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  • 06th October 2016 | By David Jolley

    This was the week when Doran James was born to Emily Ann Jolley and her husband Joe. This was Tuesday, a week ahead of schedule and at pace which meant a home delivery. All are well and we rejoice.

    Monday had found Care Homes on the front page of the Guardian, Kate Lyons and Helena Bengtsson declaring ‘Hospitals and care homes fail food safety inspections’. The article confirms that actually 98% of Homes and Hospitals complied with the Food Standards Agency criteria. Just as well I read on beyond the headlines, I might have thought Care Homes were bad places!

    Later in the week Denis Campbell raged, ‘Care Home residents deprived of liberty in record numbers’.

    Of course it is absurd and worse, that large numbers of people with dementia in Care Homes are being made subject to Derivation of Liberty Standards (DoLS) at great expense, often to their distress and inconvenience especially when they die and are subject to a coroner’s inquest. But this is no fault of Care Homes and the bureaucratic process does not lead to their being ‘put in straps, locked in or given behaviour controlling drugs’ as Denis Campbell seems to believe. On the contrary, the legal process, if it does anything, might reduce the likelihood of such malpractices.

    The present situation, which is draining Local Authorities of monies they might otherwise use to provide better care, is the logical but unreasonable consequence of rulings from the Cheshire West.

    Case: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/485122/DH_Consolidated_Guidance.pdf

    The error of the Law’s ways is widely understood. No other country in the world has shackled itself with such legislation and the Law Commission is working to find a solution to the problem we, and especially Care Homes and their residents, are living with. What a shame that Denis Campbell couldn’t find it within herself to write sympathetically about this.

    Wednesday took me to The Leigh Sorts Village where Wigan and Leigh Hospice were running a training day for staff of Care Homes www.wlh.org.uk/

    I met wonderful courageous people who care despite the endless difficulties and misrepresentations. I heard about the initiative which has seen the Hospice create a team of five nurses working from the hospice to support Care Homes as their residents near death, sometimes with adverse symptoms and complex needs. Just marvellous to witness what is being done. Many residents, of course, are dying with dementia and it was my role to talk a little about this and to share the work we have done from Willow Wood Hospice, http://www.willowwood.info/patients-and-families/dementia-support

    It is marvellous to know what is being done so generously and positively by Care Homes and with Care Homes by hospices.

    We were easily into a dialogue which champions those working in this service as midwives to the dying. Just as important and just as worthy of respect and high kudos as those midwives who introduce small individuals into this world of ours.

     

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    One of the supplements that came with the Guardian on Wednesday carried a front page picture of the beaming Sir Michael Parkinson. A very acceptable face of ageing with silver grey hair and eyebrows, chuckle line wrinkles and sparkling eyes and teeth. His contribution to the message comes in one column on page six. His mother lived her last months with dementia and he joins the lobby for better care in hospitals and more generous funding of social care for people with dementia so that they are not inaqroqriately kept in hospitals. This is a waste of money and detrimental to their wellbeing.

    True, and we are all supportive of this view. It does seem to us via our Dementia Conversation meetings, that some, perhaps many, general hospitals are making big efforts to improve staff understanding of dementia, and learning how to care for people with dementia and their families with greater respect.

    The supplement is not a Guardian production but distributed by them, within the newspaper, for Mediaplanet https://www.mediaplanet.com/en ‘Story tellers with a purpose’

    So we might feel a little uneasy that this is not an independent analysis, but portrayal of a situation with a well-rehearsed message from a particular point of view.

    The origin is transparently the Alzheimer’s Society, with contributions from Dementia UK, Barchester, Alzheimer’s Research UK, Bluebird Care and others including Merck, Share and Dohme Limited. The latter links to a same page article where the highly respected social scientist Martin Knapp urges investment in novel dementia modifying drugs. Surprising bedfellows I would say.

    The messages, like those from Sir Michael and his mother’s story, are sound, though some use emotive words where more modest comment might be helpful.

