bluuebunny/crossref_metadata_2025 huggingface dataset:
The provision of public education – a hospice's journey
Authors: de Renzie-Brett Helen , Alsop Anne , Whitfield Sarah , De Leeuw Wayne
Published: September 2011

The End of Life Care Strategy highlighted the importance of public education and the Dying Matters coalition was created to encourage people to talk about dying. This describes the experience of one hospice in taking forward this initiative, explaining the approaches used and identifying some of the achievements and challenges faced. One of the aims of the current hospice strategy was for the hospice to develop a role in public education. A core group of enthusiastic staff including health and social care practitioners, educationalists and fundraisers met to explore how we could begin to address this aspect of the strategy. The underpinning philosophy of our approach was to work in partnership with our community, but how to get started was the first challenge. In 2009 an initial event was held by the group in a local market town on a Saturday morning. However, just four people attended. The group met, reflected upon the approach adopted and the lessons learnt. An opportunity arose to attend an open day at a local crematorium and this proved much more successful with greater levels of interest from the over 500 people who attended. This led to a change in strategy through attending local events organised by other organisations and having a ‘stall’ manned by staff, as well as responding to invitations from individuals/groups, such as a local General Practice patient participation group. This has achieved greater success with people asking questions about how to approach a discussion about dying with a family member or friend and also it is breaking down perceptions of the hospice. The group has also encouraged hospice volunteers to support this initiative and they have been interested and enthusiastic. The journey has had highs and lows and the challenge is to keep momentum going.
Innovation in nursing practice: developing a nurse led community unit
Authors: Kirkland Gill , Ekin Chris
Published: September 2011

In 2010 the Douglas Macmillan Hospice was successful in receiving a government grant to build an eco-friendly environment which houses three separate independent living units. We were keen to develop on the fundamental aspect of total holistic care, which, for many palliative care patients means good nursing care.

The aspiration was to move away from the traditional model of care, to a model which delivers choice to the patient, offering a quality service which develops methods of reaching out to patients with a more rapid access, in line with the End of Life Strategy.

The aim was to provide an alternative place of care for a variety of patients. We sought to provide excellent end of life care, if it was the patients' choice not to die at home, respite for carers, transitional care for young adults and also excellent rehabilitation to encourage independent living as a step down from the in-patient unit.

The innovation was driven on several aspects; we wanted the unit to be nurse-led. We were able to utilise the community palliative care team who were already qualified as independent nurse prescribers, to manage any symptom issues and undertake clinical nursing tasks. The Healthcare Support workers would expand their role through education and training to support the patients to self medicate and to be a second checker for controlled drug administration. Our team of volunteer's would undergo training and education to support the Healthcare Support workers to provide basic personal care.

The units are due to open in April 2011. We hope to offer quality individualised care for patients and their family which will meet a local need and be a unique service promoting the hospice philosophy. We plan to evaluate through capturing user views and clinical audit.
Putting the child and family first: developing a clinical network for children's palliative care
Authors: Maynard Linda , Rennie Tracy , David Vickers David
Published: September 2011

National reviews have identified the need to provide 24/7 access to clinical expertise especially around the time of end-of-life. In the East of England locally commissioned reviews have recommended improvement in collaboration and joined-up clinical working between voluntary and statutory sectors.

This presentation describes a DH £30 million Children's Palliative Care Fund project to develop a managed clinical network of services throughout the East of England and reports how challenges created by cross boundary working can be overcome.

A series of externally facilitated workshops, one for nursing leaders and one for medical leaders followed by a joint workshop aimed to develop solutions in an environment where there is little new funding, little recognition of the complexity of children's palliative care, and in a region where there is no specialist in paediatric palliative medicine.

Hurdles identified in the workshops were:

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Ineffective communication processes and information sharing

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Acceptability to families of distant advice

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Professional preciousness and boundaries

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Conflicting priorities

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Achieving critical mass of clinicians for a 24/7 rota

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Commercial sensitivity – competition among providers

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Organisational and clinical governance arrangements

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Contractual framework and financial commissioning.

Children's Palliative Care is a low volume specialty, and so is best developed by network working across a larger geographical area, utilising the skills of Paediatricians with special expertise, Children's Community Nursing Teams and Children's Hospice Nurses both in their respective local areas but also across a wider geographical patch. Hospice Services, with their cross boundary catchment area, and relationships with NHS Commissioners, are well placed to facilitate such developments.

