Nottinghamshire End of Life Care Newsletter April 2014 Celebrating living and dying well. YOU ONLY DIE ONCE Dying Matters Awareness Week 12 th – 16 th May 2014 The EOL Champions will be busy sharing their experience and knowledge with all their colleagues across Health and Social Care at exciting events held in their local area. Adrian Blundell, Consultant Geriatrician will be delivering an interactive presentation on frailty and end of life care. Please go and find out more by attending one of the sessions: 12 th May – County Hall West Bridgford 13 th May – Towers in Mansfied 16 th May - Newark Market Place and Beaumond House resource centre on Stodman Street from 10am to 3pm to raise public awareness of what is available to support local people at the end of their lives. A light lunch and refreshments will be provided. To attend the events on the 12 th or 13 th or to have a stand, please Halima Wilson on Please let us know what events you will be holding in your organisation and we can feature then in the next newsletter. NEW GSF Foundation Level for care homes (Group 2) Friday 13th June 2014 County Hall, West Bridgford 9.30am registration 10am to 4.30pm The 38 care homes who have undertaken the pilot GSF Foundation Level course are very pleased with how the course has helped them to improve their EOL practices and the positive impact it has had on the staff, relatives and residents. Come and sign up for the next course! The programme runs over a year and this is how it works: Two staff members authorised to implement changes in your care home attend Day 1, 2 and 3 of the programme They will have 3-4 months between each workshop to implement all their learning in your care home. EOL facilitators are available to help them. Your home will then undergo an evaluation process in order to assess whether the home is competent in EOL practices and receive a GSF Foundation Certificate The cost is only £100 per care home. Lunch, refreshments and course notes will be provided. The remainder of the cost will be funded by the LBR funding grant awarded to Optimum (formerly the Notts Partnership). For more details and to sign up for this course please contact Halima Wilson

Celebrating living and dying well Could your patients benefit from fantastic services at the John Eastwood Hospice and the Ceader House Bassetlaw Hospice? Health Partnerships, in partnership with the John Eastwood Hospice Trust provides fantastic facilities at the John Eastwood Hospice in Mansfield for patients with advanced cancer and other conditions requiring specialist palliative care. There are 12 inpatient beds which offer short stays for symptom control, respite care and final phase care. As well as 15 places available for day care which adds to the care given in the community and often allows the patient to remain at home, maximising the care and support received. If you see patients who you think would benefit from these services you can refer them by contacting the hospice directly on or asking a member of the clinical team looking after the person to refer them to the service. The Hospice team are continually looking at ways they can improve their services and there have been a few new developments lately: A new partnership has been developed between a clinical nurse specialist, community matrons and care homes in Newark which aims to improve the patient experience. The community matrons have been working with the staff at the care homes to identify patients who are nearing their end of life to make sure an advance care plan is put in place and working together to ensure their care needs are met. The Hospice has recently started running a group for long term condition patients. The aim of the group is to show patients how to live with their illness and how to live well. Patients get involved with activities such as arts, crafts, baking, and gardening. The first session has evaluated really well with one patient commented: “Since attending this hospice, my outlook has changed. I do more and I am beginning to get my life into some sort of order’ If you see any patients with a long term condition who you feel would benefit from this group please get in touch via the patient’s GP, community matron or specialist nurse who will complete the referral form Steph Pindor and Elise Adam have now come over to join the Specialist Palliative Care Team at John Eastwood Hospice. Their main responsibilities will be to ensure that general end of life care education opportunities are available to community based health and social care staff. CHP are currently putting together an education strategy and programme of training. Health Partnerships also provides services at The Ceader House Bassetlaw Hospice. The Hospice provides specialist care for patients who have been diagnosed with cancer or a progressive long term condition. It exists to support the patient and their families to achieve the best quality of life. The Hospice also includes brilliant inpatient and day care facilities. To refer patients to the Bassetlaw Hospice please telephone for further information.

