CARDIFF & VALE UHB HEALTH BOARD END OF LIFE ANNUAL REPORT SEPTEMBER 2016

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1 CARDIFF & VALE UHB HEALTH BOARD END OF LIFE ANNUAL REPORT SEPTEMBER 2016 Page 1 of 47

2 1. EXECUTIVE SUMMARY Across Wales, for our population we want the best services possible for those at the end of life. Palliative and end of life care focuses on the person rather than the disease, and aims to ensure a high quality of life from diagnosis of a terminal illness onwards. Our vision for Wales for these services is that: People in Wales to have a healthy, realistic approach to dying, planning appropriately for the event People dying in Wales to have access to high quality care wherever they live and die whatever their underlying disease or disability, devoid of any prejudice in relation to their personal situation This is the summary of Cardiff & Vale health Board s progress on services for people at the end of their life. It presents an overview of how well the health board is performing in this area. It also highlights the work that the health board has undertaken over the past 12 months in developing our local needs assessment to review current service provision and to identify where service provision needs to change to meet demand. Overview of key achievements and progress over the past 12 months, a brief highlight of progress made and challenges still to be resolved etc KEY ACHIEVMENTS Hospice at Home team Education Improved Medicine Management Implementation of Care Decisions Tool Further improvements to rapid discharge process Improvement plan following co-productive workshops to improve services Canisc data usage across all providers Motor Neurone Disease and End-Stage Heart Failure clinics GTHC child bereavement service Excellent response times to high numbers of urgent assessments CHALLENGES Improve numbers on Palliative care register Improve opportunities for Advanced Care Planning in collaboration with other services Combined service data recording Develop Hospice at Home service capacity Local mapping of Bereavement services Improve AHP and mental health support to hospice inpatients 2. INTRODUCTION Page 2 of 47

3 The Cardiff and Vale UHB Delivery Plan for End of life Care was launched in The year has seen huge progress in all areas and the ongoing development of an improving service for patients in line with previous Delivery Plan objectives. The Health Board provides end of life care services across all care settings and has been committed to understanding and listening to patient/family experiences and to service improvements across the areas. End of life care is defined as life in the year immediately before death of an individual with advanced disease. Providing effective care reduces symptom burden and improves quality of life and dignity, but alongside this we need to ensure that the individual s wishes are respected particularly, addressing nothing about me without me. Improving knowledge, culture and attitudes has to be the high on our planning, monitoring and thinking. We have demonstrated that we are moving in this direction with our emphasis on improving opportunities to meet a person s preferred place of care. We have achieved this through our joint venture with Marie Curie to provide a hospice at home service which has reduced waiting times in hospital for care packages and has been successful in supporting patients to remain at home to die. The challenge is to address the need for increasing capacity and the unmet demand that has now become evident as this service has embedded. Improving knowledge of end of life care has been a priority area over the duration of the Delivery Plan there are highlights and successes that we would like to celebrate and particularly that we have educated 10% of our nursing workforce in end of life care to degree level module which is unique to us in CVUHB. There is still more ambition, with our Care Home staff and AHPs being encouraged to take the challenge. Our third sector partners (GTHC and MCC) have been exceptional in their provision of high quality services for palliative and end of life care. Their passion to deliver high quality patient focussed care has been demonstrated by their service improvements and their flexibility to work together. Their Carers Cafe, their bereavement services and outreach clinics are some areas where they demonstrate their diversity. Care of the dying is all our responsibilities and the UHB have engaged and committed to improvements through their cross-boundary workshop and through their 10 year strategy it is our ambition to encourage the momentum and passion of our professionals and support staff to make the last year of life a year of dignity and respect. In conjunction with this report the paediatric palliative care annual report has also been published, detailing progress in the care we provide for children. Page 3 of 47

4 3. THE IMPORTANCE OF END OF LIFE CARE There are clear reasons for end of life care remaining a top priority in Wales. Everybody is affected by the death of a family member or friend who has gone through a final phase of illness. Not only do people need rapid assessment and the best possible treatment, they also need ongoing support and information about choices when treatment may no longer be effective. The NHS must be able to explain clearly the options and their implications to an individual and their family at the end of life. Cardiff & Vale UHB (C&V UHB) is committed to taking the lead, working with its partners, to delivering this at every stage of the patient journey. The latest national End of Life Care Annual Report published in December 2015 stated: Around 32,000 people die in Wales each year, this equates to 87 people a day. More than half of these die in hospital. Of the 32,000 people who die each year over 20,000 (almost two-thirds) are aged 75 and over. The Office for National Statistics predicts that the number of deaths in Wales will increase by almost 10% to around 35,000 by The majority of deaths follow a period of chronic illness such as heart disease, cancer, stroke, chronic respiratory disease, neurological disease or dementia. About 39% of deaths occur in people s usual place of residence, either at home (22%) or in a nursing / care homes (17%). 56% of deaths occur in NHS hospitals. Investment over the past few years has allowed Wales to provide 7-day specialist services to ensure that there is a service across Wales available to give advice to those professionals caring for patients in their homes, in hospices and in hospitals across Wales on a 24/7 basis. A recent study 1 suggested that 75% of people dying have some form of palliative care need. This would mean that of the 32,000 people who die in Wales each year, about 24,000 will have palliative care needs. Page 4 of 47

5 Cardiff and Vale UHB have modelled community services around a locality model as outlined below in slides from the Locality workshop chaired by Dr Sharon Hopkins ( Executive Director of Public Health). It is envisaged this model will allow more effective use of resources and ensure equity of care and high quality care for all residents of Cardiff and Vale. Page 5 of 47

