Reform Blog – ‘In partnership: why the voice of Carers is so important'

It is widely recognised that the reform of adult care and support will be one of the biggest challenges for our health service and communities but that it is absolutely necessary if we are to have a sustainable and viable service for the future. It is very significant that during this important Carers’ Week that we launch a call for family carers to be a part of an Independent Expert Carers Panel, which will be integral to this important project.

The Department of Health (DoH) is positively embracing the challenge of the reform by acknowledging that family carers presently provide the backbone of the social care provision and agreeing that they are significant partners in delivering any change.

With approximately 210,000 informal carers in Northern Ireland (2011 census), providing nearly £4.6 billion of care in communities, this is equivalent to the total annual Health Budget for Northern Ireland. Making sure that these important carers’ voices are central to the decision making processes was one of our main priorities when a group of carers approached the DoH for a different type of partnership.

My involvement started with my sister Orla, who is 48 years old and has learning disabilities.  She needs help with all personal care, is now in a wheel chair, has limited communication, which can result in behavioural challenges and has epilepsy.

My mum will be 80 in June and my father is 86.  Orla went into residential care nine years ago but my parents still pick her up every Saturday and she stays at home until Monday morning.  She attends a day centre which she has been attending since she was 19 and which she adores.  I should add that it nearly devastated my mum when Orla went into residential care and I don’t think she has ever become reconciled to that.

My mum has been a great activist all her life for the rights of people with learning disabilities and has supported many in her community to fight for services for their loved ones.  In the same vein, I ended up on the streets, with my mum, placard in hand, when a consultation in 2015/2016 threatened the closure of a Learning Disability Day Centre in West Belfast.  The implications of such a closure on the service users and their family carers were going to be devastating. I was amazed at the support of the community workers, unions, political representatives and carers from across Belfast that came out to support us.  It was a very moving day when I sat with my mum in front of a microphone to address the Belfast Health and Social Care Trust on why they could not close this centre. My mother was talking about ‘our children’…… ‘I know you may think of them as big men and women but they are always children to us’. 

This simple truth is so real for many families and to see mothers, fathers and siblings in their 60’s, 70’s and 80’s still caring and fighting for these loved children, is probably a great example of humanity for us all.  It is a lifetime of caring and there are so many family carers like this. We need to make sure that we do no harm to these vulnerable people in our communities and their family carers.

We managed to have the proposal for closure reversed and have made some good progress in working closer with our service providers (Belfast Health & Social Care Trust) on what is needed but are realistic that the journey is only starting.  It has become apparent though that the days of professionals sitting behind closed doors to design services for service users and carers have started to fade.  It is obvious that aside from being more effective and efficient to work directly with those using services, there can be great benefit and knowledge to be gained from listening to these ‘experts in care’.

My inspiration comes from the host of carers that I have met. Every story is different but the selflessness, resilience, courage and knowledge are common threads. In partnership – this is the only way that robust solutions will be achieved for the needed transformation of our health services.

The Independent Expert Carers Panel will be established to be equal partners with health professionals in the project structures of reform of adult care and support.

The Department is currently recruiting 20 family carers from across Northern Ireland who have experience in caring for a family member or neighbour, who needs care in their old age, has mental health challenges, a learning disability or a physical or sensory disability.

This will be a challenging but exciting project to be part of. We need carers who will impart their own lived experiences, be prepared to challenge the status quo, be good team players, be keen to learn about the complexity of adult care and support, be proactive in actively engaging with carers who are not represented on the panel to reflect the wide diversity of carers’ experiences from across our communities and be willing to contribute to problem solving and decision making.

If you don’t feel that membership of the panel is something for you but would still like to contribute, then please keep an eye on the website for other opportunities to get involved.  Every voice matters and is welcome.

YOU can make a significant difference to our adult care and support system by being a part of this group.  Thank you for your consideration.

Brenda Aaroy, Carer (11 June 2018)

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