Published on 18 January 2024
Embedding Personalised Care Planning into the community
By Millie Wells, Project Support Officer, Cheshire and Merseyside Cancer Alliance (CMCA)
Personalised Care Planning (PCP) is a process which assesses someone’s health and wellbeing needs – an essential part for anyone’s cancer journey.
The aim of a PCP is to build a plan based on the needs of the individual which can guide their treatment and care, and a pilot project in Cheshire has tried to embed this within the community through the help of primary care and a group of ‘champions’ to support it.
The Personalised Care Programme at the Cancer Alliance collaborated with The End of Life Partnership (EOLP) – a Crewe-based organisation that promotes compassionate and personalised end of life care – for a pilot project that delivered PCP in community settings in central Cheshire for people living with and beyond cancer.
What is the project?
The project’s interventions were delivered from August 2022 to July 2023 to a cohort of patients with a diagnosis of lung or haematological cancer.
After conducting research around what PCP was available to Cheshire residents, it was recognised that there was a need to increase the number of Holistic Needs Assessments (HNAs) carried out. A HNA is a process of understanding a patient’s requirements for physical, emotional, practical, financial, and spiritual support, usually through discussions and/or written questions between the patient and a health professional, which can be a Social Prescribing Link Worker (SPLW).
With the input of Macmillan Cancer Support, it was proposed that offering a HNA at the end of cancer treatment, once the patient had been discharged from the hospital, would support those patients, and give them confidence in their recovery.
It was agreed that Macmillan’s eHNA – a web-based, electronic form of HNA – would be used as part of the pilot, to ensure high-quality care was tailored to everyone who participated in the project. The eHNA is a convenient and secure way to provide the HNA that can be completed with a web browser, smartphone, tablet or another digital device.
The eHNA is made up of three parts:
- Questionnaire – this allows patients to rate their concerns from 1 to 10 based on their individual needs. This typically takes patients 10 minutes to complete.
- Conversation – Patients are given the opportunity to discuss their needs and concerns with the SPLW.
- Personalised Care Plan – Both the questionnaire and conversation with the patients will be used to create a plan, which typically includes information to help patients self-manage, along with contact details of any helpful organisations or services.
South Cheshire and Vale Royal GP Alliance secured the support of its Primary Care Networks (PCNs) for the project. The PCNs gave a commitment to appoint one of their SPLWs to be a Personalised Care Planning ‘champion’ for their group of GP practices. The champions delivered the eHNA intervention.
This was the most effective way to deliver the eHNA due to the level of anticipated referral numbers and meant that some champions supported patients from other practices as well as their own.
Building Relationships
To contribute to the success of any project, it is important to build relationships with partners to improve engagement. EOLP built a relationship with the local GP Alliance early in the project as it was recognised that it would be the best-placed partner to obtain commitment from PCNs.
This decision was based on the practicality and long timescales it would have taken for EOLP and the Cancer Alliance, organisations which could be unfamiliar to GP practices on an individual level, to build trustworthy relationships with each primary care team.
The GP Alliance already had good relationships established within the PCN, which meant that they were able to communicate directly with the 29 practices involved.
These strong relationships helped to ensure that 24 of the 29 practices within the project catchment area agreed to take part in the pilot project. This is the equivalent of coverage for 87% of the population based on practice list size.
Lessons learned:
- Time – Building relationships took longer than anticipated. Relationship building time should be included in the project scoping, ensuring there is enough capacity from all partners involved to do this
- Operational issues – Not having 100% coverage caused operational issues for referral teams, something which the project team supported to navigate
- Communication – Due to the communication pathway, the project team was remote from the discussions with individual practice managers. Therefore, better use of the EOLP clinical lead to support the GP Alliance would be used in a similar project.
Developing a microsite
The project team included a communications and engagement lead who created a microsite for the project, a small website which was used as a central repository for all the project documentation, patient leaflets, pathway documents and more.
The microsite enabled partners and members of the wider team to have access to all the relevant resources during the lifetime of the project. This played a successful role within the initiative, as it was a simple and effective way to share up-to-date resources and eliminated out-of-date resources being used, for example the referral pathway.
Lessons learned:
- Maintenance – Both setting up and maintaining the microsite required a team member with the relevant skills. Planning for the project team included this role from the outset.
Education and employment opportunities for SPLWs
This project initially provided education, training, and networking opportunities for the PCP Champions, but this offer was then extended to include other SPLWs, with the result that 25 individuals took part in education over the course of the project.