6 This not only has implications for the Community services but influences the service provision for all the HB. These challenges are highlighted in the C&V UHB Integrated Medium Term Plan : The growth in our local population - particularly in Cardiff - is being felt more significantly, in terms of both the total population expansion, and the increasing number of older people, many of whom will require support. Over the next three years, the population will rise by a further 4% which will impact on demand for our services. Some communities are growing at much faster rate including those seeking asylum; Our population continues to experience stark health inequalities which have not significantly reduced in recent years. A significant proportion of the population we serve live in the most deprived communities in Wales, and lifestyle factors contribute significantly to poor health and a 10 year gap in life expectancy; We continue to experience difficulties with patient flow out of hospital following an unplanned admission, and the reductions in some council services resulting from local authority budget proposals are likely to further impact adversely in some areas; We believe we are cross subsidising some of the specialist services we provide to a larger catchment population, impacting on services to our local population. We have commissioned a short piece of external work to assess this; The UHB has developed a robust strategy taking into consideration the above and other factors and this has extended to the provision of End of Life care services as the report will illustrate. Page 6 of 47

7 4. HOW WELL ARE WE DOING IN CARDIFF & VALE UNIVERSITY HEALTH BOARD ON END OF LIFE CARE? We are monitoring three high-level outcomes to track over time how well we are doing. These are: Whether people are cared for and die in their preferred place of care, whether that is at home, in hospital, a hospice or in a care home; The number of individuals who receive specialist palliative care prior to their death and recognising the inevitable closing of their life; and What individuals and their families say about the care they receive. Reducing the number of emergency admissions in the last year of life Outcome 1: The number of people dying in a preferred place of care. There is no one place that people should die, rather this should be based on people s preferences, the type of care they need and which location is best able to meet these. We want people in Wales to plan in advance to have as good a death as possible. Although most people say they would prefer to die at home we recognise that people may change their decisions when the event occurs. We want to ensure that appropriate support is in place so that individuals receive the best care to die at the right time, in the right place. Cardiff and Vale UHB have continued to work hard in 2015/16 to support patients in achieving their preferred place of care and death. Fig. 1 Percentage of Deaths by place of Occurrence 2014 The graph above shows compared to Wales less patients die in hospital although less are dying at home or in a care home. This may be because there are a greater number of hospice beds at Marie Curie Hospice compared to other areas of Wales and more choose to die there because of its local fine reputation and greater accessibility to hospice beds compared to other areas. Page 7 of 47

8 The above graph however looks at deaths from all causes, many of which may have been appropriately managed in hospital; but if you look specifically at those patients who are known to Community Palliative Care Teams and known to be in the latter stages of their lives, the data is different. Both community palliative care teams record 50-75% of such patients dying in their own home as a result of the additional planning and support that timely referral to palliative care allows. Fig.2 Percentage dying in usual place of residence Marie Curie Palliative community Rate per 100 pats Percentage of patient dying at usual place of residence Marie Curie Palliative Community from Jan 2015 to Jun 2016 Jan 2015 Feb 2015 Mar 2015 Apr 2015 May 2015 Jun 2015 Jul 2015 Aug 2015 Sep 2015 Oct 2015 Months Nov 2015 Dec 2015 Jan 2016 Feb 2016 Mar 2016 Apr 2016 May 2016 Jun 2016 Fig.3 Actual place of death of patients known to George Thomas hospice during 2016 Preferred Place of Care/Death (PPOC/D) Preferred place of care can change throughout a patient s life and as a service we need to be mindful of this and flexible to accommodate patients Page 8 of 47

9 wishes. Often recording of this information can be inaccurate but the information below from our Community Palliative care providers is accurate and shows over 70% of patients achieving their last stated PPOD. Data from Marie Curie Team Fig. 4 Proportion of patients achieving their stated preferred place of death ( Marie Curie community) Data from GTHC Team When an individual s preference for place of death is considered against where the individual subsequently dies the following bar chart is obtained, overall 76% of individual who expressed a preference about place of death achieved this described in figure 2 and the table following. Fig. 5 Fig. 4 Proportion of patients achieving their stated preferred place of death (George Thomas Hospice) Page 9 of 47

10 Table 1 Preferred place of death compared with actual place of death of the patient (2015 for patients cared for by GTHC) Preferred place of Patients expressing Patients the chosen location achieving the Option conversion death (n) preference (n) rate (%) Carer's home % Home/Hospice % Home/Hospital % Hospice % Hospice/Hospital % Hospital % Nursing Home % Nursing Home/Hospital % Own home % Prison % Residential home % Sheltered accommodation/sup ported living % Total: % Refused to discuss 57 Unknown = not asked for any reason 74 We do however recognise that for some patients particularly those who are in hospital, achieving PPOC/D has been limited by available staff to support them in the community. Recognising the need for additional resources to support this, the Health Board have worked collaboratively with Marie Curie to jointly fund an additional Hospice at Home Team to support community nursing staff which started in January The data shown in Section 5 of this report has already made an impact in six months and we would expect this to be reflected in the % of deaths in place of Occurrence data over the next year or so. Page 10 of 47

11 Palliative Care Register In addition the early recognition of these patients and inclusion on the Palliative Care register, MDT discussion of cases whilst they are in the community can prevent unnecessary admission to hospital and aid preemptive planning of services. This has been recognised as an area for further improvement and the numbers of patients on the register in C&VUHB are increasing by 0.02% in common with other HBs. This however is not always accurately reflected as a percentage of total list size as the birth rate is increasing in C&V as distinct from other areas of Wales. Table 2 Percentage of total list size at Birth rate All Wales 0.12% 0.15% 0.19% 0.22% 0.26% 0.28% ABMUHB 0.12% 0.13% 0.13% 0.16% 0.18% 0.21% ABUHB 0.15% 0.19% 0.27% 0.35% 0.41% 0.42% BCUHB 0.13% 0.17% 0.23% 0.25% 0.28% 0.29% C&VUHB 0.08% 0.09% 0.11% 0.13% 0.13% 0.15% CTUHB 0.07% 0.09% 0.12% 0.13% 0.17% 0.19% HDUHB 0.13% 0.17% 0.19% 0.25% 0.32% 0.34% PtHB 0.15% 0.17% 0.24% 0.35% 0.43% 0.40% Fig.6 Number of Patients recorded on QOF Register to The value of the MDT discussion and regular review is an integral part of the value of the palliative care register. The HB have sought to ensure that practices are regularly reviewing their patients rather than just keeping registers and the graph below shows that this priority has resulted in a year by year increasing in practices conducting MDT reviews which we know improves outcomes for patients and carers Page 11 of 47

