Quality Account

2013-2014

LOROS Sites:

LOROS Hospice Groby Road Leicester LE3 9QE Tel: 0116 231 3771 Fax: 0116 232 0312

Website: www.loros.co.uk

Registered Charity No: 506120 Registered company in England and Wales: 1298456 CQC Provider ID: 1-101728486

This Quality Account was endorsed by the LOROS Board of Trustees

VISION (Our long term aspiration for our society)

Everyone with an incurable illness has the right to excellent care. This should value and respect their uniqueness and their own choices. People should be enabled to live and die with dignity and with appropriate and compassionate support for them and their loved ones.

MISSION

(Our goals and activities in working towards our Vision)

LOROS is a charity whose aim is to enhance the quality of life of adult patients with cancer, progressive neurological conditions and end-stage organ failure for whom curative treatment is no longer possible. Patients are treated at the hospice and in the community based upon clinical need, regardless of background and the ability to pay. LOROS specialises in holistic, multidisciplinary care, focused on the whole person and including family and carers. The care given takes into account the patients’ physical, psychological, social and spiritual needs as well as their own choices. Family members are supported in adjusting to loss and bereavement. LOROS contributes to the education and training of its own and other health and social care professionals and of volunteers. The charity is also committed to research in order to improve the understanding and practice of palliative care.

VALUES & BEHAVIOURS (How we will strive to be)

in our attitude and everything we do

on patients, families and carers whilst listening, learning and adapting to their diverse needs

in working together and with others

in providing care and responding sensitively to requests for support

within our organisation and by our community

PROFESSIONAL

FOCUSED

COLLABORATIVE

COMPASSIONATE

TRUSTED

“ Many thanks for your kind and loving support which has enriched our life” June 2013

“I sit here in a daze contemplating all that has happened to me and my family over the

last two months and all that I can think of is how on earth would we have coped without all of your consistent kindness, hard work, empathy, smiles, understanding,

patience and support" July 2013

“Being there was like a little piece of heaven” September 2013

“ Everyone from the primary care staff right the way down to the cleaners, were so friendly and helpful and always seemed to go that extra mile. We can’t praise you

enough” December 2013

“ I want to thank you wonderful people for all you did. This journey was not easy but

everyone did their best to make it as comfortable as possible”

February 2014

Contents

Part 1

Statement on Quality from Chief Executive 1

Part 2

Priorities for Improvement 2014/15 – Future Planning 2-4

Statements of Assurance from the Board 5

Review of Services (Mandatory Statement) 5

Participation in Clinical Audits (Mandatory Statement) 6-7

Research (Mandatory Statement) 8

Goals Agreed with Commissioners (Mandatory Statement) 9

What Others Say About Us (the Provider) (Mandatory Statement) 9-11

Data Quality (Mandatory Statement) 11

Information Governance Toolkit (Mandatory Statement) 11

Clinical Coding Error Rate 11

Part 3

Report on Review of Quality Performance 2013/14 12-21

Quality Overview - Review of Quality Performance 22-25

Clinical Dashboard 26-28

Clinical Data 29-32

Demonstrating Patient Outcomes 33

Feedback from Patients/Families 34-46

What Our Staff Say About the Organisation 47-48

The Board of Trustees Commitment to Quality 49

Glossary of Terms 50-51

Written statements by other bodies 52

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Part 1 Statement on Quality from the Chief Executive LOROS is an independent local charity providing palliative care and support to around 2,500 people each year across Leicester, Leicestershire and Rutland. Patients are offered our care services based upon clinical need and independent of gender, race, colour, creed or the ability to pay. In fact all of the care services are provided free of charge as a consequence of about 1/3 of the cost being funded by NHS and 2/3 from the generosity of the local community. LOROS has an excellent track record of delivering outstanding care over the last 29 years and a reputation as an extremely worthwhile and valued local charity. This is based upon a clear purpose and focus and an enduring commitment to quality. LOROS staff and volunteers are passionate about their roles and the organisation and seek constantly to capture and act on feedback to improve further. There are specific examples of commitment to such improvements in quality in this document particularly in terms of patient safety, outcome measures and enhancing outreach services. LOROS is actively engaged with the NHS and other stakeholders in determining how the quality of End of Life Care can be developed in the future. A large number of people have contributed to the creation of this Quality Account, most notably the Director of Care Services and Clinical Governance/Patient Experience Lead. The LOROS Board of Trustees reviewed and approved this Quality Account in June 2014. To the best of my knowledge, the information contained in this document is accurate.

Simon Proffitt Chief Executive June 2014

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Part 2 Priorities for Improvement 2014/15 – Future Planning The hospice has a number of on-going initiatives to enable us to offer a more comprehensive service to the local community, whilst working within the limitations of the current financial constraints. All plans for improvement have been influenced by patient and carer feedback. The key priorities we have selected have been discussed with the Senior Management Team and Board of Trustees. These will impact directly on the following domains of quality: clinical effectiveness, patient experience and patient safety. Quality Account – Priorities for 2014/15 Patient Safety Priority 1 – Patient Safety Metrics Three key aspects of patient safety are falls, medication errors and pressure ulcers. There is a drive nationally to make improvements in all of these areas. LOROS is committed to ensuring this happens to provide re-assurance to our patients, the Care Quality Commission (CQC) and the local commissioners (CCGs.) We have implemented a number of initiatives in the last few years to help improve care in these areas including the appointment of a Tissue Viability Lead Nurse and the introduction of non-interrupted medication rounds. This year we are planning to revise our nursing care plan which incorporates a falls assessment to ensure a robust Multi-Disciplinary Team (MDT) approach, which will help minimise the risk of falls. To support us in on-going improvement in these areas, LOROS will participate in a national benchmarking patient safety metrics project coordinated by Help the Hospices, sharing data on falls, pressure ulcers and medication errors. Approximately 100 hospices are taking part, helping to build national intelligence in relation to patient safety issues and enabling the sharing of good practice and service improvement initiatives. This will be invaluable for LOROS enabling us to review our practices against other units, identifying where we are performing well and also where further improvements are possible. Outcomes should include a reduction in the number of incidents and on-going improvements in service delivery. Clinical Effectiveness Priority 2 – Introducing robust patient outcome measurement Being able to demonstrate tangible outcomes for patients in relation to the impact LOROS services has on their care, continues to be a challenge. It is important that

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whatever tool is used it can be easily integrated into clinical practice and that health professionals use the data to improve patient care. It therefore needs to be part of the assessment and on-going care planning process. The Integrated Palliative Outcome Scale (IPOS) is a validated tool that has been used in a number of palliative care services to capture the outcomes for patients. LOROS is implementing the tool initially in the Day Therapy service with a view to rolling it out to other care services following an evaluation after three months. This information will be used alongside activity and patient experience data to give a comprehensive overview of the standard of care provided at the hospice and again identify areas that need development or investment. Priority 3 - Care during the last days of life – moving on from the LCP Following the recent national independent review of the Liverpool Care Pathway, the LCP is being phased out in all care settings across the country by July 2014. In line with the recommendations LOROS is no longer using the LCP. When it is recognised that a patient is dying this is now being referred to as ‘the Dying Phase’ which is in line with the four phases of end of life care identified during the palliative care funding review – stable, unstable, deteriorating and dying. The Leadership Alliance for the Care of Dying People, who have the responsibility for taking forward the recommendations from the review, stated in January 2014 that there would not be a replacement for the LCP but that there will be some guiding principles that all care providers should follow. This will support consistency in approach and ensure that the way in which a dying person is cared for, including the goals and key aspects of their care, is focussed around the individual, in line with their needs and preferences and developed and delivered in consultation with them, wherever possible, and/or their family. LOROS will provide care during the dying phase in line with these guiding principles (as is current best practice) and will not have a separate end of life plan or pathway. LOROS is working closely with other key providers, predominately University Hospitals of Leicester (UHL) and Leicestershire Partnership Trust (LPT) to try and develop as consistent approach as possible during this transition. Once the final guiding principles are published it is envisaged that providers will continue to work collaboratively to ensure patients receive consistent, high quality end of life care irrespective of the care setting. Nationally the CQC will focus more on end of life care during 2014/15 and NICE (National Institute for Health and Care Excellence) are planning on developing new guidelines on the care of dying adults which are expected to be published in 2016. This should result in greater clarity for care providers in the future and a mechanism for demonstrating clear outcomes in relation to end of life. During the interim LOROS will liaise closely with the Clinical Commissioning Groups to ensure that the hospice is able to provide appropriate data to demonstrate the provision of high quality end of life care.

