Macmillan in the Midlands Recovery Package Resource

HNACare Planning:

A little more detail....

Health professionals will need the following skills:

• Knowledge of where and how to signpost
• Maintaining safe/effective environment
• Effective communication skills
• Effective time management
• Appropriate clinical knowledge e.g. consequences of treatment
• Motivational interviewing skills to support effective self management

... and even more detail...

from the Recovery Package Definitions Document.....

For whom
All people living with cancer should be offered the opportunity to talk through their concerns and needs and make plans to address them. This includes people who may have more complex needs, those who are receiving palliative care, and those at the end of life.
How the assessments and planning are approached – and what they look like – will vary from person to person. The extent to which the assessments and planning will support people to self-manage (with supported self-management being an important outcome for some people) will also vary. This will likely depend on many factors including their:
• type and stage of cancer,
• co-morbidities and long-term conditions,
• life situation and support network, and
• resilience.
However, the intention is to give the most the appropriate level of support to all people. This supports an individual to self-manage to a personally suitable degree.
There is a need to gather the relevant information to understand the extent to which HNAs and Care Planning affect different people and whether significant patterns exist. As a starting point, more systematic collection of data is necessary in order to answer the following questions:
1) Who is offered an HNA and Care Planning (and why)?
2) Who is not offered an HNA and Care Planning (and why not)?
3) Who takes up HNAs and Care Planning (and why)?
4) Who does not take up HNAs and Care Planning (and why not)?
(Please note, ‘and why’ or ‘and why not’ in brackets for each of the four questions above would be explored in evaluation rather than in routine data collection.)
These questions have been included in the Measurement Framework with suggested measures to help answer them. Also included are suggestions on the demographic and clinical data to collect to support the analysis of patterns in terms of who is offered HNAs (or not) and who up takes HNAs (or not). There is also room for flexibility when it comes to gathering additional relevant local data that can further inform these questions. This ‘for whom’ data can be used across all components of the Recovery Package.
Differences from person to person: Some people’s concerns and needs may be resolved as part of the assessment process itself (eg, providing further information, prescribing medication, or low-level emotional support from simply talking things through) or from a further conversation later. Evidence demonstrates that when people are given the opportunity to identify their needs, a significant percentage of those people have their needs addressed immediately and no further action is required at that time.
Other people’s concerns and needs will be resolved through the person taking responsibility for further action in relation to self-care and self-referral. For example, they might become more socially active again, obtain further information, speak to their partner, attend a support group, or undertake more physical activity.
However, for some people, their concerns and needs may not be resolved through taking the above actions and they will need extra support. This may require a referral to another service or help with navigating to the appropriate sources of information and support. For those people that have very complex needs, those in palliative care or those at the end of life, the options for self-managing and taking action will be challenging.
However, it is still valuable to offer HNAs and Care Planning to support a better experience and person-centred care during a difficult time.
Links to stratified pathways:  Conducting HNAs and care plans can also inform decisions about which people are more suited to stratified pathways.  For example, while a person may be classified as ‘low risk’ clinically, if they lack social support and networks this may mean they will still require more intensive support. In this kind of situation, the HNA and care plan function as necessary triangulation tools for stratification by helping to uncover the level of intensity of support a person requires.
When
Holistic needs do not stay static. HNAs and Care Planning should happen fluidly across the pathway. Ideally it should be instigated when the person needs it by either the professional or the person themselves. It is doubtful that this is current customary practice. As a minimum at least two HNAs should be offered:
1) as soon after diagnosis as possible and appropriate, and before treatment begins, and
2) around the end of active treatment and prior to the transition back to primary care.
These expectations align with some regional measurement guidelines on the Recovery Package. They stipulate that the first HNA should be conducted within 31 days after diagnosis and the second HNA should be conducted six weeks after treatment ends. The difference between the Measurement Framework developed by Macmillan is that it is focused on quantifying:
1) the characteristics of people that are offered HNAs (and those who are not offered HNAs), and
2) the characteristics of people that take up the offer of an HNA (and those who do not take up the offer).
(Please note, the characteristics of people are determined by demographic clinical data and the appropriate local data – see the ‘For whom’ section.   Also, the Measurement Framework does use the timeframes of 31 days and six weeks for consistency.)