12 Fig. 7 % of GP practices who carry out regular MDT reviews of patients on the palliative care register Outcome 2: The number of people receiving specialist palliative care prior to death It is important that people are able to have open and honest conversations about the end of their lives. This will require preparation and planning, and we need to be able to support people in these discussions in their communities, home, hospice or at hospital. Wherever possible, we want to avoid patients being unnecessarily admitted to hospital as an emergency at the end of their lives. Therefore, it is important to ensure that pain and conditions are wellmanaged to avoid any unnecessary distress and evidence suggests that timely referral to palliative care can benefit patients and reduce unnecessary admissions, and enable patients and carers to plan for the last period of their life. Fig. 8 Time from Referral to Specialist Palliative Care Referral to death Page 12 of 47

13 As we can see from the above graph the time from referral to death is in line with other areas in Wales. More specific data from GTHC records shows a mean of 181 days and median of 80 days from referral to death. However the graph below does not reflect current assessment practice as a data entry problem concerning the community team s entries has been found and correction to this will ensure that the continued excellent care delivered by our Community teams (George Thomas Hospice Care and Marie Curie) is more accurately recorded from April Fig. 9 Percentage of Specialist Care Assessments CANISC The excellent service provided by all teams is illustrated further by the excellent timely response to urgent referrals to the service is shown below. Even though the percentage of referrals that are urgent is substantially greater than the rest of Wales, the C&V UHB teams have still assessed those patients within 2 days in more than 80% of the time compared to the Welsh average of 70%. Page 13 of 47

14 Fig. 10 Urgent PC referral CANISC 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Urgent referral for uncontrolled symptoms Urgent referral first assessed within 2 days Urgent referral not assessed within 2 days All Wales C&VUHB The Audit data from GTHC shows that 96% of all urgent referrals were contacted within 2 days in 2015, 94% of all non-urgent referrals were contacted within 5 days of referral Further information will be shown in other sections concerning the outcome of those interventions in terms of improved symptom control and care planning Outcome 3: what people think about the care they or their family member receives? Putting the patient at the heart of care planning is central to the expectations within the Together for Health Delivering End of Life Care delivery plan. Patients and their families should feel well supported and informed, and able to cope with their illness. Feedback from patients, carers and families can highlight best practice or show where things could have been done better. For end of life care across Wales, experience of adult palliative/specialist palliative care is captured through IWantGreatCare which provides a transparent, realtime system to capture such feedback. Page 14 of 47

15 Fig. 11 I Want Great Care Data The graph above shows 93% of responders gave positive or perfect feedback 6% satisfactory and only 1% reported poor care which compares favourably with other areas of Wales We can see from the graph below that there continues to be a consistent pattern of positive feedback over the last 5 years but we recognise the limitations of this tool and are looking to gather feedback from many sources to develop a clearer picture and improve the experience of users Fig. 12 I Want Great Care Reviews Page 15 of 47

16 The qualitative data can often be very helpful and encouraging as seen below in these Quotes from iwantgreatcare Feedback for GTHC: I have no complaints whatsoever, the Palliative Care Team at St George Hospice, Whitchurch are so pleasurable to be with and help in every way. Their organisational skills and care are second to none. I hope this doesn t read too over the top because it is genuinely meant I am very pleased with the care from the Palliative Team, they are very helpful caring and supportive. I would recommend them to others. I don t give 10out of 10. I give 20 out of 20 Feedback for Hospital Palliative care team: No Negative feedback, nothing to improve as the care team have been fantastic In contrast the treatment in the Heath has been much better. They have been very proactive, we haven t had to chase anything up, we felt very supported and not stressed by the experience only met on 3 occasions, but they have come when promised and dealt with the issue. Have been very helpful Feedback from MCC: her nurse has been amazing in her care, kindness, empathy and understanding. She allowed mum to make her choices with dignity. This allowed mum to spend her final days in familiar surroundings being loved and cared for and to die peacefully and with dignity in the hospice he and I received such wonderful care and kindness by all members of medical, nursing, housekeeping and catering staff A calm patient and cheerful atmosphere prevailed at all times. I was taken aside and comforted no matter how busy the staff were. In addition GTHC distribute an annual satisfaction survey to all patients currently known in the service and to those carers of bereaved individuals. The analysis of which demonstrates the majority of individual are either satisfied with our service. see subsequent pie chart. Page 16 of 47

17 Fig.13 Overall patient/carer satisfaction with George Thomas Hospice services 2015 Outcome 4: reducing the number of emergency admissions for Palliative Care patients It is important that individuals have access to good quality care at the end of their lives and for many this may involve hospital admissions to ensure their condition is stabilised and they are comfortable. Systems and processes need to be in place to ensure that when the patient is stabilised they can return home with the right care and support in place. As previously mentioned a priority of C&VUHB has been to deliver care in the community where possible and in the person s preferred place of care and our 10 year Strategy "Shaping our Future aims to create structures and pathways to build on this further. It is very pleasing therefore to see from the graphs shown below that despite the increase in the ageing population there is a clear downward trend in the number of emergency admissions especially for those with cancer within the last year of life, the number of those admitted who die within 48 hours and in the number of bed days. Page 17 of 47

18 Fig.14 Reduction in the Number of Emergency Admissions in the Last Year of Death The graph below shows specifically that there is a reduction in the number of admissions in the last year of life compared to other areas of Wales which is more marked for cancer patients. We feel this is in part a reflection of the anticipatory advance care planning by community teams resulting from MDT working with GPS. The challenge is to replicate this trend for non cancer patients over the next few years. The joint clinics with heart failure, pulmonary fibrosis and MND teams which focus on improved symptom control and advance care planning can be expected to reduce unnecessary admissions and improve care further for these patients. Fig. 15 Average Number of Emergency Admissions per person in the Last Year of Life C&V - Cancer Wales - Cancer C&V - non cancer Wales - non cancer Page 18 of 47

