bluuebunny/crossref_metadata_2025 huggingface dataset:
ICPCN reaching out to the world through advocacy, networking, information sharing and research
Authors: Boucher Suzanne , Marston Joan , Downing Julia
Published: March 2012

In 2005, when the International Children's Palliative Care Network was first constituted, there was limited awareness of the status of palliative care for children internationally and what services there were tended to be isolated and unconnected. The ICPCN set out to tug on all the international threads to find what services for children there were at the end of them. Six years on, through focused advocacy, networking, information sharing and research, the ICPCN has been able to build a clearer picture of the provision of palliative care for children worldwide as well as what training and education is available in the field. The ICPCN has also become a trusted conduit for information, a central networking point and, through its growing membership, has built up a reservoir of knowledge and experience upon which the rest of the world is free to draw. The ICPCN has surveyed what training is available worldwide and in response has piloted an eLearning project in order to provide much needed training in the field that is free and accessible worldwide. The ICPCN International and multi-professional Scientific Committee is making its mark by tackling issues related to children's palliative care, a much under researched field. While there is still much work to be done, the need for children's palliative care is becoming recognised as a reality worldwide and the ICPCN will seize every opportunity possible to provide relevant training and advocate for its inclusion in the healthcare policies of every country. It is only by networking and reaching out to help and support one another that we will finally reach and move beyond a tipping point. The ICPCN is committed to attaining this goal.
A consensus approach is helpful in gathering disparate evidence, and expert opinion to informational guidance for staff responsible for care after death (last offices)
Authors: Wilson Jo
Published: March 2012

Background

Despite 500,000 deaths p.a. in England and Wales, the National Nurse Consultant Group (Palliative Care), National End of life Programme and Department of Health identified inconsistencies and disagreement about the care of the adult who has died.

Aim

To produce nationally, multi-professionally agreed guidance, that (A) was sensitive to roles/responsibilities of health/social care professionals (B) offered clarity ensuring consistency of care and appropriate training.

Methodology

Using a consensus approach, four rounds of decision making occurred (Joneset al1995). The National Nurse Consultant Group (Palliative Care) provided advice on the only clinical benchmark The Royal Marsden Guidelines (Dougherty and Lister 2008) (round one). The guidelines and advice were broken into statements. Fifty national stakeholder organisations were invited to comment, provide evidence or identify aspects of care not covered. Thirty-five organisations responded. Statements were amended where there was consensus or legal guidance (round two). The second round demonstrated areas of little evidence or consensus for example, containing leakage, identification, or preparation of the deceased. A national stakeholder event discussed these issues (third round of consensus) and outcomes were incorporated and re-circulated (round four of consensus). Over one hundred individuals representing national organisations took part in ‘Guidance for staff responsible for care after death (last offices)’, issued in April 2011, with the endorsement of the Royal College of Nursing and the Royal College of Pathologists. Feedback is that the guidance is welcomed and well received.

Conclusion

Consensus methodology is helpful and systematic in developing national guidance when the evidence base is disparate and poor, as it draws together professionals enabling debate of clinical knowledge (as source of evidence) and illuminates benchmarks for clinical quality.
The significance of psychosocial invervation in palliative care
Authors: Evelyn Octivia Nazziwa
Published: March 2012

Introduction

Hospice Africa Uganda offers palliative care to both cancer and or HIV/AIDS patients and their families with the aim of improving the quality of life. Palliative care is an approach that improves the quality of life of patients and their families facing problems with life threatening illness through prevention and relief of suffering by means of early identification and careful assessment and treatment of pain and other problems. Problem statement: Psychosocial issues like, lack of self-esteem, hopelessness, loss of job, lack of care and love from beloved ones, lack of school fees manifest as physical pain and the underlying cause s overlooked. The impact of the disease burden on both the family and patient need both physical and thorough psychosocial assessment and interventions of individual or family therapy.

Project Description

Individual and family therapy intervention helps identify the available resources and unused opportunities, which can better the patient's quality of life. Offering counselling and education with the knowledge of psychosocial care can assist in controlling patient's pain. Lessons Learnt: Psychosocial assessment and interventions if done appropriately can improve on patients' quality of life.

