bluuebunny/crossref_metadata_2025 huggingface dataset:
P157 A palliative care intervention for patients with advanced non-malignant respiratory illness
Authors: Mackay Marjory , Christie Janice , Moodie Alison , Lynch Deborah
Published: October 2013

Introduction

Patients with advanced respiratory disease do not routinely access palliative care services and given that many are unable to attend hospital appointments, they are even less likely to receive quality palliative care support in their last year of life. This collaborative project between an NHS Respiratory Team and a Hospice aimed to address this inequity.

Aims

The specific project aims were to: improve symptom control; raise patient and carer awareness /understanding of illness and prognosis; explore patients’ wishes about future treatment and care and establish an advance care plan (ACP); communicate patients’ wishes across health care settings; reduce inappropriate hospital admissions and inappropriate treatments.

Methods

Using a convenience sample over a 12 month period, all patients who met inclusion criteria (adapted from Gold Standard Framework prognostic indicator guidance) were referred by the respiratory team to specialist palliative care (n = 49). The planned intervention comprised three visits to the patient’s home by a palliative care nurse specialist.

Data collection aimed to evaluate the outcome of visits; the follow-through of ACP wishes during hospital admissions; patient experience; GP feedback; impact of project on specialist respiratory nurses and patterns of hospital admissions.

Quantitative data was analysed using descriptive statistics and Qualitative data was collated into themes.

A favourable ethical opinion was granted for the project.

Results

Results to date suggest that 1) selection criteria were effective, 2) the intervention had a positive effect on patients’ wellbeing and engagement with the ACP process, 3) purposeful communication and treatment across healthcare settings were enhanced. Some challenges are also emerging, all of which will help shape future service provision. It is anticipated that this collaborative model of service is transferrable to other non-malignant specialties and could be adapted by other hospices /palliative care servcies. Final results are due to complete by June 2013.

The project was part funded by the Burdett Trust for Nursing.
018 One Step Beyond: Working in partnership with CCGs to extend access to Bereavement Services
Authors: Patel June , Helm Sarah Popplestone , Westwood Debbie
Published: October 2013

Aims

The service aims to - Provide access to bereavement support for all bereaved people irrespective of age, culture disability and gender - Assess bereavement need and signpost people pre and post bereavement to bereavement services within their locality - Extend access to advice 24/7 supported by the development of a bespoke bereavement websitewww.bereavementsupportworcestershire.org.uktelephone help-line service, Counselling and Social Work support - Raise professional awareness about grief by providing bespoke education and training - Raise awareness of the bereavement process and coping strategies of bereaved individuals and families by education and group support. Approach A formal tendering process resulted in securing a three year NHS contract. A multi-agency project group was formed, including a service user, to develop the operational service model in accordance with the NHS service specification. Outcomes - Widening access of bereavement support to adults and children experiencing sudden death from suicide, RTAs’ and unexpected deaths - Multi-agency engagement in shaping operational model - Rapid access to social work and counselling social for the bereaved following self-referral and referrals from Primary Care - Positive evaluations from services users and GPs’ - Service user involvement in the formal media launch with South Worcestershire CCG - 193 professionals have attended education programme and positively evaluated - 7401 hits to access information on bereavement website.
P158 A hospice motor neurone disease clinic: challenges and benefits of a new service
Authors: Bywater Jane , Butt Jo , Mathias Caroline , Smith Jean , Gaffney Rachel
Published: October 2013

Background/context

The Hospice in North Hampshire had offered support and care to MND patients but in an unstructured way. Close working between the Palliative Medicine and Neurology Consultants led to a recognition that both early and advanced care could be improved if services were to work more closely together.

Aim

The aim was to set up and run a montly multi-disciplinary clinic for people with MND in the Hospice, allowing access to all members of the multi-disciplinary team (neurologist, consultant in palliative medicine, care centre co-ordinator, hospice at home team, social worker, physiotherapist, OT, speech and language therapist, Association Visitors) via one clinic. The clinic link with the MNDA would improve access to information about services. The outpatient hospice setting allows informal support for pts and carers from Assoc Visitors.

Outcomes

To improve the patient and carer experience.

To ensure access to hospice services early in diagnosis.

To improve both peer and carer support through joint working with the MNDA.

To develop a specialist skill base with opportunities for support and training of other professionals.

To develop patient professional relationships which allow easy transition in the end stages of illness.