19 Fig.16 Percentage of Deaths within 48 hours of Emergency Admission 2012/13 and 2013/14 The graph above shows despite a rising ageing population there has been a reduction in the deaths within 48 hours of admission which may reflect both improved emergency care but also better recognition of those patients who are dying and may prefer to stay at home for end of life care. Many of those over 75 will be Care Home Residents and there has been a reduction in the number of Emergency admissions from Care Homes. Last year all the Care Home Matrons were supported by the HB to complete the Cardiff University End of Life Care degree module and we believe this has resulted in greater confidence and skills enabling people to remain in their Care Home at the end of life if they choose. This year a cohort of Registered nurses for the Care Homes will complete the module and further strengthen and support high quality care in the Care Home sector. Fig.17 Average Number of Emergency Bed days per person in the last Year of Life Page 19 of 47

20 Although there is a slight downward trend in this pattern there is still progress to make with regard to speedier discharge and this remains a HB priority. We have already seen that the new Marie Curie Hospice at Home team supporting the District nursing team which started in Jan 2016 has had an impact on bed days and we would expect this and other HB initiatives to be improving the situation next year. As we can see from the graph below, in contrast to the All Wales trend, those patients admitted to hospital who are recognised as being palliative are now less likely to die in hospital than previously. This would support the above evidence suggesting better recognition of those who are most likely to benefit from admission to hospital and speedier discharge to those who wish to die outside of the acute hospital. Fig. 18 Percentage of Deaths to Number of Admissions for Palliative Code (Z515) to How does Cardiff & Vale University health board compare with others? The All-Wales annual report set the following priorities for health boards to develop during the next 12 months. These are: Encouraging more people to have open and honest conversations about their end of life preferences, supporting them to make a Will and share their final wishes with family and friends. Supporting GPs to ensure that patients are being identified earlier as being in their last year of life, and can therefore receive support from primary care teams. Older people and people with certain conditions are less likely to receive palliative care, yet this care can improve quality of life and reduce unplanned, emergency hospital admissions Ensuring that systems are in place that supports more people to be cared for and to die in the place of their choice. Further development of iwantgreatcare in Wales. Page 20 of 47

21 More information to be made available to help health and social care professionals and the public understand what palliative care is; when it can help and what the benefits are All relevant health and social care professionals, including care home workers, should be trained and supported to help people think about their care and develop advance care plans. As outlined above these priorities are intrinsic to the care delivered in C&VUHB and each clinical board has worked to these priorities. In addition a cross-cutting work stream has been established looking at EOLC to ensure collaborative working across the organisation, reduced duplication of work and identification of any areas where services can be enhanced that have not yet been addressed. This has enabled each clinical area to set priorities, enable joint working and ensure a equitable high standard of care is delivered across the HB. With regard to the above specific priorities in addition to all the information previously mentioned the following have been instituted or are planned areas for development: Public health are looking into ways to promote more public awareness of end of life choices and decisions including making Wills which we expect may result from discussions about the new Organ Donation bill. Public events such as this Marie Curie meeting at the Senydd encourage discussion locally as well as via social media encouraging the sharing of ideas and information Page 21 of 47

22 In addition Dr Mark Taubert (Consultant in palliative Medicine at VCC and UHL) recently provoked useful discussion concerning end of life care globally following the death of David Bowie which engaged many people who may not have previously considered such topics. We have also used areas of the hospitals and health centres to display information concerning palliative and end of life care and the recent display by MCC in UHL has promoted discussion and greater awareness together with the MacMillan centre in UHW concourse. The need to reach Care home residents is well recognised and GPs and Nurse Assessors are working with the Care Homes to help residents consider advance care planning The additional EOLC education delivered in The Cardiff University module has enabled Care Home matrons to support the above initiative which requires sensitive communication often over many conversations. We recognise the need to continue to improve the use of the Palliative Care register. As a consequence our GP Macmillan facilitator as part of his 2016/7 work programme is working with the GP Cluster leads to support and encourage through educational initiatives the increased use of the Palliative Care register and advance care planning As shown by some of the previous graphs those with a non-malignant lifelimiting condition are often less likely to be referred to receive appropriate palliative care and end of life care compared to those with cancer. There is clear evidence of the increasing incidence of cardiac failure and evidence that those patients have similar if not more palliative care needs. In order to address this inequality of care a parallel Heart Failure clinic has been established from April 2016 following WG funding for Cardiac services and Page 22 of 47

23 there are already signs of improved communication and closer working enabling patients to express wishes about their care. Likewise those patients with a diagnosis of Motor Neurone disease have long been recognised as a group with extensive palliative care needs who require specialist knowledge and support from the multidisciplinary team. A multidisciplinary clinic was established some years ago but this has been further developed and is now to be based in two locations (GTHC and MC Hospice day care centres). This will allow easier access for patients, and opportunity for patients to see a number of different health professionals in one clinic visit as well as ensuring greater communication between professionals and between professional and patients. The graphs below shows the caseload data for GTHC as well as the hospital team which shows about 25% of referrals are for patients with a non cancer diagnosis. Fig. 19 Number of malignant and non-malignant referrals to George Thomas hospice Jan 15-Apr 16 CARDIFF AND VALE UHB HOSPITAL PALLIATIVE CARE TEAM DATA Page 23 of 47

24 Fig.20 Referrals by Diagnosis Digestive organs (C15-26) 516 All other noncancer diagnoses 467 Respiratory & intrathoracic (C30-39) Ill defined, secondary, unspecified, including carcinomatosis (C76-80) Top 10 Primary diagnosis reasons Lymphoid, haematopoietic (C81-96) Urinary tract (C64-68) Male genital organs (C60-C63) Breast (C50) Chronic Female genital respiratory organs (C51-58) disease (J40-70) Data above from the hospital palliative care team demonstrates our commitment to non-cancer diagnosis who rate second highest in the primary reasons for referral, during Care Home Staff EOL Training A programme of educational support has been targeted at care home staff in order to help them build on their end of life care knowledge and skills. As part of this we have invested in supporting all CVUHB Care Home clinical leads to complete the Cardiff University End of Life degree module which is distance learning. As a consequence in we supported 18 lead professionals through the course with the aim of further developing leadership around end of life care in care homes. Below are some examples of the evaluation comments from participants I m better at talking to families about difficult things...even that their relative is dying I have leant lots and have already used some of my knowledge I am just more confident around people who are dying I m not so afraid Page 24 of 47