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Patient Experience Priority 4 – Developing more outward facing service to meet the needs of more patients, families and carers LOROS currently cares for approximately 2,500 patients per year. A great deal of care provision is delivered at the hospice itself and to increase our reach in the coming year there is a drive to increase the breadth and scope of service provision. We have recently reviewed our Family Support Service and to enable it to grow and develop over the coming years the service has been reconfigured to separate home visiting and bereavement services. The home visiting service will be supported by an increased number of volunteers to enable us to deliver services to a much greater number of patients. Initial ideas for service development within home visiting include helping to support patients in the last few days of life within their own homes, by providing reassurance and support to family members and providing practical support for carers such as shopping or walking the dog as these are often things that make a big difference to families but that other agencies no longer offer. Within bereavement services we are planning to establish bereavement support groups, both at the hospice and out in local communities. These will provide much needed support for a greater number of people including the relatives of patients who have died at home or in another health care setting such as UHL. There are a number of out-reach services that LOROS would like to offer to patients who may not wish to come to the hospice and/or who would prefer to access services in their local community. These may include complementary therapy, lymphoedema and patient information and/or welfare advice. To help deliver these services we are trying to secure funding to establish a mobile bus which can be taken to a number of different venues. We are also hoping to again work in partnership with Macmillan Cancer Support in the coming year to develop a project to help improve the access and care of patients who may not traditionally receive palliative care services such as prisoners, travellers and the homeless. We would also like to continue increasing the support we provide to local BME communities. If we are successful in establishing some of these services, the positive impact for patients would include greater and easier access to our services and improved care, particularly for the under-represented patients from these groups.

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Statements of Assurance from the Board The following are a series of statements that all providers must include in their Quality Account. Many of these statements are not directly applicable to palliative care providers. Please note that the wording of these statements is prescribed. Review of Services (Mandatory Statement) During 2013/14, LOROS has provided for the NHS and the local community:

In-patient Unit

Day Therapy Service Outpatients and domiciliary palliative medicine consultant visits Community palliative care nurse specialist service Home visiting Counselling Lymphoedema Clinic service (cancer and non-cancer)

Complementary therapy Education service

NB – the hospice at home service is not provided by LOROS LOROS has reviewed all of the data available to them on the quality of care in all of these services (NHS services). The income generated by the NHS services reviewed in 2013/14 represents one third of the total expenditure incurred in the provision of services by LOROS for the reporting period 2013/14.

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Participation in Clinical Audits (Mandatory Statement) During the period 2013/14 there have been no national clinical audits and no confidential enquiries relating to the services that LOROS provides. During this period LOROS did not participate in any national clinical audits and national confidential enquiries. Medication related audit results are reported to the Therapeutic Committee and all others are reported to the Clinical Governance Steering Group. The Board of Trustees receive regular audit reports identifying areas for improvement, the number of audits showing full compliance and examples of care delivery which has been improved as a consequence of undertaking clinical audits. In addition, an annual clinical audit report is produced in March of each year outlining all activity for the twelve month period. 132 standard clinical audits were undertaken in the period 2013 – 2014, 74 of these showed full compliance. 3 clinical interest audits were completed, these did not show full compliance, however identified recommendations were made and acted upon by the appropriate hospice teams to improve care delivery. Audit examples of good practice identified:

04/07/2013 Help the Hospices medicines management – controlled

drugs: A self-assessment tool for the Accountable Officer

100% compliance achieved in the following areas: Subtopic 1 – The appointment of the Accountable Officer Subtopic 2 – Role and responsibilities of the Accountable Officer Subtopic 3 – Annual review by the Accountable Officer to ensure compliance with the relevant legislation, regulations, guidelines and policies Subtopic 4 – Continuous quality monitoring: Ongoing review to ensure compliance with the relevant legislation, regulations, guidelines and policies

12/11/2013 Consent to Acupuncture Treatment (Physiotherapy Team)

Results: 15 patients’ computerised records examined retrospectively for satisfactory completion of consent form for acupuncture. 100% compliance.

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02/12/2014 Respect and dignity patient questionnaire (Main Ward) - Attitudes and behaviour - Personal world and personal identity

Results: 15 patients’ computerised records examined retrospectively for satisfactory completion of consent form for acupuncture. 100% compliance.

Examples of improvement made as a result of audit processes:

13/05/2013 - Catheter insertion – Department of Health urinary

catheter care bundle

100% compliance achieved. April 2013 – 86% compliance achieved. Training has been introduced and poster presentations organised for display in the ward area as a consequence of audit results.

27/05/2014 5 moments of hand hygiene (Main Ward)

90.4% compliance achieved. Previous compliance results:

April 2013 – 82% March 2013 – 78% February 2013 – 74% January 2013 – 72%

There has been a steady improvement in compliance due to actions taken as a consequence of audit results. Staff were challenged regarding poor practice as the time of the audit.

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Research (Mandatory Statement) LOROS is actively developing opportunities to question and challenge the provision of palliative care from its broadest perspective. Research in 2013/14 has included:

IMPACT (Improving Palliative Care for Tomorrow) – Researching the impact of a Foundation Degree in palliative and supportive care.

Withdrawal of non-invasive ventilation in people with Motor Neurone Disease (MND) – from the doctors’ perspective.

How nurses working within an inpatient adult palliative care unit identify children, aged 18 years and under, in need of additional support when they have a parent who is expected to die.

Decision making by surgeons and anaesthetists in the care of the frail elderly. Developing a protocol for video based research around doctor-patient

interactions Research has been disseminated through presentations at both National and International Conferences; including the October 2013 Help the Hospices conference, in Bournemouth; March 2014 Palliative Care Congress, in Harrogate; and the Motor Neurone Disease Association’s International Symposium on ALS (Amyotrophic lateral sclerosis)/MND in December 2013, which was held in Milan. LOROS has adopted the Research Governance Framework for the NHS and this is overseen by the Hospice Education and Research Committee. Future research continues to be focussed on the following areas:

1. Innovative services in palliative care 2. Diversity and disadvantage 3. Education including communication skills 4. Lymphoedema 5. End of life decision making and advance care planning

Research participant figures:

Non-Invasive Ventilation (NIV) Study: Phase II = 46 (All of whom were a mix of healthcare professionals and bereaved carers, most of whom were staff or participants not related to LOROS)

How do nurses working within an inpatient adult palliative care unit identify children, aged 18 years and under, in need of additional support when they have a parent who is expected to die? = 14 (Healthcare professionals)

VerDIs (Phase I): Video analysis of patient doctor consultations = 14 patients/carers, 16 staff

Excellence in Practice: a comparison of hospice nurses' perspectives of care of the dying patient in the UK and North America = 3 LOROS staff

Patient/carer participants = 30

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Healthcare Professionals = 63 Professor Christina Faull, Consultant in Palliative Medicine and lead for Research at LOROS, was awarded an honorary Professorship by De Montfort University in September 2013. Professor Faull also Co-Chairs the DMU and LOROS Centre for the Promotion of Excellence in Palliative Care (CPEP). Goals Agreed with Commissioners (Mandatory Statement) LOROS’ NHS income in 2013/14 was not conditional on achieving quality improvement and innovation goals through the Commissioning for Quality and Innovation (CQUIN) Payment Framework, because LOROS is not contractually part of the CQUIN scheme. We are awaiting revision of our quality schedule and key performance indicators for the period 2014/15 to be agreed by the West Leicester Clinical Commissioning Group. What Others Say About Us (the Provider) (Mandatory Statement) LOROS is required to register with the Care Quality Commission (CQC) and its current registration is as a provider of the following regulated activities: The Leicestershire & Rutland Organisation for the Relief of Suffering has the following conditions of registration that apply: 1. Diagnostic screening procedures

The Registered Provider must ensure that the regulated activity, diagnostic and screening procedures is managed by an individual who is registered as a manager in respect of the activity, as carried on at or from the locations LOROS The Leicestershire and Rutland Hospice.

2. Treatment of disease, disorder or injury The Registered Provider must ensure that the regulated activity treatment of disease, disorder or injury is managed by an individual who is registered as a manager in respect of the activity, as carried on at or from the locations LOROS The Leicestershire & Rutland Hospice.