Application to hospice practice

Many centres across the country run a multidisciplinary MND clinic but traditionally in the hospital settling. Evidence is good for improvement in patient care from a hospital model of service delivery model. Hospices have many advantages with their experience in coordinating care and community focus. The early links with the Hospice allow continuity of care throughout the patient journey.
P159 Changing a Lymphoedema Service through Service Redesign
Authors: Murphy Debbie
Published: October 2013

Background

Well established Lymphoedema service facing number of escalating issues:

Increasing referrals

Over budget

Frustrated staff

Lack of care pathways and long term management

Lack of innovation

Aim

Reduce financial strain

Provide clear care management strategy

Introduce self-management strategies

Ensure full access for individuals with Lymphoedema.

Approach Used

Poor team work - looked at strengths and the weaknesses of each team member as a team

Cost reduction – compression garment formulary assessed on cost effectiveness, size of range, availability on FP10, education supplied by the company.

Care pathways – patient journey plotted dependent on severity of condition.

Discharge policy developed, packs sent to the GP and to patient.

Long term self-management - six week education programme combined with fun exercise class (Le Bed), gives patients tools to manage own condition.

Following discharge from Le Bed, Lymphoedema Information Fun Event (LIFE) established after feedback from patients - provides ongoing information about service development. Group used as patient reference and involvement group e.g. feedback on leaflets etc.

Investment in new technologies (lymph assist machines, lasers, oscillator) - enhances treatments offered, produces quicker results.

Kinesio tape introduced

Children’s Lymphoedema Service initiated

Bra fitting service developed.

Outcomes

Greater sense of team - clear lines of reporting, goal setting and monitoring.

Expansion of team with a clear mix of skills

support worker undertaking more routine work, specialist nurses concentrate on more complex cases

part time specialist appointed

Lymphoedema physiotherapist (still to be appointed)

training and development - manual lymphatic drainage, Le Bed instructor training, bra fitting, wound management, child protection training etc.

Number of new patient referrals has increased year on year (see table)

Negotiated and secured contracts with three additional CCG’s

2008/2009 = £23k overspend, 2011/2012 break even (including reinvestment in new technologies and education)

Number of intensive treatments increased from 27 in 2010/2011 to 119 in 2012/2013

Patients self-managing - the discharge pathway and Le Bed class – leading to greater self esteem

Lymphoedema manager recognised as Lymphodema nurse of the Year 2013, British Journal of Nursing
P160 Think again! Treatment changes for patients with head, neck and facial swelling
Authors: Norris Julie
Published: October 2013

Background

Few patients referred for head, neck and facial lymphoedema as widely viewed that very little could be done, apart from prescribing tight fitting compression garments which are very constrictive and have a low patient compliance.

Aim

Improve access for patients experiencing lymphoedema to the head, neck and face.

Identify alternative treatment methods

Develop closer working relationships with the Speech and Language, Dietician and Head and Neck services.

Approach Used

Four cornerstones of care used:-

Skin care: application of regular skin cream to hydrate skin, prevent infection and encourage self-management

Manual Lymphatic Drainage (MLD): specialised gentle massage to aid and stimulate drainage.

Simple Lymphatic Drainage; patient learns to move the build-up of fluid

Exercises (facial):- Encourages muscle movement, aids movement of lymphatic fluid. Breathing exercises stimulate deeper lymphatic vessels in chest and abdomen to enhance lymph drainage.

Compression worn to maintain shape, reduce swelling.

New treatment modalities (accompanied by modified MLD):

Low level laser therapy: infra-red wavelength penetrates deep into tissues, aids softening of fibrosis and scar tissue, useful in treating cording.

Deep oscillation therapy: - penetrates deep into body tissue triggering lasting resonance

Kinesio Tape: increases body’s ability to drain lymphatic drainage to healthy lymph nodes

These innovative treatments have proved to be an effective adjunct to our existing specialist knowledge and enhanced treatments offered to patients

Measurements pre and post treatment compared using photographs

Patients complete questionnaire after each session, record any immediate changes to symptoms.

Outcomes

Increased referrals for treatment to head, neck and face

2011/2012 - 5 referrals

2012/2013 – 17 referrals

Development of a closer working relationship with the surgical head and neck multidisciplinary team at hospital.

Patient comments

I don’t feel that everyone is looking at my face as they did before, I felt like I was the elephant man, much happier and I went for a walk with the wife, I wouldn’t have done that a few weeks ago.

I was able to eat normal food after treatment for that day
P161 Meaning of pain for patients with advanced cancer and how it influences behaviour: A qualitative research study
Authors: Jennings Rebecca
Published: October 2013

Background

Health related quality of life incorporates physical function and independence which are high priorities for patients with advanced cancer. These two inter-related domains can be compromised through the experience of cancer-related pain. Patient-held meanings of cancer pain may have potential to influence behaviours which determine functionality and quality of life.

Study aim

To explore the meanings of pain among patients living with advanced cancer and to understand how these influence functional behaviours, with the aim of developing clinical recommendations to inform patient care.