25 I now challenge GPs...I get them to prescribe medicines in advance just in case Further investment from Welsh Government has enabled us to support a further 27 places for the module and we have an uptake of 12 qualified nurses for We are encouraging other Care homes that have not had any staff complete the module to enrol for OUR APPROACH TO MANAGING END OF LIFE CARE In December 2015, we published our End of Life Delivery Plan refresh. The Plan sets out action to improve outcomes in the following key areas: Supporting living and dying well; informing and supporting patients to make arrangements in advance for the end of life Detecting and identifying patients early; people with palliative care needs are identified early to enable the best care to be planned in advance Delivering fast, effective care; People receive fast, effective personcentred care in order to maintain quality of life for as long as possible Reducing the distress of terminal illness for patients and their families; patients entering the terminal phase of their illness and their families feel well cared for Improving Information Targeting research Insert what progress has been made against each local priority over the last year. Include local priorities and what action and improvements have been made against these Following stakeholder sessions in 2015 we identified areas for service improvement and as a consequence a number of work streams are being taken forward and progress monitored through the local Palliative Care Reference Group. These include the following areas, Medicines Management: Areas for action/improvements: Anticipatory Prescribing Guidance this includes developing agreement around prescribing medications for the end of life care period, so for example, agreement around the timeliness of having mediations in a person s home in readiness for changes in their condition and managing the risk associated with this and also decisions about the information/explanation given to patients and families. Designated pharmacy support: Designated pharmacies have been allocated to each locality area to ensure that patients have access to key medications which are held as stock items. This list is regularly reviewed and updated. This reduces the distress Page 25 of 47

26 associated with not being able to obtain medications in a timely way. There is also an agreement with the hospital pharmacy to provide emergency supply of medication for EOLC 24/7 if the drugs cannot be sourced in the community. Opioid Prescribing: In an attempt to reduce and manage the risk around the prescribing of different opioids in the community - this work stream has made progress in obtaining professional agreement and clarity around the prescribing of a single opioid. Plans are in place to commence prescribing Morphine as the opioid of choice. This change will come into practice in the Autumn 2016 and requires multi-professional collaboration. Single Point of Referral We recognise that referral into Specialist Palliative Care can present some challenges in terms of navigating around the services we are committed to making improvements to this process. Consequently we have mapped the referral processes together and identified areas for development and improvement. Collaboration with the third sector providers has been crucial in taking this forward and they have been fully engaged. We are reviewing the options some of which may require new investment 1. Single hub referral point 2. Developing more transparent referral information, joint websites Single Assessment As many patients transfer to different providers of palliative care through hospital, hospice community and Cancer Centre there is duplication of information. We are conscious of the impact this has on patients and families in repeating similar assessments. As a consequence we are committed to reducing this where possible. Work has commenced on reviewing the different assessment processes with the aim of producing and sharing a single assessment based on Canisc to be used in all care settings. Maximising Resources Specialist palliative care is one service across the city and the Vale with three main providers and additional provision from the Velindre Cancer Centre. We are mapping the resources and identifying gaps and opportunities for development, and looking at new ways of working together where this is possible. Information sharing The group have identified the requirement for information sharing across the service model and identified actions to take this forward. Improvements have been made to the third sector access to timely information through for example, improved access to clinical portal. Better sharing and recording of information through CANISC remains an area of ongoing priority. Page 26 of 47

27 In delivering end of life care services, there are a number of service improvements that we have implemented locally that have had a real impact on patient care. Examples of this include: Marie Curie/CVUHB Hospice at Home Service: This new service in 2016 has resulted from a determination to further improve the hands-on care for patients in the last days and weeks of life. Reviews of services indicated we needed to focus on improvements in the timeliness of care and in the type of care provided to some of our most vulnerable patients. Marie Curie has been commissioned to provide a multi-visit service for end of life care which was an extension of the night service they were previously providing. This service now provides care based on individual need by a group of skilled Health Care Support Workers who have undergone extra End of Life training. This service operates in collaboration with the District Nurses as the key professional assessing and planning care. This new service started in Jan 2016 the team are working to full capacity, Table 3 Numbers of referrals from April 16 and the numbers of care episodes April May June Grand Total Total Patients Total Visits ,207 Visits per Patient Fig. 21 Marie Curie, time on caseload - length of time between first and last visit 16 Patients seen YTD by time on caseload (Length of time between first and last visit) A < 48 Hours B < 1 Week C < 2 Weeks D < 4 Weeks E < 8 Weeks F < 12 Weeks G < 26 Weeks H < 52 Weeks I 52+ Weeks Patients As the above graph demonstrates, some of the care episodes are over a number of hours up to a 26 week period. However, most of the episodes are focussed over a 2 week period demonstrating that we are utilising the team appropriately. Page 27 of 47

28 Below we can see that patients who are referred to and cared for by the team have been achieving their preferred place of death (PPOD) over the last few months. This meets with our expectations that we could better support people to remain at home where this is their preference Table 4 Patients receiving care in preferred place of death New Patients Seen Patients Discharged Patients with specific PPoD Existing Patients Seen Patient Deaths of whom, % achieving Preferred Place of Death % We know that despite the above achievements there is also an unmet need in as much as we are mostly running at full capacity with the team - this issue is being reviewed and we hope to look towards increasing the commitment to this service. 6. SUPPORTING LIVING AND DYING WELL Effective planning for the end of life can result in more efficient care. Individuals should be supported in planning for the end of life with the help of professionals and relatives. Services should be available in an integrated way within a range of community settings. Services should recognise children with a life limiting condition are a distinct group and care needs are often different from those of adults. We have four assurance measures in this area. They are: Percentage of deaths within 48 hours of emergency admission Number of places in care and nursing homes Emergency admissions for palliative care patients Delayed transfer of care per 10,000 population aged 75 years + The services to support the specific needs of children are discussed in the paediatric report and therefore not specifically discussed here. Progress against these assurance measures is highlighted below: Page 28 of 47

