Terminal illness - definition for the purpose of Disability Assistance - guidance: consultation analysis

Our analysis of responses to the consultation on guidance of the Chief Medical Officer for Scotland, on the definition of terminal illness for the purpose of disability assistance, undertaken between 12 February and 19 April 2019.

The Process for Children and Young People

The second question in the consultation sought views on the process set out in the Guidance as it relates specifically to children and young people. Section 9 of the draft Guidance offers specific advice around how such cases should be managed as well as highlighting the need to consider the views of children and young people in the decision-making process, and how to approach discussions sensitively with this group.

Q2. Do you feel that the Guidance clearly outlines the process as it relates to children and young people?
Response Number Percentage
Yes 34 63%
No 8 15%
No response 12 22%
Total 54 100%

The majority of respondents (63%) expressed that the Guidance clearly outlined the process as it relates to children and young people.

Importantly, however, several respondents, including those who either said 'yes', 'no' or gave no closed response to this question indicated that, as they did not work with children or young people, they felt unable to comment further.

Particular praise was given to the reference to Getting it Right for Every Child (GiRFEC)[3] within the Guidance, as well as reference to the need for appropriate communication strategies to be employed:

"It is reassuring to see acknowledgement of the need for different forms of verbal and non-verbal communication to meet the needs of children and young people. Inclusive communication is key to delivering this and respecting their rights as individuals." [RCGP Scotland]

Among those who agreed that the Guidance was clear in this regard, however, some caveats were put forward, including that information in relation to processes for children and young people could be included as an annex to the main document, since cases would be quite rare.

Comments made by those who felt that the Guidance was not clear as it relates to children and young people included that the section was unnecessary since the BASRiS process is fundamentally the same for children as it is for adults and that information on appropriate communication strategies may also be unnecessary, given that professionals' working in the medical field would already be adept at communicating sensitively with children and young people:

"…there seems little value in having separate sections on children and young people, particularly as it creates an expectation that there will be different requirements or processes involved. Doctors are already well aware of the need to communicate appropriately with and respect the rights of children and young people and it serves little purpose to reiterate this in Guidance that is already lengthy." [British Medical Association (BMA)]

Conversely, one organisation suggested that more could be included to signpost medical professionals to specialists working with younger patients, to ensure that assessments are robust:

"While there is an outline stating that children and young people are also eligible, it would be helpful to suggest that a doctor making the assessment consult a colleague with expertise in care of children and young people with progressive conditions as the progressive conditions are different in this group and take a different course from adults." [Registered Medical Practitioner]

One organisation and one Registered Medical Practitioner noted that they perceived the examples were helpful, as this was a complex area. However, a different organisation suggested that greater clarity could be achieved if the bullets in Section 8 of the document reflect that a formal diagnosis may not be able to be recorded as this may not have been made. This was because not all progressive diseases in paediatric palliative care have a formal diagnosis. This individual highlighted that this lack of formal diagnosis was recognised as an option in the BASRiS form.

A more general comment was made that the wider confusion of Scotland having two forms (with a DS1500 still being operational alongside BASRiS) may be confounded when considering how children and young people fit into the process.

A different respondent suggested that more emphasis should/could be made earlier in the document that the Guidance was for all potential recipients, rather than mentioning children and young people later in the document.

There was also a suggestion from one organisation that reference to Children's Hospices Across Scotland (CHAS) within the Guidance may usefully include a link to the referral page on their website:

Only one other final comment was made that the heading for Section 9 of the Guidance should include babies, i.e. Babies, Children and Young People.



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