Design

Participants underwent in-depth, semi-structured, qualitative interviews. Data was analysed using Interpretative Phenomenological Analysis to identify emergent themes.

Setting/Participants:

Ten patients with advanced stage cancer experiencing cancer–related pain were recruited from an Inner-London hospice palliative care service.

Results

Meaning of pain in advanced cancer is inextricably linked with loss and bereavement. Meaning of pain is a dynamic, temporal process underpinned by the following themes: (i) nature of cancer-related pain, (ii) multidimensional impact of pain on patients’ function and behaviour, (iii) ‘Web of Loss’: a complex network of losses that perpetuates cycles of further loss and (iv) hope and appreciation of life. The data suggests meaning of pain has an indirect influence on behaviour mediated by the coping strategies patients adopt. Meaning of pain has potential to promote both constructive and maladaptive responses in functional behaviour.

Conclusions

Findings further our understanding of the experience of cancer-related pain and inform bio-behavioural approaches to pain management in palliative care. Recommendations include (i) tailoring pain management to dedicate greater attention to the behavioural dimension of cancer-related pain (ii) timely identification and management of preparatory grief in patients with advanced cancer and (iii) promotion of constructive coping strategies to support patients to make sense of their pain and maintain functionality within the limitations of advancing disease.
P162 Lost in translation; Physiotherapists’ attitudes and beliefs towards palliative cancer patients in the acute hospital setting
Authors: Hutchinson Helen
Published: October 2013

Aim

The study aimed to elucidate any attitudes acute hospital physiotherapists may have towards palliative cancer patients.

Background

With advances in medical technology, increasing numbers of patients are ‘living with’ a terminal cancer diagnosis for longer periods; this coupled with changes in government policy, is resulting in patients being treated closer to home rather than in specialist centres, bringing physiotherapists into increasing contact with this patient group.

Methods

Semi-structured interviews (analysed utilising Colaizzi’s method of analysis), of the first twelve physiotherapists from an acute hospital in the UK who volunteered for the study and who met the inclusion criteria.

Results

Two clusters of themes were identified, namely Attitudes and Issues. There were four sub-divisions of Attitudes; terminology, physiotherapists’ perceptions, other professionals’ perceived attitudes towards physiotherapists, and patients and their families perceived attitudes towards physiotherapists’ role with terminally ill cancer patients.

“I’d say there are a lot of physio’s that think it’s probably a little bit pointless”

“try and maintain their quality of life … by their thinking… and hopefully try and meet it.”

There were six sub-divisions of issues: communication, education, emotions, boundaries, referring onward and time.

“I think they’re [physiotherapists] scared that that’s going to be asked of you…will I walk again?”

Conclusions

Some physiotherapists understand and apply their skills to improve the quality of life of palliative cancer patients. However it is suggested that the majority of physiotherapists regard these patients as ‘dying from’ rather than ‘living with’ a terminal cancer diagnosis. Referral protocols and service pathways are lacking. Physiotherapists require support and education to enhance particular skills and confidence.

Application to hospice practice

Hospices have the opportunity to establish rehabilitation teams and pathways with acute hospitals to improve access to rehabilitation for all palliative cancer patients and to deliver services in line with government policy.
P163 Move it or Lose it! developing supportive care: the evaluation of an exercise programme for patients with MS
Authors: Archer Nikki , Robinson Julie , Waite Jenny , Rowbotham Denise
Published: October 2013

Studies have suggested that engagement in a programme of exercise is beneficial for people living with Multiple Scelrosis (MS). There is evidence of improvements in mobility, overall health and the management of some symptoms such as fatigue, muscle stiffness, anxiety and depression.

St Giles Hospice has been working to develop it’s provision of Supportive Care, working with community partners to meet the needs of those affected by a life limiting illness who have previously not easily accessed hospice services.

A 12 week pilot exercise and support programme was undertaken working in collaboration with a community based exercise facilitator, and local NHS MS services.

The aims:

promote and maintain independence

improve muscle strength, flexibility, mobility and activity

provide a supportive environment

introduce patients to hospice support

The exercise class was set to music, using a range of equipment, most participants began from a seated position, with encouragement to stand if appropriate, there was focus on improving strength, stamina, mobility, co-ordination, balance, flexibility and confidence

The outcomes

9 people attended, aged between 43 and 77

Overall attendance = 75%, 83 out of 111 possible attendances

Evaluation: participants recorded sit to stand from their chair as a measure of leg strength at the beginning and end of the course.

The results showedsignificant improvement in all participants demonstrating a tangible increase in leg strength and technique. Being able to quantify their own progress boosted self-esteem, Participants reported significant social and supportive benefits to attending.

