Nottinghamshire End of Life Care Newsletter: Celebrating Living and Dying Well - Dec. 2014

1. Nottinghamshire End of Life Care Newsletter Celebrating living and dying well Dec 2014 EOLc training for Domiciliary Care Agencies In February this year the Eolc Trainers designed and piloted a new one day session for domiciliary care staff titled ‘Delivering Quality End of Life Care in Domiciliary Care’ The interactive session has been attended by over 150 domiciliary care staff and feedback has been positive. Skills for Care have also recently launched an Eolc training pack for domiciliary care staff Email: info@skillsforcare.org.uk or Tel 01132451716 for further details. County Health Partnerships Website The Heath Partnerships Learning and Development Eolc web page www.nottslandd.nhs.uk/end-of-life-care is currently being updated. The website advertises training, conferences, events, and the latest local and national Eolc news and updates. The existing ‘Community and Care Home Toolkits’ will shortly be replaced by one End of Life Care Toolkit containing resources and best practice guidance. This toolkit will help support staff plan and deliver care for people in their last months, weeks and days of life. The documents within the toolkit will support the 5 priorities for care identified by the Leadership Alliance for the Care of Dying People (LACDP). . National Skills Academy The National Skills Academy is ‘an employer-driven organisation that works to ensure high quality development for the support workforce and sustained investment in their skills and training’. Any organisation that provides health or care services within England as part of the NHS or in the independent or voluntary sectors is eligible to become an Employer Partner. If your organisation is eligible (it is free to become an Employer Partner) you can access training, workshops, webinars, events and resources. For further details contact the relevant health or social care website: https://www.nsasocialcare.co.uk/membership http://www.nsahealth.org.uk/ Training update The content and provision of Eolc training is also being reviewed by Health Partnerships. During this interim period it is advisable to keep checking the website to see current training or to contact John Eastwood Hospice or Steph Pindor Eolc Trainer stephanie.pindor@nottshc.nhs.uk to discuss any bespoke training requirements you may have. Those who saw the last Eolc newsletter will also be aware that the Eolc Trainers have moved from Learning & Development directorate to join the Specialist Palliative Care team based at John Eastwood Hospice, and that Elise Adam commenced a new role as a Huntington’s Disease Nurse Specialist for Nottingham City Care.

2. Celebrating living and dying well National Eolc update from Claire Henry recently appointed (CEO) National Council for Palliative Care (NCPC) At East Midlands Regional Facilitators Meeting November 20th. NHS England’s ACTIONS FOR END OF LIFE CARE 2014-2016 document was published November 14): http://www.england.nhs.uk/wp-content/uploads/2014/11/actions-eolc.pdf The foreword by Dr Bee Wee, national clinical director of Eolc states: This document – Actions for End of Life Care: 2014-16 – sets out NHS England’s commitments for adults and children. It is one component of a wider ambition to develop a vision for end of life care beyond 2015. This can only be achieved in partnership with all those in health and social care. The 2008 Strategy managed to reverse the upward trend of people dying in hospital. We now need to ensure that living and dying well is the focus of end of life care, wherever it occurs and is based on the House of Care Model (informed individuals, carers and compassionate communities) and Every Moment Counts (person centred co-ordinated care near the end of life). The document has been informed by comments and feedback from people who have experience of Eolc, including patients, carers, volunteers etc. Importantly, it signals a shift in focus from ‘place of death’ to the broader ‘experience’ of Eolc, enabling people to live and die well wherever they are. Some of the main focus/work currently being undertaken includes: 1. Currency work re Palliative Care Funding An NHS England Partnership Group reviewing the now out of date Eolc Strategy (2008), Claire Henry is leading a ‘National Choice Review’, consultations re what choices should be available at end of life which will be presented to the Minister. Over a 1000 responses have been collated from staff, organisations, and members of the public. Together with 7 other charities the NCPC is lobbying the government to ensure that the manifesto should include 24/7 services, care, free personal care for Eolc, effective co-ordination of care, increase in Eolc research and the importance of data collection to improve Eolc. Claire highlighted the ‘Public Health Eolc Toolkit’ which recommends use of the Charter for Compassionate Cities alongside the Dying Well Community Charter: :http://www.ncpc.org.uk/sites/default/files/Public_Health_Approaches_To_End_of_Life_Care_Toolkit_WEB.pdf :http://charterforcompassion.org/cities :http://www.ncpc.org.uk/sites/default/files/Dying_Well_Community_Charter.pdf 2. I didn’t want that DVD, re ACP, now another version for use within the Muslim Community. Hard copies are available at cost. 3. E-elca modules being updated in line with phased out LCP and the new Priorities for Care of the Dying Person.

