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  • The Mental Health Five Year Forward Review was published February 2016. It addresses issues of mental health care for all age groups and makes a point of requiring access to services throughout the 24 hours of every day, 7 days per week throughout the year. Views from 20,000 people were taken into account in formulating the report and its recommendations. 

    We are told that analysis of these views encouraged that priority be given to: 

    • Promotion of good mental health
    • Prevention of problems arising from mental ill health
    • Improved access to high quality services
    • Greater choice of evidence based care

    The Mental Health Five Year Forward Review is informed by the Children and Young people’s Mental Health Task Force Report. ‘Future in Mind’ 2015. ‘Hidden in plain sight’ which was published by Age UK 2016, might be deemed the Old Age equivalent of ‘Future in Mind’ but was not, I believe specifically taken into account. 

    The main priorities are summarised as crisis care, physical health and outcomes, finances and the establishment of an Advisory Board to report to the Five Year Forward Review Board of the NHS. 

    In more detail

    1. Support people in mental health crises and prevent suicide
    2. Improve responses to mental and physical health needs
    3. Developmental and age appropriate services for children and young people
    4. Standards for access and care pathways
    5. Payment models. There is a table of 12 considerations
    6. Acute and secure care should be least restrictive and provided near to home. The over representation of BME and other disadvantaged groups in acute care should be reduced
    7. Inequalities in access and outcomes should be tackled
    8. Employment of people with mental health problems must be supported
    9. All activities should be transparent.
    10. The physical and mental health of the NHS workforce must be improved. 

    How can the needs of Older People at risk of, or actually experiencing mental distress be best served?

    Unhappily, the profile of older people portrayed commonly by the press and other media is that of an undesirable group: no one wants to be recognised as old, older people are lumped together as ‘a burden’ on society, ’blocking beds’ in NHS hospitals which might be better used for others. The recent revelation that pensioner households are financially better off than working families has unleashed an ill-informed vicious assault upon their good name and worth.

    www.resolutionfoundation.org/app/uploads/2017/02/IC-intra-gen.pdf

    www.theguardian.com/commentisfree/2017/feb/13/rich-pensioners-tax

    ‘Apocalypse No’ the economists R.G Evans et al demonstrated more than a decade ago that the image of old age as a ‘burden’ on society does not stand up to scrutiny.

    https://www.researchgate.net/publication/5059675_APOCALYPSE_NO_population_aging_and_the_future_of_health_care_systems

    The reality is that age itself does not predict dependency or cost to the rest of society. Extrapolations are used based on morbidity and dependency in past generations to predict falsely high costs for the present and future. Morbidity and dependency have been displaced from much of later life and are confined to the last few weeks and months before death. Use of general hospitals in particular by serial cohorts has reduced dramatically. Where costs have risen, it is arguable that this is driven more by fashion and inappropriate use of the most expensive ‘modern’ treatments, where attempts to cure are fruitless and a palliative approach is more humane and suitable.

    Words such as ‘increasing disproportionately’ conjure the spectre of a ‘grey peril’ enfolding and choking the nations. Not true and best avoided.

    A dispassionate review of the demography and epidemiology of late life and contributions of people as they enter and live through late life will always be a positive and engaging story.

    I have always been uneasy with the split in policies and strategy between the care of people functional mental disorders and those who have dementia or delirium. It is not very long ago that all serious mental disorder in late life was summed as ‘senile psychosis’. The differentiation between the disorders was a major advance from the 1950s onwards and allowed an optimistic, anticipatory culture to rise from the previous nihilism. These clinical discoveries and demonstrations laid the ground for the creation of special services which addressed the needs of older people with mental health problems, across the diagnostic spectrum including the spread between physical and mental health. These services were and are, age related and age appropriate, in the same way that special services for children and adolescents are accepted to be.

    It may be felt that this is an unacceptable message for people and for government departments, but I think this is the time and opportunity to make the point and to correct errors of recent years. There is everything to be said for bringing together expertise and services for older people, as for children and youngsters, across the full spectrum of mental disorders which are seen amongst them.

    Let us consider the main mental health problems of late life. Dementia and delirium can be dealt with briefly and with reference to the extensive and successful work done since the launch of the Dementia Strategy 2009. Depression, which is more common than dementia and often coexists with it, needs careful description together with notes about the suffering it causes, the costs which are associated with it, its adverse effects on comorbidities, but also its potential for recovery, with treatments.

    But let’s not forget the other major disorders including those with onset earlier in life which recur or persist. The misuse of substances is also common. Suicide is a success story in that suicide in later life is less common now that it was in this country, but the potential for older people to feel that they and the rest of the world will be better off for their death remains a serious reality. Awareness to the hazards and preparedness to act to make people safe and begin their therapy, are essentials of good practice.