Conclusion

Therefore, patients with terminal illness do not only suffer from physical but also experience psychological and social pains that need to be addressed.
Using a carer survey to improve bereavement care services within an acute trust
Authors: Harrison Graeme , Whitfield Andrea
Published: March 2012

Since 2002 Blackpool Teaching Hospitals NHS Foundation Trust has provided opportunities for the bereaved to comment on experiences of care for their loved one before and after death. Response rates were poor with an average of 1-2 responses every week. There was clearly a need to do more to gather the views of bereaved carers. In 2010, a new Bereavement Survey was developed using some of the questions from the VOICES (Views of Informal Carers – Evaluation of Service) survey with kind permission. The survey asks a series of 20 questions and includes a free text box. Training on how to offer the survey to relatives was provided. A covering letter makes it clear that there is no obligation to complete the survey or include personal details. The letter offers support for the bereaved both in completing the survey and for any concerns following the death. Since April 2011, 75% of all bereaved relatives have been offered the Bereavement Survey. Responses have increased to a weekly average of 5-10. These responses are reviewed weekly. Concerns that need an urgent response are identified. A monthly report is produced for each division to feedback comments to staff as well as identify actions needed to make improvements. These reports are monitored by the Trust's Bereavement and Carer Group. Emerging themes include bereaved relatives recognition of staff commitment to providing quality care at end of life. The majority felt that their relative was cared for in the right place that is, hospital although many wished that side rooms could have been available. Where concerns have been raised, these generally are focused around lack of effective communication rather than standards of physical care. Significant service improvements have included the pilot of an ‘Integrated Care after Death Pathway’ and development of trust wide Bereavement Care Standards.
A study of perceptions of spiritual care among hospice healthcare assistants
Authors: Ashworth Jonathan , Whitfield Andrea
Published: March 2012

Background

Spiritual care is a core component of holistic palliative care assessment. Previous research has explored spiritual care from the perspectives of doctors and trained nurses within palliative care units. Healthcare assistants (HCAs) have most contact with patients during an inpatient admission, and it might be argued have the greatest opportunity to deliver spiritual care. This study describes perceptions of spiritual care among HCAs.

Method

Qualitative semistructured interviews with HCAs in an in-patient hospice setting on their perceptions of spiritual care were conducted (n=12) as part of an undergraduate special study module. Internal approval for the study was obtained. A questionnaire was devised based on those used in previous studies. One-to-one informal interviews with HCAs took place over 3 days in July 2011. Interviews explored HCA's perceptions of spiritual care.

Results

A number of key themes were identified and will be discussed in detail. Most HCAs identified spiritual care as being part of the holistic care of patients and involves what is important to the patient. None of the respondents interpreted spiritual care as religious care only. Respondents identified their role in delivering spiritual care as spending time with, and listening to patients. Time constraints, noise, and staffing levels were identified as barriers to spiritual care. HCAs were apprehensive at the prospect of additional spiritual care training.

Conclusion

HCAs are ideally placed to provide spiritual care in their daily contact with patients. Often they do not recognise the crucial role that they play in the delivery of spiritual care, but rather provide spiritual care through intuition and experience. Following on from this study spiritual care training will be provided for all staff within the inpatient unit and the impact of this will be evaluated.
Spiritual assessment and provision – an audit of current practice
Authors: Taylor Emma , Gaunt Kathryn , Groves Karen , Whitfield Andrea , Baldry Catherine , Gray Dawn
Published: March 2012

Background

Assessment of patients' spiritual needs and appropriate spiritual support is fundamental to holistic care, particularly towards end of life. Merseyside & Cheshire Cancer Network (MCCN) implemented spiritual awareness education in response to a spiritual care audit (2006), which demonstrated that staff felt under-skilled in this area. The results of the second cycle of this super regional audit are presented.

Method

The audit consisted of three parts a) telephone survey of spiritual care resources within specialist palliative care services (SPCS), b) web-based survey determining healthcare professionals (HCPs) perceptions of practice, c) case note audit determining actual practice.

Results

(A) The majority of SPCS inpatient units have a spiritual care policy; this is not the case for community services. All inpatient settings provided multi-faith quiet spaces; directories of spiritual care resources were mainly available. Inpatients had access to suitably qualified spiritual care givers more often than community settings. (B) 138 HCPs completed the survey. More than 85% assessed spiritual needs and 80% assessed religious needs some or all of the time. Less than 10% use specific assessment tools. Over 50% had undertaken specific spiritual support training. Confidence in assessment and provision of spiritual care had increased, but religious support less so. There was improvement in confidence levels of those who had undergone spiritual care training compared to those who had not. c) The case note audit revealed fewer staff recorded religious affiliation (78%) than in 2006 (91%); the recording of spiritual needs (72%) had increased (60%).

