Commons committee blasts dementia discrimination

On 10 April 2005 the House of Commons Health Select Committee published a damning report about the government’s policy on fully funded NHS continuing care.

The report dramatically highlights the incoherence and discrimination of the government’s policy on assessing people with dementia for NHS continuing care and supports repeated calls made by the Alzheimer’s Society and other charities for the introduction of national criteria and a standard method of assessment, backed up by a national training programme.

The Alzheimer’s Society gave evidence to the Committee using the experience which people with dementia and carers have told us about. In the evidence session MPs mentioned having spoken to people affected by dementia at the Alzheimer’s Society Parliamentary lobby on 16 March.

The report demands a fresh rethink about the artificial barrier between health and social care which means that people with dementia are charged for care. The report states:

… people who in the past would have been cared for in NHS long stay wards and now often accommodated in nursing homes. This means that responsibility for funding long term care has to a major extent been shunted from the NHS to local authorities and individual patients and their families.

Debates about where the boundary between health and social care should be drawn have been complicated by further debates around the definitions of ‘personal care’ and ‘nursing care’, and have lead to the absurd position where carers providing complex medical support for their loved ones are denied fully funded continuing care home because they are not registered nurses.

Our evidence indicates that current eligibility criteria for NHS continuing care are heavily weighted towards physical needs, to the detriment of mental health and psychological needs. It strikes us as perverse that, under the current criteria, in the case of Alzheimer's disease the further a person’s illness progresses, the less likely they are to qualify for continuing care funding, even though they in fact the need more intensive health care to maintain a good quality of life.

… we dispute the Minister's argument that funding personal care would be financially unsustainable… we maintain that with political will, the resources could be found to fund free personal care.

The committee also lambasted the government for suggesting that cases such as that of Alzheimer’s Society members Barbara and Malcolm Pointon show that the system works:

The Pointon case is a helpful example, but not, as the Minister implied, of the continuing care criteria working effectively to take account of the needs of those with dementia, but rather of the reverse. Barbara Pointon only succeeded in securing continuing care funding for her husband, who suffers from Alzheimer’s, after a lengthy battle which culminated in her taking her case to the Ombudsman.’

‘The Alzheimer’s Society strongly welcomes the report issued by the Health Select Committee, which highlights the discrimination faced by people with dementia. The Society frequently hears from carers of people in the late stages of dementia who cannot move or communicate, are doubly incontinent and are also experiencing panic attacks, and hallucinations. Yet these people are being told that they are not entitled to NHS continuing care because the criteria fails to recognise their mental health needs. The Society strongly support the Committee’s recommendation that mental health and psychological needs are given the same weight as physical needs.