bluuebunny/crossref_metadata_2025_split huggingface dataset:
Bridging the gaps: a hospice's response to the needs of people living with advanced heart failure
Authors: Longton Katie , Laverty Diane , Richardson Heather 
Published: September 2011

Problem identifiedHeart failure (HF) affects millions of people worldwide in almost epidemic proportions with higher morbidity and mortality than many cancers presenting a major burden on individuals, families and healthcare resources. The unpredictable nature makes HF difficult to manage, to identify when referral to supportive and palliative care (PC) is appropriate, and when end of life is nearing. The national agenda is beginning to acknowledge the importance of addressing these issues. Healthcare professionals need to adapt their care, practice and services to reflect this. Work is required to address the common misconception that Hospices are only for people dying from cancer.SolutionA major grant from Help the Hospices and The Burdett Trust enabled an inner-city hospice to employ a Heart Failure Nurse Specialist to address the above issues. The work aims to:▶Improve awareness of benefits and appropriateness of supportive and PC within the HF community (patients and professionals)▶Establish a new model of care to suit clients needs and illness trajectory▶Establish joint working and shared learning opportunities between PC and HF professionals▶Development of a HF Wellbeing Clinic (HFWBC) opening access to the Hospice, introducing support and services earlier in patients' pathway.FindingsThe project already has significant findings:▶Patients with suspected HF are referred to the hospice with advanced symptoms prior to formal diagnosis or treatment optimisation as per NICE guidelines▶HF patients have embraced the HFWBC and other hospice services▶Communication and collaboration is improving between PC and HF professionals.Future plansThe project plans to:▶Re-audit referral patterns, numbers and patient outcomes for HF patients▶Conduct training needs analysis to formally highlight gaps in knowledge▶Develop a trigger tool and referral pathway into PC services▶Review of alternative models of care.
The breathing space clinic: a pilot to support the holistic needs of patients with advanced COPD
Authors: Hodson Matthew , Jennings Rebecca , Martin Jonathan 
Published: September 2011

The Breathing Space Clinic: a multi-disciplinary, inter-organisational hospice-based pilot clinic to support the holistic needs of patients with advanced chronic obstructive pulmonary disease (COPD).Introduction: In contrast to many other conditions, mortality trends indicate that the prevalence of COPD is increasing. Studies show that COPD patients' symptoms are at least as severe as those of patients with lung cancer and that this group is underserved by specialist palliative care.There are currently no reliable means of identifying when COPD patients enter their last year of life. Breathing Space combines the specialist expertise of both COPD-specific and palliative care teams to provide information, non-pharmacological and pharmacological interventions, advance care planning etc. The clinic thus aims to maximise quality of life for patients with very severe disease in response to need rather than prognosis.AimsThis presentation will outline the development and function of the Breathing Space Clinic, focusing on the rationale for our referral criteria and pathway.MethodsClinic development involved collaboration between the hospice, COPD patients, primary care teams and specialist respiratory teams across three London boroughs. It targets those patients with very severe COPD who have complex needs, including those arising from co-morbidities. Referral criteria are designed to reflect this approach and are grounded in an alternative model to that of palliative care provision for cancer patients. The referral pathway is designed to ensure NICE compliance. Relevant metrics are collected.ResultsOur presentation will include reflection upon early data from the pilot.DiscussionSignificant time and multi-disciplinary effort was required to develop the clinic concept to an operational level. Challenges were encountered in developing explicit referral criteria and these will be reviewed in light of the clinic metrics.ConclusionCollaborative interventions have potential to greatly improve patient care but require commitment and learning from all involved.
Breaking bad news to people with learning disabilities
Authors: Tuffrey-Wijne Irene , Giatras Nikoletta , Cresswell Amanda , Butler Gary 
Published: September 2011

IntroductionCurrent models for breaking bad news are inadequate in meeting the needs of people with learning disabilities (LD). People with LD are often not told of a life-limiting diagnosis. The task of breaking bad news is often left to carers who are poorly prepared and supported to cope with this.Aims▶To explore how people with LD understand and communicate about illness▶To explore the experiences and preferences of people with LD, families and professionals around breaking bad news▶To identify the factors that affect breaking bad news to people with LD.Methods96 participants took part in nine one-to-one interviews and 13 focus groups (including 3 on-line groups) across England. Participants included people with LD (21), family carers (37), LD professionals (26), general nurses including cancer and palliative care nurse specialists (13), doctors including GPs and palliative care consultants (8).Results▶People with LD have wide-ranging views about whether and how they want to be told bad news▶Both LD and healthcare professionals lack confidence in communicating bad news to people with LD▶Many family carers want to protect people with LD from bad news▶Bad news should be given in chunks, depending on the person's abilities and needs. All those around the person with LD can and should contribute to this. Most people with LD make sense of bad news within their social context, rather than in a doctor's office.DiscussionRather than ‘breaking bad news’, the key is to help someone understand and cope with a changing situation. This is a gradual process. A new model for breaking bad news to people with LD has been produced and will be presented as a poster.
Transdermal opioids: are we plastering over the cracks?
Authors: Whyte Graham , Coackley Alison , Powell Paula , Clare Littlewood , Steven Simpson , Thompson Anthony 
Published: September 2011