Additional conditions that apply at LOROS Hospice: 1. The Registered Provider must only accommodate a maximum of 32 service users

at LOROS The Leicestershire & Rutland Hospice.

The Care Quality Commission has not taken enforcement action against LOROS during the period 2013/14.

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The CQC are currently making radical changes to the way they inspect health and social care services (including hospices) to make sure they provide people with safe, effective, compassionate and high quality care. LOROS is fully engaged with these change processes and welcomes emerging opportunities for further development and improvement of services. The Care Quality Commission has undertaken an unannounced visit/inspection on August 2013. The following standards were inspected and found to be fully compliant

- Meeting nutritional needs - Safeguarding people who use services from abuse - Supporting workers - Assessing and monitoring the quality of service provision

CQC visit August 2013 – LOROS What people told us and what we found We spoke with three people who use the service and asked them for their views about the care, treatment and support they receive. People's comments included: "Brilliant care, I am fully aware of my care package." "My wife is an absolutely wonderful woman but it would have been difficult without the help of these people they're absolutely wonderful." "They tell the family everything about my treatment." (The person told us this information had been shared with their consent). "The care is excellent; they explain everything that's going on." "Amazed with the care at LOROS." (Leicestershire and Rutland Organisation for the Relief of Suffering). People we spoke with were happy with the meals provided and told us they received the support they needed, which included support where they were unable to eat or drink and received nutrition in a different way. People's comments included: "There's a good choice and it's always really tasty." "The food is excellent, you get asked what you like and the choices are excellent. The drinks trolley regularly comes round and there's always a jug of water by your bed." Staff we spoke with told us they receive the support they need from within their individual teams and through the provider. Staff told us that support came in many forms which included clinical supervision and annual appraisals. The provider encouraged staff to access services to support them which included attending reflexology sessions as well as being given information about external counselling services. Staff we spoke with told us they have good access to training and developmental sessions.

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People who use the service are asked for their views about the service they receive within days of their admission to the hospice. In addition, annual surveys are also complete as part of the annual quality assurance process in place at the service. Groups involving people who use the service had been set up and met regularly to talk about their views and experiences and we saw that the outcome of these meetings was used to develop the services provided by LOROS. The provider had a robust quality assurance system in place which produced an annual report which is available on the LOROS website. Data Quality (Mandatory Statement) LOROS did not submit records during 2013/14 to the Secondary Users Service for inclusion in the Hospital Episode Statistics which are included in the latest published data. Information Governance (IG) Toolkit (Mandatory Statement) LOROS has developed all relevant documentation and undertaken the appropriate staff training to achieve level 2 compliance of the Connecting for Health’s IG Toolkit assessment. This compliance provides assurance to our patients and the general public that personal data is being dealt with safely and securely. The Hospices Information Governance Assessment Report Version 11 overall score for 1st April 2013 – 31st March 2014 was 66% and was graded Satisfactory – Green colour. An Information Governance group has been established to continually monitor and review IG arrangements across the organisation and is accountable to the Senior Management Team. Clinical Coding Error Rate LOROS was not subject to the Payment by Results clinical coding audit during the period 2013/14 by the Audit Commission.

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Part 3 Report on Review of Quality Performance 2013/14 Clinical Effectiveness Priority 1 – Day Therapy The pilot Day Therapy service is now running successfully at the Hospice and Loughborough Hospital. The pilot will run for an initial period of 12 months. A formal evaluation will then take place to agree the longer term service model. Our plans for the forthcoming year are to continually monitor, evaluate and adapt provision as appropriate to meet the needs of patients referred to the service. This will be achieved by analysing activity data and from patient, staff and volunteer feedback. There are a number of different services that patients can access including assessments by an occupational therapist and/or physiotherapist, complementary therapy and creative therapy in addition to assessments and support from medical and nursing staff. We are planning to expand our partnership working with UHL and Macmillan Cancer Support in the establishment of a breathlessness self-management programme for patients. During this period we will also explore further opportunities of partnership working with other charities such as Coping with Cancer. Plans for possible future purpose built day therapy facilities at the hospice site will be developed based upon the evaluation of the pilot service and the needs of patients attending day therapy. The possibility of locating a satellite unit in another area of LLR will also be investigated. Update Throughout the year we have continued to evaluate services and adapted what we are offering in response to feedback from patients. Providing a Day Therapy service at the ‘spoke’ in Loughborough proved challenging as the facilities at Loughborough did not lend themselves to providing an equitable service. Following a review of the pilot service in October 2013 the decision was made to cease the service at the spoke. Day Therapy at Loughborough ceased on 6th December 2013. All patients from Loughborough have transferred to Day Therapy at LOROS which commenced from Friday 13th December. Feedback from patients regarding the service continues to be positive. To meet patient demand, the number of days the service is available at the hospice increased from 3 days to 4 days in January 2014. Transport continues to be provided for those patients who require it. We have found that we are receiving more referrals to Day Therapy for people who are very dependant with increasingly complex needs. This has led to challenges in the current facilities to provide high quality care for these patients so in some cases we have had to discharge these patients.

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The needs of these patients have been considered in planning the possible future site developments in the Day therapy area. These plans are progressing with the input of staff and patients and a decision as to whether the developments will go ahead is expected later this year. The breathlessness self-management programme which was piloted in partnership with Macmillan and UHL was very well evaluated by the patients who attended but unfortunately due to insufficient numbers of patients attending, it was not viable to continue. A different model of providing support to breathless patients is currently being piloted in an outpatient clinic at LOROS where patients can see a Consultant and/or a Physiotherapist or Occupational therapist. We are committed to the idea of providing ‘care closer to home’ and following the lessons learnt at Loughborough we hope to pursue our partnership working with Macmillan and community services to pilot some ‘outreach’ services in the community. We will be investigating possible models for this over the coming months. We have continued to maintain links with Coping with Cancer and still hope to work in partnership with them in the future. We are currently seeking the views of patients and referrers on planning different models of Day Therapy for a 5th day for younger and/or less dependent patients such as self-management programmes, support groups, well-being sessions. We are furthering links with Rainbows Hospice to see how we can help to support the young adults who will be discharged from their service. Key outcomes achieved:

The number of days the service is available at LOROS has increased to 4. Fortnightly MDT meetings involving Day Therapy nurses, coordinator, Doctors,

Physiotherapists, Occupational therapists, and Chaplaincy are now embedded into practice to review and plan the patients’ care.

In patients are able to attend Day therapy if appropriate while they are staying on the ward to introduce Day therapy services to them.

As the Day therapy service is now on site at the hospice, there is better integration with other hospice services for example a representative from the Day therapy team attends the Motor neurone disease MDT meetings and the Physiotherapists/Occupational therapists are able to take part in the daily care planning meetings in Day Therapy.

The introduction of ‘Wellbeing’ sessions supported by Clinique when volunteers run sessions to help patients with skin care and make up.

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Priority 2 – Education Provision LOROS continues to develop a reputation for innovative and high quality education in palliative and end of life care, across the region and also nationally, with provision ranging from half day workshops to masters programmes. A palliative care foundation degree has also been running for a number of years. The programmes are both taught and practice development within the workplace and the range and scope of provision has expanded into a number of health and social care settings. During 2012/2013 over 3000 individuals accessed the LOROS education programme, in part supported by End of Life Care Funding. The LOROS education strategy has been in place for one year and a recent review identifies success in achieving a number of the first year milestones. The focus for the next year will be to diversify income streams, extend and enhance provision further and refine our marketing approaches. The recently appointed Education Business Manager is an integral role in driving forward the strategy in relation to key business processes. The LOROS education department is now responsible for internal training and development of 300 staff and 1,000 regular volunteers. A recent review of training has been carried out with a refined approach to mandatory and essential for role training. This year will focus on developing e-learning materials to support internal training and also more effectively monitor engagement levels and the impact on clinical practice. We will also be working with key colleagues who manage volunteers across the organisation to ensure training and development for that essential part of the workforce is fit for purpose. CPEP (Centre for the Promotion of Excellence in Palliative Care) a collaboration between LOROS and De Montfort University, has just celebrated its first birthday. There have been a number of very successful outcomes which have just been detailed in the first annual report and include:

- Public awareness raising, including the launch event, Care and Compassion event, and specialist palliative care practitioner open door lunch

- Research activities, including securing funding to support a PhD studentship, medical education fellow and Macmillan clinical academic nurse researcher

A programme commissioned by Leicester City Clinical Commissioning Group to improve end of life care for their patients which led to the recruitment of three GPs to be mentors to practices in their locality and they are being supported by Dr Christina Faull, a Consultant in Palliative Medicine, and staff at LOROS A number of exciting research projects which are progressing, and evaluations will be reported on shortly for those that are concluding soon

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Update LOROS continues to develop a reputation for innovative and high quality education in palliative and end of life care, across the region and also nationally, with provision ranging from half day workshops to masters programmes. The programmes are both taught and practice development within the workplace and the range and scope of provision has expanded into a number of health and social care settings. The changing context of the external environment has had a significant impact on the provision during 2013/14, the majority of End of Life Care funding was withdrawn and we have had to re-assess our approach to the provision of the education across the locality. We continue to be committed to developing the wider workforce across LLR in terms of their end of life care practices but we are reviewing the offer and delivery methods. Key outcomes achieved:

The LOROS education strategy has been reviewed to take into account the above points and also wider strategic changes, with a re-focus on the goals and clear implementation plans developed with key milestone points.

