Browser does not support script.
Skip to main content
Just over three years ago, Macmillan funded a project to support care homes to improve the residents’ quality of life. The initial stimulus for the work was based on Kathy’s observations in her previous role as the Liverpool Care Pathway Facilitator for Derby and Burton Cancer Network. She and colleagues observed that care home staff felt unsupported, lacked confidence around end-of-life care, and that few had received palliative care training.
To address these gaps, Kathy developed the Macmillan Life Enhancing Care Home Programme. Macmillan funded the project for care homes but the primary care trust decided the focus should be on nursing homes as district nurses were already giving some support to residential homes.
The programme uses the successful interventions highlighted in the NHS End of Life Care Programme and the National Council for Palliative Care’s (NCPC) resource, Building on firm foundations. The NCPC’s resource describes a range of interventions that can have a positive impact on the care of care home residents. It was produced following the NCPC report, Improving palliative care provision for older people in care homes, in which it expressed its concern over the provision of end-of-life care in care homes.
We then worked together to implement the programme across Derby City and Derbyshire County – an area that has 119 nursing homes. Ultimately, our role is to enable nursing home staff to work more effectively. This involves supporting staff to improve the quality of life of their residents by using the framework of the newly-developed programme.
The most challenging part of the role is to increase the self-esteem of nursing home staff, while offering enough challenge to improve practice. Another important facet of the role is to support staff to work in partnership with other health and social care professionals.
The overall aims of the project are to:
- enhance the quality of life of residents living with cancer in nursing homes
- improve the palliative care provided in nursing homes
- provide a confident, competent and skilled workforce within nursing homes
- establish localised ‘learning networks’ to promote sharing of good practice, mutual support, and to prevent professional isolation
- provide better continuity of care for residents by increasing staff satisfaction through education, training, promoting staff health and well-being, and improving staff retention as a result.
The programme uses a holistic approach as the World Health Organisation’s Healthy City and Healthy Hospital programmes demonstrated that education alone does not change behaviour – there has to be a supportive environment too. Therefore, as well as addressing educational needs, we use findings from other initiatives, such as Age UK’s (formerly Help the Aged) My Home Life and The Care Home Learning Network, to give added value to the education provision.
A key part of the programme is to recognise positive practice in nursing homes and to encourage homes to promote staff well-being. This will encourage staff to feel good about themselves because they are meeting the needs of the most vulnerable in our society.
When we start working with a new nursing home, we begin by using a baseline questionnaire with the manager or matron to determine the strengths and areas for development within the home. The questionnaire covers information relating to the six areas covered by the programme.
The questionnaire takes around one hour to complete. In most cases it is done during an initial face-to-face meeting between the matron/manager of the home and the facilitator.
Following this, an individualised action plan is made with the nursing home. It includes the following headings:
- What do you want to achieve?
- Who/time needed.
- How do you know you have achieved your aims?
Support is then given to implement the action plan. The type of support varies according to the individual needs of the nursing home staff, but all homes receive a resource folder, education and a contact person. At the end of the first year, a follow-up questionnaire is used to evaluate progress. Although the initial idea was that a home would complete the programme, this has not proved to be possible for a variety of reasons usually related to nursing home staffing (eg key staff leaving, staff sickness).
So once the home demonstrates that it has made progress in all six areas of the programme, staff receive a certificate. Where possible, these are presented to the nursing homes at conferences to celebrate their success.
1. Involvement of residents, family and friends in care home life
Each resident, and their family if the resident wishes, is supported to be involved in all decisions about their care. This will include some decisions about how the nursing home is organised day-to-day, for example, decisions regarding menus and activities. Homes are free to develop this area as they wish.
2. Staff education
All members of staff are competent and confident to support residents’ care needs whether it be rehabilitation or palliative care. Nursing and care staff are confident and competent at discussing sensitive issues with residents and their families.
3. Effective use of end-of-life tools
Nursing staff working with other health professionals identify residents in the end-of-life phase and use end-of-life tools such as advance care planning, the Gold Standards Framework approach and the Liverpool Care Pathway to promote holistic care and comfort for residents and their families.
