I was digging about in my garage the other day and found an old snow globe. I am afraid I have always found these ornaments – the mainstay of souvenir shops across the world – something of a disappointment. Give them a good shake and there’s a briefly pleasing fall of artificial snow before it all settles down to being the sugar-coated scene it was before. I mean, what’s the point in that?

Earlier this week I was reminded of my find by an email alert from the Health Service Journal. The HSJ – as it is more commonly known – is the journal that follows, investigates and reports the every move of the NHS. A little like one of those birds that ride on the back of an elephant. It is ever-present, pecking away. Some I am sure, see it as an irritant. Others observe that it keeps its host ‘clean.’

Anyway, HSJ was trumpeting one of its many ‘lists’ of the year. In this case the 2016 HSJ100 list of people with the greatest influence in the NHS (which actually comes out in October I believe). The accompanying editorial commentary heralded ‘huge shifts in power and influence’ across the NHS. On closer analysis I can’t say I came to the same conclusion. In fact the first word that came to mind was really quite unseasonal.

Power and influence might have shuffled around the NHS top table. It might have spread to local NHS dominions as the editorial says. But it has certainly not found its way into the hands of patients and carers. Now that really would be a power shift. Not a snow globe of one.

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[Even the poorest indicator that such a power shift was occurring – the number of ‘patient leaders,’ on the list (a term which has been purloined by the system as cover for who it chooses to – rather than who it should – work with) is this year notable for the scarcity and randomness of the names that appear. Though all of those who do get ranked are to be admired and respected.]

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Rest assured, my assertions have foundation. Some of it is personal. Some of it can only be summed up as ‘events I have chosen to take personally.’

First, the personal. Two weeks ago my father was finally discharged from hospital following his stroke in July. That’s a long-haul. It will be familiar to many families. That the last 6-7 weeks of our struggle – and there’s no other way to put it – amounted to how we could spring him from hospital in the manner of a fugitive will also be familiar to many. In spite of there being no clinical reason for him to be in hospital, we waited and waited and waited for social services to find the ‘capacity’ to care for him in the best place possible and of his own choosing – at home with my mum. Two months of draining, upsetting, costly (for all concerned) ‘imprisonment’ in his hospital room.

I knew we were in trouble when the first words the social worker spoke to me were not ‘how is your father doing’ but ‘how much money do they have?’ The opacity of the way social services communicated with us from that point onwards. The lack of timely and regularly information during this distressing period. A creeping, overwhelming sense of powerlessness that threatened to engulf us all. Not to mention the threatening comments made by another social work to my mum and dad one day when they were alone, implying they were to blame for the situation. Nothing quite prepares you for the staggering inhumanity of it all.

Any ounce of remaining empathy I may have had for the local authority and the underlying causes of its predicament dissipated from the day my father came home. For on each and every day following his return home – and on three occasions on one single day – its financial assessors phoned up to make an appointment so they could see how much my parents have at their disposal to pay for care. I don’t begrudge them the need to do this. I do begrudge the way in which money rather than a duty of care now clearly motivates – no, spurs! – the system into action.

The following conversation between me and one of the financial assessors sums up how little power has shifted to the patient
(or the lack of patient-centredness to use the term of the day).

Financial Assessor (FA): Hello Mr Denegri, I am phoning to set up an appointment for us to carry out a financial assessment of your father’s income and assets. This will be over the phone.
Me: Can you not come out to visit them? Both my parents are very hard of hearing and will find it difficult to do it over the phone.
FA: We don’t do appointment visits I am afraid. Only over the phone.
Me: Good job I’m around then. What if they didn’t have me? They’d really find it difficult over the phone. Can you send us the form in advance so we can look at it and be ready?
FA: There isn’t a form as such. What happens is we ask you some questions – should only take 20 minutes – and then we send you a completed assessment to for you check and sign to say it is accurate. I can send you a list of the things we need to find out about.

This was emailed to me later the day. It’s a list of all the sources of financial income/assets a person may or may not have and needs to declare. There is nothing to accompany it which says how the information is used, why and what might happens as a result.

Alternatively I could mention the mounds of unnecessary equipment sent home with my Dad. The vast majority of this already languishes unused in the garage or in boxes in his room. Some of this has been reclaimed but only because my mum arranged for it to be picked up. This is a system that is just not thinking. And when it is thinking, it is trying too hard at the wrong things.

If you detect anger in my prose then you would be right. Perhaps you might feel it inappropriate. But I can assure you – as many patient advocates will testify – any anger I have is nothing compared to the sheer frustration I feel about a system that leaves one feeling impotent, to blame, and trundles on regardless.

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Now for the matter you might think I have chosen to take personally.

The report and recommendations of the Accelerated Access Review (AAR) was published six weeks before Christmas. Chaired by Sir John Bell and Sir Hugh Taylor it sets out a series of measures that could – to paraphrase the newspaper headlines of the day – cut up to 4 years off the 15-20 years it takes to develop new treatments and innovations. If achieved that will be no mean feat. Millions of patients could benefit. The ball is in the Government’s court – it will respond formally in the New Year.

Good though this is. And it undeniably is. I am not sure the report’s claims of being patient-centred in how this will be achieved stand up to closer inspection. They might have done if the work of the patient theme of the two year inquiry – most importantly a set of statements shaped by patients and carers about what was important to them about innovation and research – had been published as part of the main report as had been signalled would happen in an interim report. But they were not. It was left to National Voices to salvage something by publishing them under separate cover on their website.

It all looks a little unchivalrous to dismiss the patient voice in this way. Hence the source of my anger. Call me old fashioned but the lack of courtesy, the condescension implicit in this sort of decision makes my blood boil. I am sure there’s a reasonable explanation. But the worry is that it says something deeper about the attitudes to the patient voice that run deep, very deep among senior decision-makers. The same might be said about Sustainability and Transformation Plans but I am no expert on that particular saga.

In the instance of the AAR, the proof will be in whether the patient voice is encapsulated in the way the report is implemented; the extent to which it is included on the AAR implementation group; the degree to which AHSNs and other organisations will be asked to hold a mirror up to themselves using the aforementioned statements over the coming months and years.

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So sadly – and in spite of some positive signs like the Patients First conference last month – one must conclude that just like that AAR report we do not start 2017 with patients and carers, their professional colleagues and policy-makers on the same page. Nor has there been a power shift across the wider health and social care system in favour of the patient and the carer.

The context for changing this does not look good. The months and years ahead are going to be extremely difficult. In science in particular. Partly because of the scale of the Brexit challenge and the defensive postures that are being taken in response. Partly because of the deep conservatism that has always driven the anti-EU viewpoint and is the prevailing force in the land at this moment in time.

Who can blame colleagues for thinking that falling back on old behaviours, or shrinking within the traditional boundaries of institutions and organisations, to protect ‘what’s left’ is the way forward. But it is not. And in public involvement it represents a very real danger; a threat to the steps we have made to democratise health decisions including those made in research. To the role that the public have in helping this country do ever more high quality research that focuses on patient needs and priorities.

2016 might have shaken us up in many ways. But the idea that things have dramatically improved for patients is a sugar-coated one, best consigned to a snow globe. In 2017 we must question and challenge the prevailing consensus like never before. Lives depend on it.

[apologies for such a long blog, you can blame it on five days in bed with flu]