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

Transforming the crumbling built environment. Part Two.

This blog follows on from the one written on subtle abuse and difficulties that exist in the environment for all people, but are a barrier for disabled people.  In order to improve facilities and services, the minimum action is for councils to appoint well-trained access officers.  Access officers have diminished or become non-existent as councils struggle to balance their books. This is a false economy as councils now lack professional expertise in this area; with no-one experienced in giving advice to councillors around the barriers that cause many disabled people to remain marooned in their home environment.  

 

Barriers in the home greatly affect wellbeing.  Access officers understand planning applications in terms of the law and regulations.  Their advice is critical if errors are to be eradicated at the design stage.  When applications go through that fail to address access issues, it results in discrimination, violation of people’s human rights, and involve councils and health authorities in further financial expenditure.  Worst of all is that some mistakes cannot be rectified and they mean that disabled people may have no access to facilities and services that they are entitled to - and dependent upon. 

Apart from the appointment of access officers, there is a need for access groups to be independently managed and controlled by well-trained disabled people.   Access groups provide advice and expertise to access officers, councillors and senior health professionals.  In this way access for all people will be free from the barriers that currently exist and that are deteriorating because of the lack of this input to their commissioning programmes. 

Disabled peoples’ lives should not be totally reliant on health and social care but must cover access issues that arise in all statutory and voluntary organisations.  In this way people who work in these sectors will be far more knowledgeable and start to take responsibility for their day-to-day working practices and policies. 

In 1981, International Year of Disabled People, there was a shift in thinking within local councils and, slowly, environmental access was improved.  Now time has passed, and many older disabled people who worked tirelessly to progress access, no longer have the energy and resources to start all over again.  Younger disabled people have greatly benefited from improved access and they now need to get involved.   Younger disabled people can work, shop, visit refreshment outlets, and enjoy leisure pursuits, albeit not in entirely accessible environments.

Now economic pressure is building, environment access is crumbling, buildings need repair, potholes and cracks in our roads and pavements appear daily, bushes and trees overhang and make it even more difficult for people with visual impairments and learning difficulties to move freely.  Younger disabled people, with support from those with experience, must come together to discuss and take action.  Councils must see it as a civil right for its citizens to have access to facilities and services.

One group of young disabled people from an Organisation called Young, Disabled and Positively Artistic (YADAPA), who have had opportunities to engage in dance, drama, art and craft discuss their environment and how it affect them.  After six years of pleasure and learning, they are becoming ‘political.’   Many in early adulthood want their opinions heard.   The initial idea was for them to have a voice and now the time has come for them to take responsibility, and with improved confidence, speak out in whatever way they can manage to.  Stephen Hawkins has made his ‘voice’ heard, so can they!  

Ann Macfarlane

October 2013

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”

====================================================================

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