Quality and Satisfaction in the Ordinariness of Daily Living

Quality and Satisfaction in the Ordinariness of Daily Living

As an Exert by Experience for the Care Quality Commission, I am in the privileged position of being able to communicate with people who live and work in residential settings.  I particularly appreciate residents who are willing to talk with me about their experience of life before and after a crisis and those people whose long-term conditions have progressed through into older age.   Residents are pleased to have a visitor, they enjoy talking about their home, the community in which they lived and the work they accomplished in bringing up a family and going out to work.  Residents are far more likely to become alert and engaged when talking about the past and those stories are always full of interest.  I have listened to people telling me how they juggled three cleaning jobs in order to feed their family.  Sitting in an adjacent armchair was a resident who said with pride, 'I worked in 10 Downing Street.'  My only regret is the limited time I can give to each person.  When it comes to the point in discussion when they tell me how they came to live in a residential setting and what it is like day-to-day, they often become less communicative, more wistful, sad and occasionally angry.  This change in mood and expression is understandable when one recognises the huge losses people have experienced in what is often a short space of time.  Examples are that people wanted to return home and did not choose the setting in which they now live, a relative or friend made the choice.  Often there was no opportunity to return home to take a last look and decide on what possessions they might like to have around them.   Usually a relative or solicitor dealt with finance as their home was sold to pay the fees.  It is not unusual for their partner to become ill or die while they themselves are in hospital and too poorly or not able to attend the funeral.  Some people do not even know their partner is ill or has died.  ‘We haven’t told them because it will upset them.’  Of course it will probably deeply upset them when they discover the news and then they sit with endless time to dwell on what might have been, their own declining health and the grief and confusion that becomes more profound with the agony of not knowing.  Health can quickly deteriorate when hope has gone, particularly the hope of returning home.  

I clearly remember talking with two women who had become friends on arrival in the long-term setting and shared a double room.  They told me that friends had gone to each of their homes and packed all their belongings in suitcases.  The Home’s Manager allowed them to keep these belongings that were placed high up on top of cupboards.  Once a year the cases were taken down and for one day the women reminisced over their beloved possessions.  They told me that each year they lost a little more of themselves as they discarded some of their possessions. 

So what is meant by quality and satisfaction in the ordinariness of daily life?  So often I hear that a coach outing has been arranged, sometimes twice a year, whereby residents are taken to the coast or countryside for a day.  Each week there are exercise and music sessions and the inevitable hair dressing and nail cutting and polishing, both personal care tasks.  Fundamental to most peoples’ lives is to ‘give and take.’  Satisfaction in day-to-day activity is for the ordinary everyday happenings as well as for those larger, pleasurable for some activities.  Risk-taking rules and restrictions are often incorrectly interpreted and leaves the majority of people sitting in an armchair, giving up on making sense of two televisions tuned in to two different channels, providing incoherent messages, a radio blaring out music in a corner of the same room, and the clatter of crockery and chatter that closes the mind and eyes in sleep.  Dozing and sleeping are much easier to achieve in an over-heated environment and with a cacophony of noise.   These scenarios are a recipe that leads to residents saying to me, ‘I’m useless, I can’t do anything, there’s no point in living.’  When a staff member comes and, amid the heat and noise, says, ‘Are you alright, Mabel, would you like a drink?’ Mabel mumbles and the staff member turns to the next person.   This is not a criticism of staff, it is the system and procedures that allows little or no time for meaningful conversations, little time to support people to accomplish the ‘ordinary’ that most of us do every day, and no way in which to provide and support residents on a ‘one-to-one’ basis.  Most of what goes on denies residents their rights, often residents and staff not understanding what those rights are and mean. 

Most of us have hobbies, people we like to keep in contact with and share our lives, local places that we like to visit, and ordinary home-making tasks.  One resident said, ‘If only someone would help me turn my underwear drawer out and tidy it.  I’d like to shop for some new clothes.’      Another resident said, ‘I’ve lost contact with friends. I’d like to write some letters and cards, remember peoples’ birthdays, make a phone call, but I don’t know where my address book is and I can’t get out to choose cards.  People just don’t have time to do these things, staff are too busy and I seldom have visitors.’

