Response to GMC - Confidentiality: a draft for consultation

Introduction

Alzheimer Scotland is Scotland’s leading dementia voluntary organisation. We work to improve the lives of everyone affected by dementia through our campaigning work nationally and locally and through facilitating the involvement of people with dementia and carers in getting their views and experiences heard. We provide specialist services such as day care, home support and carer support (through training programmes and support groups) in over 60 locations and offer information and support through our 24 hour freephone Dementia Helpline, our website and our wide range of publications.

We welcome the opportunity to comment on the confidentiality draft guidance. People with dementia are a key consideration given the progressive nature of the illness and the projected increase in the level of incidence. The number of people with dementia will increase dramatically from approximately 62,500 in 2008 to 108,000 by 2031.

We have responded to the questions on patients who lack capacity, as this is of direct relevance to people with dementia and carers. We acknowledged the difficulty of formulating guidance when considering our response; information-sharing when a person lacks capacity is a complex issue to resolve.

Disclosure about patients who lack capacity to consent

Q17. Do you think the draft guidance is consistent with the legal framework?

Yes the draft guidance is consistent with the legal framework in Scotland. Explanatory footnotes 21, 23 and 24 provide the appropriate legal references; the reader is also informed where to seek further guidance.

We welcome the reference in paragraph 50 to GMC guidance Consent: patients and doctors making decisions together, as this provides appropriate guidance on assessing patients’ mental capacity.

Q18. Unless they indicate otherwise, it is reasonable to assume that patients would want those closest to them to be kept informed of their general condition and prognosis.

Is this a reasonable assumption?

No, paragraph 58 is not a reasonable assumption. It creates the risk that information sharing becomes the norm and is disclosed as a matter of course. Each case should be considered in isolation; information disclosure should be on a need to know basis and consistent with the principles of the Adults with Incapacity Act.

We acknowledge paragraph 55 states there is not a general right of access to the patient’s record or to have irrelevant information. However, paragraph 58 is a strong assumption and could be referred to in isolation.

Q19. Do you think this new guidance is helpful?

Yes, on balance the guidance raises the key issues and provides valuable direction to GMC members.

Further considerations

• Sharing information within the healthcare team or with others providing care in paragraph 24 creates ambiguity. Clarification is required to determine who it is referring to e.g. is it referring to the wider health care team or does it also include social care.
• We would like to see an addition in paragraph 54 on people being counselled on the benefits of disclosing diagnosis to family when they are ready. This is important in relation to dementia and other life limiting terminal illnesses. Close family or relevant others need to understand so they can give appropriate support and seek help when the patient is unable to do so for themselves.
• The guidance should acknowledge the status of the unpaid/family carer. The vast majority of care is provided by them and their role is often crucial to the ongoing wellbeing of the person with dementia.

28 November 2008