We continue to look to diversify income as well as build new partnership

arrangements with stakeholders locally, regionally and nationally. We have been working on the marketing and promotion of our programmes and contributing the development of the website as a key tool.

The LOROS education department have been implementing new mandatory

training frameworks across the hospice with the introduction of an e-learning platform and e-learning modules. We are also working with the different departmental teams to identify, plan and deliver essential for role training and also supporting individual and team development.

Patient Experience Priority 3 – Deciding Right In 2013 LOROS will be utilising a new guide called ‘Deciding Right – Planning your care in advance’. This has been developed to help patients consider what care and treatment they might like to receive if they should become seriously ill, disabled or unable to make decisions for themselves in the future. Health professionals and partners from across Leicestershire have come together on the Deciding Right programme to help provide patients with more choice about their care. Planning your care in advance is a completely voluntary process and involves discussions between patients and the people who provide care for them, for example nurses, doctors, social workers, family or friends. The guide offers advice on how to have these discussions and also explains how to record their decisions.

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Taking part in this process gives people the opportunity to express some views, preferences and wishes about their future care so that these can be taken into account if they were unable to make their own decisions at some point in the future. It will not only help them make informed choices but also enable them to communicate their wishes to all involved in their care. Thinking about the future and making plans can be difficult and it’s not always easy to have these discussions. Nobody is obliged to plan their care in advance however this guide will be a valuable tool to help people through the process and ensure their views are heard. Update We continue to work on changing the culture to ensure we offer patients the opportunities to discuss their future end of life care wises. Key outcomes achieved:

- Training has been delivered to LOROS staff and the Macmillan Nursing Team

- Emergency health care plans have been completed where patients have shared their wishes for future care

- Working with other organisations in LLR to develop an electronic way of sharing

communication about patients Priority 4 – Enhancing our Communication Processes LOROS continues to involve patients and carers who have accessed our services proactively in the planning, developing, monitoring and evaluation of all care services. You will read later in the Quality Account the progress made in this area over the last 12 months. However as an organisation we recognise this priority is not only important, but also has many different elements, hence the decision to highlight this again as a key priority for the coming year. Since the appointment of the new Marketing & Communications Manager, the LOROS website project has been further developed. Phase 1 of the website design and build will begin in May, and will be live by September 2013. Patients and carers will be involved in the testing phase of the website design to ensure the site is ‘user friendly’, easy to navigate and has the right content for all service users. The new website will also ensure that the referral process and important information is easy to access for GPs and other health and social care staff. Good communication and information is key at all stages in the patient’s journey and is vital in helping patient make informed decisions.

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Our aim is: Ensure patient information is current, clinically accurate, relevant to the patient

and presented in a clear, understandable way. Ensure there is written information available to patients/carers on a wide range

of areas, covering general information about LOROS and the clinical services provided and specific clinical information about procedures.

Comply with Care Quality Commission Essential Standards of Quality and Safety. This reinforces that people who use health care services need to be given information which enables them to make informed decisions about their care and treatment.

Comply with The National Cancer Peer Review programme – provision of written patient information.

Present LOROS as a professional organisation which prides itself in having high quality patient information which follows a clear format and which conforms to LOROS style guidelines.

Help patients make informed decisions. Over the next year, The Patient Information Group which is made up of key LOROS staff and patients and carers will review LOROS internally produced information to ensure it meets the above aims. A subgroup of the patient information group - The readers’ panel will assist in this process. The current Patient and Carer Participation Group will continue to meet quarterly. Our plan is to consolidate and build on the existing work. The work of the group will be highlighted internally with all clinical departments and externally in our LOROS newsletter with the aim of increasing membership to this group. The election of chair and vice chair will be discussed shortly with group members. It is hoped that within the next year patients and carers will express interest in these roles and be elected. Key outcomes achieved:

Implementation and embedding of the LOROS Style Guide Approval and roll out of the new look LOROS patient information leaflets – in line

with the roll out of corporate brand.

Build and launch the new LOROS website (Phase 1) by September 2013 Development of a portfolio of photographs to convey the range and "essence" of

LOROS' services to incorporate into both the website and patient information leaflets

Development of LOROS social media and key messages on service Review LOROS non-patient information and consider how this can be rationalised

and improved to showcase LOROS and its services Update

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Good communication and information is key at all stages in the patient’s journey and is vital in helping patient make informed decisions. The new LOROS website is now live and we recognise the importance of information accessibility and are committed to making sure the website is accessible to the widest possible audience, regardless of technology or ability. It has been built to be ‘user friendly’, easy to navigate and has the right content for all service users. The new website ensures that GPs and other health and social care staff can easily access the referral process and other important information. Patients and carers were involved in the testing phase of the website design. Key outcomes achieved:

Implementation and embedding of the LOROS Style Guide Roll out of the new look LOROS patient information leaflets and LOROS factsheets –

in line with the roll out of corporate brand. Development of a portfolio of photographs to convey the range and "essence" of

LOROS' services to incorporate into both the website and patient information leaflets

Development of LOROS social media and key messages on service We will continue to present LOROS as a professional organisation which prides itself in having high quality patient information, helping them make informed decisions. LOROS continues to benefit from the involvement of our patients and carers who have accessed our services. Our patient and carer participation group and patient information group provide a forum to gain the views of those people who mean the most of us. Our patient and carer participation group and patient information group has continued to meet quarterly and membership numbers have grown to 9 patients and carers. Unfortunately the opportunity of one of our patients / carers taking on the role of chair or vice chair to date has not been taken up. This is something we will continue to make available and encourage. Likewise our patient information group has continued to meet every 4-6 weeks. We have been fortunate to have maintained at least two patients / carer representatives at each meeting. Key outcomes achieved:

Agreed index of both externally and internally produced patient information which will be used either as a resource by individual departments or on display for patients/carers to access.

The review and streamlining of all externally produced patient information / factsheets

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Patient information pathway to guide staff in the review / rewriting of patient information

Establishment of a readers panel which consists of users of our services to review all revised / reviewed LOROS patient information to ensure they are relevant and easy to read.

Working plan to prioritise the rewriting of leaflets / factsheets Design, location and installation of two information points within LOROS to

display the agreed patient information The agreement of which LOROS patient information leaflets should be displayed

externally and a process to facilitate this The appointment of a volunteer to replenish leaflets within the two information

points and monitor their usage and uptake

Our plan for the next year is to continue consulting with these groups and in addition give the group members the opportunity to have a more active involvement within LOROS. Group members have already volunteered to assist us with the 5 senses survey – this is a discreet observation of the clinical environment using the 5 senses. Furthermore we are asking for patients and carers to volunteer to join our newly formed day care, community and outpatient services steering group. Patient Safety Priority 5 – Learning from the Francis Report LOROS has taken the outcomes of the Francis Report very seriously. The 290 recommendations have been reviewed and those that have potential consequences for the organisation have been identified. An action plan has been developed identifying leads to take relevant areas of work forward, and highlighting those recommendations requiring immediate action and those that will be dependent on national or regional developments prior to local implementation. Short term actions include reviewing relevant guidelines and policies to ensure they comply with Being Open, the guidance published by the National Patient Safety Agency, ensuring nurses can demonstrate in their annual performance appraisal an up-to-date knowledge of nursing practice and its implementation and the development of a set of competences that a leader within LOROS would be expected to possess and demonstrate. The LOROS ‘Whistleblowing’ Policy has also been reviewed, revised and reiterated to all staff. By actioning the relevant recommendations LOROS will also be able to achieve compliance with a number of external quality measures including demonstrating a ‘duty of candour’ and ensuring appropriate staffing levels and skill mix in clinical areas.

