Category: Commentary

The Mental Capacity Amendment Bill

Well reader, you may have heard of the The Mental Capacity Amendment Bill currently going through Parliament, have you been consulted about the changes.

Government introduces bill to overhaul deprivation of liberty law in bid to save councils £200m

Part of the bill is that they want to introduce a form of Deprivation of Liberty Safeguard (DOLS) which can be authorised by your Hospital Administrator to

consider restrictions of people’s liberties as part of their overall care package

although not implicit in legislation, it ignores recommendations from the Law Society.

Recent opinion is that one of the ways that the Liberty Protection Safeguards (LPS) could be used is when a person living with Dementia is an inpatient in Hospital, fit for discharge but there is no Social Care available.

In order to free up a bed, the Hospital Administrator could authorise an LPS against the person and force them into a care home until Social Care is available, to the detriment of the person, their Dementia, their rights and their family and could also be seen as a conflict of interest.

The new LPS also expands the sphere of influence of DOLS into care provided in a persons own home.

So where does that fit in with the United Nations Convention on the Rights of Persons with Disabilities, or does it. It seems to open to interpretation.

During the first stage through Parliament significant parts of the Law Commission report were excluded from legislation and some areas around advocacy were excluded from discussion altogether.

Will these areas be excluded from the second reading, I do not know, but it is incumbent on the opposition parties to raise these issues and I will be looking to see if they raise the concerns contained in this and other linked articles.

The bill reaches the committee stage tomorrow, September 5th and then goes on to a further reading in Parliament before becoming law.

As I have said reader, although not implicit in the legislation, there could be a conflict of interest by the person authorising the Liberty Protection Safeguard, as it continues through Parliament it will interesting to see how it will conform to International Law c/o the United Nations Convention on the Rights of Persons with Disabilities.

Whilst I am no expert in these matters reader, reading about this bill as a layman does raise concerns.

There is further comment in this and other areas of the bill in this blog


Further articles that raise concerns and question the validity of the changes

Comment on LPS containing many concerns

Mental Capacity Report: Special Report: Law Commission MCD Project

The ‘Adjusted’ Liberty Protection Safeguards: Some Concerns

The United Nations Convention on the Rights of Persons with Disabilities (CRPD)

Law Commission: Mental Capacity and Deprivation of Liberty

Further Comment on various aspects of the bill

What is the place of law? News from the second reading of the Mental Capacity Amendment Bill

‘Son of DOLS’ – summary and some initial thoughts from the 39 Essex Chambers Mental Capacity Report editors

Dimensions briefing on the Mental Capacity (Amendment) Bill

Majority of practitioners opposed to key aspects of DoLS replacement proposals

Westminster changes to Mental Capacity Act threaten rights of vulnerable adults

Behavioural and Psychological Symptoms of Dementia (BPSD) – Why Ban It

Following on from yesterdays article Behavioural and Psychological Symptoms of Dementia (BPSD) – What Is It, this article moves on to the medical model of BPSD and why it should be banned.

Let me state from the outset reader, that the campaign to Ban BPSD in no way advocates the complete removal of antipsychotics.

As with any other chronic terminal disease they do have a place but the campaign wants to see healthcare systems move from the medical model which on further reading you will see that it abuses the person with Dementia and ignores their human rights, to the social model that treats the causes.

Currently, healthcare systems follow the medical model of BPSD which leads to the pathway of Chemical Restraint, Deprivation of Liberty and Involuntary Care.

The medical model treats the symptoms of BPSD usually by Chemical Restraint which leads to increase clusters of behaviours associated Dementia.

During nearly 20 years working in healthcare I saw many people living with Dementia given 0.5mg of Haloperidol/Haldol only for the person to disappear within 48 hours, unable to do the basic activities of daily living (ADLs), the person and quality of life gone.

The NICE/SCIE guideline “Antipsychotics in people with Dementia”                                   Last updated : 

“Advises against the use of any antipsychotics for non-cognitive symptoms or challenging behaviour of dementia unless the person is severely distressed or there is an immediate risk of harm to them or others. Any use of antipsychotics should include a full discussion with the person and carers about the possible benefits and risks of treatment.

