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?