The hospice has engaged in dialogue with commissioners to support this work. We have engaged with other MS patients, their carers and NHS staff to promote the benefits of the programme. We have engaged in dialogue with the patients who have attended and work with them to provide a maintenance programme.
P164 Evaluation of advocacy service at St Joseph’s hospice, Hackney
Authors: Roebuck Hattie , Millar Susan
Published: October 2013

Evaluation of advocacy service at St Joseph’s Hospice, Hackney.

Background

It is estimated that 1.7 million (22%) of London residents do not speak English as their main language. In boroughs such as Newham this figure rises up to 41% of residents. (2011 Census). Newham University hospital has an extensive healthcare advocacy service to meet local need and it also provides advocates to interpret consultations at St Joseph’s Hospice.

Aim

This project aimed to assess the impact of working at St Joseph’s Hospice upon healthcare advocates.

Method

12 healthcare advocates were interviewed individually at St Joseph’s hospice using a questionnaire. Their experience of hospice work was assessed. Their opinion was sought on whether they found working in a hospice different to the hospital setting, the emotional burden, the structure of the consultations, and episodes of culturally insensitivity. They were also asked if they would like additional training or support to undertake hospice work.

Results

The advocates enjoyed hospice work but most (11/12) found it emotionally challenging. They felt unclear about how to balance professionalism and emotion whilst breaking bad news and often worried about the patient and their family later in the day. They were keen to promote continuity with the same advocate interpreting for a patient or family and to be considered part of the healthcare team. They had no formal system for emotional support and a majority requested this (11/12) plus additional training (9/12).

The advocates also reported that greater structure to the consultation process would be helpful. 7/12 felt they had observed inadvertent cultural insensitivity.

Outcomes

We are liaising with the advocacy team about communication skills & emotional resilience training. Guidelines for undertaking consultations with advocates have been written. The impact of these upon advocate consultations and patient care will need to be evaluated in due course.
P165 Engaging minority ethnic communities: an evaluation of a Marie Curie Hospice project aiming to improve access to palliative care services
Authors: Baillie Jessica , Harrop Emily , Byrne Anthony , Stephens Karen , Nelson Annmarie
Published: October 2013

Background

There is increasing emphasis on ensuring that access to healthcare is equitable in the UK, yet on-going evidence demonstrates that minority ethnic communities are underrepresented in accessing palliative care. A Marie Curie Hospice in Wales initiated a funded outreach project with a keyworker post to engage minority ethnic communities, aiming to improve access to palliative care services.

Methods

The study aim is to evaluate the outreach project and keyworker post. A longitudinal evaluation of the initiative is being undertaken, encompassing interviews with hospice and community healthcare professionals, minority ethnic communities and the project keyworker. Key project documents, such as reports, and hospice ethnicity data are also being analysed. This presentation reports on data from semi-structured interviews with hospice staff and keyworker, and analysis of project reports. Relevant ethical and governance approvals were obtained.

Results

Hospice healthcare professionals highlighted challenges when providing palliative care to individuals from minority ethnic communities, particularly language barriers. Minority ethnic communities in South Wales appeared uninformed about local palliative care services and the keyworker implemented a range of initiatives to raise awareness and widen hospice referral routes. Additionally, the keyworker supported healthcare professionals when caring for people from minority ethnic communities, for example meeting religious needs at the end-of-life.

Looking ahead, hospice staff are keen to increase their understanding of different ethnic groups and cultures, while the keyworker hopes to work with community healthcare teams to improve referral rates to the hospice.

Conclusions and application

The evaluation has demonstrated the progress made by the keyworker to engage minority ethnic communities and support hospice staff to holistically care for people from different ethnic groups.

The keyworker role appears, at this early stage in the project, to be an excellent way of engaging minority ethnic communities and improving access to palliative care services.
P166 When English isn’t your first language: supporting deaf people in end of life care
Authors: Hodson Melanie , Ede Jill , Dean Rowena , Edwards Rebecca
Published: October 2013

Identified as a significant public health issue, hearing loss affects more than 10 million people in the UK. This figure is expected to rise to 14.5 million by 2031 [1] and the WHO anticipates that adult onset hearing loss will be amongst the top ten health problems*in the UK by 2030 [2]. Approximately 50,000 people use British Sign Language (BSL) as their first or preferred language [3].

It is thought that of those dying each year in England and Wales, more than 70,000 will be deaf or hard of hearing and it is reported that there is ‘little deaf awareness within the world of palliative care’ [4].

Low deaf awareness amongst health staff and insufficient communication support means that people with hearing loss can find health services difficult and frustrating to use and family members may be inappropriately used as interpreters.

