The subtle and not so subtle abuse that exists when out and about in the built environment

My last blog was about subtle abuse that focused on people’s values and behaviour and the enormous difficulties in trying to make positive changes.  Now, now I want to write about the abuse, sometimes subtle, and at other times not so subtle, that exists in the built environment.  An accessible environment is important for everybody but the issues become much more complex when disabled people are trying to get about. 
 
What disabled people fought for in improving environmental infrastructure in the 1980’s continues to need pressure both locally and nationally just to maintain the existing access.  You may remember a time when campaigns by disabled people centred on public transport and there were people who applauded the efforts being made, and others who thought disabled people selfish.  Most people, today, take for granted that they can access all forms of transport and the main issue is usually the cost of travelling. 

The huge cost to disabled people, both physically and emotionally, and the gains that were made, are quickly deteriorating, being neglected or not being addressed at the design stage.  Two major developments local to me, one a major health centre and the other a road improvement scheme, have both made headline news in the last few weeks because disabled people’s voices, knowledge, expertise and concerns have been ignored. 
 
Professional people in the statutory authorities are finding the criticism hard to believe and feel that these new schemes are flagships in the local community.  Both have fundamental flaws and it will now take huge additional resources to make the necessary changes and of course, some will be impossible to make as the schemes are far advanced.

In these and other instances non-disabled professional experts in their field chose not to engage with disabled people from the concept through to completion.  There are many who cannot understand how disabled people can be expert in a particular field when they need ‘caring for’ and ‘protecting.’  For them, the two are a mismatch!  This means disabled people continue to be abused by an environment that falls short of meeting their needs, and the needs of the public as a whole.  Next time you leave home, check how many heavy glass doors you struggle to open, taps in public toilets that you cannot turn on, signage with print illegible or that has two small a font and with no pictures for those who cannot read or understand them
In the next blog I will write about what would improve the downturn in environmental access.
 
Ann Macfarlane
September 2013

Subtle Abuse and its long-term effect

In 1994, in a professional research journal whose contributors were professional disabled people, I contributed an article on the subject of subtle abuse.  Re-reading that article was interesting as today the statutory authorities have safeguarding teams that comply with complex legislation and regulations.  Safeguarding teams focus on serious alerts raised by members of the public and those working in a variety of health and social care settings, as well as other professional bodies such as the police.  Serious alerts usually focus on abuse that causes serious physical harm, sexual abuse and those forms of abuse that usually have outcomes that provide evidence.

The 1994 article looked at those intellectual and emotional forms of abuse that often leave recipients in a state of depression that may take many forms.  The perpetrators are immune to this form of abuse, it is common practice and people on the receiving end are expected to be appreciative and continually grateful!    

So what is meant by subtle abuse?  It is, for instance, daily having meals interrupted with the arrival of the medicine round.  In the middle of eating, people are expected to open their mouths while the pot containing a variety of tablets are tipped into the mouth, often with no water readily available. 

Or when people have catheter bags emptied, again during meal times or while people are enjoying the company of visitors.  Peoples’ conversations are interrupted and wheelchair users have pushers coming up from behind and whisking people away for a bath or some procedure, without as much as a word being exchanged.

The list of issues that add to the constant daily abuse that people tolerate, including patronising behaviour and language, goes without so much as a challenge.  It is hard for a recipient to be assertive and speak out, if they are able to articulate what they experience, particularly when they are in need of regular support.

There is much that could be added to this article, apart from the fact these issues are as relevant today as they were twenty years ago.  We should all take responsibility for tackling subtle abuse.  The issue certainly should have high priority on the health and wellbeing agenda.

Ann Macfarlane

August 2013

Cutting from my local paper

Here's a cutting from my local newspaper, the Surrey Comet. Click on the picture....
Ann

On being thankful for the many things that older age has brought to life.....

The Launch of:  Older Age: the route to 21st Century Wellbeing - Royal Festival Hall: 26th June 2013

“No loneliness at this event; when older people were feisty, animated, sharing stories and joking”

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An electric event. It’s testamount to how much more confident older people feel these days that many were throwing questions at Care Services Minister Norman Lamb, Observer journalist Katherine Whitehorn  and film-makers, including those from ITV. They were all joining in discussions on the serious and growing issue of age - older age.We were there to hear about the project report’s findings of the “The Shaping our Age” research.