Further thought needs to be given to the balance needed between specialist services (nurse consultants and medical consultants in paediatric palliative medicine) and the more local services, and how the latter can contribute to provision of a specialist service.
Supporting the whole family: caring for children when a parent is dying
Authors: Cardy Claire , Dempster Tracie , Petty Glynis , Cowan Margaret-Mary
Published: September 2011

With an increasing number of younger adults with a young family being referred to our adult hospice service, there was a noticeable gap in the provision of appropriate support for these children. As a provider of palliative care services for both adults and children, there were opportunities to offer holistic, integrated care designed to meet the individual needs of all our patients.

The staffing includes a Play Therapist and a team of Nursery Nurses who had predominantly worked within the children's service in the home setting. However, their skills and expertise were accessible to the whole service, including children of adult patients. A programme was introduced to promote awareness among the adult teams of utilising these staff further. In the first 6 months, the Play Therapist has provided specialist interventions with 14 children of adult patients (not including bereavement support). The Nursery Nurses have so far delivered childcare support with 7 children of 4 patients. These childcare sessions have proved invaluable to the families receiving them; for example, helping at home when the patient has been feeling ill after chemotherapy, or looking after the children to allow other relatives to visit the patient in the Hospice Inpatient Unit. They have also developed therapeutic relationships with the children and enabled a sense of normality and routine at a time when there is a great deal of disruption, including trips out or assistance in accessing regular clubs or groups.

Specialist palliative care has always encompassed support for the whole family, not just the patient. The additional support for children has proved beneficial to the families cared for, and the evaluations so far have been extremely positive. There are plans to develop and extend this service in order to meet the holistic needs of this group of adult patients.
Care team volunteers
Authors: Bridge Wendy , Barklie Kate , Westmorland Sarah , Cook Amelia
Published: September 2011

Introduction

As a hospice for children and young adults we wanted to find creative, cost effective ways to enrich patient lives, using volunteers as befrienders to promote normalisation which research shows is a priority for this population.

Aims

We aimed to recruit befriending volunteers with a developed skills set, to ensure flexibility and enhance patient experience. We aimed to set up systems to recruit, train, support, and enable volunteers to work safely.

Methods

Semi-structured interviews with patients and staff revealed a demand for volunteers in a befriending role. The appointment of a Care Team member to act as a link between the care team and volunteers was essential as previous attempts to introduce volunteers to care areas were unsuccessful. Volunteer roles were widely advertised and client centred interviews enabled us to select the right personalities and understand each applicant's skills. Volunteers are required to attend 26 h of training including familiarisation with the hospice before commencement.

Results

The skill set and diversity of volunteers has added greatly to hospice life. Volunteers skills include massage, hairdressers, musicians, doctors, actors, and students thus expanding the range of services we can offer to guests. Committed volunteers may be offered the opportunity to undertake further training and fulfil an ‘Advanced Volunteer’ role.

Discussion

The project has experienced challenges in ensuring that all staff embrace the benefits of care team volunteers. Introducing ‘Managing Volunteers’ training for staff helped to address this. Future plans include extended training and setting more rigorous induction to encourage only the most committed volunteers.

Conclusion

With stringent selection, training and supervision care team volunteers can significantly enhance patient experience through normalisation and enhanced activities, an additional benefit has been the embedding of the hospice in our local community.
The journey from paediatric intensive care to children's hospice
Authors: Harrop Emily , Gupta Neelam , Lapwood Susie , Shefler Alison
Published: September 2011

Introduction

Approximately 2/3 of PICU patients who die, do so as a result of withdrawal of treatment, most of these deaths occur on PICU. We have set out to examine referrals from PICU at the John Radcliffe Hospital, to Children's Hospices over a 5-year period.

Aims

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Investigate year-wise trend in PICU referrals to Hospices

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Examine the outcomes

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Examine the process of transfer to non-hospital settings

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Inform practice.

Methods

Retrospective review of case notes for all children referred from a large tertiary level UK PICU to Children's Hospices over a 5-year period. Information was collected both from PICU and from the two hospices involved.

Results

A total of 12 children were transferred, with referrals increasing over time. 2/3 of the children were aged 2–8 years, and the mean stay on PICU prior to transfer was 13 days. The average time from initial referral to transfer was 4 days. Discussions about limitation of treatment occurred after an average of 9 days of ventilation, with 2/3 of families having had prior contact with the palliative care team involved. 1/3 the patients were still on invasive ventilation at the time of transfer, and all of those were escorted by a PICU Consultant, of these, ¾ were extubated within 30 min of arrival at the hospice. Overall, eight children died following transfer, but four children (1/3) survived for > 2 weeks.

