Fatal Accident Inquiry into the death of Roderick McIntosh Donnet
Press release 1 August 2007
Statement from Down's Syndrome Scotland
Down's Syndrome Scotland extends sympathy to the family of Roddy Donnet and share some of the concerns raised in the FAI report. Taken individually, the catalogue of errors in the care of Roddy Donnet are sadly not unique. Together the resultant circumstances in his care and treatment proved catastrophic.
Down's Syndrome Scotland is a national Scottish charity providing advice, support and information to people with Down's syndrome, families and professionals. The average life expectancy of people with Down's syndrome continues to increase with many adults today living to aged sixty and over. A number of resources and publications have been written about Down's syndrome and dementia which can be accessed in this website. Copies of articles published in academic journals based on Masters and doctorate research of the Director can be requested from the national office.
It is clear from the findings of the enquiry that staff in different sectors have not received training in working with people who have Down's syndrome and dementia or in the Adults with Incapacity (Scotland) Act, 2000. Examples of this include no awareness of the link between end stage dementia and epilepsy in people with Down's syndrome or the effect that the environment, such as bedroom mirrors, can have on a person with Down's syndrome and dementia.
We can confirm the belief of the Donnet family and Miss Stewart that Down's syndrome cannot be a cause of death, although it is not the first instance that we have encountered of this being recorded as such on a death certificate. The absence of a speech and language therapist in Roddy's end of life care is noted. Further issues of palliative and end of life care in people with Down's syndrome are raised and remain largely unresolved. All too often people with Down's syndrome are not involved in planning for the end of their life or informed of the possible outcomes or treatments. Families or carers may subsequently make decisions that are not based on the preferences of the person with Down's syndrome.
Down's Syndrome Scotland maintain that all efforts should be made to inform people with Down's syndrome (where practical) and their family of the diagnosis of both dementia and concurrent medical conditions. Appropriate and consistent words and terms should be used that can be reinforced by all involved. Down's Syndrome Scotland produce information for professionals to highlight medical conditions that people with Down's syndrome are more prone to and also to highlight the early signs of dementia in people with Down's syndrome, which can differ to the general population.
We support the recommendation of a specialist nurse in learning disabilities at Ninewells Hospital, Dundee. Roddy's reluctance to be admitted to hospital is understandable and common among people with learning disabilities. Many national health establishments still have some way to go in terms of staff training in welcoming and understanding the needs of people with learning disabilities. General Medical Council draft consultation guidelines 'Consent: patients and doctors making decisions together' considers that home visits may be appropriate for people with learning disabilities due to their fear and lack of understanding of the hospital environment. For a consultant to dismiss home visits due to 'not seeing any point', suggests that not all parts of the health service share this foresight.
Baseline assessments for people with Down's syndrome should happen annually from the age of thirty onwards due to the known medical conditions associated with ageing in people with Down's syndrome.
Overall recommendations as a result of this enquiry are:
- The role of siblings in the planning of care for people with Down's syndrome should be taken seriously, especially after the death of a parent. There can be no substitution for the information that a sibling can provide, even if the family do not live geographically close to each other.
- Far reaching discussions should begin at strategic level, with research commissioned, to determine the most appropriate form of accommodation for people with Down's syndrome when they have dementia.
- Greater acknowledgement should take place of the importance of the bereavement process experienced by people with a learning disability.
- Consistent, easy to understand terms and language should be used when sharing a diagnosis with people who have Down's syndrome and their carers.
- Training on Down's syndrome, dementia and palliative care should be accessed to a far greater extent by staff in health and social care. Training providers in the voluntary sector, along with the numerous resources that are available, should be utilised in addition to statutory services.
Karen Watchman
Director, Down's Syndrome Scotland