    Throughout, the relationship between physical health and mental health and the significance of the social setting, culture, ethnicity, spirituality and faith should be rehearsed. 

    The priorities identified by 20,000 voices

    • Promotion of good mental health
    • Prevention of problems arising from mental ill health
    • Improved access to high quality services Greater choice of evidence based care

    Fit very well with how we would wish to promote good mental health, across the spectrum, for people as they get older.

    Of the ten more detailed points, some seem relevant:

    1. Support people in mental health crises and prevent suicide. Better to avoid crisis by services which promote heath and engagement before matters become too severe.
    2. Improve responses to mental and physical health needs. No argument. 
    3. Developmental and age appropriate services for children and young people. What is right for young people is equally right for older people. 
    4. Standards for access and care pathways. Standards for access for sure but I am uneasy with the vision of mechanistic pathways. Individuals are individual and the road to this place and forwards is unique. 
    5. Payment models. There is a table of 12 considerations
    6. Acute and secure care should be least restrictive and provided near to home. The over representation of BME and other disadvantaged groups in acute care should be reduced
    7. Inequalities in access and outcomes should be tackled
    8. Employment of people with mental health problems must be supported
    9. All activities should be transparent
    10. The physical and mental health of the NHS workforce must be improved. 

    Overall, adoption of the key areas used by the Dementia Strategy but now applied across the field of mental disorder of late life might be reasonable:

    • Improve knowledge and promotion of good mental health
    • Improve identification/diagnosis
    • Ensure effective treatment and follow up through appropriate services within healthcare, social care and other dimensions of society
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    13th February 2017 | By David Jolley

    Dementia Conversations have been occurring on the Isle of Wight and Bowdon Vale for 12 months and more. Those involved are convinced of their worth and there is considerable interest from a wider circle who have heard about them by word of mouth or from presentations at the 2016 Dementia Congress and other settings.

    ‘Conversations’ at East Cowes was established by the Reverend Veronica Brown and Barbara Stevens. Bowdon Vale is led by the Reverend Ros Watson and Doctor David Jolley. Both offer regular monthly meetings using church premises and lasting two hours, including a break for refreshments.

    There is an open agenda and the vision is of conversations which will go on and develop and change over time.

    They begin with frustration that despite the heightened profile of dementia and related conditions, the formal recognition and regular upgrading of a National Dementia Strategy since 2009, and the worthy efforts of The Alzheimer’s Society, Age UK, Dementia UK and other charitable bodies, people with dementia and their family carers, and interested members of the general public feel short changed.

    Dementia Conversations offer a local forum where people come together to share experiences, hopes and needs, from the practical to the spiritual.

    This is not just a variant of ‘Dementia Friendly Churches’, though encouraging and enabling churches to be friendly, respectful and understanding to people with dementia and their families is one thing we would always want to see. It is potentially wider and deeper than that.

    The fact that both pioneer Conversations are founded within a church must be significant. This has identified the likely attendees and given a clue that discussion of matters of faith or spirituality might be encompassed without embarrassment. But the meetings are not essentially faith based or part of a religious orthodoxy. People of any faith or none are welcome. People come because of shared unmet needs relating to life with dementia. They look for and find strength from themselves and each other. The ‘leaders’ are facilitators rather than teachers.

    We hope that many other localities will establish Dementia Conversation groups. If this happens there would be benefit in networks to share and support each other and perhaps to have an impact beyond each particular locality. But the main ambition is to be relevant in a locality, to know people and become known and trusted as a source of honest discussion and strength in our own resources.

    It seems right to have at least two facilitator leaders. 

    One or more with a local profile, as someone who knows the place and its people will be important.

    One or more with a mature knowledge of dementia and related conditions, and services will provide the foil to people’s uncertainties and thirst to know more, and to make best use of what support is already in place and to nudge the creation and development of more or different activities.

    Open minds and a willingness to learn from a non-judgemental perspective will give peace and the time and space to gain insights and find solutions which will be unique to every situation but may be of use to others. 

    Experience of being involved with groups of 10 t 20 people is an advantage. 

    A gentle, simple timetable which allows flexibility but does not foster chaos or the hijacking of time by individuals with articular gripes, makes best use of time and maintains good humour.

    Refreshments are important so that preparing them, displaying them and giving time for them to be enjoyed, along with less formal chat, makes the day. There are shared tasks of washing up, clearing up, leaving the place tidy and agreeing what will happen next. It is good to share what has happened with regulars who have not made it to this meeting so that a sense of belonging and being valued is sustained. These are tasks which people are often pleased to make their own.

    Reflection on the conversations, learning from them and integrating the local spectrum of interests and needs with national news of research and advances in learning as well as the politics of national and local service providers, keeps things fresh and on target. Awareness of other initiatives, to learn from them and to join in with some, all takes time and a degree of insider knowledge that comes with years of personal contact.