Celebrating living and dying well Nottinghamshire Hospice at Home extends its boundaries In addition to a Day Therapy Unit Nottinghamshire Hospice provides palliative nursing care to adults living with a life limiting illness in their own home. We have both Qualified and Unqualified Nurses who are all experienced in palliative nursing care and are spread geographically across the County. We have a team of Co-Ordinators who take referrals and allocate patients from 8.30am – 10.30pm. As a service we aim to support patients and their families who wish to die at home do so by providing a nurse for 4-9 hours at a time. From January Home has extended its boundaries in order to work alongside the Community Nursing services in Ashfield, Mansfield and Rainworth District Nursing and End of Life team’s. This is a new initiative initially working as a pilot. The Evening and Night Nursing services are smaller in these areas than the City of Nottingham and so our nurses can provide valuable night nursing care. Not only does this mean greater availability of care for Patients and their Carers it also reduces the pressure on the Evening and Night Nurses allowing them to deal with others. Referrals are coming thorough and it’s expected that our service will continue and become available to a much wider group of people as a result. Excitingly this means our boundaries now extend from the South of Nottinghamshire encompassing East Leake, Kegworth, across throughout Rushcliffe, Broxtowe and Hucknall and Gedling. Providing the service across such a wide geographical area presents a challenge at times to deliver, but with recent recruitment taking place we have increased the number of Hospice at Home Nurses up to 50 and we are still recruiting! If you think you know someone who may benefit from the Home Service or a Day Therapy placement any healthcare professional can refer directly on or directly to Home on or discuss with their District Nurse Newark and Sherwood update by Dr Julie Barker We are currently developing our new strategy as a truly collaborative and patient-centred process that espouses best practice and aims to give confidence for our residents that people will be supported in all their health, psychosocial and spiritual needs at the end of their lives. EOL is a key priority for the CCG. As we roll out Care planning training (using the 'Year of Care' approach) we are including cancer in our list of other long term conditions and aiming to have a much more patient-centred approach. Where people are recognised to be reaching possibly the last year of life this approach will also help to facilitate effective advance care planning. We are delighted to report that as we further our Integrated GSF work, 14/15 of our GP practices have signed up for 'Going for Gold' higher level GSF training and will be working much more closely with care homes to support residents (as they also develop their support with GSF training and accreditation).

Celebrating living and dying well Where a person has a life limiting condition the process of diagnosis to admission can sometimes be as short as one week; no time at all to sit and think about the future. When a person living with a dementia who has been supported at home by family or friends for many years has an acute crisis; be it medical or psychological, and is taken into hospital, this can then lead to a lengthy process of medical and financial assessments, before a decision is made that they require full time nursing care. Many care home managers will have experienced the sensitivity required when showing someone your home for the first time. It is our responsibility to make that transition from home or hospital, carer to being cared for, as smooth as possible. For the person with a life limiting illness we try to establish how much they understand about their prognosis and whether (if indeed at all) they want to discuss it. The perception of death and dying is as unique as the individual. As one person living with us recently told me "I always knew I would die, but I never knew how. But now I have the answer to that and I will just get on with what life I have left". Her stoicism is respected by all those who care for her. Each day brings new challenges and we face them together. For the person living in the early stages of Dementia there can often be a huge sense of loss; of their own home and familiar surroundings, of their family or friends who have taken care of them 24 hours a day at home. Very rarely is it heard said that they have "come here to die". With the ethos of Landermeads being "Live well and Die well", we embrace life ensuring each day is full of meaningful occupation. In years gone by we would tell family and friends it could take about three weeks for a person to settle at Landermeads. Now it can take as little as three days. Dementia and End of life Care Karen Tidy and Maggie Rhodes at Landermeads Care Home What is your perception of End of Life care? This of course will depend on your personal life journey. Are you living with Cancer? Are you a carer? Have you recently been bereaved? Or have you just been diagnosed with Dementia? Karen Tidy and I are End of Life/Gold Standards co-ordinators at Landermeads Nursing Home. In 2013 we gained Beacon status in the Gold Standards Framework for nursing homes, and also become a level one Butterfly Home with Dementia Care Matters. Over the next year we will take you on a journey; we will take you over the "Bridge" of dementia, and share the views of people living with us, their families and those who work with us. When you talk to people about living in a nursing home it is not unusual to hear the responses "this will be my final home", or "why have I been put here?". Some people are relieved to be out of hospital others comment that "it's nice here" and "it was the company I missed, I was very lonely at home". Each person is unique; their life stories are rich with memories both good and bad, all are acknowledged. Often the person coming to live with us has not visited us prior to their admission. Friends and family members are those left with the onerous task of finding a nursing home. With little guidance from outside professionals, they rely on word of mouth, recommendations or often just chance

