Improving Dementia Services in England - an Interim Report - Public Accounts Committee Contents

1  Understanding and responding to the scale and urgency of dementia

1.  'Dementia' describes a range of progressive, terminal brain diseases, affecting an estimated 600,000 people in England. Age is the main risk factor and people with dementia need a complex mix of health and social care services. People with dementia require a complex mix of health and social care which transcends all organisational boundaries. The number of people with dementia in England is expected to double within 30 years and estimated total costs are expected to increase from £15.9 billion in 2009 to £34.8 billion by 2026.[3] Most adults know someone who has dementia but the full scale and extent of the problem is poorly understood.

2.  In our 2007 report we identified there were parallels between attitudes towards dementia now and cancer in the 1950s, when there were few treatments and patients were commonly not told the diagnosis for fear of distress. There are also stigmas associated with mental health and older people's issues, which present barriers to improving awareness, understanding and openness about dementia. To date little has changed and indeed dementia is one of the very few illnesses that people rate as worse than death. Dementia is perceived as a worse illness to have than cancer, and it is the fact that people do not talk about it because of this stigma that has impeded change.[4]

3.  The total estimated direct cost of dementia in 2009 was £10.1 billion (Figure 1), £1.93 billion of which was borne by private individuals paying for care homes, with the remaining £8.2 billion a direct cost to the NHS and social care budgets. The bulk of the direct cost related to provision of care in care homes.[5] Over the next two years, the NHS will receive 'flat real' funding, that is the same level of funding received the previous year plus some extra for inflation.[6] However demand, pay and expectations continue to rise and with recent legal rulings on eligibility for Continuing Care funding in favour of the claimants, there will be huge cost pressure on the NHS.[7] Indeed the Department estimate that the overall cost of implementing the new National Framework for Continuing Healthcare and NHS funded Nursing Care in England in 2007 was £219 million. Significant costs pressures have also been seen with regard to local authority funding.[8]

4.  The NAO's initial report, Improving Dementia Services in England (July 2007), found that dementia presented a significant and urgent challenge to health and social care in terms of numbers affected and cost, but little priority had ever been attached to it. Stigma attached to older people and mental health, combined with poor quality data and lack of effective joint working across health and social care meant that services were not delivering value for money to the taxpayer or to people with dementia and their families. In particular, the report found that spending was late, with too few people being diagnosed or being diagnosed early enough. Early interventions that were known to be cost-effective, and which would improve quality of life, were not being made widely available. This resulted in spending at a later stage on necessarily more expensive services.[9]

Figure 1: Total estimated direct costs of dementia in 2009

Source: C&AG's report (2010), adapted from Knapp et al (2007) Dementia UK and the King's Fund (2008) Paying the Price

5.  At our previous hearing in 2007, the Department announced that dementia would now be a national priority and that it would signal this to the NHS through the NHS Operating Framework. It also announced that it would develop a National Dementia Strategy.[10] This five-year Strategy was launched in February 2009. The Department acknowledged that dementia was the biggest challenge it had ever faced, largely due to the complexities of joining up health and social care departments and resources.[11]

6.  However, despite agreeing in 2007 that dementia would be a national priority as important as cancer and stroke, the Department did not include it in the December 2007 Operating Framework in which stroke and cancer were listed as national 'Tier 1' indicators (Figure 2). Since then, two further NHS Operating Frameworks have been published but dementia has still not been included as a national priority. Rather it is mentioned as something Primary Care Trusts (PCTs) may wish to consider taking action on. One of the key outcomes of this failure to afford dementia the priority status that we were led to believe it would be given, was that progress in improving dementia services was not performance-managed by the Department or Strategic Health Authorities.[12]

7.  In publishing the Strategy, the Department announced that it was allocating £150 million revenue funding to PCTs over the first two years of the Strategy to assist with implementation.[13] Although the Department stated that this funding was to help PCTs implement the National Dementia Strategy, PCTs were completely free to decide how to spend it.[14] It was unclear how the first year's funding of £60 million had been spent, or indeed if it had actually been spent on dementia. The Department only commenced commissioning a local audit of the costs of dementia services in each PCT in December 2009,[15] and the results will not be available for several months. Each PCT was also required to complete a baseline review of services by March 2010, as set out in the revised Implementation Plan (July 2009).[16] This could have been undertaken as part of the Strategy's development, but instead the initiative was launched in July 2009 and was not expected to be completed until over a year after the Strategy's launch.

