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Personal accounts

Development and implementation


Helen Rochford-Brennan

 

  I am proud to sit on the Monitoring Group for the Irish National Dementia Strategy although I think the Minister for Health would find it easier if I didn’t!

A strategy is a critical first step, each country needs to consider what it wants to achieve for its citizens living with dementia. However, strategies have to be implemented. To be successful, a strategy must be funded appropriately and there must be a significant attitudinal change from government and health care providers.

When the Irish National Strategy was developed I stated that words are not enough, we need action and implementation. And we needed to see a realisation of our basic human rights. I am frustrated because I see little practical change for me and my family after four years of the Irish strategy.

People living with dementia are denied their human rights from the time of diagnosis. We are not always respected or informed. As we live with the disease we navigate systems and structures which are not person centred or rights based. As a result, either deliberately or by omission our human rights are denied.

I have a human right to healthcare. The Irish National Dementia Strategy is working toward upholding these rights but we have a long way to go yet.

Helen Rochford-Brennan is Chair of both the European Working Group of People with Dementia (EWGPWD) and the Irish Dementia Working Group.


Chris Roberts

   All people living with and affected by dementia should be at the centre of discussions about how services are provided.

This was highlighted with the impact of people in Wales made when sharing their experiences of dementia with the Welsh government ahead of the country’s Dementia Action Plan. This was a fantastic example of what happens when you involve the people who are going to be in receipt of these services.

It started when a couple of people with dementia and a carer became involved in the development of the Welsh Dementia Action Plan 2018–2022 by them attending a public consultation session, one of only two that were planned. They swiftly realised the lack of public engagement, especially from those who were actually affected by dementia, diagnosed, carers and family members, all whom this was on behalf of.

After speaking to the Welsh Government lead, to explain the importance and the right of people with lived experience being involved in these consultations and in the policy-making processes, the Welsh Government provided additional funding to hold a series of public dialogues and expert meetings across Wales.

People with dementia, their carers and families were engaged as key experts on dementia task groups within the Welsh Government, with two phases of wider public consultations held across Wales, where over 400 people with dementia, their carers and families provided input into the Welsh Dementia Action Plan.

The Welsh Government and the officials involved - listened, acted, edited and supported all the voices that mattered. It really was ‘Nothing about us, without all of us’!

By sitting equally on the task and finish group as experts in our own right, we not only made valid contributions, but instigated major changes to the initial draft. It was an amazing experience and example of true collaboration and inclusion, the experts by experience and the professional experts.

This ultimately affected the nature of the Welsh Dementia Action Plan and the lives of people affected by dementia. Our involvement changed the whole plan, which in turn, will change lives.

We also changed the minds of the people at the top, the people in those positions that have the influence to make the necessary decisions. We were no longer a ‘tick box’ consideration, but equal members of the group and society as a whole.

The Welsh Government continues to engage people living with and affected by dementia by guaranteeing places for people diagnosed and affected by dementia on the Implementation and Advisory Group to carry the plan forward, to be equally involved and to oversee that what is put in place, also has a collaborative rights based approach.

Chris Roberts is Vice-Chair of the European Working Group of People with Dementia (EWGPWD) and a member of the 3 Nations Working Group.

 

 
 

Last Updated: Friday 26 April 2019

 

 
  • Acknowledgements

    This report received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of the Yearbook represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains
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