Conclusion

Community services are under-resourced with respect to spiritual care support. Confidence in spiritual assessment and support has improved since 2006 and appears to be greater in those who have undergone training. The poorest area of documentation is of religious need and on-going religious care. MCCN guidelines for assessment and provision of spiritual care have subsequently been revised.
‘For the moment’ – a local initiative
Authors: Calcutt Lesley , Frien Christa
Published: March 2012

Immediately following a loved one's death is a period of shock, fear, helplessness and confusion which can result in calls to emergency services precipitating inappropriate actions. The ‘for the moment’ innovation evolved from the distressed response of several carers who made 999 calls following a home death. It aims to prevent these unfortunate circumstances, subsequently reducing unnecessary distress. The ‘for the moment’ leaflet is primarily designed to give the family/carer confidence that nothing needs to be done immediately following the death of a loved one at home. It is, when folded, a simple double-sided A5 document with a choice of sympathetic images on the cover. This 4-page leaflet holds sensitively worded advice, alongside information previously completed by family regarding patient wishes, choices and other details. These details may include family members, funeral director, GP and out of hours contact numbers. The over-arching aim is to provide encouragement for the family/carer to take time to say their ‘goodbyes’. Fitted into an acetate pocket and secured with a magnet it is then attached to a fridge door or side panel within the home, becoming easily accessible ‘for the moment’ following a death. The pocket may hold additional information such as the ‘Treatment Escalation Plan’. These important details become commonly accessible and recognised by all health professionals. The ‘for the moment’ initiative, when introduced to patients/families/carers, helps to facilitate those difficult conversations and assist in forward planning; while possibly creating peace of mind for families/carers. Additional benefits are that ‘at the moment’ following death valuable time is taken to ‘grieve’ not to ‘do’. The cost of each'for the moment' is minimal, while the positive benefits to the patient/family/carer experience are considerable. Add to this the savings achieved from reduced calls to emergency services and the long term advantage is endless.
Embedding the principles of GSF in primary care: using an ambulance/out of hours communication form as a catalyst for improved communication across the end of life pathway
Authors: Westwood Debbie , Curtis Claire , Blaine Felix , Bagshaw Kerry
Published: March 2012

Background

A good communication pathway has been established through the development of an out of hours communication form, which is held at the new West Midlands Ambulance Service (WMAS) hub in Leamington spa. The information communicated on this form, primarily by GPs, enables WMAS to communicate with its crews regarding any advance care plans or special needs of patients on the palliative care register that they may be called to. The form is also sent to the out-of-hours primary care service (Harmoni) to be added to their special notes system.

Outcomes

This information is often vital in enabling paramedics to make decisions on whether to transfer patients or to enable them to remain in their own home.

Results

A preliminary study showed the cost saving in transportation to the acute trust and in acute trust admissions to be £74 000 in the first six months of its introduction. A full year's evaluation is awaited and will be available shortly. In real terms this means that 25 patients were not conveyed to hospital, as a direct contribution of the register being in place and the contributions of those healthcare professionals who submitted the relevant DNAR/special notices regarding their patients. Further developments to this scheme are planned. As both WMAS and Harmoni use Adastra systems, an electronic template has been developed that will allow GPs to fill out one form that will communicate with both organisations. The plan is for this to be accessible by the acute trust, to further enhance communication about the patients' wishes at end of life. Two surgeries in Worcestershire have the electronic end of life special notes template and are currently piloting it. Work needs to begin with Adastra nationally to create interface between Harmoni Adastra and WMAS Adastra.
Audit of assessment of anxiety and depression in older inpatients with end stage COPD
Authors: Brown Davina , Athorn Katie
Published: March 2012

Background

Anxiety and depression are common in patients with COPD, particularly in those with physical disability and more severe disease. It is under-diagnosed and under treated yet has profound consequences on the patient and their carers resulting in increased social isolation, heightened sensation of dyspnoea, poor treatment tolerance and increased hospitalisation. There are validated screening tools for anxiety and depression in COPD but they are underutilised. When patients present with an exacerbation to secondary care services, this becomes an ideal opportunity to assess for anxiety and depression.

Aims

To evaluate our current service in assessing older (over 78 years) inpatients with end stage COPD, presenting with an exacerbation, for symptoms of anxiety and depression as recommended by NICE guidelines.

Method

Retrospective clinical case note audit of eighteen older patients with an inpatient admission resulting from an exacerbation of COPD.

Results

Sixteen of the 18 patients had WHO performance status of three or four indicating physical dependency. Only one patient had a prior diagnosis of anxiety and depression and was on treatment. Despite medical and nursing observational entries in the clinical notes indicating possible underlying depression and/or anxiety in seven patients (‘low mood’, ‘poor eye contact’, ‘anxious’), none of the 18 patients had a recorded mental health assessment or completed screening tool for identification and diagnosis of anxiety or depression.

