A Sandwich Too Many?

A Sandwich Too Many?

Early in March the public were asked to support an NHS Change Day and through the media people stated what they would do to improve health care.   There are things that the public can do and that can help to reduce the number of appointments that are wasted through non-attendance at hospitals, GP surgeries and other health-related services.  My thoughts also went to another area where waste is evident. 

There are, for instance, sometimes trays of sandwiches, platters of fruit and Danish pastries all temptingly displayed.  How many health and social care events have you attended in the last year where you have been offered lunches for which you have not paid and which have been paid for from ever decreasing budgets?  At national and local level, in both statutory health and social care settings and in the voluntary sectors, we have come to expect refreshment, not just tea, coffee, juice, water and biscuits but lunch, too.   It has become a way of life that we take for granted.

Refreshments at events and meetings are seldom, if ever, are paid for by delegates and we seldom concern ourselves with who pays for this food and what happens to all that is left over.  Occasionally people may take left-over sandwiches for a long journey homeward.   More often we leave the food for the events or meeting organisers to clear away, and we see it tipped into large black plastic bin liners, producing more environmental waste.  

And yet, elsewhere, people are hungry and thirsty.   The number of food banks opening up increases week on week. The number of lonely older people increases week on week.  Health and safety regulations forbid the passing of food on to people who are hungry, thirsty and lonely in many instances and it cannot be sold and the income used to provide much needed services.

We have become a wasteful world; most of us know that and feel there is little we can do about it. What a mindless and self-centred state we have reached in terms of our expectations.  Many people have grown up in recent years with an expectation they will be fed when in attendance at meetings.  Refreshments come from these cash poor statutory and voluntary sector budgets and seldom, if ever, is this waste identified. 

Food brings with it a feel-good factor, a scarce 'freebie' in health and social care organisations that can rarely afford to reward staff but free hospitality comes with a price tag, seldom recorded.    If that money were calculated, it could provide services currently deemed too costly.  For example, there could be more local training for volunteers to visit lonely older people, money would be available to support more social activity for people in residential settings who are bored. 

This is just one area of waste within our health and social care budgets and one reason why it often goes unacknowledged is because these organisations think of finance in terms of thousands or millions of pounds rather than how small savings made can make a huge difference.   Individual pounds add up, not just in accounts under the heading of ‘hospitality’ but around people's waistlines.

Ironically, as this blog was about to be posted, there was a health and social care event where the lunch-time sandwiches ran out! 

Ann Macfarlane OBE

March 2014

Euthanasia or Assisted Dying (amendment)

Euthanasia or Assisted Dying

This is an amendment to the article on assisted dying posted yesterday.   It states that Belgium law enables children of twelve, together with their parents, legal guardians and doctors, to have assistance to take their life if that is their decision  It is far more serious as there is no age limit in Belgium.  It is in Holland that the age limit is twelve years and over.  

Euthanasia or Assisted Dying

Euthanasia or Assisted Dying

As a child I was issued with more than one death sentence.  The most memorable and traumatic came at the age of six.  Not having seen my parents for many months, as visitors were not allowed in those days, the Ward Sister stood at the end of my bed and pronounced. 'You are going to die.  Your Mummy and Daddy are coming to see you but you mustn't tell them because you will upset them.  They're coming at 2 o'clock.'  I was all too aware of the ward clock and the time I had to try and digest what she had said before they arrived.  On arrival, Sister produced two chairs for my visitors.   Before she sat down, Mother leaned over me, kissed me and put a colouring book and box of pencils on the sheet.  I clearly remember thinking, 'I should tell her to take them home because I won't be able to use them.' but I kept that thought to myself because I didn't want to upset her and Sister would be angry with me.  She was a formidable force to be reckoned with as I had learned on other occasions. 

Belgium has just passed a law that enables children aged twelve and over, together with parents and professional individuals to take the decision to terminate life.  'Euthanasia'' or the more familiar phrase 'assisted dying,' means that children deemed terminally ill and/or disabled and perceived as having little chance of an acceptable quality of life can be killed.  Anybody seeing me in the condition I was in between the ages of four and eighteen years might also have come to that conclusion. 