Conclusion

It was pleasing to confirm an increase in joint working between PICU and Children's Hospices. Consistent with other studies, we have shown that 1/3 of children transferred for end of life care, initially survive. Information gained from reviewing these cases contributed to setting up a working party to produce a care pathway to support extubation within a children's palliative care framework, which is due to be published this year.
Enhancing user engagement
Authors: Cook Amelia
Published: September 2011

Introduction

This child and young adult hospice has a strong commitment to user engagement to meet CQC requirements and as an essential component of a patient centred approach.

Aims

A 6 month secondment reviewed current practice and planned future work. The priority was to ensure that all ages and abilities were included in participation.

Methods

Current practice was compared with other hospices and assessed using the Children's Hospices UK User Participation Toolkit. Writing KPIs clarified goals. The patient group was segmented by age and ability to ensure that appropriate methods of engagement were used. Patients and parents were surveyed using questionnaire or semi-structured interview.

Results

A range of options were presented by parents and patients including the use of social media, and online communication. Focus groups are successful regarding specific issues only, but less useful to evaluate ongoing experience. Recording the anecdotal, and engaging care staff in doing so, adds richness to the more formal methods of engagement.

Discussion

The ability to offer feedback to a neutral person (eg, a volunteer) encourages participation. Use of communication resources designed for specific groups, such as those with learning disabilities promotes engagement. For some this may be the only time they have been asked their opinion and they may need to be empowered. However it is important to manage expectations, it is not always possible to act upon feedback gathered.

Conclusion

Meaningful user engagement with this diverse client group requires creative methods to enable all to participate. Being able to draw on the broad skills of the care team and dedicated staff time is required to ensure that user views are listened to. How the organisation responds to the users' views and the rationale must be feedback to the user. Further work should extend to other service users, for example, volunteers and fundraisers.
Prolonged parental access to their child's body following death – a help or hindrance in the bereavement outcomes
Authors: Cornish Liz
Published: September 2011

Introduction

The first children's hospice was established 30 years ago and included a cooled bedroom where the child's body could be cared for in the hospice until the funeral. This was seen as a crucial aspect of the care extended to grieving families, allowing them to say goodbye to their child in their own way over several days, within a supported environment.

Problem identified

This practice has been replicated in over 40 subsequent children's hospices, but minimal research has evaluated the impact of this aspect of support on families. Thus a service is being offered which has not been validated as beneficial. Policies guiding this aspect of service delivery are based on practice experience and anecdotal evidence with practices differing across the country.

Methodology

A literature review was carried out to identify what is known about the impact on bereavement outcomes for parents who have prolonged access to their child's body beyond the immediate hours following death. Related literature looking at the impact of viewing stillborn babies or adult bodies following unexpected death and post organ donation was included.

Findings

While most literature suggested unspecified benefits to bereaved relatives from accessing dead bodies, there was one notable exception in stillbirth studies which indicated higher levels of anxiety and depression in mothers who had held their stillborn baby. Few studies measured the impact of access to the body on bereavement outcomes.

Recommendations

There is urgent need for research to identify the impact of this service on the bereavement outcome of parents, looking at both benefits and potential risks. This research should inform service development in terms of governance within children's hospices. Furthermore, new evidence will be added to the understanding of factors influencing bereavement outcomes for parents.
End of life quality matters (EOLQM): a quality improvement programme in Hertfordshire
Authors: Garrood Elizabeth , Russell Sarah
Published: September 2011

Introduction

The EOLQM is a collaborative education project between a local community health service and hospice. It was designed to encourage participants to identify an integrated approach to planning, contracting and measuring end of life care (EOLC) service delivery across health and social care.

Aims

To facilitate a more collaborative approach to EOLC and increasing insight/empathy into the work of other professionals working in end of life care.

Methods

4½ days and 1 full day for course evaluation and project presentation

Day 1: Introduction to the programme/Audit/Research/Evaluation

Day 2: Multi professional

Day 3: Change Management

Day 4: Project work

Day 5: Advance Care Planning and project presentations.

Results

16 participants attended from learning disabilities, district nursing, palliative care and mental health providers.

Pre and post course questionnaires showed a confidence increase in use of audit, working across boundaries and team dynamics. The course was highly evaluated. Project areas: manual handling training programme for families/informal carers, design, end of life pathway for learning disabilities, research and review of the key worker programme, design of an effective and standardised document to communicate advance care plan wishes, re-launch of the Liverpool Care Pathway.

Discussion

EOLQM brought together staff from a variety of disciples and settings enabling them to discover and work together on projects to benefit patients at the end of life. By focussing on measuring and evaluating what we do across boundaries, it enabled participants to start to influence strategy in their own work setting.