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A related initiative to support the patient safety agenda is the appointment of a Tissue Viability Lead Nurse to ensure delivery of the best level of pressure area care to all patients through training, education and expert practice. The intended outcomes will be enhanced care planning and management of pressure areas leading to fewer incidences of pressure ulcers developing, consistent and accurate grading of pressure ulcers with the implementation of management plans based upon up to date practices and research, and fewer incidents of grade 3&4 pressure ulcers developing on the inpatient unit. Update Of the 290 recommendations outlined by Francis, 69 were identified as being relevant to LOROS and 42 of these required action by the organisation. A recent review has identified good progress in all areas with all of the short and medium term actions (24) being addressed by June 2014. Some medium actions have been changed to long term as are awaiting national or local (CCG) guidance/direction. The long term actions not requiring external input will be completed by the end of 2014. The Board of Trustees receive regular update reports on progress against the 42 actions. Key outcomes achieved:

Participation in a national workforce study to enable LOROS to benchmark against other comparable hospices in relation to staffing levels and skill mix and identify potential future staffing models to incorporate into our workforce plan

Revision of clinical competences, which include leadership competences at all

levels

Provision of personal development folders in which all relevant information can be kept relating to competences, appraisals, evidence of patient/carer feedback, HCA code of conduct etc.

Revision of key policies to support good practice in relation to patient safety and

duty of candour

Robust and clear mechanisms in place to obtain patient and carer feedback in relation to compliments and concerns and or complaints

Inclusion of key topics such as Whistleblowing within the staff induction programme

Since the appointment of the tissue viability lead nurse the following initiatives have taken place:

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Revision of care plans and supporting documentation relating to pressure area care and pressure ulcer management

Robust internal process developed to internally investigate grade 3&4 pressure ulcers and ensure any required improvements in practice are implemented

Introduction of a pressure area assessment in our Day Therapy Unit to support the 'every contact counts' initiative.

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Quality Overview - Review of Quality Performance LOROS is a specialist palliative care provider which also provides a portfolio of educational events that can be accessed by external service providers across Leicester, Leicestershire and Rutland and beyond, enabling the specialist knowledge and expertise to be shared to improve the care of other patients with palliative and end of life care needs. The quality and performance of the services delivered at LOROS are reviewed in several ways. Each year the Lead Clinical Commissioning Group (CCG) undertakes a quality visit to measure compliance against a number of quality measures. The Care Quality Commission undertakes at least one unannounced visit each year, measuring compliance against 16 different quality outcomes. Outcomes from a number of Key Performance Indicators (KPIs) are reported regularly in a clinical dashboard internally to the Board of Trustees and externally to the lead CCG. In addition, in accordance with the Department of Health (DH) LOROS submits a National Minimum Dataset to the National Council for Palliative Care. For the purpose of this quality account, LOROS had 2 quality visits within the last year. April 2013 Quality Visit Commissioners observed the day therapy unit and had discussions with a number of patients. Key themes from the quality visit in April 2013: Toilet Facilities

- Signage not appropriate – issue re same sex accommodation requirements - Privacy curtain in place and nurse call system to be fitted soon - The lock can be operated from outside

The unit does not display any signage/symbols which would be readily recognised by patients with dementia or brain injury. Staff advised that such patients are accompanies by a member of staff. General signage is small – not friendly for poorly sighted patients. Patients gave very good feedback about their experiences

- Patients feel very supported and look forward to attending the therapy sessions - Patients feel the facilities are good and they receive good care - There is a good choice of food and drink with all dietary requirements catered for - Patients feel that there is good communication between staff, medical staff and

themselves with any concerns being dealt with effectively

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Immediate actions Toilet signage within day therapy amended. Discussion around patients eligibility and criteria to attend day therapy was discussed with the commissioners. Reassurance was given that patients with a primary diagnosis of dementia / brain injury do not access day therapy. For those patients with a secondary diagnosis of dementia or brain injury are risk assessed. QUALITY VISIT FEEBACK AND OBSERVATIONS 19th March 2014

Introduction The Quality visit was arranged as part of the annual arrangements with LOROS so that Commissioners can be assured of the quality of care, patient safety and experience at LOROS in line with the requirements of the 13/14 Quality Schedule. Discussion took place with the Director of Clinical Services and additional assurances and evidence was sought where necessary. It was agreed that with regard of the Quality Schedule for 2014-15 LOROS could send the evidence at any point to the Quality Commissioners for their review. Following this, Commissioners visited the In-Patient ward. Quality Commissioners were shown around the ward by the in-patient sister. Also in attendance was the IP&C Lead for the CCG’s and the IP&C Lead for LOROS.

Environment All public and patient areas appeared clean and well maintained with no evidence of dust, dirt or debris seen on the day of the visit. Surfaces in toilets and bathrooms appeared clean and intact with no evidence of staining or mould seen on surfaces. The whole environment promoted a positive caring atmosphere. The following positive points were noted:

Equipment (including cleaning) was free of dust and debris

Alcohol gel and other hand hygiene facilities were available for staff and visitors.

All dispensers were noted to be cleaned and free of product build-up

All staff on duty demonstrated compliance with the Department of Health

recommendations of bare below the elbows

Staff were witnessed cleaning their hands prior to patient contact

The whole hospital was remarkably clean and housekeeper staff feel like they are an integral part of the team. Infection prevention and control (IP&C) The Lead Infection Prevention and Control Nurse confirmed with the CCG Head of Infection Prevention and Control the following was in place:

An assurance framework in line with the Hygiene Code as it related to the

organisation

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A programme of audit demonstrating staff compliance with organisational IP&C

policies

A programme of update and review of all policies relating to IP&C

A training and education programme that included IP&C

Staff access to Occupational Health services

Privacy and Dignity Clinical notes are stored away from public areas and screens are available on all computers to prevent others from seeing confidential information. Same sex accommodation is available with physical barriers between male and female areas. Two or the three bays remain in a single sex state all of the time ( one female and one male) a third bay is interchangeable from male to female of the same sex but never with mixed sex. There is clearly identifiable toilets and washing areas. Staff place a notice on the door of an individual to whom they are attended to notify others that private care may be taking place. No patients were observed in an embarrassing circumstance and where screens were used these were used appropriately. A patient told us that when they use the call bell it is answered promptly all of the time irrespective of it being day or night. There is a quiet room for patients and relatives to use. Visitor’s numbers are managed via use of a relative’s specific area where there are 3 bedrooms for 3 families at a time to stay overnight. Themes from staff

The patient is at the centre of everything and this is instilled throughout the

organisation - It’s a lovely place of work, they have their priorities rights

Training is available and you are given enough time until you feel confident

before you are left alone.

A full induction programme is in place where all policies are gone through

If there are any issues such as concerns regarding safeguarding or breaches in

infection control we discuss them with our line manger

If there is an untoward event or distressing event we have a debrief afterwards

and if need staff are referred to the in-house counselling service

There is break out room for staff if a situation is disturbing and/or distressing

If not sure about a policy or procedure don’t feel afraid to ask

Quotes from patients and relatives

You feel that the patient is at the centre of everything and this is instilled

throughout the organisation

Everything is to our timetable not a timetable set by others

When you call someone comes

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They allow my husband to participate in my care

Everyone is so cheerful and they all know your name even volunteers who I’ve

never met ask after me.

I didn’t want to come here at first but once id been here a day I knew it was

right for me they allow me to have more control over my life as my symptoms

become under control. I am now making plans for my end of life for it to be

here.

Next Steps It was agreed that LOROS will start to work toward the 14/15 quality schedule and will send the evidence to quality commissioners as when they generate it. Commissioners will also work with LOROS to ensure that they feel fully integrated into the whole health economy in respects of end of life and palliative care. In Conclusion, Quality commissioners were extremely assured and impressed with the level of care that is given at LOROS. We recognised that it is a priority for the organisation to put the patient at the centre of all they do and this resonates throughout the organisation and throughout all levels and grades of staff. We would like to thank all those individuals who took time to speak with us and made us feel welcome.