Access to end of life care can be impeded by communication difficulties and low health literacy. Research suggests that people who are deaf may have limited understanding of their choices for end of life care [5]. Pain and symptom management can be key issues [6] and a literature review indicates that there is little information available in BSL to help people find out about hospice care.

We discuss barriers to communication, impacts of a lack of deaf awareness, outline ways in which hospice care professionals can support people who are deaf and present a new BSL hospice care information resource.
P167 An exploration of end of life care needs of people with intellectual disabilities: Developing a model of service delivery
Authors: Cithambaram Kumaresan , Duffy Mel , Courtney Eileen
Published: October 2013

Background

People with intellectual disabilities are living longer and suffering from the same life limiting illness as general population. The changing needs and care demands of this group force service providers and professionals to better equip themselves to respond and attend to the specific health needs of this group. In the caring process service providers often forget to hear, listen to and include the voices of this vulnerable population which can lead to people with intellectual disabilities receiving inconsistent and inappropriate end-of-life care.

Aim

To explore the end-of-life care needs of people with intellectual disabilities and develop a model of service delivery.

Objectives

1. To explore attitudes, perceptions and preferences of people with intellectual disabilities about end-of-life care. 2. To explore perceptions and experiences of family members of people with intellectual disabilities about end-of-life care needs of people with intellectual disabilities. 3. To develop a model of service delivery for people with intellectual disabilities at the end of life.

Methodology

The study was conducted in an intellectual disability service that provide residential and community service to adult with intellectual disabilities. Constructivist version of Grounded Theory Methodology was adopted. Ethical permission was obtained from the academic institution and service to carry out the study. All consenting participants (17) were interviewed between 45-60 minutes. Data were analysed using Constant comparative method.

Findings

The data revealed how the participants wanted to be cared at the time of dying and after death. The participants’ main concerns are revealed from the data areHolismandFamiliarismwhich explain the care needs at the time of dying andRespectivismwhich explains the care requirement after death. A core category of Continum and Ultimatumwas constructed.

Conclusion and Implication

The findings from this study will help to develop a model of service to meet the needs of people with intellectual disabilities at the end of life.
019 Recognising Dysphagia Risk and Compromised Nutrition in Patients with Advanced Chronic Obstructive Pulmonary Disease (COPD): Exploring the Role of Speech and Language Therapy and Dietetics
Authors: Harvey Sarah , Gordon Lianne
Published: October 2013

Background

Patients with advanced COPD have an increased risk of dysphagia1and malnutrition2. These symptoms are frequently inter-related and can have a detrimental impact on patients’ nutritional wellbeing, frequency of exacerbations and quality of life. Speech and Language Therapists (SLT) and Dietitians possess expertise in the diagnosis and management of dysphagia and malnutrition however their role supporting palliative patients with advanced COPD is not well established.

Aim

To explore the role of SLT and Dietitian in the screening, diagnosis and management of dysphagia and malnutrition in patients with advanced COPD.

To raise awareness of swallowing and nutrition difficulties in advanced COPD amongst patients, carers and palliative care professionals.

Approach Used

All hospice patients with a diagnosis of advanced COPD were screened for dysphagia and malnutrition by the SLT and Dietitian over a one month period. Anecdotal qualitative information was gathered on the impact of COPD on aspects of everyday life relating to feeding including shopping, food preparation, fatigue, appetite, ability to eat a meal.

Outcomes

The majority of hospice patients with advanced COPD presented with a degree of oropharyngeal dysphagia and malnutrition (weight loss and fatigue). Patients were unaware that eating and drinking was affected by COPD, believing that swallowing difficulties and loss of appetite were things they would ‘have to put up with’. Patients were unaware that help was available and had no understanding of the role of SLT and Dietitian in supporting their symptom management.

Application to hospice practice

SLT and Dietitian appear to have important roles in raising awareness and supporting best management of dysphagia and malnutrition in patients with advanced COPD, to optimise their feeding and nutritional wellbeing.

Hospices caring for patients with advanced COPD should proactively screen for dysphagia and malnutrition to ensure these symptoms are recognised and appropriately managed.
P168 Learning disabilities and palliative care: Building bridges – supporting care
Authors: Smith Liz , O’Donnell Allison
Published: October 2013

Palliative care for people with learning disabilities (PWLD) is often complex but it is vital that these challenges are faced. It is also important to recognise that life limiting illness is more prevalent in the learning disability population and that PWLD die on average 25 years younger than the general population1-2. Increasing numbers of PWLD are living at both ends of the age spectrum with co- morbid conditions and complex health needs and there is a growing need for palliative care provision.­

This project recognises the need for education and the development of robust partnerships which lead to collaborative working, to ensure that PWLD will experience equity in accessing palliative care services.

