Dementia

Baroness Wheeler Excerpts

Thursday 18th January 2024 Grand Committee

[Baroness Wheeler (Lab)]

My Lords, I thank the noble Baroness, Lady Browning, for this debate and for giving us the valuable—if nowhere near long enough —opportunity to shine a spotlight on many key issues that were at the heart of the scrutiny of the social care cap provisions of the Health and Care Act. In particular, I note its impact on people with dementia and our concerns about how NHS continuing healthcare operates arbitrarily with regard to people receiving free care or having to pay for it themselves, as well as how we move towards genuine parity between the NHS and social care and how good social care is vital for people with dementia and their carers. The current social care system is just not set up to meet these needs.

I have three points. First, on carers, the 60% of people with dementia drawing on care at home are being cared for by their spouses and relatives—mostly unpaid carers, as my noble friend Lady Pitkeathley again reminded us. As a carer myself, I meet many unpaid carers locally who are daily, for 24 hours, looking after loved ones at various stages of dementia, most of them with breaks of only a few hours a day or a week. The carer role is often rewarding, but it is also relentless for many. We urgently need a comprehensive national carers strategy, and I look forward to the Minister’s explanation of why we do not have one.

I turn, secondly, to care costs and the devastating impact of the financial costs for those living with dementia and their families—an average of £100,000 is spent by individuals over their lifetimes. Despite extensive modelling at the time of the 2022 Act showing that just 19% of people with dementia would reach the care cap, and despite the disproportionately detrimental impact on dementia sufferers in some of the poorest parts of the country, it would have made a start as part of a wider package of reforms that Labour argued for. Instead, the new reform money has been allocated largely to propping up the existing social care system. What action are the Government taking to tackle the staggering care costs faced by individuals with dementia in the absence of the care cap implementation? Can we please be updated on the Government’s plans for social care charging reform?

Thirdly, on NHS continuing care, the excellent Lords Library briefing reminds us of the CHC’s ill-defined primary health need assessment criteria and the huge inequities in the current system, particularly relating to the funding—or lack of funding—for care costs for dementia, either in the home or in care homes. The Alzheimer’s Society has pointed out that NHS England’s stats do not record diagnostic details, so there is no way of knowing how many people with dementia receive CHC or have been turned down. There is also no way of making assessments or comparisons from which transparent criteria could be developed. There are also huge geographical variations in the length of time taken to assess claims and handle appeals. Can the Minister update the House on what work is being undertaken to improve the transparency of CHC processes, procedures and decision-making, and also to address the urgent problem with assessing the eligibility for CHC of people with dementia?

Noble Lords’ priorities for dementia today have focused on urgent improvements to diagnostic rates, speeding up the introduction of vital modifying drugs to help slow down disease progression, investment in the dementia diagnostic infrastructure, and rebuilding the workforce and addressing the 152,000 vacancies in the adult social care workforce. This needs to be a fully comprehensive plan that is fully integrated with the NHS workforce plan if we are to avoid exacerbating the already chronic social care workforce crisis that we have.