This was the culmination of a three-year Lottery-funded project and was undertaken by the Royal Voluntary Service (previously known as the Women’s Royal Voluntary Service), Brunel University and De Montfort University.  The Older Peoples’ Reference Group, there to advise and steer the Project, was represented by older people from the four nations.  I chaired the Reference Group during the three years.

In the research it was discovered that older people, that is those 65 and older, do not feel old; they do not want to be labelled thus, and they certainly do not want to be patronised and treated as children. Much of the research focused on loneliness and the lack of social connectedness and visual examples were  given of how in bringing people together and offering a choice of activities, engenders a sense of 'well being.'. 

Loneliness can be endemic as one grows older and often occurs  when adult children leave home, a partner dies or if community contact becomes non-existent or fast diminishes. 

Yet, on this sunny launch day it was almost impossible to conjure up a picture of loneliness, when older people were feisty, animated, sharing stories and joking. It was a time for celebration and older people were at the heart of it.  

So what makes up this major issue of loneliness?  There are no easy answers so the learning from the report  should be taken seriously; it is a source of practical support in working out what works.

On the homeward journey I had time to ponder on the findings of the research and the day's events and I was thankful for the many things that older age has brought to life.  For me I am blessed with what was missing when I was younger; family, friends, mobility, and sufficient resources to buy a cup of tea!  Those are some of the things that are more likely to have been experienced by most when younger, not older. 

Launch day for the report brought to the fore what is needed now and for people to act on the findings and achieve positive outcomes for those whose life in older age is lonely and diminished in different ways. 

Ann Macfarlane
June 2013 

Personal Budgets in residential settings

I am an Expert-by-Experience and undertake inspections with Care Quality Commission (CQC) inspectors. Inspectors have a duty to ensure that all medical and social care facilities and services meet a set of mandatory regulations that focus on Standards.

I usually accompany inspectors who inspect residential, nursing home and hospice settings and all visits are unannounced.  The buildings, environments, together with the services that people may need and receive, may vary greatly. For example, some homes offer en suite facilities and single and double bedrooms, others either no or just one or two en suite rooms and only single occupancy. The services, too, vary and the choices people can make may rest on how much they can afford to pay, the home's location, their network in terms of relations and friends. Where relatives live and how much control they have over a person's ability to control their own lives, particularly in terms of their financial position, can make a significant difference to where they will reside and what services and support they can expect.

On inspections I am charged and want to focus on the quality of peoples' lives within these settings. As a disabled person, people are generally pleased to communicate with me because they recognise I may have some understanding related to their experience. One of the main topics of conversation is around ordinary, day-to-day living and how it has changed for them. Tasks, such as the ability to make decisions and act upon them spontaneously, include buying and writing greetings cards, making a telephone call, sorting and hanging clothes in their wardrobe, changing their mind over what to eat for lunch or eating an additional snack. Repeatedly people say they feel 'imprisoned' because they cannot go out through the front door without assistance and days can go by without feeling fresh air on their skin or being in touch with nature. People say they feel isolated from family and friends and from their local community, enjoying leisure activities they once enjoyed and even having the services from a familiar GP.

In some residential settings much emphasis is placed on 'person-centred' care, support and activities and emphasis put on equality of opportunity and integration. For many people, this approach remains a pipe dream. This is where personal budgets could significantly change peoples' lives and experiences within these settings. A part of the fee that people pay, usually on a monthly basis, could be retained by the individual or relative to support a 'person-centred' approach to daily living. If personal budgets are part of the information given to people as they make life-changing decisions, then it could make a huge difference to people who either opt to go into a residential setting or for whom this is the only way in which they can be adequately supported. People living in their own home in the community and who need support have a right, following a community care assessment, to be provided with information on a personal budget. So, irrespective of where a person lives, a personal budget should be offered. A personal budget enables people to purchase equipment, services or personal assistance to enable them to live life in the way they choose.

Personal health budgets are also becoming available which will enable people to buy an additional range of health and social care services.  Personal health budgets are being piloted in parts of the country and it is hoped that will soon be available to all in the same way people access personal budgets.

Ann Macfarlane OBE

Disability Equality and Independent Living Consultant