Alzheimer s Society Response Consultation on the Mental Health (Independent Mental Health Advocates) (Wales) Regulations 2011 13 May 2011 Consultation Response
Consultation on the IMHA Regulations Alzheimer s Society welcome the opportunity to comment on these regulations. People with dementia over 65 years of age use up to one quarter of hospital beds at any one time, and will be a significant group who benefit from the extended access to Independent Mental Health Advocacy. We have not answered all of the specific questions raised by the consultation document, as some of these are outside the expertise of Alzheimer s Society. However, we have raised a number of key issues that we believe should be considered. In Wales, the Health Minister has identified dementia as an area for action. The Welsh Assembly Government have launched a National Dementia Vision for Wales and published four Dementia Action Plans. These included an objective to promote access to existing advocacy services for people with dementia and their carers within the voluntary and independent sectors. Extending access to Independent Mental Health Advocates will be a key part of improving outcomes for people with dementia, and will support delivery of the Dementia Action Plans. 1. About Alzheimer s Society Alzheimer's Society is the UK's leading support services and research charity for people with dementia and those who care for them. It works across England, Wales and Northern Ireland. The Society provides information and support for people with all forms of dementia and those who care for them through its publications, dementia helplines and local services. It runs quality care services, funds research, advises professionals and campaigns for improved health and social care and greater public awareness and understanding of dementia. 2. About dementia Dementia is a severe, irreversible condition caused by diseases that attack the brain. The most common cause of dementia is Alzheimer s disease. Other causes include vascular dementia (strokes), Lewy body dementia and damage to the frontal lobe of the brain. The impact of dementia is profound. Every person with dementia experiences their condition differently but common symptoms include confusion, memory problems and hallucinations, mood changes and feelings of anger and anxiety about what is happening to them. There are over 42,000 people with dementia in Wales and this is forecast to increase to 56,000 by 2021. 1 One in three people over 65 will end their lives with a form of dementia. 2 1 Tesco, Alzheimer s Society and Alzheimer s Scotland (2011) Mapping the Dementia Gap
Only 36% of people living with dementia in Wales have a diagnosis of dementia 3 Dementia currently costs the UK 20 billion per annum. This is an average of 25,472 per person with late onset dementia. By 2018 dementia will cost the UK 27 billion per annum if nothing is done to improve the costeffectiveness of dementia services. 4 People with dementia over 65 years of age are currently using up to one quarter of hospital beds at any one time. 5 Supporting people with dementia to leave hospital one week sooner than they currently do could result in savings of at least 80 million a year 6 28% of people with dementia and carers who responded to an all-wales survey conducted by Alzheimer s Society identified advocacy as a service that they felt they could benefit from 7 3. General comments 3.1 Diagnosis of dementia For people with dementia to benefit from extended access to Independent Mental Health Advocates (IMHAs) they must have a diagnosis and the diagnosis must have been communicated to staff. However, only 36% of people living with dementia in Wales have a diagnosis of dementia. 8 Without a diagnosis, people with dementia will not meet the requirement for accessing IMHA. Similarly, even when a person has a diagnosis of dementia, it may not be communicated to staff if they are admitted to a general hospital ward with a separate health problem. The primary cause of admission to hospital for people with dementia is a physical health issue, rather than dementia itself. 9 When this is the case, people with dementia are often admitted to general hospital wards, where their dementia may be overlooked because staff are not trained or do not understand the signs and symptoms of dementia. We note evidence submitted to the Inquiry Panel for the Older People s Commissioner for Wales first review (2011) 10, which found that in one hospital the inquiry panel visited, they were told that cognitively impaired 2 Brayne, C, Gao, L, Dewey, M, Matthews, FE, Medical Research Council Cognitive Function and Ageing Study Investigators (2006). Dementia before Death in Ageing Societies- the Promise of Prevention and Reality. PloS Med 3(10). 3 Tesco, Alzheimer s Society and Alzheimer s Scotland (2011) Mapping the Dementia Gap 4 Alzheimer s Society (2007) Dementia UK, a report to the Alzheimer s Society by King s College London and the London School of Economics. Alzheimer s Society: London and The King s Fund (2008) Paying the Price: the cost of mental health care in England. King s Fund: London. 5 Ibid. 6 Alzheimer s Society (2009) Counting the cost: caring for people with dementia on hospital wards. Alzheimer s Society: London. 7 Alzheimer s Society (2010) People and Places survey. Unpublished. 8 Tesco, Alzheimer s Society and Alzheimer s Scotland (2011) Mapping the Dementia Gap 9 Ibid 10 Older People s Commissioner for Wales (2011) Dignified Care? The experiences of older people in hospital in Wales.