As a nation we have become too bureaucratic, focused on filling in forms, making notes and often caught in a cycle of paperwork and meetings, most of which are unnecessary and reduces quality of life to endless emptiness.   This blog will, I hope, provoke challenge, stimulate and give opportunities for residents to talk about what they would like to happen in response to issues raised.   This would be useful as it might get providers of residential services talking to each other.  There is a real fear that business will suffer if other providers enter their premises.   ‘Activity’ officers are often isolated and untrained and have no part in in networking with neighbouring activity officers. They are often part-time and have either no budget or money earmarked for supporting fifty residents, many with severe memory loss and frustration, labelled ‘challenging behaviour.’  The question is, ‘Why do people develop challenging behaviour?    One resident who was labelled as having severe dementia, whom I met twice within nine months, told me in answer to my question, ‘What would you like to be doing right now?’ responded, ‘I’d like to live a little.’  This resident was in bed in exactly the same position I had met him nine months earlier.

I am so appreciative of the hundreds of conversations I have had with people in residential settings and this last example, I believe, says it all.  It is about the quality and satisfaction that can be experienced in the ordinariness of daily living.

Ann Macfarlane OBE

July 2015

 

Cash for Care: different language; different entitlements?

Cash for Care:  Changing language; different entitlements?

What began as a simple concept years ago has changed into a nightmare for statutory health and social care budget holders, commissioners, operational staff and people who may need or who already use health and social care services.  The concept focused on ‘cash for care’ that could be controlled by people who needed support to take control of life rather than have their care arranged by their adult social care department or an agency.  The term used in the 1996 Community Care (Direct Payments) Act was ‘direct payment.’  Now, years later, there are four terms to describe payments that can be made to an individual.  They are: ‘direct payments,’ ‘personal budgets,’ ‘personal health budgets’ and ‘continuing health care.’

Attached to each term are different community and health care assessment forms each with different criteria that, if eligible under the Act, entitle a person who needs support to various ways in which to have their needs met.  They can either have a cash payment, or a mixture of cash from the adult social care budget, or cash and services, or even money from a pooled health and social care budget or separate funding from health and social care and direct services and equipment.  They may also be eligible for funding from other agencies, such as education or access to work.  Alongside the community care assessment form is a financial assessment form to be filled in.  These forms are complex, difficult to understand, and often require a degree in mathematics!   Each authority has a different set of disability related expenses that can be disregarded and many local authorities expect service users to pay the full 100 per cent cost of their care package.

Local authority and health boards, commissioners and operational staff  struggle to provide this complex information to the public and to service users and in trying to deliver care packages that encompass ‘cash for care,’ generally find it too daunting.  It is easier for care managers and other professional people to offer traditional services, reducing in number with decreased statutory funding, as these are few and readily explained and coded under the plethora of budget headings generated by health and local authorities.

If you have got this far and are confused, don’t think it is any intellectual lack on your part, the paperwork attached to acquiring cash for care is confusing.  It stops people entering the health and social care systems and leaves people who require support feeling depressed, lacking self-worth and with little or no idea of entitlements they might expect within these systems.   The terminology used to describe entitlements amount to the same thing, ‘cash for care.’  What has happened is that by making the language difficult to penetrate, a whole industry has built up around it, creating an increase in senior management and a vast amount of unnecessary bureaucracy and waste.  The straightforward answer is; one pot of money, one integrated set of criteria for a self-and community care assessment, one financial assessment form simply explained or done away with as the vast resources needed to generate income could be used to create more integrated care packages.  

Finally, with the centrally Government -funded Independent Living Fund being phased out in the next few months and the money, non-ring-fenced, being transferred to local authorities, it is not difficult to imagine the difficulties that will be experienced by existing uses of that Fund.

What is happening in Manchester also cannot be ignored.  What we need to be vigilant about is the lives of service uses becoming even more medicalised than they already are in many situations.

Ann Macfarlane

February 2015

‘Austerity’ strikes at the heart of Social Care: What contributes to this ‘austerity’ from a service user perspective?

Introduction

Contributing factors to this austerity include negative language, the lack of collective service user voices, placing people who require services in ‘silos,’ meetings by professionals each with their own agendas, power tensions, medical model training, restricted funding and ‘silo’ funding streams and institutional oppression to name but some.  An exploration of these issues reveals a very large ‘elephant’ that virtually defies edification, deconstruction and rebirth. 