29 Emergency Admissions for Palliative Care Fig. 22 Referrals from other teams CVUHB Acute Oncology Service Data 2016 The above graph shows the numbers of cancer referrals through to Palliative Care via the Acute Oncology service per month approximately 90% of these acute referrals will come through emergency admissions. Many of these admissions will result from an acute deterioration the SPCT receive a prompt referral, which can result in being able to discharge the person back home or transfer to a hospice bed where indicated; where this is not possible early referral will result in earlier interventions and this is reflected on the graph below where length of stay for this patient group has reduced significantly. Fig.23 Length of stay CVUHB Acute Oncology Service Data 2016 Page 29 of 47

30 The table below demonstrates the efficiency of the referral process for Cancer patients to Specialist Palliative Care now that the Acute Oncology Service is in place and the opportunity for early interventions. This correlates with page 15 of this report where our response times to urgent referrals is higher than the national average. Table5. No. of patient referrals to specialist palliative care (from Emergency Unit) No. of patient referrals to SPCT (from Emergency Unit) March 2016 Referred same day 33 Referred within 24 hours 5 Referred within 48 hours 1 CVUHB Acute Oncology Service Data 2016: example of referral process Emergency Admissions for Palliative Care: From the cancer patient group identified in emergency admissions, there were 197 patients referred through to Specialist Palliative Care from Acute Oncology in a six month period Jan June 2016 There were only five deaths out of 197 (2.5%) within 24 hours of an acute emergency admission Fig.24 Re- referral to specialist palliative care by month /04 /05 /06 /07 /08 /09 /10 /11 /12 /01 /02 /03 /04 /05 /06 /07 /08 /09 /10 /11 /12 /01 /02 /03 Total Page 30 of 47

31 There are high numbers of re-referrals per month to SPC this mainly results from an acute event which has resulted in an emergency admission, for example, complex and intractable symptoms which cannot be managed at home or an oncological or medical emergency. CVUHB Care Homes There are approximately 27 Care Homes providing nursing care in the CVUHB area. Many of these will be supporting residents with end of life care needs. The Care Homes staff, GP s, Palliative Care CNS, Macmillan GP facilitator and Nurse Assessors all support the case load and the advanced care planning decisions and EOL educational needs of the Care home staff. All of the Care Homes have a named SPC Clinical Nurse Specialist attached to them who supports them with end of life care where specialist assessment and advice is needed. Access to Pallative Care consultant advice is available. Targeted education about End of Life Care has been a priority for Care Homes and with investment from CVUHB and from Welsh Government we have been able to fund 27 Care Home managers and matrons through the Cardiff University End of Life Care Degree Module with a further 27 places available for for additional staff. The module is focussed around increasing the confidence about end of life care and skills. Delayed Transfer of Care: Fig. 25 Distribution of length of care by discharge method day 2 to 7 days 8 to 14 days 15 to 28 days 29 to 42 days 43 to 84 days 85 to 180 days Died Discharged on clinical advice Page 31 of 47

32 The above graph represents the length of stay of Pallative Care patients discharged from secondary care The team have improved length of stay though improvements in processes and in greater collaboration with supporting teams. There are fewer delays for patients who meet the Fast Track Continuing Health Care criteria, with many patients who are in the last days of life now being transferred back home within a 24 hour period where this is their preference. Below is hospital data from the Palliative Occupational Therapist on the UHW site outlining an example of assessments and home visits many of which are patients who meet Fast Track Continuing Health Care and require rapid discharge home. Fig. 26 Palliative Care Occupational Therapy New Referrals Home Visits 7. DETECTING AND IDENTIFYING PATIENTS EARLY To ensure care planning is well co-ordinated and a person s individual needs are assessed and met, it is important to identify patients with changing care needs towards the end of life at an early stage. We have two assurance measures in this area. They are: Percentage of specialist palliative care assessments Number of DS1500 claimants (terminally ill benefits) Time from specialist palliative care referral to death As previously discussed the rapid response to urgent palliative care referrals and timely review of patients highlighted at palliative care meetings with GPs has allowed earlier identification of patients and pre-emptive planning which seems to be reducing the number of patients being admitted who are dying within 48 hours and reducing the number of admissions in the last year of life compared to other areas of Wales. Timely referral to palliative care comparable to other areas in Wales has also been shown in Section 4. Page 32 of 47

33 Part of this assessment involves consideration of the holistic needs of the patient and family which includes psychosocial and spiritual needs. The graph below shows patients are being reviewed and assisted to apply for such assistance although changes to the welfare system may account for the overall reduction seen more noticeably across all of Wales. Fig. 27 Number of DS1500 claimants (terminally ill) More detailed local data from GTHC shows that their welfare rights officer requested 182 DS1500 claims over the year, and updated 53 claims; the use of the DS1500 has enabled 59 blue care badges to be awarded without photographs being required. Many patients receive advice and support from Tenovus prior to referral to palliative care when attending VCC and our welfare support staff at GTHC and MCC liaise with them ensuring continuity of care and avoiding duplication. 8. DELIVERING FAST, EFFECTIVE CARE Individuals with end of life care needs require care in a variety of settings - home, hospices, nursing homes, hospitals, specialist centres. Services should be coordinated, with communication facilitating smooth transfer of care and information across boundaries. We have four assurance measures in this area. They are: Patient and carers feedback GP referrals for specialist palliative care Palliative register Advanced Care Planning In Section 4 the data supporting these measures was displayed and discussed and showed continual improvement and high standard of patient Page 33 of 47