Conclusion

EOLC is not just concerned with symptom control and communication skills. It also needs to be measured and evaluated and those working at the coal face have their part to play in this – not only through providing data but also designing how and what data should be captured.
Three years of living with grief – reviewing a series of meetings for people who have been bereaved
Authors: Smale Una , Spence Simon
Published: September 2011

Introduction

Highland Hospice Bereavement Support Service offers varied support to individuals and families. For the past 3 years, in order to widen the support options available and recognising people's differing needs, we have been offering Living With Grief, a time limited group-based support.

The current programme consists of:

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Weekly sessions of 2 h duration, offered over an 8 week period.

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Groups co-facilitated by two staff members; both accredited counsellors, with extensive group work experience.

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Group membership mixed in circumstances of bereavement, age, gender and ethnic/cultural background.

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‘Closed’ group membership; all members attending all meetings.

Aim

To review the development of the Living With Grief programme. Particular attention is paid to how the programme has adapted in response to both feedback from the participants and the facilitators' experience.

Method

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Review the current provision.

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Review participant evaluation over the 3 year period.

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Review facilitator experiences.

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Review changes already made as a result of this feedback and evaluation.

Results

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The programme has changed significantly over the 3 year period.

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The changes have resulted from participant feedback and facilitator experience.

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Feedback from later participants confirmed the desirability of the earlier changes and suggests a constructive dialectic process of development.

As a result of this project review we plan to continue offering Living With Grief as a regular feature of the Highland Hospice Bereavement Service. The findings and recommendations from this review will be of interest to other hospices involved in developing and/or reviewing group support provision in bereavement services.
Seamless service on the isle of man
Authors: Bloomer Christine
Published: September 2011

The hospice movement has engendered a multi-disciplinary team (MDT) approach to the delivery of palliative care and the evolvement of the Palliative Care Clinical Nurse Specialist (PCCNS). Advancements in palliative care and better symptom management have seen a change in the PCCNS role so that patients and carers are now often seen from diagnosis to post bereavement. It is ever more essential that PCCNSs are skilled in co-ordinating and communicating with the MDT, patients and families.

With this in mind in 2008 a review of the islands PCCNS service was carried out to identify any gaps in the service; explore user's perceptions and expectations; consider the team leader role and produce recommendations to service development.

At the time, four community PCCNSs were attached to GP surgeries within a geographical area, while two PCCNSs provided a service to the local hospitals. The comprehensive review confirmed that the service was valued by patients and health professionals on the island, but highlighted that more time was needed for the team leader to provide leadership, supervision and planning and for the PCCNSs to embrace education, audit and consultancy work.

It was felt that an integrated nursing approach (where the PCCNSs followed their patients both in hospital and the community) would eliminate duplication of effort in gathering information and relationship building, thereby releasing time for other duties and improving communication. Caseloads were redistributed and a 6 month pilot was initiated.

Service users and the PCCNSs were canvassed at the end of the pilot. The general feedback was that the patient experience was better and that communication and the PCCNSs job satisfaction had improved. The team elected to continue working in this new way therefore enhancing the patient and family experience and providing a seamless service.
Fundraising matters: communication skills training for non-clinical hospice staff
Authors: Russell Sarah , Jo Fernandes , Doughty Jess
Published: September 2011

Introduction

Communication skills training is traditionally directed towards clinicians. At St Francis we identified a need to support our fundraising staff in their confidence in their daily conversations. These conversations often included distressed bereaved relatives.

Aims

To increase the communication skills and confidence of fundraising staff in the community and public setting.

Methods

A ½ day interactive workshop using videoed role play with a Connected actor, facilitator and communication skills trainer. The role play was based upon scenarios provided by the fundraisers prior to the workshop. They completed a pre and post workshop confidence questionnaire and a follow-up one 3 months later.

Results

11 fundraising staff attended.

Scenarios revolved around distressed relatives (expected and unexpected), and questions about care and dying in the context of fundraising for the hospice. Pre and post course questionnaires showed an increase in confidence in challenging conversations. The workshop was highly evaluated.

Discussion

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Fundraising staff do not necessarily have the day to day experience of clinical conversations to draw upon, but bereaved families have the same expectations of them as clinical staff in terms of conveying empathy and compassion.

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There is a parallel agenda of empathy versus receiving a donation, eliciting a “story” or discussing a fundraising event.

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The communication challenges are similar to clinicians and the power of silence is a similar take home message.

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The advantages of using videoed role play include giving participants the chance to see and discuss things they might have missed first time around.

