New service for dementia starts - August 15

How can we support and improve the lives of those affected by dementia within my workplace?  I had the joy of sitting with our steering group last week- a small group of four committed and dynamic staff working on implementing our new roles, secured through the Florence Nightingale work I,m leading, in HRCH. It was a joy because they care as much as I do that we have a responsibility and are ideally placed to “do something”.

Our postholders ,like me, want to change the World but my goodness the possibilities are endless and we are very excited about them. The intention is to make such a success of these new roles that we can promote them and secure them across the Trust so that all our patients benefit and not just those in one Borough. We know that the numbers are rising and one of our individual clinicians did an experiential audit to identify that at least a third of her caseload were affected by dementia. We know that by 2015 there will be one million people with dementia, two thirds of these will be women and the proportion of people with dementia doubles for every five year age group.

In a climate where the health and social care budgets are being stripped down and criteria changed in an attempt to manage this, the role of community services like mine are essential in preventing Hospital admissions, self-management and improving quality of life.

Two people in one side of the Borough can’t meet all these needs, but they can certainly make a start, improve the access to and signposting available to those living with/affected by dementia and work together with social care, voluntary and independent sector to improve how we all work together.

Our Trust has ambitions to be 100% dementia friendly and from September I will be re launching our commitment to this. Everyone is affected by dementia- not just adults services, but children’s services too. Actually I don’t think I know anyone who hasn’t been touched in some way by this condition.

We now have our new roles in post, planned sessions not only from the health CQUIN but also from our volunteer dementia friend’s champions with the Alzheimer’s Society. We will be measuring aspects of care that no one else does, because rather than metrics based on activity and data they will be based on “how it feels”. We want to understand the gaps more so that we can shape the future in partnership with commissioners and colleagues. We will be skimming the service of what it’s really like and probably opening a can of worms, but without opening the can you can’t release the richness inside or find a lid to keep it safe.

The project is progressing and it is exciting. Let’s keep watching together.

Tears , tantrum and time - a carers perspective

Three days with mum, the last culminating in a meeting with the social worker to review her package of care. Being a distant carer is frustrating, isolating but  important. Being a voice for those lacking strength and system knowledge, exhausted by the effort of loving without praise, rest or reciprocal feedback is an essential role.

What I see as a distant relative is different from the lives my parents are actually living. I want to help, to ease the pain and burden and wonder daily at how this 78 year old man manages when it takes three of us to transfer from bed to chair. The regular falls and the increasing anxiety that people with dementia often experience results in a fear of falling. I wonder how he manages and keeps well enough to continue in his role of husband, friend and carer.  But then I  also see a woman who is terrified, leaning on the arm and chest of the man who's loved her all his life, who shared pencils with her at school, sheltered her from the rain and travelled the World together.  The effort of caring and the times that are worst are from Dads perspective ,the occasions where she falls or he cant get to her in time to maintain her dignity. But he doesn’t want to relinquish his role in caring as these  times are also now the only occasions that he can hold her in her arms and actually have physical contact.

Now sleeping in a Hospital bed at night, in a Buxton Chair during the day, - the sitting together --mum protected by his love and engulfed by his arms have gone and the only time left for closeness is in caring duties. No wonder that, despite our concerns for his health, he doesn't want to even discuss nursing homes. The house can be dirty and so my frequent visits are now engaged in cleaning as well as caring, but it's worth it to see them at home together, where they belong. As long as he wants to do this, we have to honour and enable that, despite the fears that he isn't really, coping. But we also have to shout for their rights and abdicate for them as it can feel as if society really doesn't see, hear or care about the thousands of people barely coping at home. As long as it's cost effective and minimal they can walk out the door and tick a box! In an unsustainable economy we simply have to think and behave differently if we are to protect those people who made us and society what we are today.

My personal experience and fortunate upbringing has enabled me to progress all aspects of my role but in particular my passion for dementia with vigour and enthusiasm. I believe that experience makes us better at understanding the reality of caring and in working in true partnership, as equals with those who are receiving services will result in a better service.

My personal experience has shaped my belief system and commitment to patients and I draw on this every day as I strive to lead a quality and patient focussed organisation.  My next BLOG will describe the FN project and progress with it in more detail and I hope show how it is making a positive difference to those in receipt of care.

A rose in the morning surrounded by the sheen and sparkle of dew. As the sun peeps out and smiles, the petals turn bright and vibrant. How difficult then when the sun stops shining and the sparkle becomes like a cataract- discoloured and stubborn.  Underneath and within is the young blossom still, bringing joy and colour to the World around it .Don't pull the petals off, watching them fall to the ground where they wither and die or become embedded in the soles of shoes. Rather keep a gentle watch, take joy in the changes in light and shade, the ability to still sparkle at times and the vulnerability of time.