August 2010

Dear Mr. Chapman

Re:  DHSSPS: Improving Dementia Services in Northern Ireland- A regional Strategy

 Law Centre (NI) is a public interest law non-governmental organisation. We work to promote social justice and provide specialist legal services to advice giving organisations and disadvantaged individuals through our advice line and our casework services from our two regional offices in Northern Ireland. It provides a specialist legal service (advice, representation, training, information and policy comment) in five areas of law: community care, mental health, social security, immigration, and employment. Law Centre services are provided to over 450 members in Northern Ireland.

We welcome this Strategy as a positive development in recognising the individual needs of people with dementia and their carers. The Strategy provides an opportunity to ensure that people with dementia and carers have access to the information, care and support that they need.

Below we address only some of the questions that were posed for consultation.

Do you agree with the proposed actions in relation to preventions?

The Strategy states that ‘since the evidence is not strong in relation to prevention, it is not appropriate at this stage to develop large scale education strategies for the general public regarding prevention of dementia.’[1]  Early diagnosis, however, requires greater awareness of dementia and how it progresses and this in turn, requires greater public understanding of the condition.  The Scottish Dementia Strategy notes that admission to hospital for a physical ailment may be the first opportunity to discover dementia and for specialist services to be available accordingly.[2]  It is important therefore to guard against any assumption that since those at risk of dementia are already under the care of their GP for other conditions the condition will be readily diagnosed. 

Is the Staged Model a best Practice basis for future services development?

The Staged Response Model appears to provide a detailed analysis of the needs of people with dementia and how to develop future services.  Services should reflect the progressive nature of the illness and the increasing dependency of people with dementia. We welcome the holistic approach outlined in this section and the focus on the promotion of awareness of dementia, early recognition, assessment, treatment, care and support.  From our casework experience, we have observed in some instances, a limited amount of post-diagnosis support services for people with dementia, other than the prescribing of medication which has, in some cases, led to early discharge from hospital.  We welcome an approach that focuses on timely discharge from hospital to appropriate community settings with care plans in place.

Has the Strategy identified appropriate methods or means to raise awareness of dementia?

The Strategy identifies a range of options to raise awareness of dementia.  The Alzheimer’s Society NI has stressed the need for a real appraisal of the experience of people living with dementia in order to raise awareness of dementia and we echo this recommendation. Stigma is generally associated with dementia and often results in people feeling isolated and socially excluded. We support the measures outlined in the Strategy to tackle the obstacle of stigma.

It is difficult to separate public awareness around dementia care from awareness concerning end of life care.  The Department consulted earlier this year on palliative care and end of life services (‘Living Matters: Dying Matters ‘A Palliative and End of Life Care Strategy for Adults in Northern Ireland’ ) and we welcome the inclusion of palliative and end of life services for people with dementia within the framework of the Palliative and End of Care Strategy.  

Staff training is a fundamental issue and the health and social care workforce needs to be appropriately trained in dementia care skills to ensure consistent and high quality care for people with dementia.  Without the necessary training care workers and nursing staff may be unable to recognize that apparently ‘challenging behavior’ may in fact be the result of an undiagnosed underlying illness. Patients, for example, in a nursing home could be at risk of being moved from an environment in which they are comfortable and happy due a lack of staff specialist training in the onset of dementia. We support the proposal for enhanced training and commitment of staff and an agreed approach to commissioning standards for the provision of care in this sector.

Do you agree that the key services issues facing people with their families have been identified?

The Strategy provides a good overview of the key services issues facing people with dementia. Further consideration, however, should be given to the needs of people with onset of dementia, younger people with dementia and those with a learning disability, to ensure that these individuals are not marginalized within the health and social care system because they form such a small proportion of the overall numbers of people with dementia.  We are concerned that black and minorities ethnic groups (BMEs) have not been mentioned in this consultation and would like to draw attention to their inclusion within the strategy. The Alzheimer’s Society GB has identified that an estimated 11,000 people from black and ethnic groups suffer with dementia. Of this figure approximately 6.1% are young onset cases compared to 2.2% of the UK population as a whole, indicating the younger age profile of BME groups.[3]

Are the proposed actions to support carers acceptable?

Carers perform a major role in supporting people with dementia. The capacity of carers to support people living with dementia also has a significant impact on the level of support and care required by other external care providers. The well being of a carer and a person with dementia are integrally linked and, therefore, failure to provide adequate support and services to carers will have a significant impact on the quality of life of a person with dementia.

Although the actions outlined in the Strategy are commendable, considerable work will need to be done cross-departmentally to ensure that carers are aware of the support and resources available to them. For example, estimates from 2005 indicate that carers in Northern Ireland are missing out on £4 million in unclaimed benefits.[4]

Furthermore, we have seen a lack of uptake of carers’ assessments generally in Northern Ireland[5]. The introduction of the carers’ assessment with the Northern Ireland Single Assessment Tool arrangements, though an important step, will need to be supported with staff training and public information to ensure carers are made aware of their rights.

Do you agree that the proposed new capacity legislation will provide appropriate powers and protections for people with dementia and their families?

We acknowledge that there is certainly scope for the new mental capacity legislation to provide powers and protections for people with dementia and their families in the final details of the policy proposals for the Bill.  There are, however, inconsistencies arising between the Strategy and the recently published Equality Impact Assessment on the Bill (July 2010).

Section 12.5 of the Strategy, for example, states ‘advance decisions and lasting powers of attorney are particularly important in respect of those with dementia as they envisage situations where the person while retaining capacity makes their own arrangements for future decision making for a time when that capacity is lost’. This statement does not correlate to the Mental Capacity (Health, Welfare and Finance) Bill EQIA also currently out for consultation by DHSSPS which does not refer to advance decisions but to advance statements. Paragraph 21 of the EQIA states ‘The Bill will therefore provide for advance statements which will set out the preferences of a person with mental capacity on future treatment and care and for the management of financial affairs.  The Department proposes that advance statements will not be legally binding.’  We would welcome further clarification on this issue.

Furthermore, Section 12.7 of the Strategy maintains that the ‘single Bill will provide a right of independent advocacy to those affected by the legislation.  A key function of the advocate will be to ascertain the views of the affected person and ensure decision makers are aware of their views’. In contrast, the Mental Capacity (Health, Welfare and Finance) Bill EQIA remains unclear as to the degree of advocacy that will be provided.

We would strongly recommend that these discrepancies are addressed and remedied before any further consultation or action can be taken on the matter.

Do you agree that the proposed actions in these sections are appropriate and achievable?

The proposed actions are appropriate and welcome.  They will, however, only be achievable if sufficient resources are allocated to support the Strategy.

Law Centre (NI) welcomes the opportunity to response to the consultation. We trust you will find our comments helpful. If there is any further way in which we could contribute to this process we would welcome the opportunity to do so.

Yours sincerely,

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Georgina Ryan White, Policy Officer