Figure 2: The NHS Operating Framework: Vital Signs Indicator Set
Tier 1: A small number of 'must-dos', which apply to all PCTs

These are subject to performance management from the Department centrally. SHAs hold PCTs and NHS Trusts to account for these performance indicators and the Care Quality Commission assesses performance annually. Five Tier 1 indicators relate to cancer; two to hospital acquire infection; and one to stroke. Dementia is not mentioned.

Tier 2: National priorities for local delivery

The Department considers that concerted effort on these is required across the board but allows local organisations flexibility on how they deliver. SHAs hold PCTs and NHS Trusts to account for these performance indicators and the Care Quality Commission assesses performance annually. Dementia is not mentioned.

Tier 3: Priorities determined and set locally

These are a set of indicators from which PCTs can choose a small number to target local action and improvement effort. The Department does not performance manage these indicators, and the Care Quality Commission is not expected to include them in its annual assessments. SHAs need to be satisfied that PCTs have identified and are acting on a group of Tier 3 indicators. Learning disabilities has three specific Tier 3 indicators.

There are Tier 3 indicators relating to the timeliness of social care assessments and the proportion of carers receiving a 'carer's break' or other carer's service which link to dementia care, but dementia is not mentioned specifically.

Source: C&AG's Report (2010)

8.  Overall, the Department had estimated that the Strategy's implementation would cost some £1.9 billion over 10 years and that this would be funded largely through efficiency savings. These could be achieved by reducing the amount of time that people with dementia spend in hospital when they no longer have a medical need to be there, or by reducing premature entry to care homes by providing better support in the community. These savings could then be re-directed to other areas, such as early diagnosis and intervention in people's own homes.[17] Achieving the required £1.9 billion of efficiency savings will be a financial challenge on a scale the Department has never before attempted.[18] It is dependent on the widespread adoption of good practice and being able to release funding from the acute sector to other health and social care settings, which has historically been very difficult to achieve.[19]

9.  The Department explained how some prevention schemes had led to up to a 49% reduction in emergency admissions which had a considerable impact both on hospital costs and quality of care for patients.[20] People with dementia who were admitted to hospital could have a poor experience[21] because they were often not seen by a specialist in dementia. There are major gaps in the provision of specialist older people's mental health services such as multi-disciplinary psychiatric liaison teams. The presence of these specialist services could create an environment conducive to earlier discharge, or perhaps even prevent admission in the first place.[22] This evidence and other examples of good practice were outlined by the NAO in 2007 and could have been disseminated by the Department and adopted by PCTs much earlier.[23] Instead, the Department waited until it had developed and launched the Strategy before taking any action to disseminate good practice, resulting in a whole year being lost.[24]

3   C&AG's Report, para 1 Back

4   Qq 104 and 124; House of Commons, Sixth Report of Session 2007-08, Improving Services and Support for People with dementia, HC 228 Back

5   C&AG's Report, para 1.4 and Figure 4 Back

6   Qq 125 and 130 Back

7   Qq 78, 126 and 145 Back

8   Qq 130 and 131 Back

9   C&AG's Report, paras 34 and 35; Committee of Public Accounts, Sixth Report of Session 2007-08, Improving Services and Suport for People with Dementia, HC 228, para 23 Back

10   Qq 2, 3 and 4 Back

11   Q 157 Back

12   Qq 2, 4-8 and 23-29 Back

13   Qq 32 and 42 Back

14   C&AG's Report, para 15 Back

15   Qq 9-12, 42, 47-48 and 53; C&AG's Report, para 15 Back

16   Qq 39-40, 76, 78, 81, 131 and 155; C&AG's Report, para 15 Back

17   C&AG's Report, paras 7 and 8 Back

18   Qq 16, 18, and 127-128 Back

19   Q 17; C&AG's Report, para 8 Back

20   Q 40 Back

21   Q 73 Back

22   Q 82 Back

23   C&AG's Report, Session 2006-07, Improving Services and Support for People with Dementia, HC (2006-07) 604, paras 4.16-4.18 Back

24   Qq 34 and 35 Back

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