3. Celebrating living and dying well • 4. NHS Improving Quality, the National Council for Palliative Care, Hospice UK and the Champions and Facilitators Network, hosted by the Centre for End of Life Studies (University of Hull), are holding five regional events around England in 2015. The free events aim to equip health and social care professionals with an interest in end of life care with the information and knowledge they need to work together in their local area, to improve the quality of care for people at the end of life, their families and carers. • South East - Crawley Charis Centre - 13th January (bookings now open!) • North East - Leeds Park Plaza - 10th February • East & West Midlands - Peterborough Holiday Inn West - 24th February • North West - Manchester Mechanics Centre - 3rd March • South West - Bristol BAWA Healthcare & Leisure - 17th March • For more information about the event, as well as booking details please go to: http://www.ncpc.org.uk/local2015 The events are an opportunity for staff to say what they would like the NCPC to do to support staff following the loss of the Neolcp/website. • Claire asked for feedback re the NHSIQ website where Eolc resources can still be accessed (though staff report not so easy to navigate) and the Eolc Facilitators and Champions website hosted by Hull University: http://www2.hull.ac.uk/fass/eolc.aspx,welcomes • Please send any comments /email or call if these are the forums staff would like or any alternatives that should be considered. Suggestions and comments re the hub should be sent directly to Anita Hayes who would welcome any thoughts on it. anita.hayes@NHSIQ.nhs.uk 5. Claire reminded the group re the benefits individuals/organisations gained if a member of NCPC. Claire also said there were more downloadable free resources on the website www.ncpc.org 6. Dying Matters Update: Shortly Bereavement Alliance and Cruse will be launching a new bereavement leaflet called ‘Being There’ following their bereavement campaign which scoped what support members of the public receive. The information has been compiled by bereaved people. Cruse will be offering an extended ‘helpline’ for individuals to access over the Christmas period. Dying Matters Events are being planned for next year -18-25 May 2015, ACP will be focus. Dying Matters are involved in ‘working with schools to introduce Death & Dying and Bereavement into the school curriculum’. Work also includes financial planning to help re funeral poverty. 7. Lincolnshire are developing ‘Neighbourhood Teams’, although in very early stages, working with the Hospices, community hospitals and Parish nurses this project is trying to address the difficulties rural communities face providing Eolc. 8. NCPC to work with TV producers more to help influence media coverage relating to Eolc, particularly working closer with local media. On 1st Dec a unique engagement event called ‘Let’s Talk About It’ took place in Northamptonshire supported by NCPC and Claire, with the aim of debating the issues, exploring the challenges and considering how we genuinely affect change and make ‘planning for and talking about death part of living’ http://dyingmatters.org/event/dying_lets_talk_about_it

4. Celebrating living and dying well Dementia Friendsis a national initiative that is being run by the Alzheimer's Society (external link) (external link). It's funded by the government, and aims to improve people's understanding of dementia and its effects. Alzheimer's Society is working with lots of volunteers and other organisations to achieve this goal. Because, together, we can create dementia friendly communities (external link) (external link). People with dementia sometimes need a helping hand to go about their daily lives and feel included in their local community. Dementia Friends is giving people an understanding of dementia and the small things they can do that can make a difference to people living with dementia - from helping someone find the right bus to spreading the word about dementia. The aim is to create a network of a million Dementia Friends across England by 2015. Friends' information sessions are run by Dementia Friends Champions to help you understand what it's like to live with dementia and the actions you can take. The sessions last between 45-60 mins. If you are interested in being a Dementia Friend, visit the Dementia Friends website to see where local sessions are being offered .Alternatively contact either Halima wilsonhalima.wilson@nottscc.gov.uk (Dementia Friends Champion) or Steph Pindor stephanie.pindor@nottshc.nhs.uk (Dementia Friends Champion) who may be able to provide a DF session. Thanks to Halima the DF champions for the East Midlands region held their meet first meeting in Nottingham with their regional support officer. This was a fantastic opportunity for regional champions to network together and receive updates and here about local initiatives such as the arts project that Kate Duncan is involved with, here is the link to their website: http://www.city-arts.org.uk/imagine/ In September this year the DF project was nominated for the third sector awards Third Sector Award. The Third Sector Awards feature a number of different awards for voluntary organisations across the UK, and Dementia Friends was shortlisted for the Big Impact Award.  This award recognises projects that have had a substantial impact on national life. The event was held in London at the Grand Connaught rooms and attended by Niki Crowther, DF Programme Manager, and accompanied by Hannah Piekarski, Regional Support Officer and Steph Pindor, DF Champion who were lucky enough to have their names pulled out of the hat to represent Regional Officers and DF Champions. Although the project was not one of the overall winners it was agreed by all that it was a great achievement just to get shortlisted and it was a memorable evening.