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Clinical Data

Indicator 2013/14 2012/13 2011/12 2010/11 2009/10

Total number of new referrals 1888 1847 1616 1697 1574

Total number of admissions to Inpatient Unit (IPU) 819 769 797 730 659

% of admissions ending in discharge 61% 56% 55% 54% 45%

% occupancy 75(M)/83 79(M)/86 83(M)/90 73(M)/80 76(M)/82

Average Length of stay on the IPU (days) midnight figure 11 12 14 13 12

Total number of medical outpatient attendances including Manor Croft and Domiciliary

806 552 509 528 649

Total number of Lymphoedema outpatient attendances inc. Consultant Lymphoedema clinics

1809 2071 2316 2623 2197

Total number of Enablement Team Therapy Clinic attendances including Acupuncture sessions

318 144 99 117 151

Total number of Complementary Therapy Outpatient sessions not including Ward activity

996 582 780 937 690

Total number of attendances by patients at Day Therapy Unit

1631 1448 1829 1830 2010

Total number of contacts with patients by the CNS Team 3417 3287 3578 3394 3044

Total number of written clinical complaints 3 3 4 10 8

The number of clinical complaints that were founded 2 1 1 9 5

The number of clinical complaints which were unfounded 1 2 3 1 3

The number of written compliments 419 404 346 N/A N/A

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Indicator 2013/14 2012/13 2011/12 2010/11 2009/10

The number of drug incidents 63 36 41 44 36

The number of near miss drug incidents 52 90 50 25 16

Slips, trips and falls (patients only) 116 109 115 109 82 The number of patients who experience a fracture or other serious injury as a result of a fall (from 2011 onwards all fractures are classified as Serious Incidents)

2 0 1 2 2

The number of patients known to be infected with MRSA on admission to the IPU

9 1 4 5 14

Patients infected with MRSA whilst on the IPU 0 1 0 1 1

The number of patients known to be infected with Clostridium difficile, Pseudomonas, Salmonella, ESBL or Klebsiella pneumonia on admission

8 4 2 2 3

Patients who contracted these infections whilst on the IPU 1 5 2 0 1

Number of Patients admitted to the IPU with pressure ulcers 117 55 - 81

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Number which were Grade 3 or 4 35 15 10 25 15

Number of Patients who developed pressure ulcers whilst on the IPU 39 21 - 25 22

Number which were Grade 3 or 4 4 6 2 2 4

The total number of serious patient safety incidents or serious incidents (inc. pressure ulcers of grade 3 and 4 developed at LOROS and fractures)

8 6 3 0 0

Number of (NHS) Never Events 0 - - - -

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Supporting data: The hospice cares for over 2,500 patients and relatives each year. There has been an increase in the number of admissions to the IPU during 2013/14 plus an increase in the % of patients being discharged to a different care setting, predominately home/care home. The overall bed occupancy has fallen slightly as has Length of Stay on the IPU. The increase in attendance in medical outpatient sessions is due to the clinics running alongside the Day therapy Service, 4 days a week. The input to Day therapy Services has also increased the number of attendees at Enablement clinics. Smarter ways of working in the Lymphoedema Service including telephone follow up calls and discharging patients if appropriate account for the reduction in attendances. Unfortunately there is also a high DNA rate in this area. We hope to introduce text reminders in 2014 via SystmOne to help reduce the DNA rate. The introduction of volunteer complementary therapists providing sessions in Day Therapy accounts for the increase in complementary therapy sessions. We received 3 written complaints during the period April 2013 – March 2014 the same number as in the previous year. One complaint was regarding the Lymphoedema service and was unfounded. The other two complaints were regarding the IPU, one of which was not directly related to the care at LOROS. A relative had asked for comments on a patient’s medical condition and care on admission to LOROS following what they perceived as inappropriate care and treatment at another provider organisation. All complaints are taken seriously, thoroughly investigated and acknowledged to the person making the complaint. They are also reported to the Clinical Governance Steering Group. Once the investigation has been completed the findings are shared with the complainant and the appropriate actions taken with the relevant staff. A register of complaints is kept along with a register of compliments. During the past 12 months, the number of incidents reported has increased. However, there has been no harm as a result of these incidents. A proactive reporting culture supports staff to report all incidents including near misses. All incident forms are initially reviewed by the relevant head of department and learning points noted and fed back to the appropriate teams to action. The forms are also seen by the Facilities & Operations Manager who is responsible for Health and Safety at LOROS, the Head of In-Patients Services and the Director of Care Services. All incidents are logged and reported on a quarterly basis to the Clinical Governance Steering Group and any further actions identified.

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Drug incidents are also discussed at the Therapeutics Committee and areas for improvement identified and subsequently actioned. In addition, incidents relating to controlled drugs are reported quarterly to the Local Intelligence Network. Accountable Officers from all relevant healthcare providers across LLR are members of this group which provides an external governance process regarding the management of controlled drugs. There has been an increase in the number of patients admitted to the IPU with infections during 2012/14 however; infection rates remain low as LOROS continues to proactively address infection prevention (IP) across the organisation All grade 3 & 4 pressure ulcers are recorded and reported to the CCG immediately, either on admission or if they develop following admission to the IPU. Whilst there has been a significant increase in the number of patients admitted to the IPU with a pressure ulcers including grade 3 or 4, there has also been an increase in patients who have developed pressure ulcers during their admission although fewer developing into a grade 3 or 4. Following the recruitment of a Tissue Viability Lead Nurse there has been more education and training to support staff in reducing pressure ulcers. The gaps in data in 2011/12 were due to an internal data collection issue. Any Serious Incidents are investigated by LOROS and also reported immediately to the CCG. A total of eight incidents were reported in 2013/2014; five being pressure ulcers, which developed into grade 3 ulcers whilst the patients were on the IPU, two were fractures following falls on the IPU. One incident, an unexplained death, is still under review by the CCG. The patient’s death was expected and the coroner and patient’s relatives were fully aware of the incidents leading up to the death. The coroner did not request an inquest and agreed for the death certificate to be issued. In the last year LOROS has started to report on the occurrence of any relevant (NHS) Never Events. There have been none reported in 2013/14.

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Demonstrating Patient Outcomes Outcome measurement continues to have a major role to play in improving the quality, efficiency and availability of the services provided by LOROS. We are aware that the NHS reforms place greater emphasis on demonstrating outcomes. As an organisation we are keen to develop this aspect. This why we have identified this as a key priority for LOROS in 2014/15, under the heading of clinical effectiveness. Moving forward we should then be able to demonstrate clear benefits in relation to the services we provide. As outlined in Part 2 of this document we will be implementing the Integrated Palliative Outcome Scale as a Patient Reported Outcome Measure across services in the next year. This will provide more patient derived data about current concerns, as well as enabling a clearer idea about how things are changing for patients over time, and what difference hospice services are making, and indeed need to focus on for the future.

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Feedback from Patients/Families What Our Patients Say about the Organisation LOROS values the views of our patients and carers and actively engages with users of our services in a number of ways. Patients are encouraged to give on-going feedback through a variety of approaches such as Patient Satisfaction Questionnaires, “Tell Us What You Think” forms or joining one of our groups such as the patient and carer participation group, patient information group or reader’s panel.. The ‘Tell Us What You Think’ feedback is collated at the end of each month and displayed at the hospice for patients, carers, staff and visitors to see. This includes positive comments plus any actions that have been put in place to address suggested improvements to our services. Patient Satisfaction Questionnaires A comprehensive Patient Satisfaction Questionnaire is distributed annually across all departments. A total of 268 questionnaires were handed out to patients/carers during August 2013 and 135 were returned giving a response rate of 50%. You will see from the PSQ data, LOROS added in a new question which reported on the family/friend test element. Patient and Carer Participation Group This group has patients and carers as members. Their valuable feedback helps us to shape our current and future services to meet the needs of patient we care for. A current member of the group reflects “When my husband was transferred to LOROS for pain management it was a very frightening prospect in addition to the emotional stress caused by his illness. However, the reality was completely different and the experience of being in LOROS was so comforting for my husband and our family, and therefore for this reason I joined the Patient and Carer Participation Group , to draw on experiences and hopefully ease people’s fears and perceptions.” Patient Information Group / Readers’ Panel The readers’ panel reviews new and revised LOROS information leaflets. The panel reviews the language used, the layout and presentation and assesses its appropriateness for the targeted audience. The readers’ panel works alongside the patient information group, which meets bi-monthly at the hospice to review patient literature, ensuring it is available to, and meets the needs, of all groups, including those hard to reach. The group also works to ensure appropriate literature is distributed externally. A current member of the group shares her thoughts: “Being a member has enabled me to continue a personal link with LOROS. At our meetings the views and experience of all are welcomed and discussed in order to continue