Conclusion

Despite extensive evidence that anxiety and depression is common in patients with end stage COPD and has significant consequences on their quality of life, we are not following national guidelines and assessing for anxiety and depression in our older inpatients presenting with exacerbation. We see this as a missed opportunity to intervene to improve symptoms and optimise physical and psychological functioning towards the end of life. Our audit presents plans for service development and improvement and re-audit schedule.
Rapid access to trained carers at the end of life (RACE)
Authors: Westwood Debbie , Curtis Claire , Blaine Felix , Bagshaw Kerry
Published: March 2012

GPs, consultants, district nurses, palliative care clinical nurse specialist's and relatives, identified the need for access to a suitably trained carer/Healthcare Assistant (HCA) to be available at short notice for patients at the end of life who's current care arrangements become untenable. It was felt that this would enable patients to remain at home if appropriate, and also facilitate rapid discharge from the acute trust. The pilot of the new RACE (Rapid Access to Trained Carers at End of Life) service was launched December 2010. The service is currently provided by the three hospices in the county. It provides a single number for professionals to phone to arrange care at short notice. Two carers are available each night. In its first 6 months the service provided care to 60 patients and prevented at least 20 admissions. Feedback from service users has been overwhelmingly positive for example: ‘What a brilliant service. I was at my wits end from lack of sleep, my husband who has cancer was cared for faultlessly. I have nothing but praise for this service – please continue’ Wife of patient in Bewdley. There are opportunities to improve the cost effectiveness of this service, and access to appropriate carers at the end of life, through the development of a county wide single point of access for health 24/7. RACE itself has been recognised as good practice nationally, and as a consequence the RACE team have been invited to present a paper at the Help the Hospices National Conference at the end of September 2011.
How can we improve palliative care knowledge, skills and attitudes in nursing homes … with no extra staff, no extra time and no extra costs?
Authors: Harris Dylan , Jones Kim , Durham Cheryll
Published: March 2012

Introduction

Generic palliative care knowledge, skills and attitudes vary significantly in nursing home staff. A previous education model of 1 day study days (provided by our palliative care team) did not seem to have a lasting impact: knowledge/skills were not retained; high staff turnover meant ‘educated’ staff were lost, and, the focus on palliative care faded behind other priorities.

Method

An alternative model has been successfully piloted in three homes, with four core elements: (1) Little but often: a short teaching session monthly which representatives from each home attend. This reduces the impact on the rest of the working day so increasing attendance, keeps palliative care on the ‘radar’ and accommodates a high turnover workforce. (2) Focus on generic palliative care skills: communication; recognising dying; End of Life pathway. (3) Patient focused and reflective: each session is built around reflection on patients at the homes, previous difficult conversations form the basis of communication skills role-play. (4) Ownership by nursing home staff: who set the learning objectives, identify a link nurse at each home and maintain a ‘resource box’ for use with palliative patients.

Results

This education model has had a direct impact on: (a) confidence in core palliative care competencies (self-rated by the attendees); (b) clinical care (using use and completion of the end of life care pathway as a marker); (c) advance care planning with care home residents; (d) referrals to specialist palliative care (which have become notably more appropriate and timely but with an overall reduction in workload at these homes as they are now competently delivering generic palliative care themselves).

Results/Conclusion

This model is cost neutral, time efficient (volume of work for specialist palliative care from these homes has actually reduced) and has had a direct effect on improving confidence and skills in generic palliative care.
A unique approach to teaching palliative care
Authors: Ting Ruth , McKenna Maria , Gunn Hannah , Srivastava Leena , Pennington Susan
Published: March 2012

Background

Peer and near-peer teaching is now a recognised approach in medical undergraduate education with increasing evidence to support its efficacy.

Aims

(1) To establish a teaching day delivered by palliative care trainees for doctors-in-training in other specialties. (2) To show that trainees in palliative medicine are effective near-peer and peer-led tutors. (3) To demonstrate impact of teaching day on learners' knowledge and confidence.

Methods

A programme was designed to cover core palliative care topics contained within the curricula of other specialties. Participants completed a pre and postcourse questionnaire of clinical scenarios to survey their knowledge and confidence; and a satisfaction questionnaire.

Results

Thirty-five doctors attended the teaching day. Confidence and knowledge ratings increased at the end of the teaching day. Results of the satisfaction survey were overwhelmingly positive.

Limitations

This cohort was not fully representative of all doctors in training.