Despite a growing number of countries debating the pros and cons of the issue, there is public inertia when it comes to refuting the passing of these laws and, in some countries extending criteria to cover children. Instead of being front page news euthanasia is buried deep inside the national newspapers.  Maybe people feel threatened by the fact they are continually confronted with news of diminishing resources so people who are able, currently support themselves by operating in survival mode. There may be an underlying fear that the more people who need health and social care services the greater will be the added strain on what may be perceived as a dwindling economy and thus further diminish the quality of their lives.  Could this be the cause of the inertia or disinterest?

I am well into my seventies.  I have had a quality later life having worked, travelled, enjoyed family and Church life and life in general.  I thank God that those people around me in my early years saw fit to try and give me a reasonable quality of life, despite serious illness and impairment.  Not all felt I had a life worth living and that l learned second-hand in medical settings, but some did, and I am grateful that they took that approach even in  those earlier and often darker times.  Members of the public have said to me on occasions, 'I don't know how you can live like that, I couldn't stand it,' or words to that effect.  Maybe I had less of the struggle that some youngsters have today through advanced medical and surgical treatments, but mistakes are made. Decisions that take a life cannot be retracted. While it is a highly emotive issue, and I in no way wish to minimise or underestimate the complex and confusing circumstances in which families are situated and the often agonising decisions to be made by them and those in health and social care settings, killing is not the answer.  Irrespective of all the wrestling and soul-searching, a life terminated cannot be reversed. 

Life-threatening decisions are often taken because people experience extreme pain. It is not the only issue, but there are many settings in which the knowledge, skills, and equipment to deal with pain are lacking or missing.  I do have considerable experience of intractable pain levels and I have been fortunate to eventually meet with the people who do have the knowledge, skills and experience.

  
While people have the right to make choices and decisions, many decisions are made and taken without the relevant knowledge and information, with people available who have the lived and professional experience.  There is a history of taking the lives of ill and disabled children and adults whom others have deemed fit only for experiment and ultimately untimely death. The life deemed not worth living might turn out to be a life very much worth living.  I, and others, have lived to prove it.

Ann Macfarlane
February 2014

Waiting at Waterloo Station

Sitting in a cafe on Waterloo Station watching the people and pondering on each of their final destinations is like a miracle for me but probably not for the rush hour crowd.  I still marvel that I am a part of this daily scene, made somewhat busier because of a tube strike. 
I owe it to disabled people, some known to me, others strangers and yet united as one by those things that all disabled people have experienced. Discrimination, oppression and unequal treatment all of which continue and persist brings to the fore an emotional thankfulness and gratitude towards those who fought for disabled peoples' freedom to move around on public transport.   Legislation that disabled people worked on, together with policies which we helped to create and the resulting access, were achieved and have improved the lives of all people.  Public transport is not perfect but it is a far cry from little or no access to buses, limited access to mini-cabs and taxis, and wheelchair users travelling in guards vans with chickens, fish and various unsavoury objects.  Airlines, too, have improved access for disabled people.

To experience lying in NHS beds and receiving their 'hospitality' for almost a quarter of a century can leave one 'flattened' and feeling worthless, but to be sitting here on a freezing cold February morning is a far cry from those days.. 
As I wait for the half-mile queue for taxis to subside and before I venture out again to assess if the queue has receded or lengthened, I know that when I reach the front of the queue I will have access and be able to get to my work destination like hundreds of other taxi-users today.  I would not have come to London on a tube strike day for a 'jolly.'  But still I am glad to be here because all those years ago as I lay waiting for the next surgical procedure It never occurred to me that I would be part of the ordinariness of life.  

What a gift!