In the May 2012 edition of Drug Safety Update, the MHRA advised that no antipsychotic (with the exception of risperidone in some circumstances) is licensed in the UK for treating behavioural and psychological symptoms of dementia. However, antipsychotics are often prescribed off-label for this purpose.”

Many pathways advocate reducing Polypharmacy that may contribute to BPSD but they do not advocate replacing them with alternatives. Polypharmacy refers to a person taking 5 or more different types of medication, surely ready they wouldn’t have been prescribed if they weren’t needed.

Removing medications without replacement may cause clusters of BPSD because symptoms of a pre-existing condition return causing distress to the person.

A social model  is concerned with treating the causes of behaviours, reducing the need for Chemical Restraint, Deprivation of Liberty and Involuntary Care. It enables  people to continue to live with their Dementia’s for longer, reducing the need for safeguarding, involuntary care, being moved to a Care Home and respects the persons rights to live their life without restraint.

A lot of pathways include the different types of Mental State Examinations and Cognitive Assessments which are subjective tests that only provide a snapshot of a moment in time and are subject to variations based on the time of day, and many of the causes of BPSD.

Some of the potential causes of behaviours in Dementia are:

  • Urinary Tract Infection (UTI)
  • Constipation
  • Hot/Cold
  • Pain
  • Noise
  • Environment
  • Not Recognising People/Places
  • Hunger/Thirst
  • Fear
  • Apathy
  • Regressing to a Different Time
  • Boredom/Loneliness
  • Lack of Meaningful Activities

which require proper assessment and treatment/strategies rather than antipsychotic medication.

Alzheimer’s Association : Challenging Behaviours

“Following representations by Dementia Alliance International and Alzheimer’s Disease International, the CRPD Committee has responded to our joint request to make it clear to Member States that persons with dementia and their care partners are fully included in the implementation of the CRPD on the same basis as those with other disabilities.

In 2017, dementia has been specifically mentioned in the review process on Canada and in a Parallel Report submitted by Disability Rights UK in the ongoing review of the UK government. Dementia is now described in UN documents as a cognitive disability.

The use of the model of BPSD, can be a treatment of convenience that makes it easier to care for a person with Dementia but it’s effect is the removal of the person, their quality of life and their rights.

Using a social model to treat the causes/symptoms of Dementia can empower the person living with Dementia, retain the person and uphold their rights..

Dementia isn’t a mental health condition, it is a cognitive disability. Dementia is an umbrella term for over 100 chronic terminal neurological diseases which have a physical cause.

Obviously, as with any chronic terminal disease, there will be a minority that may require the intervention of a mental health professional and possibly pharmacological interventions during their journey with their disease but only after treating the causes of behaviours to improve their quality of life, using the social model, has failed.

The social model should recognise Dementia as a cognitive disability and begin at the point of diagnosis with state funded, inclusive rights based post-diagnosis support and services which continue along their journey with Dementia, regardless of age at diagnosis and in line with the UN Declaration of Human Rights and the Convention on the Rights of Persons with Disabilities (CRPD).

Further comment will be tomorrow in my Sunday Musings

I’ll leave you reader with

Leah Bisiani, MHlthSc, Dip Bus, dementia and aged care consultant, RN.1
Kate Swaffer, human rights activist, author, MSc dementia care, PhD candidate
Daniella Greenwood, consultant, author, speaker, activist
Dr Chris Alderman, B Pharm, PhD, FSHP, BCPP, CGP
Dr Al Power, Geriatrician, author, educator
Susan Macaulay, care partner, author, dementia advocate

who write an Open Letter to Gabriella Rogers and Channel 9, Australia


Resources

Beyond the Medical Model: The Culture Change Revolution in Long-Term Care

The social model of disability

Dementia, rights, and the social model of disability

Care planning, involvement and person-centred care

The NICE/SCIE guideline “Antipsychotics in people with Dementia

Haloperidol/Haldol

What is Polypharmacy ?

