More Information, Less Accessibility
Mike Marshall MIHM, DHSM – IAH Trustee

I have probably driven my Trustee colleagues to distraction over completing my first ever blog for the West Midlands Institute of Ageing and Health. It was due in January 2018 and I was ill at the time. Since then holidays, retired life and procrastination seem to have got in the way. It’s always been the same: as a Health and Social Care practitioner / Manager/ Commissioner - reports finished at the deadline and funding bids submitted on the day (the last of which gained £2.3 million from the Government!).
 
Well, here I am finally at the keyboard, relatively fit and able, unlike many of the older people we seek to support through the Institute’s work.
I can travel to my GP, access hospital appointments (unfortunately not in my home town of Bromsgrove in the actual community hospital I commissioned) but in Redditch (or Kidderminster) some 7 miles away.
 
Should I have experienced a stroke the journey would be to Evesham, 48 miles round-trip with no direct bus route. Trains? Forget it. Older relative, no car? – no chance.

The success of modern medicine has resulted in many people surviving strokes, heart attacks and cancer when previously they would have died prematurely. This has resulted in an ageing population.  With this changing demographic comes the challenge of how to achieve healthy ageing.  Sadly many older people are not achieving this, and the numbers of older people living with frailty are rising.  People living with frailty often have multiple chronic illnesses, weak muscles, poor mobility, exhaustion and are dependent on others for their care (Clegg, 2013).  They are the main users of heath and social care and have high mortality (Shamliyan, 2013).  Decisions around care choices are often complex, particularly where patients have dementia or are coming to the end of life.  Choices must take into account patient preferences as well as what is achievable and sensible to maintain a good quality of life. 

Sue Lillyman, IAH Trustee

Although there is evidence of good care and some equality for older people we still hear accounts in the media about how they continue to experience social exclusion, marginalisation and oppression at an international level. These are often, (according to Duffy et al 2012), due to the negative stereotypical views of older people that are prevalent in society. Dabove in 2013 called for an international convention on human rights for older people. Whilst she questions whether older people should have different rights she suggests that there is a need for a convention with more consistence to the tools and institutions, principles, rules laws and judicial practices that are accessed and available to the older person. She highlights the issues of capacity, empowerment, freedom, civil rights, integrity and health, abuse, property rights, legal issues, social rights and security and access to justice. In October this year the All Parliamentary Group for Ageing and Older People in the UK launched a major new inquiry into human rights of older people. This aims to improve the protection of rights of older people with an international legally binding agreement addressing the issues raised above. These changes have already been achieved for people with disabilities through the Convention on the Rights of People with Disabilities and for children with a further Convention on the Rights of the Child, it is now timely for there to be an additional one for older people.

Lesley Bainbridge, Lead Nurse Care Home Vanguard Programme, Newcastle Gateshead Clinical Commissioning Group,

Watching the Invictus Games last week prompted me to draw parallels between sudden onset disability and that associated with old age.    While watching I was reminded of two patients I’d cared for over a decade ago whose problems in old age were attributed to the trauma of war.   Working as a nurse specialist for older people in a community intermediate care team both men were referred by their GPs for further assessment.  

What led to the ‘diagnosis’ of war trauma was comprehensive geriatric assessment [CGA] and the fact that I worked in a multidisciplinary [MDT] team that meant my patients were speedily referred to others when necessary.  CGA is the best evidence base we have for providing care for older people with complex needs and it is well accepted that those that have access to MDTs do best.   

CGA considers the whole person, covering 5 domains of their life including medical, social, mental health, environmental and functional.   It allows us to gather information about usual and present state to identify problems and draw up a care plan to address each issue in turn in order to optimise overall health and wellbeing.  

Death and preferred end of life care can be a difficult discussion for any individual living with terminal illness. However, when that conversation is with someone diagnosed with dementia – and therefore, may not have the mental capacity to plan and organise for the future – it can become a lot more challenging.

Advanced Care Planning (ACP) is instrumental in ensuring a patient with dementia – and any other individual living with a life-limiting illness – has the right care and support in place to enable them to live their last days in peace and dignity. Yet, despite its obvious benefits, the responsibility of ACP doesn’t directly lie with one specific healthcare professional. Instead, it is up to any healthcare professional to raise the conversation when they think it is most appropriate for the individual.

‘Sorrow that finds no vent in tears may make other organs weep’

Sir Henry Maudsley, 1835 – 1918

 According to the British Pain Society, almost 10 million Britons suffer pain almost daily resulting in a major impact on their quality of life and more days off work at a cost estimated at around £5billion per annum, with around 20% of all new consultations involving pain. Long term pain is both disabling and distressing. The story of Gill Pharoah, a former palliative care nurse who passed away at the age of 75 at an assisted dying clinic in Switzerland in 2015 with chronic back pain raises important questions about euthanasia and the traumas that can come with old age not just in the context of terminal illness, but also for conditions which can ruin people’s quality of life. It also raises important questions about ageism and how society values elderly people.

Sue Lillyman, IAH Trustee

With dementia noted as the leading cause of deaths in England and Wales in 2015 (Office of National Statistics 2016) and with approximately 860,000 people living with dementia, which is still estimated to rise to 1,142,677 by 2025 (Alzheimer’s Society 2014) there is a need for people to discuss, prepare and provide optimal care for people with dementia at the end of life. Everyone has a fundamental right to die with dignity, be safe and protected from harm (DoH 2013) but, as noted by some researchers, the traditional palliative care model used for many other long-term conditions does not fit people dying with, and from, dementia (Bloomer et al 2011). Therefore, it is timely that we review specific needs for this group including behavioural concerns, discussions in relation to preparing for end of life, difficulty re placement of care, carer burden and over burdensome and/or under treatment in our discussions and education (Torke et al 2010).

Peter Mayer MA FRCP

There are many opportunities to be involved in improving patient services and developing the future in health and social care and research within many countries and this is central policy in the UK. Any locality will have many forums in commissioning primary and secondary care as well as national and local government groups.

Dawne Garrett, Professional Lead - Older People and Dementia Care, Royal College of Nursing.

Voltaire tells us we are all formed of frailty and error. Certainly we all have a picture of frailty, perhaps an old thin, small, stooped and wrinkled lady, slow of step, quiet of voice and without strength.

In terms of the clinical label of frailty this is untrue. Frailty is phenotype; not a normal part of ageing, but a long term condition. If frailty was about age then all older people would be frail and clearly they are not.