Today sees the start of the Dementia Congress in Brighton, one of the highlights of the year for our #dementiachallengers – not least because we get the chance to meet up and collaborate! There is a great programme this year and five of us are looking forward to our Early bird Pecha Kucha session tomorrow morning which is a wonderful opportunity to kick start the main conference with a bang!
This evening there will be a lively debate. I am very excited about this because once again one of my favourite people in health and care circles is taking one of the polarised positions. Last year it was Dr Martin Brunet who managed a swing to his point of view of ‘Jon Snow ecstasy’ proportions. This year it is Andrea Sutcliffe. As you may know, I’m a big fan of Andrea with our shared love of simple and effective ideas. The ‘Mum test’. The debate concerns highlighting bad practice in the care of people living with dementia.
It is a while since I have posted a guest blog and this is a special that I have been holding back to coincide with the launch of the Dementia Congress and add a bit of extra energy. Hilary Marmot writes from the heart. Her blog is not for the faint hearted. Regular readers may know that I have a personal sore spot around Continuing Health Care, which is very closely aligned to the problems Hilary explains so clearly in this latest episode of her less-than-shiny real world ‘Fred and Doris’ encounters.
As with all the guest blogs, these are ‘not necessarily my views’, just faithfully transmitting the views of passionate people who are brave enough to submit them and trying to get a real mix of authentic viewpoints. So, in the spirit of sparking debate at the Dementia Congress and beyond, we invite you to consider how things are really changing – for better, for worse, in health care in terms of the impact on ordinary people’s lives.
How to get to Eden seventeen years ago
(No guidelines or rules)
Doris, a very proud, independent, retired headmistress with dementia, is not getting on very well with her care home staff. They are all very kind but Doris always refuses absolutely everything, totally, adamantly, and very loudly. Food, company, help are all refused as Doris says she can manage perfectly well by herself, thank you. She says ‘Don’t be ridiculous’ and lashes out with any available weapon. The carers have all been on a course on personalised care but Doris is perfectly clear that she neither wants nor needs any care, personalised or whatever.
I thought Doris and the care home staff would all be much happier if Doris moved to a place where care was given by trained, specialist dementia nurses with years of experience. I phoned Doris’ husband, Fred, and he was pleased as Eden Place has had a good reputation. Fred’s pleasure was turned to delight when he discovered he no longer had to pay fees as Doris’s care was now ‘healthcare’ not ‘social care’ although the illness was unchanged.
I sent a letter to keep everyone in the picture and Doris moved to Eden Place that afternoon and they all lived happily ever after.
How to get to Eden fifteen years ago
“It’s not fair! There is no audit trail!”
“It is coming from the wrong budget!”
“If I pay that much tax I won’t be able to afford my yacht!”
Something must be done! How the patients suffered! What Doris needed now, obviously, was a ‘process’. The multidisciplinary team should all write a wordy report about Doris and it should be written in a way a group of bureaucrats who wouldn’t know a patient with dementia if they mowed one down in their BMW could understand.
Myself, the social worker, the nurse and the occupational Therapist all went to see Doris and she told us to ‘Stop being so silly’ quite loudly and with real gusto for a lady of her age. Very impressive! They all compiled a similar report from the same case notes rather than the doctor spending more time with a tearful carer, the social worker supporting a man who needed a care package, and the OT seeing a man who was desperately bored and lonely. Meanwhile Doris develops a little sore area on her bottom which she hides from the carers.
A panel of bureaucrats costing a small fortune for their expensive time deliberated her funding and Doris moved to Eden Place and she lived happily ever after. Well, after her sore had healed that is.
How to get to Eden ten years ago
“It’s a postcode lottery!”
The press are involved! So a very expensive group of senior professionals who presumably had met someone with dementia a long time ago and had obviously, totally forgotten ever working in the NHS, devised a national screening tool and assessment process. There was a press launch. Rumour was the food was really scrummy.
The multidisciplinary team now need to fill in an eighty page, standardised form detailing Doris in many ‘Domains’. The date, name and case notes number need to be added to every single bloody page including the one asking if she has had a sex change. Myself and the nurse and the social worker and the OT visit Doris and she tells us all to ‘Bugger off’.
We now have to fill in eighty pages about her memory test, her BMI, her attitude and concerns regarding her placement, her gender issues, several different scales and assessment scales that have all been highly validated by research procedures. That’s all right; we didn’t have anything better to do! We just write ‘ Bugger off ‘ on every page remembering to add the name, date and hospital number legibly on all eighty pages.
After second thoughts and threats from the management and the General Medical Council, a total revision the forms are presented to a panel that meets once a fortnight. After two attempts at presentation to fully clarify the situation to the costly panel, injuries to two of the care home staff, a pressure sore and some dangerous sedative pills Doris gets the care she needs in Eden Place and eventually lives happily ever after. That is, after the sore has healed up and the sedatives gradually stopped.
How to Get to Eden After the NHS Redisorganisation.
Etc etc. Ad Infinitum.