Ongoing training was key to securing SPLW engagement and the aim of the education programme was to improve the learner’s knowledge, skills and confidence in different topic areas, such as supporting patients with information, management of symptoms, use of the Macmillan eHNA, personalised care planning and more.
To ensure that the education programme was both relevant and effective, an initial induction event was held for the Champions, so they were able to contribute to the development of the programme, as well as providing feedback on content, format and frequency.
From the advice that was received by the SPLW team, the programme set up forums on different days and times to reflect different working patterns. The education programme was then extended to include all SPLW so that more people could benefit. This also provided an opportunity to bring in colleagues from different organisations, including the Macmillan Information Service, various therapies and from primary care.
The team displayed a high level of involvement during the educational events and showed that they valued the chance to apply what they had learned in their workplace.
One participant stated: “Training was brilliant. The events were really engaging – we were able to have open and honest conversations and had debates where you were allowed to disagree.”
The table below displays how the education programme affected the learners’ knowledge, skills and confidence across all subject areas covered. The use of the Macmillan eHNA, palliative and end-of-life care and non-clinical management of breathlessness and fatigue all saw significant improvements.
It is important to note that non-clinical management of stress and anxiety was the subject area with the least progress. A SPLW's usual workload will include patients with a variety of physical and mental health conditions. Therefore, the relatively small development in knowledge, skills, and confidence may be an indication of SPLWs’ high levels of confidence in their ability to manage patients who are stressed or anxious.
Lessons learned:
- Forums – The forums set up initially had good engagement but over the course of the project the attendance dipped. This may be due to the number of referrals being lower. Perhaps for next time, the days and times that they take place will be evaluated monthly to avoid wasted resources
- Networking – One key benefit of the education programme was the networking opportunities it presented for the participants.
Using the Macmillan eHNA
The Macmillan eHNA was a valuable resource tool within this project and SPLWs reported a positive experience with the platform.
Macmillan provided training at the education induction events, which was then reinforced by the project team along with one-to-one support and troubleshooting. The project also provided an opportunity to share completed care plans with primary care and the acute trust.
It must be noted that one of the reasons the platform was chosen for the delivery of PCP was the assumption that patients would be familiar with the platform due to completing either a Macmillan HNA on paper or electronically at the point of their diagnosis or during treatment. However, the project findings would suggest that this level of recognition was over-emphasised.
Lessons learned:
- Restrictive thinking – Using the eHNA system, as opposed to the hard copy version of the assessment, may have caused barriers for some patients who either did not have internet access or who were not confident in using online tools
- Complex set up – The platform is typically used for one organisation but due to some SPLWs providing the service to patients from their own and other GP practices, this was not the case. Therefore, further work for Macmillan was produced as the teams had to be set up separately
- Clinical system integration – Greater integration of the eHNA into acute clinical systems and adapting the platform for use in other settings was needed and this is an area that Macmillan is already working on
- Measurable outcomes – The eHNA platform does not include any measurable outcomes. There is, therefore, no quantitative way to demonstrate the impact of using the tool.
Despite this project not moving forward, the one-year pilot had many successful factors and presented valuable learning after it had finished.
It is hoped that other projects will benefit from the lessons learned that were presented throughout. The Cancer Alliance collaborated with multiple partners on this project, which the EOLP led on.
CMCA Associate Director Tracey Wright said: “This pilot has been really valuable in gaining significant learning. The Cancer Alliance will be using the learning to help shape future work and approaches around integrated personalised care for cancer patients across Cheshire and Merseyside. It also showcases some brilliant examples of partnership working and the benefits of collaboration.”
The End of Life Partnership gave positive feedback about working in partnership with the Cancer Alliance on the project.
Catherine Morgan-Jones, EOLP’s Director of Service and Practice Development, said: “EOLP was delighted to work with Cheshire and Merseyside Cancer Alliance on this project. Whilst the project threw up some significant challenges in terms of patient engagement and data reporting, the organisations involved in the project team have used these to develop their thinking and understanding of how PCP is delivered.
“The project has tested many of our initial assumptions about what patients want, where they want to receive support and psychological readiness to move beyond treatment. The work also confirmed the importance of relationships and partnerships in delivering any successful project.
“We hope that this learning will benefit other projects using PCP in the community.”
On behalf of CMCA, we want to thank all participating partners for their involvement in this project.
For further information on the eHNA see: Holistic Needs Assessment (HNA) | Healthcare professionals | Macmillan Cancer Support