Negative language such as ‘burden,’ vulnerable’ and ‘challenging behaviour’ used to describe people who need support enables professional people and groups to keep service users at a distance.  This in turn leads to professional inertia and a lack of support for service users.  This avoids tackling fundamental and basic issues such as spending time and talking with people who are isolated and lonely and doing tasks that are of concern to them.

The lack of service user voices or, as professional people often state, the lack of the ‘right’ service users voices means that they cannot do anything until these individuals and groups are identified and consulted.  Many consultations take place with service users and needs are known but there is seldom a report back to those who participated.   Services that do change or are extended often take months by which time further consultation takes place.  Service users who do participate often become disenchanted as their views are dismissed while the search continues for that elusive service user who will change the face of social care services.  Those service users with the tenacity and expertise to continue are often expected to contribute without acknowledgement of their skills and expertise, the need for expenses, the cost of attendance, lack of briefing or information in appropriate formats to enable them to have equality in a group setting.  The outcome of these experiences enables professional people to continue to think they ‘know best.’

Placing service users in silos, mainly according to impairment or situation, often denies potential service uses and those already receiving support, a person centred, holistic assessment or review.  This can compromise choice and control and the gateway to independent living.  Direct payments continue to be denied for certain groups of people, such as those in the mental health system.  On challenging this lack of information for the potential service user it transpires that social workers find the process and payments system difficult and tend to blame the service user’s inability to manage as the issue. 

Meetings that engage professional people from a number of disciplines is a costly exercise and seldom results in positive outcomes for service users.  Meetings take up vast amounts of time, with time taken to produce agendas, minutes and reports that seldom produce results conducive to improved lives for people who require support.  Meetings are often just a repeat of what has already been discussed with no tangible outcomes.  At a recent seminar that focused on social care at a time of ‘austerity’ the question at the end of the discussion was ‘so what do you think today has achieved?’  The response was a shocked ‘Now that’s an interesting question,’ followed by silence.  

Power tensions within health and social care structures show the difficulties that arise from the ‘silo’ approach in determining what outcomes will be achieved from a service user perspective.  Senior managers involved in managing budgets feel responsible for ensuring it is spent on achieving outcomes that will benefit their service user clientele.  Many needs may not be directly applicable to their budget and so the holder either has to become creative or waste it in trying to find alternative solutions.  Long delays ensue in providing any support as service user’s lives do not fit these silo arrangements.

Medical model training does not generally suit the social care sector and framework and what is offered does not always equip staff with the appropriate social model skills.  Far more service users trained to deliver a social model perspective and programme are required to present on professional courses and at seminars and conferences.  Service users are the experts in this field and yet their expertise and valuable contribution is often overlooked.  

The ‘elephant’ overarching these issues is funding together with an approach and attitude towards service users that is mainly negative, where they are viewed as a burden and incapable.  This leads to a reluctance to communicate, share power and budgets and creates a ‘them and us’ situation with mistrust by service users who realise and understand that nothing will change.

Institutionalised oppression continues to exist and makes it virtually impossible for service users to understand the systems and structures within which professional people work and the barriers that exist to keep service users out.  Professional people themselves often state they do not understand the systems and structures within their culture and so where does that leave the lives of service users.  Trying to break through them causes anxiety, distress, frustration and anger by service users, and often by professional people too.

From a service user perspective to watch and listen to professional people struggle to eat this gigantic ‘elephant’ one bite at a time is asking for an impossible outcome.  It devalues the lives of those who require support and wastes vast amounts of money and time and creates an unhealthy appetite as people spend time chewing.  The cost of the numbers attending meetings in any one week is phenomenal and is seldom evaluated in terms of what has been achieved and what the true costs are in any given period.  Professional people often declare that the lunch break brings welcome respite from this difficult ‘animal.’ Deconstructing this elephant is unpalatable and unlikely ever to occur and is made harder by the inequality of funding that exists with a health budget of £150 billion pounds against a social care budget of £8 billion pounds.   A whole systems approach to health and social care in this time of ‘austerity’ may be the ‘ideal’ but who dares take up the challenge? 

What a Dilemma! - Leaving Home

What a Dilemma! – Leaving Home

Martha, aged 79, is not managing too well at home, her sight and hearing are slowly deteriorating, and it is obvious to her friends and neighbours that as she struggles to walk and do daily tasks, she clearly needs more help than they can give her.