Conclusion

Fundraising staff have similar communication training motivation as clinical staff. The workshop was a worthwhile education event, albeit seeming too short – in the future it would be beneficial to mix more non-clinical staff to give a wider breadth of discussion and experience – this is planned for later in 2011.
Ultrasound scanning in a hospice setting – does it really alter patient pathways?
Authors: Nemeth Erzsi , Cate Woodwark , Sharon Chadwick
Published: September 2011

Introduction

Bedside ultrasound scanning in a hospice setting is a new initiative. Historically, the hospice has referred patients to the local hospital, requiring a 20 min journey accompanied by relatives or nurse and ambulance crew.

A review of patient experience, revealed that this transfer was often distressing and futile.

A donation allowed an Ultrasound Scanner to be purchased. Three hospice doctors attended accredited training with specific tuition in ascites detection and diagnostic bladder scanning.

Now all patients with possible ascites are scanned prior to drainage.

Patients with bladder problems such as anuria, oliguria, haematuria and bladder pain are also scanned.

Aims

To assess the clinical benefits of ultrasound scanning within our hospice. To aid clinical diagnosis, enhance experience and improve outcomes.

Methods

A retrospective case note study of all ultrasound procedures carried out within the inpatient unit and day hospice at St Francis. The clinical indication for each scan is noted. Scan findings and the clinical outcome is noted.

Outcomes

Patients were scanned for the following clinical indications:

Possible ascites.

Bladder problems.

Cholestatic jaundice

Training purposes.

Ascites scan assessment

Positive ascites scan= 7

Negative ascites scan= 11

Number of resulting paracentesis= 7

Bladder scan = 8

Abnormal finding noted= 2

Normal bladder noted= 6

Complications= 0

Discussion

Bedside scans prevent distressing transfer to hospital and unnecessary procedures when time is short. Patients feel this imaging is neither intrusive nor distressing. Future developments include video linking for instant radiological opinion, a new probe to assess for deep vein thrombosis and scans at home.

Conclusion

We have limitations with our brief training and have therefore developed links with the radiology team for feedback and support. Bedside ultrasounds are non-invasive and well tolerated, aiding diagnosis, safety and outcomes for patients with suspected ascites or bladder problems.
Psychological contracts of hospice nurses
Authors: Jones Audrey , Sambrook Sally
Published: September 2011

Aim

The aim of this research was to examine the context of psychological contracts of hospice nurses, to explore what they might contain, and also to establish how the contracts might be influenced, with a specific exploration of what may breach the contracts.

Background

The psychological contract is a cognitive perceptual model, that is, the contract is in the minds of the employees, and consists of the reciprocated obligations, expectations and contributions that exist between the employer and employee.

Methodology

The study involved in-depth interviews following a modified constructivist grounded theory approach, using the model proposed by Charmaz (2006). Using a purposeful sample, 10 nurses from four hospices across North Wales and the North West participated in the study.

Findings

Four main categories emerged within this study: type of psychological contract, how the contracts are formed, the contents and the breaches. The Psychological contracts held by hospice nurses appear to be complex, and analysis found potential multidimensional, multi-level and multi-agent contracting. The contents contained generic items, that is, items that may be seen with any employee in any organisation, however, there were idiosyncratic elements, these included detail of care, relieving distressing symptoms, recognising individual employees in the workplace, quality of care, time to care, and acceptance of reduced terms and conditions. Some of the more serious breaches/violations perceived by the nurses included: lack of access to education, inequitable treatment among staff, and some nurses felt undervalued with very little recognition of their contribution. Hospices should take these findings into account when considering the employer–employee relationship; failure to do so may lead to negative consequences for the organisation, for example reduced loyalty to the organisation, a desire to leave or a negative changes in the attitude or behaviour of staff.
An innovative approach to creating a hospice at home team
Authors: Whitmore Sally
Published: September 2011

Introduction

This project uses an innovative approach to creating a new Hospice at Home team. The team aims to deliver a service that can respond quickly with a flexible and adaptable approach to meeting the needs of people who are in the last week of their lives and who wish to remain at, or return, home. It also incorporates the needs of families and carers. The service does not offer aspects of care which require a Registered Nurse and therefore works very closely with Primary Healthcare teams.

The team comprises of a Registered Nurse Team Co-ordinator, Staff Nurse and 14 whole time equivalent Healthcare Assistants.

Aims

To keep decision making as close to the patient's situation as possible in order to deliver a fast, flexible and appropriate response to rapidly changing needs and situations.

To create a service that delivers not just personal care but which uses a creative approach to supporting people who wish to remain at home at the end of their lives.

Method

Developing the assessment and decision making skills of the Healthcare Assistants who deliver the care. This empowers them to assess, plan, deliver and evaluate patient's care needs directly.