    One of our members, who has a longstanding diagnosis of Alzheimer’s disease said early that the basics are.

    ‘Be there and love me’

    This applies to leader facilitators as to all carers

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    The saga of Roger Curry has gripped the nation this week.

    Featured by Panorama http://www.bbc.co.uk/news/magazine-38769685 and taken up by the Guardian https://www.theguardian.com/uk-news/2017/jan/30/wife-son-dumped-roger-curry-dementia-uk-car-park, this is the story of a 76 year old man who was discovered, confused and lost in Hereford in November 2015. He was made safe by paramedics and found accommodation in a Care Home. As far as I understand it, he was physically well and well-nourished but had a dense memory impairment and a diagnosis of dementia was made. He gave his name but could not say where he came from. He has an American accent.

    The care staff took to him and he accepted his new life with no distress. The authorities, including the police explored all the usual channels in attempts to determine who he was and where he came from and who might be responsible for his care. There were no descriptions of missing persons to match him in the UK, nor in the USA of Canada.

    His identity was eventually discovered through links which started with the police but required a local television company and then the use of social media before contact was made by someone who had known Earl Roger Curry at school in the USA. They still had a year class photograph of a teenager who had that name and looked like the older man now in care in England. The details of the story revealed by the persistence of Darragh MacIntyre are extraordinary but give clues of progressive breakdown within a family which had rifts over many years and fell into crisis at Roger and his wife became elderly and infirm.

    How that could lead to a decision to resolve their problems by exporting him to England and abandoning him to the care of strangers in another country is baffling.

    The news reports declare that ‘granny dumping’ is a well-known phenomenon in the USA. This is a dreadful term which shows no respect for the individuals who present to services in this way and the complexity of differing considerations which may lead to a common pathway. Articles from the USA in the 1990s estimated that thousands of older people were being delivered to hospitals by families or other carers who just could not cope with their needs.

    A news item in the BMJ 1992 vol 34. 333 to 334 discussed the situation in the USA and drew attention to a study by The Academy of Emergency Care Physicians which identified older people left in emergency rooms. They blamed unaffordable costs of care.

    Judy Jones, writing in the BMJ in June 1993, could see similar tensions in the UK.

    Doctors fear that the virtual disappearance of NHS elderly care beds over the past decade combined with a gradual tightening of social security rules has pitched many frail elderly people and their relatives into a middle-class poverty trap.

    Strict limits on the amount of state support for care in private residential or nursing homes has led to the widespread 'bed-blocking' by elderly patients on acute NHS wards. Increasingly, hospitals are unable to discharge such patients because there is nowhere else for them to go. Relatives insist they can neither care for them at home nor meet the bills for private nursing home care.

    Such words are often repeated today as the cost of care has risen and the availability of care via social services has become more and more severely rationed.

    But these are desperate straits within an economy. The Roger Curry scenario is of an order beyond this for it sees an individual ejected from his own country to become the anonymous recipient of care in another country and culture.

    We encountered a similar situation in South Manchester in the early 1980s. Asked to see an elderly man at his sister’s flat in Whalley Range we were surprised to find that he spoke with a marked Southern drawl and believed himself to be living in Shenandoah. Not really so surprising because he had lived for over 70 years in the USA and had run a grocery in Shenandoah into his seventies.

    He and his half-sister had lived in Newcastle upon Tyne but were separated as youngsters, Douglas moving to America with their father, Ellen staying at home with their mother. Ellen moved to Manchester with her mother and worked here in a department store. They kept contact with Douglas by Christmas cards and occasional letters but never met. When her mother died, Ellen continued this tradition but latterly had received nothing in response. Soon after Christmas 1982 Ellen received an airmail message from people she did not know but who explained they were nieces of Douglas. They were arranging for Douglas to fly to Manchester and asked Ellen to meet him. The details of the flight and arrival time were given and they included a recent photograph so that he could be identified.

    Ellen was puzzled and a little alarmed. She had never been to the airport, did not have transport and herself was already old and frail and barely coping. Never the less she kept the appointment, travelling to the airport by taxi. Douglas was charming but entirely muddled. He had been attended by staff through the flight but really had no idea what was happening nor where he was going. He probably did not recognise Ellen but she knew him from the photograph and he was content to be welcomed by her and to go along with her.

    Her phrasing, oft repeated was

    ‘Under the circumstances, I felt there was nothing to be done but to look after him’.

    So there she was with her long lost, muddled half-brother in her small, cramped rented flat. Another mouth to feed and in need of a considerable amount of care. She found him to be incontinent of urine, needing help to dress, undress and shave. A night he would get up and wander the flat, taking off his clothes and urinating in corners. He was sometimes resistive when she came to wash him and give him clean dry clothes.