By collecting this information, we will gain more insight into optimal times for HNAs and Care Planning for different people in different circumstances. This may include people who receive a late diagnosis when there has been no previous treatment, people who it has been decided will not receive treatment, and people where treatment will be ongoing, eg, blood cancers.
We do need a better understanding of if, how and when different settings offer HNAs and Care Planning at the most appropriate times. For example, if a person does not request it, we need to make sure the system offers it based on the points in the pathway that we know are often most meaningful and beneficial to people.
Recovery Package programmes across the UK will want to further explore and understand when the most meaningful points are for HNAs and Care Planning from the perspective of professionals and people affected by cancer in those localities. We can then consider our expectations in relation to the local system perspective on the most ‘natural’ points for aligning HNAs and Care Planning with existing practice. We can also think about what might need to change if there is no alignment. There are questions and suggested measures in the evaluation section of the Measurement Framework to further explore this.
It can be challenging to pinpoint when HNAs and Care Planning are done across the pathway. This can be due to people moving
from one setting to another soon after diagnosis. For example, a person may move care settings just after diagnosis and so secondary care (or the setting in which they were diagnosed) may lose the opportunity to do an HNA soon after diagnosis (if that is the right time for the person). It is then difficult to know if that person will have an HNA and care plan in the setting they move to. If it is not customary practice to do HNAs and Care Planning in the health and social care settings that people move through, then it is harder to ensure they are carried out at the optimal times for the individual.
To help address this challenge it is important that those working in the health and social care system proactively communicate to people living with cancer and their carers about how valuable HNAs and Care Planning can be and when and where they can have them. They can then use that knowledge to access and reaccess the necessary services and support which facilitates self-efficacy and the confidence to self-manage to a personally suitable degree.
Proactive and targeted communication about what is on offer and why it is in the form of the Recovery Package is also important because there is often a plethora of information given to the individual at and after diagnosis. Too much information can be overwhelming. This information can be in the form of leaflets, information sheets, booklets, clinical letters, appointment letters, blood test results and clinical staff business cards. Many people at diagnosis feel overloaded with the amount of information they need to digest. Therefore, proactive, targeted communication, which could be in the form of prompts and reminders for HNAs and Care Planning, are important enablers for the uptake of HNAs and Care Planning. Questions to further explore communication are included in the evaluation section of the Measurement Framework.
Who does it and where
There are variations as to who would facilitate HNAs and Care Planning and in what settings. In some cases, for example, HNAs might happen in a social care or a community setting.
Whichever setting the HNA and Care Planning is conducted in, the consensus in workshops 2, 3 and 4 (see Appendix 1 for those present) was that it needs to be facilitated by a person with the necessary skills and competencies. There was also a consensus that the HNA and Care Planning is an essential early step (not necessarily the first step) after diagnosis. Although HNAs and Care Planning are structured, facilitated discussions to identify and prioritise a person’s holistic needs, prior thought and preparation before the conversation can be effective. For example, the eHNAs concerns checklist can be completed by the individual before meeting with health or social care professionals. The person then has had time to think through their needs and concerns, laying the ground work for a more informed conversation. The conversation can also take place during the development of the care plan depending on whether the HNA and planning are carried out together or in one session or separately.
It is important to note that the conversation does not necessarily have to be face to face, although face-to-face conversations are likely to be preferable for most people. However, other media can be used to have that conversation in real time (eg, over the phone, via Skype or online). The conversation should be between the person living with cancer and a health or social care professional or someone with the capability and skills to support the person to explore their needs and concerns and ways to meet them. There are, and will be opportunities to have these conversations and interactions using digital technology.
To capture the variations in who does HNAs and how, we can say that:
It is a structured, person-centred conversation, interaction or dialogue, in real time, between a person who has cancer and the relevant professional. That professional can be registered or unregistered but they must have the capability and skills to support the person to identify their holistic needs, prioritise them, and facilitate addressing those needs.
(Please note, in some circumstances the conversation, interaction or dialogue can be facilitated by a trained volunteer working in a relevant team.)
This real-time interaction must:
• be focussed on what the person wants to discuss,
• identify what is most important to the person from a range of holistic domains – not just the clinical one – and
• discuss and agree how to address needs in a way that is most meaningful to the person, and assign responsibility between the professional and the person for follow-up actions.