Celebrating living and dying well LIVING EULOGIES “Life does not end when we die. We live on in the memory of others.” Take charge of that part of your life, whilst you are able, and identify how you want your family, friends and neighbours to remember you. Begin with the end in mind. Nottinghamshire Registration Service provide an opportunity for your wishes to be recorded and preserved, so that your nearest and dearest are able hold the funeral ceremony they know you wanted. Having these detailed plans recorded ensures your family do not feel the pressure, after your passing, of having to make decisions in regard to your funeral ceremony, at such a difficult time for them. You may already have set your affairs in order. A Nottinghamshire Registration Service Funeral Ceremony Plan enables you to go that step further. Our experienced celebrants will work with you to compose a fitting eulogy and to plan the music, readings, prayers and hymns (if required) of your choice. Tell us about your life, your achievements, what lessons you have learnt and what you would wish to pass on to those you love, after you have died. Once your Funeral Ceremony Plan is completed to your satisfaction, the Registration Service will preserve its content at the Nottinghamshire Archive. Reference to the record will be made to ensure that upon your passing, it is readily accessible to your next of kin or someone designated by you to organise your funeral. For further information or to make an appointment for a visit from one of our experienced celebrants, please call or south.registration Life is for living and we reiterate to loved ones that they too are important; we are there for them too. Some family members find this hard to accept, they are experiencing grief and loss which is often more profound than those of the people living with us. The words "I feel as if I lost my husband/wife, mother/father a long time ago", "they are not the person they once were". Time is taken to talk about our ethos. For some people this compounds feelings of guilt "why did no one tell us about this before", "if only we had heard about this a long time ago, then maybe I would have coped better at home". We spend a lot of time reassuring them that they have done the absolute best they could and now it is our turn, which will allow them to spend quality time with those that they love, assuring them that if we connect with someone, acknowledge their feelings and step into their world, then their sense of loss may be eased. So what is the perception of other members of the multi-disciplinary team of End of Life care in a nursing home? We will explore those perceptions in the next issue of this news letter and will take you a little further over the "Bridge" of dementia as well as discussing the challenges we face in working in partnership with other essential services. We are keen to hear from any Registered Nurses looking to work in a Nursing Home with a unique ethos. Do "feelings matter most" to you? Are you looking to leave the NHS? Could Landermeads be the place where you can be yourself and not a number? For more information contact me Maggie Rhodes at Landermeads on or on my mobile We would love to hear from you. References Dementia Care Crossing the Bridge

Celebrating living and dying well Update on GSF Foundation Level for care homes (Group 1) The care homes are close to completing the GSF Foundation Level for care homes course. They are currently in the assessment phase which will help the national GSF team decide whether to award them the certificate. Calling all homecare providers!!! How to provide practical end of life care and support to your clients in their own homes This fully funded course was very successful and we will be running more sessions…. If you would like a session to be run in your organisation please contact Halima Wilson on Notts Dementia Update What will you be doing for Dementia Awareness Week is on 19 th – 22 nd May 2014? Dementia Friends - one hour information sessions for everyone, please contact if you would like us to run a session at your locality/organisation in Dementia Awareness week. The Dementia Community Roadshow is travelling all over the UK, providing free information and support to anyone with questions about dementia. The Roadshow has been funded by Tesco and over the course of three years we aim to reach over 100,000 people. The bus will be coming to County Hall in West Bridgford in June 2014.dementia Liverpool Care Pathway In July 2013 the independent review of the Liverpool Care Pathway (LCP) published its report ’More Care, Less Pathway’. Although it was recognised that, where the LCP was used properly, many people died peaceful and dignified deaths, it was also acknowledged that in some cases the LCP had not been implemented correctly or appropriately. This lead to much criticism in the press and the review panel recommended that the use of the LCP be phased out by the 14 th July 2014.’More Care, Less Pathway’ The Leadership Alliance for the Care of dying People will not be producing a replacement for the LCP but they have defined a set of outcomes in five priority areas which are outlined in their March 2014 statement, which can be accessed here: content/uploads/2014/03/lacdp-int-state- 20mar14.pdf The detailed wording of these guidelines and supporting documents are expected to be published by the Alliance in late spring/early summer. Updates will be circulated when received. Your comments please Please contact if you have any comments on this newsletter or would like to contribute to the next