Policy responses and statements
Background: The Department of Health is developing a national strategy for dementia services. This consultation drew on evidence from a wide range of reports and stakeholders, a series of listening events involving over 3,000 people and the recommendations of an External Reference Group. It invited everyone to give their views on the ideas set out in the document, as well as contribute new ideas to the debate. The aim is to ensure significant improvements across 3 key areas in relation to dementia services:
The document was intended to help people contribute to the consultation by summarising, using best evidence, outlining the priorities for change that have been identified and setting out what kinds of interventions and models of care might help to bring this about. The DoH framed the proposals for consultation around the outcomes - and therefore the service models - that, based on best evidence, it thinks will enable the Department to reach its 5 year goal of significant improvements in the care and support available for people with dementia. This document contains suggestions on which comments are sought from the public, from those affected by dementia, and from those commissioning and providing services of all kinds. COMMENTS ONDEPARTMENT OF HEALTHTRANSFORMING THE QUALITY OF DEMENTIA CARE: CONSULTATION ON A NATIONAL DEMENTIA STRATEGY
The Royal College of Physicians of Edinburgh is pleased to respond to the Department of Health on its paper on Transforming the quality of dementia care: consultation on a National Dementia Strategy. There can be no doubt of the importance of dementia as a disease with devastating personal, social, physical and economic consequences. The strategy suggests that there are 570,000 sufferers in England alone, with the number set to double as the population ages further. Although the majority of medical interactions are within primary care and psychiatry, the disease impacts heavily on the work of RCPE Fellows and Members in hospitals where patients with dementia may occupy up to 30% of medical hospital beds. These patients have longer hospital stays, are more likely to develop iatrogenic disease and can cause additional difficulties because of behavioural problems. Improvement of services for people with dementia is therefore of direct relevance to Fellows and Members of the College. All of the Fellows consulted agreed that this strategy should be welcomed, and that the Department of Health should be thanked for looking at this important area. The working party is to be commended on its work. The structure of the consultation has been helpful in dealing with a complex issue, and the views of most stakeholders have been heard. The scope might have been widened to include a section on end-of-life care and associated planning. Improving awarenessRecommendations 1 & 2 The aims are clearly appropriate. The means are only described in general terms and there are no realistic attempts made to estimate the financial and professional cost of achieving the aims. Without new funding such ambitious aims could deplete other health and social care resources. It is critical that dementia care is part of training in medicine, nursing and professionals allied to medicine so that all health professionals have a basic understanding of the issues. Further training will need to be provided in specific specialty areas, and the Colleges will have a role here with regard to the training curriculum. Early Diagnosis and InterventionRecommendation 3 Early diagnosis and intervention are agreed good practice. Delay in diagnosis is one of the most frequent complaints because of non-recognition of symptoms or reluctance to make a formal diagnosis. The proposal to establish specialist assessment services is welcome. Unfortunately, the costs are not estimated and the likelihood of being able to set up universal services to achieve these aims is not discussed in practical terms. For example, would it be possible to attract, train, recruit and retain such a workforce (consultants, psychologists, specialist nurses etc) on a scale to deliver the stated vision? It is not acknowledged that a substantial number of patients with dementia have their diagnosis made for the first time when they present to acute general hospitals with physical illness or acute decompensation of their mental function. A good starting point for improving diagnostic accuracy could be centred on acute care. The strategy correctly highlights the need for all adult services to be dementia aware and skilled in caring for such individuals. Even earlier in the patient pathway, warning signs could be detected at routine GP/Nurse contacts, and MMSE screening could be considered. Within the consultation, a “specialist” is not properly defined. If it means an old-age psychiatrist there will be a major shortfall of people to do the work. The role of other staff, particularly geriatricians or GPs with a special interest in dementia, should be considered. There did seem to be varied views about this from our Geriatrician Fellows, and we would suggest that the response of the British Geriatrics Society be consulted on this point. Recommendation 4 Organisations such as the Alzheimer's Society provide excellent quality assured information. One other source of information that is not mentioned is the recent information prescription pilot scheme by the Department of Health, which was started in January 2007. Several of the 20 pilot sites did address the area of dementia and it would be worth looking at what solutions they found for providing timely, and sensitively given, information. The other point that might be worth considering here is that, since April 2004, patients have had a right to have a copy of any correspondence between healthcare professionals about them. One of the areas where this has proved difficult, but not impossible, is in those people with dementia. As long as the information has been shared with the individuals and their carers within the clinical contact relating to the correspondence, this should not be a major issue. Recommendation 5 Our Fellows are generally supportive of the concept of a dementia care adviser, both as a point of contact for patients and carers, but also general staff involved in the care of dementia sufferers. There have been some examples of joint appointments