Respiratory care action plan draft: consultation report

Question 8 – Person-centred and self-management

• Commitment 8 – We will provide tools, and information for people with lung conditions to support effective self-management practices by:
  • working with NHS Inform, and stakeholders across the Respiratory
  • Community to improve the range of information available on respiratory
  • conditions;
  • supporting further development of a local Information System for Scotland (ALISS) as a national resource for sign-posting people with respiratory conditions to care and support;
  • supporting health literacy to ensure that people have the knowledge, skills, understanding and confidence to use health information, to be active partners in their care, and to navigate health and social care systems;
  • working with partners to increase access to community-based support for an effective
• Commitment 9 – Support innovative technologies to enable people to be actively involved in their respiratory health
• Commitment 10 – Support unpaid carers accessing appropriate information and support their health and wellbeing

'Do you agree with commitments 8, 9 and 10?'

Option	Total	Percent
Yes	102	85.71%
No	2	1.68%
Don't know	7	5.88%
Not Answered	8	6.72%
Total	119	100%

A total of 111 people responded to this question, with 50 responses being expanded to include comments. Of those, a majority (102) agreed with the commitments on person-centred and self-management, with a minority (2) disagreeing or not knowing (7). 8 people did not answer the question. To further breakdown the figures of those who responded:

• NHS (boards and organisations) 7
• Third sector organisations 12
• Private sector companies 7
• General public individuals 85

Overall, as seen in the number of 'yes' responses there was wide agreement for the need to have appropriate support available to enable people to self-manage their condition. The general themes that came out of the responses were: anticipatory care planning; digital; treatment; staff, services and training; education; carers; and inequalities.

Breakdown of the most common themes:

Anticipatory care planning

In total, several respondents commented on Anticipatory Care Planning (ACP), citing the importance which this plays in self-management and the importance of having this discussion as early in the process as possible.

Other common themes around ACP included the need for an increased awareness of the discussion, recognition that these discussions are often difficult and if not handled appropriately, can lead to adverse outcomes for people with respiratory conditions and their families.

There was wide agreement that ACP should be taking place, with some calling for specific targets to be included in the Plan. The role of realistic medicine was mentioned, and the importance of shared decision-making.

Digital

A number of respondents emphasised the role in which smart technology has as a method of supporting self-management.

It was suggested by some respondents that promoting the use of technology could help to improve access to online education and quality assured and trusted information. The benefits of innovations such as smart watches and mobile phone applications were highlighted as a means of accessing information as well as other educational packages.

Respondents were of the view that Commitment 9 required expansion and clarification, and overall the majority of responses were positive about the inclusion of technology.

Treatment

While this is reflected in a separate commitment, pulmonary rehabilitation was recommended as a possible solution to help people with respiratory conditions manage their condition for both physical and mental benefits.

Staff, services & training

Several respondents mentioned the role in which staff can support patients with respiratory conditions. It was suggested that additional resources are required to provide an appropriate level of support for people with respiratory conditions in the form of extra expenditure for staff recruitment and training.

Others noted the importance of Allied Healthcare Professionals, stating that they are vital to patients with respiratory conditions self-managing their condition effectively and should be given a more prominent role in the Plan.

Education

A number of respondents highlighted the importance of education as a means to improving self-management, with an emphasis on providing quality assured sources of information to be available to those living with respiratory conditions.  It was noted that an improved knowledge of health conditions could be empowering for people with respiratory conditions and assist in their care.

The importance of educational packages was also raised, noting that health literacy in particular must be carefully considered during development in order to ensure the relevant information is comprehensible for those needing to access it.

Carers

It was noted by respondents that Commitment 10 as currently worded, is not clear. Clarification is required to ensure that the commitment makes clear that the intention is to provide support for carers accessing appropriate information as well as for those already receiving the information.

Inequalities/variation

There were comments from respondents about differing levels of engagement in self-management, with suggestions that those struggling to self-manage require more timely access to healthcare professionals and peer support within their local communities.

Other comments reflected the use of technology included the encouragement of NHS Near Me, particularly to support those living in remote areas to attend appointments virtually.

A chart showing phrases from the Q8 responses. Data and technology had 18 mentions; training had 1.

A chart showing phrases from the Q8 responses. Data and technology had 18 mentions; training had 1.