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The need to add light not confusion in navigating our way forward

Not all change is progress. It would be tempting to consider this as ‘dark times’ with certain domestic and international events having happened, but it’s probably worth remembering that these events have probably happened for a reason.

Not all power is influence. The problem of course with cosying up to other power is that you can lose influence. This might happened with certain big charity we all turn to, to lead the way. Nowhere was this witnessed more bitterly in recent times as in the ‘social care crisis’ which headlined on the news. No amount of public concern, such as lack of funding settlement, social care quality and safety incidents, senior personnel in think tanks, senior politicians from all political shades, or reports even on BBC Radio 4’s Today, seemed to make any difference.

Seeing a way forward is crucial for helping persons with dementia and those who care for them. The answer of course does not lie in ministerial statements about electronic patient care records or GP access, but they are also pieces of the jigsaw to see the big picture. But what has concerned me is that people can know what  to expect following a diagnosis of dementia in England, and, more importantly, have confidence that the right people are helping them at all times.

The lack of ‘caring well’ in the NHS Transformation ‘Well Pathway for England’ revealed a real lack of understanding of what dementia is in policy makers in England. This lack of caring well sent out the clear message of a V sign to carers’ groups, the million or so unpaid family carers, respite care services, domiciliary care services and clinical specialist nursing care services, to name but a few, only to be replaced by other memes such as “training well” or “commissioning well”. Why stop there? Why don’t we measure the RTs of the CQC or NHS England, in “engaging well”?

Quite frankly, if there’s no caring well, it’s a case of leadership from the school of the blind leading the blind. There’s no point hundreds of thousands of pounds being pumped into metrics, if there’s no culture of wanting to commission services which represents the needs of people. This might include migrant populations with poor language and literacy skills in inner cities, or people resident in rural communities deep in the countryside. Or even hospices in England.

The old adage goes that if you value something measure it. Fine. But not all that matters can be measured. For example, in the drive to bump up diagnosis rates in England, were clinicians and persons with dementia themselves given sufficient freedom to take account of individual diagnosis-seeking behaviour? The issuing of a diagnosis of dementia is not like issuing a car parking fixed penalty fine. Where were the support services for the newly diagnosed persons with dementia? Or do the metrics cover, say, the attitudes of that one Roma person living alone in England with dementia, and her attitudes towards dying?

I believe that all people involved in policy in England should be aware of the enormous responsibility they have. I am not in a policy job, and do not have any vested interests, so please forgive me for speaking openly on this.

There’s been far too much protection of vested interests, and not working in a collaborative sense for fear of diluting a personal brand. There’s been a historic lack of respect for the social care profession, and I believe you can see the roots of this as far back as in the 2012 Prime Minister’s Dementia Challenge. In a way there’s been too much deference to power, when some of it’s been the ‘wrong power’. Would the right power have been so relaxed over a social care system being brought to its knees due to years of underfunding?

There’s been too much policy being repackaged in cycles of a few years, without insufficient progress. I think promoting the wellbeing of people, and encouraging social health, is at the heart of social care, and, for dementia, so is an understanding of mental health, and yet the social care is still not being given enough tools ‘to do the job’ properly. It seems almost that commissioning a cheap lapel badge of friendship will instead suffice.

There’s been insufficient critical thought of the ‘dementia friendly communities’ policy. I believe most strongly that there’s been massive progress in community engagement, and substantially more meaningful leadership from persons with dementia and carers. Don’t get me wrong. But there was also a nasty undercurrent of ‘we don’t believe in society’, where the ‘evil State’ would be replaced by localism (and devolution), “a call to social action”, and ‘public service reform’ – but, this really meant, in the age of austerity, this meant getting rid of life-maintaining lifelines for people with dementia and carers. But if you don’t believe ideologically in society, and can market community initiatives through strong brands and award ceremonies, it won’t matter if A&E targets aren’t met, care packages aren’t ready, and delayed discharges are through the roof.

The argument that I am partly making is that in the last few years, due to a combination of reasons, not least derision of academics and practitioners/professionals in dementia, things have been made unnecessarily worse by adding a lot of unhelpful red herrings to policy. But a lot of good has also been done.

What worries me now is that I can’t name a single person who has a handle on the big picture – whether that’s on the genuine issues of safeguarding in personal budgets, or provision/equity of palliative care services in dementia – at a national level. This is symbolised by the fact that we don’t actually have an English dementia strategy, and haven’t had one since 2014. Somehow some amazing initiatives, such as Dementia Care Mapping, haven’t been snuffed out by the overwhelming sense of confusion in national policy. Or the fact we know many care homes will now have to shut down because of financial pressures on small providers doesn’t extinguish some remarkable people who do work in the residential care sector.

What is the number one solution? I think money won’t solve everything, but Sustainability and Transformation Plans, with all the best designs in the world, will not work unless properly funded likewise. Also, I think it’s time for the correct voices to step up to the plate and get louder, such as unpaid carers or aspiring recipients of domiciliary or residential care, or people newly diagnosed with dementia, and some of the incorrect voices who speak the loudest due to their big cheque books to shut up more.

That was easy wasn’t it? Bah humbug.

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