Ann Macfarlane
February 2014

End of Life Care and People with Long Term Conditions

Cancer, as an illness, may result in an illness and an impairment or, as it is more readily referred to, a disability.    It may be the case that a person who has been disabled for years acquires a diagnosis of cancer that manifests itself as an illness.  Many disabled people who have lived with impairment over many years, may require additional support at the end of life.  Professional people, particularly doctors, nurses and para-medics, must be able to differentiate between the two.  A disabled person, nearing the end of their life, needs people to understand those differences so that when they are dying they know they will still have as much control as they wish to retain. People who have lived with impairment have usually taken control of their situation. They will have been in a position where they have made choices and taken varying degrees of responsibility as any other human being. They have lived life, had dreams, ambitions, made decisions and achieved their potential just as anybody hopes to do.  When illness takes hold their situation changes yet again; they may find that they are spending time at their surgery or local hospital as illness leads to deterioration in health but not in impairment.  That is where life can then be compromised for a disabled person as they may wish to continue taking control while being supported by another group of people who are trained to take control.  

Doctors and nurses, trained in end of life care, may provide positive support in a disabled persons’ life but, equally, it may be a hugely negative challenge for a disabled person when they least need that challenge.  It is an area that requires attention in terms of facilities and services if a disabled person is to have a good death.  As an example of the kind of understanding required, it can be an anathema for a disabled person who wants to die at home to take delivery of a hospital designed bed.  Many disabled people have negative memories of being labelled a patient , admitted to a hospital ward and into a hospital bed.    At this stressful time there may also be a relative in the picture who needs support and who wants to provide support but if they,  too, are a person who likes to take control, illness can compound the situation for the disabled person.  If disabled people have personal assistants who have worked with them, they can often be an ally.  An independent advocate may provide support so that a disabled person in this position can have their wishes carried through.  

Training for professional people, appropriate to the issue of end of life care for people with long term conditions experiencing a terminal diagnosis, needs to be addressed.  Ideally this type of training will be delivered by disabled trainers who are fully conversant with end of life issues. 

Too Slow, Too Old and a Burden

Too Slow, Too Old and a Burden 

The blog below was written after a day of smiling at people in the street and either the response was one of people staring back with a deadpan look or people were in their 'island' state:  earphones in, iPod in pocket, texting with one hand and trying to take a photo on their iPad either of themselves or somebody or something else.  If only they could take stock of what they are doing.  Taking this ‘picture’ and writing down the experience was a way of forming another ‘picture!’

The title reflects an image full of negativity, of people intellectually, emotionally and physically challenged often feeling useless and worthless.  This image is how it appears the world views older people against a fast-moving, younger, more energetic people pushed to their limits with ever-changing, ever more complex electrical and technological advancements.  It is a world where all ages from cradle to grave are expected to compete and overtake so that those who are slower and older become overtaken, and labelled a burden.  Older people are classed as economically demanding and a drain on ever-decreasing resources, mainly related to professional, voluntary and financial services. Those slower, older and burdensome individuals are shown by governments, media outlets, and by service commissioners and providers as a massive homogenous 'problem.'  It is not surprising that those slower, older and burdensome people become seen as 'objects' to be taken control of and kept waiting or moved about in the hope that while decisions are being made that somehow those 'objects' will be shelved, lost sight of or disappear in transit. 

As not so slow older people struggle to support much slower, much older people, often intellectually, emotionally and physically slower, technology continues to advance.    New road and rail initiatives are being designed to take ever greater numbers of people faster through our countryside so that they can work longer hours with supposedly higher and faster through-puts and outcomes.  Perhaps they will not survive long enough to become older , slower people. 

Yet, slower, older and so-called 'burdensome' people take the strain in grand parenting responsibilities, remain in work teaching younger people the intricacies of their profession, use their retirement years to contribute to voluntary sector initiatives and add spending power to the economic life of this country.  So much for being slower, older and a burden.  'Older' doesn't necessarily mean slower and a burden and even those who are slower can, when actively listened to, valued, have self-esteem and basic needs adequately met, experience wellbeing, and enjoy fulfilling and productive lives.  I know because I come into that group of slower, older people but no-one is allowed to call me a burden!

Ann Macfarlane
November 2013

Poem - "Support as me"

Support me as ‘Me’

Please tell me I'm wrong, that's not how it is,
I'll not be abused, patronised or called 'dear,'
Be put to bed after tea with nothing to do,
Please tell me right now there is nothing to fear.

My room will have en suite with sockets galore
I'll have privacy, dignity, choices, a key,
Staff who are trained, who listen, respond
Leave me in control and support me as ‘me.’

Ann Macfarlane
November 2013