Discussion

This study does not determine whether there is sustained impact on knowledge and confidence of participants; this could be assessed in future teaching programmes using the same confidence and knowledge questionnaire 8 weeks postcourse. Participants' knowledge and perceived confidence in a learning environment may not translate into clinical ability.

Conclusion

A teaching day delivered by palliative care trainees for other doctors-in-training, is achievable and positively received. Feedback showed trainees are effective and approachable tutors. There was a demonstrable positive impact on knowledge and confidence immediately following the teaching day. This method of teaching enables both teachers and participants to achieve curriculum objectives. Further research is required to further explore whether peer and near peer teaching is more acceptable and effective than consultant teaching and reasons why this may be so.
NHS Scotland DNACPR and CYPADM integrated policies – development of quality measures
Authors: Spiller Juliet , Kiehlmann Peter , Davison Hilary , Murphy Dermot , Wilkie Rosalie
Published: March 2012

Background

In May 2010 National Health Service (NHS) Scotland published Europe's first fully integrated national policy for Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision making and communication in adults. The Scottish Government led the development of this policy, based on previous work from NHS Lothian, in response to a specific recommendation by the Public Audit Committee following the Audit Scotland publication ‘Review of Palliative Care Services in Scotland. Living and Dying Well’ the national action plan for palliative care in Scotland also requested an integrated approach to DNACPR. All Scottish Health Boards committed to implementation of the policy by October 2010. Shortly after this the Children/Young People Acute Deterioration Management (CYPADM) Policy was also published and implemented across Scotland.

Aims

These integrated DNACPR policies aim to prevent inappropriate, futile and/or unwanted attempts at CPR. They are intended as a positive step to help a person's wishes to be followed at the end of life irrespective of whether they are being cared for in hospital, hospice, care home or in their own homes. This specific work aimed to develop measures to assess the impact of these policies on patient care across Scotland.

Method

Health Improvement Scotland undertook the ongoing review and evaluation of the DNACPR and CYPDM policies in consultation with a core multidisciplinary group including representatives from all Health Boards, the Scottish Ambulance Service, the Care Commission and NHS 24. Measures have been developed and agreed which will establish the extent to which these policies are impacting on patient care with regard to inappropriate CPR attempts, expected death and anticipatory care planning.

Conclusions

Policies which facilitate an integrated approach to DNACPR decision-making and communication in adults and children have been implemented across Scotland. Quality measures have been developed to assist Health Boards in establishing the impact of these policies on patient care.
An alternative approach to running an effective palliative care conference
Authors: Salt Susan , Matty Rosalind , Watt Carolyn
Published: March 2012

Hospice 23 is a small charity that runs conferences for any professional from any discipline who works in any palliative care setting. Its mission statement is, ‘enabling, empowering and encouraging people who work in palliative care’ It runs 3 day residential conferences looking at key themes in palliative care. Each conference is carefully constructed to allow the theme to be developed in depth and is examined form a wide range of perspectives. Expert speakers from different professional backgrounds and from overseas share ideas and thoughts, followed by questions and free ranging discussion. Each conference aims to have sufficient space within it for the delegates to reflect and debate the theme and examine how the issues apply to them and their organisation. Particular emphasis is placed on thinking outside the usual professional boundaries and care is taken to look at spiritual aspects as well as psychological and physical areas. There is a unique opportunity within each conference to consider personal spiritual needs as well as learning needs. Recent themes have included – walking the tightrope, balancing conflicting needs and building bridges within palliative care across organisations, professions and disease groups. Response to the conferences is overwhelmingly positive and can summarised by the quotes from some of the evaluation forms ‘A thought-provoking event – I learnt a lot’ ‘I have gained so much educationally and spiritually’ It was an inspirational conference and I met some inspirational people. ‘I learnt so much’ Further evaluation needs to be carried out to look at the long term benefits of attending this style of conference.
An end of life resource pack to facilitate learning & delivery of end of life care in the community
Authors: Wenham Sarah , Au Gillian , Martin Michelle
Published: March 2012

Background

Easily accessible training and education for all healthcare staff is essential to ensure ‘high quality care for all at the end of life (EoL)’ (EoLC Strategy 2008). With the projected increase in UK mortalitys and strategic drive to facilitate patients to be cared for and die at home, primary healthcare teams need to be up skilled to deliver good EoLC in the community. Provision of high quality, up-to-date resources, that are easily accessible at the point of patient contact, will facilitate the embedding of learning into everyday clinical practice and translate into tangible improvements in patient care.