patients who are admitted get distributed all over the hospital and do not get a cognitive assessment in the emergency department. Alzheimer s Society would recommend use of the This is Me leaflet 11 as a tool to improve communication of a diagnosis of dementia and give staff the information they need to provide person-centred care. There needs to be further work to improve diagnosis rates in hospitals and the communication of a diagnosis of dementia within hospitals. This is an area that the Welsh Assembly Government are addressing through the Dementia Action Plans, but the implementation of these regulations must also reflect this. This will be key to successful implementation of the Mental Health Measure regulations for people with dementia. 3.2 Awareness of the regulations We are concerned that for people with dementia to benefit, there must be work to raise awareness of the regulations within hospitals. An evaluation of an advocacy service provided by Alzheimer s Society revealed that a number of issues referred to the advocate related to clients medical problems that are supplementary to their known diagnosis of dementia. However, all these clients were already known to the advocate. There was no evidence of anyone having been admitted to hospital for a medical problem, subsequently being diagnosed as having dementia and then being referred to the advocate as a new client. 12 This may suggest a low awareness among staff of how people with dementia might access and benefit from advocacy services. To ensure the success of these regulations there must be significant work to raise the awareness of staff on hospital wards of the entitlement to access an IMHA, and how this will benefit people with dementia. 4. Consultation questions Q1. Do you agree that Local Health Boards should be responsible for making arrangements for independent mental health advocacy? If not, who do you think ought to be given this responsibility, and what are the reasons for your views? It is crucial that there are safeguards in place to ensure the independence of IMHAs. The Advocacy Counts 3 report (2011) 13 has stressed the importance of the independence of advocates, in the feedback they received, such as: Very important to be independent from statutory services because there is no conflict of interest then If we weren t independent it would be like trying to work with our hands tied behind our backs There are concerns about funding from local authorities because of implications on independence ie if making a complaint it could be seen to be biting the hand that feeds you 11 See http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentid=1290 12 Tope, R, (2010), An evaluation of the Alzheimer s Society Monmouthshire Advocacy Project. Unpublished. 13 Age Cymru and Older People s Commissioner for Wales (2011) Advocacy Counts 3 the third report on advocacy provision for older people in Wales.
If LHBs make the arrangements for independent mental health advocacy, there may be concerns that the independence of these services are compromised. We recognise that this might also remain an issue with alternative arrangements for example, if local authorities or if the Welsh Assembly Government itself had this responsibility. It is crucial that there are clear safeguards to assure the independence of IMHAs, and that these are communicated to people with dementia to ensure that there is confidence in the advocacy service provided. Q3. Are the appointment requirements set out in Regulation 4 sufficiently robust? Should further requirements be made? As stressed in our response to the earlier consultation on the Mental Health (Wales) Measure, it is key that those providing advocacy services for people with dementia have appropriate specialist knowledge and training in dementia. For example, people with dementia have unique communication needs due to the impairment in capacity brought by dementia. Those acting as their advocates will need to understand effective ways of gaining their views and representing them. The Society believes that there is significant opportunity for our services to work closely with Local Health Boards and other organisations to ensure people with dementia have access to mental health advocacy services and that staff in those services are appropriately trained. We would be happy to discuss this further. We would also recommend that any Code of Practice issued encourages those advocates who work with people with dementia to join the Dementia Advocacy Network, participate in the training they offer and access support from others working with the same sensitive issues. 14 We hope that these comments have been helpful. Please do not hesitate to contact us if you have any further questions. Yours sincerely, Tess Saunders Policy Officer T. 029 2048 0482 E. tess.saunders@alzheimers.org.uk 14 See http://dan.advocacyplus.org.uk/pages/who-we-are.html