4. Equitable access to health services
The home has good links with a range of health services and uses these as expert resource to improve the quality of care of their residents, and improve staff confidence and competence.
5. Staff well-being
The management of the home listens to staff and acts to meet their needs to support staff to cope with the physical and emotional stresses of their role.
6. Community links
The residents of the home feel they are part of the local community. They feel integrated into the life of the community because of visits by local organisations and where possible, they visit local amenities and events.
Macmillan’s Foundations in Palliative Care course has been the corner stone of the education provision in the programme.
It includes four modules:
- First Principles
- Pain and Symptom Control
Participants are expected to attend all four modules, which are usually delivered as one module a day and hosted by one of the participating nursing homes. This course is facilitated free of charge. Most participants find that the course deepens their understanding of the needs of residents and gives them an opportunity to reflect on their practice in a supportive environment.
Staff are encouraged to do follow-up work in the home to ensure theory is related to practice, for example, reviewing how they help new admissions settle into the home or introducing pain assessment charts. Other education sessions are provided as needed.
Topics include: advance care planning; use of syringe drivers; and training for activity coordinators. We have run five conferences, which have been specially tailored to the needs of nursing home staff. These have proved very popular.
There have been a number of challenges faced while trying to implement this programme. As mentioned previously, the loss of key staff in some nursing homes has meant progress made was lost. And although most of the homes have been enthusiastic about staff accessing free education sessions, many have found it hard to release a member of staff to come to all four days of the Foundations in Palliative Care course.
A key part of the programme is to give residents and their families an opportunity to have open conversations about death and dying, however, some staff have been worried about upsetting residents and have felt this could prompt complaints from families.
Sadly, some GPs have not been supportive to nursing home staff adopting a more proactive approach, and many nursing home staff are not confident enough to be assertive with GPs who dismiss their requests for cooperation, for example, for the provision of anticipatory drugs.
The homes have benefitted from access to palliative care education, end-of-life tools and ongoing support from a dedicated facilitator. Staff have said that they feel supported. One registered nurse commented, ‘We feel someone is looking out for us.’
Ideally we would have liked to measure the impact on the quality of life of residents but we could not find a tool that we felt suitable to use with residents, because of the level of cognition required.
- To date, 28 of the 119 homes (24%) have achieved the Macmillan Life Enhancing Care Home Certificate.
- 70% have implemented a proactive approach to end-oflife care, advance care planning and developing a supportive care register, as shown by the difference between the baseline and final questionnaire.
- Over the last three years, 38 Macmillan Foundation in Palliative Care Courses have been facilitated, providing education to just under 400 staff.
- Hospital admissions for end-of-life care have dropped (a 9% reduction shown in North Derbyshire, although this cannot be directly attributable to the nursing home project, anecdotally this appears to have had a major impact).
It has been difficult to capture data about hospital admissions because they are analysed by postcode, but we record the number of deaths a home has over 12 months, including the number of deaths in hospital and in the home. However, perhaps the real benefit is shown by the following case studies:
We do not need end-of-life care training
‘We do not need end-of-life care training,’ a learning disability nurse said on introduction. Now, she and the team are very proactive in championing the rights of individuals with a learning disability.
Support, training and valuing the roles of the staff working in nursing homes has enabled the team to confidently challenge inequalities in access to healthcare. One such instance was with Joe (name has been changed), a man with a learning disability who was admitted to hospital with oral thrush and dehydration. On his notes, hospital staff had written, ‘DNAR, no transfer to ICU/HDU’.
The nurse from his home challenged this decision as they felt the hospital staff saw the learning disability and therefore perceived Joe had no quality of life rather than seeing him as a person and speaking to the people who had the most insight into his needs.
The DNAR instruction was removed and Joe was treated and discharged back to the nursing home. A further consequence of this is that a staff member from this provider and a service user were involved in the interviews for a learning disability matron who is now employed at this hospital.