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to provide the standard and quality of care to patients and families to which the hospice is committed. Staff and volunteers work together in a spirit of mutual respect. It really is most impressive and rewarding.” FAMCARE 2013 - Action Plan A service evaluation of bereaved relatives’ satisfaction with end of life care. Project lead: Dr Luke Feathers. Methodology Duration of service evaluation: 1st June – 31st July. Covers deaths on the inpatient unit April 2013 – June 2013. The FAMCARE2 tool was sent with a generic covering letter and a return / freepost envelope to Association of Palliative Medicine (APM). Data analysis was analysed by the Association of Palliative Medicine and fed back to individual services. Services had access to their own data and also comparable (anonymous) data from other services. 83 bereaved carers were sent questionnaires. 39 were returned. Results In general terms our results were good and comparable or slightly better than the national benchmark data. Bereaved carers had the opportunity to write free text comments, the positive comments received far outweigh the negative. Examples: “The support and care shown to the patient and family were excellent.” “We couldn’t have been more impressed with the way in which the staff responded to both mum and the rest of the family. You have our wholehearted thanks – we cannot praise enough!” “The care my husband received on the last day of his life was outstanding. He was treated with such compassion, dignity and care. The staff supported the whole family magnificently and it comforted us so much as the end of his life was so peaceful and dignified. The hospice offered support during the last few months of his life but my husband did not want to take them up on some of the offers. The sense of calm and peace in the hospice and the welcome given by all the staff and volunteers is incredible and it helps the families so much in such difficult circumstances.”

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Individual Comments Action

Progress – Timeline/

Responsible person “Response to patients needs were often not met and slow”

Results discussed at Clinical Consultants and Heads of Department meeting on 7th January 2014. Results subsequently fed back to Team leaders by Ward Manager to cascade and discuss in team meeting. Detailed feedback of audit by Dr Feathers to Ward Manager and Team Leaders via ward sisters’ meeting to agree any outstanding actions for consideration

07/01/2014 Immediate Ward Manager / Team Leaders 22/05/2014 Ward Manager / Team Leaders

“The only criticism is that I repeatedly had to ask the nurses to ensure he wore his boxer shorts over his incontinence pads in order to protect his dignity as he was prone to throwing off his bed sheets which left him exposed”

Results discussed at Clinical Consultants and Heads of Department meeting on 7th January 2014. Results subsequently fed back to ward staff by Ward Manager and Team Leaders to cascade and discuss in team meeting. Detailed feedback of audit by Dr Feathers to Ward Manager and Team Leaders via ward sisters’ meeting to agree any outstanding actions for consideration Dignity awareness now included as part of annual essential for role training

07/01/2014 Immediate Ward Manager / Team Leaders 22/05/2014 Ward Manager / Team Leaders Ongoing

The FAMCARE results were returned by the APM mid-November 2013. 17 positive verbatim comments were received alongside four negative verbatim comments. Please note that three out of the four negative comments were given with positive comments also.

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Results have been shared with clinical governance group. The above comments relate to the inpatient unit and the plan is to discuss the result to the Patient & Carer Participation Group to address any further potential areas for improvement.

“One particular nurse in red team offended me when discussing my husband’s need for a catheter. She showed no empathy to our situation”

Team Leaders to review current communication strategies when discussing elements of care with a patient and their family to ensure that where possible conversations are held in a quiet area of the ward to maintain privacy. Red team leader aware and discussed with team via team meetings.

Immediate Ward Manager / Team Leader

“A duvet at night would be nice for when my auntie slept in the recliner chair”

Duvets can be made available for carers upon request along with pillows. Housekeeper aware and will offer duvets to families when staying overnight.

Immediate Ward Manager / Team Leaders

“The system of trying to get into LOROS was very hard and upsetting due to NHS especially when there were vacant beds”

Vacant beds – there are sometime issues around the capacity of medical and nursing staff to admit to empty beds at times if 4 or 5 patients have already been admitted that day.

Occupancy runs at around 75% which does allow urgent admissions (including out of hours which constitute 15% of all admissions) to come in. It can be very frustrating for patients and families if they feel there has been resistance to them being admitted and if the patients meet the referral criteria then LOROS is keen to admit them within the constraints highlighted above. Introduction of a Daily Planning meeting to optimise the admission procedure.

Ward Manager / Head of Inpatient Services - actioned

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Patient Satisfaction Questionnaire (PSQ) - 2013 Action Plan

Question Results Action Progress – Timeline/ Responsible person

2.1 Did you receive any LOROS leaflets?

Yes – 47% One of our key priorities for 2013/14 is to enhance our patient information. This is a key objective for patient experience lead. A patient information group has been set up. External patient information index completed. All of the internally produced LOROS info will have been reviewed at the patient information group by the end of November 2013. Pathways will be developing for each clinical department in January 2014 to highlight at what point info is give. Work has begun on rewriting the agreed internally produced info. A pathway has been developed to support this and is currently being tested. We envisage each leaflet from writing to production will take 12 weeks + We aim for all internally produced leaflets to be completed in the new look and feel within 12-18 months.

January 2014 – Clinical Governance and Patient Experience Lead May 2014 – Pathways completed and on intranet February 2014 – Clinical Governance and Patient Experience Lead May 2014 – 35 factsheets rewritten and sent to design agency. 17 leaflets to be prioritised and issued to staff by end of May 2014.

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Patient information units have been authorised by SMC and will be in situ by December 2013. Looking at the individual department data, the following areas demonstrate a high percentage of not receiving any leaflets: Medical outpatients – 83% No leaflets are currently given out in Medical Outpatients. Head of Day Care and Community Services to consider whether this should continue or whether a leaflet should be developed. Currently an appointment letter with details of what to expect at the outpatient clinic is sent to patients. A map is also included. The letter includes a cut off slip for people to complete if they wish to receive copies of their outpatient letters. This was discussed at the patient information group on 26th November and the decision was made to keep the letter and add to it rather than developing a new leaflet about the clinics. If different treatments are discussed with people in clinic they are given information sheets about specific treatments. Lymphoedema – 40% Lymphoedema – patients are given a general Lymphoedema information leaflet on their first appointment and then may be given specific information sheets about any treatment that will be carried out as appropriate. Therefore they may not always get information at each appointment. Ward – 74% A patient information booklet has been introduced and is available on each patient’s bedside locker. The housekeeper or admitting nurse makes the patient and their family aware of the information on admission to the ward.

January 2014 – Clinical Governance and Patient Experience Lead January 2014 – Clinical Governance and Patient Experience Lead

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Counselling – 56% The Counselling Team are in the process of reviewing their information booklet that describes their service. The first draft has been reviewed and further work is underway to benchmark what other hospices provide. This question was also discussed with the Patient information Group in November. The group felt this question should be replaced with “Did you receive enough information?”

3.4 You, your family and friends were involved as much as you wanted in decisions about you care and treatment?

Always – 78%

N/A – 9%

Although the percentage for ‘always’ has decreased from 83% last year, 9% of respondents felt this wasn’t applicable to them. Both of these added together = 87%.

3.7 Did staff tell you who to contact if you were worried about your condition after you left the hospice?

Always – 66%

N/A – 26%

Initially 66% seems a low figure, however 26% felt this question wasn’t applicable to them. Both of these added together = 92%.

4.1 Were you offered a copy of the letter sent to your GP following your outpatient appointment?

Yes – 67%

No – 33%

(Head of Day Care and Community Services) to review current processes of offering copies of letters to patients following medical outpatients and outline a plan of action. Currently the outpatient letter which gives details of the appointment also has a cut off slip which people give to the nurse if they wish to receive copies of outpatient letters. This is then scanned onto SystmOne and a reminder is put onto their notes to action. The consultants are happy to ask patients as well if they wish to

February 2014 – Head of Day Care and Community

4.2 If no, would you have liked to receive a copy?

Yes – 100%

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receive letters so that no one slips through the net. I will also ask the out patients nurse if they can check if a patient wants a copy of their letter at each appointment even if they have forgotten to bring the slip back. I will discuss with Clinical Compliance Lead and Complementary Therapy Manager the best way to audit this. It was decided not to send all patients copies automatically as some might not want them. Sometimes it is appropriate to edit the letter sent to the patient. Timeline: November 2013

Services

5.1 How did you find…

a) The hospitality of the catering staff?

b) The variety of food offered?

c) The quality of food?