The aim of the project, funded through Help the Hospices and the Scottish Government, is to bring the two specialities of Palliative Care and Learning Disabilities with Greater Glasgow & Clyde together using a practice development approach. This will provide support to staff in the provision of best quality care for people with Learning Disabilities who have palliative care needs.

Links have been made at both local and strategic levels within both learning disability and specialist palliative care services. All 9 learning disability teams and 6 hospices within NHS GG&C have access to this project.

Strategically the project sits within the current learning disability strategy and although all 6 hospices are independent in their delivery of care, Chief Executives have demonstrated their commitment to the project.

All education events are evaluated and the evaluations have been extremely positive, with staff suggesting that the education provided will have a direct impact on their professional development and provision of best quality patient care for PWLD.

PWLD are at the heart of this project with the ultimate aim being to improve their care.
P169 Reaching more people at the end of life through digital communication
Authors: McLaughlin Kimberley , Miller Daniel
Published: October 2013

End of Life care is arguably both a public health and diagnosis specific concern. Those living and dying from life threatening illness access support and care from formal (e.g. health and social care) and informal (e.g. community, friends and family) networks. The last few years has seen an explosion in social media and new communication technologies in the informal arena. As hospices face the challenge of extending their reach and realigning their existing resources, researching new ways to support patients and their families is key.

A 3 year collaborative study between Professor Daniel Miller (Department of Anthropology, University College London) and Kimberley McLaughlin, Director of Supportive Care (Hospice of St Francis) focuses on the hospice, patients and those living in the community.

Aims

To understand the impact and future potential of new communication technologies e.g.webcam, social networking sites and smart phones.

To gain the widest and deepest understanding of the role of these technologies in all aspects of communication between people in end of life situations, their carers, family and friends.

To research issues including privacy, feelings of security and vulnerability, loneliness, boredom, memorialisation and sense of connexion with others.

To explore the relationship between any sense of loss of communicative capacity for persons and simultaneously a gain in communicative capacity as a result of new technologies.

To understand the use of communication technologies and health care professionals/hospice staff.

This research will

Advance the body of knowledge regarding the use of social media in end of life care as well as researching in sensitive areas.

Provide guidance in the use of social media in end of life care.

Facilitate communication between end of life individuals who remain in their home and with carers, friends and families both during this period and following upon their death.
P170 Digital life, digital death – an App to fill the gap
Authors: Taylor Ros , Moore Victoria , McLaughlin Kimberley , Russell Sarah
Published: October 2013

Context

The crisis of illness provokes people to review their life, dwell on regrets and unfinished business, think about bucket lists and maybe their funeral.

This critical time however is dominated by treatment, panic and anxiety, and these important tasks are often neglected and delayed.

Lawyer, Victoria Moore and business partner Morag Cormack have designed a simple, elegant iPhone App to digitally capture life’s special moments, in the midst of life, long before an illness takes hold.

Victoria was inspired to create theLegacy OrganiserApp after completing her will – she felt there was so much more to record than simply ‘who gets what’!

The Legacy Organiser App allows you to:

Save photos for your ‘life album’

Choose music to create the ‘soundtrack of your life’

Create a ‘bucket list’

Record your life lessons, your biggest regret, your best kiss!

The ‘farewell and will’ section lets you record funeral wishes

Palliative Potential

This innovative app provides opportunities for those in the palliative phase to:

Use as a therapeutic digital tool to provoke new conversations

‘Tell me about that regret’, ‘talk me through your bucket list’

‘Have you thought about how you might celebrate your life?’

Use as an advance care planning platform to capture wishes, not simply about funerals but about preferences for future care.

Create a generativity document (Chochinov Dignity Therapy)

Carry choices around with them - mobile phones allow instant access and sharing of key preferences with others

Next steps

Therapeutic pilot with 10 patients

download App to patients iPhone

demonstrate potential

homework to complete a section eg bucket list

review together at next clinic.

First impressions– patients love it, provoking different conversations!

Evaluation questionnaire currently in design.

Co-create new sections to support advance care planning eg care preferences, with App inventor Victoria Moore
02 Volunteering in Partnership (VIP): Promoting compassion
Authors: Wilson Gail , Pyman Kate , Knowles Sandy
Published: October 2013

This DOH funded project aimed to increase the volunteering capacity and the personalisation agenda in 3 organisations which support those with long term conditions, the frail elderly and individuals who are at the end of life.

The project sought to create new volunteering opportunities for young people aged 16-18 by challenging the paternalistic and risk adverse attitudes of care providers who were reluctant to let young people volunteer with patients.

Project management methodology was used to deliver the project. The organisations held meetings with current staff/volunteers and literature was provided to explain the nature of the project and to answer any questions.