Martha’s daughter, Veronica, lives in the Midlands while Martha lives in the family home, tucked away in a picturesque village on the South Downs .   Veronica is worried about her Mother and comes to visit as often as she can in between managing a full time job and two lively teenagers.  ‘It’s time I took action and start making enquiries about a suitable residential setting near to me and the boys,’ she muttered to herself.   On several visits over the last few months she had had difficult conversations with Martha, some of them ending in tears, others in anger or silent resignation.  

The day arrived for Martha’s move to the Midlands. The car was already loaded, the ornaments and family photograph albums tucked between the clothing in the suitcase, and only yesterday Martha said a tearful ‘Goodbye’ to Sammy her twelve-year old cat as he was driven away to the cattery.

On reaching the car where Veronica stood waiting with the front passenger door held open, Martha slowly struggled to turn and take one final look at the home in which she and husband, Leonard, had brought up their three children, Veronica, the eldest, a partner in a law firm, Victor, an engineer working in the Far East, and Albert, the youngest, living in Scotland with his family of four children aged 4 to 14. Martha fought back the tears as Veronica started the engine and pulled away. She didn't want Veronica to see her upset as she had gone to so much trouble to find her a place to live.  'I should be grateful' Martha thought, 'she's worked so hard to find me somewhere near her, and she says I'll love seeing the grandchildren more often.'  The journey lasted over five hours, punctuated with a coffee and combined toilet stop and an occasional comment mainly about the traffic and the weather.  The silences hung heavy between them. They reached St. Agatha's Nursing Home as afternoon tea was served. 

The large oak door swung open.  'Hello, you must be Mrs. Jenkins, we've been expecting you. Come in now and have some tea. You must be tired after your long journey.'   Martha, using her walking frame, inched along the hallway and was shown into a sitting room. Although her head was partially bent downwards she could see enough to realise that there were several people sitting in armchairs.  She was shown to a vacant seat and Veronica instructed Martha to turn round and sit herself down. 

'We'll get you some tea, while I take your daughter to the Office to sort a few things out and then, when you've had your tea we'll come back and take you to your room.'
A ginger cat wandered past Martha's feet and she wondered how Sammy was faring in the Cattery. 'I hope someone will take him and give him his favourite fish,' thought Martha. 

She finally got to see her room, No. 27.  She hoped she'd remember where it was but her initial thought focused on the toilet.  'I need the toilet,' Martha whispered, and was shown to one two doors down on the opposite side of the corridor.  The Manager, Mrs Mehta, and Veronica talked quietly as Martha slowly made her way and then the door was shut behind her.  At last she was alone for a few minutes.  

Now back in No. 27, Martha reached a chair beside the bed, Veronica bent and kissed her cheek.  She was in a hurry to leave. 'Im going now, Mother, I've sorted everything. Now you've got nothing to worry about and I'll be back to see how you're getting on in a few days.  Be good now, and don't give the nurses any trouble,' and with a final wave she was gone. 

Martha sat staring at a photograph of Leonard, positioned on the bedside table. Her thoughts wandered from Leonard, to Victor, to Sammy, to the 'Farewell' tea the neighbours had brought to her home just yesterday.  Those faces seemed a long way away. 'Will I ever see Marjorie, Rose, Dorothy and Peter again,' she wondered. Even the Meals on Wheels Lady had called in for a cup of tea and slice of cake.  Her thoughts turned back to Leonard.  She wondered what Leonard would say about her sitting here in this room on her own in a place she'd never seen before, not chosen.  he wouldn't have liked the fact Veronica was selling their home. Veronica hadn't told her how much it cost to stay here but she knew it must be expensive if her home was being sold. At that thought she shed a tear.  She felt abandoned and wanted to shut her eyes and not wake up. 

Martha was interrupted by a knock on the door.  'Can I come in. You've just arrived, I know. It will feel strange at first but you'll soon settle and in a little while I'll come and get you and you can meet some of the other residents before supper.'  Martha was alone again and thought some more. 'I don't want to meet the other residents,' she muttered angrily to herself.  Martha shed a silent tear as her thoughts turned to everything that was familiar to her. 