Aim

To assess the impact of an EoL Resource Pack as an educational tool for GPs.

Method

A multidisciplinary group of clinical experts developed an innovative EoL Resource Pack, containing core resources (including local prescribing guidance), EoL Care tools, and additional resources (regarding local voluntary agencies). The packs were distributed to every GP practice across the healthcare economy during an educational practice visit. In addition, each GP also received personal copies of the key guidance documents. The impact of these resources was assessed from feedback received, and the data was analysed using simple statistical methodology.

Results

GPs perceptions of the pack will be presented with regards to: • Educational usefulness • Impact on patient care • Role as a teaching tool Facilitating factors and barriers to implementation, along with the wider influence of the pack within the healthcare economy, will be discussed.

Conclusion

The pack has been demonstrated to be an innovative, effective and sustainable educational resource that not only facilitates improved patient care at the EoL but is also a useful teaching tool. The success of the resource pack among GPs has lead to its distribution to all healthcare professionals across in locality, and its wider adoption across the region.
Does peer led education have a role in teaching medical students about palliative care?
Authors: Nwosu Amara , Mason Stephen , Roberts Anita , Hugel Heino
Published: March 2012

Background

The number of medical students in the United Kingdom is increasing. An increase of medical students will invariably impact on palliative care institutions required to organise teaching sessions for students. Accordingly, novel studies have previously highlighted the educational benefits of peer-led learning and peer-marking of examinations. However, limited data exists about the educational value of students writing their own exam questions and sharing these with other students.

Aim

To evaluate the potential for medical students to learn about palliative care through the process of writing examination questions.

Methods

Fourth year medical students on a palliative medicine rotation were invited to write a short answer exam question in a similar format to the official examination run by the medical school at the University of Liverpool. Questions, selected by the teaching co-ordinator, were based around topics outlined in the palliative medicine syllabus. The questions were checked for accuracy and applicability by the co-ordinator and then distributed to students. The answers to the student generated questions were discussed in a feedback forum at the end of the rotation.

Findings

From a possible sample of 36 participants, 20 students took part in the exercise. All students agreed the exercise was beneficial to their learning and was in-keeping with the problem-based learning (PBL) medical curriculum. When asked whether the task was too much additional work 18 (90%) disagreed and 2(10%) agreed. Eight (40%) of the students felt more confident in passing the official medical school examinations while 12 (60%) were not sure. Overall the students enjoyed the exercise with 19 (95%) indicating they were keen to repeat the exercise in the future.

Conclusion

The evaluation of the Exam Writing task demonstrates that such exercises may be popular with medical undergraduates and could complement the delivery of palliative care teaching.
Enabling positive transition: innovative training to support adult specialist palliative care (SPC) teams to care for young adults with life-limiting conditions including complex needs
Authors: Lidstone Victoria , Marsh Sheila , Hayes Jo , Taubert Mark , Thompson Catherine
Published: March 2012

Background

The number of children with life limiting conditions surviving through childhood and requiring access to Adult SPC services has dramatically increased over the last decade. Previous research has identified that Adult services are willing but concerned about looking after these young adults, many of whom have non-malignant diagnoses and have needs unfamiliar to adult services. This paper describes the development of a programme to address this issue, to improve the experience of the young people accessing adult SPC services, and support the staff delivering the care.

Aims

To develop an innovative programme of training to up-skill the multidisciplinary SPC teams. To involve young adults in the development and delivery of the programme. To ensure the content of the training is relevant and covers physical, psychological and social areas. To improve the experience of young adults accessing adult SPC services To create a programme that is potentially transferable and deliverable to other adult SPC teams across the UK.

Methods

The project is being taken forward through joint working between a Children's hospice and an Adult Hospice. The content of the programme is being developed through the use of focus groups including young people with SPC needs, their families, staff from a local residential school caring for young adults with complex disability, staff from Hospices for young adults, and from the local Children's and Adult Hospices involved in the project. The delivery of the programme will include formal and informal learning, guided reflection, shadowing placements and a’service change' project relevant to the attendees. Young people will be involved throughout, from development to delivery and evaluation. This study describes the process by which the programme was designed, and reports back on delivery of the first part of the pilot.
Moodling through: the virtual world of the palliative medicine trainee
Authors: Marley Kate , Gaunt Kathryn , Groves Karen , Coackley Alison
Published: March 2012