Flexible approach to needs assessment looking at all aspects of patient's, and their families', requirements. Not just focusing on personal care of the patient but what the whole family situation requires in order for the person to remain at home. For example, house work, shopping, meal preparation, etc.

Utilising the Hospice volunteer base to meet needs that cannot be delivered by the Heath Care Assistants. For example, garden maintenance and simple household maintenance.

Evaluation

Project will be evaluated through the use of families and carer's satisfaction surveys and audit of the number of patient's who achieve their preferred place of death.
Introducing an end of life education programme in a mental health unit for the elderly
Authors: Cooke Caroline , Dixon Rachael , Broadhurst Deborah
Published: September 2011

Introduction

More people are dying with dementia. In recognition of this the National Dementia Strategy (2009) focuses on the provision of care for their end of life needs. Following an audit of patients referred from a mental health unit for the elderly to a hospital palliative care team, an end of life education programme was developed.

Aims

The aims of the programme were to help staff recognise impending death, promote competence and confidence in symptom management and communication around death and dying. Funding was obtained for 1 year from April 2010 through end of life care monies, and existing resources pooled to supplement the proposal.

Methods

The main elements of the programme were the introduction of the Gold Standards Framework (GSF), the Liverpool Care Pathway (LCP), 3-day communication courses and specialist palliative care placements at the local hospice. There was a lead for each element. A programme of ‘bite- sized teaching sessions’ and workshops was designed and coordinated by the Practice Development Team which incorporated the ‘wants and needs’ of the unit. Teaching was adapted for all staff and multiple teaching styles used. The LCP was modified as syringe drivers were not used on the unit. 14 staff were nominated from the centre to become End of Life Care Advisors with varying levels of expertise and representation from all the wards. The advisors received priority teaching and their role was to disseminate information, support others, maintain and update resource folders on the wards.

Results

Evaluations of every aspect of the project are showing positive increases in confidence and competence.

Conclusion

The project has been a catalyst for multi-disciplinary learning. The flexibility of teaching styles is innovative and potentially transferable to other settings.
Understanding life-threatening illness – exploring individual experiences of living with cancer
Authors: Taplin Sue
Published: September 2011

“A few decades ago, cancer was a topic shrouded in social silence. Today…stories of cancer illness have found a place in our culture. The emergence of this discourse means that those who become ill with cancer can expect some degree of acceptance and understanding. The same cannot be said, however, about all those who survive cancer. Despite the interest that is often generated by stories of survival…there still remain unresolved tensions for those who have lived beyond the acute phase of extreme experience.”

This study, which originates from my practice as a social worker in the field of palliative care and formed part of my doctoral studies, sought to uncover and explore some of these ‘unresolved tensions’ in the lives of those who are experiencing cancer as a long-term condition.

I aimed in this study to give individuals who were living ‘with and beyond cancer’ the opportunity to talk about their experiences, both during the treatment phase and beyond, in order to explore the meaning of this experience, and therefore to increase the body of public and professional knowledge in this field.

I conducted semi-structured interviews with 18 people who were living with cancer as a long-term condition, simultaneously analysing these narratives using a grounded theory approach.

My findings from this study were that, overwhelmingly, individuals experienced cancer as life-changing, not only in terms of their own personal development and attitudes to life, but also in how they related to the people around them, including health and social care professionals.

While recognising the individual nature of each person's experience, the findings of my study have provided an invaluable insight into the psychosocial needs of people living with cancer, which I aim to disseminate to professionals and policymakers, to increase understanding and enhance aftercare in cancer ‘survivorship’.
A service development to educate healthcare assistants about physical rehabilitation in an in-patient hospice unit
Authors: Atkinson Rachel , Jennings Sally
Published: September 2011

Rehabilitation is a specialty in its own right, with a powerful emphasis on inter-professional working to help patients improve their independence. Due to medical advances people with life limiting illnesses are living longer and even though they will not be cured rehabilitation has a vital role in improving their lives over the time they have ahead. This concept may seem strange in the context of palliative care but the goals of rehabilitation and palliative care are the same in helping a person to become as active and independent as possible.

The aim of this service development is to educate Healthcare Assistants (HCAs) to promote a physical rehabilitation approach in a 31 bedded in-patient hospice unit that focuses on independence.

A series of education and practice interventions were developed. They were implemented through group tutorials, display boards and clinical facilitation, with an evaluation of all of these strategies.

It has shown that the HCAs who participated found that their knowledge and confidence around the techniques increased. The impact of this service development however was difficult to measure due to poor uptake and evaluation of the educative strategies employed.