5. Celebrating living and dying well Feedback from the free East Midlands Dementia Day Friday 21st November 2014 This was an excellent local event attended by 300 delegates with highly acclaimed speakers Tom Dening, Professor of Dementia Research, University of Nottingham, discussed the diagnosis and trajectory of dementia. Adam Gordon, Consultant & Honorary Associate Professor in Medicine of Older People, Nottingham University Hospitals Trust thengave an overviewofa research study conducted in 227 Nottinghamshire Care homes. The study had a 72% recruitment rate and identified the co-morbidities individuals with a dementia diagnosis often have. Findings illustrated how care homes that have completed and implement the Gold Standards Framework programme reported improved communication with GP practices and are more able to identify individuals who are approaching Eol. Professor Graham Stokes, Director of Dementia Care, Bupa Care Services, highlighted that 90% of individuals living with dementia will experience challenging behaviour at some time. He defined ‘challenging behaviour’ as ‘behaviour that someone can’t cope with’. He felt there needed to be a transformation in how we understand behaviour in dementia that challenges others. Prof Graham shared examples of challenging behaviours and illustrated how a person centred approach and use of his assessment model, (Stokes 1996) could help. Purposeful activity and enhancing/adapting the environment are also beneficial. Dr Sarah Golderg, Associate Professor in Older Persons Care, University of Nottingham, presented the findings of a research project ‘Do joint medical mental health wards improve care?’ The randomised trial of over 600 patients, and 100s of hours of observation took place on B47 QMC. Owen Davies a Daily Mail reporter filmed for 8 days on the ward and produced a 20 min documentary called ‘Today is Monday’ which was aired on national TV in October 2014 and has received two awards http://blogs.nottingham.ac.uk/pressoffice/2014/10/22/plaudits-for-dementia-care-documentary/ Today is Monday – the evidence base behind a film about the care of people with dementia and delirium in hospital, Gladman JRF, Harwood RH, Foster PER, Goldberg S, Davies O, Schneider J, Chadborn N:   www.nottingham.ac.uk/mcop/documents/papers/issue13-mcop-issn2044-4230.pdf Jilly Polson, Dementia Lead Associate, Dementia Services Development Centre, University of Sterling,http://dementia.stir.ac.uk/ spoke about the training and resources the centre offers and how the Iris Murdoch Building at the University of Sterling http://dementia.stir.ac.uk/about-dsdc/iris-murdoch-building is the first public building in the UK designed around dementia services. Peter Passmore Professor of Ageing and Geriatric Medicine, Queens University Belfast discussed the treatment and management of pain in older patients. The importance of using the right/different words and pain assessment tools for people who have dementia was highlighted and how crucial exercise was, even if it was only mild walking. .

6. Celebrating living and dying well Karen Harrison Dening, Director of Admiral Nursing and Independent Dementia Nurse Consultant, and former Admiral Nurse spoke of the campaignto promote awareness, educationand support for carers. In 2014 NAPP undertook research involving 100 care homes, and how they identified pain for individuals who have dementia. The study highlighted there was often difficulties recognising pain, and this led to the development of the resource ‘See Change Think Pain Campaign’, using thePAIN acronym: • P: Pick Up on Mood • A: Assess Verbal Cues • I: Inspect Facial Expressions • N: Notice Body Language For further information access http://www.paincentrenapp.co.uk/ where the full study and resources can be found. Dr Margaret Elliott, Senior research associate with the Marie Curie and Palliative Care Research Unit, University College London, General Practitioner, Cambridge, closed the day with, Advance care planning and end of life care in dementia: challenges for practice. An overview of studies relating to symptom management, burden was given. The challenges identifying and managing Eolc in dementia where illustrated through the use of three case studies. At close of this excellent study day a reminder of the useful resources, training and events that can be accessed on the IDEA (Improving Dementia Education and Awareness) website, University of Nottingham, was given http://idea.nottingham.ac.uk .