There was her darling, Sammy, her home, already with an estate agent, to be sold as quickly as possible to pay the Nursing Home fees.  Then there were her kindly neighbours who popped in daily and did her shopping.   Then there were he nurses who came three days a week to dress her leg, the milkman who made her a cup of tea on Saturdays when her neighbours were busy with their families.  Martha thought of her Day Centre friends, she only went on one day a week but she loved the ride around familiar roads and the chats they had together.  They were like her family, too.  She slowly left Leonard and looked around the room.   'Where was the telephone?  How will I get in touch with Victor and Albert, and what about the neighbours?'  She hoped Veronica had remembered to sort out the phone but she couldn't ring her to ask.  Her mind wandered off into thoughts of her Doctor whom she had known since the children were small.  ‘Who would look after her now?  She admitted to herself that there had been times she was lonely, terribly lonely, when the neighbours were away, usually babysitting the grandchildren, the milkman was on his holiday, there was no post and the nurse phoned to say they were extra busy and she would have to wait for them to visit. She was alone now and a great wave of fear surrounded her.  She was amongst strangers who seemed kind but she didn't know them, she couldn't understand some of them and she was worried about whether she could afford to stay.  Veronica said they'd had a prospective buyer for her home.  Her beloved home, ‘Oh, no!  How could Veronica sell the family home where the swing still stood at the end of the garden and Leonard's rose bush that he'd given her on their fiftieth wedding anniversary, was still in bloom.  Memories and emotion mingled together. 

'Now Martha, we can't have you sitting here on your own, come and meet your new friends.'   Martha, at that moment, didn't want to meet anybody, she wanted to go to the toilet and she wanted Veronica to take her home. 

Veronica drove to her home with a heavy heart, yet she was relieved.  Mother was safe, she'd soon settle, she mused.  The next morning she phoned the Home's Manager.  

'How's my Mother, Mrs. Jenkins?  I'm her daughter and I want her to be happy and settle in.  Please, if anyone phones to ask after Mother, say she's fine and they're not to visit, send letters, or flowers.  I want to make sure she isn't unsettled with constant reminders of home as it will upset her and I have enough to worry about without her being disturbed.'  As I said yesterday, this was a difficult decision to make and I want to be sure I’ve done the right thing.   Mrs. Mehta had heard similar requests from relatives and gave a deep sigh as she replaced the phone on its holder.

Veronica put the phone down abruptly and convincing herself she’d done the right thing reminded herself that when she visited at the weekend she must take Mother a new nightdress and some talcum powder.  She added it to the list where she had written socks and vests needed for her son’s football match that she was driving them to on Sunday. 

Ann Macfarlane OBE

Restraint: Taking the Heat out of Challenging Behaviour?: the resilience of older people in residential settings

Older people can so quickly find that negative labels are pinned on them.  They are labelled as exhibiting challenging behaviour, defined in my terms as shouting, abusive language, and sometimes unnatural physical strength.  In the majority of people these behaviours are known as anger and aggression but in residential settings everything ordinary changes as a medical approach takes over.   Residential settings provide an environment where every day seems the same, where people cannot remember the day, the date and time, where activity is inactivity, where there is nothing in common with the strangers sitting either side and the staff supporting them are strangers; where the television blasts out its repetitive messages displaying indecipherable pictures, where a radio pumps out songs with no distinguishable words, often competing with the television clangour at the same time.   It seems that coming from the outside into this environment and atmosphere where ‘one size fits all,’ older people display amazing resilience with the ability to survive in this bizarre and bewildering artificial world.

So am I being over the top, who am I to say how it is? 

First of all I have first-hand lived experience, not just of one setting but of many.  Secondly, I am privileged to have the professional position to visit a wide variety of residential settings where similar situations are witnessed over and over again.  Put twenty to thirty people in a multi-purpose room, create all of what has been described above, and you are transported into a very depressing and overwhelming environment.  Add to this experience overpowering heating levels where to feel fresh air on ones’ face is a rare or non-existent occurrence.   It is not difficult to restrain people.  Turn up the heat on people who have lived long and who have reached a point in life where losses experienced are multiplied several times over and often occur simultaneously, drown out the sadness with a cacophony of sound and the one thing in your control is to exert ‘challenging behaviour,’ or fall asleep.  Add to this a time in life where the bladder weakens, more toilet visits are required and while there is a desperate need for a second cup of tea, and where the fear is that even one cup of tea will demand a trip to the toilet the result is that each day is spent in constant worry.  The concern is that an accident is likely to occur and one will be labelled ‘demanding,’ ‘selfish,’ inconsiderate of others and to ring that bell for help is one ring too many.   