Having looked at the departmental data, the fall in compliance relates mainly to Loughborough Day Therapy. Response from Head of Day Care and Community Services: Unfortunately the catering at Loughborough is not under our control although we have fed back concerns to the Loughborough Hospital housekeeping as they have been raised and patients report that improvements have been made. We have tried alternatives such as taking tins of soup to heat through at Loughborough if patients prefer. We will be ceasing the day therapy service at Loughborough from the 6th December and moving the service to LOROS so hopefully this issue will be resolved.

5.2 If you had any

cultural/special

dietary needs do

you feel these

were met?

Yes – 81% No – 19%

6.1 If you were

unhappy with any

aspect of our

services, would

Yes – 59%

No – 16%

As mentioned previously, patient information is a key priority for the organisation. All of our new information will contain a section on how to complain. Patients admitted to the inpatient unit are seen by a senior member

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you know how to

complain?

Unsure - 25% of staff within 72 hours of admission. This is known as a quality assurance visit and involves informing the patient and family how to raise issues/complaints if needed. This practice will be extended to our day therapy patients. Day Therapy Manager or Deputy will ask patients on their 3rd visit to DT if they were unhappy with any services would they know how to complain. Quality assurance question – the question will need adapting slightly from the one asked of in patients so I have asked to meet with S1 Lead to see about changing the drop down list on S1 and putting the questions on the DT template. I will then have to go through the process with Day Therapy Manager and Deputy so we will aim to start this from the new year if that’s ok (providing S1 Lead can make the changes by then) I will ask if these results can be reported to clinical governance.

10.1 Do/did you

have a keyworker?

Yes – 57%

No – 23%

Unsure – 20%

Looking at the feedback it would appear that patients and carers are ticking multiple boxes and not identifying one person as their keyworker. Furthermore, it would appear that our patients and carers are not familiar with this term and lack understanding of the meaning. Action: Clinical Governance and Patient Experience Lead to discuss continuing this question next year with patient and carer participation group.

Clinical Governance and Patient Experience Lead – February 2014

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12.1 Do you have any additional comments on improving the services you accessed?

“A bus that called at the hospice would be helpful”

Operations Manager: This is out of our control as it would be the responsibility of the Bus providers, Arriva, Central Bus etc., and they have no plans to provide a service on to our estate.

“Bigger sandwiches”

Operations Manager: Baguettes are also available to order from the snack bar, so please ask the Volunteers.

“[complementary therapy] to be more than 6 sessions it helps me relax after the loss of my husband at my young age”

Complementary Therapy Manager: Six sessions of complementary therapy are offered to each individual that is referred to complementary therapy. We do accept re-referrals to complementary therapy if appropriate these are always reviewed on an individual basis. Following the feedback from the survey we will assess the relative’s needs after the bereavement and may offer a further course of 6 treatments. However, we are mindful that we do not want to make the relative dependent on the service so at the same time we would also sign post the relative to other services like, for example, counselling if the relative agrees

“…I feel a bit uncomfortable as I was youngest there but I know that’s just because of my health reason”

Day Therapy Manager: We are sorry that you felt uncomfortable at being the youngest patient when you attended day therapy. Our aim is to make all of our patients comfortable and to meet their needs of all our patients regardless of their age. We have taken on board your comments and we are planning to ‘Trial’ a young person’s day in the future

“Food could be improved” *Loughborough Day Therapy* Day Therapy Manager: This has been addressed above.

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“Could be a bit quieter at night”

Ward Manager: At times the level of noise on the ward at night can be variable which can be caused by a variety of activities relating to our delivery of patient care. We recognise the importance of promoting a good night’s sleep and have reminded staff to be mindful of the noise levels at night.

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What Our Staff Say about the Organisation Staff feedback is obtained through team meetings, our Heads of Department (HoDs) forum, and through staff surveys. In 2013 LOROS participated in the anonymous Birdsong Survey through Help the Hospices. 73% of staff completed the survey compared to 80% in 2011 and 75% in 2010. Several actions were identified from the 2013 results and the organisation is keen to see if there had been improvements in these areas: Birdsong Survey 2013

Section Actions/Outcome

Organisation and Communication: This area received very positive comments. Significant pieces of work have been undertaken in the areas of, the impact on the environment and diversity being valued. Favourable responses have reflected this. An overview of the role of the Board of Trustees was delivered at the October 2013 HoDs meeting. This also provided staff with an understanding of the current major areas of focus. Further improvements will include:-

the introduction of a change management process and,

the development of the LOROS intranet.

Morale and work/life balance: Responses were generally positive. However, concerns in relation to contracted hours, stress and work life balance has been focussed upon. Concerns were also received that referred to complexity of patients, increased pressures on clinical staff and movement towards a more NHS environment. Resourcing levels have been reassessed to include stronger links to budget setting and a greater emphasis placed on agreeing realistic objectives as part

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of the Personal Development Review (PDR) process. There are plans to review the current service model to ensure it is fit for purpose. Chief Executive forums have been set up as a response from the Heads of Departments to improve internal communication generally. Support for staff to try to minimise feelings of stress continues as has a focus on wellbeing. A number of staff wellbeing initiatives took place during 2013.

Development and Reward: A remuneration review has commenced which was identified as a Key Priority for 2013/14. LOROS again participated in the 2013 Hospices salary survey. The results of which will be used along with other information received to try and ensure we are paying staff appropriately. This information will form part of the remuneration review. Greater emphasis has now been placed on the PDR process with the introduction of the improved initiative to support staff personal and professional development.

People Management: In order to address the concerns raised as to whether sickness absence is dealt with effectively, a review of the sickness absence management policy, including gathering benchmarking data has been carried out. Recommendations have been put forward for consideration.

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The Board of Trustees Commitment to Quality The Board is fully committed to ensuring the provision of the highest quality of care to patients and their families, to ensure the organisation achieve its mission. The hospice has an established governance structure, with members of the Board having an active role in a number of groups, committees and service development initiatives to ensure LOROS provides all of its services in accordance to its Statement of Purpose. This has recently been updated and is publically displayed within the hospice. The Board of Trustees receive regular written and verbal updates at each Board meeting in relation to care services including feedback from patients and carers and outcomes from clinical audits, incorporating those which have led to improvements in service provision. They also receive the outcomes of any unannounced visits by the Care Quality Commission (CQC) and the Quality Visits undertaken by the Clinical Commissioning Groups (CCG). Trustees attend a number of events at the hospice, which gives them the opportunity to meet staff, volunteers, families and carers and personally receive feedback regarding the quality of the services provided. The Board is confident that the care and treatment provided by LOROS is of a high standard and is cost effective.

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Glossary of Terms: ALS - Amyotrophic lateral sclerosis APM – Association of Palliative Medicine CCG – Clinical Commissioning Groups CNS – Clinical Nurse Specialist CPEP – Centre for Promotion of Excellence in Palliative Care CQC – Care Quality Commission CQUIN – Commissioning for Quality and Innovation DH – Department of Health DMU – De Montfort University GP – General Practitioner HoDs – Heads of Department IG – Information Governance IP&C – Infection Prevention and Control IPU – In-Patient Unit IPOS – Integrated Palliative Outcome Scale KPI – Key Performance Indicator LCP – Liverpool Care Pathway LLR – Leicester, Leicestershire and Rutland LPT – Leicestershire Partnership Trust MDS – Minimum Data Set MDT – Multi-Disciplinary Team

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MND – Motor Neurone Disease NHS – National Health Service NICE – National Institute for Health and Care Excellence NIV – Non-Invasive Ventilation PDR – Personal Development Review PPD – Preferred Place of Death PSQ – Patient Satisfaction Questionnaire UHL – University Hospitals of Leicester

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Written statements by other bodies. The LOROS Quality Account 2013 -2014 was sent to the following organisations for comment: West Leicestershire Clinical Commissioning Group on behalf of West, East and City CCGs No comments received Leicestershire, Leicester and Rutland Health Overview & Scrutiny Committee “Appropriate officers are not in a position to provide a sufficient response to the LOROS Quality Account by the deadline” Healthwatch Leicester No comments received Healthwatch Leicestershire No comments received Healthwatch Rutland Unable to contact the relevant officer by the final date for comment