IntroductionTransdermal opioids such as Fentanyl and Buprenorphine are recognised as effective analgesics in the treatment of moderate to severe pain in patients with both malignant and non-malignant disease. However there is evidence to suggest that the knowledge of appropriate indications, pharmacokinetics, and dose equivalencies of transdermal opioids is poor, particularly among non-specialist prescribers. This is supported by drug safety alerts from the Medicines and Healthcare products Regulatory Agency highlighting reports of life threatening adverse effects and even death from unintentional overdoses.AimTo explore the prescribing patterns of transdermal opioids in palliative care patients in a UK Cancer Network.MethodsA prospective audit was conducted over a 6 month period at 3 different sites. This incorporated palliative care patients in hospice, hospital and community settings. Data was collected following the initial specialist palliative care assessment of patients already prescribed transdermal opioids at the time of referral. Information was recorded relating to the original prescriber, documentation of indications, evidence of toxicity and use of breakthrough medication.ResultsA total of 50 case notes were audited. Key findings revealed that indications for the use of transdermal opioids were only documented in 26% of patients. Over a quarter of patients had evidence of adverse effects, mainly opioid toxicity. The toxicity correlated with the strength of the transdermal opioid preparation rather than incorrect prescribing of breakthrough medication. However, results also showed that there appeared to be a lack of understanding as to appropriate doses of breakthrough medication.ConclusionThere are clear situations in which transdermal opioids can be effective and well tolerated alternative step 3 opioids. However these audit results would suggest that there is a need for more education and training particularly among non-specialist prescribers in order to ensure the safe prescribing and administration of transdermal opioids.
Learning from adult services: expert patients to expert parents
Authors: Twomey Christine , Busk Mary 
Published: September 2011

A project funded under DH £30 million for children's palliative care.IntroductionThe Expert Parents project was based on the adult expert patients programme to give self-confidence to adult patients to take responsibility for the management of their own long term condition while encouraging them to work collaboratively with health and social care professionals.Haven House Children's Hospice and Interface (a parent led forum in Redbridge) worked together in partnership to deliver 30 knowledge and skills training sessions in 3 months across Redbridge. The project aimed to help parents manage their child's condition effectively.AimsThe sessions aimed to empower, inform and educate parents/carers to become more expert in the care of their own children.The project aimed to raise the profile of disabled children and views them to be both a local and national priority.The project was aimed at all groups of children with disability and palliative care needs. The project aimed to provide knowledge, skills and information for parents about services so that they can make informed choices.Information was provided about care pathways and transition.The project aimed to build supportive relationships between parents and professionalsMethodParents and carers completed a standard questionnaire to evaluate each sessionResultsParent's valued learning with other parents, gaining support and experience diminished isolation. They had an increased awareness of the services available and started to develop a new network of contacts. There were 287 attendances by parents/carers overall.DiscussionIt was felt that the sessions allowed parents to open up and discuss issues, gave them hope for the future and made them feel positive. The project surpassed the expectations of the project team.ConclusionMany parents requested further training and highly rated the value of their sessions to become Expert parents.
Home based volunteers – bridging the gap between respite visits
Authors: Cook Amelia 
Published: September 2011

IntroductionThe project was conceived as a result of two observations. The hospice receives many applications from people keen to volunteer directly with children and young adults. Secondly the Care Team and Family Support Team observe that often simple practical matters can overwhelm families with a life limited child.AimsPractical and emotional support provided by volunteers could be a cost efficient means to offer ongoing support between hospice respite stays. The project both fulfills our vision that, “No child or young person with a life-shortening condition should journey alone or unsupported,” and considers the DH's end of life strategy championing the “Preferred Place of Care.”MethodsPatient and family demand for home based volunteers was ascertained using a survey and semi-structured interviews.Results31% of service users responded, of which 97% (60 families) welcomed volunteer support at home. Numerous needs were identified that could be met by volunteers.▶Practical services – gardening, laundry or cleaning – especially during difficult times such as hospital admissions or another illness in the family▶Befriending – supporting the family on outings, spending quality time with siblings or the patient▶Specialist services – legal advice, for example, arranging power of attorney or writing a will, hairdressing, massage.Recommendations for service developmentFindings indicate that a home volunteer co-ordinator is essential to match volunteers with families appropriately, liaise with other hospice teams and support volunteers. To ensure the safety of the scheme risk assessments, managing families expectations and an extensive volunteer training and support programme will be necessary.Project evaluation will involve eliciting feedback from volunteers, patients and families on the impact of home based volunteering. It is hoped that home volunteers will relieve the burden on families with a life limited young person reducing isolation, depression and anxiety and encouraging normalisation.
Part of the team? The experiences of support staff in British hospices
Authors: Turner Mary , Hemmings Rachel , Payne Sheila 
Published: September 2011