If you feel the scene is too unbearable, maybe it is because you have been in that difficult position yourself or have spent time agonising over finding a setting for a relative or friend.  It can be an agony or it can be a relief when you find a setting that ticks most of the boxes..  Whatever the emotions, it is not you that will live in that setting.  There are instances where relatives or guardians weald the ultimate power of denying a resident any outside contact.  And this is their home!

Restraint is often applied when it is deemed a person will get up from their armchair unaided or want to wander outside.  Let me pause a moment.  How often do you get up out of bed or from a chair without thinking, arrange to do things outside the home, visit friends, see a film?   The thought of being restrained, conforming to a timetable that never varies, having to ask people for help whose names  cannot always be remembered, especially when people are engaged for a day from an agency, it would make anybody want to give up the fight.  The more so with a lack of continence support, a lack of refreshment when one feels like it, and the constant blare of television and radio and people trying to make themselves heard and understood.

‘Restraint,’ ever a threat but more a reality.   ‘Challenging behaviour’ – bring it on!

Ann Macfarlane

Always looking for the positives. 

PS: There are occasions where residential settings provide quality services, where older people are treated with respect and dignity, are listened to and requests acted upon, but the bar has to be raised.  I am the first to acknowledge where I see good practices and a willingness to learn.

PPS:  Visiting a friend in hospital yesterday, a patient got out of the armchair.  ‘Oh, I’m stiff, I’ve sat too long.’

Nurse: ’ Sit down, don’t wander off.’

Patient:  ‘It’s good to stretch one’s legs, take exercise, I was just going to look out of the window.’

Nurse:  ‘Sit down, I need to see where you are.  Don’t move.’

Assisted Dying - Airbrushed out of Society

Currently making its way through the House of Lord’s is Lord Falconer 's legal efforts to relax the existing legislation on the Assisted Dying Bill which is likely to receive a second reading in the Lords shortly.  Enough 'Yes' votes will enable it to proceed to the Commons before the summer recess and already this amendment feels like an unstoppable tide.

I have just come from a meeting of the local Disabled Peoples' Organisation where self-directed, Independent Living support was discussed.  At the end of the meeting I presented the proposed amendment to the existing Bill's legislation after which I boarded a bus. 

During the bus journey I sat in the allocated space for wheelchair users when, to my disgust, I noticed that the wheelchair symbol had a sticky note placed across it completely blocking it out.  I felt the hatred expressed in this simple action.  As a disabled person this obliteration of the sign gave a strong message that disabled people are a waste of space (literally). I felt I had been not only airbrushed out of the local community but out of society. It led to deeper feelings that if a person could so easily eradicate the symbol they could eradicate me and other areas of my life where they view disabled people as economically too costly, where disabled people are not worthy of housing, work, food, recreation, relationships or practical support.  I felt sick. It made me realise even more strongly how the extension to the existing Assisted Dying Bill will risk disabled and older people experiencing depression or worse. And this is without them having to stump up money for ever-increasing financial contributions towards their care packages in order to stay alive. 

It is known that Independent Living and a future worth living continue  to remain a pipe dream for the majority of disabled people, irrespective of age.  It is recognised that when someone is labelled ‘severely’ disabled and depression establishes itself, it is relatively easy to be coerced into thinking about ending one’s life and for media remarks such as ‘we (presumably meaning the public) cannot financially support the growing numbers of older people.’   Thoughts and messages can get compounded and it does not take long for a disabled or older person to make a decision that they may not live to reverse.  What a disabled person may think and feel one day can be totally different the next day so it is important to understand the implications of this extension to the Assisted Dying Bill.   The piece of paper covering a symbol on the bus can easily be removed, but it does not eradicate the feelings that may result in the serious decision to end one’s life.  This decision may not be so easy to change and neither will an extension to the Bill.

Go to the 'Not Dead Yet' website for information, updates and petition to the amendment on the Assisted Dying Bill. 

Yoghourt: One for all or all for one

Yoghurt: All for one or one for all!
A true encounter

Scout Master:  'Tonight when the scouts met I bought them all chocolate bars. Then I remembered one lad wouldn't be able to eat his because he's disabled and food has to be liquidised. I bought him a yoghurt. I was so pleased I thought of it as I would have hated to leave him out.'

Response:  'That was kind of you but perhaps next time you could buy all the scouts a yoghurt.'

Ann Macfarlane OBE

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