In the shoes of … Paul Roberts | Chief Executive | Abertawe Bro Morgannwg University Health Board

Unsurprisingly, there is a strong theme running through many of these “in my shoes” stories, of people inspired to join health and social care services by the experiences of much-loved family members. And wouldn’t these relatives be proud that they had this long term influence, shaping the lives of their grandchildren… in this case to enter the NHS and achieve the position of Chief Executive. And a tweeting and blogging Chief Excecutive at that!

Delighted that Paul Roberts, Chief Executive of ABMU Health Board (@ABMUChiefExec) becomes our first contributor sharing what is happening in Wales.

Having recently taken part in the wonderful “Communities Can” co-production event in North Wales as well as following the “Experimenter” project in Monmouthshire Social Services, I know that it is a land exploring innovation and engagement!
And Paul also tells us about the excellent Butterfly Scheme…

My Grandad, Dementia and the Butterfly Scheme

Paul Roberts

If it wasn’t for my Grandad I am sure I wouldn’t have joined the NHS.

Every week, at lunch time, I used to walk up the hill from Bristol Cathedral, where I went to school, to the sheltered flat where my grandparents lived. Grandad used to give me 50p (a lot of money in the mid 70s) and sit down and talk to me. Experiences of his older brothers in the 1914-18 war; organising the care of evacuees during the Second World War, and life in the “chapel” community in Wrexham in the first years of last century. My Grandad could certainly talk.

But the real impact on me was his burning social conscience. He came from a mining family in Wrexham and as a young Baptist Minister in Birkenhead, which was dominated by ship building, he witnessed the impact of the depression at close quarters. He was angry, in his gentle way about the poverty he had witnessed and, in his 70s, he was outraged by the National Front marching in Bristol. He would quote Aneurin Bevan and explain to me the political issues of the day although most certainly not as an objective commentator!

My Grandad could indeed talk! But as he moved from his 70s into his 80s, his stories began to become more repetitive and used to trail off part way through. Sometimes he could be a bit aggressive and also frightened and confused. It became clear that he was suffering from dementia. When he died at 87, much of the time he was unrecognisable as that gentle man who passed to me a world view influenced by his upbringing and his by his reflections on a turbulent 20th century.

Of course, as is all too common, my mum, his daughter-in-law made sure that he was looked after and that the services he needed were co-ordinated and adequate – and I have to say generally they were. And of course, as is all too common, as a young man making my way in the world I did not appreciate everything my mum had to do to make this all of this happen. Now my own father is 80 (enjoying relatively good health thankfully) I am giving this all a lot more thought.

It is estimated that in ten years time there will be over a million people with dementia in the UK. Caring for people with dementia is fast becoming a “normal” part of our experience both in our NHS facilities but also within our families. The impact on families, often spouses or daughters, cannot be underestimated.
As an NHS there is much that we need to improve.

I am proud to say that in my own organisation, Abertawe Bro Morgannwg University Health Board we are investing heavily in dementia services; the new facility at Cefn Coed (Swansea) opening this year will be second to none. The Angelton Clinic at Glanrhyd Hospital (Bridgend) is also a state of the art facility. But it is the care for dementia patients in our general healthcare facilities which is the focus of a recent report.

The first audit of dementia care in hospitals was published by the Royal College of Psychiatrists in December and it is is a sobering document. Many of the findings are about some very basic aspects of care. In a way it is about how we deal with people with dementia as individuals: like my Grandad.

Barbara Hodkinson, a former teacher, was the main carer for her mother who had vascular dementia for 13 years until she sadly died last year. Barbara and another local carer Suzy Webster (@suzysopenheart) visited the Princess of Wales Hospital in Bridgend last month to share their personal experiences which matched the points being made in the Royal College report.

As a result of what she faced as a carer Barbara worked with people with dementia, carers and healthcare professionals to develop the Butterfly Scheme. It is a very simple three-stage process which uses the butterfly symbol to discreetly indentify to staff people who choose to be identified as having dementia or a related memory impairment.

In ABMU we have now launched the Butterfly Scheme starting in the Princess of Wales Hospital. It is intended that this scheme will be rolled out throughout the hospital and then within the other hospitals within the Board. In other hospitals throughout the UK the scheme has been popular for patients, carers and staff.

There are many educational and training resources that are easily accessible for informal and professional carers looking after someone with dementia. One of the web sites recommended to me which starts with the basics is the one offered by the Alzheimer’s Society.

As an NHS Chief Executive I am beginning to realise that dealing with the rising tide of dementia is one of the most challenging issues that I am likely to have to address in my career.