This service development has demonstrated that the education of HCAs has the potential to improve the rehabilitation of palliative care patients but that this needs to be delivered in a way that ‘fits around’ the daily work of HCAs and has to be recognised as an important part in the culture of the hospice.

Those who participated in the service development evaluated it positively, feeling that they were in the position to carry out the techniques and practice with the patients. A further outcome of the development is to consider different ways to provide the classroom teaching and clinical facilitation within the organisation to allow greater participation from staff
Advanced liver disease in a homeless population
Authors: Davis Sarah , Greenish Wendy , Kennedy Peter , Jones Louise
Published: September 2011

Introduction

Residents at St Mungo's with alcohol related liver disease frequently experience sudden deaths. There were no prognostic indicators to alert staff that a resident may be nearing the end of life and thus opportunities for possible interventions were not being recognised.

Aim

To identify whether residents who have advanced alcohol related liver disease show any clinical symptoms or behaviours as they are approaching the end of life.

Method(s)

Examined the summaries of all reported deaths at St Mungo's (Jan 2009>April 2010).

Reviewed 27 sets of case notes of residents with a history of alcohol abuse and possible liver disease

Held three focus group meetings with staff

Results

A combination of physical, psychological and behavioural symptoms occurred in residents with liver disease as they approached the end of life. Staff did not plan with residents for end of life care and palliative care interventions were minimal. Deaths were often sudden and the majority of end of life care was provided by secondary care.

Discussion

Staff need training to alert them to key changes in residents' condition, so they can anticipate deterioration and death and offer earlier support. This would provide staff with opportunities to discuss preferences for care and palliative interventions with residents. Bereavement support would benefit both staff and residents particularly following a sudden death and encourage discussions on care at the end of life.

Conclusion

Difficult to predict when a person with liver failure is in the dying phase. However there are increasing physical, psychological and behavioural symptoms which indicate that a resident is in the advanced stages of liver disease. Earlier interventions by staff would enhance the dying experience of residents.
Advanced care planning for children
Authors: Miller Michael
Published: September 2011

Introduction

Advanced care plans form many functions from acting as a vehicle for discussions to acting as a guide for provision of care in emergencies. Is it possible to satisfy these different demands?

Method

With the support of a grant from the DH as part of the £30 million funding, a full day meeting was held to develop a Care Plan for children in Yorkshire and Humber. Parent's views were considered in the morning and provider views in the afternoon. Examples of existing care plans were shown to participants and parents spoke about the difficulty in making decisions. The relationship between PICU and palliative care was discussed.

Results

The following outcomes were agreed:

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Care plans should be written for and held by parents

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Parents do not need to sign the care plans

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Care plans should include a guide to management of predicted symptoms

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There should be an agreed format of:

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Brief description of present condition

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List of contacts;

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Brief description of management of symptoms, fits, chest infections etc

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Management of slow decline

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Management of sudden decline

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Back page containing ‘tick box’ details of levels of resuscitation levels felt

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To be appropriate for the child.

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The meeting recognised that as the future is never known precisely, care plans need a degree of flexibility to be acceptable to all.

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Ideally there should be a mechanism to ensure care plans are reviewed and up to date.

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It was recognised that the initiation of such discussions is difficult and training would be helpful.

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A small leaflet for parents explaining what care plans are is to be developed.

Conclusion

The development of recognisable care plans for child will help end of life care for children as well as supporting their families.
Establishing a sustainable children's palliative care network in Yorkshire and Humber
Authors: Miller Michael , Box Debbie
Published: September 2011

Introduction

A Children's Palliative Care Network was established in Yorkshire in 2005 after the appointment of a Consultant in Paediatric Palliative Medicine. A strategy group helped to share information and created on a local pathway of care. One difficulty was establishing links with the commissioning process. Another was that it was not certain that the network fulfilled the needs of the local providers or supported families effectively. A third was the change to Regional Boundaries so that four more PCT's and two other Children's Hospices were included in the network.

The possibility of funding from the DH grant to Children's Palliative Care allowed us to explore these issues.

Method

A Doctor with a background in Palliative care was appointed to undertake a review of the network and contact GP's, nursing services and hospital services throughout the region.

Outcome

There was overwhelming support for a network. This should be supportive and informative as well as organising and linking with commissioning. It is recognised that some formal administrative support is necessary for the success of the network. There needs to be rotation of members to enable succession planning.

An Action plan of achievable projects has been developed.

There need to be better links with other Children's networks, including the PICU, Neonatal and neurology networks.