All VIPs received comprehensive training which promoted the values of compassion, dignity, communication skills and care supporting tasks, eg assisting people at mealtimes.

This first stage of the VIP project has been highly successful and has introduced young volunteers into areas that have not previously been available to them. The key outcome is that, with the right support and training, young people can make a very positive contribution to the personalisation agenda of caring and support. The feedback from staff, patients and the young people themselves has been very positive and they appreciate the employability benefits of being part of the VIP scheme.

The project has benefited the hospice in a number of ways, saving money and time eg escorting patients to health appointments etc. However, the wider gains have been the proactive engagement of the hospice in the local community, working with schools and colleges, supporting young people to gain employability skills. By creating volunteering opportunities for young people in these areas, stereotypical attitudes and perceptions can be changed as young people become more informed about how to support personalised, compassionate care for the elderly and dying.
020 “Do patients with end-stage chronic obstructive pulmonary disease (COPD) on maximal pharmacological therapy with specialist respiratory care benefit from Pharmacy Technician led medication review?”
Authors: Wall-Hayes Lisa , Seager Louise , Bartlett Joanne
Published: October 2013

Introduction

John Taylor Hospice runs a 9 weekFatigue,Anxiety &Breathlessness (F. A. B.) programme for patients with end-stage COPD. All patients recruited to the programme were on maximal pharmacological therapy1with regular input from both community and hospital specialist respiratory teams.

Aim and Objectives

To ascertain if Pharmacy Technician led medication reviews would be a valuable addition to the programme.

Method

Of the 11 patients recruited to the programme 6 were randomly selected for a domiciliary medication review by the Pharmacy Technician. Issues identified by the review were dealt with either at time of review or if necessary escalated to the appropriate professional for follow up. Interventions were categorised and recorded. Evaluation forms were completed by those receiving a review and a questionnaire was completed by those who had not.

Results

6 medication reviews were completed, 4 of which were in a domiciliary setting, whilst 2 took place at the hospice.

30 interventions were identified of which 13 were dealt with at the time of review, the remaining 17 were escalated.

Main categories of intervention were: Adherence/counselling and prescription issues.

Patient evaluation results: 100% of patients stated that the medication review was helpful, 100% also stated they now felt more confident managing their medication.

Patient feedback questionnaire results: 100% of patients who did not receive a medication review stated they would have found it useful.

Drug cost savings demonstrated: approximately £5602over 6 months.

Conclusion

Patients with end-stage COPD on maximal pharmacological therapy with regular respiratory team involvement, still benefit from a Pharmacy Technician led medication review.
021 Advance care planning - development of a group intervention for people with newly diagnosed dementia and their families
Authors: Madsen Emily , Grey Lorna , Horne Gillian
Published: October 2013

Background

Rowcroft Hospice’s strategic aim is ‘taking care further’. This includes providing greater access to services and end of life care for people with non-cancer diagnoses. Working with Devon Partnership NHS Trust an intervention was developed to offer people post diagnosis with dementia, and their families/carers in South Devon. The ‘Planning Ahead’ session is delivered as part of a ‘Memory Matters’ course.

Aim

4 weekly 2 hour sessions for those recently diagnosed with dementia and carers.

Informal introduction to advance care planning - focus on changing ability to communicate and make decisions in the future.

Provision of information about the legal framework and support tools.

Promote choice – place of care, preferences, hopes and wishes, nature of medical intervention etc.

Provide a supportive and safe group to explore these issues.

Approach

An informal psycho-education group. The use of group discussion enables individuals to talk about personal experiences/concerns. This facilitates the sharing of information and literature specific to planning ahead. We used mixed media including: video clips, hand-outs, power point, local and national booklets.

Outcomes

Initial evaluation by participants:

Improved understanding about decision making in the event of changes in communication/capacity.

These conversations are difficult to have/or start in families without support.

Peer support/normalising effect of the group has been helpful.

Observations of facilitator:

Shared opportunity to start difficult conversations.

Carers empowered to consider their own preferences and wishes – the universal relevance of planning ahead for all.

Individuals with dementia who attend need support to participate and encouragement to be involved.

Carers/family members can dominate.

Application

Advance Care Planning is a cornerstone of Specialist Palliative Care. Developing bespoke ways to meet the varying needs of different patient groups and their families is essential.
022 Hospice-based multi-disciplinary clinic for end-stage renal failure improves quality of care and reduces hospital admission
Authors: Wilderspin Nicola , Turner Marian , Ferring Martin , Garside Jenny , Blaine Felix , Westwood Debbie
Published: October 2013

Background/context

Patients opting for conservative management of end-stage renal failure in South Worcestershire frequently died in hospital and struggled to attend acute hospital outpatient appointments.