34 and carer satisfaction but the need to continually review and improve is well recognised. The need to ensure good communication between services is paramount in C&V UHB given the number of palliative care service providers from both statutory and third sector. Our Clinical Reference group which meet 4 times a year together with the recent Clinical Improvement Programme which includes representation from all stakeholders ensures multiprofessional learning resulting from any clinical incidents or concerns. Patient and carer feedback The use of iwantgreatcare questionnaire has been extensively used throughout the area there are some limitations to this method of feedback especially at critical times in a patients illness and at time when there are often multiple providers and care givers involved. Despite this, the teams have been committed to its use where it is deemed appropriate and we have shown the data previously together with additional feedback gathered by GTHC. GP referrals for specialist palliative care The graph below would suggest that the GPs are referring very few patients to palliative care but it is important to highlight that this data only takes information from NHS outpatient referral data and referral to our community teams who are third sector providers are not recorded on this system. There are a few patient referred to clinics run by Dr Byrne and Dr Jefferson in UHL/UHW respectively but these are few as most patients are seen in the community or VCC which is more convenient for them. Fig. 28 GP referral data April March 2016 for Speciality Palliative Care When one looks at the data of caseload for GTHC shown below together with other data previously displayed for MCC and the Hospital team we see the Page 34 of 47

35 high level of activity by all teams and can be reassured that patients are receiving care appropriately even if it is not recorded on this database. Fig. 29 Case load of George Thomas Hospice Palliative Care Register Information concerning the use of the register was shown in section 4 and as discussed the need to increase its appropriate and effective use ids a priority for our Macmillan GP Facilitator this year. Advanced Care Planning We recognise this to be a key part of managing care. This is not solely the domain of palliative care however, we often support, lead and prompt these conversations along with GPs and other professionals. Raising the profile around ACPs in the community has been led by the Macmillan GP lead and this is a key objective for the post-holder in We recognise that other areas are increasing the focus on ACPs through key professionals such as Macmillan ACP co-coordinators and this may be an area for development in Fig. 30 % of patients (with referral to SPCT) with ACP record, , CANISC Page 35 of 47

36 9. REDUCING THE DISTRESS OF TERMINAL ILLNESS FOR THE PATIENT AND THEIR FAMILY Patients and their families need realistic choices for care together with assurances they will be fulfilled. The access to appropriate support must be the same wherever they choose to die. Good care will promote: Appropriate interventions when conditions are likely to respond to treatment Choice in place of care during a person s final illness Improved support to those bereaved We have three assurance measures in this area. They are: Feedback on Care Decisions/ Integrated Care Priorities for the last Days of Life Urgent palliative care referrals Respite care FEEDBACK ON CLINICAL CARE As previously mentioned the quality as much as the availability of care is important and we need to ensure high quality effective care is being delivered. There are many ways this may be measured, for example, GTHC use the validated Support Team Assessment Schedule (STAS) tool to record of the effectiveness of their interventions. Annual analysis suggests there is a significant decrease in intensity and range of symptoms between the first and final assessment, see graph below George Thomas Hospice Care Data Fig. 31 Mean STAS Scores of patient Page 36 of 47

37 In addition all teams participate in the All Wales Audit of End of life care using the Care Decisions Tool for end of life care which has replaced the Care Priorities previously used from April The graph below shows the Audit from the Care Priorities Audit 2015/16 which shows almost 100% or satisfactory or above care for C&V UHB. Fig. 32 WICP Case Review Sheet We do recognise however the limitations of this and continue to strive to improve care. Our HB lead Dr Jefferson is taking the lead on the All Wales End of Life Audit for acute hospitals to be conducted in 2016/7 and we hope this will help us to highlight areas of excellent as well as areas for improvement. Urgent PC Referrals In order to relieve the distress for patients and families a fast response service is required and as previously discussed, despite having the highest percentage of urgent referrals across Wales we respond to that need within 48 hours more than 80% of the time and local data shows that those not reviewed within 48 hours had chosen not to or couldn t be contacted. Page 37 of 47

38 Fig. 33 Urgent PC Referral Respite Care It is well recognised that there is need to support carers in addition to the patients and the strain of caring for a loved one is considerable. Various forms of respite care therefore need to be offered to assist the carers and this may involve an admission for the patient to a care home or arranging for a patient to attend a day centre or providing a sitter service at the home to allow the carer to go out. All of these services are available to carers in C&V area and we constantly look to see how this support may be improved. Below is a graph showing the respite service by care home type in our HB area although it is not possible to separate how many of these are directly for patients who are at the End of life. Fig. 34 Number of nights of respite care by care home type Page 38 of 47

39 The Marie Curie Helper Service was established in 2014 and offer valuable emotional and practical support to patients and families. Fully trained helper volunteers give at least 3 hours of their time and are matched with someone who they visit in their home. They may take the person out or stay with them at home or provide practical help (not nursing). There are currently 45 active volunteers, supporting 27 families. Marie Curie are continually recruiting new volunteers and have training booked for September and November 2016 together with a national recruitment campaign for Helper volunteers planned for September 2016 to February The Day Centres in GTHC and MCC provide respite for patients and carers as well as a supportive environment for patients to interact with others with facing similar issues. In addition the day centres provide therapies and symptom review and provide vital support and respite. George Thomas Hospice Care Day Centre Page 39 of 47

40 Newly refurbished Marie Curie Day Centre Carers Cafe: Many carers benefit from sharing their experiences with others in the same position and Marie Curie has established a twice monthly Carers Cafe in March Since its launch there has been 33 cafés with 350 visitors attending. Carers, patients and visiting family members come to the café to relax, meet others in a similar situation to themselves and be signposted to Page 40 of 47