NHS Scotland : Stopping Antipsychotics in Patients with Dementia

Safe Prescribing in Dementia

Alzheimer’s Association : Challenging Behaviours

 

Behavioural and Psychological Symptoms of Dementia (BPSD) – What Is It

BPSD stands for Behavioural and Psychological Symptoms of Dementia.

BPSD refers to the non_cognitive symptoms of Dementia, particularly in the middle and later stages.

It is estimated that up to 90% of people with dementia will experience Behavioural and Psychological Symptoms of Dementia (BPSD) at some time during their journey with Dementia.

Behaviours may result from any combination of neurodegenerative damage associated with the disease itself, unmet physical needs such as pain or discomfort, the environment they are currently in and unmet psychosocial needs, such as the need for meaningful human contact or fear.

Some examples of the BPSD are:

  • repetitive behaviour;
  • mood disturbance (e.g. depression);
  • social inappropriateness;
  • agitation;
  • wandering;
  • psychosis, which may include delusions (false beliefs) and hallucinations (seeing or hearing things that are not actually there);
  • physical aggression; and
  • sleep disturbance.

Commonly, BPSD is treated using the medical model that leads to a pathway of Chemical Restraint, Sectioning and Involuntary Care.

As an example, the model will suggest treating pain but does not mention that something as simple CoCodamol which may exacerbate BPSD by causing constipation thereby causing a cluster of symptoms which will eventually lead down the BPSD pathway.

It may also suggest reducing existing medications, well surely reader you wouldn’t be on any medication that was not needed. If any of my medications were stopped and not replaced by something that wouldn’t have a negative impact on BPSD, in time they could lead to the appearance of a cluster of BPSD symptoms and other medical problems moving on to sectioning and involuntary care.

There doesn’t seem to be any general recognition of environment in any of this either. If assessments for BPSD are done outside the home environment, any number of factors could lead to the appearance of BPSD.

The British Medical Journal article Behavioural and Psychological Symptoms of Dementia (BPSD) . The issue is the cause not the cure goes some way to pointing to environment as a cause.

Below is a summary of seven of the most common deficits seen in dementia that are most clearly linked to specific regions of the brain.

These are known as the 7 A’s:

1. Anosognosia – lack of insight into one’s deficits or illness attributable to temporo-parietal pathology.

2. Amnesia – loss of short-term and long-term memory due to pathology in the hippocampus and/or the temporal lobe. Short-term memory loss causes difficulty learning new information; long-term memory loss causes difficulty recalling
previously learned information and occurs in reverse order to the memory storage process (i.e. loss progresses from most recent to most remote).

3. Aphasia – loss of language expression or comprehension. In expressive aphasia (due to damage of Broca’s area of the frontal lobe), the individual may be able to comprehend speech, but is unable to express him or herself. In contrast, a person with receptive aphasia (due to damage of Wernicke’s area of the temporal/parietal lobe) may be able to express him or herself, but has impaired comprehension.
4. Agnosia – loss of ability to recognize people (including self), objects, or sounds despite intact sensory modalities of vision, touch, and hearing. The damaged area is the parietal lobe.
5. Apraxia – an inability to execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform them, due to impaired motor planning and sequencing processes controlled by the parietal lobe.
6. Altered perceptions – altered depth perception, visual distortions, and altered tactile perception are commonly seen in dementia due to damage to the parietal lobe.
7. Apathy – an inability to initiate activities or conversation due to damage in the
frontal lobe.

…any of which may contribute to BPSD.

The broken lens of BPSD: why we need to rethink the way we label the behaviour of people who live with Alzheimer’s Disease

Polypharmacy which refers to the use of a large number of medications, commonly considered to be the use of five or more. Since polypharmacy is a consequence of having several underlying medical conditions, it is much more common in elderly patients and may be another cause of BPSD.

However, as an example, Primary Care in Ireland Definition , Assessment of a person with BPSD may be one of the better medical models however in their Medication Review they talk about stopping some treatments not replacing with other more suitable treatments, for example, Digoxin but not what to replace it with, which again could cause the appearance of a cluster of BPSD symptoms and other medical problems.

