Our Voice in the First Dementia Strategy for Wales Nigel ... · Nigel Hullah, Chris Roberts & Jayne Goodrick. The background to our involvement in consultation for the first Dementia

Our Voice in the First Dementia Strategy for Wales

Nigel Hullah, Chris Roberts & Jayne Goodrick

The background to our involvement in consultation for the first Dementia Strategy for Wales

We have the right to be active participants and consultants in creating the dementia strategy for Wales (in line with the principles of the Social Services and Well-being (Wales) Act 2014

‘You will have more of a say in your care and make decisions in an equal partnership with professionals. Not only about your care and support –but in your contribution to shaping the care and support for others.’

The consultation : People living with dementia and their families were:• Recognised as having the right to be

active participants and consultants -The Welsh Government supported and resourced an engagement process.

• Alzheimer’s Society and DEEP worked in partnership to support and enable over 1,000 people to have a voice in Wales about the Wales Dementia Strategy.

• A 66 page report was produced providing written evidence and recommendations by people affected by dementia to inform the final draft of the strategy. (Copy can be emailed)

People’s priorities in Wales (recommended for inclusion or greater emphasis after first draft)• A key point of contact

• Support services throughout diagnostic pathway

• Rights awareness

• Peer support and user involvement

• Information and support hubs

• Carers and family recognised in own right

• Respite

• Inclusive dementia awareness

• Palliative and end of life care pathway

Agreed key priorities from first draft:

• Increase knowledge and awareness about dementia

• Health Boards to be consistent & evidence based to develop local pathways

• Specific actions to be developed by Health Boards to support diverse communities

• Health Board targets for training of front line staff

• Develop a team around the individual approach

• To examine a national approach to respite

What we are doing:• Contributed to the 10 dementia strategy

consultation events.

• Attending the Cross Party Dementia Committee Meeting.

• Presented evidence to the Health, Social and Sport Committee at the Welsh Assembly.

• Having individual meetings and consultations with Assembly Ministers.

• Encouraging and supporting the voices of other people living with dementia to participate and contribute through our presence at meetings, conferences, events and via social media

• Asking to be included as part of the implementation and quality control process

Our hopes for a RIGHTS based Strategy

‘We want to see an improved situation. We are starting to talk about their rights and to have higher expectations about what it means to live well with dementia. We are relying on Welsh Government to now deliver a rights-based strategy, that is grounded in the needs identified by people affected by dementia. A strategy that is a living document and that continues conversations with people affected by dementia from here-on in’

Limitations of the Consultation Process:• We were dictated by their time-frame -

we needed more time

• We needed more resources

• Missed the opportunity to engage meaningfully with diverse communities particularly addressing some of the unique demographic issues of Wales including engagement with:

• Rural communities including farmers

• Welsh language speakers

• People with additional sensory/physical/mental health needs

• People in more advanced stages of dementia including those living in Care Homes.

What Does the Dementia Strategy Mean to You?

‘This Strategy means services and health authorities will have a better idea of what support we require and need it will also be a guide to help

stop the post code lottery of the provision of services. We have a right to care, support and relevant services; this strategy will help with

access and achievement. Well done Wales for developing co-produced rights-based strategy,

inclusive of the very people it is written for’Chris Roberts

What Next Wales?