Respiratory care action plan draft: consultation report

Question 7: Palliative care 

Commitment 7 – We will work with NHS boards, clinicians and the third sector to reduce inconsistencies in the provision of best practice palliative care for people with a lung condition as they near the end of life 

A total of 114 people responded to this question, with 39 responses being expanded to include comments. Of those, a majority (103) agreed with the commitment on palliative care, with a minority (4) disagreeing or not knowing (7). 5 people did not answer the question. To further breakdown the figures of those who responded:

• NHS (boards and organisations) 10
• Third sector organisations 14
• Private sector companies 7
• General public individuals 83

Overall, the general themes that came out of the responses to this question were: inequalities in access; patient pathway; person-centred care; communication between care settings; anticipatory care planning, and staffing and training.

As seen in the number of 'yes' responses there was wide agreement about the importance of palliative care, and several responses noted that it is currently an area that needs improvement and improved access, especially when compared to palliative care experienced by cancer patients. A number of the expanded responses noted that this section links into other areas of the Plan, particularly early and correct diagnosis, mental health and workforce.

Breakdown of the most common themes:

Inequalities

Inequalities and the variation of access to palliative care across Scotland was raised by respondents. It was generally agreed that palliative care must be made available to all, and the need for local health boards to follow best practice. 

Pathway 

When discussing palliative care, respondents noted that health boards, clinicians and where relevant the third sector need clear respiratory care pathways to provide consistent care. Whilst end of life care is very important, people with respiratory conditions would benefit from accessing palliative care at any stage of their journey and the Plan should reflect this. 

There were also mixed responses around the role of the third sector in palliative care, with some respondents of the view that it would be a good thing, others expressing concern around governance and accountability. 

Person-centred care 

It was generally agreed by respondents that the importance of person-centred care could not be over-estimated; identifying what matters most to people with respiratory conditions is a fundamental right and empowers everyone to ensure that appropriate support is aligned with the wishes of the patient and their family. It was suggested by some respondents that a holistic needs assessment for all terminal patients with respiratory conditions, as well as those with life-limiting conditions, as early as possible would ensure the right long-term support. 

Communication between care settings

Communication between care services and with people with respiratory conditions was another area which the majority of respondents commented on. It was clear from many of the responses that the patient's wishes needed to be made available to everyone involved in their care to ensure appropriate support. 

Anticipatory care plans

There were mixed views from respondents on how early an anticipatory care plan (ACP) should be discussed; with some responses noting that introducing it too early could have a negative effect on a person's wellbeing and others noting that they should be introduced as early as possible in the patient's journey, either after a diagnosis has been made or at any point during their journey. 

Staff and training

There was an awareness that this subject requires training for staff, especially if it allows local delivery, and education for people with respiratory conditions, their carers and families. There were calls for dedicated palliative care teams in two responses and – as part of a general theme across the consultation responses – there were multiple calls for recognition of the role of pharmacists in end of life care. 

General

Several respondents noted the need to expand this commitment or further define the approach to be taken. There were calls to expand the commitment to include Allied Healthcare Professionals, and to consider adding a specific mention of breathlessness support services. 

A chart showing phrases from the Q7 responses. Person-centred care had 8 mentions; communications had 3.

A chart showing phrases from the Q7 responses. Person-centred care had 8 mentions; communications had 3.