Too negative, too positive, or should I just be quiet? (thoughts on the experiences of people living with dementia in the UK)

This week I visited the Metrodome in Barnsley; a 1980’s sports-centre in the town. It was the Best of Barnsley Dementia Care Awards.

This was the first ceremony of its kind in Barnsley and it was great to see people coming together to demonstrate and celebrate their good work.

My last Dementia Care Awards was in 2013 with my team from Mallard, when we won Best Dementia Friendly Hospital. I have vague memories of too much sparkling wine and Angela Rippon.

This time I had been asked to talk about dementia, in my position as a consultant physician and advisor for the clinical network in Yorkshire and the Humber.

I had 30 minutes and was uncertain where to start.

I knew the audience would not all be health and social care people; this wasn’t a lecture on the ins and outs of dementia, more perhaps a reflection on the current state of care for people living with dementia, probably in Barnsley, probably across the UK.

I arrived a little late and Jenny, a woman whose husband has dementia had begun speaking.

In my preparation I wasn’t sure not only who to pitch the talk at but whether to be positive and upbeat or more realistic; people don’t necessarily want to listen to bad news. (Although, isn’t that what the News is?)

Jenny talked about her husband’s experiences, which, were good in part but very bad in others; I felt that she had given me license to err on the side of what it is like, rather than solely celebrate the successes.

This was perhaps wrong.

Jenny’s husband’s experiences at diagnosis, issues with mobility and continence and a harrowing time in hospital set me up.

It did not help that the microphone batteries kept cutting-out.

There wasn’t a spare and a times if felt a little stand-up.

Again, what is there to laugh about when discussing dementia?

Not a lot, although, laughter is often a representation of our worst fears, so, perhaps it was OK.

I began explaining who I am.

How I came to be standing before a group of people from health, social care, voluntary sector as well as carers and people living with dementia.

I always feel it is important that people know who you are; that you are to some extent credible and not just some guy or apparatchik.

I told my story of moving from hospital to hospital and now community; the highs and lows of hospital life – the current pressure on beds, on staff, on patients and visitors; sure it is not all bad, yet, if your mum is the 93 year old who has remained on a stretcher in A&E for 13 hours or you are the patient moved from ward A to B to C to accommodate new arrivals, the experiences are not fantastic.

And this, perhaps the essence of today’s blog.

It relates to a theme that has troubled me throughout my career, particularly that in which I have been trying to make thing better, for patients, for staff, for myself.

An essential component is recognising that things are not great; indeed, some are bad and need to be improved.

This might superficially seem straightforward;

‘Our rates of X are not as good as we would like, let’s improve X’ – with ‘X’ being anything; waiting times, positive patient experiences, diagnostic rates, length of stay, and so on.

Much of this walking a tightrope where it is safe to say, ‘We are improving,’ but not OK to say, ‘It’s not safe.’

I have often, and this might relate to an inner depressive component of my personality erred on the side of complete openness and honesty; not painting bad to be OK or just not good.

When a patient is stuck in bed, incontinent, wet, cold and no one is coming to their attention, to me that is bad. Sure, no one would design such a system, no one would go out of their way to objectify Frank or Harry or Sally into a DToC, LLoS or EDD (Delayed Trasfer of Care, Long Length of Stay or Expected Date of Discharge); it is not in our nature, yet, the pressures that people are experiencing, the managers, the clinical staff and others, results in behaviours that given time and space we might not consider ideal.

And this was my dilemma.

I know from experience that too much bad is not good; it is too easy to moan.

I had a list of the positives that have taken place over the past decade in the UK – Dementia Friends, End PJ Paralysis, the blossoming of Person Centred Care, B:Friend, the democratisation of health and social care (doctors not being at the centre) and so on.

Yes, these are great.

Yet, I still see people lonely; I still see harmful medicines prescribed when people should know better, the bashes and bruises from falls, the quick-fixes and bad practice, ‘You are not waiting for the bus home, you are in a nursing home.’ ‘Do not stand or you will fall!’ I hear of the people walking into hospital who are later wheeled-out having become incontinent or their dementia or delirium having worsened because of unnecessary tests or treatments. I speak with relatives who struggle to care for their failing mother or father with inadequate support; I visit the homes of people existing, amidst threadbare carpets, dim lighting and episodic carer visits.

Sure, there is good; it is just that the bad feels so bad.

And so, I perhaps over-did the bad.

Sure, Jenny commented on the accuracy of my descriptions; I was not just a merchant of doom – what I said matched her experiences and those of her husband.

Five years ago, dementia was considered a national priority; it has now fallen off the radar. The headlines grabbed by other concerns and the perhaps broader older peoples’ mental health, parity of care or ageing well, which are fine, yet, we have only begun to tackle the challenges faced by people living with dementia and the systems that support them.

Much of it seems so very straightforward.

Ensure independence, autonomy and the right care and support for people living with dementia (and, yes, older people in general) and the NHS will be fine.

Keep the people out of hospital who shouldn’t be there, support those to leave who have recovered, invest in community care, ensure wellbeing and community and you will be able to have your elective hip replacement or hernia repair in six weeks.

But no, older people and those living with dementia are not seen as central to the solution; they are often viewed as the problem and that is where things break-down.

Afterwards I offered an apology for the serious tone of my talk; people were heading to the bar and did not need to hear that stuff; this was a celebration.