team recognising and identifying their individual needs, improving their experience of care.

We have also been delighted to see that Wexham Park Hospital, Frimley Health NHS Foundation Trust has recently opened a new dementia friendly lounge that has been named after Thomas’ mum Joan. The lounge provides a quiet, relaxing space outside of the clinical environment, which can support individuals, families and staff to have a better experience, and have meaningful ‘What Matters to You?’ conversations.

A film of Thomas discussing the links between his work on dementia and LCAV can be viewed here. A national ‘LCAV Atlas of Shared Learning’ is currently being developed and will include a collection of over 200 case studies. These case studies are demonstrating how nursing, midwifery and care staff have identified and addressed unwarranted variation in practice and improved outcomes, experience and use of resources. Importantly, as this is Dementia Action Week, we would be delighted to receive more case studies demonstrating how practice in different organisations, whether big or small, is improving the lives of those affected by dementia.

Further information about Leading Change, Adding Value can be found on our website.

Further information about the work of Thomas Whitelaw can be found on the Health and Social Care Alliance Scotland website.

Susan Aitkenhead

Susan Aitkenhead is Director of Nursing, Professional Development at NHS England and leads on a variety of work aligned to system and service transformation at national, regional and local levels.

Susan is a registered nurse with extensive clinical, operational and strategic experience in delivering healthcare across a variety of settings; and provider and commissioning Board roles based within both the UK and overseas.

She has also worked in a variety of national policy roles such as at the Department of Health providing advice and support to ministers and policy officials across central government departments, and in professional regulation at the Nursing and Midwifery Council.

As part of her role Susan also works one day a week as a non-executive Director for Manchester Health and Care Commissioning, as their Board Nurse. This is a partnership between Manchester City Council and NHS Manchester Clinical Commissioning Group (previously NHS North, Central and South Manchester Clinical Commissioning Groups). These organisations came together to ensure a more joined up and effective approach to commissioning health and social care services for the people of Manchester; and the Board Nurse role adds scrutiny with particular regard to guardianship of the patient experience across all care settings including safeguarding, quality and experience.

Thomas Whitelaw

Thomas Whitelaw is the UK Project Engagement Lead – Dementia Carer Voices.

For five years he was a full-time carer for his late mother, Joan, who had Vascular Dementia, and in 2011 Tommy undertook a walk around Scotland’s towns and cities to collect hundreds of life story letters detailing the experiences of individuals caring for a loved one living with dementia.

Since then, he has engaged with thousands of carers through his ‘Tommy on Tour’ blog and as UK Project Engagement Lead with the Health and Social Care Alliance’s Dementia Carer Voices Project, conducting frequent talks to health and social care professionals and carer organisations across Scotland, to raise awareness of the impact of dementia on families and the importance of empowering carers in carrying out their difficult but vital role.

Tommy’s passion for his work and the Dementia Carer Voices Project has not gone unnoticed. He was the winner of the ‘Age Scotland Jess Barrow Award’ in 2013; Finalist Campaigner of the year 2013 for ‘The Herald Scottish Politician of the Year Awards’, won the NHSGGC Chairman’s Ambassador Award 2013 and in 2015, Tommy was awarded the ‘British Citizen’s Medal for Services to Healthcare’ in recognition of his work to raise awareness of dementia and promote a fuller understanding of the carer journey.

Tommy was shortlisted as a finalist for the Kate Granger awards 2016 and received an Honorary Master of the Open University for Health, Social Care, Education and Policy making influence.

Groups and boards Tommy represents the project and the ALLIANCE on are: Fair for all Board Member North Ayrshire Council, Girvan Community Hospital Dementia Friendly Steering Group Member, Member of Scottish Government Dementia Strategy 2016-2019 Expert Advisory Group and NHS Education Scotland Promoting Excellence Dementia Programme Board Member.

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  1. Kassander says:

    A “Dementia Action Week” bears some similarities to, for example, “Mothers Day”, in that people may concentrate all their attentions on those moments and not throughout the rest of the year.