between Alzheimer’s charities and health boards in Scotland and research information on the success of these posts would be helpful to the consultation. Recommendation 6 The emphasis that dementia sufferers are users of all adult services and therefore must be appropriately accommodated is welcome. Government regulations on environmental standards for new-build hospitals do not include adaptations for those with dementia (signage, sight lines, colour differentials etc), although other disabilities are better acknowledged. Hospitals should also receive greater financial support through Payment by Results (PbR) or other means for treating people with co-morbid dementia. Dementia often results in longer lengths of stay and slower recovery from other illnesses. The current system does not sufficiently reflect this and therefore results in pressure to discharge such patients inappropriately early, and thus tends to increase institutionalisation rates. As suggested in the report, it does make sense to identify a senior clinician to be the lead for quality and improvement in dementia within each hospital and to develop a specific care pathway for people with dementia in hospital, as well as commissioning specialist older people's mental health liaison teams to work within the hospital. The patient may end up on psychiatry of old age wards, elderly care wards, or general medical wards dependent, among other things, on bed availability, and it is very important that wherever they end up they have access to high quality care. Specialist units for those with challenging behaviour, jointly staffed by mental health and general medical staff, should be considered for most general hospitals of adequate size. (An example of such a unit can be found in Gateshead.) It is only by working together in this way that we will be able to make significant improvements to the patient pathway through the acute hospital. Recommendation 7 To ensure that patients and their families receive high quality care requires a number of things to be put into place. There is a need to ensure that all the population have some understanding of the condition. For home carers as part of the social workers’ package of care there is a need for greater understanding together with the chance to work with the patient in their own home. Therefore the carer’s duties should be extended into providing some form of therapeutic help for the patient. Finally, there is a need to augment community mental health teams, perhaps ensuring that one member of the team is specifically tasked to provide reviews of patients with dementia, post discharge/diagnosis/early review before handing over to the dementia care adviser. Recommendation 8 Respite care is a very important part of the policy. This needs to be built into the system and become more 'accepted practice' to decrease the guilt that a lot of carers feel. The term 'personal budgets' is used several times but it is not made clear exactly what this means. Will the families be given the money to spend in a way that they feel is appropriate? Recommendation 9 Joint commissioning strategies for dementia should be used and these should involve Secondary Care services, thereby encouraging appropriate policies and procedures. Clearer information on the delivery on the National Dementia Strategy will present challenges. The Strategy will be implemented to different degrees and at different rates unless clear standards with timescales are set at every stage. Effective support for the Strategy is unlikely unless it is implemented through Primary Care Commissioning. This, in turn, requires strong Government leadership in setting national priorities. Recommendation 10 The document argues that intermediate care can work well for dementia, but experience suggests that patients with cognitive problems do not respond very well to rehabilitation if they are unable to retain information for long enough. More research in this area should be welcomed. The issue of end-of-life care should be considered here as intermediate care facilities could do much, in tandem with primary care and the palliative care services, to support patients and their families, maintaining dignity and a sense of control over therapeutic decisions. Recommendation 11 & 12 Raising awareness and providing training for care home staff are key issues. Registration arrangements for care homes must be reviewed and the concept of the generic care home developed. One of our Fellows expanded on this point as follows: “The report comments that ‘some general hospitals work hard not to make the diagnosis of dementia’. This is entirely understandable under the current system; should a person need discharge to a care home or Intermediate Care Services, the diagnosis of dementia can be a bar to access and cause delays. Under the current registration system operated and monitored by the Commission for Social Care Inspection (CSCI), homes are required to have specific registration for those with dementia, even though a very high proportion of all residential and nursing home residents suffer from this condition. A new diagnosis of dementia therefore sometimes results in homes refusing to admit such patients even when there are no specific elderly mentally impairment (EMI) needs such as behavioural disturbance or aggression. In other cases we find that Social Workers insist on unnecessary repeat assessments by psychiatry services, again delaying discharge. This problem has been addressed in the British Geriatric Society documents 4.13 ‘Hospital discharge of older people with cognitive impairment to care homes’ and 3.4 ‘Collaboration between Geriatricians and Psychiatrists of Old Age, a joint policy statement by the BGS and the Royal College of Psychiatrists’. DoH support and a national policy would be helpful”. Recommendation 13 No specific comments. Recommendation 14 There is no mention of the relevant topic-specific research network, DeNDRoN, which covers dementia and other neurodegenerative diseases. There is a national clinical studies group that has been set up in relation to dementia and this will be the obvious group to take forward this part of the initiative. Recommendation 15 Agreed.
Copies of this response are available from: Lesley Lockhart, Tel: 0131 225 7324 ext 608 [10 September 2008]
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