A police sergeant, #IntegratedCare and DLB (continued)

... One of the speakers at the KF conference made a reference to overcoming years of institutionalized silo training amongst care professionals. So it is perhaps no coincidence that the catalyst here was a police sergeant.

It is quite a story but raises a number of questions about the health & care system in general and people with Lewy Bodies dementia in particular, so worth giving a few minutes of your attention if you are interested in these topics.

My friend Charles (not his real name) lives in a charitable almshouse. There is a part-time warden employed on site who keeps an eye out for residents but does not have any formal care responsibilities. What used to be Supporting People funding pays for alarms and a distant call-centre with emergency call-out. Beyond that residents are entirely independent or a few have individual care packages.

Charles has lived there some years perfectly happily but last summer he developed regular nightly hallucinations. He was absolutely convinced that people were coming into his flat, first an old friend with whom he’d fallen out, then strangers. So vivid were the hallucinations, that he could not be told they were unreal. Generally, he tolerated these haunting visitations but sometimes the people seemed threatening. He started calling the police who would turn up after a while and find nobody there and go away again.

He was persuaded to visit his GP for a dementia check but he was able to rise to the simple memory test and so proudly walked away “in the clear”. He knew that he was hallucinating other things during the day such as seeing cats and dogs that were not there. When I accompanied him for another test, I was under strict instructions not to mention the night-time visits or hallucinations because he was concerned that he would lose his accommodation if he received a dementia diagnosis. He has always been suspicious of authority and had a couple of run-ins with some of the almshouse management in the past. It was essential that I retained his trust. Only on a further visit was I able to have a quiet word with the very sympathetic GP while Charles popped out to give a urine sample.

By this time, there had been an occasion when he’d called the Fire Brigade because he was convinced that one of his “visitors” was trying to start a fire. The warden was also aware of other indicators of dementia such as strange remarks and losing his key or leaving his wallet in the local newsagents. The warden was therefore pressing the GP to make a dementia diagnosis in order to trigger intervention by other services. Instead the GP referred Charles to a Community Psychiatric Nurse who duly visited and did a great job of winning his trust immediately, but again he performed reasonably well in her tests while admitting to some hallucinations. She referred him for eyesight tests preferring to conclude that his condition was organic and physical rather than mental. Co-incidentally or not, this enabled her not to progress his case within the CMHT.

The eye tests were clear and his condition continued to slowly decline. I started to get distressed calls some nights about unwelcome visitors.  On those occasions when I could rush round, the visitors would suddenly have slipped out by the time I got there. At least Charles would be calmed then.

The GP referred him for a CT Scan and we had an extremely quick, efficient and friendly hospital visit a few weeks later. However, the experience was spoiled by not being able to get the results for weeks. It would have been far better to have spent longer in the hospital at the time of the scan to have a consultant review it and tell us the outcome on the day. The CPN’s computer system was down when Charles went to her for the result and then she went off sick. Some years ago, I know there was a system in place locally for hospital results to be shared with GP’s electronically, so I went to her practice confident she could tell us. But no, she had no access. I don’t know if her practice just was not on the information sharing system - or whether it had been de-commissioned - or perhaps it covered some results but not CT Scans. It was not the time to engage her in such discussions.

Anyway, she now agreed to chase the other services for action and the following week I received a phone call from a lady proudly telling me she was the “Single Point of Access” (SPA) for health and social services. Great – at last a single body taking responsibility! Yes, she could arrange for two separate assessments – another one from the CMHT and one from social services. There was some concern amongst those of us informally involved with Charles that he might not be taking his medications properly or eating regularly so daily visits arranged by social services might help. The SPA lady agreed that he had been marked as quite urgent. “Good, so how soon is he likely to be assessed?”

“Oh, probably about 4 weeks, but then we do get into the Christmas period.”

At least that was progress of sorts but it was also clear to me that the more Charles was told about different assessments and having to wait for various professionals, the more this stressed him and deteriorated both his condition and his peace of mind.

The call from the SPA was a Friday. On the Sunday night, he again had threatening “visitors” in his flat and called the police. They had taken to ignoring his calls, but on this occasion they sent a community sergeant round in the morning who took the initiative. He summoned the CPN and the GP there and then. They now both accepted the urgency and that Charles had a mental health problem of some sort. The CPN persuaded him to go with her to hospital – to a specialist unit for older people with mental health problems. 

It is now about two months later and he is still in that unit, first on a Section 2 (28 days) and now on a Section 3 (up to six months) because he has tried to leave. I have effectively been told by the consultant that he is in their care and they need to take their time monitoring him and then in due course his ability to return home will be assessed and I need not worry. These were not their exact words but that is the message I received.

This experience has raised lots of questions for me, but as regards the issue of Integrated Care, what are the lessons?

Firstly, could admission to hospital have been avoided? Probably - and apart from the cost to the NHS, even the consultants agree that the ward is not a pleasant place for Charles to be.

So secondly, what could have been done to prevent hospital admission? For a start, the GP could have taken the concerns of the housing warden more seriously. Neither the warden nor myself had any awareness of the highly particular symptoms of Dementia with Lewy Bodies. (He still has not been officially diagnosed but we are all assuming this is his condition). DLB will become an increasing social problem that anyone working with older people should know about.

The CT scan actually came back showing no clear abnormalities. Perhaps if the GP and CPN had taken the possibility of DLB more seriously they might have referred him for the more expensive MRI or DAT scan straight away.

If all those involved in his care (including me and another friend) had managed to share our knowledge earlier, then perhaps hospital admission could have been avoided through some low level daily support instead. But it is difficult to see how this could have been achieved in practice with Charles’ involvement and consent. I certainly don’t think we could rely on an IT system between the statutory agencies (sorry, old IT colleagues) – if only because the police held some critical information and there would be too many barriers to electronic information sharing at this level of detail with the police.

And actually, Charles is relatively lucky in having me and the almshouse warden keeping an eye out for him. There are many single, lonely older people who do not and for them it is even harder to see how a similar situation would be resolved without reaching the crisis point of hospitalisation. That also raises the enormous social question of how we look after our ageing population generally, while we all live in increasingly small and isolated households.

If anyone has constructive answers or comments, then email me and I will include them in my next blog!!

In the meantime, I struggle on with many others to make small progress on limited #integratedcare systems, eg hosting a meeting at techUK for health & care IT suppliers – hopefully with the Dept of Health. And the DH and NHS England are right to insist all systems have “Open API’s” in future – though we need clarity on what purposes those API’s should meet.

Finally, as Andrea Sutcliffe, Chief Inspector for Social Care at CQC stated in her summing up at the Kings Fund BCF event: all this depends on effective leadership. That is the cue to plug my forthcoming book: “Making a Difference in Adult Social Care – Release your leadership ambition” – due out in February. Andrea is one of the featured leaders in it.

More details on this website soon!