Conclusion

A strong network is an important aspect of ensuring equity of palliative care around the region. Implementing the recommendations of this report will help ensure its viability.
Partnerships with young people in palliative care
Authors: Connelly Val
Published: September 2011

Introduction

This Project is an attempt to diversify the hospice volunteer base using volunteers from ages 16–25 years in a specifically designed programme. Managed within the constraints of the National Curriculum the programme is an opportunity for volunteers interested in a Health and Social Care career to experience palliative care.

Aim

The main aim of the project is to promote the principles of palliative care provision to a wider audience within the community. The programme is keen to encourage young people from a variety of diverse backgrounds to volunteer and to create new intergenerational links with patients and their families while enhancing a CV or improving job prospects.

Method

A number of new volunteer roles and a Volunteer Induction Programme were developed. Young volunteers were recruited through schools, colleges and various agencies working in the community. Placements have been facilitated using established volunteers as mentors and were monitored and supported on an ongoing basis.

Results

Patients have benefited enormously from the involvement of young people with opportunities to learn new skills from volunteers some with additional needs. The link with a younger generation has offered a forum for sharing stories and experiences.

Volunteers have been able to access places at university, gain employment and build their skill base citing their experience of palliative care in a hospice setting.

Discussion

The project has been monitored throughout and evaluated on a yearly basis measuring personal outcomes and benefits to patients, staff and families. It has exceeded expectations in terms of interest in the scheme and commitment of volunteers.

Conclusion

Young people from a wide variety of backgrounds have made a worthwhile contribution to the quality of life of patients. They will take their experiences and spread the hospice message in the future.
Biometric access drug cabinets for personal controlled drugs in hospices
Authors: Griffiths Matt , Bunn Ray
Published: September 2011

The secure storage of controlled drugs (CDs) is defined in the Misuse of Drugs (Safe Custody) Regulations 1973. The 2007 Amendment specified its application to care homes which includes hospices. Compliant storage involves use of receptacles compliant with British Standard 2881.

The Home Office has confirmed that there are no exemptions to these safe custody storage requirements in care homes (personal communication 2011) although some approved local discretion is allowed in NHS trusts.

Spontaneous breakthrough cancer pain (BCP) is severe with a rapid onset and relatively short duration in most patients requiring prompt treatment with potent opioid analgesics. Treatment is with immediate release oral morphine or oxycodone or the newer faster acting oral transmucosal and nasal fentanyl preparations. Except oral morphine solution 10 mg/5 ml, these preparations must comply with safe custody CD regulations storage.

Healthcare professionals frequently cite treatment delay due to central retrieval of CDs, often distant from the patient, key locating, unlocking cupboards and completing administration audit. This results in patients in pain longer.

By employing self administration of medicines policies plus the development of a BS2881 compliant near-patient biometric storage cabinet, we have set out to empower patients in their own BCP treatment and reduce treatment delays. There is no legal requirement to witness CD self-administration.

Biometric cabinets are keyless with secure access by means of a thumbprint. IT cabinet link provides access authorisation and an audit trail. Lock-out times are programmable to govern frequency of access and repeat access. There are different cabinets for central ward or individual bed side location.

Pilot sites are being recruited for a trial and evaluation of the development. Organisationally agreed Standard Operating Procedures will govern the entire process in line with official requirements.

The outcomes of the pilot will be evaluated and published.

Development in association with Flynn Pharma.
Triage: An innovation in practice
Authors: Flynn Fiona , Watson Barbara
Published: September 2011

As the increase in demand for access to specialist palliative care services continues, methods to prioritise patients and carers with the greatest need becomes of increasing importance.

Aim

The aim of the project was to develop and implement a triage system for referrals into the Northern Ireland Hospice community specialist palliative care teams. One which would create a standardised process ensuring equity for patients irrespective of location, improve access to the service leading to prompt assessment based on patient need and overall improve the referral system to increase referrer satisfaction and the quality of patient care.

Method

The project consisted of two phases (1) a developmental phase and (2) an implementation and evaluation phase. During the developmental phase documentation design was required to capture essential information regarding patients and carers to aid identification of the patients prioity based on need. Using a triage assessment guide patients were scored using five categories- pain, symptoms, patient anxiety, psychosocial issues, and carer anxiety. A lower triage score indicated patients with less urgent needs are identified as priority three whereas a higher score indicates those patients whose needs are greater and identified as priority one.

Results

The introduction of the triage system reduced the estimated waiting time from 1–7 to 1–5 working days. Patients identified as priority one are being assessed within two working days from triage with many being assessed within 24 h of receipt of referral in triage. Those who are identified as priority two are being assessed within three working days and the less urgent priority three patients are being assessed within five working days.

Conclusion

This triage system established a consistent, reproducible assessment process and provides a useful tool to improve the community teams efficiency delivering tangible benefits for patients and carers.