National Implementation Group for Terminal Illness meeting minutes: 1 October 2020 - extraordinary meeting on harmful information

Attendees and apologies

• Dr Linda de Caestecker
• Dr Alison Potts
• Clare Young
• Claire McDermott
• Donna O’Boyle
• Gordon Dawson
• Helen Malo
• Jo McKay
• Meg Sydney
• Dr Mini Mishra
• Dr Pat Carragher
• Richard Meade
• Sandra Campbell
• Rod Finan
• Dr Drummond Begg, Scottish GP’s Committee, BMA
• Craig Smith, Scottish Action on Mental Health (SAMH)

Apologies

• Dr Teresa Cannavina
• Iain Macritchie
• Susan Webster 
• Dr Patricia Moultrie (BMA)

Items and actions

Welcome and Introductions

The Chair welcomed members to the meeting and members did a round table of introductions.

Withholding harmful information

The Chair explained the meeting was to discuss situations when clinicians might make a judgement to withhold information from their patient because they determine that if they were to become aware of it, it would cause them serious mental and/or physical harm. Although it is rare, sometimes a clinician will share information with the Department for Work and Pensions in a DS1500 form (soon they will share with Social Security Scotland through a BASRiS form) to enable their patient to receive disability benefits. The meeting provides an opportunity to discuss suggestions for reporting on when harmful information is withheld and the practical implications of these.

Explanation of the provisions in the social security administration and tribunal membership bill

Officials gave the group an explanation of the non-disclosure of health information provisions in the above Bill. These will allow Social Security Scotland to withhold information from a client where a medical professional has confirmed that they have withheld the information because they determine that to know it would cause serious harm to the physical and/or mental health of the recipient.

Social Security Scotland’s notifications to clients will refer to the reasons a determination has been made. This information will ensure clients can understand their award and consequently fully exercise their redetermination and appeal rights. The provisions in the Bill will allow Social Security Scotland to send an amended letter to clients where appropriate. This amended letter would not disclose the information, which in the clinician’s judgement could cause serious harm to the individual.

There has been some interest in these provisions which included a proposed amendment at stage 2. This amendment would have required Social Security Scotland to report on whether harmful information has been withheld because it would cause either serious physical harm or serious mental harm. This amendment was later withdrawn.

The Bill was passed in parliament on 29 September 2020 but the Cabinet Secretary for Social Security and Older People has supported further engagement with stakeholders on this issue.

The Cabinet Secretary has already committed to reporting annually on how often these provisions have been used in relation to both the applications for standard Disability Assistance, and also applications for Disability Assistance on grounds of terminal illness. This is provided the numbers are not so low that it could lead to identifying clients.

SAMH’s concerns

SAMH had concerns regarding the provisions relating to non-disclosure of health information. SAMH are largely content with the provisions included in the Bill and specifically that it will be clinicians who decide whether to withhold information. They also welcome the Cabinet Secretary’s commitment to report annually on the use of the power within the necessary caveats for publishing of identifiable information.

SAMH had concerns around the wording of the provision in the original Bill. SAMH were keen to understand what was meant by ‘serious harm for physical and mental health’ and wanted to ensure that this provision is used proportionately. SAMH explained that similar provisions for withholding information from patients, particularly under the Mental Health Act, include safeguards such as the Mental Health Tribunal and the Mental Welfare Commission who act as the main contact for the patient. SAMH were particularly focused on patients who are not terminally ill as they don’t have a background of working with terminally ill people.

Officials explained that the General Medical Council updated their 2008 guidance on consent which will come into force on 09 November 2020. The GMC states that all actions by doctors should be proportionate and gives leeway for professional clinical judgment.

One of the concerns of the Chief Medical Officer is the separation of physical and mental illness. They discourage the separation of these as every patient should be looked at holistically and serious physical harm is likely to also cause mental harm and vice versa. Members agreed with this.

Another issue raised by officials was that the Data Protection Act and the GMC both state that information should only be withheld if the harm is “serious”. This should be made clear to clinicians for example in the relevant section of the CMO guidance.

Officials raised the question of how Social Security Scotland will be informed that the information is no longer being withheld from the patient. Although the benefit will have already been approved at this stage it is still important that Social Security Scotland are aware if information no longer needs to be withheld as this could affect future notifications. The group agreed that a simple contact method would be best as this likely won’t be something clinicians have to do often. Officials will explore possibilities with service design colleagues.

Officials clarified that although a patient may not know that their illness is terminal, they should still be aware that their clinician is submitting information to support an application for Disability Assistance. Officials noted that the wording of notifications is under development but the preference is that no communications will specifically refer to terminal illness. However there are requirements to be transparent with clients including the reasons for making an award. The group agreed that although the language used should be sensitive, we should be open with clients. 

Members asked whether there was specific medical guidance for the Nursing and Midwifery Council (NMC) as there is for the GMC in terms of withholding information. Officials responded that while guidance from the NMC is not as detailed as that of the GMC, the code is overarching and all nurses and midwives should act in the best interest of the patient and make a professional judgment when deciding whether to withhold information. Nurses are not expected to do anything contrary to what is provided in the CMO guidance on consent which itself aligns with GMC guidance.

Members explained complications could arise with children and young people as this is a complex area and there are a number of different rules regarding age, consent etc. Often parents choose to withhold information from children aged 13/14 and below. Children tend to ask questions, especially if they have been admitted to a hospital or hospice so this makes withholding information more challenging for clinicians. Consent is a big issue for children aged 16 to 18, especially for children who don’t have capacity. Officials confirmed that the application for Child Disability Payment would be in the name of the parent/guardian/appointee and a notification of the determination would go to them, rather than the child.

The group discussed how further insight into the reasons harmful information is withheld could be gained. The group agreed that looking at anonymised worked examples could be beneficial to find out more information about this. This could include using a range of different worked examples and speaking to the clinicians who had withheld information to understand their reasoning. It was suggested Sandra Campbell and Dr Drummond Begg would provide examples of clinicians withholding harmful information. Patricia Moultrie who was unable to attend this meeting would also be approached to enquire if they could also provide examples. Pat Carragher will provide examples relating to children and young people and the complexities there.

Action: officials to investigate with service design regarding how a clinician could inform Social Security Scotland that information is no longer being withheld from a patient.

Action: members to provide examples of clinicians withholding harmful information.

Close

Meeting 5 of the Terminal Illness National Implementation Group will take place on 10 November.

The Chair thanked members for attending the meeting and closed.