    For a while she cared for him at home with thrice weekly attendance at our Day Hospital. Care was arranged at home too and there was sensitive support from our Social Worker and Community Nurses but Ellen became very tired. Douglas became a resident of our long stay ward, a place which knew him from his Day Hospital attendances, where he had a sense of familiarity and where Ellen knew and trusted us, and all our staff knew her and respected her. There was no question of his being returned to America.

    There was no one to look after him. It was not an issue of money so much as lack of anyone who was close enough to him to offer the sort of attention and affection which came from Ellen, albeit lately as a visitor rather than direct carer. Ellen and our Social Worker researched finances and Douglas’ pension became available but could not contribute directly to payment for his care. He lived out his life in this situation.

    So Roger Curry’s story is unique but we have seen something similar in the past and no doubt others can give their versions of these unusual last days.

    It seemed to us that Douglas’ best interests were met by accepting him in this country right through to the end. Darragh MacIntyre reflected that he was not sure the rediscovery of Roger Curry’s identity and subsequent return to USA for care worked out well for him.

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    Talking senses 30 January 2017 | Comments (0)

    30th January 2017 | By David Jolley

    This week I met with Annie who is a researcher within the SENSE cog project which is being conducted with nearly £7m Euro European funding in Cyprus, France, Greece, Norway, Holland, Germany and the UK (Manchester]www.micra.manchester.ac.uk/research/projects-and-groups/sense-cog-project/

    http://cordis.europa.eu/project/rcn/200473_en.html

    We are used to seeing dementia existing along with other pathologies, often several at a time and each pathology contributing its own limitations and challenges but also magnifying difficulties by their interactions. Not being able to see, not being able to hear, or lacking full hearing and sight together is challenging and the more so when cognition begins to decline and a progressive dementia takes hold. This project is designed to discover more about the distribution of these multiple disadvantages across European countries, the special needs which arise from them and ways to help.

    We meet individuals who have been deaf for many years or registered blind for most of their lives. They and their families are likely to belong to groups which know about the difficulties and uniqueness of life lacking a dimension of perception and the communication associated with it. This may be strength which will sustain them.

    More commonly, loss of hearing or loss of sight comes with advancing years so that neither the individual nor their family are used to it. Never the less such losses are so common in late life that their coming may not be entirely a surprise.

    Loss of cognition undermines competence and confidence. This is magnified by the removal of another limb which might provide compensatory reassurance. So it is that these combination losses release symptoms of anxiety, depression and sensitivity, even paranoia. Getting close to reduce the destructive arousal is key to all we try to do.

    Work with families and with others who are known and trusted and can speak the language is the trusted plank of successful interventions.    

    The study protocol talks of screening. This suggests we should be looking for instances of these comorbidities ahead of their presentation to routine services. I am not sure there will be great enthusiasm for this. Iliffe and Manthorpe’s series of articles in the Journal of Dementia Care has raised the question whether ‘screening’ for dementia is a good use of resources. Indeed Alistair Burns would agree with them but is in favour of enhanced case finding. That seems to be a wise position. It is one I am comfortable with and would be right for the comorbidity exercise.

    There is much emphasis too, in the outline of the project, on a search for adapted tools to facilitate assessments, ‘the development of a composite e-screen for sensory, cognitive and mental functioning’ and ‘a clinical trial of a newly developed ‘sensory support’ intervention’. I am not quite sure what any of that will look like, so there is much to be learned by dinosaurs like me.

    In my experience the most powerful tool in understanding and diagnosis is a competent history taken from the patient and from others. This, combined with the use of established short measures of cognition, interpreted to take account sensory difficulties, and supplemented where indicated by additional investigations, will give answers. It also serves to establish a relationship between the clinician and the patient and family, and sets the scene for realistic interventions and plans for the future.

    We talked about the similarities and differences between life changed by a sensory deficit such as blindness and life changing with dementia. John Hull’s ‘Touching the Rock’ is my source for knowing about blindness from the inside. I do not have a similar resource for hearing loss from the inside, but will be grateful for any pointers. Robert Davis’s ‘My Journey into Alzheimer’s Disease’ remains the written account which I share with others and which is closest to my own perceptions after fifty years of living alongside the condition. Tony Husband’s ‘Take Care Son’ and the film ‘Iris’ are moving and informative and also come close.

    Best help for individuals and families experiencing the multidimensional challenges of cognitive loss and sensory deficits, almost certainly complicated further by other concurrent pathologies, will come from the application of best practice by specialist services translated and provided within primary care. Primary care because this is where the individual and family are known and where all the components and changes will be understood, interpreted and life allowed to continue with most natural support and least restrictions. Which brings us back, as often, to the Gnosall model www.gnosallsurgery.co.uk/clinics-and-services.aspx?t=5

    So we look forward to learning more from this ambitious study of an important phenomenon.

     

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