Our relationships are so much better now
In one home, the matron supported two part-time registered nurses to take the lead on end-of-life care. They attended a workshop to learn about the principles of proactive end-of-life care planning. The matron allocated them five hours a week each to meet with residents and their families, and where appropriate, to develop advance care plans or where residents lack capacity, best interest end-of-life care plans. The home worked closely with a community matron based at the local GP surgery to develop a systematic and coordinated approach.
The quality of the advance care plans produced was excellent. The key was that the nurses recognised that an advance care plan was not just about filling out a form, but more about a discussion with the resident and the family. They did not rush the
process; they allowed them time to explore options and think about likely events.
The nurses and the other staff at the home recognised that this process supported an improvement in relationships between residents, families and staff, and they developed truly trusting relationships.
There are two main challenges with sustainability – the emergence of the Clinical Commissioning Groups (CCGs) and the fluctuating workforce within the nursing home sector. We have tried to raise our profile within the CCGs, for example, by sending Macmillan reports to board members.
We are encouraged that the CCGs are working on GP alignment with nursing homes (all residents of a nursing home being registered with one practice) to try to improve the relationship between the GP and nursing home staff. It should be noted that if a resident chooses to remain with another GP practice they will be able to.
We will continue to raise the profile of our work within the CCGs and acknowledge the contribution it can make to reducing inappropriate hospital admissions. We cannot resolve the second issue of nursing home staffing, which results in lack of continuity of progress. However, it highlights the urgent need for ongoing support in the nursing home sector and not just in endof- life care.
We hope that the two facilitator posts initially funded by Macmillan will be made substantive The main financial limitation of the project was the lack of administrative support. A small amount has been provided by the primary care trust. However, we have had to devote a substantial proportion of our time doing administration.
Nursing homes have suffered a poor image because of bad publicity surrounding a few homes. Cultural and historical perceptions around the skill levels of nursing home staff from outside nursing homes have also contributed to this. However, we have found that the staff in most of the nursing homes we worked with are very keen to develop their knowledge and skills, and work in partnership for the good of the residents.
In this article we have only been able to give you a brief summary of our work. If you would like more information, please contact us. We believe this project has made a tremendous difference to residents and staff in nursing homes and it demonstrates what partnership working can achieve.
We have worked very closely with our colleagues in the Care Home Team, which includes two clinical quality heads, a quality manager, an infection control nurse, two endof- life care facilitators, Macmillan representatives, GPs, and most importantly the nursing homes.
Email Kathy Gorman|, Macmillan Education Facilitator.
Email Michelle Binnion|, Macmillan End of Life Care, Care Homes Educator.
Kathy qualified as a registered nurse in 1975. She has a Diploma in Nursing (1979), Certificate in Clinical Education (1984), and BSc HealthCare (1995). After developing a Health Promoting Schools programme, Kathy returned to clinical nursing in 2003 and was a clinical educator in a community hospital. She then worked as a Liverpool Care Pathway Facilitator before being appointed as Macmillan Education Facilitator for Nursing Homes in 2008.
Michelle emigrated to the UK from Zimbabwe in 1986. She registered as a general nurse in 1987 and later qualified as a district nurse in 1992. She worked as a district nurse from 1992 to 2009 until the beginning of a three year secondment as Macmillan End of Life Care, Care Homes Educator.
1. End of Life Care Programme and National Council for Palliative Care. Building on firm foundations. Improving end of life care in care homes: examples of innovative practice| [PDF, 714kb}. 2007.
2. National Council for Palliative Care. Improving palliative care provision for older people in care homes|. 2005.
3. My Home Life website|. (accessed 18 June 2012).
4. Care Learning website|. (accessed 18 June 2012).
Part three - Resources|
More from the latest edition of Mac Voice|
Macmillan Learn Zone|
Macmillan Online Community|
Writing an article for Mac Voice?
Download top tips|
Tel 020 7091 2219
If you have any questions about Macmillan we would love to hear from you| .
You can also follow us| on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2013
what are these?|