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Improving End of Life Care: Putting personal experience first

Pauline Mountain MBE Founder Hearts Of Positive Energy opened today’s Improving End of Life Care conference with an inspiration talk on patient centered care and putting personal experience first including: 

• ensuring engaged, informed individuals and carers
• improving information about what to expect at the end of life

In her presentation Pauline discussed how end of life care needs to be a 3-way partnership between the patient, healthcare professional and carer.  Pauline asked where does the patient pathway start and said that end of life care support, advice and information should be from the beginning and right the way through.  The pathway should consist of the 3R's; Recognise, Refer, Retain.  Pauline made reference to the CNO's 6C's Compassion in Practice and how they can relate to end of life care:
 
•Care  - I Trust you to help Me!
•Compassion –I Need you to Understand Me!
•Competence – I Expect you to know Your job!
•Communication – I’d Like us to Talk & Listen!
•Courage –Tell me what I Need to Know!
•Commitment – We All want the same thing!
 

Pauline Mountain MBE– Carer to Chair!
Pauline has three children and three grandchildren. Working life was varied whilst bringing up a family, 18yrs spent as a development manager for a large corporate company was interesting and challenging, gave way to the passion to establish her own catering company, not knowing she would also be caring for her husband Gordon who had Heart Failure and all the co-morbidities that follow. Through the experiences Pauline soon realised the needs and benefits a group of people would gain if they came together with empathy and understanding and became the founder of HOPE - Hearts Of Positive Energy, Heart Failure Support Network www.hopelinks.org.uk. (website currently being updated)

Gordon, aged 69, lived for 30years with Heart disease, ten of those with Heart Failure, sadly he lost his personal battle in June 2008, his Legacy lives on through the work of HOPE. His courage & determination not only inspired me as his widow, also my daughter Amie (23) who pursued a career in medicine, now a junior Doctor, equally determined to make her ‘Daddy’ proud. We shared many very memorable years together, facing the hurdles with a determination & positive outlook, I will hold him in my heart forever; I had the opportunity to share in the life of a very ‘stubborn’ Yorkshire man! PMM

Having walked the rocky road as a carer, Pauline became one of many ‘Experts by Experience’ continued to become instrumental in raising awareness and influence future services, resulting in an independent organisation giving Voice to carers within Lincolnshire, disseminated to local and national agenda’s within Local Authority, Public Health & NHS. Attends & contributes to meetings, workshops and events with a constructive and realistic focus. Named as ‘One of Fifty’ on HSJ inaugural Patient Leaders list, in partnership with NHS England –July 2015 Listener & deliverer of ‘thought provoking’ presentations, to a wide & varied audience a Conference of Health and Social care professionals or a carer group needing support, from the heart with empathy, passion & sincerity.

Involved in partnership with many & varied organisations -
2006 – Present - Chair HOPE -‘OUR’ Hearts never fail….Next steps HOPELINKs CVD Community ‘A Constant Friend’
2009 – Present- Deputy Chair - Lincolnshire County Council ‘Excellent Ageing’ advisory group
2013 - Present – Elected Carer Governor NHS Lincolnshire Partnership Foundation Trust (Mental Health)
2013 – Present – T.E.D. in East Lindsey, Chair of Scrutiny group & Member of Project Management Group
2014 – Present – Elected Non Exec Director Healthwatch Lincolnshire
2014 – Present – member of University of Lincoln research group Healthy Ageing Public Participation Involvement group (HAPPI) leading to many research projects locally and nationally
2015 – Present – member of Cardiovascular Care Partnership (CCP. UK) affiliated to British Cardiovascular Society
2007 –Oct 2014-Chair/Executive Chair (1yr) Lincolnshire Carers & Young Carers Partnership Ltd ‘By Carers for Carers’
2005 –2013–NHS East Midlands Cardiovascular Network PPG (latterly as Chair)
-Essentially Bee Me! - Independent patient & carer representative ‘Voice and Vision’
“I look back on the events of my life previously, having been a carer and nursed Gordon in his final weeks of life, I now feel the caring journey was only the training ground for the continuation of ‘my plate spinning’ In June 2013 I was awarded an MBE – ‘for services to Carers’, without Gordon I may never have embarked on such a road, a very humble & honoured experience! I sincerely HOPE I can continue to make a small difference to others.”PMM

Future events of interest:
End of Life Care

Legal Issues in End of Life Care Masterclass
Thursday 12 November 2015 
Hallam Conference Centre, London

Implementing the NICE Clinical Guideline on Care of the Dying Adult
Tuesday 26 January 2016 
Hallam Conference Centre, London

Legal Issues in End of Life Care Masterclass
Tuesday 12 April 2016 
Hallam Conference Centre, London

 

Patient Experience

Always Events®: A positive approach to Improving Patient Care
Thursday 22 October 
Hallam Conference Centre, London

National PROMs Summit 2015
Tuesday 1 December 
Colmore Gate, Birmingham

Measuring, Understanding and Acting on Patient Experience Insight
Friday 29 January 
Hallam Conference Centre, London


Download: Pauline Mountain MBE full presentation

23 September 2015

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