41 support services. In April 2016 the Café moved to the newly refurbished Day Therapy Unit in the Hospice Bereavement Services The need for bereavement support is well recognised and GTHC have in house counselling services whilst MCC and the HB refer people to CRUSE services. The Patient Experience group of C&V UHB recognise that this is an area for further review and a scoping exercise is planned through the EOLB to review available services and identify areas of good practice and those requiring improvement We recognise the specific importance of bereavement support to families including children. When someone they love dies, children can find it difficult to cope. They often have confusing emotions and struggle to talk about how they are feeling. Without the right support, children can become withdrawn and develop problems like bed wetting and anxiety. George Thomas Hospice Care offers a free bereavement service for children affected by the death of a parent or grandparent. They help prepare them for the death before it happens and support them to come to terms with their feelings afterwards. Lily, aged 10, attends the children s bereavement group. With support she is learning to cope with her mum s death. She says Since coming to the group I no longer feel scared and I ve learned to be happy. This is an example of how children can express their emotions through artwork. Page 41 of 47

42 10. IMPROVING INFORMATION Information is very important to help patients, carers and professionals within the NHS for many reasons. In relation to end of life care, good quality, accurate information will support: Patients when making decisions about their care and treatment. Health professionals when making decisions about the clinical management of their patients. Service planners when considering the health needs of their local population and how well the NHS is operating. The public, the NHS, the third sector and Welsh Government in understanding the outcomes from good end of life care. Over the past 12 months Cardiff and Vale University Health Board has focused on several areas regarding end of life service provision. We believe that everyone should have equal access to all the care and support they need if they are living with a terminal illness, regardless of their condition, disability or religious preference. We are aware however that there are many groups within our HB area that find it difficult to access palliative care services for a variety of reasons and Marie Curie have therefore sought to clarify the needs more precisely in order to improve service provision for these vulnerable groups. To help achieve this aim Marie Curie have launched a 3-year project (Including Diverse Communities in End of Care Life), funded by the Big Lottery Fund, to look at the needs of people living with a terminal illness in Cardiff and the Vale of Glamorgan, in particular: people with dementia, people with learning disabilities and people with different religious views, including those with no religious beliefs. Through focus group and surveys we will look at the needs of in these groups who have a terminal illness and their families. The information gathered will be used to make recommendations to Marie Curie and the HB about the changes needed to service provision to improve access for these groups. To-date we have attended several events working closely with the local communities and organisations to address barriers. Within the hospice, through the holding of Dementia Friend Sessions, we now have 48 new Dementia Friends who now have more of an awareness of dementia. We are currently in the process of undertaking the Dementia friends recognition programme as an site i.e. the hospice and more recently we have held three focus groups to look at the needs that people with Dementia, Learning Difficulties and people with different religious views (including those with no religious beliefs). Page 42 of 47

43 11. TARGETING RESEARCH Research is crucial to ensuring individuals receive the best possible care. In addition, the NHS must respond to the latest research in the planning and delivery of its services. We need to ensure patients and their families are aware of the opportunity to participate in research which can lead to better outcomes for patients. The NHS must continue to promote the research base and ensure access to clinical trials, where appropriate. The number of patients recruited to participate in palliative care research studies is used as an assurance measure. Our strategic approach to enhancing patient access to pragmatic, patient focused research continues to centre around: i) Fostering a strong culture of research: Multi-professional research capacity building and integrating research as part of clinical practice across care settings are core objectives. The aim is to create a clinical environment capable of sustainably supporting research into complex interventions in the community and secondary care. Over the last 12 months we have: - developed a funded plan for protected research time for clinical nurse specialists in secondary care Page 43 of 47

44 - organised research-specific training for multi-professional staff - developed an App to support research governance in hospices - in conjunction with the Marie Curie Palliative Care Research Centre (MCPCRC), Cardiff University, provided methodology workshops to support clinicians to develop their research ideas - in conjunction with MCPCRC are providing mentorship and supervision for 5 more Cardiff based clinicians (medical, nursing, physiotherapy) to undertake the MSc in Palliative Medicine. Areas being researched are of direct importance to practice within the UHB including: management of malignant upper GI bleeds; rehabilitation following malignant spinal cord compression; experiences of A&E staff in managing patients with palliative care needs. ii) Working closely with Health and Care Research Wales and its infrastructure: As a clinical team across the UHB we continue to engage with HCRW infrastructure and support to maximise our capacity for research activities and to encourage translation of research into practice. We have: - arranged honorary contracts for HCRW research practitioners to support research in third sector settings - as part of our role within the Wales Cancer Research Centre have developed a rapid review service for clinicians/clinical teams to provide an overview of evidence for practice in areas of current importance. The Palliative Care Evidence Review Service (PaCERS) aims to provide evidence overviews quickly in response to requests from clinical services, allowing at pace change to practice or to support applications for service development. iii) Working closely with Cardiff and Vale R&D Department and research leaders to provide patients and families with access to a portfolio of national research studies: - in the last 12 months we have been recruiting to 4 palliative care studies across the UHB, two of which are community or hospice based and 3 of which are NIHR funded studies (ROCS, Optcare Neuro, HIDDEN). - We have 3 more NIHR studies in set up in areas of: home based family administration of medicine towards the end of life, prognostication in palliative care, cancer cachexia - We have contributed significantly to recruitment numbers in Wales and have provided the majority of CI and PI involvement. The attached graph demonstrates the year on year increase in patient recruitment to portfolio studies across Wales in the last 5 years. Page 44 of 47

45 Fig. 35 NISCHR Portfolio Palliative Care Studies 12. CONCLUSION AND FOCUS FOR THE NEXT 12 MONTHS AND BEYOND Cardiff & Vale Health Board will support the implementation of these priorities in the following ways: We are developing an improvement plan to the referral process into our specialist services to make this more explicit for referrers We have implemented our new partnership hospice at home service and are looking towards further development of this service in line with the positive outcomes We are maximising our resources to ensure co-production with all providers to achieve more effective/equitable delivery of patient care We are improving medicines management for palliative care to manage risk and variance We have made significant progress in implementation of the new Care Decisions Tool throughout the organisation and Care Homes to help ensure end of life care is well planned with full discussion with the patient and those important to them We are making progress on delivering and procuring educational programmes which aim to encourage improved communication by clinicians with patients and families regarding their wishes at the end of life We have concentrated on improving the number of patients included on the GP register and GP practices who carry out regular MDT case review of this patient group Page 45 of 47