BackgroundBritish hospices employ a wide range of support staff to provide services to patients and families. Support workers make an enormous contribution to the success of the organisation in which they work; however, little previous research has focused on these staff. The aim of this study was to explore the perceptions of support staff in relation to their roles and relationships with other groups of hospice staff.MethodsSemi-structured interviews were conducted with 14 support workers from two hospices in the North West of England. Participants included gardening, maintenance, clerical, domestic and kitchen staff. Two managers were also interviewed to explore their views of support workers in the hospice. Site visits and non-participant observation were carried out in both hospices. A thematic analysis of the interview and observational data was conducted.ResultsSupport workers perceived their roles to be vital to the care offered to patients and families. They reported substantial interaction with patients and families, and put patients' needs first. They were willing to be flexible in carrying out their duties, recognising the need to show consideration to patients and families, who they believed valued their contribution. However, although support staff perceived themselves as an important part of the wider hospice team, they sometimes experienced isolation and division from other staff groups.ConclusionIn some cases support staff felt that they were invisible workers within the hospice. Despite the importance they and their managers placed on their roles, this was not always reflected in the acknowledgement and appreciation they received, nor in support and training offered to them. In order to fully utilise this group of staff, their roles and contribution to patient care need to be acknowledged by hospices.
The impact of the action learning set approach in nursing homes
Authors: Swani Tina 
Published: September 2011

IntroductionEffective leadership is necessary to meet end-of-life care needs in Nursing Homes. This requires appropriate training and support.An action learning set (ALS) was set up for this purpose, funded by the SHA, in partnership between a Hospice and University, facilitated jointly by Hospice CEO and University Senior Lecturer.The presentation sets out:▶Process▶Rationale for the ALS over competency-based approaches▶Resulting outcomes for staff, clients and families▶The significant impact of a simple framework▶Sustainability issues▶Insight into QIPP agenda and preferred place of care.Methods▶12 participants from 10 homes took part over 8 months▶Participants worked on real problems and met on equal terms as a peer coaching group for goal setting, planning and reflection▶Impact was evaluated by compiling changes and improvements.Results▶Linking professional and personal attitude to mortality▶More confident conversations about future planning▶Greater engagement of residents and families▶More consistent care planning – improved systems▶Improved bereavement support▶Night staff better equipped to support residents' wishes▶Residents and families better heard.Discussion▶As only eight homes were finally involved, successes and difficulties provide an incomplete picture.▶Good quality changes in practice have been sustainable due to culture, attitude and confidence being addressed.▶It has been difficult to sustain the ALS without ongoing facilitation. Attendance issues constantly challenge.▶Trust developed quickly in the ALS and proved an empowering factor.ConclusionThe ALS approach provides an empowering, safe environment for setting stretch goals and achieving sustainable change. Ongoing improvement may require a longer period of facilitated support. The partnership of Hospice and University proved effective for developing trust for issue sharing and exploration.
A toolkit to support ventilated children and young people in children's hospices
Authors: Cooke Alison , Harris Sam 
Published: September 2011

Children and young people who require Long Term Ventilation have heralded a new challenge for children's hospices across the UK. There has been growing recognition of the increasing numbers of those who are ventilator dependant and ongoing discussion about the appropriateness of their referral to children's hospice services. In addition there has been concern about the lack of consistency in caring for these children and young people and the need for further advice and guidance.A significant and growing number of young people with long term palliative conditions are now receiving Long Term Ventilation as part of their palliative care trajectory. Many of these young people are now surviving into adult life and are likely to transition into adult hospice care as their disease progresses.It is therefore likely that the issues, teaching pack, templates and information contained within the toolkit will also be highly relevant to adult hospice services.The Children's Hospices UK (CHUK) Ventilation Toolkit has been funded through money from the first round DH £30 Million for Children's Palliative Care. It has been created by a team of professionals from across the UK, led by Alison Cooke, Director of Care at Rainbows Hospice for Children and Young People in Leicestershire and David Widdas, Consultant Nurse for Children and Young People with Complex Health Needs in Coventry and Warwickshire.
Better together carers programme
Authors: Lawless Sandra , Townshend Briony 
Published: September 2011