    ‘A crisis we can’t ignore’

    ‘The numbers are staggering’

    The Barchester article tells us that their care homes are doing better in treating residents with dementia more thoughtfully and respectfully. As for general hospitals and all places where people are living, this is good news and hopefully is being demonstrated widely. Headlines usually feature poorer practice when things go badly wrong. As Sir Michael says we want to spread good practice – It requires more realistic funding. The matter of NHS Continuing Care funding is not raised within the pull-out. Perhaps too likely to ruffle the wrong feathers.

    Charles Alessi, from his Public Health England position, encourages people to know that they can reduce the chances of developing dementia by changing their life style. The advice is good. The measures suggested will improve health in general, especially cardiovascular risks. Best news is that the incidence of dementia has fallen in men – probably because people who have become better off are living healthier lives of the sort prescribed here https://www.newscientist.com/article/2084859-dementia-incidence-for-over-65s-has-fallen-drastically-in-uk-men/

    Marc Wortmann from Alzheimer’s disease International provides an easily assimilated review of the global distribution of dementia and responses generated as action plans by more countries since the UK G8 Summit in 2013. Something to be pleased about. Most plans have themes in common – raising awareness, timely diagnosis, support and improved care for individuals and families – at home and in care; and more investment in research. 

    Martin Knapp’s article is a masterpiece of succinctness which gathers and shares key facts about the prevalence, distribution and costs of dementia in the UK, including the balance between formal and unpaid family care. Hilda Hayo had contributed an argument for more Admiral Nurses in her half column. Martin Knapp considers the prospects if, or when, disease-modifying medicines are created which are more effective than those we have now. He estimates a delay of onset of 12 months would save the UK £1.5 billion per annum. He suggests that the same initiative might ‘shift the cost burden from formal to unpaid care, as a result of prolonging the period over which families can look after their loved ones at home.’

    I am not quite sure about all or any of that. There is a lack of focus on outcomes for individuals and families. Cost savings are, in the present climate, favoured arguments for those wishing to attract funds to their research.

    This sponsored pull-out is useful in bringing key facts to a wide audience in an easily read format. Linking it to family life and values by a trusted and loved celebrity will guarantee it will be read.

    There is just this suspicion that we are reading a disguised and polished grant proposal and I wish it had made something of the wonderful news that better off people in Cambridgeshire and Nottingham are now less likely to develop dementia – not because of a new drug – but presumably because they are following a healthier life style http://www.cam.ac.uk/research/news/new-cases-of-dementia-in-the-uk-fall-by-20-over-two-decades

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    I let Ian Greaves know that I had responded to an article in the BMJ which describes, from the vantage of academic service design, that there is need to bring services close to patients to achieve best use of resources and best outcomes. http://www.bmj.com/content/354/bmj.i4536

    My point was that the conclusions from design academia matches well with our experiences in Psychogeriatrics (aka Old Age Psychiatry) with development of social psychiatry teams working out from hospitals and into the community from the 1970s – Tom Arie and others leading the way. Lately the Gnosall model of a memory service within Primary Care has taken the model further, closer to the patient and family, since 2006.

    Ian’s response is to share with me the extraordinary range of new initiatives which are being woven into practice in Gnosall and other places: primary care is where it is all happening.

    Faced with austerity financial constraints and a shortage of trained professionals, necessity is doing what my mother told me it does – generating inventions.

    So Physician Assistants are back on an agenda which Ian (and I) were exploring almost 20 years ago. Nurses and Associate Nurses are being grown through apprenticeship schemes in primary care. People who have entered the workforce as Health Care Assistants or Domestic Workers are enabled to qualify as nurses: A workforce for a community from that community!

    Faced with the collapse of a Practice through retirement of the doctors, the response was to recruit Urgent Care Practitioners (e.g. http://www.careukhealthcare.com/healthcare-jobs/healthcare-professional-jobs/urgent-care-practitioner-paramedic-practitioner-north-east-essex-HC05641).