Aims

To improve quality of life through a new hospice-based model of care for conservative management of end-stage renal failure, and provide opportunities for advanced care planning and increased choice in end of life care.

Approach

Patients and carers attend a flexible afternoon day hospice ‘clinic’ which begins with lunch and offers assessments with:

An acute hospital nephrologist to proactively manage renal complications such as anaemia and fluid balance.

A palliative care CNS/consultant for symptom control, carer assessment and advanced care planning.

Complementary therapies and informal chaplaincy support are also provided. Details of advance care plans are communicated to primary and secondary care, and inclusion on GP end of life care registers recommended.

Evaluation included satisfaction surveys of patient/carers and monitoring planning for,and place of, end of life care. Excellent satisfaction scores were reported with very positive qualitative feedback. 69 patients were referred between 2010-13, with median age 83 (range 49-97 years) and high co-morbidity scores. Carer assessments enabled significant unmet supportive care needs to be addressed. Referrals to other community-based services were arranged as needed. Of the 52 patients who have died (75%), the majority (46, 88.5%) have died in community settings, with only 6 (11.5%) dying in hospital. Collaboration with renal services also facilitated transfer/community referral of other hospital patients dying with renal failure who would not previously have been identified for hospice care.

Application

Increased quality of care and cost savings (from unscheduled care) have enabled on-going clinical commissioning group (CCG) funding. This accessible multi-disciplinary clinic may offer a new model of end of life care for the frail elderly, leading to CCG funding to pilot multi-disciplinary clinics for patients with other chronic diseases in partnership with the acute hospital trust.
P1 Improving End of Life Care (EoLC) in care homes: An action learning and education development programme for care home leaders
Authors: Booth Michele , Nash Sue
Published: October 2013

In the last decade there has been considerable investment in end of life teaching to the care home sector with particular reference to the Gold Standards Framework and Six Steps to Success North West Care Home Programme. These two successful programmes are continuing to gather momentum and our project was not to compete with these, our dual aim was to develop care home managers in terms of their leadership and management and increase theirEnd of Life Care (EoLC) knowledge and skills.We believe that the sum of the two would be greater than the separate parts. The use of anaction learning setwas purposeful, hoping to develop a sustainable supportive local network of managers.

Action learningis sometimes referred to as group coaching; the premise is that real life problems would be brought to the “set” for discussion. The problems shared related either to EoLC or to people management. Within each of the ten days there was a dedicated slot, typically 90 minutes to teach on a particular EoLC topic.

Scammellet al2012 in their service evaluation of our project concluded “This evaluation provides compelling evidence that an action learning approach to EoLC education can be used to empower middle managers to have positive impacts on EoLC provision through not only increasing specialist knowledge but also enhancing their capability to engage in a confident and informed manner with a diverse range of stakeholders”

Many hospices engage in delivering education to care homes. Care homes often operate in a competitive market but in our project we witnessed action learning sets breaking down any potential barriers. This is very important since creating supportive networks could increase retention of middle managers, high turnover of this group arguably impacts on moving forward with good EoLC initiative’s such as advance care planning.
P2 Making the Difference: An Alternative Care Home End of Life Education Approach
Authors: Russell Sarah , Loney Jo , Miller Helen , Nicell Claire , Willoughby Janet
Published: October 2013

Society is aging and we are living longer. By 2035, deaths in the over 85’s will represent 50% of all deaths in the UK and older members of our society will be more likely to die in a hospital or care home (Calanzani et al 2013).

The NHS Health East of England ABC blended learning programme consists of 7 modules (face to face, e-learning or both), follow up workshops, resources, DVD’s, mentor support, audit materials and Train the Trainer project (http://www.endoflifecarelearning.co.uk/)

A recent evaluation comparing the ABC care home programme in Hertfordshire vs 2 national equivalents in Suffolk, Bedfordshire, Peterborough and Luton concluded:

Well-evaluated education, sustaining learners in practice resulting in athe most cost effective programme with highest completion rates (97%) and reduced hospital admissions.

Recomended education programme

‘Several features that have made the ABC Training Programme more accessible to nursing homes. These include the flexibility about when the training commences, and the fact that staff are able to complete modules within their own timeframe and at their own pace. This blended learning approach also combined the e-learning with visits to the nursing home where the trainers were able to provide additional support and encouragement to staff to complete the training’ (Pyper et al 2013).

‘It is recommended that as currently nursing homes staff turn-over is very high, EoLC standards are more likely to be maintained by commissioning the trainers to continue their relationships with the nursing homes and offer infrequent on-going support sessions as required.’ (Pyper et al 2013).

The ABC programme is now validated as an alternative end of life education programme making a difference combining learning with mentorship and site visits. This education model is recommended particularly for struggling care homes.