Background

Trainees in Palliative Medicine in the Mersey Deanery require experience of a variety of work settings during training which leads to them being scattered within the region. Some services have only one trainee and there are few opportunities for the trainees to meet. Regular contact between trainee colleagues provides the benefit of peer support in an emotionally challenging specialty. Informal discussions and exchange of clinical and educational information can be maintained and there are opportunities to discuss new developments within the specialty with colleagues at a similar level to oneself. In the current economic climate UK health chiefs are striving to reduce cost in all areas of healthcare including study budgets and trainees must be creative in their efforts to fulfil their curriculum requirements. Addressing the problems: To enhance the educational and supportive contact between trainees, an online electronic learning platform has been developed specifically for Mersey Deanery Palliative Medicine trainees. The platform used is Moodle, a free and open-source virtual learning environment. Trainees have a personal login and password and are then able to access: • Links to resources and websites covering the Palliative Medicine curriculum and e-portfolio • A monthly journal club • Fora for discussion of challenging anonymised clinical cases and provision of peer support. • A revision area for trainees sitting the specialty examination • Calendar marking important dates for trainees Progress Report: The website is used regularly. Trainees have more contact with each other than previously and trainees in different locations are participating in online clinical discussions. There are over 200 trainee activity logs per month across the site and there have been over 2800 activity logs since the site was set up in March 2011. Formal evaluation will take place at the end of the first year of the site's use.
Sustainable impact through a network audit programme
Authors: Coackley Alison , Raj Julie , Mc Kenna Emer , Dickman Andrew , Ellershaw John
Published: March 2012

Background

It can often be difficult for audit to make a sustained difference to clinical practice across and between organisations. The Merseyside and Cheshire Palliative Care Network Group was initially formed in 1995 and consists of individuals involved in specialist palliative care across the network who are based in community, hospice and hospital settings. The strength of the group lies in the multi disciplinary representation and the on-going enthusiasm of the various teams to participate in the projects.

Method

There are bi-monthly audit meetings with five audits and one planning session each year. The audits are a combination of new audits, regional audits (which look at previously audited topics) and non symptom control subjects.

Results

Each meeting attracts approximately 60 healthcare professionals plus an external expert. The presentation includes a literature review, audit results and a discussion around standards and guidelines. Regional audits complete the cycle by assessing group performance against previously developed standards. Dissemination is achieved at national and international level. Every 3 years, the guidelines are collated into a book which is part of the core formulary for the Network. It is now in the 4th edition and contains 43 different topics. Each chapter is referenced with levels of evidence and grades of recommendation.

Conclusion

The book acts as a resource for professionals and is applicable to those caring for cancer patients and other forms of advanced disease. It encourages the setting and monitoring of standards in palliative care and through the audit programme promotes clinical excellence in end of life care.
A training initiative to improve end of life care in the care home setting
Authors: Roberts Anita , Phillips Sharon , Howard Jan , Astley Ann
Published: March 2012

Background

The End of Life Care Strategy (DH, 2008) emphasised the need to raise the quality of care provided to people dying in care homes. Many residents die in hospital following unnecessary emergency admission hours or days before their death. Accordingly, there is a need for care home staff to receive necessary training and support to ensure the provision of good end of life care, reduce the number of unplanned hospital admissions and enable more people to die in their place of choice.

Aims

A model training programme was developed to provide education and training for care home staff to enhance their skills and knowledge. This provided the potential to improve the quality and standard of end of life care and reduce unnecessary hospital admissions.

Method

All care homes (n=97) within a North West PCT were invited to participate in the training programme. Selected staff (Key Champions) from participating care homes were surveyed to gain understanding of their knowledge and practice. Subsequently, the training programme consisted of a series of workshops and participants were required to complete consolidation tasks in between workshops. The tasks directly related to the topics covered within the workshop and provided opportunity for participants to demonstrate transfer of knowledge to the Care Home environment. Participants were encouraged to meet regularly with their Manager to discuss progress. The Project Team reviewed all tasks completed by participants and provided written and verbal feedback.

Conclusion

The programme is due to complete at the end of the 2011 and will be evaluated to establish whether project aims have been achieved. The evaluation will include a Training Needs Analysis, Self Reported Confidence Scale, and Staff Questionnaire. It is anticipated that this initiative will increase care home staffs' ability and confidence in providing effective end of life care.
‘I worry about my family getting it’: are we ignoring patient's agenda at the end of life?
Authors: Baker Nicola , Armour Kathy , Meystre Chantal , Clifford Collette
Published: March 2012

