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News and Updates from today's Improving End of Life for People with Dementia conference

Tommy Whitelaw 'Putting Personal Experience First'Tommy Whitelaw 'Putting Personal Experience First'

Today's conference opens with an update from Tommy Whitelaw Carer on 'Putting personal experience first' and will cover;

  • what is experience of care?
  • end of life care planning for dementia: a personal journey
  • ensuring engaged, informed individuals and carers
  • the little things that make a big difference
  • meaningfully engaging and involving people
  • improving information about what to expect at the end of life

Tommy opened the conference with a very powerful, emotive look about finding out what matters to the people you're caring for, what will really change their lives and experience at end of life.  He gave tips and advice for really making a difference based on his experience of caring for his mum who had Dementia. 

Full powerpoint presentation

Tommy's Biography

For five years Tommy Whitelaw 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. 

Most recently, Tommy has been 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 proje, Member of Scottish Government Dementia Strategy 2016-2019 Expert Advisory Group and NHS Education Scotland Promoting Excellence Dementia Programme Board Member. What Matters to you National Steering Group

This will be followed by a presentation from Lucy Sutton National End of Life and Person Centred Care Lead Health Education England on 'Improving End of Life Care for People with Dementia' and will include;

  • what does good look like?
  • meeting the six ambitions for end of life care in Dementia
  • improving recognition of Dementia at end of life
  • developing staff to meet the needs of people with dementia at the end of life

Lucy discussed the importance of thinking about for the person as a whole and all their complexities when providing end of life care, and the importance of starting conversations early about end of life to support care choices and what is important before capacity issues start. In her presentation she identified lots of new guidance due out and resources available through NHS England and Health Education England. 

Pre conference abstract: This session will give a brief overview of the different aspects involved in improving end of life care for people with dementia. Although Lucy is currently on secondment to HEE she has extensive experience in end of life care both clinically and in terms of national and regional work and policy development and this session will therefore reflect this experience rather than focus primarily on workforce.

Lucy will set out some of the data and supporting evidence which demonstrates why we need to focus on this area. She will then go on to describe what can be done to address the issues highlighted both from an individual practitioner perspective briefly discussing two of the areas people find of most concern, identification of the end of life care phase and supporting people to advance care plan. Lucy will then go on to describe some of the national work that is in place to support practitioners with signposting to some of the resources they may find helpful. This will act as an overview session before the more detailed ones later on.

Full powerpoint presentation  

Dr Victor Pace Consultant in Palliative Medicine St Christopher’s Hospice delivers an extended session on 'End of Life Care Planning in Dementia' and will include:

  • improving the adoption and quality of advanced care planning
  • medical advance care planning and palliative care for people with dementia
  • supporting people with multi morbidity where dementia is one of the conditions
  • reducing avoidable acute hospital admissions

Pre conference abstract

Advance Care Planning (ACP) is even more essential in dementia than in other conditions in health care, as patients eventually become unable to express their wishes for a long time.  However this also makes ACP particularly difficult in this situation, as plans are likely to be made many years ahead and so cannot be too prescriptive; patients are often  reluctant to engage at this stage; and relatives too may feel very upset at the process. The legal framework is also fairly complex.

In order to do good advance care planning one needs to understand the progression of dementia over time as well as the patient’s personal circumstances, beliefs and values. Done in this way, the process should be an intensely personal one, getting to the core of what matters in one’s life. The rapid increase in the prevalence of dementia has made this a very important issue for the health service as a whole, but it is crucial that the process remains individualised and a way of exploring and supporting patients’ wishes, rather than a tick box exercise to fulfil institutional administrative requirements.  Although great strides have been made, this is still a process in development and a lot more needs to be learnt.  However keeping the matter as part of public discourse is essential to facilitate its acceptance.

Full powerpoint presentation

After lunch Professor Adrian Blundell Member, Guideline Development Group, Clinical Guideline on Care of the Dying Adult NICE and Associate Clinical Professor Nottingham University Hospital discusses 'Predicting and recognising last days of life and managing uncertainty', his presentation covers;

  • what can multi professional teams do to reduce the impact of uncertainty of recognising when a person is entering the last days of life?
  • managing patients whose recovery is uncertain
  • identifying how the uncertainty of recognising when a person is entering the last days of life influences information sharing, advanced care planning and the behaviour of healthcare professionals
  • ensuring all staff can recognise signs and symptoms that indicate that adults are likely to be entering their final days of life; or that they may be recovering?
  • managing and communicating uncertainties in dementia & and end of life care

Full powerpoint presentation

Conferences of interest

Effective Non-Medical Prescribing in End of Life Care
Monday 26 February 2018 
De Vere West One Conference Centre

Effective Nurse Prescribing in End of Life Care
Monday 26 February 2018 
De Vere West One Conference Centre

Care of Dying Adults in the last days of life: Improving Care and ensuring adherence to the NICE National Quality Standard
Friday 25 May 2018 
De Vere West One Conference Centre

5 February 2018


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    The Tavistock and Portman NHS Foundation TrustInPracticeClinical Audit Support CentrePlayoutJust For Nurses
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