Response to Royal College of Physicians report on inappropriate tube feeding in care homes

The Royal College of Physicians has today published a report, ‘Oral feeding difficulties and dilemmas: A guide to practical care, particularly towards the end of life‘, which highlights the importance of maintaining eating and drinking by mouth for as long as possible in terminally ill patients.

However, leading doctors are concerned that tube-feeding is being inappropriately used in dying patients, including those with advanced dementia; one expert described the procedure as often “unnecessary, unethical and dubious” because it did not prolong life and, due to higher risk of infection, may even shorten it.

Alzheimer Scotland response:

Part 5 (Medical Treatment and Research) of the Adults With Incapacity Act (2000) clearly states that any medical treatment undertaken must be for the benefit of the person being treated and should involve the least restrictive intervention necessary. This should preclude a care home in Scotland insisting on tube feeding before a new resident is admitted (which was one of the key concerns of the report regarding care homes in England). Both clinical staff and care home staff must have regard for the wishes, past and present, of the person with dementia, as far as they can be ascertained, and consult with family and others close to the person as far as possible. Best practice in end of life palliative care must be applied under the clinical guidance of a palliative care specialist.

It is vital that both care home and clinical staff receive appropriate dementia training to help them understand and manage the difficulties associated with feeding in the later stages of the illness and that the necessary time is given to allow nourishment to be given by mouth. If a family member is concerned that tube feeding is being used unnecessarily then we advise that they seek a second medical opinion, which the Adults with Incapacity Act entitles them to do, or contact the Mental Welfare Commission or Care Commission.

- Jan Killeen, Director of Policy, Alzheimer Scotland

The report found that there was no standard system for the care of people with dementia attending NHS A&E. This is compounded by a lack of knowledge about the disease which is hampering appropriate treatment being given for the illness or accident that brought the person into A&E.

The report recommends:

• an urgent, physical and psychological assessment for all older people with apparent confusion in A&E to be undertaken in order to assist with diagnosis and where possible identify whether the person may have dementia.
• all staff in A&E trained in how to care for people with dementia once identified.
• a “flag” system to raise awareness of the need for care as the patient moves through the system and meets dozens of new faces.
• health and social services to work together to prevent admission in the first place e.g. implementation of measures for fall prevention, and to manage care in the community which should include rapid access to diagnostic testing and consultant services if necessary.
• environmental and staff attitude changes to reduce unnecessary medication and interventions to people with dementia in general hospitals. A dementia trained nurse attached to every hospital would facilitate this.
• doing everything possible to reduce the multiples moves and interactions with staff that are so distressing and harmful to people with dementia.

Full Report and recommendations: People with dementia in NHS Accident & Emergency

Cross Party Group on Alzheimer’s disease (Link to Scottish Parliament website)

Photo (L-R): Jean Burnard (carer), Jim Jackson (Chief Executive), Shona Robison (Minister for Public Health), Lindsay Kinnaird (Policy & Research Officer and author of the ‘Meeting our needs?’ report) and Kate Fearnley (Health & Community Care Director) launch the new report in Glasgow, yesterday.

Insufficient provision and inappropriate services, lack of understanding (and sometimes fear) of dementia amongst care workers and a tightening of eligibility thresholds for community care services: just some of the problems highlighted in Alzheimer Scotland’s brand new report Meeting our needs? – the level and quality of dementia support services in Scotland.

The report was launched yesterday at Alzheimer Scotland’s ‘Going for Gold’ conference, which was also attended by Shona Robison, Minister for Public Health. The conference showcased examples of best practice in service provision – not only in Scotland, but from as far afield as Australia.

Shona Robison said,

I will carefully consider the report and its recommendations.Shona Robison (Minister for Public Health)

It is vital that in addition to improving the service we provide today, we also continue to develop better services in years to come. Our new Standards for Integrated Care Pathways for dementia lay down the first nationally-agreed benchmarks on social and healthcare management for dementia patients, and with Scottish Government funding and support the Scottish Clinical Research Network is establishing the infrastructure for a Dementia Research Network.
I welcome the shared purpose and direction between Alzheimer Scotland’s Meeting our needs? report and the Scottish Government’s own actions and priorities. I will carefully consider the report and its recommendations.
Shona Robison

Jim Jackson, Chief Executive of Alzheimer Scotland, said,

…people with dementia and their carers in Scotland deserve nothing but the best.Jim Jackson

Achieving the ‘gold standard’ for dementia support and care services should be more than an aspiration – people with dementia and their carers in Scotland deserve nothing but the best. However, our Meeting our needs? report highlights a vital need for action to redress deficiencies in dementia support services across Scotland: service provision is inconsistent and often not of a sufficient level or quality to effectively support people with dementia and their carers.
Jim Jackson

The programme has identified the need for changes in service provision for people with dementia across Scotland, including the integration of palliative care as promoted by Alzheimer Scotland’s Beyond Barriers project. It also recognises the need to enhance the research into dementia, its causes and potential treatments; a need that has received much attention following the recent comments of Terry Pratchett. Awareness raising and information sharing will be promoted, increasing the understanding of dementia across Scotland. All this gievs substance to the Scottish Government’s commitment to making dementia a national priority.

In addition, the announcement of joint funding of £600,000 (over three years) between Alzheimer Scotland and the Dementia Services Development Centre in Stirling will allow the organisation to carry out invaluable work on post-diagnostic support and information initiatives for people with dementia and their carers.

Jim Jackson, Chief Executive at Alzheimer Scotland, said,

This is an important start to work which needs to be done by the Government, NHS, local authorities, voluntary and private sector services. As more people are diagnosed, Scotland will need to be better prepared to provide personalised support for people with dementia. We look forward to working with our partners in the Dementia Forum and transforming dementia services in Scotland.

Jim Jackson