Kate Swaffer CEO of Dementia Alliance International recently wrote an article

Rethinking Dementia Care: Ban BPSD

Tomorrow reader, I will go on to give my opinion about why we should ban the medical model of BPSD in favour of a social model that retains empowers person and uphold the rights of a person living with Dementia.

However reader, the campaign to Ban BPSD does not advocate the complete removal of the use of antipsychotics in the treatment of Dementia, rather the ban on their inappropriate use which abuses the person and their rights.

Behavioural and Psychological Symptoms of Dementia (BPSD) – Why Ban It

 

 

So You Think You Have Disability Rights in the UK – Think Again

Well reader, you may have heard of the United Nations Human Rights Convention and the Convention on the Rights of Persons with Disabilities. You may of also heard of the UK Disability Discrimination Act and the UK Equality Act.

You may be surprised to learn reader, that none of these are not fully enforced in the UK, so lets have a look at what has been happening in recently.

Ageism widespread in UK, study finds

Ageism Hurts and it’s Discrimination

Need to use a wheelchair for a Benefits Assessment

Want to appeal a Benefits decision

Need to get a train:

TransPennine Express accused of ripping up disability discrimination legislation

Rail staff told not to help disabled passengers board if it makes train late

Or Perhaps fly:

Four airports found to be failing disabled passengers

Need to get a disability pass and not on benefits or have certain conditions

RailCardBlue Badge, CEA Card,

The new rules announced in January 2018, to make Dementia and Autism eligible for a Blue Badge have yet to be implemented in my area “but are out to discussion”

Need Post-Diagnosis Support, Services and Funding:

The Post Code Lottery

A third of people with dementia in England ‘not receiving full care’

Councils tighten reins on personalised care

Need Assisted Living, say goodbye to money and property

Mum has dementia and now Dad’s dead she will have to sell her home. Why?

Paying for Social Care. There are ways out of our care crisis, if only May had the guts to pick one,

Have Behavioural Issues, Hello BPSD:

Seniors In Pain Being Inappropriately Restrained

Antipsychotic drugs harm older people, let’s reduce their use

At the end We’re told we are a burden. No wonder disabled people fear assisted suicide

Do We Have A Right To A ‘Good Death’?,

Food Poverty

Doctors ordered to recognise the ‘human value’ of patients with dementia as part of a major overhaul of care

Disabled people losing their benefits a ‘scandal’ say campaigners

Why won’t ministers come clean about the impact of cuts on disabled people?

Thousands of disabled people failed by government’s ‘culture of indifference’, report finds

TUC Disabled Workers’ Conference: Government ‘has created hostile environment for disabled people’

Thousands of people with learning disabilities are “trapped” in institutional care and are having their “human rights routinely ignored”, MPs have heard.

Here’s why Human Rights in Healthcare Are Needed More Than Ever

UN denounces British government for failing to protect disabled peoples’ rights

Liam Fox’s Brexit trade bill set to crush disabled people

Talking to persons with disabilities you hear about how they lose support because they can speak at conferences, assessed as fit for work, because they can use social media and the other day someone told me that on more than one occasion, bus drivers have told them to walk instead of catching the bus for one stop to the supermarket, even though they cannot walk that far.

Then there are the perceptions of disabilities, the drooling hunched over wheelchair bound, incapacitated persons with the wrinkly hands, Dementia only affects the old, the old and disabled are a drain on the young and many more discriminating, denigrating comments .

Then there is Disability abuse, the name calling and labelling. The worst for a person with Dementia is “You don’t look like you have Dementia”

There is a slow change but as with the EU Withdrawl Bill, not everything is for the better.

There is now the Inquiry into dementia and disability launched by APPG on Dementia which may be a response to the UN to investigate Tory record on poverty and human rights or may be the experiences of others and myself have made me cynical.

In closing reader, whether Governments and Healthcare systems like it or not, rights based care for persons with disabilities is here to stay.