There is increasing interest globally in the concept of ‘health promoting palliative care’ which aims to incorporate public health messages into palliative care services. However, there has been little emphasis on the prevention of ill health in palliative care. The role of palliative care in providing family-focused support, throughout a life limiting illness and into bereavement, means that opportunities to promote health in relatives and carers may be greater than in many other settings. Being a carer and subsequent bereavement can negatively impact on physical and emotional health. Furthermore, relatives of cancer patients are at increased risk of cancer themselves through shared genetic, environmental and lifestyle factors. While studies have evaluated family caregivers' requirements in terms of psychological support and information, none have focused on addressing their physical and emotional health needs. Few studies have looked at information needs from the wider family perspective. We performed a literature review, pilot questionnaire study involving patients, carers and hospice staff (for which MREC permission was obtained) and family focus groups, to explore the potential of a palliative care, family-focused health promotion programme. The literature describes leaving a ‘healthy legacy’ as an important part of fostering hope in cancer and palliative care patients. Patients in our pilot study and focus groups described concerns for their family's health and valued opportunities to discuss these. It was found that relatives and carers would welcome more information regarding their health and emotional wellbeing, but concerns were raised particularly by hospice staff. We will use the results of our investigations to inform further qualitative studies and to define the potential benefits of, and barriers to a health promotion programme aimed at families of palliative care patients.
Introduction and evaluation of an upskilling programme for GPs
Authors: Pegrum Helen , Naismith Jane , Brundish Jane
Published: March 2012

In response to the educational needs of local GPs, as highlighted in their professional development plans and experience from day to day practice in palliative care, we set up a GP upskilling programme to improve their knowledge, skills and confidence in specialist palliative and end of life care. The second aim was to improve patients' palliative and end of life care experience in the primary care setting. This new stand alone course offered a practical educational programme. It comprised nine taught sessions each session lasting 2 h incorporating a formal lecture followed by a facilitated discussion focusing on cases from practice. Participants were asked to implement a Palliative care initiative within General Practice. They had to pick an area of palliative care within their practice for example, reviewing opioid prescribing or improving ‘Out of hours’ communication. They looked at current practice, implemented a change and assessed its effect over the following 8 months, presenting the results at the tenth session. Following the course attendees would be able to: 1. Manage common palliative care symptoms effectively in the community. 2. Deal with palliative care emergencies. 3. Have a clear understanding of the End of Life Care strategy and how it can be used to support end of life care in practice. 4. Identify which patients may benefit from certain interventions for symptom control for example acupuncture, nerve blocks, chemo and radiotherapy Evaluation: Each session was evaluated and the programme was adapted in light of participants' comments. For example, increased syringe driver training. End of course evaluations showed high satisfaction and learning. A further questionnaire was sent out 4 months after course completion showing increased confidence and on-going learning. In the future we would like run a series of master classes and set up a palliative care interest group to cement and further the learning.
Prevalence of life limiting illness in children and young people in the UK
Authors: Fraser Lorna , Miller Michael , House Martin , Hain Richard , Norman Paul , McKinney Patricia , Parslow Roger
Published: March 2012

Background

Life-limiting illness describes conditions with no reasonable hope of cure that will ultimately be fatal. There is little national or local data are available to estimate the burden of these conditions.

Methods

An extract of inpatient Hospital Episodes Statistics (HES, England), Scottish Morbidity Records Inpatient activity database (Scotland, SMR 01), inpatient Patient Episode Database (PEDW, Wales) and Hospital Inpatient Statistics (HIS, Northern Ireland) were obtained (2000/01–2009/10). Children (0–19 years) with life-limiting conditions were identified within these datasets by applying a customised coding framework of ICD-10 disease codes. Prevalence per 10 000 population (0–19 years) was calculated by age, diagnostic group, ethnicity, deprivation and region for each year.

Results

Overall prevalence in England in 2010 was double previous estimates at 33 per 10 000 population (0–19 years). Prevalence was highest in the under 1 age group and decreased through the age bands. Male prevalence was significantly higher than in the female prevalence in all years. The highest prevalence was of congenital anomalies with the lowest prevalence in circulatory and gastrointestinal diagnoses. The overall prevalence rates differed between the countries within the UK but the patterns seen for age, sex and diagnostic group were similar. The ethnicity data was only available for England: prevalence (per 10 000) in the South Asian (50), Black (43) and Chinese and other (34) populations were significantly higher compared to the White population (28). The effect of ethnicity is not completely accounted for by deprivation as ethnicity exerts a strong influence in the most affluent category, especially in the South Asian population.

Conclusions

In 2010 the prevalence of life-limiting conditions in children and young people in England was double the previously reported estimates and had increased annually in all areas over the last decade. This clearly identifies an escalating need for specialist paediatric palliative care services.