    In other situations Wellbeing Practitioners are employed to promote health and healthy life-styles http://www.iapt.nhs.uk/silo/files/psychological-wellbeing-practitioners--best-practice-guide.pdf

    Adrian O’Dowd has recently reviewed such initiatives in ‘Home run for integrated primary care?’ BMJ 2016: 353: i2922 doi: 10. 1136/bmj. I2922

    These developments are being explored in 70 centres and will be carefully controlled and evaluated. It is great to learn about new thinking and its application to counter gaps in the care system. It is frustrating that there is a mismatch between what the population needs and what the workforce and service structures prefer to do. New growth which matches and anticipates need is invigorating. Within this movement is a realisation that people are sensible and well educated and are keen to be helped to share responsibility for their own health – in its genesis and in coping when it breaks down in the face of pathology. First recourse for additional help will always be family. But there is a limit to what people can do without expert professional support and treatment.

    The essence of the Gnosall Memory Service is to bring Specialist Psychiatric Expertise into Primary Care – to work with GPs and other healthcare professionals to identify, treat and support people with dementia and related conditions and their families. The Elder Care Facilitator role works well because it is embedded in a competent professional team and the whole is known by and trusted by local people. This is not a question of ‘barefoot doctors’ out on their own and without highly qualified support and direction. It will be important that these new related models cultivate and nurture similar discipline and respect between their component parts.

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    Aducanumab 07 September 2016 | Comments (0)

    ‘Tantilising signs that new Alzheimer’s drug could benefit early stage patients’ says Ian Semple in the Guardian August 31st. Thank goodness for the pointers the Guardian provides, there are so many initiatives to follow and the daily paper offers an easy and reliable filter.

    There had been some inkling of this in conversations with colleagues in recent weeks – the costing of treatment and services for people with dementia have been fairly well mapped out – but there was/is the prospect of something new, different and potentially very expensive on the horizon.

    Well here it is. The paper published in Nature – perhaps the most prestigious of journals – 1st September 2016 (537) 50-56, has 28 authors from institutions in the USA and Switzerland. It describes a study which involved 165 people with a diagnosis of ‘prodromal or mild Alzheimer’s disease with brain A_beta pathology confirmed by molecular PET imaging. They were treated with monthly infusions containing Aducanumab which is a human monoclonal antibody that has been shown to cross the blood-brain barrier. In mice it had been shown to clear away A_beta aggregates (amyloid).

    The trial in these 165 people was designed initially to explore ‘safety, tolerability, pharmacokinetics and pharmacodynamics’ but the results reported here go further than this.

    PET images show impressive clearance of amyloid plaques after one year – the clearance being most emphatic with dosage of 10mgm kgm-1 but evident at 3mgm-1 and 6mgm-1

    Adverse effects appear to be minimal in comparison with placebo.

    But the greatest interest focusses on clinical measures of cognition: MMSE showing falls of 2.81 points for the placebo cohort (32) within the year – people receiving active infusions of Aducanumab had falls which were significantly less at p <0.05

    CDR-SB showed similarly less deterioration of cognition for those receiving active treatment through the year.

    This is all amazing. The amyloid hypothesis has been with us for many years and massive investments have been made world-wide seeking therapies based on this. My understanding has been that other projects have shown it is possible to clear away amyloid but this has not been associated with improved outcomes of cognition. It has seemed that all that investment had been misdirected. Here is a careful study from respected sources which breathes new life into the hypothesis and gives new hope for people who develop Alzheimer’s disease.

    The implications for modes of clinical investigation and treatment costs and ethics are hard to cope with.

    For people living with dementia now and for their families, this paper will arouse agonies of wondering that they were born too soon.

    For people anxious that their memory , or the memory and behaviour of a loved one, is deteriorating it will raise concerns even further and is likely to escalate demands for additional investigations, earlier and costlier. Findings from such investigations will not proceed to treatment beyond those already licensed because this one-off small study, reported beyond its original design ambitions, is at odds with previous investigations based on the same hypothesis and the findings need to be replicated in much bigger studies.

    Something else for us to think about.

    Today I am reading about nanoparticles in the brain – air pollution and its consequences.

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