Carers of palliative patients will often put their needs second to those for whom they are caring, but we know that their needs are great. Rapid changes in patients' condition and the emotional and relationship changes this brings are hard, requiring constant adaptation and emotional resilience.The ‘Better Together Carers Programme’ was developed in consultation with carers, as a structured weekly programme which aims to bring support and education to carers.Each 2 h session is facilitated by two qualified, experienced Palliative Care Social Workers, to promote a safe and stable environment for carers to build relationships with each other and the facilitators.The sessions offered:▶An informal ‘check in’ and ‘check out’ from all▶Guest speakers to give carers practical advice/signposting, and also tools to aid them in their caring role▶Simple complementary therapy massage and relaxation techniques▶Nutritional advice – for patient and carer▶Creative therapies▶Managing difficult and crisis situations▶Self care▶Social time with refreshments, allowing space to build relationships and peer support networks.The final session took the form of a candlelit supper for both carer and cared for person; this provided a positive ending to the course and also affirmed the value of the carer's role.Evaluation showed carers had gained greater confidence and skills in their caring role, had improved knowledge of resources available and had set up informal ‘buddy’ systems, which had improved their psychological well being. They valued the balance between information and emotionally charged discussion/sharing and social time/checking in and out, which gave opportunity and permission to be light hearted and sociable. For them it made a real difference in being able to cope and we feel this to be an important model to share.
Clinical and marketing teams working in partnership to improve access to services
Authors: Sutherland Jane , Frame Jane 
Published: September 2011

Improving access to palliative care has been high on the agenda for hospices for a number of years. Barriers to access are many and varied. Much work has been done to identify and reduce them but still evidence suggests that barriers remain.In 2008 our marketing team carried out a consultation exercise to gain a better understanding of the challenges the hospice faced in improving access for our locality. Over 400 local people, service users and providers were asked their views. A range of methods were used including key stakeholder focus groups and one-to-one interviews with the general public.Resultsdemonstrated significant barriers to accessing our services. Many were not aware of services on offer nor who could use them; and there was a real need for literature that clearly communicates the work of the hospice and the range of services it provides.The consultation exercise resulted in a rebranding in 2009. Since then our marketing and clinical teams have worked in partnership to raise the profile of the hospice and reduce barriers to access through a range of promotional and marketing initiatives. We have produced a range of service information leaflets and clinical literature and have successfully developed networks and collaborative working relationships with colleagues in non-cancer specialities.Some 3 years on we are beginning to see the results of our partnership working. We have achieved more by combining our marketing and clinical expertise than we could have achieved singularly. Statistics suggest that we are beginning to improve access to people not previously accessing our services well. While there is still a long way to go we can see that our joint working and enhanced information giving is raising the profile of our hospice and the services it provides, paving the way for more patients to access them.
Extending services and enhancing systems: working together to manage increased numbers of referrals
Authors: Sutherland Jane , Midgley Corinna 
Published: September 2011

Improving access to palliative care for all patients with life limiting illness has resulted in a significant increase in referrals to specialist palliative care services. Expanding services to keep pace with increasing demand and ensure that all referred patients have access to specialist advice and clinical assessment in a rapid and timely manner has posed a challenge and placed greater emphasis on the importance of prioritising referrals according to need.Extending services to cope with growing numbers of referrals has required innovative thinking and enhanced systems. Our service has seen a 24% increase in referrals over the last 3 years. As referrals have risen in number it has become increasingly necessary to look at referrals management and review our processing of them. Our key aim being to ensure that referrals are prioritised according to need and dealt with as quickly as possible.We reviewed our management of referrals in a number of stages using a variety of methods including process mapping, audit and focus group work. Methods were chosen based on the size, needs and processes within each department. The review exposed a number of gaps, bottlenecks and inequities.Finding solutions to our bottlenecks and to better manage referrals has been well supported by our use a standardised holistic assessment tool across the organisation. We use an organisationally adapted version of the Support Team Assessment Schedule -STAS (Higginson, 1989) to structure our assessment of patients against 30 factors across all required domains.We are now working creatively to expand our use of the tool to prioritise referrals and manage departmental waiting lists. Evaluation has shown that using STAS within clinical departments has enabled us to enhance our method of processing and prioritising referrals according to need and ensure that we are better placed to meet demand.