Care should be inclusive, rights based, equal between chronic diseases, with post-diagnosis support care and funding for the person and their carer/family.

We all need access to these things at some point in our lives, we pay our taxes and in return it is the duty of all to provide the care that we all need. If you are diagnosed with the 3 main causes of death in this country and other diseases, you shouldn’t be left without care or have to jump through hoops to access it.

The history of the 20th Century tells us that all appropriate inclusive care and support, services and funding should be available automatically, from the point of diagnosis upholding our rights in the process so that we never return to those dark days of disability abuses.

 

D Day, the Post War Settlement and the lessons from history still to be learnt.

Operation Overlord was the code name for D-Day, the largest invasion force in history, on 6th June 1944. It brought together diverse cultures, working to a common goal, the culmination of a world war, that confronted an axis of countries whose ideas were based, to a large part, on discrimination and human rights abuses.

It was to be a time, an opportunity, to learn from the the war and confine the old world order to history, building a new, fairer, inclusive world. the reality was to be very different.

The operation was the culmination of two years of planning and there were around 9,000,000 tonnes of supplies and 2,000,000 allied troops stationed in Britain before the invasion.

On D-Day, an armada of up to  5,000 naval vessels departed English ports with up to 160,000 troops aboard. Over 800 aircraft flew up to 30,000 men into occupied territory from midnight on 6th June 1944.

Also in 1944, the then Minister of Health, Henry Willink,  proposed the formation of a National Health Service.

All of this culminated, 11 months later in peace being declared in Europe and the Pacific in 1945, with the hope that lessons would finally be learned and that a vision of a “Fairer Society” would become a reality.

In July 1945 Labour won the General Election in Britain, starting the rebuilding process and in October that year the United Nations was established. The post war settlement was touted as a new dawn for a civilised fairer society, the reality has become somewhat different, with politics by Consensus.

By 1948, following the Beveridge report, the NHS began to much fanfare but this served to paper over the cracks of the “Fairer Society”. The Windrush generation began arriving in Britain, being one of Attlee’s Government of 1945 – 1951, failings, to give them British citizenship, an unfair mistake that still rancour’s today.

During the 50’s and 60’s, slum clearances and road building amongst other schemes, papered over the cracks of social and disability inequality. In 1957, Harold Macmillan said “most of our people have never had it so good”, which you could interpret reader, from the use of the word “most”, that during this time, governments were aware of inequalities and if things were that good during this time, successive governments failed to improve the funding model for the NHS. During the 1960’s things changed.

During the 70’s came financial crisis and strikes, it became apparent that society wasn’t fair and equal leading to the arrival of Thatcherism of the 80’s and 90’s, the riots, miners strike and the introduction of “Care in the Community” a supposed end to the warehousing of the disabled prevalent for hundreds of years, which again papered over the cracks with inadequate funding, support and services.

Then came New Labour, with their theme song “Things can only get better”, the dubious Iraq war and the failure to Control the banks and we also had the PR wonder called the Minimum Wage and Tax Credits.

Instead of controlling the inflated wages of some, prices, increasing company profits in part paid for by increased prices, tax avoidance and introducing a statutory living wage, we had the minimum wage and tax credits trumpeted as a fairer Britain, more papering over the cracks.

Following the General Election of 2010, the new Chancellor of the Exchequer found a note from his predecessor “There is No Money”, in fact New Labour had turned a budget surplus into a deficit of £1.6 trillion pounds which enabled Austerity and the draconian measures that followed.

With Austerity have come the cuts, the rich keep getting richer, recently it was claimed that 99% of the worlds money is owned by 1% of the worlds population, indeed George Soros recently received a pay settlement of £70 million, who needs that much. He is also a Hungarian born, American citizen, meddling in British politics.

Following the General Election in 2015 and the subsequent Referendum leading to “Brexit”, may be reader, leaving the European Union provides an opportunity to build a “Fairer Society” free from Legislation and interference from Brussels. May be politicians should spend less time arguing over a Referendum, which it was made clear by David Cameron in the General Election campaign of 2005, was a one time vote with no second Referendum.