After six months of deteriorating in her care home, Doris hasn’t slept for 3 days. She screams nonstop. The care staff just can’t manage any more. No one can get near Doris. She has refused all care for months. I have nothing to offer, all of the services that used to help have been cut, the day hospital is shut, the physiotherapist sacked, no response in six weeks to the urgent social work referral, rejected by the home treatment team, the eighty pages for NHS continuing care is totally impossible with fifteen new dementia referrals every week, no way we can do eighty pages, no question, no way there will be an inpatient psychiatric bed. Only one option left as all other services terminated. No choice! Last resort! Nothing else left! Doris goes to A&E !She causes absolute total chaos in the Kracksin Foundation Trust hospital from the moment of arrival. She cannot sit down and paces for twenty hours out of twenty four, sleeping for no more than twenty minutes. She eats nothing, drinks nothing, and lashes out if any one comes near. She is immediately and totally sedated completely and totally out of her brain with dangerous antipsychotics and valium derivatives before she punches yet another nurse or risks the care of another really sick patient. There is no choice. The home treatment team successfully fulfil their target by not admitting her to a psychiatric bed so the MH trust can cut beds and maintain a cash surplus of loads of millions in the bank. Selling the vacant beds to other boroughs with less efficient home Treatment Teams can generates cash. That is the aim of healthcare isn’t it? Placement is needed. Fred is distraught; he phones and begs for my help. I phone the social worker at the Kracksin Foundation Trust. She has applied to the large team now employed to fill out the forms for NHS Continuing Care because the process is so complicated and long winded that no multidisciplinary team can possibly manage them. The forms have been done at huge expense and Doris does qualify. All patients qualifying for NHS Continuing Care used to go straight to Eden Place but the new Commissioners set up the ‘Any Qualified Provider’ system, quickly renamed as ‘Any Cheap Provider’. Eden Place is not on the list as they cost too much because they employ psychiatric nurses trained to deal with dementia rather than someone who is prepared to do a really difficult job for a low wage. The Social Worker says “You have to phone my manager”, so I phone her manager. She says “I understand what you mean but you have to phone my manager” so between patients in the clinic I phone her manager and she says “I agree, but you have to phone The NHS Continuing Care team” so I phone their office and they say “You have to phone our managers” so I phone their managers and they say “You have to phone the commissioners” so I phone the commissioners between patients and they say “You have to phone my manager” and so I phone that manager between patients and they say “You have to phone my manager” and they say that what I say makes sense but I have to phone their manager to give permission for a more expensive care home and I am now phoning that manager and they agree that I make sense but permission has to come from their manager and so I phone that manager and she says that she thinks Eden Place are not meeting their targets on resuscitation skills training and they are not ‘Any Cheap Provider’ and I say that’s OK because Doris is ‘ Not for Resus’ and the bed she is in is twice as expensive. He says OK that had not occurred to him, she can go to Eden Place. Doris has now lost five kilos, has a large pressure sore and is suffering from side effects from the sedatives. Eden Place come to assess Doris and the nurses at the Kwidsin Foundation Trust say she is the most aggressive woman they have ever come across and when they try to wake her she is totally completely unarousable as she is completely sedated. I tell them she is a retired teacher. They say they didn’t know. Eden Place says ‘no, she needs an assessment in a psychiatric bed’. I can see their point. The HTT team say “No, she can’t have a bed, we need to sell those beds for profit. People with dementia are bed blockers.” I ask if they could phone their managers but they say their managers’ job is to prevent admission to psychiatric beds so I don’t bother and haven’t really got enough gaps in the clinic any way. The assessment nurse from Eden Place feeds Doris her lunch as the health care assistant from the Kracksin Foundation Trust hasn’t had enough training and experience to manage this. Doris has now been sedated in the wrong bed for ten weeks and has lost 10 Kilos. Better than Weight Watchers!
“Please help!” asks Fred.
I phone Eden Place between patients and luckily they need a favour from me. They agree to try and look after Doris if a 1 to 1 nurse is employed while she is assessed if I write a prescription for the dementia medication which has been stopped because the doctor at the Kracksin thinks it is a waste of money and as a result Doris has deteriorated significantly since the drug was stopped to save money. I write one letter to the commissioners and one to the providers to evidence the need for an ‘Off Cheap’ placement between patients and a prescription for a cheap safe drug, from the wrong budget (heinous Crime!) Doris moves to Eden Place and they say “We don’t really need these sedatives or the 1 to 1 nurse and Doris puts on weight, her pressure sore heals, she is gradually withdrawn from the sedatives and the long term side effects of the antipsychotic sedatives have worn off.
She eventually lives happily ever after. Or does she?
Doris has just been reassessed as no longer qualifying for NHS Continuing Care by the specially commissioned team. “What will happen now?”, asks Fred.
Eden Place has half of the beds now empty as the excellent care if provides is too expensive. “Will it close?”, asks Fred. Eden Place has been privatised and numbers of qualified staff cut so that at night there is only one nurse for 24 patients. Doris is changed into her nightclothes at 5pm. “Is that good care?”, asks Fred.