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With the advent of Social Media, we seem to have moved on from papering over the cracks to “rule by division” and the “blame game”, dividing opinion by

blaming one part of society for ills of another,

while playing political football with peoples lives.

Austerity has also led to the out sourcing of benefit assessments undertaken by people unqualified to assess specific conditions, cuts to benefit payments and a lack of funding, services and support for disabilities that a “Fair Society” would surely provide.

There is still no universal access to post diagnosis support for people living with Dementia or other disabilities and their carers, including activities and sufficient signposting to taking part in research.

The abuse of our rights with Dementia and disabilities continues including prescription charges if you are diagnosed under 60 years old and access to transport and the failure to enforce the UN convention on the rights of persons with disabilities, also inclusion, engagement and equality in decision making and services.

The vision of the 1942 Beveridge Report which proposed widespread reform of the system of social welfare to address the five “Giant Evils” in society at that time; squalor, ignorance, want, idleness, and disease, seems to have been lost in a media run era of self interest, where the newsworthy get the lions share of attention.

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It seems to me reader that, far from moving toward to a “Fair Society”, we are moving back past Thatcherism to the sectioning and warehousing of people with Dementia. In  Britain it is reported that currently 70% of care home residents have Dementia, what are the figures for Heart Failure and Cancer, the 2nd and 3rd biggest killers in the UK, 2017?

Lately, the blame game has moved on to the increased cost to society of Disabilities. The post war hope of a “Fairer Society” has faded and you may conclude reader, that we seem to be going back to a society that hasn’t learned from the Great Depression of the 1920’s and the subsequent 1930’s, where blaming parts of society for the ills of others and where disengagement and discrimination became the norm and after 8 years of minority Government, the opposition isn’t blameless.

There is too much talk and not enough action by those that can make a difference.

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Do Politicians always tell the truth at elections anyway reader, how many times have we heard this or that will change, during an election campaign, nationally or locally, for nothing to change anyway.

They could undertake a social revolution, working together to build an inclusive fairer society, without the influence of big business and self interest, with fair wages and prices, services inclusive of disabilities as the norm.

It could also include making voting in elections compulsory as in Australia, as my Father used to say, “If you don’t vote, you cannot complain” and the NHS becoming proactive rather than reactive.

If the NHS and society were more proactive with appropriate integrated support and services, may be I and many others could lead a longer better life within our disabilities and may be other conditions like my COPD and their co-morbidities will take us before we enter the final stage of our Dementia’s or other disabilities, saving us from the indignities and the suffering of our families that that final stage brings.

I can hear them now chocking on their Lunches in both houses of Parliament and the Lobbyist’s rushing to their phones, David Cameron used to harp on about “The Big Conversation”, well maybe it’s time for it to really happen however, my own experiences of starting a conversation have been on the whole negative.

Whilst the World Cup is on Theresa May, Jeremy Corbyn and Vince Cable, stop playing political football with peoples lives, have a big conversation together, end the Austerity caused by the £1.6 trillion deficit, improve NHS funding, improve support and services for people with disabilities and end the Barbaric systems we have in this country.

No more Guidelines and Awareness, it’s time for Policy and Action

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I write these articles in my blog as a record of my journey through Dementia, to comment and hopefully raise some awareness about life with a Dementia. Sadly, the people that have the power to bring change are still unwilling to engage and fail to respect the rights of people with disabilities.

Whilst I write about my experiences in Dementia, which is relevant to my life at this time, it is important to remember that there are many other disabilities and their carers experiencing the same barriers and discrimination as the Dementia community. It is surely time for government and organisations to put aside self interest to build a fairer society, indeed according to Oxfam

The richest 1% now has as much wealth as the rest of the world combined

As I look into the distance, across the long road of Dementia, where my journey is but a few years old, I search for the sunrise through the somewhat gloomy sky, hoping action will bring the sun to our world of Dementia and other misrepresented disabilities and our carers.